Contents

BROKEN BOWELS

Cover

Copyright Notice

HELLO.

Foreword

Introduction

Disclaimer

ACT 1

Where Are You From?

History With Cancer

Prior Hospital Experience

Symptoms

Moving House

Go To ER. Now.

Home Infusion Days

The Colon Surgeon

Infection 2.0

The First Surgery

Brief Recovery

There Was A Second Tumour

Living With A Catheter

Genetic Testing

FOLFOX

We Can't Treat You Anymore

ACT 2

The Rubik's Cube Analogy

Higher Power

The Bladder Butcher

Mount Sinai

Meeting Dr. Kuritzky

Insurance Issues

Radiation Treatment

FOLFIRI and Dr. Cusnir

First Fistula

The Nutritionist

Doctors Are People Too

Cystoscopy 3.0

'Tis The Season

Fistula 2: The Sequel

ER. Again.

Coordinating Hospitals

Home Infusion Days. Again.

Kidney Trouble

Food, Glorious Food!

TPN

Immunotherapy

How To Never Give Up

ACT 3

Getting Better

Side Effects

Hurricane Irma

Hospital Clearance

ERAS Meeting

The Penultimate Surgery

Bladder 2.0

The Ostomy Section

Super Survivor

There's Just One More Thing

Goodbye

Credits

Statistics

BROKEN BOWELS

Tales of a Super Survivor

Patreon Edition

by Jay Versluis

BROKEN BOWELS

Tales of a Super Survivor

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Copyright © 2018 by Jay Versluis

All rights reserved.

ISBN 9781981003792 (Print)

Version 1.2

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No parts of this publication may be reproduced, stored in a retrieval system, or transmitted in any form or by any means, electronic, mechanical, photocopying, recording, or otherwise, without the prior written permission of the copyright owner.

This book is sold subject to the condition that it shall not, by way of trade or otherwise, be lent, resold, hired out, or otherwise circulated without the publisher’s prior consent in any form of binding or cover other than that in which it is published and without a similar condition including this condition being imposed on the subsequent purchaser. Under no circumstances may any part of this book be photocopied for resale.

Information in this book is not intended as medical advice, or for use as diagnosis or treatment of a health problem, or as a substitute for consulting a licensed medical professional. The contents and information in this book are for informational use only and are not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider for medical conditions. Never disregard professional medical advice or delay in seeking it because of something you read in this book.

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Cover photo by Julia Versluis

Cover Design courtesy of Amazon.com, Inc.

HELLO.

Foreword

by Julia Versluis

What can I say about my Husband, the person you are about to meet in this very personal journey. There are so many things I can say. He is kind, loving, caring and thoughtful and has time for everyone.

He loves helping people and has an easy going nature. He can read code like a computer, but gets lost with directions in the street. He will try anything once and is always open to spontaneous adventures and crazy ideas.

We've never stopped talking since the first day we met. I don't think we've ever run out of anything to say to each other. We have so much fun together and laughter is a big part of our lives.

You are going to meet him during one of the most difficult and painful experiences anyone could be faced with. Cancer. The ups and downs, twists and turns that we were both suddenly thrown into, and at times, our struggle to hold it all together.

A silent ticking time bomb had arrived to try and destroy our amazing life, on this ball through time and space, and we had no idea how we were going to diffuse it.

I knew him before that "thing" joined our lives. It didn't know that three's a crowd. It threatened to take him away from me. That was not going to happen if I had anything to do with it. If Cancer had decided to pick a fight with my Husband... it was picking a fight with me. It had no idea who it was dealing with.

I will be forever grateful to everyone who supported us along the way. We couldn't have done it without you.

I love my Husband so very much. I'm proud of everything he has achieved, how strong he has been through the darkest of times and how we've both come out smiling together through the other side.

He is amazing... he is my hero... he never gave up and he IS a Super Survivor.

Thank you for being you and forever in my heart.

Julia xx

Introduction

I know this sounds crazy, but I've recently witnessed a miracle.

In fact, I am the personification of that miracle. Me being alive today is that miracle.

I really don't know what to make of it, or what it means, or the reason why it happened the way it happened. All I can tell you is that it did happen, and how it all happened. That's what this book is all about. That's why I'm writing it. I need to share this story with you.

I didn't witness this miracle by myself either, there were several other people who all saw it happening too. I'm not sure if any of us can explain the details.

Briefly, and before we delve into the juicy details of the story, here's is what happened: I was diagnosed with colon cancer when I was 43, in the summer of 2015. That’s young for a cancer patient. The symptoms were weird and were not what is commonly associated with colon cancer. After major surgery in early 2016, the plan was to get me back on my feet within 6 months.

Sadly, the common treatment method of chemotherapy did not work in my case. Turns out that I have some genetic defects that lead to an aggressive form of uber nasty super cancer, rendering most conventional treatment options useless. As a result, my hospital decided to turn me away, knowing they had no idea how to help me going forward.

Seemingly left to die with no alternatives, the power of The Universe put me in touch with a crack team of doctors at a different hospital in Miami Beach. These people were not so easy to give up on me just yet. They suggested immunotherapy, the same treatment that miraculously cured Jimmy Carter.

And it worked wonders!

In only two months, I went from a sleep deprived wreck, living with constant pain, unable to walk without a wheelchair or a cane, to jumping on my bike and cycling 10 miles a day. And all that without major side effects.

If that’s not a miracle then I don’t know what is!

Broken Bowels is my personal account of these horrific yet truly amazing years I have endured. I’ve had countless treatments, at least 6 surgeries (that I remember) and some terrible side effects from chemotherapy. I’ve had a colostomy for nearly two years, and an ileostomy for nearly three months. I’ve lived without solid food for almost a year. And for many months, I’ve endured every type of catheter known to man until I very nearly lost my whole bladder.

But I survived, and now I’m happier than ever.

My doctors call me a Super Survivor. That's somebody who has survived cancer with a new generation of drugs called immunotherapy. It's the future, I'm telling you! Although already FDA approved, immunotherapy is not tolerated well by every patient. Not yet anyway. One day, I'm sure this will be the first line treatment for all kinds of cancer.

I was one of the lucky ones for whom this drug worked, one of the Super Survivors who responded incredibly well to it. My drug is called Keytruda.

But even with the best drug at your disposal, I'm convinced that it's not the only ingredient to survival. Two more components are needed, namely a crack team of A-Players to take care of you, and the right mental attitude. All three are equally important to get through such a trauma.

* * * * *

Some will say, "oh c'mon Jay, that's just great science, there's no miracle here". I can understand that, and I agree with you. It's the most reasonable explanation.

Many others will say, "Praise the Lord, that's clearly God's work". I can understand that too, and I can't argue with that either. At more than one important turning point in this story was I aware of a Higher Power dealing the cards. Some will call it God, some will call it many other things.

At the end of the day we may never know. Maybe it doesn't even matter "how" it happened, but my point is that it DID happen. There's no doubt about that. It goes to show that miracles are not something we make up. They're real. They exist. They're weird and bizarre, sure, but they're not impossible.

Turns out we must have an open mind for them to come and visit. I'll give you many examples to illustrate this fact.

If this was a police investigation into the appearance of miracles, this book would be my "witness statement". I'll let you judge for yourself how or why this all came together. That's the reason why I'm writing it: to tell you the facts and let you be the judge of who or what pulled the strings.

I'll tell you all the events as I remember them. I'm going to share with you what happened technically as well as emotionally, which internal stumbling blocks I came up against and how I ultimately overcame them.

It also means I'm going to have to let you in on several dark tales of my past, which on one hand make for interesting and entertaining reading, but they are here to show you in which context the whole cancer thing happened to me.

* * * * *

When I started writing my story, I realised that there were several ways in which I could do it. There's a lot to what I've been through.

I could tell you a heroic tale of how that evil cancer came out of seemingly nowhere and struck me down in the prime of my life. How it nearly killed me, and how thanks to my beliefs and modern medicine, together with a crack team of several excellent doctors at somewhat competing hospitals restored me back to health and turned my life around.

I could interpret for you what appeared to me as the hand of a Higher Power and highlight how my own beliefs and attitude twisted fate, how rules were bent before my very eyes and how I experienced one miracle after another, all of which would ultimately pluck me from the depths of hell and put me back on the slow train to complete recovery.

Or I could simply tell you the facts as they happened, and let you make of it what you will. Let you draw the conclusions, connect the dots, compare them to your own story and experience, and ultimately let you decide what happened in the three fateful years I will share with you here.

I don't mind telling you that I've been spending a great deal of thought and time on these two options.

Until one day, I realised that there really was no right or wrong way about how to present my facts, so I chose a compromise: tell you the facts as they happened, and highlight what appeared to me at the time as truly miraculous.

While it may sound like a cheesy sales pitch, I realised at one point that my story has all the ingredients of a major Hollywood blockbuster movie script: we have act breaks, plot twists, side plots, a bunch of great characters, a wonderful exotic backdrop and all the rest of it.

The stuff that writers care a great deal about when they have to dramatise a story to bring it to the big screen. Yet in my case, it all revealed itself right in front of my very eyes. No dramatisation was necessary to make the story what it is.

That's a good thing, because I'm not a writer. I don't know the first thing about inventing a story and making it sound interesting. So please forgive me if things sound a little rough around the edges at times.

* * * * *

I must admit that I've rushed this book out a bit. I could have spent several years polishing it, rephrasing sentences until the proverbial doctor comes, but I decided against it.

I wanted you to have it, I wanted you to read it, sooner rather than later. Who cares about form and grammar. More important things are at stake here.

What the book does have though is energy and authenticity. It's like the raw data dump that came out of my brain, directly onto the paper, or an electronic equivalent thereof.

If you're thinking, "OK, this dude is nuts", no problem - thank you for trying. Get yourself a refund, sorry I've wasted your time.

But if your curiosity is peaked, then welcome on board. Kick back and enjoy my tales. I promise you it'll be an entertaining read.

* * * * *

Speaking of Hollywood blockbusters, here's my motivation for sharing these experiences with you. I have a feeling that by telling you what I've been through, and how exactly I've survived this trauma, with all the ups and downs it had to offer, it may help you or someone else in a similar situation.

Perhaps I can give you hope when you think there's nothing more to live for. Maybe I can give you a different perspective on a situation, or simply provide practical tips on how to deal with the technical aspects of survival.

My experiences may even be helpful if you've not been touched by cancer at all. Perhaps you're dealing with a different type of trauma, or maybe you're not dealing with a trauma at all. That's totally fine too.

Because ultimately, even if you don't know what a solution to a puzzle looks like, it doesn't mean there isn't one.

Disclaimer

During one of my many hospital holidays, in 2017 I believe it was, I remember meeting a nephrologist named Dr. Weissinger. My primary physician recommended that I get in touch with him because according to the latest blood work, some of my kidney functions seemed slightly off the charts.

When Dr. Weissinger came to meet me for the first time, I was lying in my hospital bed, still recovering from a rather extensive surgery procedure.

"How are you feeling", he asked.

And I said, "I'm doing OK, given the circumstances - but you see, my doctor was a little concerned about those elevated BUN levels. They were fine until February this year, when the Creatinine levels started increasing, and shortly after the BUNs went up. It's probably nothing, but because I've had countless infusions of Zosyn, Invanz, Merrem, Vancomycin, as well as Oxaliplatin and Irinotecan over the last three years, not to mention the fact that I've been on TPN for the last 9 months, we best have a professional like yourselves keep an eye on all this.

Also, the latest kidney ultrasound and PET scan revealed that I appear to have a moderate Hydroureter condition on both sides, which is probably related to that fistula I've developed from my small intestine to my bladder. Other than that, I feel fine".

Listening to all this rather exotic sounding language, a cheeky smile developed on his face. "Are you a doctor", he asked, "because you sound like one".

And I guess that's my point: I'm not a doctor. Nor am I a medical professional of any kind. I'm a high school drop-out with no degree nor a valid driving licence. English isn't even my mother language. I've picked it up from watching The X-Files and Seinfeld in the nineties. Seriously!

Instead I'm a cancer patient with a condition known as "chemo brain". I've picked up all these technical terms from a mixture of internet research and many conversations with doctors and nurses. I'm mentioning this because there's a very good chance that some of what I remember here in this book may well be inaccurate. Or in other words, completely and utterly and totally incorrect. Possibly plain wrong. Did I say some of it? Because I meant to say most if it.

It's not that I'm deliberately lying to you here, quite the opposite. I'm trying to be as open, honest and as accurate as I can be. All I'm saying is: don't quote me on any of this stuff. Don't go and tell your doctor, "but Jay said in his book...", because your doctor will quite rightly tell you, "Who the hell is Jay?!"

The same goes for the timeline of events depicted herein. It's all true as far as I remember it, but I may have very possibly misremembered or forgotten the odd detail here or there.

Like one of my doctors in Baptist Hospital, whose existence has been completely eradicated from my memory, although he visited me for 18 days in a row. My wife remembers him as a really nice guy, but a cocktail of Morphine, Dilaudid and Percocet made that man vanish from my brain.

As far as I know, I've not made anything up... but can I really trust my brain? Could I ever?

So I thought I'd better smuggle a little disclaimer into the small print somewhere. Perhaps even before we begin getting into the meat of things. And here it is.

And while we're at it, here's one final note on language, form and grammar: I'm not a writer either. Owning a 7 year old laptop, having some perseverance and being able to type in excess of 130.000 words doesn't make me a good storyteller. Much like owning a keyboard doesn't turn anyone into a musician, or like owning a camera doesn't turn you into a photographer (trust me, I've tried).

How am I doing so far in selling this book? I'm probably not the greatest marketing person either. I would have been terrible in the Old West, trying to sell snake oil to patrons. I'd have to tell everybody "don't buy this stuff - it won't do anything for you, save your money!".

With all this out of the way, and keeping the above in mind at all times, I still hope that you can enjoy reading my story as much as I enjoyed writing it.

ACT 1

Where Are You From?

There's a question I get asked a lot. It's "Where are you from?".

It's a tricky one for me to answer, and I've given it a lot of thought as to why I don't really like the question. Perhaps it's because it's such a long and convoluted story for me, and I don't want to lie about it or tell people a shortened fake answer just to close the matter.

Because in my case, the answer to this relatively simple question isn't as straightforward "Buffalo, New Jersey" or "I'm from New York". It's much much more in-depth than that, and a lot longer too.

It's so tricky in my case because that question usually comes up when people see my name written down or hear me speak. Or both, which tends to confuse them entirely. And I don't blame them for it. I'm the personification of a contradiction on so many levels, and as such I forgive them for the confusion. Let's begin unravelling this Versluis puzzle by starting with what happens when people hear me speak.

Just hearing my voice means that for Americans, they can detect a British accent - but the trained ear can also detect that it's not 100% plain British. There's something else in there, which often keeps them guessing. When I tell them "I'm originally from Germany", they may respond with "I thought at first you were from X", with X being anything from the UK to Australia to Haiti (seriously, I had that before).

It gets worse when they hear me speak and then see my name written down. That requires a much more in-depth explanation, because neither Jay nor Jörk nor Versluis sound German. So I'll have to explain to them that my father was from the Netherlands, but my Mum was from Germany, and that I grew up in Germany.

But then, how does that explain the British accent? Well, I'll also have to explain that I had been living in the UK for 13 years, and I lost my originally American accent when I first moved to the UK in 1999.

However, to complete the story, it also requires me to explain how I got to the US, and that I haven't just stepped off the boat yesterday for a quick holiday over here - which I can understand is the next reasonable guess an American would deduce.

"No, we actually live here since 2012". And that, inevitably, leads to the next question as to "How did you manage to do that?".

And that, in short, and among many other things, is why I don't really like answering the question "where are you from".

One issue I'm having with the question is that it inevitably brings us to something like ancient history. Seriously, we've only just met, and it's more about "where are we going from here" that's interesting, not "let's talk about the last 40 years of unimportant history that brought us together to this very place". That's not important when you've only just met, or if you're in a brief relationship that's ultimately about the future.

We're right here, right now, and perhaps we're going somewhere together. Why would we have to discuss history in this context at all?

Take a cab ride for example. It's about "where are we going", isn't it? And although it makes a funny story, and an interesting starting point for chit chat, sometimes it just leads to way too many words when all you want is peace and quiet.

In those moments, I'd sometimes like to simply answer "I'm from Earth. How about you?"

In fact, forget the "How about you" part altogether. I don't think I've ever asked anybody where they are from, other than as a response to the long explanation that I have to give to explain where I am from, and to turn the tables so that the conversation is no longer about me.

I don't ask "where are you from" because I genuinely don't mind. Or care. Or need to know. This may sound as if I'm not interested in it. But I am, to a certain extent, and I would of course listen when the other party divulges that information by their own volition.

I just wouldn't ask that question because I don't believe that it would bring anything to the Here and Now moment that has brought us together. Quite the opposite: it would bring us further away from the beautiful moment that we're sharing right now with one another.

I'd rather be interested in "What were you doing when we just met", which is a much more interesting subject. Because I imagine that everybody has a plan, and meeting new people along the way means a sort of interruption of that plan. I find it interesting to examine where and why and how our plans intersected, how our paths may have crossed, and that perhaps now that they have crossed, what type of future The Universe has planned for us going forward.

That's why I don't like talking about "where are you from", because examining how we got here may not be the best strategy in figuring out what The Universe wants us to do next. It's ancient history.

But I guess we can't really compare a short cab ride with the relationship you and I are about to begin. You may indeed want to know a lot more about me. After all, I'm going to share very intimate details of my life with you, so you, dear reader, even have a right to know my history. In fact, it's imperative that we talk about it, otherwise my whole story won't make much sense at all.

Here's what happened before we just met.

* * * * *

I was born in Bremen, Germany, in the summer of 1972. That's the town that made Beck's Beer and St. Pauli Girl famous (even though St. Pauli is actually a district of Hamburg, some 100 miles away from Bremen). If you're not familiar with the latter, don't worry. Both beers are more or less identical and come from the same brewery, in the same slim green bottle, but some marketing guru has figured out that by slapping a different label on each bottle, one of them featuring a pretty lady in a dirndl costume (which has nothing whatsoever to do with Northern Germany or Bremen in particular) and selling it exclusively overseas makes the bank manager happy.

Bremen is not only famous for its beers, it's also the smallest federal city state in Germany, meaning that it has its own government. My mother was born in Bremen too, while my father immigrated from The Netherlands when he was but a wee lad, at the young age of 16 or so.

The two of them fell madly in love at the age of 18 and 19 respectively, got married in '71 and soon after I came along. Things were going well: my father was working in the steel industry as a ship builder, while my Mum had just finished an apprenticeship as a technical drawing artist for large container ships. Bremen, much like Newcastle Upon Tyne in the olden days, was know for shipbuilding and maintenance, and the city had a big port for both freighters and cruise ships alike.

My Dad was great with his hands. There is nothing he couldn't fix or build from steel. Because of this talent, and my parents' lust for adventure I guess, they had the idea to build their own house from scratch. This must have been in 1980, and they had just bought a piece of land for this very purpose.

Sadly this piece of land was in a somewhat desolate neighbourhood called Etelsen, a yet-to-be created suburbian development that several decades later would probably become a small town of some kind. Think of it as a cross between a village and no-man's land, some 40 miles away from Bremen.

Etelsen, this little speck of heaven, easily overlooked on any modern map of Northern Germany, even had a castle as its main attraction, set within large surrounding grounds. Trouble was that it was located far away from anything we would today call civilisation.

Imagine a place that closes their shops on Wednesday afternoons because "that's how we've been doing it for centuries". Only the bakery opened for two hours on a Sunday, otherwise it was business as usual from 9am to 6pm. Read: not much fun to grow up there, especially when your school and your friends are 10 miles away and you don't have a car or you're too young to drive.

When the interest rates spontaneously doubled in the mid eighties, my mother had to convert from being a house wife to working two jobs to support us. At the same time, my father decided to spend a little more time with the bottom of a bottle and soon started a relationship with someone else.

Needless to say, they split up not long after "the incident", sold the house, and my Mum and I moved to Verden, located some 30 miles away from Bremen.

Verden was where I went to school and where most of my friends resided. Both my Mum and I recovered from the crisis relatively well. But life at school wasn't really for me. I went to something you may call a prep-school, a government funded institution that would prepare young adults for university. It's completely free in Germany, and nobody has to go into debt just to give their children an education over there.

This meant I was surrounded by clever people, and nobody doubted that deep down I had what was needed to succeed on this path; but my lack of interest in pretty much any subject at the time, combined with my slightly difficult relationship with what was deemed "authority" meant that I wasn't getting the grades that were required for success. In fact, I can pretty much sum it all up with a single word that accurately describes my experience from about 5th to 11th grade:

Hell.

Nothing more, nothing less.

Sure, it was fun, and I excelled at extracurricular activities such as music and the arts, but sadly those weren't the topics that counted back then (although it made me popular with many of my fellow students).

Let me give you an example as to what I perceived as a little "off" in regards to the authoritative grown-ups we were supposed to look up to. Let's take my English teacher Mr Benner. He was only one of many examples I could give. I could probably fill a whole book about people like him and their mad ways.

Mr. Benner's idea of fun was to drag us into the speech lab at 8am in the morning. We had barely woken up, but he had been up since 5am and had already recorded the BBC news for us, from the local BFBS radio station. None of us were fluent or native speakers (except for Carsten perhaps), and we were supposed to write down all the news items in the broadcast, which was presented by a fast-talker like Jon Scragg.

Although a clever and engaging idea, that method doesn't teach you English. It asks "how perfect are you already", and if you're not, you'll get an F. It's as simple as that. I was under the impression that school was supposed to teach you things, rather than make sure you already knew what they thought you needed for university.

I'm mentioning Mr. Benner because he was "kind" enough to make an appointment for me at the job centre, which was run by his neighbour. This was long before I even entertained the idea of leaving school. In Mr. Benner's mind, I was less than suitable for the prestigious institution and I was obviously wasting everybody's time. He only had my best interests at heart of course, which is why he didn't discuss this appointment with me beforehand and rather told me when and where I'd have to show up.

I went as far as going to the meeting, but the man at the job centre had a nervous tick that made him break out into a very broad smile every few seconds. This guy was trying to integrate me into society and set me up with job for life, and all the while I couldn't help but laugh at his condition. It was very sad and hilariously funny at the same time. As much as they wanted to help, I could neither take him nor Mr. Benner seriously.

A little while later we found out from the local newspaper that Mr Benner had started a fling with one of his 18 year old students, and that he left his wife and four kids to start a new life with her. After she got the grades she needed, she dumped him. I'm so surprised it didn't work out.

Anyway, Mr. Benner got expelled from my school, and eventually I dropped out too. I guess we had at least one thing in common.

Thankfully I already had a part time job as a film projectionist at our local cinema, something I took very seriously. School clearly wasn't working for me, and I couldn't wait to leave it all behind and move to the proverbial Big City. Any city. And far away from it all.

Inspired by my part time job, at the age of 18, I moved to Berlin to do an apprenticeship in film and video engineering. This was a government sponsored three year deal at a film lab, but if you were really good you could take the final exam a year early. I did that, and because I liked it there, I stayed for a brief stint as an all-round operator across several departments. Those were exciting times, and it paid more money than I had ever earned before.

I had moved to Berlin in 1991, only two years after the wall had come down, and our company's bread-and-butter job was to produce film prints for movie theatres. When a Hollywood blockbuster was doing particularly well in Germany, and the distributor decided they wanted to supply more cinemas at short notice, we got the call and had to crank out another hundred or so copies within three days.

We also developed negatives for major film and TV companies that were shooting on film at the time. We even developed rushes for Hollywood filmmakers who had come to Europe to shoot in the nearby Babelsberg Film Studios in Potsdam.

When my apprenticeship ended, I barely escaped military conscription as I was declared "medically unfit for duty". What a relief that was! It was called the T5 rating.

Here's how this works: Every male human in Germany has to go through this governmental farce as soon as they turn 18, even though they are kind enough to let you finish whatever education you're currently attending. They just won't forget you and try to grab you afterwards, usually just before you could start earning money.

The only highlight about the German conscription is that you can do a civil service of your choice instead, if you declare that your conscience won't let you handle weapons and use them to kill other people.

No matter what you choose, the mental and physical examination remains the same and involves several doctors and nurses. The procedure includes the famous "testicle lifting while coughing" test. You may have heard of it. They also check your teeth, vision, examine your anus for haemorrhoids, and they check your scalp for lice. Quite a thorough procedure.

After mine was over, I had the opportunity to have a very frank talk with the examining doctor on duty, in a dilapidated barracks complex in Ex-East Berlin. Dr. Tolkien was her name, and she was simply wonderful. I'll never forget her. She was such a gentle woman, over fifty and overweight. She was the proverbial stark contrast to the otherwise dire situation. I told her how extremely scared I was about this conscription business and what the military would do to me.

Dr. Tolkien saved my life. Although many doctors were involved in the procedure, she had the final say. On the grounds that getting up at 5am every day to be shouted at would most definitely destroy my young fragile mind, she gave me the T5 rating. This means the German military would never contact me again and leave me in peace forever, free to live my life.

Thank you, Dr. Tolkien. I'll be forever grateful to you!

The timing was perfect, because I had just applied for a job in Hamburg at a TV post-production house and successfully passed the interview. I only sent out a single application, which lead to success. Clearly this was meant to be. "Could you start immediately", the boss asked me, and with the military scare out of the way, I could indeed.

So I moved to Hamburg in April 1994 with a trailer full of old furniture and two outdated computers, one of which was a Commodore 64 and the other was a 386-DX 40 that I inherited from my Mum's boyfriend. I found a small but nice apartment in Hamburg's notorious Red Light District at the northern end of the Reeperbahn.

I was happy for five uneventful years doing anything and everything for Studio Hamburg, the company that was kind enough to hire me. I was a telecine colourist, occasional video editor, I did tape duplication work, rolled in clips and bumpers for live TV shows and many other related tasks.

I lived among hookers conducting their business, I had countless shady sex shops in my neighbourhood, but I also had access to many small theatres and clubs in the area, like the Schmidt and Tivoli theatres. Not to mention a plethora or restaurants and fast food places right in front of my door.

During this time, I even tried myself out as a young actor and took some lessons with Mona Rosenquist while I was working. One night we were doing an improvisational piece on a small stage. The idea was that the audience would give us several words, we had to turn into a story on the spot, and then act it out in front of them.

We killed with our performance (not literally mind you). By complete coincidence I was "discovered" by a British theatrics agency. Imagine that. I even got a lucrative job as a dead body in a murder mystery show on TV. How's that for a debut?

Naturally, I missed the broadcast when it went out nationwide. To this date I have never seen the scene.

Although I liked my job, I always had the feeling that there should be more to it than just the German speaking market and their relatively small viewership of only 120 million people. This audience was spread across Germany, Austria and parts of Switzerland. Things on a much larger scale were being cooked up over in Hollywood and in the UK, something that had a much wider international audience. I felt that that was where I needed to be.

We were already doing a lot of work for the overdubbing department, laying back German audio tracks to international productions. Every imported piece of film and television is overdubbed in Germany, unlike many other countries which choose to broadcast such things with subtitles instead. That's why many Europeans can speak English rather well.

I always liked the English language, and it's perhaps no surprise that I despised the lameness of many a translation. Those were often performed by out-of-work second grade actors in the manner of a sausage factory. I've seen the guy who does Robert DeNiro's voice once in a scene on German TV. Shocking! Seeing DeNiro act with this guy's voice works great - but the guy by himself, without the actions of DeNiro, not so much.

Uninspired by the whole overdubbing scene that was ruining perfectly good movies and TV shows, I was wondering if there was a way I could get "closer to the source" so to speak. I was eager to learn more and make an impact on a grander scale.

So I applied to a handful of major post production houses in Hollywood. There were seemingly hundreds, so I chose the biggest ones there were at the time, hoping that one of them would sponsor me and invite me over to live in the US. As you can imagine, they weren't exactly waiting for me, and naturally I never heard anything back from a single US based company.

One of the big players was Todd-AO at the time. Industry papers suggested that they had just bought a small post production company in London, the former Chrysalis TV, and aptly named Todd-AO UK. I decided to send them an application too, more or less as a joke. I had never been to London, nor did I regard it as the hub of the international film industry.

Whaddya know, Todd-AO UK called me back a few days later, inviting me over for an interview. The directions that the boss had given me over the phone were hilarious. I wasn't aware of the differences between American and British English at the time. All I ever saw was produced by Americans in Hollywood.

I remember having a discussion with Nigel Whitaker, one of the over voice artists we had regularly coming in do to work in our company. That day he was with us to approve an English audio layback we had done for one of his documentaries. The reference copy we had for this already had an American version on it. Being the curious fellow that I always was, I asked him why we were doing it again, and if there was anything wrong with the US version.

He said, "Well this new version is for audiences in Britain, Australia, New Zealand and South Africa, and pretty much everywhere else in the world except for America and Canada". Still confused, I asked him why we couldn't just send them the American version. I'll never forget it when he said, "Because the American over voice won't be taken seriously by most of the world's audience".

Could there really be such a big difference? It was all "English" to me, or so I thought.

When the boss of Todd-AO UK called me, I barely understood him and his ever so slightly cockney accent. He said, "Take the Piccadilly Line from the airport to Leicester Square, then change into the Northern Line to Camden. But make sure you take the right branch, otherwise you'll end up in Golders Green. Take the High Barnet branch instead. See you on Monday!"

"Sure thing Dave", I replied, without a single clue as to what the man just said. Learning a language phonetically does not prepare you for the inconsistencies of how it's written. The letters "lester" were clearly nowhere to be seen on the tube map, an abstract piece of art in itself that was a not easy to understand for foreigners.

Nevertheless I made it to Camden, got the job and performed it swimmingly. They even promoted me to shift leader only a few moths after my arrival. Apparently they were all under the impression I was some big shot with major expertise in film and video, who had just flown in from Hollywood. I'm telling you, that American accent was a godsend.

I was a little strapped for cash at the time, around January 1999 if my memory serves me right. It was just after Christmas and I didn't quite know how to even finance the flight.

Turns out that Studio Hamburg, the company I was working for at the time, had an in-house travel agency, and they could hook me up with a "Valentine's Special" in February, flying from Hamburg to London and back for next to nothing.

So one day, about a month later, I had landed myself a job in Camden Town, London, as VT operator for general duplication work.

That explains the British Connection.

In April that year I had hired a white van, and my friend Oliver was kind enough to drive me over to the UK during a rather interesting night. I don't drive cars, and I had done little to no preparation for the trip either.

I was convinced that we'd get there with little more than a compass bearing. My instructions to Oliver were, "head from Hamburg roughly towards Cologne, then turn right and keep going until you hit the water. There should be a ferry somewhere to take us across".

Oliver very fondly remembers this journey and the following apartment hunt. I had less than three days to find a place to live, preferably close to Camden. Not knowing the slightest bit about how to do that in a foreign country, let a lone a foreign language, let's just say it certainly was a task with "advanced difficulty".

But I did it: moved to a new country, changed the language I was speaking, started work on time and never looked back. Oliver describes the whole whirlwind as one of the most eventful times of his life, but also as one of the most stressful ones.

All I remember is that I had no backup plan; that going back to Hamburg was not an option. I believe that the lack of a backup plan, and the steadfast without-a-doubt belief in the fact that this project was going to succeed, made it all happen. I did not waste time thinking "what if it doesn't work?" and instead focused all the energy at my disposal on this mission.

And what can I say? Everything worked out splendidly. Oliver suggests I should write a book about the events and call it "Turn right at Cologne". Perhaps one day I will.

* * * * *

I was working as a full-time employee at Todd-AO for about 9 months, until I realised that I hadn't paid off an overdraft with my bank in Germany. They were keen to get their money back, and with me no longer in the country, they were getting a little tetchy. I had to get inventive to pay them back.

To earn some extra cash, I started moonlighting in addition to my day job, for a company called IMG. They paid freelancers handsomely for video duplication work and dealt mainly with broadcasting and marketing major live sporting events. Think of properties like the English Premier League football (soccer), Wimbledon Tennis and many other prestigious tournaments. In a short amount of time my overdraft was paid off, and I even had fun doing it.

I quickly realised that my day job at Todd-AO was getting in the way of taking more lucrative shifts at IMG and decided to become a full-time freelancer. While shaky and scary at first, it was the best thing I've done for my TV career.

I started working for other clients, one of which was Ted Turner's empire. There was Turner Classic Movies, Cartoon Network, CNN, MTV Studios, several smaller outfits and of course the BBC, through which I met my wife Julia at the dawn of the millennium. We got married in 2004 in Las Vegas.

My life was great, but my dream was to live and work in the US at some point. I just never really thought about how to do that, or what I would want to do when I'm there.

Florida seemed like a nice choice, because the one thing that really didn't sit well with me in Northern Europe was the climate: 2 weeks of summer, some harsh winters, and the rest of the time, well let's just say there's a lot of grey in the sky.

I liked the heat, I liked being close to lots of water, and I knew those two things combined were very hard to come by unless you live in the South of France.

Thankfully, there's a small part of the US legislation that gives the Earthlings of many nations the possibility to become a US resident if they so desire: the Diversity Program, also known as the infamous Green Card Lottery.

If you're thinking about the movie Green Card with Gerard Depardieu and Andie MacDowell, the whole process is not at all as Peter Weir has depicted it on the big screen. Let me clue you in on the details:

The US government gives out 50,000 work permits every year to applicants from around the world, if their particular ethnic group is not overly present in the US. Usually UK nationals aren't allowed to apply because there are already a great many British people living in the US, but Germans and Australians are usually welcome.

Therefore, as a German passport holder, I was eligible to play this lottery once every year in the hope that I could one day be drawn from a pot of millions of applicants.

I started playing the lottery occasionally since my days in Hamburg, where my colleague André was also interested and entered with me once or twice. I didn't play notoriously and forgot about it most years, but occasionally I would enter, with a glimmer of hope at the back of my mind.

In 2011 we were notified that both my wife and I had indeed been drawn, and that if we wanted to go ahead, we should get our arses in gear and take the relevant next steps: visit expensive doctors, stand in the queue of the large American embassy in London at 6am in the morning to have our papers checked (without any mobile phone gadgets or house keys mind you, all in the name of "security"). In addition, we had to prepare for departure from the life you've known until now.

There are two snags to winning the Green Card Lottery:

1.) 100,000 winners are drawn, out of which the first 50,000 applicants will get a Green Card. So there was still a chance that if we were too slow to get our act together, we may lose our chance.

2.) It's expensive. You need about $3,000 to go ahead with the paperwork and doctor's certificates.

3.) If you decide not to move, the Green Card will become invalid. The rules are that you must remain in the US for a period of at least 6 months every year for the card to stay active. Showing up for a couple of weeks a year will lead to the card being revoked (even though, from what I understand, several million Green Card holders get away with this).

The decision my wife and I had to make was this: do we want to give living in the US a serious try, or shall we rather give it a miss? Live the Sunday Afternoon Existence that was working relatively well for us, or shall we leave for the Great Unknown and see what happens next?

The timing couldn't have been better: Julia had just taken voluntary redundancy from her longtime job at the BBC. I had a nice job with IMG, but as a freelancer in my field, I had probably reached the pinnacle of what I could ever achieve. I had no ambitions to move further up in the managerial TV food chain. Instead I wanted to explore other avenues, such as developing apps for iOS devices and focus on a side business I had, administering dedicated web servers.

We were both property owners and could either rent out or sell our objects to be financially secure for a while. We had no real local friends in London, nor kids nor family to look after. Whoever we asked for advice, everybody told us the same thing: Go and do it.

And so we did.

Picking a destination in the US was easy. Although we were half thinking of Los Angeles at first, because both our television careers could be a valuable fallback to earn some money, we decided against it. It would be like not really changing our lives and only updating the post code and the address, while the job would potentially stay the same. Neither of us was keen to continue in the ever changing TV and broadcast market.

Las Vegas was also an idea, but neither of us was a particular fan of the the dry heat of the Nevada desert. Besides, there's not a lot to do or see as soon as you leave The Strip. And professional gambling is - contrary to popular belief - not a lucrative long-term job.

So we decided on our favourite vacation spot that we've been to for many years: Miami Beach. We knew the area, we always loved it, it had everything to offer that I always wanted - so why not start living there and see what happens next.

In 2012 we jumped on a first-class flight with British Airways, on a one-way ticket, courtesy of several thousand accumulated points on our American Express credit card. All we had with us were 6 large suitcases that barely held all our possessions.

We haven't been back to the UK ever since, at least not at the time of writing.

* * * * *

Which brings us neatly up to speed with where we are today, happily living and enjoying Miami Beach, Florida. It's decidedly European here when it comes to amenities, and it's unlike other areas of the US, particularly those that would require a car to get around.

We seem to have everything in walking distance from our home: large supermarkets, a plethora of restaurants and shops, and of course there's the beach. It's very bike friendly here too. There's also a rather developed and well working public transport system here, courtesy of Miami Dade County.

We don't own a car, because traffic is a nightmare and parking is difficult to come by. Not too different from what our life in London had been, so we use our bicycles to cycle everywhere we can. There are practically no hills here, and a few bridges aside, Miami and the surrounding areas are as flat as Holland.

If we need farther transportation anywhere, we make use of buses and trains, and for everything else there's Lyft, Uber or Home Delivery.

The weather is always warm, even tropically hot in the summer, and we're surrounded by water. What's not to love?

Now you know where I'm from. It took a little while to tell you all this, but it certainly explains why there's just no easy answer for me to this question. This setup also gives you a bit of insight into my character, the risks I'm willing to take and my general attitude to life.

I'm afraid it gets a little more serious from hereon in, but fear not, the style isn't going to change. I just can't write any other way.

When I told some friends about writing this book, and what it was going to be about, there was some general concern that the subject matter would be "too tough" for them. They knew what I had been through, and the common response I got was, "hey I'd really like to read this, but at the same time, I'm not sure I can go through all this again".

I know where you're coming from. Look at it from my perspective: going through the events I'll tell you about is one thing. Writing a book about it and reliving those moments in detail is quite another.

At the same time, I want to put your mind at ease. This book is a bit like Breaking Bad, a show that on the surface appears to be about cancer and drugs. That's probably what a summary would tell you.

But the more you watch it, the more you realise that Breaking Bad is not about cancer. Come to think of it, the show isn't about drugs either. It's about characters in extreme situations. It's about how they react to what's happening, and how they get through tough spots in their journey. Sure, the main character has cancer, and his motivation for cooking drugs is part of the back drop. But that's not what the show is about.

This book is no more about cancer than Breaking Bad is. Yes, there is cancer in this story. That's why I'm going through this whole ordeal. Getting away from cancer is my motivation if you will. And yes, there are plenty of drugs, and I'm describing what they're called and what they do. But really, its about how I get through all this, what happens, why it's happening, and how I come out on top of it.

I'm not on my own on this journey. We get to meet a lot of colourful characters and I'll try my best to introduce them. It'll be a fun and exciting read, despite occurrences.

Trust me, I'm the author.

History With Cancer

I practically grew up with cancer. Several people in our family had cancer, on both my mother's and my father's side. My grandmother had breast cancer back in the eighties, and despite a bitter and long fight with early chemotherapy drugs, she eventually succumbed to it.

Both her sisters (my great aunts) also had cancer. One died of breast cancer, the other of bone cancer. I remember vividly that after one of them had a mastectomy, my great aunt's cancer did not go into remission. At that point, she too was given the choice of chemotherapy.

She declined, on the grounds that it didn't help her sister much (my grandmother), who had died several years earlier. Instead she decided to remain at home with her son, who moved back from Brazil to take care of her. They were given a box of Morphine for pain control until it was over. In the medical world this is called "palliative care", which means that drugs are prescribed to lessen the pain and suffering of patients.

A very courageous decision, I thought at the time in my young mind, and probably my choice too should I ever be in that situation.

On my father's side, cancer was never discussed as such, even though colon cancer was a big deal for the whole family. Perhaps it was decided that I was too young for that topic to be discussed, and that it was all too terrible to talk about anyway, so the topic was never out in the open.

My Dad's grandfather's brother (my great uncle) had a permanent ostomy back in The Netherlands. I only met him once when I was very small, so I have no recollection of him or his wellbeing.

My grandfather (his brother) died of a mix of pancreatic cancer and cirrhosis of the liver, the latter because he was a heavy drinker for much of his life.

I recall that there was a major surgical procedure scheduled in which the doctors opened him up, looked at his insides, and decided that he wouldn't survive an operation. They closed him up without treatment and sent him home with a box of Morphine to ease the pain until he died.

His youngest daughter had been given instructions on how to administer the medication, and she did so until the end. His youngest son stayed with us when the news broke. Although we all knew it was coming, it was a terrible shock for the whole family.

* * * * *

When I was a teenager, maybe fourteen or fifteen, I worked for my father's company. One day, while I was filing stainless steel or sorting screws, he came to me and told me that my uncle (his brother) was in hospital for a colon procedure. A large piece of his intestines had to be removed, but no details were discussed.

The word cancer was never mentioned. Only much later did I find out that he too had colon cancer. Even my father, years after we lost touch with one another, had a colon procedure done. Again I only know from hearsay rather than personal account that this too was colon cancer.

This disease has, in effect, always been in our family. But back then, due to the attached stigma and lack of scientific knowledge, it was not known that we all seem to have a genetic defect that's causing this condition - at least on my father's side of the family. This genetic condition is called Lynch Syndrome.

* * * * *

When my Mum and I discussed this whole cancer business, I remember her saying, "Don't you worry about it, cancer always skips a generation". She was only trying to ease my mind, and I appreciate that.

But being the bright kid I always was, I thought, "If that is the case, then that would be YOUR generation. I'm the guy with the bullseye on his back". I'm not sure if I said it out loud or if it was just a thought.

My mother by the way is still in good health and we're very close. She's 65 at the time of writing, smokes like a chimney and drinks like a fish, yet she is a picture of perfect health. Meanwhile, I have never smoked, have given up alcohol altogether, cycle everywhere I can, and despite a few body weight issues, I've had one foot in the grave by the time I was 43.

I guess that's nature for you.

Prior Hospital Experience

I've never been ill in my entire life. Not ill as in "having to go to hospital" ill, let alone visit an Emergency Room. No broken bones, no casual car accidents or skiing mishaps, let alone any internal surgery procedures like appendicitis or tonsil shenanigans. Nothing. Lucky me!

The closest thing I got to visiting a hospital in an emergency was when I accompanied my Northern Irish colleague Alun to the A&E in the middle of the night (A&E means Accident and Emergency, the British term of the American Emergency Room). Alun had tripped on the stairs while we were working a nightshift together, nearly breaking his ankle.

I was the shift leader at the time in a TV post production company in Camden, called Todd-AO. We were doing mainly video duplication work there, twenty-four hours a day, seven days a week. We were working on Disney feature films for release on VHS or DVD, Buena Vista and Touchstone classics, together with work for the then in-house Cartoon Network and Turner Classic Movies, as well as MTV Networks across the road. This was in the late nineties, when VHS still had a considerable market share.

Earlier that night, Alun had been rushing down a flight of stairs, taking two steps at a time. He must have slipped, landing on the outside of his foot with his whole body weight. Ouch! We could hear his screams two storeys up from where he had landed, behind several double doors and despite the noisy air conditioner.

I decided we had to help him right away, and the A&E was only twenty minutes away by cab. I called our preferred provider immediately, lent my shoulder to Alun for support, and together we hobbled down four flights of stairs and got into the car.

I remember the chat we had with the mini-cab driver. He was from Croatia, and we were doing a bit of duplication work for that territory. Serbian and Croatian master tapes required different subtitles, and I wondered why that was.

Turns out that both countries have different languages, albeit very related ones. "We can almost understand each other", the cab driver explained, "but sometimes we can't".

A bit like Brits and Americans I guess.

The relaxed atmosphere seemed to calm Alun down, and when we arrived at the A&E, he said, "Thank you so much for your help, Jay, but I can take it from here. No need to come inside with me, I think I can manage". After several reassurances, I left him at the hospital and went back to work with the Croatian driver, hoping Alun was OK.

That was the first time I've been close to a hospital in my adult life.

* * * * *

A few years later, I accompanied my wife to a doctor who had his practice inside a hospital. Again this wasn't the in-patient experience I was going to get very soon, it was just a doctor's practice on the hospital campus. Middlesex Hospital in North London I believe it was, if my memory serves me right.

My wife had an issue with her tendon, and I remember that after a lengthy waiting period we finally saw a well-dressed Indian gentleman in a handmade pin-striped suit. Italian perhaps, or maybe Saville Row. Definitely expensive.

Although my wife was the patient, the man kept addressing me, as if I was her keeper. He was giving me advice on what my wife should be doing so that her issues would go away. In the end we walked away with no real treatment options, other than his advice, "She should wear some heels".

Needless to say, we only saw the man once. And thanks to the National Healthcare Service, the brief meeting didn't cost us a dime (even though you could argue, “who would pay for such advice”, his tip actually worked).

* * * * *

Around the same time, in 2006 I believe it was, a friend of mine had an appointment in the then brand new University College Hospital in Euston, Central London, also known as UCLH. It was all glass and chrome and must have cost a fortune to build.

It stood in stark contrast to the red brick building that was Middlesex Hospital, which in turn looked more like a disused military housing complex from the fifties.

My friend had a rough time growing up due to a hormone deficiency that had been caused by a car accident when he was a child. As a result, he had been dragged from one doctor to another while he was growing up. Some of those doctors weren't exactly considerate with him, showing him off to large groups of students without prior permission.

Understandably, the experience had scarred him for life, so he asked me if I could come with him to see this new doctor. It was nothing serious, nevertheless a sensitive issue that my friend wanted a medical opinion about. Naturally I said yes, so I snuck another peek inside a very different style of hospital. Still, only as a visitor, not as a patient.

What struck me about UCHL was that although the exterior and corridors all looked like a modern office building, there was a definite touch of NHS lurking under the hood. The treatment room for example (or rather, the consultation room in which we sat with the doctor) was small and bland, and didn't fit in with the rest of the architect's vision for this venue.

But who am I to judge. NHS treatment is free of charge for UK residents, so who cares about artistic vision when it comes to people's health and wellbeing.

* * * * *

I don't remember what drove me to do this, but when I was in my early thirties, I bit the bullet and had my first ever cancer screening. This event was my first ever hospital experience as a real patient.

I went to see my GP (that's short for General Practitioner, which is the PCP or Primary Care Physician in Britain) and explained my family's history with cancer. I was eager to hear his opinion about how early detection could potentially help me avert any disasters later in life.

He recommended to send me for a rectal examination and take it from there. This procedure would be carried out by a doctor in a nearby hospital (Middlesex as it turned out), and he'd have to write a referral for them to get in touch with me for an appointment. "They'll write to you directly in about three months time", he said.

I was perhaps ever so slightly shocked about how long it would take to get an appointment for something so relatively simple. Then I watched the man type a note using two fingers on his computer, one letter at a time, on a standard word processing programme.

He was obviously not a computer whiz-kid, or perhaps computers had only just been installed in his practice. I don't mind telling you that watching him type was actually more painful to watch than my upcoming procedure. I even thought about offering up my help to get this letter typed in 2 rather than 20 minutes, but I decided against it. I wanted to show a bit of respect and restrained myself instead.

Two months went by, and eventually I received a rather impersonal letter from the hospital with a date and time for my appointment, demanding that I'd be there in four weeks time. There was no mention of who the doctor was going to be or how long the procedure would take, but brief directions on how to get to Middlesex Hospital were provided.

Also enclosed were instructions on how to prepare oneself for the whole thing, which in short was, "get yourself some epsom salt, drink as much of it as you like the day before, clean out your colon and don't eat or drink anything".

I did precisely as they asked, although to this day I have no idea what the correct or ideal ratio between water and epsom salt is for a complete colon cleanse. Perhaps I'll find out one day.

Needless to say, this was not a gentle exercise but a rather brutal one. I knew then that there had to be a better way to clean one's colon for such scenarios.

And guess what: today I can tell you that indeed there is one. It's a product called Prepopik. It's a solution that both tastes great and flushes you out very gently. Say goodbye to stomach cramps and endless sessions in the bathroom!

At about $150 per pack it's maybe a tad pricey for what it is, but trust me when I tell you that it's the nicest way to clean your colon. In-depth and easy to follow IKEA-type instructions are included, together with a plastic cup. And if you're lucky enough to have a good insurance plan, you might even get the stuff for free.

I'm not being paid to write this by the way (even though perhaps they should pay me for saying this, or alternatively let me have a lifetime supply of Prepopik).

* * * * *

Anyway... back to my first hospital experience in the UK. When I arrived at the huge Middlesex Hospital campus, a maze of several red brick buildings with bland architectural features, I thought to myself that a map would have been nice. Navigation and directions were never my strong suit.

With persistence, I finally found my section and headed for the reception desk. I found myself surrounded by busy overworked nurses in scrubs and the atmosphere was slightly intimidating: there were no smiles on people's faces, which was true for both patients and nurses alike.

In fact, there was an air of fear and stress hanging heavy over everyone's heads, as if nobody knew if they'll leave this building alive or dead. Perhaps they were all robots who had not been programmed with happiness, I thought.

Without cracking a smile, Reception Lady pointed out where I had to go and wait, so I followed the signs and found what I needed.

After a short waiting period, I met a Robot Nurse who took some blood from my right arm, the favourite spot among many phlebotomists (those are people who draw blood from your body and make sure the lab gets it).

Although I gave it my best and most charming shot, I could not make that woman smile or look me in the eye for a single second. Not even the A-Material was working. Now I was convinced that something hinky was going on here.

Had this futuristic health paradise been created by Delos, owners and operators of West World? Perhaps they were working on a new project along the lines of Medical World, and I had accidentally stumbled into it?

I was told to get into a tiny little room, get undressed and lie sideways on the table with my face to the wall, my bare arse facing the door.

15 minutes later a doctor showed up, ripped open the door while talking to someone invisible outside for at least another minute, completely ignoring me. When he shut the door again, it appeared for a moment as if he would finish his conversation outside the room, possibly to give me his full attention.

But he did not. Instead, he kept opening and closing the door for at least 5 times, still talking decidedly in-charge to that special someone outside the room. Meanwhile, still staring at the wall as I had been told, all I heard was his voice while enjoying a cold draft on my anus every time he opened the door.

If this was indeed a comedy blockbuster starring Chevy Chase, this would all be hilarious. But it wasn't. All I felt was confusion:

Could I have perhaps spent this time waiting in a sitting position instead? Maybe even - dare I say it - wearing my clothes, without my arse hanging out? Was this even a good time for the busy doctor, or should I rather come back another day, as it looks like he had much better things to do than see me right now? Did he even know I was in the room?

When Dr. Open-Door finally turned his attention to me, I didn't quite understand that he was actually speaking to me. I thought he was still deeply involved with Special Someone on the outside of the room. As soon as we managed to communicate person-to-person, I tried my best to explain why I was here as fast and concise as I could. I don't think our eyes met a single time during the whole conversation, courtesy of the awkward position I was still in.

Thinking back to it, I'm pretty sure he was one of them robot things himself.

"This may be a little cold and uncomfortable" he said, after having inserted some large object into my backside. "It's just air, nothing to worry about. It'll help me see what's happening inside you".

At least he was using a generous quantity of KY Jelly (TM), which made the whole procedure much more gentle than it could have been. Several twists and turns later, following various embarrassing blows and farts, he pulled whatever he inserted out of me and handed me a box of tissues.

"I can't see anything suspicious in your rectum, but to make sure the rest of your colon is fine, I'm recommending a full colonoscopy. It's basically the same thing as this, just going in a little deeper. They'll write to you with a new appointment within four weeks."

And off he went again, ripped open the door and escaped, already talking again - either to himself or Special Someone. No "good bye" or "nice to meet you". His exit was as weird as the missing introduction of who he was.

I never even saw the man's face.

* * * * *

As promised, the invitation from the hospital came within four weeks. This time I had an appointment for a full colonoscopy, scheduled to be in a couple of months.

The details were as sketchy as for my previous rectal examination though, and given my slightly awkward experience, I asked myself just how badly I wanted a repeat of that.

Would the procedure be done under complete anaesthesia, or would I be awake? Why didn't they include more details in that letter? How long would it all take? Would it be worth the trouble? Is this what it's like being treated on the NHS? And - most importantly - how badly did I want to know the results?

Something inside me, foolishly, decided to simply not go through with it. I'm kicking myself for that today. I had the same reason that most people turning 50 have. Nobody wants to see a proctologist and have their colon examined.

Reasons typically include, but are not limited to "I don't want anyone fiddling around in there", "why fix something if it ain't broken", "I haven't got time for this", "it's not that urgent anyway", or whatever other excuse our Bullshit Brain comes up with from time-to-time.

Reasons that, having been through what I've been through, seem completely ridiculous. Yet they are perfectly understandable when you're healthy and haven't been touched by cancer - and of course especially if you've ever had an experience with a doctor that's less than inviting.

All I can tell you is this: go and do it anyway. Getting an annual colonoscopy is a walk in the park compared to what nature has in store for you if you miss out on early detection.

Trust me on this!

Symptoms

Like so many other patients, I missed my early cancer symptoms altogether. In fact, they were so negligible that it had never occurred to me to see a doctor because of them. In my case it was very simple diarrhoea and minor discomfort during urination.

In the summer of 2015, after a particularly nasty vegetable chow mein (or was it dim sum?) from the cheapest Chinese take-out in Miami Beach, I remember sitting in the bathroom and both projectile-vomiting while diarrhoeaing at the same time for what felt like hours. It was like my body was saying "enough with this, eject at both ends, and do not eat this crap again".

Naturally, I obliged.

Thinking back to that summer, I had had casual diarrhoea every so often for no apparent reason. I always put it down to bad food, too much food, or too much food mixed with too much liquid, simply because it wasn't anything alarming or painful.

From what I could see it was just thin stools, and really, who thinks too much about what's happening in the bathroom? You go in, do your business, and get on with your day. You don't go and write a book about it (or at least, normal people don't).

* * * * *

One day in the same summer, Julia and I went on a longer bicycle trip all around the beach and the mainland. We started at South Pointe in Miami Beach, went over the beautiful Venetian Causeway, then towards North Bay Village and back.

It was a hot day, and we stopped for water in a little park with public restrooms and water fountains. It looked like neither of them had been used (or cleaned) in a few weeks, and admittedly the water did look a little murky, so murky in fact that my wife didn't want to touch it (let alone drink it).

Being the brave superhero that I am, I decided not to care and drink it anyway. Back in those days I didn't pay all that much attention to what I was putting into my body, and I had nearly 300 lb of body weight to show for it. Thinking back to those times, it's a bloody miracle that I didn't develop a serious illness many years earlier.

As it turns out, drinking that murky water at the park was a huge mistake. Gee, who could have possibly known? The next thing I felt was extremely painful abdominal cramps, so much so that I had to lie down in somebody's front garden for 20 minutes and recover.

It felt like my body was trying to eject something but was blocked up inside, as if there was literally a knot in my intestines, or an obstruction that wouldn't let anything through.

We barely made it to Burger King on 41st Street, where I could thankfully relieve myself several times until the pain was more or less gone (read: I practically exploded in the bathroom). This experience convinced me that I should urgently see a doctor and just check if everything was all right inside me, or if I had ripped some vital organ in the process.

* * * * *

A little while later, not quite having made an appointment with a doctor just yet, there was a one-off showing of Steven Spielberg's movie "Jaws" in our local cinema on Lincoln Road. I had never seen it on a big screen before, and this was the 40th anniversary of the movie.

When we booked the tickets, I felt relatively fine. By the time the day of the actual showing came, I had developed a rather nasty urinary tract infection. It was excruciating to cycle to the cinema, let a lone sit through the two hours plus trailers and "special event" intro.

On our way back, I decided to invest into some medication from our local drug store to get the pain under control, followed by a phone call to our doctor to make an urgent appointment.

* * * * *

I had met Dr. Lester De Leon before my first session with him as a patient, in the summer of 2015. My wife had seen him a couple of years earlier, but I never had the pleasure as a patient. Dr. De Leon is a general practitioner and family doctor with the Miami Beach Medical Group on Alton Road.

Seeing that my only other experience with a doctor was with the Slow Typer back in London, who had referred me to the rectal examination a decade earlier, I was pleasantly surprised with Dr. De Leon's highly efficient operation: smiles in the waiting room, "Live your Life" posters in two languages, free coffee, a telenovela on the TV, cafe con leche on tap, and even a lady with a sandwich tray walking around offering us breakfast. What an extremely welcoming experience!

But that was just the beginning. When my name was called out, or at least some variation thereof that I deemed "close enough", I was first seen by a triage team. They took my weight and blood pressure, blood sugar, it was almost like a full medical checkup, much more thorough than what I got in the UK. The triage team also asked why I wanted to see the doctor, and following our brief conversation, I was seen into a treatment room.

What struck me was the casual technology at Miami Beach Medical. Everyone seemed to have an iPhone; there seemed to be a networked computer in every room, attached to which was a UPS under the desk. That's in case there's a power outage, something that can ruin your day - and something that happens several times a month in our neighbourhood.

I enjoyed meeting Dr. De Leon. He was very friendly, quick with a smile, approachable, trustworthy, he listened to what was troubling us, and he wasn't too quick reaching for his prescription pad either. I instantly liked him when we first met, in part because of his holistic approach to wellbeing.

When he came in to see me, I told him about my recent health experiences, adding that it was perhaps nothing and that I might be over-cautious. I half expected him to say "take a couple of aspirin and drink plenty of water", but that was not his response.

He wanted me to undergo a quick pelvic x-ray and an ultrasound, as well as some basic blood work. Except for the latter, it could all be done there and then at his facility.

Wow, I thought!

Moreover, being aware of the fact that we were not insured at the time, he did not charge us a penny for the x-ray or the ultrasound; he only charged us for the blood work, as an outside lab would have to take care of it. I couldn't have been more grateful!

He pointed out that the symptoms I have experienced are very difficult to diagnose, and that it could literally be anything at this point. Still confident that it was nothing more than a tummy bug, we did the x-rays in a dark and slightly spooky room at the end of the hallway, followed by the ultrasound in a small treatment room next to it.

The nurse was staring at the monitor, going over the same spot on my abdomen again and again. Her English wasn't great, but she managed to relay that we needed to speak with the doctor. There was a sense of urgency in her voice that made him appear only a moment later.

The two of them talked in Spanish for a while, and even though I didn't understand them, their body language had seemingly lost all sense of humour.

"Jay", he said, "have you got any history of cancer in your family?"

There it was. The C word. For the first time from someone who doesn't really know me or my medical history. This couldn't be a good sign.

"Sure thing", I openly admitted, explaining my family's history with cancer as brief as I could.

I should have put two and two together much earlier, because I was now at an age at which both my father and his brother had some bowel thing going, even though they never admitted to me what it was exactly, nor that it was probably cancer related. We had lost touch many years ago.

Those matters were rarely discussed in detail in our family, at least not on my father's side. Besides, it hadn't quite sunk in that I had aged all the way into my forties until that moment.

"Give it to me straight, Doc", I thought, but I didn't get a chance to say it out loud doing my best Humphrey Bogart impersonation.

Dr. De Leon explained that all he could see there was some kind of "mass" in my bowels, and that this would most likely be the cause of my troubles. He couldn't see what it was exactly, but he guessed that I would probably end up having surgery.

Yikes! First the C word, and now the S word!

All that meant to me at the time was a huge bill, probably five or six digits long. I couldn't afford that! In my mind, my life was cheap and unimportant. For all I knew, I was neither worth the expense nor the fuss.

To get a clearer picture of that mysterious abdominal mass, the doctor suggested we do a CT scan at a facility on the mainland called Pinnacle. My wife had a mammogram there the year before, so we knew where it was.

Pinnacle even offered to pick us up from Miami Beach and return us after the procedure, and thanks to Dr. De Leon's connections, he worked out the good discount price of $250 with them. At the time, other facilities would charge in excess of $1000 for the same thing.

The scan happened only a few days later and was relatively uneventful. Although it was my first ever CT scan, and my first introduction to the goopy glue-type substance called EZ-EM (an oral contrast solution disguised as a delicious beverage), I did not get many details from the technician on the day.

We did however meet an older Australian woman in the waiting area, who had been living in the US for many years. Having been through both chemo and radiation, she was now on her way to recovery. It was lovely meeting her, and I remember telling her about how I may be at the beginning of a similar journey to hell and back.

I told her about my fear and anxiety, and she consoled both Julia and myself reassuringly that doctors and medication can indeed perform miracles these days.

* * * * *

Two weeks went by without a word from Dr. De Leon's office. How long would it take to interpret the findings of that CT scan, we wondered? And what would it all mean in regards to my future?

I didn't even want to chase those results up, thinking the less I knew about it, the more chances I'd have to somehow avoid a pending catastrophe unscathed. Silly ridiculous thoughts, I know, but rationality hardly comes into play under pressure.

Eventually I picked up the phone and chased him up. He was very kind when he told me that all it appeared to be right now is an infection, and that I should go and see a good friend of his over on the mainland who would perform further tests.

Half relieved, I obliged and made an appointment at the facility he suggested: Gastro Health on Medical Mile in Sunset.

This is where we met a rather terrible doctor whose name escapes me entirely now. The only thing he had going for him was a very nice nurse practitioner who made up for his lack of bedside manners.

He insisted on a variety of stool tests, an extensive blood work and a urine culture to get a better idea of what was wrong with me. This would run a bill of $1600 for us, plus a new CT scan at his own facility.

We protested, questioning what was wrong with the scan I’d had only a few weeks ago. His response was a mixture of "we have better equipment" and something along the lines of the scan being a few weeks old by now and you never know what's changed. He needed a clearer picture of what was happening in my body.

It made sense. All I could see at this point was the "unnecessary expense" this would all incur from money we clearly didn't have at the time.

Had I only known how extremely irrelevant thoughts like that are at the time, and how much unnecessary pressure it adds to an already uncomfortable situation. As the old saying goes, "you cannot put a price on your health". It's so true.

However, if you have to choose between paying the rent and doing the same test twice, especially when you're not at Death's Door, I would have consistently chosen Death's Door at the time.

It strikes me how much my attitudes have changed as a result of having been through this whole survival trauma, and how irrelevant petty concepts like money and other everyday worries seem to me today.

Begrudgingly we obliged to his demands, taking all relevant tests at our local Quest lab on the beach and arranged for another CT scan at Gastro Health a few weeks later.

Moving House

In the midst of all this turmoil, we received some interesting news from our landlady Gladys,

She lived in the apartment directly next to ours and wanted to move into our place (or more accurately, her own place). She had been renting next door to us because that apartment was prettier, but for tax reasons it was now cheaper for her to live in the property she owned.

Lucky for us, her landlord also lived on our floor, namely in the apartment next to hers. Hence, we could strike a deal and in essence simply swap apartments with one another. Which was both fun, and only marginally increased our rent.

What an adventure! We shook hands, and a couple of weeks later we all started "moving without really moving".

The only thing was, this adventure couldn't have come at a worse time, as the effects of my abdominal infection were beginning to show signs over my whole body.

My condition started to deteriorate: feverish shivering began to creep in. I remember sitting outside on our balcony in the blazing Florida summer sun one day, wearing a thick sweater and jacket, feeling so cold that my teeth wouldn't stop shattering.

The only time I had felt like this was when I had a mild heat stroke and major sunburn on our honeymoon in 2004. Back then I had looked like a lobster, and the only thing that could help was sleep.

This time however, it did not: rest was good, but without regular intake of Acetaminophen I wouldn't have persevered.

Fun Fact: Acetaminophen is known as Paracetamol in Europe. Sold under popular brand names such as Panadol and Tylenol, both the US and European name have their roots in the colourful chemical name of the substance, which is "para-acetyl amino-phenol".

* * * * *

We completed the apartment swap, ordered some new furniture, kept my infectious shivering at bay with over the counter meds, and eventually went in for that second CT scan at Gastro Health.

I remember it was as uneventful as the first one, and I got to try a new flavour of the EZ-EM contrast solution. Eventually, and over the following months, I got to try them all while several more scans were ordered.

Cappuccino and berry are my favourites by the way. The plain one tastes of orange and isn't bad either. Vanilla is pretty much the worst of the bunch.

When I mentioned this to the technician, he said, "When it gets to the point that you actually ENJOY these things, it's probably time to stop taking this stuff". Easier said than done of course, if doctors want to see a new CT scan every two weeks.

I believe he was called Ernesto, a wonderful man from Cuba, who put me right at ease in the situation I was in. He told me that his son was suffering from ulcerative colitis, and in between regular surgeries, he kept his condition under control with medication.

* * * * *

This particular scan was scheduled for a Friday afternoon, and it turned out to be slightly more crazy than the previous one. Right after the procedure, Ernesto told me that I should wait outside while he burned a CD of the images for me - just in case. That was a welcome treat. I was of course very interested in those images, and to see what I looked like on the inside. I was looking forward to playing around with whatever extraterrestrial format said CD was going to be in and see what I could extract from it once I got home.

Only moments later he appeared again, albeit without the promised CD. "The radiologist just had a quick look at your images, and he would like you to wait just a moment longer until he gets a chance to have another look. It won't be long, but he's found something he'd rather investigate."

That didn't sound promising... could it have been more than an infection after all? Was the infection more threatening than we had all assumed so far? Would we hit rush hour traffic on our way home as a result of hanging around waiting here? Where would we have lunch in this area, should we not get home in time for tea?

Go To ER. Now.

After waiting for what felt like several hours, a nurse finally came out with some papers in her hands. She was young, friendly, but completely emotionless. Slightly creepy probably describes her best. Was she related to one of them Robot Nurses I had met back in the UK?

She told us that she had just spoken to the radiologist, and that I'm showing signs and symptoms of so much infection that they feared something drastic is about to happen to my intestines. Apparently the infection was so bad that it had made my intestines very thin and weak; there was a realistic chance of them literally bursting.

To prevent this from happening we should not go home and instead head straight to the nearest Emergency Room at Baptist Hospital.

Regardless of how well I may have felt, the radiologist apparently knew better. He felt that I should not take a chance and have whatever this problem was seen to right away, especially given that it was the weekend and all.

Perplexed, in shock, and not quite able to comprehend what I was hearing, I kept asking "WHAT? EMERGENCY ROOM? ME? NOW?". But despite protests and disbelief, the nurse just kept repeating what she already said and gave me a bunch of admission papers.

The next thing I knew, we were on our way to Baptist Hospital, walking in to ER, half crying. All I kept thinking was that this whole affair had all the signs and symptoms of a classic rip-off. As if a bunch of matchstick men had just conned us out of our savings. Not only did they talk us into paying for several unnecessary CT scans; they were eager to go for the jugular by having the nearby hospital scam us out of everything we had.

Apart from feeling shocked, slightly horrified and extremely stupid at the same time, I felt completely fine - how could anyone tell me I was in grave danger, yet keep up an air of mystery at the same time?

* * * * *

As I mentioned before, this visit was my first ever "being the ER patient" experience at any hospital. Much like at Dr. De Leon's office, a triage nurse took my vitals when we were checked in and inquired about why I was there.

I showed her the admission form, on which it only mentioned "abnormal CT scan results" and "acute infection of the abdomen", but not why I was so close to death's edge that it would warrant a trip to the Emergency Room.

Before sending us to the crowded inner workings of Baptist ER, all she said was, "The doctors will examine you, and they'll let you know what's going on".

We waited a short while for our very own darkened and slightly creepy room with a bed, all chilled down to the point of one degree above meat locker temperature.

Moments later an ER nurse came in and advised me to put on a gown that made me even colder. Next I was taped up with all kinds of electrodes and monitoring equipment. I also received a rather hefty permanent 18 gauge needle in my right arm and some blood was drawn. Then I was told that at some point a doctor would come in to see me. Other than that, I was not to eat or drink anything and remain calm.

All we could do now was to play the Waiting Game. Hour after hour passed without any incidents, or visits from a doctor. Julia and I just soaked up the busy and hectic atmosphere of what happens behind the scenes of an Emergency Room on a Friday afternoon.

On some level this was all rather entertaining, but deep down I had the feeling that it was the beginning of a steep journey into the realms of darkness.

Nothing much happened for several hours. We patiently waited, whileJulia explored where to get a snack and a chilled drink from. At some point, a gentlemen came in who needed some personal details from us. He wanted to know where they should send the bill. Other than that, we waited.

Then all of a sudden, the door burst open and a slightly hectic ER doctor crashed into our room. He was not alone and had a nurse practitioner with him. The latter was typing madly on a portable setup that combined a laptop, some files and several drawers of medical supplies. I was impressed!

"Tell me all about yourself and your case" he said. He was busy reading my reports while typing on his mobile phone simultaneously. I was briefly wondering how much of my story would get through to him, but he assured me that he would listen attentively thanks to his superpower of multitasking.

The nurse practitioner he had with him didn't really speak. In a weird way, he reminded me of Batman, and she reminded me of Robin.

I told him everything I knew, including an abbreviated version as to where I was from. I tried to be as brief as possible, but as you can imagine that's not an easy task when you don't know what's relevant and what is not.

I ended my speech with "Could you tell me why I'm actually here?"

He took a deep breath and said, "From what I can see, you show signs of acute bowel inflammation. The danger is that this may lead to bowel perforations, and that would require immediate surgery.

That's why they've sent you here, and probably because it's Friday afternoon and the gastro facility just didn't want it on their conscience that you develop something drastic over the weekend. But that's just a guess. I'm here to assess what needs to be done right away, and then over the next few hours or so, a great many other doctors will come and see you and basically all ask the same questions. Together they'll make a decision as to what's going to happen next."

I loved his honest approach.

"So what I'm going to do now", he continued, "is to prescribe you a strong antibiotic to tame that infection, whatever it is, and then if they want to do some surgery then those other doctors would decide that".

I asked him what said surgery would entail and how far away from such an option he thought I was at this point.

"To be honest, we don't know what it is yet. You probably have some Broken Bowels somewhere, they'll have to run more tests to figure it out. But it'll all happen in the next few hours, don't worry".

He hesitated for a moment, before adding one of the funniest lines I've ever heard a doctor say: "I could probably do the surgery myself, but I'd have to watch some YouTube videos and it could all get messy. I'd rather leave it to the 'professionals' to do that. You see, those people drive BMWs, and I only drive a Toyota, so I'll just stick to making sure the patient is comfortable and move on".

He finished with "We probably won't see each other again, but it was very nice meeting you, and I'm sure you'll be out of here in a few days".

Then he vanished without a trace. I only bumped into him one more time while I was on my way to the bathroom shortly thereafter. He was smiling and nodding at me while I walked by. I thought at first he was talking to me, but I guess when he said, "...the rest is probably just breast tissue...", I realised that he was on the phone, and that sentence was probably meant for the other party.

I really liked the man. I believe his name was Dr. Alex Palma, and he's definitely a candidate for the top ten list of colourful characters in this story.

* * * * *

Hours later, sometime in the middle of the night, my bed and I were wheeled into a single room somewhere on the second floor of the hospital. This is where Julia and I spent the next four days without anything other than being given Zosyn antibiotics three times a day through my 18 gauge intravenous line.

We had nothing with us, other than our mobile phones and the clothes we were wearing. Perhaps a Kindle to pass the time, but that was it. Lucky for us, the gift shop on the ground floor was selling compatible chargers, so our gadgets could have some lunch.

Speaking of lunch, I was fed three times a day with very good hospital food. There was even a menu I could fill out for the next day. Using multiple choice tick boxes, I could pick what was to be served for breakfast, lunch and dinner. For anything else there was the Oasis Café downstairs.

Other than that, the next four days just passed by without incidents. I was seen by about three doctors a day: one was the general hospital doctor, one was a very cheerful infections disease specialist named Dr. Gaviria, and another was a very kind and mild mannered gastro internist named Dr. Parra. I would continue my treatment outside the hospital with the latter two gentlemen.

All of them had the same two questions when they dropped by. "How are you feeling today?" and "Do you have any pain?"

Since I felt fine since the day of my arrival, and nothing about my wellbeing had actually changed, I could truthfully answer with "I feel great - just like I did yesterday".

I guess I must have confused every doctor I’ve met in hospital. They all assumed that I should be in some kind of pain, which I was not.

Not yet anyway.

Home Infusion Days

The two doctors I met at the hospital would play a bigger role in the events to come: Dr. Javier Parra, a gastro internist who would later be responsible for my first colonoscopy, and Dr. Milton Gaviria, an infectious disease specialist who would oversee my ongoing abdominal infection.

It was the latter who decided that I should go home on the fourth day and prescribed something called Invanz, a powerful broad-spectrum antibiotic given once every day intravenously. This medication was to be administered in the comfort of my own home, for an initial duration of at least 6 weeks.

Julia and I both liked the idea in principle, but I wasn't sure how I would get anything intravenous into my blood stream other than with a needle. Was Dr. Gaviria thinking I should give myself an injection every day, as in ram a needle into my arm? Was that safe? Or even legal for a lay man like myself?

But as it is in life when there are problems, oftentimes there are solutions. In our case, to infuse antibiotics into me at home without a needle, the solution was known as a PICC line.

PICC stands for "Peripherally Inserted Central Catheter", which is a rather long thin plastic tube that's placed in your right arm. It's at least 3 feet long, depending on your body size, and reaches from a vein in your right arm to the top of you heart. A sterile dressing holds the line in place, but to avoid infections, said dressing has to be changed once a week by a professional.

The other end of the line then dangles out of your arm, a few inches below the shoulder, attached to which is an inverted plastic screw known as a Luer Lock. That's an internationally standardised system, which lets us connect all kinds of paraphernalia with a simple twist. Anything from pre-filled syringes of heparin lock or saline solution to gravity infusion systems can be attached without using needles.

It was an ingenious idea!

When we stayed at Baptist Hospital, there was only one person who could administer this PICC line miracle. He was called Joey, and this single job kept him busy in excess of 12 hours a day, 7 days a week. I had the pleasure of meeting him twice, once in 2015 and during another hospital stint in 2016.

Placing a PICC line is not as easy as just poking a hole and ramming in a plastic hose until you feel a tickle in your heart. That would be crazy! Instead, Joey had an ultrasonic monitor with which he could guide the tip of the PICC line to just the right spot in my body. The miracles of modern technology! What will they think of next?

PICC lines are not just used for home infusions though. It's a very convenient way to administer strong or even toxic medication to patients rather than through a needle in their arm. Those needle sites only last a few days until the tissue starts to swell and things get painful and messy. Or even worse, they start burning madly when certain medications are administered.

Worse yet, some patients cannot be stuck with needles. I mean that quite literally: even the most seasoned nurses are sometimes unable to prick an artery (or is it a vein...? I don't remember the difference). With a PICC line however, such issues can be overcome easily.

Meanwhile, back at home, I'd get a chilled box of medications and other supplies sent once a week. This would allow me to mix a 500ml bag of saline solution with the Invanz powder, attach it to a plastic tube, hang it high onto a gravity pole (which was also delivered), and attach the other end to my PICC line. This would give me the infusion I needed.

One application would take just over 30 minutes, with a 10-15 minute preparation time. That's not too bad considering that there's no need to travel to a faraway doctor's office or hospital every a day, not to mention the cost this would incur. Because we were not insured, a daily visit to a doctor's office would have cost us $150 per day plus medication. This way, we only had to pay for the medication (I don't remember how much that was on a cash deal).

* * * * *

To show us the process for the first few times, we had a home healthcare nurse drop by for a visit. George was his name. He was a rather interesting character to put it mildly.

George (or more likely Jorge) was from Cuba and seemingly the only nurse available in Miami Beach. He was extremely unreliable in regards to his arrival time, never picked up his phone or responded to messages, was hopelessly overworked, but on the plus side, he had an extensive and very colourful watch collection. Nice guy for sure, but not somebody you'd want to rely on for ongoing treatment or advice on health issues.

His favourite catch phrases included "Mr. Jay - Number One", "Why you no call me, Papi?" and "That's America for you". He didn't like the frequent use of disposable medical supplies that, although being sterile and saving lives, generate too much plastic waste.

George often told us about how such medical issues are handled in Cuba, which often made us wonder how Cuban people are still alive (but it also explained why many seek asylum over here in Miami).

Once we managed to get the hang of mixing and applying the antibiotics properly, George would come back once every week to change my PICC line dressing. He suggested that after each infusion, I should treat myself to a cortadito, a short Cuban coffee that's ubiquitous in the cafes in our neighbourhood.

I have fond memories of him, in particular when he used to wash his hands in preparation for his treatment, commenting on his looks in the bathroom with the words, "I must have this mirror, I look great in it".

Every four weeks I would go and see Dr. Gaviria in Sunset, a long and tiring day trip on public transport from South Beach. Without fail, he always ordered a CT scan that would be expensive, show little to no change to the last one, and would most likely not be very good for my health.

Fun Fact: due to the amount of images taken during the procedure, a regular abdominal CT scan uses the equivalent dosage of 400 x-ray images.

We kept repeating this pattern for at least three months. I was wondering when I would start glowing in the dark. On several occasions, Dr. Gaviria changed the medication from Invanz to Zosyn or Merrem. All of these were still antibiotics, and each one was responsible for killing different strands of bacteria in a wider or narrower spectrum. Sometimes the dosage would change from one infusion per day to a whopping three infusions per day.

The latter would present logistical challenges: When was the best time to administer the drug in 8 hour intervals? Considering a whole infusion would take little under an hour, the day just got nearly three hours shorter than usual. In addition, to do their best work, antibiotics need to be administered as evenly spread out as possible.

You can't just give yourself two in the morning and another one sometime in the evening. Those evil bacteria might survive on a regimen like that, not to mention the potential side effects such lax administration could have on my already weakened human body.

So we had to come up with a time slot every eight hours to cover a full day. But what was a good time to do that? Start too late in the morning, and you'll crash into your bedtime or afternoon appointments. Start too early, and you'll end up having to get up at 5am every day or even earlier.

In the end we settled for 6am, 2pm and 10pm, a heathy medium and a good compromise for everyone involved. It would allow us not to get up too early and catch some sleep during the night, while not compromising any of those frequent appointments with doctor's offices and hospitals.

* * * * *

After 3 months, in October 2015, having been through more CT scans than I can recall, Dr. Gaviria decided the infection was as low as it would go. He recommended that Dr. Parra should go ahead with a colonoscopy so that we could see what else was going on with my guts.

The trouble was that we were still not insured, and we wouldn't be able to get insurance cover until the 1st of January 2016. Without insurance, it would have been impossible to afford not only the colonoscopy procedure, but also whatever else the doctors had planned for us afterwards.

* * * * *

You might wonder why we couldn't get health insurance any earlier than the first of January the following year. Simple capitalistic logic would dictate that if you're ready to give away a stash of cash every month, there would be an ample supply of companies ready to take it away from you.

But in the US health insurance market, that's not quite the case. There are some rather bizarre regulations at play over here, put in place by people who would probably be better off behind bars rather than running important businesses that ruin people's livelihoods for a living.

One such rule is that if you are already insured, you may change into another plan or change to a different provider any time during the year.

But if you are not insured at all, you must wait until the new billing period starts, which is only once every year (namely on the first of January). You must pick a plan starting at the beginning of November, and you must submit it before December for this plan to kick in by January. If you miss this important deadline, your coverage only starts in February. If you miss submitting it altogether, you cannot get coverage until January the year after that.

I know you think I'm joking, but it's true! Although this would be hilarious in a science fiction comedy about a highly bureaucratic and disorganised dystopian world, this ridiculous clause puts millions of Americans at serious risk or drives them into financial difficulties.

The only other option as an uninsured patient is to pay cash out of your own pocket, until the time is right to sign that insurance deal. Providers give "generous cash discounts" in such cases - like we frequently did before 2016.

In case I didn't adequately describe it, and to put it in plainer terms, this system sucks. And everyone knows it too, including those working in the medical profession.

Pardon me if I don't quite get the logic behind such shenanigans; let me see if I understand it correctly: I can buy semi-automatic weapons on the high street without a waiting period. That's totally fine, and relatively easy. But starting a health insurance plan halfway through the year is downright impossible. Is that right?

I know, I know, I digress. I'm a mere guest in these United States, and perhaps I should keep my overseas opinions to myself. It's just that being confronted at a time of need with government regulations that are so... incredibly... what's the word I'm looking for... SHIT probably describes it best, one begins to wonder how people in the US have survived this long.

Mind you, these regulations were true even after Mr. Obama's Affordable Healthcare Act. I shudder to think what the healthcare landscape might have looked like before such changes.

At least with Obamacare in place, there is the advantage of applying forthcoming tax credits directly onto this years's monthly healthcare payments, giving users heavy discounts on what they have to pay for their health insurances.

* * * * *

In light of all this insurance mumbo-jumbo, and because we simply didn't have the cash, we decided not make that colonoscopy appointment until January 2016. I knew this was risky, and I was simply hoping that the infection wouldn't come back for a while.

Dr. Gaviria and Dr. Parra understood our decision, even though neither of them supported it. They must have seen people in our position one too many times, and like many other Americans, we just didn't have a choice but to wait it out.

The Colon Surgeon

While we waited for January to arrive, Dr. Parra suggested that we meet with a colon surgeon. Just on the off-chance that if whatever I had going on might require surgery. He said that it would be beneficial to have someone in place who was familiar with my case. That way, no matter what happened, someone could take care of me on short notice.

He recommended Dr. Marcos Szomstein, also from the Gastro Health group, who had an office just across the road on Medical Mile. It was right next to a fantastic fresh produce store called The Norman Brothers' "Fresh Approach". Think of a smaller version of Amazon Whole Foods(TM) with a chilled out atmosphere.

They have seriously good produce and amazing lunches. It looks like a large open market on the inside with plenty of outdoor seating. Worth the journey if you're ever in the neighbourhood (or should you have the need to see a good colon surgeon).

I don't mind telling you that I was very ambivalent about said meeting. I didn't know what to expect, and it would cost us $350 in cash just to meet the man. I had fantasies that with him being a surgeon, he would probably think with knives rather than try alternative treatment first.

And seriously, who in their right mind would look forward to meeting someone who's eager to cut you open and remove vital organs at a moment's notice.

I had spoken to a client of mine about a potential surgery in the future, and had openly shared my worries and anxiety about it. She told me not to be afraid, because (and I quote), "for surgeons, chopping bits off you is like catching the bus for other people".

While I totally understand her comforting intentions, losing non-regrowing body parts is nothing anyone could possibly be looking forward to. Me included! I freely admit that I didn't want to meet the man, or acknowledge that surgery was very likely on the cards in the near future.

While we sat in Dr. Szomstein's office, nervous and full of anticipation, I got a chance to admire a lot of memorabilia on the shelves that he must have collected over the years. Some of it looked like personal items, but most of it appeared to be gifts from appreciative ex-patients. And there was a LOT of it.

For example, a mock trophy for "best surgeon", displaying a golden figurine bent over with something like a long stick inserted into his backside. Or plenty of joke books about farts and many other colon related topics. But there were also very serious and valuable items, like signed baseballs and bats.

If Dr. Szomstein had left a trail of disappointed patients behind, it would have been very unlikely that he would have amassed such a wonderfully humorous collection of bric-a-brac over the years. His Healthgrades profile confirmed that he's up there in the above 95% satisfaction with patients category. So really, I had nothing to worry about. I wish I had known this at the time of our meeting.

When he walked into his office, Dr. Szomstein was dressed in green surgical scrubs, speaking Spanish into a small audio recorder. He was obviously a busy man who wasn't afraid to get his hands dirty on short notice, not one of those doctors in suits who solve cases purely with the power of their mind (like my wife's doctor, whom we had met about her ankle issue back in London). I immediately liked that about Dr. Szomstein.

He was a tall man from Venezuela, in his late forties perhaps, difficult to judge his age, but then I find it difficult to judge anybody's age. He greeted us, saying he's had a look at the scans, and asked how he could help.

I explained that Dr. Parra had recommended him, and that he thought it was a good idea to meet. I also admitted that I wasn't quite sure why I was even here in his office, because I was hoping that any type of surgery could perhaps be avoided.

Dr. Szomstein smiled at me, bent forward from behind his desk slightly. He looked me in the eye with the experience of someone who had heard this reaction before.

"You're here because in all likelihood, sooner or later, you're going to need surgery. Right now we have no idea what's wrong with you. Could be ulcerative colitis, could be diverticulitis, could be cancer. Whatever it is, there's a piece of bowel that's broken, and that's not going to be repairable. So it'll have to be cut out, and then you'll be back to normal".

Piece cut out. And the C word. Exactly what I was trying to avoid.

"And that's if you're lucky", he continued. "If you're not so lucky, and we find that you have something like colitis, you may end up with chronic infections for the rest of your life. Then we'll have to repeat the process, or you may lose your whole colon. But we don't know that yet, which is why that colonoscopy is so important".

I explained the insurance situation, and that as soon as January arrived, we'd take care of that. "Whenever you're ready, I'm here for you", he said.

Dr. Szomstein examined me briefly, and he could feel the large obstruction in my abdomen. "It's big", he said, "but that's still a bit of inflammation making it bigger than it probably is. Let's get this done sooner rather than later".

We parted on very good terms, and I was glad to have made the connection. I didn't know it at the time, but Dr. Szomstein would play a huge role over the next couple of years in my upcoming battle against cancer, a much bigger role than I could ever have imagined.

Infection 2.0

October and November 2015 came and went without any incidents. For the most part, we were frantically starting to research and hunt for the right insurance plan so that we'd be covered for the year ahead. We had a feeling this was only the beginning of a rocky road.

Julia and I had settled for a plan called Blue Select, courtesy of a company called Florida Blue. They were a licensee for the state of Florida of the Blue Cross/Blue Shield group, a large nationwide health insurance company.

The plan seemed to offer relatively low monthly payments with a rather hefty in-network deductible, but it was certainly cheaper for the whole year than what we had already been shilling out in cash payments for my various treatments.

Or so we thought. As we were to learn, caveats lurk everywhere in this impenetrable minefield of US health insurance madness.

Fun Fact: a deductible in a health insurance plan is a fictitious amount of money that the patient has to cover before the insurance actually starts to pay anything. For example, if a deductible is $5,000, you have to pay that as you go for treatments that are not covered by the plan, plus whatever the monthly cost of the insurance plan is. Once the deductible is reached, treatment is free.

Plans with a cheaper monthly premium often have a higher deductible, while more expensive plans have a lower deductible, or no deductible at all.

* * * * *

December wasn't quite so kind to us. My infection seemed to have flared up again, causing me to have that teeth-shattering extreme shivering again, combined with frequently elevated temperatures.

As if that was not enough, I had started to notice the odd and very spurious blood clot creeping into my urine. We didn't know what it was at the time, but I made a mental note of this as "odd stuff to mention". Lucky for us, we already had an appointment to see Dr. Gaviria a few days later.

At the meeting, we explained that in only a few weeks time we'd be insured and ready to embark on adventures big and small (such as that planned colonoscopy so we'd get a better picture about my actual problem).

But for the time being, we were wondering, due to the fact that we were still uninsured and all, was there anything he could do to keep this infection from getting worse, perhaps by the magic of some harmless pills that I might take until then.

"Maybe", Dr. Gaviria said. He thought about it for a moment and prescribed me a 30 day course of two strong antibiotics: Flagyl (3x a day), and Cipro (2x a day).

Fun Facts: Flagyl, also known by its more colourful name Metronidazole, is one of the most putrid medications I have ever tasted. Take it for longer than three days and everything you'll eat or drink will now taste of Flagyl.

Also, taking Flagyl and Cipro at the same time is not a good idea! After a week of doing that I felt worse for wear, and it knocked me out so bad that I had to lie down for an hour after swallowing them, just to overcome the effect. Very unusual for me!

I only found out after having taken both medications for a whole month that this wasn't such a good idea. Dr. Gaviria told me that it would have been much easier on my body had I given it one or two hours in between medications, and that I should have instead taken them separately.

Sigh. It's the stuff you wish they had mentioned to you beforehand.

As terrible as those meds tasted, they did at least keep that infection of mine in check. We sailed through Christmas into January 2016, and back into Dr. Parra's office for that long awaited colonoscopy.

Now fully health insured, or so we thought, we'd finally find out what exactly was going on in my colon and what could be done to rectify the situation swiftly and efficiently.

* * * * *

On the morning of the procedure, 7am sharp, we found a very packed Gastro Health office full of people apparently all waiting. They only did two procedures there, colonoscopies and endoscopies. I kept thinking that I was obviously not the only one who had fasted and cleaned out their intestines in preparation for this situation. I was in good company.

When it was my turn, we were seen into a mini-version of a hospital setup, with plenty of beds and curtains, busy nurses and anaesthesiologists almost tripping over each other everywhere. We even spotted Dr. Szomstein briefly and were surprised that he had his fingers in this department as well.

For the first time in my life, I was going to receive a narcotic that would put me completely to sleep, without a breathing tube though. Believe it or not, I was looking forward to the experience.

I had heard a lot about the moment when they tell you to count backwards from 10, and you can just about make it to 9, and then you're out. I always wondered what that might feel like.

After a myriad of questions about allergies, dentures and God knows what else, I received an IV line into my arm and was rolled into the treatment room. I had a quick chat with a masked and appropriately dressed Dr. Parra. We both joked with the anaesthesiologist and nurse about the "going under" procedure.

After what appeared to be only a few seconds later, I was awake again in a different room. It wasn't even like going to sleep and waking up again, it was more like a jump cut without an establishing shot to the next scene.

I remember laughing because I couldn't quite believe it. My wife was there, and she had assumed my amusement was a reaction to the drugs that I had, when in reality I just found it terribly funny how this magic formula could literally switch off a human being with such little effort.

Can you imagine doing that before a long distance flight? Who cares how long it takes in reality, Sydney International is only seconds away from LA at this rate. What a beautiful world this could be! [cue Donald Fagen's I.G.Y (if we get clearance)]

* * * * *

The harsh reality set in only moments later when Dr. Parra came in to see us. He told us that he could only go in as deep as 6 inches (15cm). He had discovered a huge blockage in my colon, and his colonoscope couldn't get past it even if he tried.

Looking very sad and disturbed, he promptly produced a report with a colourful picture of the little bugger. I remember posting it on Facebook back then. It looked like the inside of a pink hose with shrivelled rings on either side, quite harmless to the naked eye. Cute even. Certainly not evil.

He said, "I've seen this too many times before. I can't be certain, but it looks like cancer tissue to me. I'm so sorry, guys!"

We were advised (again) to go straight to the Baptist Emergency Room and were given appropriate admission papers (again). The extent and internal size of the tumour was undetermined at the time. It looked as if we might get away with a relatively straightforward and easy surgery procedure that would remove just a small bit of my colon, if nothing metastatic was to be found. Details could only be determined in the operating theatre during surgery though.

In all honesty, I wasn't even that shaken or worried by Dr. Parra's findings. Perhaps it was a byproduct of the anaesthetics, or maybe it was due to the thought that I'd soon experience it again. It's seriously weird what you think of in those crucial moments of a journey.

Since we had been through the "go straight to ER" routine after one of my previous CT scans, we actually came ready and prepared to the colonoscopy session. Julia had packed a small suitcase with overnight supplies and electronic gadgets - just in case we'd end up in a similar scenario as last time. Live and learn, as they say.

Even though the C word wasn't quite what we had expected to hear, we had an inkling that our journey on this fateful day might not end up back at home in time for tea.

The First Surgery

An hour or so later we found ourselves at the Baptist Hospital's Emergency Room again. After the general admission check-in and triage procedure we knew by now, we were seen to a rather undefined area of the ER, somewhere in between beds and random chairs and nurses going about their business.

When a preliminary ER doctor came to see us, we explained the situation relatively light-heartedly, and all she said was "well if it's just a harmless tumour, we'll simply chop it out".

I liked that. This is how we would approach this whole business. Just chop it out, and we'll say no more about it. What else could possibly go wrong with me that day?

When a bed became free, we were seen by a trio of doctors, two senior ones and a younger man who either volunteered to take the lead, or was doing so because the two senior guys were evaluating how well he was doing.

I explained the situation to them, and I also mentioned that as part of the colonoscopy preparation, I had cleared myself out and hadn't eaten since the evening before. Perhaps this might help depending on when they'd like to operate on me.

So the younger doctor suggested, why don't I have some food and we'll see how it goes. He probably had the best intentions, but I remember vividly that all of us were looking at each other, thinking what a terrible idea that would have been. I guess the rest of us knew that I could be under the knife before the day is out.

* * * * *

An hour or two later, Dr. Szomstein walked in and said, "Hey, I've seen the report. Bad luck indeed! But no worries, I'll see if we can get you on the table by tomorrow morning. You're already prepped, so we can go right ahead".

I really liked how easy he made it sound, with a smile on his face, as if nothing could go wrong. It's really important to spread good vibes in times like these, and it means a lot when it comes from a doctor in charge. It instilled just the right dose of confidence, and it seemed like I was in very capable hands here. And just as quickly, he disappeared again.

A little while later I was wheeled to a bed upstairs, was given some intravenous antibiotics, and waited patiently for that surgery appointment in the morning. I remember how pleasantly surprised I was as to how quickly everything fell into place. I was glad that we had made the effort to make a connection with Dr. Szomstein many months earlier.

* * * * *

The next morning at 8am sharp, the surgery was about to commence. I wasn't treated as an emergency, but rather like an outpatient who had just walked in from the street for a standard appointment - undoubtedly much nicer than an emergency procedure.

I was to take a shower in the morning at 5am with special anti-microbial soap, not drink any water since midnight prior, and I was given a couple of blood transfusions because my haemoglobin levels were very low.

As it turns out I was suffering from anaemia, a condition in which due to reduced red blood cell count, not enough oxygen can be transported by the blood stream. As a result people may feel tired or short of breath, and may have difficulties exercising. I had all those symptoms but never gave it a second thought, believing that it was probably due to the infection I had.

Low haemoglobin levels before going into surgery could mean a 40% higher risk of death during or shortly after the procedure, depending on the extent of the operation. That's why surgeons understandably do not like operating on anaemic patients.

Fun Fact: Over 30% of this planet's population is suffering from anaemia. That's one in three people. You may be one of them! Anaemia can be caused by internal blood loss or a poor diet. Best go and check with your doctor when you see him next time.

I remember discussing with the nurse whose blood I was going to be given. He joked about it: "Well we don't have the person's name, but I can tell you he's an athlete, extremely fit and healthy, helps kids after school with their football practice, and on Sunday's he volunteers in a soup kitchen".

Very funny! No matter who the person was, I'm grateful for his or her donation. I had two whole pints of 100% genuine goodness going into my blood stream and have survived the surgery.

Fun Fact: I've received several other blood transfusions over the years. Although my blood type is the relatively rare AB+ (as in AB positive), I've only ever received A+ type blood.

From what I understand, it's all about antibodies: A type blood has B antibodies, while B type blood has A antibodies. When A blood meets A antibodies, the two of them coagulate (i.e. create clumps), and as a result kill you. AB type blood doesn't have any antibodies, which means that I could receive either A or B blood without serious coagulation issues, provided that the donor blood has the same Rhesus factor as mine (Rh positive in my case).

Alternatively I could receive AB+ type blood, but I guess due to its rarity it's just never readily available in the blood fridge (only 3% of our planet's population have AB+ type blood).

* * * * *

Shortly before 8am, I was wheeled downstairs into the pre-op suite, where the anaesthesiologist and OR nurses were to meet me. They asked me a lot of questions as to how much I knew was going to happen, and explained the consequences of what could happen during the procedure.

I also met Dr. Szomstein again, who told me that he was going to attempt the process laparoscopically, using minimally invasive keyhole surgery. He could not make any promises if this was going to be successful or not, so there was a chance that he might have to cut me wide open. It would remain the "element of surprise".

Other than being wheeled into the OR and falling asleep, I don't remember much of anything.

* * * * *

When I woke up again, I was cold and dizzy. Just like before, it felt like it was only moments later. In reality of course, many hours had passed and it was by now in the middle of the night. The procedure had taken hours, and my recovery time several hours more.

Eventually I saw my wife. She explained the mess as to what Dr. Szomstein found inside of me: that colon obstruction was indeed a dangerous tumour. It had grown much bigger than we thought and had spread beyond our wildest imagination.

There were fistulas stretching from the 20cm tumour in the sigmoid colon to my appendix, the small intestine, the bladder and several other areas. Although Dr. Szomstein did indeed start with the minimally invasive procedure, he converted it into what's known as an Open Hartmann's Procedure, also known as a proctosigmoidectomy. This meant that I had a big fat surgery scar to remind me of this ordeal, reaching from two inches above my belly button to the top of my pubic bone (about 10" in total I'd say, or 18cm).

My sigmoid colon, caecum and appendix had been removed, along with a small piece of my bladder. The latter was so fragile that suture wouldn't hold, so he had to use glue to patch it up and close the resulting hole. Fascinating to think that it held up so well.

I was in no pain, but I did have a pump full of Morphine attached to me. I also had a button in my hand so that I could release a small dosage of it into my blood stream at my own leisure. There was no need to call for a nurse when pain would creep up on me. Quite a sophisticated way of letting the patient decide how much medication he wants and when.

When the pump was eventually disconnected a few days later, the nurse told us that I had used less than 50% of what was in the initial container. I guess my pain threshold was higher than average.

Dr. Szomstein came by at 2am in the morning to look in on me. We were half asleep and were pleasantly surprised by such a late call. He looked fresh as a daisy, and I still have no idea how he could have done an 18 hour day and not even show a hint of tiredness. It will forever remain his secret.

It was great to see him again and hear him explain briefly how big that tumour really was. He believed we caught it in time, before it could cause any greater damage than it already had. He speculated that a tumour that size would have been growing for 3-5 years - a scary thought of how long I had this silent killer growing in me already, going completely unnoticed.

Other than that, I remember being extremely tired and only had one desire: sleep. The nurses encouraged me to start walking around by the second day, something that seemed more or less impossible from where I was lying. However, I managed to have short trips around the corridor in a dizzy state and with very small and slow baby steps, assisted by my wife.

* * * * *

One thing that did catch me by surprise was that I now had a colostomy bag attached on the left hand side of my tummy. I don't mind telling you this was a bit of a shock.

Me? A frigging shit bag? Haven't I been through enough? How am I going to live with that? I had no idea what to think.

To make matters worse, the thing they attached during surgery looks very different and is a lot bulkier than the regular bags I was going to use going forward. But not knowing that adds to the scare factor. Because of fresh scars, raw tissue and plenty of bandages, such a colostomy bag really feels like they did a hatchet job on you.

Dr. Szomstein explained that in order for all those fresh connections and cuts to heal properly, it was better to disconnect my GI tract just before the rectum and then reverse the diversion within 6 months. This would be after the (hopefully) successful chemotherapy.

It was only a small price to pay, albeit an unexpected one with which my psyche had to come to terms with. This was in addition to all the other news that I had received that day.

Many patients who find themselves in this situation have overwhelming thoughts about getting any type of ostomy, no matter if it's as a "surprise gift" or as part of a planned procedure. Myself included of course.

I knew going in that should anyone give my colon the nip/tuck treatment, there was always going to be a chance that I would end up with a bag. From what I understand, thoughts like these are perfectly normal: "How will I ever cope with that", "how embarrassing", "my life will never be the same again", "how terrible", the list goes on.

Fact is, you'll get used to it much quicker than you think, just as soon as you find out about the tools that are available to deal with that thing. Companies like ConvaTec and Coloplast have a huge arsenal of supplies available that make it possible to deal with any type of ostomy. These companies are very generous with test supplies. All you have to do is call them and explain your situation.

There are specialised ostomy nurses in hospital, who are more than willing to give you a hand. They're always happy to share not only technical knowledge about how to use those supplies, but also address all those psychological issues you have going into a difficult situation like this.

It may require some digging and asking, but don't be afraid to pester and pepper them with questions. They love it, and the more you ask, the more you'll learn.

On top of all that, there are support groups you can visit, not to mention a plethora of YouTube videos and blog posts from millions of users around the world. There are plenty of forums on the internet in which you can post questions or simply read what others are going through.

Trust me when I say, should you get a bag, living with an ostomy will become very normal before you know it

Just to clarify some terms here: an "ostomy" is a word used for an artificial exit from your body, ending in a bag that collects either stool or urine.

Specifically, there's

- a colostomy (exit from colon or large intestine),

- an ileostomy (exit from the small intestine),

- and a urostomy (exit from an ileal conduit to which your ureters are sewn, for urine collection).

To form any of these things, a so called stoma is created, which is a hole in your tummy to which the end of your GI tract is sewn.

Fun Fact: a stoma is any type of opening in the otherwise closed meat sack we call The Human Body. Our mouth and our nostrils for example are stomas, albeit natural rather than artificial ones.

I had the unfortunate pleasure of living with both a colostomy and an ileostomy, and I'll tell you more about my experiences and the differences of living with either type in a later chapter.

Speaking of new things: I had discovered yet another thing sticking out of my body where it didn't belong. I woke up with an indwelling catheter. I've never had one before, and I had always imagined those to be extremely uncomfortable. That's definitely true, but only when you have to you move around with one.

If all you do is lie in a single position, like a hospital bed, it's a very convenient way of not having to deal with bodily functions and bathroom visits. A catheter lets you rest in peace so that your body can fully focus on healing any tissue that needs looking after.

Over the course of my cancer treatment, I had the dubious pleasure of using what feels like hundreds of catheters. I had anything from smaller ones to larger ones, from standard indwelling ones to external condom style catheters. I even had a suprapubic one.

I'll tell you more about the differences later, and what to expect with either type, as well as how to cope when problems arise.

Brief Recovery

We spent a total of fifteen days at Baptist Hospital before finally being discharged. During this time a lot of testing happened, and we met more doctors than I can recall. I remember there to be a CT scan, a PET scan, a cystogram, and probably a great many other things.

There was also that incident when my feet started swelling to the size of footballs. Apparently I had retained too much of the fluids they had administered, and my kidneys started to fail. It was so bad that a nephrologist was consulted, and Dr. Gaviria changed my antibiotics from one that was excreted via the kidneys to one that was excreted via the liver.

Most of the time I was under heavy drugs and probably not as lucid as I could have been, which explains why one doctor in particular has been completely erased from my memory (to the great amusement of my wife).

On the day of our discharge, a friendly nurse came in to remove my indwelling catheter, so that I could go home without a second bag. I already had a more or less permanent colostomy bag to take care of, so less baggage was definitely better for me.

The nurse told me that if I had any trouble urinating over the next 24 hours, I should come back and check into ER immediately. I must admit that this worried me a little bit: had Dr. Szomstein not performed a little nip/tuck job on my bladder, known as a partial cystectomy? Albeit only a small piece was removed, didn't this need time to heal?

Apparently not, the nurse said, otherwise the doctor's orders would have been very different. I only thought about this briefly, being keen to go back home and have a hint of normality joining our lives again.

Besides, the real fun started when it was time to start looking after that mysterious colostomy I had been given. Thankfully it wasn't as bad as I had imagined and mainly a matter of practice and routine.

To get me started on the right track, an ostomy nurse came to visit me regularly for the first two weeks, by the end of which I was more than happy to change the whole appliance by myself.

Julia and I had assumed that we would use the next four weeks or so to recover from our hospital holiday and for me to regain my strength, in preparation for the chemo treatment.

Things were looking good: my appetite was back, I could urinate as usual, the colostomy was working fine, and had it not been for that massive scary scar on my tummy, reminding me that the last two weeks were not a dream, I could have easily believed that my life was getting back on track.

We started going shopping again, albeit very slowly because I couldn't yet walk as fast as I once could. But I was getting there.

There Was A Second Tumour

I must admit that I feel a huge resistance to sharing this chapter with you. Not because I don't want you to know about it, but because it was one of the most painful experiences in this whole story - physically as well as mentally.

I'll try my best to stick to the facts here without getting too emotional, but excuse me if I'm rushing through this part a little bit.

* * * * *

Under most circumstances, and in healthy humans, urinating is a peaceful and relieving experience. It happens so automatically that we hardly even think about it. Did you know that the average human being urinates about six to ten times a day, depending on liquid intake? That's an average of 3000 times every month, or 36.000 times every year. All we have to do is relax and let go.

It is therefore all the more upsetting when this little automatic routine of ours is disturbed in any way. Like it happened in my case.

Less than a week after I was discharged, I felt something strange happening with my bladder: I had occasional blood clots in my urine. They weren't big at first, just weird little random clots that I could feel, occasionally stopping the steady flow of urine. It wasn't painful, just plain weird.

Having just had surgery on my bladder, I didn't think anything of it and thought this would be part of the normal healing process. But when the blood clots were starting to grow bigger and bigger, we were getting worried.

And of course there came the day when one of those massive clots was too big to fit through my urethra. Now THAT was painful! Because at that point, my bladder was full, and no matter how much I strained to pass urine, this sucker wouldn't come out.

This happened a few times, and usually after three or four attempts of giving it a rest and trying to urinate again a few minutes later, those larger blood clots would eventually come out - under great pain and great strain mind you. These clots looked like chopped pieces of beef liver, dark red and squidgy, about the size of my thumbs. I took pictures in case you're interested. We even kept a few specimens in a jar to show to a doctor over the next few days.

When those clots kept coming, and the pain kept increasing, we didn't know what to do. Wait for this to "sort itself out", or head straight back to ER in case the issue got worse.

I never had a problem with urination before, but as I was sitting there on my own, and I couldn't go - even though I had to pee really badly - I was having the worst types of thoughts: What happens to your bladder when urine can't be passed? What happens to your kidneys? What happens to your ureters? What would the professionals do to your body when they diagnose this as a problem?

It didn't take us long to make a joint executive decision: pack an overnight back, jump in a cab and head straight back into the Baptist Emergency Room.

* * * * *

It's interesting to observe how I can remain relatively calm under such circumstances, as if someone else takes control of the helm. Who else was going to help me but the friendly people in hospital? They'd know what to do, and no matter how ugly the solution to this puzzle would be like, I had no doubt that there was indeed a solution for me, and hopefully a very quick one.

Turns out that solution was way more complicated and difficult than either of us had expected.

When we arrived at Baptist, it was a Saturday evening, and the ER was full of people. Some had just ordered pizza, some were eating chicken dippers from the canteen. Every type of patient was there: highly pregnant women, those with broken legs, coughing people in wheelchairs, but most of us looked just like ordinary humans - like the two of us.

We registered, were triaged (again), and I was told that for someone who had surgery only a few weeks ago I looked particularly fit. That's good to hear, especially under the circumstances. I guess the triage nurse couldn't see the cold sweat building up on my forehead.

I must admit that I'm an extremely honest person. I understand that this is a character trait that doesn't always act in my own best interest. Sadly I currently don't know how to change this behaviour.

When the nurse asked me if I was in any immediate pain, on a scale of one to ten, I answered truthfully. I said, "Not really, I'd say I'm perhaps at 2 right now". I also said, "But what happens if I can't pass urine anymore, which could happen at any moment from now on, my pain level would go immediately up from a 2 to a 10". I guess that part went unnoticed.

What I should have said was "it's a frigging EMERGENCY - you gotta help me RIGHT NOW, I'm like in AGONY, man!"

But I did not. Guess I've learnt my lesson right there. It's an old issue of mine. I'm "far too nice". My first therapist, Julia Naish in London, explained it to me once during an evaluation session. In fact, it was the only session we ever had together.

Can you believe that after 7 years of intensive self-development work, I still can't tackle being "less nice". Funny where and when such things keep coming back to haunt you. But I digress...

* * * * *

We were told to wait outside, and that we would be called in very shortly.

Hours passed. Nobody called us.

Inevitably, the moment came when I had to go back to the bathroom and face the music. An impassable blood clot arrived and no matter how hard I pushed, that sucker would not come out. My bladder was filled up to the brink. There was that number 10 pain I warned the triage nurse about. I could barely walk back to the admission desk and was at a point where I thought I'd pass out.

According to the very nice receptionist, who was fending off calls as well as new patients, the trouble was that no bed was currently available. They were waiting for one to be vacated, and only then could I be seen.

It was another hour until this would happen, all the while my bladder was full and no matter how hard I tried, nothing was moving forward through my urethra. By now I could feel the cold sweat dripping from my forehand.

It's bad enough when you have to hold in your urine because there's no bathroom anywhere nearby. But if you're ready to go, and your body won't let you, that's a whole different ball game.

Finally the moment came when another nurse called us in. She immediately ordered what's known as a Bladder Cart to the Emergency Room. That's a mobile shelving unit, filled with urinary supplies such as catheters of all sizes and related paraphernalia.

The idea was to whack the largest catheter into me to relive the immediate full bladder, then suck out the blood clots with a positively massive syringe. Thankfully it all happened very quickly. A very friendly urologic nurse practitioner came in with the Bladder Cart.

I was still shivering with the cold sweats when she explained that she would now use a three-way 24 French catheter, and that it would probably be a little uncomfortable when she would insert it. I was adamant that "uncomfortable" would probably feel like a walk in the park compared to what I was already feeling at that moment.

Not knowing what would follow later that day, I would not make such a statement again.

The plan worked, or so it appeared at first. Immediate relief, followed by a rather nasty blood clot that was clogging up the catheter. But with a bit of patience it could eventually be moved. I felt hope again. All we had to do now was wait for a urologist to come and see us, so that we could discuss further treatment options.

* * * * *

We met a very nice doctor named Paleo, someone who would look after us down in ER as well as upstairs when I became an inpatient again a little later. Usually ER doctors are not always on call for inpatients, and I felt it made a welcome change considering the dire situation that was unfolding before me.

Dr. Paleo was calm and listened to my cancer story, and he felt very sorry for what had happened. But since he was not a urologist, he said he had no idea what was causing so much bleeding in my bladder. He said that all we could do now was wait for the urologist, however that man was held up in a surgery, which was taking longer than planned. Should I need anything, I should just holler.

Sadly that holler came sooner than anyone wanted to hear it, because those blood clots kept clogging up my super large 24 French three-way catheter. They simply didn't move, and my bladder kept filling up with no sign of relief.

Nurse after nurse came in to operate that huge horse tranquilizer syringe, and every time one of those massive suckers would come along, my bladder would spasm and give me vast amounts of pain in the process.

To remind me of such moments, I made sure to film myself while this was going on. I took a quick look at it two years ago, and I don't mind telling you that watching the footage is an extremely scary and painful experience for me.

Dr. Paleo had several kinds of painkillers in his pocket: Dilaudid, Percocet and even Morphine. I had a feeling that none of them would work against the type of pain I was experiencing with those spasms. I didn't even know what they were until much later.

There came the point at which I took all of those painkillers, one after another. But even with all these three strong ingredients combined, my pain would not subside. It's as if these meds had no effect on what I was feeling.

I had experienced screaming patients in ER before, when we were there last time in fact, when we were peacefully waiting for a surgeon to arrive. I felt extremely sorry for these people then, thinking "if they can't help you in ER, you're in real trouble".

All of a sudden I was the one screaming down the corridor, probably worrying (and annoying) pretty much everybody in the vicinity. I'm usually not the squeamish type, quite the opposite. I was as surprised by my own behaviour as everyone else was.

Julia kept telling me to calm down or I'd burst a blood vessel or get a heart attack. But the truth is, the pain of those bladder spasms was so terrible I couldn't help but scream - and then scream some more. I do not recall ever being in so much pain.

This rather unpleasant ordeal went on for hours. Nevertheless, the nurses kept coming in and were trying their best to suck out those blood clots. I used to call the successful ones "Clot Queens". Perhaps I should send them a certificate for "bravest ER nurse".

There were three or four of them during the course of our stay, and they took it in turns to try their luck on those clots. I had a feeling they might have been thinking, "I can't go in there again". I guess that's what I would have thought, had the tables been turned.

It didn't take long for Julia to become enlisted. She was volunteered to become part of Team Clot Queen, when one of the nurses looked at her and said, "YOU" in a rather authoritative tone of voice. "You're going to learn how to do this right now, this is happening far too often".

From then on, Julia would be an honorary hospital nurse, albeit unregistered.

* * * * *

We spent just over 24 hours in ER, a lot longer than the average patient. That surgery with the only urologist in the whole hospital was obviously taking a tad longer than anyone had expected.

When he finally did show up, he barely said a word to us and mainly told off the nurse on duty for not changing the urine collection bag adequately. Apparently that bag was part of the clogging problem, or so he said. He replaced it and flushed my bladder out with saline solution. Then he put me on something called Bladder Wash, and ordered me a bed upstairs as an inpatient.

The urologist appeared to be rather stressed out, and I couldn't help but feel that the last thing he wanted to do right now was to take care of my pathetic little bladder problem. I remember being very grateful for the fact that he finally came through the door, but I was slightly afraid to ask his name, which he did not volunteer. Now I can't even recall it. We only saw him once.

Bladder Wash is a procedure by which a large bag of saline solution is flowing continuously into your bladder and cleans it out. Eventually this should break up larger blood clots into smaller pieces so that they can be passed out through a catheter. The idea behind this procedure is to eventually stop the bleeding altogether.

The plan worked, even though the occasional blood clot would interrupt the flow, at which point the pain kept coming back. I guess you get the painful picture by now so I won't repeat myself here. Needless to say, the nurses upstairs on the third floor of the hospital were just as helpful keeping me company and alleviating my pain (and the blood clots) as the ones downstairs.

* * * * *

We finally met a "real" urologist a day or so later: Dr. Daniel Martinez. He was a verbose talkative guy with a larger than life personality. He could crack a joke, and I instantly took a liking to him.

Dr. Martinez verified that I should stay on the Bladder Wash procedure until Monday morning, at which point we may have no more blood clots to deal with. If that was not the case, he would take me into surgery and do a cystoscopy under full anaesthesia to take a look inside my bladder.

He also apologised that nobody had given me the right medication to keep my pain under control. He explained that what I was suffering from were in fact bladder spasms. Those are severe muscle contractions of the bladder, comparable to a mixture between a cramp and a tic.

Turns out there's a good medication called Ditropan for it, also known as Oxybutinin. This stuff keeps such nastiness under control and lets the bladder relax. As soon as he prescribed the little blue rhombus shaped pill, my hospital stay became a lot saner and more relaxed, perhaps even pleasurable. Or let's just say as pleasurable as the circumstances would allow.

The thing with bladder spasms is that not even doctors can comprehend how painful they really are. Shortly after my terrible experience, Julia found an article by a urologist from Georgia, who goes by the name of Dr. John McHugh. In his capacity he has been removing prostates for/from several patients and has heard stories about bladder spasms many times.

Dr. McHugh had no idea just how excruciating they could be until he experienced bladder spasms himself, after his own prostate removal. He talks about this on his blog prostatediaries.com, as well as in his book The Decision. The article is called "My Bladder Spasm Experience" and it's definitely worth a read, especially for those in the medical profession.

* * * * *

We could tell the doctors in the hospital were worried. Not only had I just been here a couple of weeks ago, and I had been discharged "healthy"; I was back with a condition they had overlooked. They wanted to make sure they wouldn't miss anything else, so several blood clot related tests were ordered.

One of them was a cystogram. That's essentially a series of x-ray images of your bladder, for which the latter is filled with contrast solution until you scream. Or let me rephrase that... until I scream. As I said, I had a serious bladder condition at that point.

One such day came and I had to be picked up and wheeled into another room downstairs. I was trying to be nice and played along. Several gentleman were eager for me to begin the test, for which my bladder wash procedure had to be stopped.

This aggravated the blood clots somehow, and it got to a point at which I needed a friendly volunteer to suck one of those suckers out of my bladder again. I was in agony, so somebody had to show up pretty sharpishly.

The only specialist nurse on duty who could take care of it, a very nice calm Chinese lady, was not available right away. My body didn't care, neither did the blood clot. I felt just like I had in the Emergency Room only two days earlier. The only person who was with me at the time, who had experience in how to handle this situation, was my lovely wife Julia.

The technicians called her in, not really sure what else they could do with me, and with the specialist Chinese nurse potentially half an hour away, we made an executive decision.

Julia dropped her possessions and rolled up her sleeves. "Right, I need a 50 cc syringe", she told the technicians. There was confusion on their faces. But like most people do in times of an emergency, they look up to a leader and follow her when she speaks.

"I'm sorry, Ma'am, I don't think we have those types of syringes down here", one of the men said. "Do you have a 10 ml pre-filled saline syringe then? Get me one of those. Now!" was Julia's answer. They scrambled nervously in a drawer and gave Julia what she requested.

We had seen how the Clot Queens had dealt with nasty blood clots in ER, Julia had been taught how to do it, and since nobody else volunteered to put me out of my misery, she took charge. She unwrapped the small syringe, attached it to my catheter, clamped the other end, and started dislodging the clot that was stuck.

"Do you know what you are doing? Should you be doing that?" - "She knows what she's doing", I said in agony, determined not to let anyone interfere with the procedure. It wasn't pleasant. It went on for several minutes.

"It's a little irregular, but if it helps..."

There was a general consent in the room among all us professionals that this was the best way to deal with this emergency. Eventually, the clot came out and my pain died a slow death.

Next thing we knew the specialist Chinese nurse came running in, ready to take care of the situation. We no longer needed her. My wife had already taken care of things.

It was a touching scene, and it goes to show that sometimes you just have to make these executive decisions in the most awkward moments. The pain wasn't anything I could have endured. Those bladder spasms were killing me.

Of course it was irregular, of course this isn't something that happens every day. But it delivered a solution that worked for everyone involved.

This is how A-Players think. This is what they do. You don't wait around for someone and hope they know what to do. You assess the situation, and you get it done yourself - no matter if everybody else approves of it.

* * * * *

Over the following days, Julia kept doing other odd jobs that would usually have been done by inpatient nurses. She mainly changed and switched over the large saline bags that were washing out my bladder. It had to be done on time, otherwise blood clots could have coagulated, which was something we wanted to avoid at all costs.

The nurses were very approving of our team effort, because it meant a little less pressure on them.

* * * * *

On Sunday, Dr. Martinez was not on call himself, but he promised that one of his esteemed colleagues would pop in and look after me, Dr. Yekutiel Sandman. Based on his decision we'd go ahead with that potential cystoscopy the next day, or alternatively be released.

Dr. Sandman came in to see me promptly at 9am, took a huge syringe from the cupboard (urologists seem to really like those very large syringes). He filled it with saline solution, disconnected me from the bladder wash setup and filled my bladder with about 100ml of cold liquid in less than 2 seconds.

I don't mind telling you, even with a perfectly healthy bladder, that's an awkward experience! Just as awkward as sucking the solution out again with the same syringe. It's not something that neither your bladder nor your mind is designed to cope with easily. It's more than a little traumatic.

When Dr. Sandman repeated the procedure, with me desperately holding on to a piece of my thin white bed sheets while simultaneously biting my lower lip every time he did it, he told me that I wasn't draining quite right. He would recommend to go ahead with the cystoscopy and volunteered to let Dr. Martinez know. After all, it was still not clear where all those blood clots were coming from.

Fun Fact: Blood in your urine, clotted or otherwise, is called "gross hematuria" (gross being the very descriptive and operative word here). Gross hematuria is usually visible, unlike what's known as "occult blood". The latter is a trace of blood in your urine, detectable only under a microscope.

* * * * *

Monday morning came, and at 5am sharp I was wheeled downstairs to the OR in preparation for a bright and early procedure. OR is short for operating room, where the “real” surgical magic happens. Lucky for me I'd be completely sedated while whatever needed to be done would be performed.

In preparation for any OR procedure, patients are advised that they need to take a shower with some special antibacterial soap the night before, so in addition to the fun of having an early surgery with a 5am pickup, a nurse came in at about 2am to remind me that NOW would be a good time for said shower. They keep an interesting timetable at the hospital. Needless to say I skipped breakfast that day.

By now I was used to how the anaesthesia worked, and I was no longer amused by its effects. When I came to again at around lunchtime, the nurse explained that Dr. Martinez had found a golf ball sized dripping blood clot inside my bladder.

Not only was there a giant blood clot, she continued, but there was also a huge tumour on the inside of the bladder wall, which had previously gone undetected. The tumour was bleeding, and although most of the blood coagulated into that massive golf ball sized thing, it was occasionally shedding bits off. This shedding was materialising as anything from medium to large bits and pieces. Finally we knew the reasons for my discomfort.

That tumour in the bladder wall was still classed as colon cancer. A pathologist verified this. The cancer had made its way there due to the close proximity to my original colon tumour.

Although technically my cancer had spread from its primary initial site to another, this was not technically classed as metastasis. The latter is a process in which the cancer is so far advanced that it sheds cells into the blood stream, from where it can travel literally anywhere in the body. When such cancer cells settle down and grow somewhere else, the resulting secondary tumour is called a metastasis.

On one hand that was great news, because we did catch my cancer before its last and super nasty stage, before it could settle in other parts of my body unexpectedly. At the same time, it didn't really matter: when cancer spreads and grows out of control, semantics still won't cure you.

* * * * *

Dr. Martinez had removed all those nasty remains of both the massive blood clot and the diseased tissue as best as he could. As a result, the clots stopped coming.

At least for a while they did.

I was kept under observation in hospital for a couple more days, but we stopped the bladder wash to give the surgical wound inside my bladder a chance to heal. All I had to go home with was a huge three-way catheter and I was advised to drink plenty of liquids.

Living With A Catheter

Upon my discharge, I had a nice supply of Ditropan at my disposal, together with a good and steady stash of urine collection bags and other paraphernalia. The latter was arranged by McKesson, the same medical supply company that was responsible for delivering my ostomy related stuff.

Now I had two bags hanging out of me at all times: my colostomy, and in addition, a super annoying catheter that would accompany my life for at least the next four weeks. Dr. Martinez explained that this was put in place so that my bladder tissue could heal without it expanding.

I don't mind telling you, living with a catheter can range anywhere between annoying and downright terrible. I felt like my life had gone from bad to worse in only a matter of weeks.

The bladder spasms continued at home, especially during the first week or two of living with a catheter. Even the Ditropan couldn't always keep the pain under control. I remember this to be an extremely stressful time. Even though I was grateful that the blood clot scenario seemed more or less under control, the odd piece of debris would occasionally come out and clog the catheter.

This was something I hadn't experienced while in hospital: at times, my catheter suddenly stopped running.

That's seriously dramatic, mentally as well as physically, because the only exit pathway out of the bladder is blocked by Mr. Giant Catheter. What happens if it can't be dislodged? Would my bladder rip apart? A logical thought, given that it had just been cauterised beyond recognition.

We were told this may happen just before being discharged, but it didn't sound like a big deal when the nurse was talking about it at the hospital.

In the highly unlikely event that this eventuality should occur (which of course it did in a matter of days), we were given the same setup used by the doctors in the hospital: a professional irrigation kit. This kit consists of a small plastic box, containing a bottle of saline solution, a large 50ml syringe, an empty bottle and various other bits.

We had seen Dr. Sandman use this setup the day before my cystoscopy procedure, and I don't mind telling you I still cringe at the thought of this ever happening again.

Here's how it works: you fill that giant syringe with sterile saline solution, clamp the catheter, then remove the urine collection bag from the catheter inlet. Now you take off the urine collection bag and instead connect the giant syringe. Now, while the patient gently bites onto a piece of wood, you empty a good portion of the saline solution into the patient's bladder.

This procedure should dislodge whatever is blocking the catheter and restore adequate urine flow. Catheter blockage can be caused by a piece of debris or a blood clot, or potentially the bladder wall itself when it accidentally gets stuck to the catheter opening on the inside of your bladder.

I cannot adequately describe the psychological turmoil this meant for both Julia and me. Of course my catheter loved clogging up, usually at the oddest times or in the middle of the night, and those clogging sessions were naturally accompanied by a friendly bladder spasm.

Sometimes walking around would make the catheter start flowing again. I had read that coughing might also work to Dialoge bits and restart the catheter. But most of the time, either Julia or I had to get that irrigation kit out and follow the above mentioned procedure.

Just like the rest of this nightmarish journey, it was a team effort between the two of us. We both made sure the other one would stay calm when a clogging session had to be rectified, and we encouraged each other to do things we never would have done otherwise (for example, squeezing saline solution into somebody else's bladder).

Neither of us caught much sleep during this period, and I couldn't wait for the catheter to be removed again. But, given the circumstances, we both felt positive and thought that although this little hiccup of a secondary tumour would postpone the chemotherapy, this whole nightmare would soon be over.

* * * * *

I've had the dubious pleasure to have used pretty much every type of male urinary catheter known to man.

The types I mentioned above are known as an indwelling catheters, also known as Foley catheters. They're inserted through the urethra all the way into the bladder, and at the top there's an inflatable bubble to hold it in place. Once inserted, somewhere between 10ml and 30ml of saline solution is pumped in to make the bubble expand, which means it can't accidentally slip out and doesn't need to be held in place with anything on the outside.

Should you ever be in a situation where you have to do that, make sure that bubble never inflates while it's still inside a patient's urethra. It's very painful for the patient. I speak from experience!

Foley catheters come in two variations, with a straight and what's known as a cue-de-tip. The first is straight, while the latter is slightly bent and a bit thinner at the tip and used for patients with an enlarged prostate. I'll tell you more about the implications of those differences in a later chapter.

Various sizes of catheters are available, ranging from a relatively harmless 12 French to the mammoth 28 French size. The largest one I ever had was a 24 F.

I'm not exactly sure why, but "French" or simply F in this context denotes the diameter of catheters. One F is the equivalent of 0.33mm, so my huge 24 F catheter is about 8mm in diameter.

Standard Foley catheters have two inlets, one for urine, and another to administer the saline solution for the inflatable balloon. But there are also triple lumen catheters, which have an additional inlet. This can be used for a bladder wash procedure that I had: one lets liquid in, the other one lets liquid out, and the third one inflates the balloon.

In addition to the above, I've also had a suprapubic catheter at one point. It's the same type of catheter, but the administration is different. Rather than it being inserted through the urethra, a suprapubic catheter is kind of embedded into your tissue and leaves your body just above the pubic bone.

Then of course there's also the external condom style catheter, but I'll tell you more about these two when the time comes a little later in this book.

I guess what I'm saying is I've had them all, and I've had them for longer than is "fun". Because of all that experience, I can honestly say that all catheters have their pros and cons, but there's one thing that all these types and styles have in common:

They suck. Period.

I could probably end this chapter right here, because that's all I really want to say about urinary catheters. That they suck. Dramatically. One part of me can safely say that catheters inside your bladder are by far the worst thing that can ever happen to anybody.

But another part of me cherishes what urinary catheters can do, and how helpful they can be at the same time. I'll let you in on what it's like to live with a catheter for months, even years.

* * * * *

The first time I had heard of the concept of a urinary catheter was when I was relatively little. My great grandmother had been bedridden for over a decade, and although she could still walk when I was born, my earliest recollection of her was that she was living a life lying in a hospital bed in her own living room. Because she couldn't walk around, or get out of bed, she was wearing a catheter.

I also remember her decade-long catchphrase, "I wish it was over". Perhaps the catheter she was wearing had something to do with this statement.

The only thing that gave the catheter away was a rather hefty urinary collection bag dangling from her bed. I was too young to drink coffee then, so I joined my family with some juice... apple juice to be exact, and sitting in plain view of that collection bag with a glass of juice spoiled my appetite a little bit.

Catheters (urinary or otherwise) aren't a good conversation starter at the coffee table, so other than the fact that she was wearing one, we never broached the subject. Eventually I managed to find out what it did, and that was enough explanation for me.

* * * * *

Many years later, my freelance colleague Simon from MTV told me that he had recently had an appointment with his urologist. The man recommended that Simon should have a cystoscopy. I had never heard of that before.

When he told me about the procedure, Simon had just had it a week or so earlier, and he was kind enough to explain the details to me. He picked up a regular BIC ballpoint pen, inclusive of its usually missing black cap at the top. "They whack a tube this fat up your knob", he said, pointing at the pen, "and then they push it all the way into your bladder".

I thought about it for a moment, inevitably pitying both Simon's and my own urethra, and replied that a device of that size can't possibly fit into a urethra.

"They make it fit", he said and explained the rest of the procedure. "The bloke switched on a monitor, cystoscope in one hand, and he asked me what I did for a living. I said I work in television!"

For decades I hadn't thought about any urology related stuff, including catheters. I didn't even know a procedure like a cystoscopy existed, until that very moment with Simon at MTV, in the gallery of the long since demolished Studio B.

* * * * *

A few months before I had my first surgery, I met up with my friend Sven from Berlin. He's a professional trombone player, who had transcribed music for a living, when he was working for a multi-platinum winning Hollywood composer back in LA.

We spoke about his own colon procedure, and what I could expect from a visit in hospital. This included both a colostomy and a catheter. "You wake up with a catheter, so you won't have to worry about them putting it in when you're awake", he said. "And afterwards you'll never have to worry about it either, because the nurses will take care of emptying it for you".

And that's exactly what it was like while I was in hospital. At least I had a bit of warning about that part of the process.

What I didn't have advance preparation about was what it would be like to live with a catheter while I'm not lying in a hospital bed anymore. You see, there's the catheter, which is like a piece of rubber hose stuck in to your private parts. But there's also the whole organisational side that comes with urine collection bags.

Inevitably, when you want to walk around, a urine collection bag has to walk around with you. To make this as convenient as possible, several companies have invented small bags that attach to one of your legs with velcro straps.

Usually an extension hose then goes into the catheter, connecting your bladder output with an external collection reservoir. Sounds terrific on paper, doesn't it? You can either attach the leg bag to the top part of your leg (which due to anatomical reasons doesn't stay very well in place), or you can choose to wear the bag further down on your leg. This is more convenient, because the velcro strap above your calf muscles will stay in place.

Unless you're wearing long trousers, you'll present your urine collection as a public fashion statement. Being more of a "shorts and flip-flops" kind of guy, I mostly chose to do that.

I remember when I went out with my shiny new urine collection bag for the first time. Julia and I wanted to grab a drink at our local Starbuck's, which was only two blocks away and would present a nice exercise opportunity.

The second we walked out onto the street, a dude who was waiting for the bus in front of our house made a comment, more out of genuine interest than anything else. I explained that I just had surgery, and he said, "Aw, that's terrible - hope you feel better soon. God bless you!" That was nice of him.

Another experience I had was with a woman in the park who was walking her dog. She thought that my urine collection bag was actually a muscle cooling device for my leg. I explained that it was urine rather than coolant in the bag, and that I'm wearing it as a result of having colon cancer. To my surprise, she told us that she was suffering from ulcerative colitis, but that she had it under control with medication. Living with a catheter is a better conversation starter than I had realised.

* * * * *

The fact that a collection bag is attached to the catheter, which in turn is connected to a rather fragile part of our anatomy, means that whenever you walk around with it, you'll feel it. You can't walk that fast with it either, otherwise that feeling turns from "slightly awkward" to "very uncomfortable" in a matter of seconds.

There's also an issue with soreness that can develop at the insertion point of the catheter. Thankfully Dr. Martinez had given me a big tube of Lidocaine paste that I should administer to the tip of my penis when needed. Lidocaine is a numbing agent, which is sometimes used when nurses insert a catheter into your urethra.

Another interesting component to the whole catheter and collection bag scenario is what's known as a StatLock, or Foley Stabilisation Device. This thing sticks to the inside of your leg and holds the catheter in place. Without it, the attached leg bag would constantly pull on the catheter, and that feels just as terrible as it sounds.

As a patient, you only have to take care of applying these things when you have to wear a catheter for several months. The glue on this device is so sticky that it easily lasts for several weeks without it needing a change.

The worst part is when nurses try to remove this thing from your leg. Due to its very powerful glue, the StatLock refuses to come off easily and likes putting up a fight. They print a message on it saying "remove with alcohol".

It's probably meant as an insider joke, because alcohol only does very little to remove the glue. Perhaps what they meant to say was to administer alcohol to the patient, because ripping this thing off the patient's skin is a tad excruciating.

Needless to say, using a simple adhesive remover wipe would immediately alleviate such suffering, and nobody needs to get hurt in the process.

* * * * *

Urine collection bags come in several sizes and are made by various manufacturers. The ones preferred in hospital are made by an American company called Bard, the same company that has a monopoly on manufacturing catheters.

Bard bags suck. They're made of material that's so strong it could be used for pressurised industrial garden hoses. I didn't know this initially, but found out later that those bags are so tough that they induced bladder spasms for me.

Bard also make portable leg bags, but even their "deluxe edition" isn't great. It works much better than the "non-deluxe edition", which does not come with velcro straps and uses flat rubber bands instead. While they stay on your legs when you wear them, rubber combined with plastic on a hot day just makes you sweat a lot.

The good news is that a Danish company called Coloplast make much better bags. If you ever get a choice, ask your doctor or supply company for Coloplast. Should they refuse, or your insurance won't cooperate, have a look on Amazon or eBay. You can also call Coloplast directly for some samples. They make nice looking ostomy supplies too, but I never had the pleasure to try them myself.

* * * * *

Much like our bladders, urine collection bags fill up with time, at which point you need to drain them. Usually there's a little flip-up valve at the bottom to empty the bag, making this process very easy and convenient. I recommend to dab the end with a piece of toilet paper afterwards.

Bags without such a contraption can create a complete mess in the bathroom. Those criminally cheap Bard "non-deluxe edition" leg bags for example. Such trouble can cost you the last bit of sanity and can easily be avoided by using better bags.

Emptying bags is very important: I remember a nurse telling me that she had a patient who fell asleep in his chair for several hours. He was using a small leg bag with a capacity of perhaps 500ml (about a pint), and when that thing is full, his bladder started expanding.

That was not the worst bit though. Once the bladder is full to the brink, and urine can't escape anymore, it backs up all the way to your kidneys, causing both flank pain as well as potential kidney damage. Just thinking about such a scenario makes me cringe!

To avoid such accidents, it is possible to switch to larger bags that can hold anything from 1.500ml and three litres (which is almost a gallon). They're definitely convenient for night time use.

That's one of the very few positive things I can say about catheters. Middle aged people like myself will appreciate this: with a large bag attached, you can sleep all night long - without having to get up for a bathroom visit.

When I experienced this for the first time, I couldn't believe the difference this could make to the amount of restful sleep one can get. I'm so used to getting up at night, it has become normality for me. But with a catheter and a large bag next to me, I could regularly sleep for many hours without waking up.

So to everyone reading this who is not regularly getting up at night, please take a moment to appreciate this fact and be grateful for what you have. Enjoy it while you can.

* * * * *

Changing bags from a small leg bag to a night bag, or vice versa, is relatively straightforward: the catheter is made of a latex or rubber-like material, and collection bags have a cone-shaped piece of plastic at the top. This slides into the catheter easily and usually does not pop out unless you pull it.

Just make sure to attach the leg bag to your leg first before making the switch. Always have a piece of toilet paper handy, just in case. Oh, and check that the flip-up valve at the bottom of the leg bag is closed before walking around. I'm saying this because I remember that slightly awkward trip to the hospital across town, and at first I thought I had stepped into something wet, when in reality I had urine dripping onto my foot.

It is slightly awkward to take a shower with a catheter. I chose to do this without a bag attached, thinking that I'd rather the latter be kept dry while I get wet. Aside from a dangling piece of rubber hanging out of my private parts, there is indeed the non-stop dripping issue. It's like having a live feed directly from the kidneys. Every time they produce a drop of urine, you can see it coming out only moments later.

That's really not problematic while you're getting wet under the shower, but can be awkward when you dry yourself off with a towel. Again, organisation is everything here: dry your head first, then point the catheter upwards so it stops dripping for a few moments. Now dry your preferred leg, attach the bag and insert the catheter. Then proceed to drying the rest of your body.

Sounds very simple and logical; but in reality, it was exactly those simple things we all do on auto-pilot that, when interrupted, threw me off kilter the most.

Genetic Testing

Before my first chemotherapy would begin, we had an appointment with the Genetic Testing Bureau, conveniently located inside the Baptist South Miami campus. That's a different hospital than the main Baptist Hospital in which we practically lived for what felt like the last two months, albeit only a mile or two up the road.

We were sent there because people of my age usually aren't candidates for cancer. I was 43 at the time, which is rather young for a cancer patient. Older people can get the disease as a result of cell division tiredness.

When DNA replicates, mistakes can sometimes creep in, which can lead to abnormal cell growth. As I understand it, this process can happen to anybody and in any body part. It's a common occurrence as we get older. Hence, the average age of a cancer patient is well over 60.

In younger people, the cells should be alert and attentive enough for such mistakes to be detected. The DNA should be adequately checked and repaired before it is reproduced. Unless of course there is a genetic defect involved, and the Genetics Test would help determine if that was in fact the case.

* * * * *

We met another lovely lady named Jessica Ordonez at Baptist South Miami, who explained the very harmless procedure to us. This time, all I had to do was fill a small tube with roughly one tablespoon of saliva, which would then be sent off to a faraway lab somewhere in the US.

The exact location of said secretive genetics testing agency escapes me now, but thankfully it's not very important to the rest of our story.

Jessica also took extensive notes on any cancer in my family. It felt almost like drawing up a huge family tree of who was related to whom, and who at which points in their lives had cancer if any, and what type of cancer they all had.

I already knew that there was quite a bit of cancer on both sides of my family, but it had never occurred to me that the reason for this may lie in our genetic makeup. I was relatively young when these cancer episodes happened and therefore only knew sketchy details.

I could give Jessica enough information for the bureau to deduce that on my father's side of the family, our DNA may have a condition with the colourful name of Hereditary Nonpolyposis Colorectal Cancer, also known as Lynch Syndrome.

This is a genetic defect that can interrupt the process of making sure that my DNA is replicated properly. If accurate replication cannot be guaranteed, there's a small chance that a cancer cell is accidentally produced.

As I understand it, the process works like this:

When a cell divides, it starts by replicating the super long strand of DNA, the blueprint from which our whole body can be built. Obviously an exact replica needs to be 100% intact in order to produce the exact replica cells we need.

Accurate DNA is extremely important, which is why a "spell checking" mechanism is applied before a new cell is built around the replicated DNA. If there are any mistakes in the replication process, the new cell is not created (otherwise we'd all turn into monsters, or at least our body could grow monstrous tumours of some kind, should such a defective cell survive).

Lynch Syndrome means that this spell checking mechanism is impaired in some way. Therefore, it cannot be guaranteed that the replicated DNA is always 100% accurate. There is currently no cure for this condition, and depending on the extent of the syndrome, people who have it may contract cancer at any age in their lives.

What genetic testing can help with, is to determine what type of cancer such patients are likely to get, and what they're relatively safe from.

For example, in my case, the test revealed that colon cancer is what I will develop as a result of this condition. At the same time, there's no danger of an outbreak of breast cancer, testicular cancer or prostate cancer for me - at least not as a result of a genetic defect.

That's not to say that I won't get any of those types of cancer as part of getting old in my dotage later. But it means that colon cancer could have hit me much earlier, and that it could hit me again at any time. Had I started going to regular colonoscopies much earlier in my life, this whole mess I was in at the time might have been avoided.

* * * * *

We left the clinic and had lunch at a nearby Panera Bread, cashing in a free reward for a pastry and a coffee, all in a day's work. Appointments such as these would be our full time job going forward.

A few weeks later we got the full report back, which confirmed that Jessica's suspicion was correct, and that I had indeed Lynch Syndrome. It was shown to have come from my father's side of the family. I was advised to relay this fact to the whole branch of my family and tell them that they are all disposed to having colon cancer, but are genetically safe from other types.

Dear Versluis Family from Bremen in Germany, as well as Woerden in The Netherlands: in case you're reading this, please spread the news! I know we haven't seen each other for decades, but this is important. Please schedule your next colonoscopy, no matter how old you are. And don't worry too much about that mammogram until you're 50.

Thank you! And hello by the way.

* * * * *

Genetic Testing revealed another interesting aspect about my particular type of cancer: I am K-RAS positive and MSH high. This means that I don't have "regular" colon cancer, but a rare mutation that is much more aggressive and invasive than the "regular" flavour.

I don't want to overload you with technical details here, so I'll make it brief: in a nutshell, K-RAS is a gene that tells a cell if it should replicate or not. There is a limit as to how many cells a particular part of our body needs, and there comes the point where an ideal number of cells is reached. At that point, cells are told to die quietly without the need to reproduce. If this gene is impaired, cells are allowed to multiply indefinitely, even if they are not needed.

If you have the K-RAS mutation, not only do you get to enjoy the uncontrolled cell growth of regular cancer, but those cancer cells also multiply much faster. As a result, your cancer grows quicker and invades healthy tissue much more aggressively than without it. It appears to be working overtime, burning the midnight oil.

* * * * *

What a depressing discovery was that? I had a genetic disposition to cancer, and on top of that I also had that aggressive invasive mutation thing going. None of us choose the cards we're dealt, but I guess when it rains it really pours. Thanks, Murphy - you made your point.

Julia and I didn't know the exact implications of what these findings were, or if they had an impact on the planned cancer treatment. As it turns out, and as I'll tell you a little later, these two conditions would both be a horrific nightmare, as well as a blessing in disguise.

FOLFOX

Finally, sometime in May 2016, my first chemo treatment was about to begin. I couldn't wait for us to tackle the disease that was turning our lives upside down. This treatment was going to cure me quickly and efficiently, and me being German and all, I really like efficiency.

Although the preceding test did not specifically check this, efficiency is in my genes.

The plan was that after a yet to be determined amount of infusions with a cocktail known as FOLFOX, I should be cured. I believe 6 cocktails were the initial amount, with a further option for another 6.

It's like being cast for a soap opera: you're in the first season, and we'll option you for the next season (although we don't know if it'll ever be greenlit).

Getting one chemo cocktail is called a "cycle". Such a cycle describes one infusion every two weeks, with regular blood tests to monitor my condition. There would also be the odd CT scan to check how much my tumour was shrinking.

Depending on how quickly the treatment was working, any residual cancer would then be taken out with another surgery procedure. When we were sure that I was cancer free, my current colostomy would be reversed at the end of the whole ordeal. The whole she-bang was going to be over within 6 months tops.

It sounded like a good plan on paper.

* * * * *

We had already met the oncologist who was going to look after us at Baptist Hospital, or more specifically, the Medical Arts Building. Back in 2016, the whole cancer operation at Baptist was confined to two hopelessly outgrown floors inside a single building. That was before the launch of the Miami Cancer Institute in 2017, a shiny new building complete with proton radiation machine on the same campus in Kendall.

My first oncologist was one of the saddest looking people I have ever seen. He was quite clearly affected by the hardship of cancer and apparently lost all hope that any of his new patients would ever be cured. At least that was my first impression of him. Giving him the benefit of the doubt, we thought perhaps he was just overworked and didn't take this as such a bad sign.

Perhaps it was for that reason that in preparation for the first infusion, we spoke to his nurse practitioner on the 5th floor of the Medical Arts Building, Janet Torres. She was a much happier person and gave us a few pointers as to what we could expect from chemotherapy.

The list included the side effects we've all been dreaming about: nausea, hair loss, loss of appetite, weight changes, diarrhoea, vomiting, mood swings, the whole nine yards. But also very odd things like sensitivity to cold things when eaten or touched, specifically in your fingers and toes. Most of those weirder side effects were only supposed to be temporary, but the latter might remain for a "longer period of time".

When I asked Janet if that finger tingling thing would ever go away again, she just smiled at me and didn't answer. That's a doctor's way of saying "well it might - if you're lucky, but then again it might not, which is the more likely scenario".

Message received. Potentially screwed for life. Let's move on.

The chemo cocktail that was chosen for me was called FOLFOX. That's not the name of the actual medication, but rather the name of a whole host of poison that's been in use for several decades. The way chemotherapy works in principle is that it very nearly kills humans, and in the process, it may make the cancer's life a little more difficult.

Chemotherapy doesn't really kill cells. Rather, it prevents many of them from replicating. This is why on the day of the infusion, there are little to no side effects. But a day or so later, the cells that should have renewed by then did not do so, making you feel like a sip of water in a curve (that's a German expression... now that I've translated it, I can see it doesn't make much sense).

The FOLFOX regimen consists of some steroids, anti-barf meds, a platinum-based medication called Oxaliplatin, and some equally terrible stuff named Fluorouracil, or 5-FU for short.

The latter two components are the actual poisonous medications. If you're really lucky, they can kill or severely sedate colon cancer over the course of the treatment.

The first three are administered over a period of about 3 hours in an infusion suite, while the futuristic sounding 5-FU is administered over 46 hours following the first infusion. This happens really slowly, at a rate of something like one drop per minute. I have heard stories that years ago, this 46 hour long infusion would have happened at the hospital. But nowadays, you get to take home a portable pump for this procedure.

I had to wear this thing for two days straight, no matter what I did, day and night. It fit snugly into a black nylon bag with a convenient shoulder strap, and unless the intravenous line got trapped or stuck behind something, it was only mildly annoying to wear.

On a more positive note, the pump ran on two AA batteries that were only 20% discharged by the end of the infusion. When the line was removed two days later, I always got to keep the batteries. I've collected quite a few of them, and they'll power most of our remote controls well into the next decade.

* * * * *

Besides the above FOLFOX regimen, an additional drug called Avastin is often given to colon cancer patients. This rather piratey sounding solution prevents your body from creating new blood vessels so that tissue growth is minimised. In my case however it was decided that it might actually do more harm rather than be helpful, due to the fact that I still had that bladder bleeding issue.

* * * * *

When the day of the first infusion came, Julia and I made our way to the 2nd floor of the Medical Arts Building and waited patiently in the hopelessly overcrowded waiting area, together with what felt like 50 other patients. We were all suffering from various forms of cancer and were at various stages of treatment.

Many patients looked relatively healthy, which I thought was a good sign, however most patients were considerably older than Julia and I. It made me feel like I didn't quite belong.

As soon as our turn came, a friendly Latina nurse saw us into the equally overcrowded and hopelessly outgrown infusion suite. The chairs for the patients looked and felt like old airline seats that had been in use for the better part of many decades. Perhaps that's why, at least to me, an infusion felt a bit like a long distance flight, except for the fact that you're hooked up to some pump that would inject ultimately bad stuff into your veins.

We were advised to prepare ourselves accordingly, with either a tablet device, a laptop or a good book. Free WiFi, drinks and snacks were included in each session (for those who could actually eat or drink that is).

As a precaution, and because of the potential sensitivity to cold temperatures, drinks such as ginger ale were served at room temperature though. Hot blankets were also on offer. Serving these things was usually taken care of by a fleet of very friendly volunteers on the floor. I guess you could say they were the equivalent of airline stewardesses.

In fact, friendliness and kindness is what I most remember about this time. The space was so small that inevitably patients and nursing staff were pretty much on top of each other, and there was always somebody to chat to, share experiences with and explain things when you wanted to talk.

* * * * *

My first chemo cocktail wasn't actually that bad, quite the opposite in fact: first of all it made me pee a lot, and with it, my bladder seemed to have a good time. It was not producing as many blood clots as it had done before. Which was nice.

I didn't experience any of the nasty side effects that we had heard so much about either. Quite the opposite was happening: my appetite increased rather than decreased, and I thought this might actually be very helpful because I wanted to keep my strength up. I had heard horror stories of people not healing due to low appetite and low food intake. Perhaps this stuff was working rather well for me after all?

I found out much later that the chemo takes a few days to kick in, and that the more immediate effects of "enhanced wellbeing" are probably caused by the steroids.

The real killer is the 5-FU. It makes you gradually feel worse over the course of the next several days. So by the time disconnection day came, two days after the the infusion had started, that's when I usually felt my worst.

The effects of chemotherapy are accumulative. The first cocktail doesn't seem to do much, neither does the second one. But by the end of the third, fourth and fifth infusion, the longer lasting side effects creep in. Anything in excess of six cycles can be downright nasty.

We kept up those bi-weekly infusion appointments over the course of two months, between May and July 2016. We didn't have a car, which meant this ordeal was a journey in excess of two hours on Miami Dade's public transport system, some 20 miles (32km) from our home in Miami Beach.

We had to do this three times every other week:

On Tuesdays we had to go in for what they called a "finger stick". This suggests something as harmless as a routine sugar test: a small hardly noticeable puncture in one of your fingers from which a single drop of blood is drawn.

In reality however it is a harmless small puncture, followed by a rowdy nurse squeezing your poor finger so hard that the bone might accidentally peek through. Lucky for me the nurse remembered which finger she had used the last time (probably by the bruises) and chose a different one next time.

On Wednesdays we went in for the actual treatment, if and when approved based on Tuesday's blood work. This consisted of hanging out at the infusion suite and being given the FOLFOX cocktail, usually followed by lunch in the Baptist canteen or one of the smaller cafes in the Medical Arts Center. And after that, the two hour journey back home.

And on Fridays the same week, we were there just to have my 5-FU pump disconnected and for my port to be flushed with saline solution and heparin lock (the latter prevents blood from clotting, so that my port was usable next time).

Looking after chemotherapy treatment felt like a full time job. The travel time alone was about 12 to 18 hours every other week. That's less of a pleasure than it sounds, given how subsequent chemotherapy treatments made me feel.

* * * * *

Thankfully we had free public transportation as part of a scheme called STS, the Special Transportation Service provided by Miami Dade County. It's a system that lets you register for disability and includes either cheap shared car rides as well as free bus and train usage.

Ah yes. Being a cancer patient, living with a colostomy, as well as a catheter, I was now officially classed as disabled. Let me tell you, it's very different to be told that you're disabled, rather than choosing to register for disability.

I remember when my colleague Andy found out that he had a rare medical condition, undetectable by anyone other than a microscope. Rather than be afraid of the condition, he was thrilled instead. Andy couldn't wait to register for disability voluntarily, because it would give him access to the best parking spots at the supermarket.

Disability has its merits, but this classification also drives home that you're no longer what you once were. Be that as it may, we can all take a page out of Andy's book and feel good about the fact that such a classification exists. Don't let it get you down! Rejoice and enjoy the benefits that come with it. In Andy's case, convenient parking spaces. In my case, free lifetime public transportation.

Although those STS car rides were relatively cheap (around $5 per trip, no matter how far), in reality this scheme is not something you can use as an ill person.

Not only would the drivers arrive with terrible unpredictability, sometimes an hour or two late; they would also fill standard passenger cars with up to 4 people, three sitting in the cramped back. When you're travelling with several fragile plastic bags with waste material attached to your body, while feeling like crap from chemotherapy infusions, it's just not something you can enjoy.

I don't want to sound ungrateful or anything, but since the system is designed to carry disabled or unwell passengers, the phrase "back to the drawing board" springs to mind.

* * * * *

Although I had felt good about the treatment at first, despite its hefty side effects, my wellbeing changed for the worst over the course of the infusions.

By the end of the 8th treatment with FOLFOX, the blood clots in my urine had increased again. They had never really stopped, but they hadn't significantly grown in size either. As long as I kept my liquid intake to about 100 oz (roughly one gallon, or just under 4 litres), my bladder seemed reasonably happy.

Sadly there came the point at which I thought perhaps Dr. Martinez should be notified. One day I found something that looked like uncoagulated blood in my urine. It looked more like a knitted piece of carpet rather than clots this time.

Upon hearing this, Dr. Martinez suggested yet another cystoscopy, and rather urgently too. He duly booked us in for the procedure the next day at Baptist to take a closer look at the inside of my bladder once again.

This was the first time we were attending the surgery department as an outpatient rather than an emergency case. Up until that point, I didn't even know the surgery department had a back entrance for cars other than ambulances. What a welcome change indeed!

* * * * *

The cystoscopy revealed a shocking surprise: the tumour that Dr. Martinez had previously resected and carefully removed from the inside of my bladder had regrown. In fact, over the course of the previous two months, it had grown into a bit of a monster.

If I remember correctly, he said that what he removed was both a gigantic blood clot and part of the regrown tumour. All of which combined was the size of a tennis ball!

This equates to a volume of about 8 cubic inches or roughly 130ml. And that's before we account for any space left for urine in my bladder. No wonder I was feeling as bad as I did.

Statistics aside, the consequences of this discovery were grim. Much grimmer in fact than just the thought of having a tennis ball sized blood clot in my bladder. It meant that in effect, the FOLFOX chemotherapy treatment wasn't working. The infusions had done nothing to slow down the growth of my tumour, let alone shrink or kill it!

* * * * *

When we spoke to Dr. Martinez a week later in his office, the preliminary results from the pathologist suggested something even worse than that. Dr. Martinez told us that we might even be dealing with a second primary cancer.

His theory was that instead of this being an invasion of my colon cancer into my bladder, considering that I had Lynch Syndrome, I might now have developed fully fledged bladder cancer in addition to the ongoing nightmare.

Based on those findings, combined with the fact that my cancer was seemingly unstoppable with traditional treatment, Dr. Martinez recommended the safest course of action: to remove my whole bladder before either cancer could spread any further.

Medical professionals call this a "radical cystectomy". The procedure is tough and difficult, and may leave patients without a reservoir to store urine internally.

This would either mean that a neo-bladder would have to be formed from other tissue, or patients are left with a permanent diversion. The latter is called a urostomy, formed from a piece of small intestine to which the ureters are sutured. It would mean said urostomy would forever leak urine into a permanently attached plastic bag on the patient's belly.

* * * * *

When you get news like that as a patient, a whole host of emotions start coming over you all at once. I can only imagine how tough it must be for doctors to give such news to their patients, and I was on very good terms with Dr. Martinez.

I was so shocked I started crying. My very own worst nightmare had finally been suggested by a medical professional. I had often thought about how long doctors would tolerate whatever my bladder was doing until a more drastic measure would be suggested.

Finally, here it was. Cut that bladder out and chuck it in the trash, on the scrapheap, in the proverbial incinerator. Have them do a permanent hatchet job to tell your kids about.

Did I say kids? Say good-bye to that idea! You won't be around to see them grow up, let alone create them. Instead, you can use plastic piss bags in addition to the plastic shit bags and stink up the joint, for as long as you'll be on the planet.

Dr. Martinez did his best to calm us both down, and explained that a cystectomy would be the best and safest way for my survival. We had to stop the cancer, and mine was apparently so bad that it could not be stopped any other way.

If I wanted to live, I would have to pay with my bladder. And my prostate. And my seminal vesicles. That was the only currency accepted.

* * * * *

Shocked, speechless and in tears, we left his office. On our way out, one of the nurses that had shown us in embraced us, close to tears herself. I had always been the happy cheerful patient. Now I had turned into an emotional wreck.

My cancer had a lot to answer for. Its ingenuity and evilness had grossly been underestimated, both by our doctors and by myself.

It was becoming clear that this was not the casual six-month affair we had been told it was going to be. My life had been turned upside-down in a matter of weeks. This journey was turning into a life threatening event that I'd never forget.

We Can't Treat You Anymore

Neither of us could think of much else over the next week. Could it really be that bad? Was there nothing anybody could do? After all, we had only just begun the treatment and only really explored a single option.

There had to be another way, and there had to be other opinions on this matter, rather than the 1980's butcher's approach of "cut the whole thing out and be done with it".

We kept saying that the bladder wasn't even the main issue, how come it was suddenly hogging all the limelight? I thought I was being treated for colon cancer here. Nobody had ever mentioned bladder cancer before, including and especially not the genetics testing people.

* * * * *

Thankfully we had an appointment with my oncologist a week later. We were still in complete shock at that time, but we were eager to get his spin on things.

By the time we met him, there had already been a meeting with the Baptist tumour board. It's a weekly get together of all cancer specialists at a facility, kind of like a roundtable or think tank of all cancer departments in a facility. If there were "special cases" like mine, they were discussed with other specialists at the hospital.

Although I felt honoured to be mentioned, the outcome was only slightly less bleak than what we had hoped for. As is often the case at such meetings, there was good news and bad news.

The good news was that upon further investigation and re-investigation, I still only had a single primary cancer, namely colon cancer. The pathologist made a simple mistake based on assumptions rather than microscopic findings. There were no signs of bladder cancer after all, although it would have explained why the FOLFOX chemotherapy was ineffective. So that puzzle remained a mystery for now.

The bad news however was that the colon cancer could only have come into my bladder from the outside, and the recurrence of the tumour suggested quite clearly that it was not confined only to the inner lining of the bladder; it was also lingering on the outside of my bladder, and was apparently partying rather hard.

It was also confirmed (again) that my cancer had indeed invaded due to proximity only and during the course of the previous infection, rather than the blood stream. Basically, my cancer and my bladder were "neighbours", and things got out of hand when the tumour started growing.

In light of all this, Dr. Martinez’ idea of removing the whole bladder still seemed the safest option to stop this bastard from growing any further.

My oncologist had previously considered radiation therapy in addition to FOLFOX, but because my tumour kept bleeding, he didn't want to risk causing any further damage. For the same reason he had previously held off on treating me with that piratey sounding medication Avastin, because it may have led to even more bleeding.

Baptist Hospital at the time did not have the urological staff to perform radical cystectomies, which meant that even if a complete removal of my bladder was the only way going forward, they would simply not be able to do it.

Without further medical options at his disposal, my oncologist told us that at Baptist Hospital, they were simply no longer able to treat me.

With anything.

* * * * *

Despite of what we may have thought of him at first, no matter how depressed and tired the man looked from the first moment we met him, we could tell he was very sorry. It was an extremely awkward moment up in that treatment room at the Medical Arts Building.

I remember all of us just standing there, awkwardly not knowing how the story would progress. It was like the uneasy silence between casual acquaintances who know they didn't hate each other, but there was nothing left to be said or done. It was absolutely clear that this relationship was over.

As my friend Oliver described it once, "You're sitting there with somebody, and nothing really bad is happening, but being there together and sharing a moment just doesn't make sense anymore".

The phrase "we can't treat you anymore" doesn't really tell you as a patient what to do next. At least when you're out shopping, and Shop A doesn't have the product you're after, they're usually kind enough to recommend Shop B.

But not in this case.

Although he didn't say anything, the message couldn't have been clearer. "Please leave now".

I appreciate how tough this must have been for my oncologist. But saying nothing and just standing there wasn't helping either.

As tough as our previous appointment with Dr. Martinez was, at least he spoke to us and explained his reasoning. My oncologist on the other hand appeared as if he didn't care if I lived or died.

This was undoubtedly our last appointment with the man. Reading between the lines of that awkward silence, there was a message in the air that suggested we should "please exit through the gift shop".

We did as much, not bothering to book a follow-up appointment.

ACT 2

The Rubik's Cube Analogy

When I was a kid, I had a Rubik's Cube. Do you remember those? That twisty/twisted cube puzzle that kept children and grown ups awake at night and drove us all completely crazy?

I remember when my grandmother bought one for me in the early eighties. We went home from the department store on a tram in the afternoon, and I couldn't wait to start playing with it. I was careful not to shuffle the whole cube at once and made sure whatever changes I made could easily be put back. About an hour later, the whole thing was so mixed up that I could barely solve a single side, let alone the rest of the cube.

I kept trying and trying, getting angrier and more despondent as I did, because nothing I could do apparently would bring this twisted nightmare back to its original pristine and solved condition.

With over 43 quintillion possible permutations (43,252,003,274,489,856,000 to be exact), more than 99% of this planet's population cannot solve the Rubik's Cube without a solution. Considering those statistics, I was in good company. All I ever managed to do was one side and perhaps a few additional pieces. Still I gave myself a pretty darn hard time for not being able to solve this thing.

At school we were all into it, and some of my classmates could even solve more than one side - but nobody could ever solve the whole cube. Except for one guy who claimed he could do it, but the snag was that he had to take your cube home and present you with the solved puzzle a day later. Turns out he simply peeled off all the stickers and put them back.

Eventually the whole fad died and I simply gave up trying to solve the Rubik's Cube. It was seemingly impossible, and according to a newspaper article at the time, even Ernő Rubik himself doubted that there was a solution at first. Eventually he figured it out, with the help of many students at the Budapest University.

Fast forward some thirty years to 2004, when my wife Julia and I were on our honeymoon in Miami Beach. We had planned to stay there for two weeks, but we liked it so much that we extended our stay by another. We had flown back from Las Vegas, where we got married and spent almost a week celebrating with my friend John and my Mum.

Since we were both working in television at the time, we decided to get married when the NAB Show was in town, a big international broadcast and television exhibition. That fact made the whole trip tax deductible (but please don't tell Her Majesty's Revenue and Customs that).

A few days before we left Miami Beach to fly back to London, we discovered the Urban Outfitters store on Collins Avenue. That location has long been closed, but back then they sold all kinds of bric-a-brac, including retro gadgets. One of them was the re-released Rubik's Cube.

Retro was back in style, and both of us had fond memories of the puzzle. To keep us entertained on our upcoming long distance cattle-class flight in a couple of days, we decided to buy one.

It was so gripping to play with this twisty puzzle again, so much so in fact that on the day of our departure, we hiked it over to Urban Outfitters again to buy yet another one. We were both so cube crazy (again) that we both wanted to play with it at the same time on our journey back. We nearly missed our shuttle to the airport because of this crazy trip - but we got that second oh-so-exciting Rubik's Cube (as well as the shuttle bus to the airport)!

Turns out the flight was not long enough for either of us to solve the cube. Although Julia remembers that when she was younger, she could do it. It had been many decades since, and by now she had sadly forgotten how to solve the Rubik's Cube. Like kids often do, they can do things intuitively; things that when they grow older, they either forget or unlearn.

I kept playing with the cube every chance I got, on and off for several weeks. Long journeys to work on the tube were a great opportunity, or downtime at work itself. This thing had not lost its addictive properties over the years.

And then one day, out of the blue and to my utter surprise, I solved the darned thing!

OK, in the interest of full disclosure, there may have been the occasional bit of help involved, courtesy of the ubiquitous internet. Be that as it may, finally holding a solved Rubik's Cube in my hand, one that was solved by me after all these years, it got me thinking.

In fact, it gave me a huge epiphany.

This stroke of inspiration is still with me to this day. Here's what it taught me:

For several decades, I was convinced that I was not able to solve the Rubik's Cube. No matter how hard I would try, I wasn't going to do it. Maybe I was too stupid, too young, too fat, didn't have a high enough IQ - whatever the reasons were for rationalising it, the fact remained that I declared to myself that I was unable to solve that cube.

It made sense to me. My logical observation of the situation was in line with the reality I had created.

The truth is that everyone, as in every person on the planet (i.e. you, me, your Mum, you Dad, your sick twisted neighbour who keeps playing his music way too loud), ALL OF US can solve the Rubik's Cube.

All we need is the solution.

There really is no magic to it. There's a big difference between something being impossible, as in "not ever going to be solvable", and "solvable if you have a plan". That's what I found so fascinating to realise.

All these years I had steadfastly held on to a belief that something was never going to be possible; that something was never going to happen by my own hand, when all I needed was perseverance, patience, a bit of elbow grease and a small piece of paper showing me how to do it.

So I wasn't stupid after all. I was just like the other 99% of the people on this planet who cannot solve the Rubik's Cube by themselves. I simply hadn't learnt how to solve that particular problem.

This holds true not just for the Rubik's Cube: literally everything is easy if you know how to do it.

That's the beauty of us people: we can learn things. We love to learn. We thrive on learning new things, to figure stuff out, exploring new fields of modern as well as ancient technology, discovering new worlds. No goal is too far for us to reach.

* * * * *

The point I'm trying make here, is that we have a choice as to what we want to believe. We can choose to believe in whatever truth we want. Some people believe in God. Others do not. It's a choice, and we must choose whichever truth works best for us.

That may not always be a conscious decision of course. In my example about the Rubik's Cube, I chose to believe that it was impossible for me to solve that thing. I didn't know at the time that I could have made a different decision, and instead choose to believe that someday I MAY be able to solve the puzzle.

Do you understand the difference between these two statements?

Let me give you another example to illustrate my point. My Mum was recently renovating her upstairs apartment. It's a four storey house that her dad, my grandfather, had built in the centre of Bremen back in the fifties. The house now belongs to my Mum and her two siblings, and the small upstairs apartment hadn't seen a coat of paint since it was built, so there was a lot of fixing-upping to do.

When it was time to slap some wallpaper and paint on the new smooth walls, she decided to undertake much of the work herself. She did this during the winter months, where in Northern Germany the sun rises at what feels like 11am and already starts going to bed at about 3pm. Read: there's very little daylight during the winter. Painting and decorating requires adequate light to see what you're doing of course.

During one of our chats, she complained that there's just not enough time in the day to get all this work done. She said she would love to start at 7am in the morning, but it was too dark during those early hours. Likewise, she would love to keep working past 4pm into the early evening, but again the lighting conditions in the upstairs apartment prevented that from being possible.

No matter how hard I tried to bring suggestions to the table, she refused to see that there might be a solution to carry on working, regardless of the limited daylight that was available. I suggested that she could have bought some lights, replaced the ceiling bulbs with brighter ones, bought one of those funny hats that has small LED lights attached, the ones car mechanics use, the list goes on.

Granted, perhaps not all suggestions were feasible at the time; but my point is that when you keep looking, and if we're open to it, there may well be a solution to a problem. And sometimes, we need to think about such solutions seriously far outside the box.

If we choose instead to believe that there is no solution, and that there never will be a solution, then this is what will likely manifest in reality. We will not be able to see past this belief, which is nothing more than a figment of our Bullshit Brains. It's make believe. It's a rule we've invented and are sticking to.

The beauty of realising this concept is that we ourselves can re-write such rules in a heartbeat. All we need to do first is to realise the fact that we are in charge of creating those beliefs in the first place.

Had my Mum at least been open to the idea that there might be a way for her to start work early and finish later, then I have no doubt that a solution for how to do this would have presented itself sooner or later.

Instead, she stopped looking right there and then. There was not going to be a solution, and no matter what anybody would have said or suggested, there would have been a box full of excuses as to why none of this was going to work out. Period.

* * * * *

There's a technique we can use to overcome these beliefs. I call it "being open to small miracles". No matter how big or small your miracle needs to be, the first step in experiencing a miracle is to be open to the possibility that it can happen. Only then do any such miracles and wonders have the possibility of manifesting themselves. It is only us that can let them happen.

If we close the door to them early on, they cannot come to visit us. There's no way on earth! If we say right upfront, "nah, that's not possible" - then so it will be.

The movie K-PAX highlights this point: in it, Jeff Bridges plays a therapist, who meets a new patient played by the bloke out of House of Cards... what's his name... doesn't matter. He insists he's from the planet K-PAX and that he is here on earth for a holiday. Bridges' character doesn't believe that, because - let's face it, that's impossible - and instead sees a deranged guy ready for plenty of therapy and perhaps an elongated stay at the Funny Farm.

There's this scene in the movie in which Bridges' character asks him - Kevin Spacey, that's his name - that he should at least be open to the idea of not being an alien, and that he might instead simply be human, and indeed from earth. And Spacey's character says, "I'm happy to do that - if YOU, good doctor, try to be open to the idea that I am indeed what I say I am, namely an alien from the planet K-PAX".

* * * * *

It's not a very good movie, but the point is made nonetheless: at least be open to something, and only then can it happen. Only then can it come true. That doesn't mean there's a guarantee for it to ever become true, but at least by being open to the possibility, does it have a chance to manifest itself.

Why am I boring you with this half-philosophical mumbo-jumbo, when you had expected this to be a book about how I survived cancer? Well it's simple really: I chose to believe that I would survive.

Which wasn't easy by the way! I'm not saying I didn't have my doubts. In fact, in one of my darker hours I very openly discussed the idea of suicide with Julia. I'd rather administer a quick and painless death myself than be in agony for several months - if there is indeed no hope of ever getting cured.

It's kind of a logical decision my brain arrives at, complete with solutions of how to do it: head over to the nearest gun store, while you can still walk without too much pain. Factor in the waiting period with hand guns. Get some ammunition and ask for training while you're there. Rehearse the whole thing.

Or even simpler: use the permanently accessed port in your shoulder and inject yourself with air, that should do the trick. About 300ml should do it, preferably more (I did my research - those few air bubbles in the IV line are really nothing to be worried about).

I digress. Obviously I didn't do it, nor did I really want to either. Entertaining such thoughts isn't necessarily destructive, it's simply exploring some options on paper. Simple thoughts are never the issue. What counts is what one does with those thoughts.

I chose suicide to be one of the options, just like I entertained the idea that there might indeed be a cure for my condition, no matter how mutated and aggressive my cancer was. No matter how helpless my previous oncologist was.

I believed that I would be shown the right people at the right time, who had a solution that would work for me. And while I had no idea who these people were or how to find them, we met them anyway - just like I thought we would. I had believed in this. And it happened.

* * * * *

I'm not saying that attitude alone is the key to surviving cancer. Much like good doctors alone won't be able to cure a disease. The right medication for a particular case is definitely a large part of the whole process - but my point is that the other two ingredients, namely the right doctors, combined with your own positive attitude, are equally important on this unfathomable journey to recovery.

I can't guarantee that what worked for me will work for you. How could I? I can only show you what worked for me and share it with you. You must find your own way. Perhaps by reading about my journey, you will find some inspiration for your own road to recovery.

This is all good and well, but you may be asking, "how does all this relate to cancer and the rest of this story?" Well let me tell you: surviving a heinous disease like this is a miracle, plain and simple. You could even go as far to rate surviving cancer as something rather high on the scale of miracles.

No matter what cure the doctors have for you, in order for it to work, you have to believe in it to do so. You have to let there be a cure in your mind first, then the rest will fall into place. No matter what the actual cure is going to be called or what it's made of; this process starts in your mind.

If we declare a truth that says, "no matter what the doctors are going to do to me, I'm doomed, and nothing is going to work in my case", you'll stand a good chance of that becoming true. You stand a good chance that no cure will be available. Because you've made it a reality.

On the other hand, your truth could be, "I have no idea how they're going to do it, but I'm damn well sure they'll come up with something that works". In which case, your chances of survival have just gone through the roof. Because you're open to this miracle to happen in your mind.

* * * * *

How dare I make statements like that? Surely the only thing that cured me in the end was the right medication, thanks to the right insurance plan, under the observation of the right doctors, and nothing else. Do I have proof of any such esoteric BS as above, or any of my other Haight-Ashbury ramblings from the fringes of reality?

Gee, that's a tough one. You could argue that I AM the proof. Because I am alive.

You could just as well argue that I was plain lucky. Maybe it was God's Higher Power that intervened and let me live, because His plan was for me to write this book and tell you about my journey. Maybe there is no God, and just like evolution, my being alive was a complete coincidence. Maybe reality isn't actually what we think it is, and none of us are either alive or dead, and instead we're all just clusters of energy observing each other and the objects we've created with our minds.

At the end of the day, who knows. No-one can tell. All I can do, as I said earlier, is to show you what happened for me and how I got through it. I can tell you what worked for me. And on the off chance that this inspires one of you out there, then it was worth all the effort it took to write and release this book.

If it helps a single soul, then I guess I have served my purpose.

Higher Power

It was a weird time. I don't remember much else about this period, but I remember that. That it was weird. It was like I was in a state of trance, observing the situation not from my perspective, but from somewhere else.

I really don't mind somebody telling me "hey I don't know how to deal with your problem". Not at all. None of us can know everything.

However, I do mind if a medical professional in a particular field remains completely silent after that phrase. Don't you have colleagues in the industry? Don't you know a guy who knows a guy? Don't you have "the competition" that you can send me to?

Can't you give me anything that could get me to the next stage, even if it does not? After all, we're talking about my life here. Isn't my survival at this point the paramount goal for a hospital of any calibre, let alone one of the largest chains in South Florida?

Perhaps not.

Perhaps the new slogan should be "Miami Cancer Center. We don't care, and it shows".

* * * * *

The simple situation was this: I had a killer tumour growing inside me, a ticking time bomb that had already destroyed more tissue than we all had expected. It was only a matter of time until this thing would overtake other vital organs and shut my whole body down for good.

We'd tried attacking it, and it wasn't responding to conventional treatment. It was laughing about the first line of chemotherapy treatment. It didn't even slow down, it was throwing a party like it was 1999. Unkillable. Unstoppable.

We had to find a working treatment fast, and there was no time to lose. Thankfully we had a single lead we could follow up with: another urologist, who was referred to us by Dr. Martinez. In his own words, he described him as "this guy is excellent, he does all my cystectomies for me".

I'm sure he didn't mean for it to sound like this, but it suggested to me that

a.) this guy did in excess of 20 radical cystectomy procedures every week, and that

b.) this guy's slogan was "Cystectomies-R-Us" and that obviously he did nothing else.

Probably another surgeon, I thought, thinking with his knife rather than anything else.

He was talking about Dr. Caso, who was at the time working for Mount Sinai Hospital, a somewhat competing hospital much closer to us on Miami Beach. I duly noted the man's number down in my contacts. To remember who this was, I also made a note after his name: "The Bladder Butcher".

Losing my bladder without exploring other options was the last thing I wanted to do. Not knowing what else we could do, Julia and I scoured the internet for alternative cancer treatment options. I did make an appointment with Dr. Caso nevertheless, just to explore this avenue in case it was absolutely necessary.

My previously highly judgmental opinion about Dr. Szomstein turned out to be completely wrong, so I thought let's give Dr. Caso a chance before closing our minds too early. After all, he might turn out to be someone very helpful in the future.

We always got on really well with our neighbours on the 4th floor of our apartment building, a small seventies style condo complex that mainly consisted of owners rather than tenants. Gladys and Donald on the right, and Alfred and Alejandra on the left.

In fact, Gladys and Donald were at one point our landlords when we moved in, and effectively Gladys and Donald rented their apartment from Alfred, and we rented ours from Gladys. Remember that "moving without moving" story I talked about earlier? I just remembered that I made a time-lapse video of the whole affair. You can find it on my YouTube channel if you're interested.

I'm mentioning Gladys and Donald here because during this period of complete desolation, while trying to find new treatment options, we bumped into them one day. They were aware of my situation with cancer, but I wasn't very social at the time and hadn't been sharing much news as to how it was going for us (or rather how it was not going).

Only my closest friends and family knew the distress we were both in. Maybe it's because I've been living in Britain for too long, and the stiff upper lip attitude had rubbed off on me. One does not complain too much, even in the toughest of life's moments. Or perhaps I'm just not one to complain much.

At that moment in particular, it was one of my darkest hours. My whole body language was showing it. I could only walk relatively slowly, I was in physical pain, and my mental situation wasn't a happy one either.

When Gladys asked me how I was doing, I simply burst into tears. I told them the whole story there and then. Turned down by my hospital for treatment, having been told that the only way to survive would be to lose my bladder - a ticking time bomb growing inside me. I told them how hopeless we felt, and that we had no idea what to do or where to go next.

So Gladys and Donald suggested that we join them next Sunday at a prayer meeting. Apparently there was a small and very intimate outpost chapter of the Calvary Church right here on South Beach. They met on Sunday mornings on Collins Avenue, in a small tattoo parlour of all places.

Gladys suggested that maybe we'd get some positive energy out of it. We should come along if we felt up for it, and not feel bad if it wasn't for us. It was a lovely thought from lovely people, and there was no pressure to make a commitment.

Neither Julia and I are active church goers, nor can I say that I'm particularly religious - but at the same time, I've always believed in something of a Higher Power, something that makes the universe spin, an energy source that we all get to experience from time to time, whether we want to or not. But in regards to church, the last time I had set foot in one was at my own wedding back in 2004.

I admit that my first thought was, "Prayer Meeting? In a tattoo parlour? On Collins Avenue?". But I really appreciated the invitation and I thought long and hard about it. Without making an immediate decision, the idea stayed with me for the whole week.

We hugged and parted ways, each of us going about our daily business.

* * * * *

When that Sunday morning of the prayer meeting came, I suddenly had the spontaneous desire to go. After all, I had nothing to lose and everything to gain. I was not aware that we had any other plans for that Sunday either.

However, what I did not do very well is to communicate my desire to go to Julia. I kind of sprang the idea on her only an hour before the meeting was due to start. So we ended up having a row about it.

I was wearing a catheter at the time and wasn't very well, not being able to walk a lot or sit down on hard chairs. Julia was much more concerned about my health than I was. Nevertheless we did make our way downstairs and waited for the bus.

Usually we would have cycled the few blocks up the road, but that wasn't something I was able to do anymore. And walking twelve blocks wasn't possible for me either, so we decided to take the 25c bus. Thankfully it has a stop right outside our house.

We have a state-of-the-art WiFi bus tracking app, courtesy of Miami Dade County. It tells us when the next bus will arrive. We use it all the time to make sure we arrive at the bus stop on time. Although the bus was scheduled, it did not show up. It's always been a slow and unreliable service on Sundays.

Tired, marooned by my physical discomfort, and discouraged by having upset my wife with my spontaneous hare-brain decision, I said, "it was a stupid idea, let's just go back home and forget the whole thing".

And then the bus came.

Even though it was already 10am, we decided to jump aboard and see if we could make it.

When we got off at around 12th street, it occurred to me that I had no idea which of the many tattoo parlours we were meant to attend, or in fact where the entrance was. Thankfully Julia had Gladys' number and texted her to see if we were too late and ask for directions.

Now I must admit that even when guided by the world's best and most expensive GPS systems, I have a rare talent to miss where I'm supposed to go. I'm hopeless with maps and directions, always have been, probably always will be. I'm much better navigating the 3D environment in a computer game than making sense of a simple road grid system in reality.

Thankfully my wife is much better at the job of finding places, but even she managed not to find this particular tattoo parlour. It was like an invisible door that was visible to everyone else except for us.

After much searching and investigation, we did manage to find the tattoo parlour in the end. It was just coming up to 10:30 when we walked through the door. We were being welcomed with open arms by a group of people we had never met, except for Gladys, Donald and their little girl Olivia. But there were no strangers here. Neither the people who ran the meeting, nor the odd homeless person who had perhaps only come in for the free coffee and danish. It seemed like everybody had a story; but it didn't matter what anybody's story was, or why they were here. All that mattered was that we were all there, at that moment in time. I had never experienced anything like it before.

It was around Father's Day, and a man who was seemingly the preacher explained that today's meeting was going to be a little different than usual. It was more like a podium discussion. Three fathers were "on stage" (if you could call it that), talking about their experiences of being a father, and what it meant to them at this point in their lives. Donald was one of them, and their daughter was only a few months old at the time. The other two dad's had older kids, and the experiences they shared were manifold.

Father's Day means very little to me. I've never really had a relationship with my own Dad. He was working a lot and we never spent much time together. Neither am I a father myself, nor have I ever thought about becoming one.

On the surface, it seemed like the meeting and I did not have very much in common, yet I felt I could relate to many of the experiences the dads were talking about. One anecdote in particular struck a chord with me, in which one father was talking about how he had split up from his wife and he had a difficult time maintaining a relationship with his child. He felt that it was as if God, through this painful experience, had reminded him that there was a Higher Power in his life, at a time in which he had apparently forgotten that one existed.

When the meeting came to an end, the preacher, a young lad in jeans and t-shirt rather than dark robes and a long white beard, said that anyone who is ready to begin a relationship with God should raise their hand and that his or her problems would be taken care of.

That was my cue. It sounded like the final test in a series of events that ultimately led me here. I keep thinking back to that day, and I was beginning to realise that everything we had experienced up to this point was a test: the row, the bus, us not finding the location; at any point were we given an alternative path to stray away. And the question at each of these points was, "How much do you want to be alive? How serious are you about this?"

The preacher asked me if I needed some serious help with "my current problem". I raised my hand and received a free illustrated copy of the bible. I still have it, it's called "Word" (not made by Microsoft).

* * * * *

We spoke to the preacher afterwards, about how touched I was by what one of the fathers was saying at the podium discussion. I explained that although the subject matter wasn't anything I was close to, the words had struck a chord for me. He listened to me attentively and said, "You know, that's how God talks to you".

I had never looked at it that way. I have since listened very differently when people tell me things.

We had another very warm experience that day, when Gladys, Donald, the preacher and a group of total strangers offered to pray for us there and then. We formed a circle and stood shoulder to shoulder, hugging the person next to us, while the preacher said "Dear Lord, dear Jesus, please give Jay and Julia everything they need to overcome their problems; give them all the energy to sort out everything they need, take care of their health and insurance and happiness".

I had never experienced a spontaneous group prayer before. It was an extremely emotional experience, being given so much empathy by a group of people we had never met. No matter if things were going to get better from now on or not, that Sunday was a wonderful and fulfilling experience. It was just what we needed in our dark and troubled times.

Gladys and Donald said they'd be praying for us when we left. I'm sure they did.

The Bladder Butcher

We had a single lead to move our journey forward: the new urologist whose number I saved in my phone. as "The Bladder Butcher".

When I made contact with his office to schedule an appointment as soon as possible, the first thing I was told was that they didn't accept our insurance plan. In fact, nobody at the Mount Sinai group was accepting our plan.

This was crazy, because it meant that although we were finally insured, we couldn't see the doctors we needed at this time of crisis. As such, it felt like we were no better off than when we were not insured at all.

I told the office we were "happy" to cover the out-of-network cost with our insurance, or become self-pay patients. I also explained that the immediate issue is of course my health, and that we had no time to lose. We agreed on something along the lines of $250 just to get through the door and see the man.

It would have been great to get an appointment at the Miami Beach office, but that would have taken several weeks. The lady on the phone said that she could fit us in for that very week at the Hialeah office.

This was one of the many satellite offices that Mount Sinai and other hospitals maintain in the greater Miami area. Doctors travel to several of these offices every week and can see a larger number of patients that way. Although it was a 40 mile round trip away from where we lived, we decided to take it and see The Bladder Butcher later the same week.

* * * * *

To get to Hialeah on the cheap, we decided to book an STS ride the day before. The idea is, much like an Uber or Lyft ride, that a passenger car or bus comes to your place, picks you up, and drops you off at the location of your choice, as long as you book a day in advance. All that for the cost of a mere $5 flat rate.

The downside is that an STS ride may be severely delayed, both in picking you up and dropping you off. This is both due to unforeseen traffic as well as ride efficiency, in which the drivers are told to pick up and drop off as many passengers in one journey as they possibly can. So while we were waiting to be picked up, the driver had to pick up other passengers going the same way, and drop people off in the most efficient order.

We didn't know any of this at the time, and as a result were dropped off almost an hour late at the Hialeah office. Not the best first impression that we could have made, considering the importance of the meeting.

I genuinely hate being late. It adds so much stress to a situation, and quite frankly, more stress was the last thing we needed at the moment.

Luckily it wasn't a huge problem, and we only had to wait a little while. The building itself was a rather odd looking two-storey construction in the middle of seemingly nowhere, which also housed a bank and some other mysterious organisation.

On the inside, Mount Sinai Hialeah looked and felt just like any other waiting room: a blaring TV, showing some Spanish programme (in the wrong aspect ratio of course), specialist health magazines on small coffee tables and several other patients made up our company. We were all listening attentively to a nurse, which was not easy considering the high volume on the TV.

Since this was our first visit, we were given some paperwork to fill out while we waited. Among the standard questions for new patients were the usual ones that you always answer with "no". But there were some new ones too, such as the one category that inquired about "were you ever diagnosed with cancer". I guess the time had come for me to answer with "yes". There was also a space for recent surgeries. It was barely big enough for me to list everything I had survived so far.

While filling out the paperwork, I remember an elderly gentlemen whom I felt very sorry for. He was clearly in distress. The man was in a wheelchair, with a nurse or perhaps wife by his side, as well as a younger lad with a laptop (probably his lawyer).

The gentleman in question frequently got up from his wheelchair and shouted "ay conyo" several times in a row. I didn't know what that meant at the time, but I had a clear vision that I did not want to end up like him as a result of the Bladder Butcher's treatment.

I decided to keep focusing on the task at hand (i.e. the paperwork), trying not to pay too much attention to the section that asked for detailed information about patients with neo-bladders and urostomies.

After the uncomfortable and cramped STS ride, I remember having to go to the bathroom rather urgently. When I asked where it was and if I could use it, the nurse explained that it's standard procedure to provide a urine sample as part of the examination. It was a urologist's office after all, so it made perfect sense. She asked me if I could please hold it until I was seen by the doctor. I explained that that might not be possible for me, briefly touching on the state of my entire abdominal region.

Thankfully she understood my dilemma and we made a deal: she provided me with a cup and explained where the lab was, and if I could please drop off a sample on my way into the treatment room. I knew this wasn't the usual procedure, and I greatly appreciated the exception she made for me.

Despite the eerie building, I was beginning to take a liking to the people of Mount Sinai.

* * * * *

When it was our turn, a nurse came to pick us up and lead us to a treatment room. She took my blood pressure and I briefly explained my case, why we were there, and how very much I'd like to keep my bladder.

She could see how distressed I was about meeting the doctor, and she assured us that Dr. Caso was one of the best. She also told us that her mother had been smoking like a chimney until she was diagnosed with lung cancer, at which point her mother decided to quit. She was doing better and had survived cancer. The nurse told me to stay strong and that I too would survive!

No matter how many times you hear such encouragement from total strangers, it always helps a little bit. I never ever got tired of hearing it. It also made me cry when people told me such things.

* * * * *

A few moments later, Dr. Caso came in to the room. He he was carrying a wad of 200 pages of printed paper without a folder and dropped it on the table in front of him. He shook our hands and said, "give me a moment while I study your case - there appears to be quite a lot of information here".

It's not often that you meet the man who might remove vital organs from your body forever, so it's difficult to imagine what these people would be like. Dr. Caso was pretty much the opposite of what I had expected. Not that I had a particularly clear fantasy about the man.

Considering his experience, he was a little younger than I had thought he would be, had a shaved head, perhaps with a hint of Hispanic decent, and he had deep dark eyes. Although bilingual, he spoke American without a traceable accent. In addition, I remember that Dr. Caso had an air of calm about him.

When he was finished skimming the ample paperwork, he said these wonderful words that I'll never forget: "Hopefully I won't be doing much of anything for you".

That was a big relief to me! Perhaps here was a surgeon who wasn't thinking with a sharpened scalpel after all. "Suggesting a cystectomy is a little bit radical in your case, but Danny... or more accurately... Dr. Martinez did the right thing in referring you to me".

Turns out they knew each other from university days, and from what I could gather, Dr. Caso was Danny's mentor. What a great connection to have. I felt like it kept my urinary issues in the family.

Dr. Caso also suggested that my cancer sounded more like a stage 3 or 3.5 rather than stage 4. It had been re-classified on paper due to its aggressive evilness. Stage 4 cancer would suggest that it had metastasised via the blood stream, but mine had only done so due to physical proximity.

He suggested that we keep in touch during the course of any further treatment, and that if any further urological problems should arise, he'd be there to help us along the way.

"Another issue I guess is your insurance", he said, "so I'll try and keep that to a minimum from my end". If there was anything he could help with, he suggested we simply call him. There was no charge for a "chat on the phone with a patient".

We thanked him for his time and encouraging words. I'll never forget that meeting. How nervous I was and how distraught. Everything was up in the air at that time, and no-one seemed to have answers. It helps so much when another medical professional takes a quick look at your case and puts your mind at ease.

Dr. Caso had done just that. He was probably the one person whom I had least expected to be so helpful in a time of need.

I realised that I had done him a great injustice by thinking of him as the Bladder Butcher. On our way back, I duly changed the description in my phone to "Cystectomy Guy".

Mount Sinai

While Baptist Hospital is a two hour trek away from our home address, Mount Sinai is only 35 blocks up the road. Both facilities have some of the largest hospital campuses in the greater Miami area, and they each have one of the largest cancer treatment centres in the state of Florida. It's almost impossible to make an internet search for "cancer treatment" and not come across either facility.

One of the options we wanted to explore further was radiation therapy. We hadn't even been referred to a radiation specialist by my previous oncologist. All we had was his opinion that in my situation it might not have been a safe option. I wanted to hear directly from someone in that field of expertise whether it was a viable avenue to explore, not have one of my potential solutions dismissed so quickly. He hadn't offered me a referral, so how could I be sure we'd covered all bases?

After surfing the wonderful world wide web for a while, we ended up with a long list of doctors to phone over the next few days. There was no particular order or preference to that list, since we didn't know a single one of them yet, so I phoned the first man we had found. He happened to be working for the radiation oncology department at Mount Sinai, and being so very close to where we lived, he seemed like a good match.

The wait time on the phone was practically nil, and I spoke to a nice lady named Vivian. Not knowing who she was, I tried to explain my case as quickly as possible, and said that I'd like a second opinion about it.

To my great surprise, Vivian suggested that I speak to the head of the department, Dr. Nicolas Kuritzky. He happened to be standing next to her.

She passed the phone over, and being even more surprised than before, Dr. Kuritzky immediately lent me his ear. Just like that. This wasn't a "quick chat" either. My case was difficult, and I was emotional. I had a lot riding on meeting the right doctor, and it all had to happen as soon as possible.

Without an air of being too busy to listen to a total stranger with a lengthy story about aggressive cancer and what steps to take next, Dr. Kuritzky took his time to listen to me. What a wonderful surprise that was. Trust me, as we got to know this doctor, he has anything but spare time on his hands.

When I'd finished, he said, "Why don't you come in and see me tomorrow? Just come in before 2pm and bring your case file. All 200 pages of it. Then we'll see what we can do."

* * * * *

I started crying when he made that offer. Things were starting to fall into place. What struck me was that I'd only phoned a single doctor. This was like writing a single application for a job and getting it. He was the guy. This meeting was meant to happen.

We settled on a time to meet and hung up, relieved to have found someone else who would be able to help.

This was the first time that it became clear to me that fate was starting to move some cogs in my favour. The first number we dial, more or less randomly from an internet search, leads to me casually speaking to the head of the radiology department in one of the largest cancer treatment centres in the state. Not only that, but he just happened to be standing next to the receptionist at the time of my phone call. He is also, amazingly, unoccupied enough to listen to me at that exact point in time.

Coincidence? I think not. There was a Higher Power at work here, and it would continue to show its hand and involvement over the following weeks and months, even years to come.

Meeting Dr. Kuritzky

The next day we made our way over to the Radiation Oncology Building on the Mount Sinai Hospital campus, located by the beautiful Biscayne Bay, at 4300 North Bay Road, overlooking the water. You can have some stunning views from many of the buildings and treatment rooms here.

Although the campus feels a little outdated compared to Baptist, lacking a cohesive colour scheme or architectural style, the feeling and human impression I got was that of a cosy home atmosphere. Like coming to your favourite roadside diner.

Radiation Oncology is not a large department. Although physically connected to the main hospital, it appears to be a little bungalow run all by itself. When we came in, a friendly receptionist named Erica greeted us - clearly not the woman I spoke to on the phone, yet she knew who we were and that it would only be a few moments until Dr. Kuritzky could see us.

We didn't have to wait long until we were shown into one of the small greenish treatment rooms. Because I was only there for a chat, no triage was necessary this time. I was not in any great discomfort physically, but both Julia and I were on or last legs mentally and spiritually. My future survival depended on this meeting, and we were very much looking forward to what Dr. Kuritzky suggested.

Would these people be able to treat us? And if so, with what methods? And how were we going to pay for all this, considering that Mount Sinai did not accept our insurance plan?

A few moments later, Dr. Kuritzky came in and introduced himself. He was wearing plain clothes, no white coat, and didn't really look like a doctor at all. He had my 200 page printed file with him, which had been faxed over on my orders by Baptist Hospital the day prior.

My case hadn't even really started yet, and I had already amassed a whole book. Perhaps one day I'll publish it. Particularly the surgery reports make wonderful bedtime reading. Dr. Kuritzky was still reading the stack of paper when he sat down. He apologised for his delay in seeing us, which had indeed been caused by the length of my file.

I briefly summarised what had happened up to this point, while he kept going over what appeared to be some particularly interesting passages in my case file. I also stated why we were there and what we ideally wanted to get out of the meeting: continuation of my cancer treatment, which would preferably not involve a radical cystectomy.

As he heard me speak, the discussion inevitably turned to where we were from. In this case I didn't mind, because I noticed a familiar accent in Dr. Kuritzky's soft and laid-back tone of voice myself. Turns out the man was from South Africa, but had been living in Miami for many years.

There's a German saying that translates into "the world is a village". This is so true for the city of Miami, where everybody seems to be from somewhere else (except for Dr. Caso and Dr. Martinez, both of whom have grown up here).

"So you have Lynch Syndrome", Dr. Kuritzky said. Begrudgingly, I agreed. "You're also K-RAS positive, did you know that?" he asked, which was something we did not know at the time. Although we had seen the genetic test, neither Julia nor I are gifted medical professionals and as such, much of that report sounded like Chinese to us. We told him as much and were interested to find out what K-RAS positivity meant.

"It's another genetic mutation", he explained, and that "it only happens in a small number of patients". As I found out, the K-RAS gene makes my particular type of cancer a lot more aggressive than regular colon cancer.

This was a shocking revelation to us. Dr. Kuritzky explained further that this mutation is the reason why the first line chemotherapy treatment with FOLFOX hadn't been working: it is known to fail in 98% of all patients with this mutation.

Why was I even given it then?

My first reaction to this news was sarcasm, my favourite coping mechanism for such situations. "Double-screwed", I remember thinking, "always have been, always will be. And here's the proof!"

But Dr. Kuritzky just said, "Actually, I believe that makes you an ideal candidate for immunotherapy. My colleague knows more about that than I do, let me quickly give him a call". And just like that, he asked his secretary to put a call in.

We had heard rumours about immunotherapy, but didn't know anything concrete about it. We had even seen leaflets at my previous oncologist's office about immunotherapy, mentioning something about "voluntary medical trials". It didn't sound kosher though, and we never discussed this as an option.

While we waited for his colleague to return his call, we discussed my ongoing bleeding inside my bladder and the major problems it was causing me. I explained that I had been turned down from having any radiation treatment as it could make it worse.

As I was explaining this, Dr Kuritsky just slowly shook his head from side-to-side and then said some magical words: "No, radiation therapy actually stops bleeding. In fact, we use it during open surgery procedures when bleeding can't be stopped any other way".

WHAT? Are you seriously kidding me? Could you just say that again? This was another revelation and another fantastic glimmer of hope that had just been delivered.

Only moments later, the phone rang. It was Dr. Mike Cusnir, who was soon to become my new oncologist at Mount Sinai. He confirmed that Lynch Syndrome patients with K-RAS mutations were responding well to immunotherapy.

It sounded as if Dr. Cusnir was in fact happy about this fortunate accident, that I was in the building with such a rare condition. He was very much looking forward to meeting me and perhaps entering me into an immunotherapy trial as soon as possible.

How about that?

Within minutes, my life changed from being the guy with an untreatable strand of cancer, to becoming a test subject for a new revolutionary miracle cure.

In medical terms, we didn't really understand the ins and outs of what was to happen next. Plus there was still the insurance situation, which we also discussed with Dr. Kuritzky at that meeting.

What did change dramatically was our outlook. We had just been given hope that there was indeed a cure for what I had. We even discussed several options.

Not one of them, I was quite happy to hear, included a radical cystectomy.

Insurance Issues

The major issue with everything that was going to be done at Mount Sinai was our insurance plan. We had a plan called Blue Select, which appeared to cover more or less every doctor and hospital in the greater Miami area, except for Mount Sinai. So basically everything that we currently didn't need.

Mount Sinai and the doctors who had offices on the campus were classed as "out of network". This meant that our insurance would cover only 50% of the costs incurred, while we were responsible for the rest. Such a deal doesn't sound "too bad" on paper, but in reality it's still more or less unaffordable if one month of treatment was going to cost $60,000 or more.

Although this was a huge problem in both our heads, Dr. Kuritzky made it sound like a non-issue when he explained that there are always options to deal with these matters.

"You can work out a payment plan and agree to pay a minimum amount. Or sometimes we can even petition the insurance to accept your plan here because of special circumstances. And your last option is to accept the fact that you'll go bankrupt."

He also explained that on the credit rating, companies that use such systems when you apply for credit would look very different at 'medical debt' compared to 'regular debt' here in the US.

The point he was making was that there was no need to worry, and that the financial side of this nightmare was not something we should concern ourselves with at this time. It was going to be something that could be sorted out, no matter how difficult or impossible it appeared at that moment. More important matters were at stake, for example stopping the cancer for destroying my body.

And right he was. I know that now. At the time, it all felt like another dimension to the whole nightmare.

Needless to say, we still worried - simply because we had no idea what was going to happen next, neither with my health, nor if we'd find a potential cure for what I had, nor how to pay for any of this.

* * * * *

A few days later, returning home from having a PET scan in South Miami during an STS ride, Francy from Dr. Kuritzky's office called. She was one of the many assistants in the department that greatly helped us through this period with a happy smile.

Francy had called to give us some very good news: Mount Sinai had found a way to accept our insurance, and my treatment could proceed. Huzza!

To this day, we have no idea exactly how this insurance deal was worked out, but we'll remain forever grateful for the fact that there was a way for my treatment to be possible. I was cleared to get the radiation and whatever else was necessary without having to pay a single cent.

It was another one of those moments at which I felt that a Higher Power was looking after me, and that it had plans for my future.

Radiation Treatment

My radiation treatment would begin only one week later. Dr. Kuritzky new full well that we had no time to lose against the enemy we were fighting.

The procedure started with an initial session, at which I was going to get three extremely small tattoos on my body: a single dot on the left and the right side of my hip, and one below my belly button.

These tattoos are so small that they can hardly be seen and would easily be mistaken for pigments, so there's no need to ever remove them. Perhaps one day, I'll ask a skilled tattoo artist to "connect the dots" and incorporate them into a larger piece of art.

When I did some initial research, I saw tattoos that would be made up of several hundred dots covering a relatively small area of only several inches, but I guess times have changed dramatically. Glad to hear it, because those tattoos looked rather dramatic (and unincorporable into a larger work of art, no matter how abstract).

My three micro dots were there so that in this initial CT scanning session, my body would be put into the exact same position as on subsequent sessions. The scan itself was carried out by a trained nurse who gave me instructions of when to hold my breath. During the procedure, I was lying on my back and was moved in and out of a big round wheel thing that was humming quietly (made by the friendly people at Siemens I remember).

A CT scan by the way is the equivalent of roughly 400 x-ray images that are taken from various angles of your body in slices. When put together again, your body can be viewed as a 3D image and therefore visualised and examined by a radiologist. That's how internal organs and tumours can be exactly measured and subsequently targeted by radiation.

I remember that Julia was very regularly worried about the amount of x-rays I had received over the last 12 months, going back to the summer of 2015. When put together, I would have had the equivalent of about 8000 x-ray images in total. It's a miracle that I wasn't glowing in the dark by now.

In the room next door, together with Dr. Kuritzky, another friendly lady named Mary from Manchester was evaluating the digital images. Hearing a Mancunian accent in Miami is rather rare, and it added a lovely and relaxing familiarity to the otherwise otherworldly experience for both Julia and myself.

Mary was known as the dosimetrist (pronounce the second syllable to get it right, as in do-SI-me-trist), and in that capacity she was responsible for calculating the exact dose of radiation my tumour was going to receive and from which angle.

Dr. Kuritzky explained that he planned on giving me roughly 60 daily radiation treatments altogether, but we'd stop halfway through to re-scan me and adjust the doses accordingly as the treatments went on. The radiation was going to be administered 5 days a week, Monday to Friday, with two days break over the weekend to give my body a rest.

Radiation Therapy works on a cellular level. When ionised beams hit the tissue in question (in my case, the cancer tumour), the DNA in all radiated cells is damaged so they won't be able to multiply or repair themselves. It's known was a Mitotoc Catastrophe.

A week or so after my initial CT scan, my treatment would begin in earnest. The radiation oncology department was based in the Blum Building at Mount Sinai, a small bungalow-type extension that was annexed to the Welcome Centre at the Miami Beach campus. The building had no windows, featured a small waiting area and changing room, two main radiation suites and several small treatment rooms for meetings with the various doctors.

My daily procedure would be to arrive at the Blum Building in the afternoon, roughly around 2pm or 3pm. A friendly driver from the ZUNI transportation team would pick both of us up, so there was no need to catch a bus or find a ride, all courtesy of Mount Sinai.

I'd get undressed and change into one of those greenish hospital gowns, followed by a visit to the adjacent bathroom. My bladder was supposed to be as empty as possible prior to each treatment. It wasn't like that for everybody though: other patients whom I met were supposed to have a full bladder to minimise potential side effects. Different rules for different people.

A short while later I was called into the main treatment room by one of the friendly radiation technicians. The big dark blue machine looked a bit like the time-travelling machine in the movie Twelve Monkeys by Terry Gilliam, although the room itself was much more inviting and better illuminated.

It looked like a magnificent piece of technology: a sort of "bed" at the centre and a rather complicated gyro setup that could rotate 360 degrees around any part of my body, all held up at one end by a big metal cupboard. What made it look even more futuristic was that the whole machine appeared to be made from a single piece of metal. Very high tech, and not something you see everyday.

As Dr. Kuritzky explained it, "This was all the rage maybe ten years ago, but now it's more like a flat screen TV... everybody has one".

This particular machine was going to deliver Intensity Modulated Radiation Therapy (IMRT for short), in which the treatment head would rotate around my affected area and deliver more or less radiation, depending on the angle of the treatment head in relation to my body. This was so that the tumour could be destroyed as efficiently as possible, while minimising side effects on healthy tissue.

I have some pictures on my website and links to the exact equipment if you're interested. Check it out at supersurvivor.tv.

For each session, usually two technicians would prop me up on that stretcher type thing in the middle and line up my three little dot tattoos with red laser crosses that were emitted by the machine. When I was in place, both of them would leave the room to operate the machine from the outside. I was however watched on a live camera, so in case something went wrong, I could always give them a quick wave. Fortunately this was never necessary over the course of my treatment.

The first run was always a practice/calibration run, in which the treatment head would revolve around my body, first clockwise, and then counter-clockwise. This was followed by the "real" treatment, which to me sounded (and felt) exactly the same.

The administration of radiation therapy - at least to the pelvis - is completely painless and has no immediate side effects. I never felt a thing until several weeks into the procedure.

All in all it was about 20 minutes of "me time", in which my job would be to lie there as still as possible (still breathing of course) and not move. I usually seized the time to close my eyes and relax, praying for the whole team at the radiation centre and thanking God for another day on this planet, and the fact that this treatment was an option for me at this time in my life.

After the treatment I went back to the changing room, usually grabbed a water and a snack, and then we waited for the driver to pick us up and bring us home again. That was my quiet daily routine in the summer of 2016.

* * * * *

After only three treatments, something rather remarkable happened: I had stopped bleeding from my bladder. Literally overnight and for good. I didn't trust this at first of course and thought it would come back.

But when it didn't, it felt like a miracle had happened. I never had a single blood clot clogging my urethra again. One major chunk of stress had been removed from my life, one that had accompanied me since February, for almost 6 months by that time.

The fear and potential panic that accompanied every single bathroom visit several times a day had stopped literally overnight, without any noticeable side effects for me. I didn't trust this feeling at first, but remarkably, day after day, it was proven that the bleeding had definitely stopped.

Did I mention this happened after only three single treatments?

For me this was the first time that we'd actually made any progress towards wellbeing since I was diagnosed with cancer. The first time I had seen any treatment working in this horrific nightmare that was now my life.

Once every week I would meet Dr. Kuritzky for a chat, so we could both check how the treatment was progressing. It was a good opportunity to report anything I've noticed as a result of the procedure. When I mentioned the above milestone to him, he seemed much less surprised than I was. What to me was a miraculous occurrence was probably expected treatment behaviour to him.

My most recent information was that radiation therapy could all but aggravate bleeding from cancer tumours. What on earth had we been told at the previous hospital?

Who cares. Perhaps it was all meant to be this way, and part of a bigger plan that neither Julia nor I could see at the time. At the end of the day, we had found a treatment that was seemingly working, and a team of people who were willing to take care of me and cure my fatal illness.

That was all that counted for now.

FOLFIRI and Dr. Cusnir

The same week I started with the radiation treatments I was also going meet my new oncologist, Dr. Mike Cusnir. Not having had the best experience with my previous oncologist, I didn't quite know what to expect from this one.

I had heard the word "oncologist" many times before, and I knew that it would be somebody in charge of my cancer treatment. But since I already had Dr. Kuritzky doing such a marvellous job, there was a bit of confusion as to how the two of them would work together.

It took me a few weeks to understand that the radiation part of my treatment was relatively short, and that an oncologist is in charge of the long-term treatment of a patient. In my case, Dr. Kuritzky had planned 30 daily radiation sessions initially, which would take a maximum of 6 weeks to complete. Chemotherapy infusions on the other hand would take several months to show an effect, not to mention the several years of post-treatment observations. And that's what having an oncologist is all about.

* * * * *

When Julia and I met Dr. Cusnir for the first time, we both agreed that it was the exact opposite of our previous oncological experience. He was a cheerful, positive and forward thinking man who saw a positive side to everything.

As a cancer patient, that's exactly the kind of attitude you need to see in a medical professional. Someone who tells you, "Hey don't worry, we'll have this whole situation under control in no time".

Dr. Cusnir hailed from Colombia, adding to the otherwise already very international all-star cast in this story. He was about my age and had been treating cancer patients since the nineties.

When we met him, Dr. Cusnir had already familiarised himself with my case and had spoken at length with Dr. Kuritzky. He was very aware of the aggressive nature of my cancer and knew that we had precious little time to waste.

Most importantly, he had a plan for my treatment. It was called FOLFIRI, another chemotherapy cocktail based on a medication called Irinotecan, also known as Camptosar. This regimen included the same 46 hour take-away pump of 5-FU, anti-barf meds and steroids, just like my previous FOLFOX treatment. But the main medication was different and no longer platinum based.

And just as before, FOLFIRI was administered every two weeks in the infusion suite over nearly three hours. At the same time, my daily radiation sessions were going to compliment and enhance the effects of the chemotherapy. As you can imagine, this left little time for anything else.

* * * * *

Dr. Cusnir was also aware of our insurance problems, and one of the first things he did was to re-classify my colon cancer as "rectal cancer". He explained that insurances can be a little "difficult" when it comes to approving medication and the various scans necessary when they see the words "colon cancer". Perhaps because it's such a wide spread occurrence. Or because they're a bunch of bureaucratic cheapskates.

To make sure this wasn't going to happen to us, simply calling it "rectal cancer" meant that such technicalities were pre-empted and never going to become a problem in my case. I remember him saying "They play a game - we play a better one". And he was right: we never had a problem with approvals going forward.

When I mentioned my reluctance to any further surgeries, especially such drastic measures as bladder removals, he put my mind at ease: "Don't worry, we'll kill this thing with chemicals and radiation".

We were curious to find out why he wanted to try another chemotherapy at this point, and not start me on the mysterious wonder drug known as immunotherapy immediately, as Dr. Kuritzky had recommended it.

The answer was simple: Dr. Cusnir wanted to keep immunotherapy as a "trump card" up his sleeve and try a more conventional treatment approach first, with a combination of chemotherapy and radiation.

He explained that cancer treatment is very much a "try this and see if it works" type affair. If one option did not produce the desired results, we always had another one to try.

Not only did this man have a plan; he had a backup plan too.

My curiosity didn't stop there. I wanted to find out why I might have been treated with FOLFOX at the other hospital in the first place, when the genetic testing clearly showed that with my particular condition, said treatment is likely not to work.

When we quizzed Dr. Cusnir about this, he said that the reasons is a political one: FOLFOX was at the time (2016) the first-line treatment for colorectal cancer. Based on how well this stuff usually works for patients diagnosed with colon cancer, this treatment is always given initially. When unsuccessful, a second-line treatment would be given, and so forth.

In addition, other treatment options would become available. In fact, to be eligible for treatment with immunotherapy, the rule was that patients have to fail at least one conventional treatment first.

Had I come to Mount Sinai first, I would have received the same treatment that I had been given at Baptist. Dr. Cusnir explained that he might have bitten the bullet and given me the additional piratey sounding Avastin despite my bladder bleeding however, but it was by now a moot point. It wouldn't have worked anyway.

Politics aside, it does make you wonder how a genetics test is encouraged and approved, but not actioned accordingly. If there is genetic evidence that a treatment will not work, why give it to patients anyway and make them suffer? Could it be that it's more lucrative to both pharmaceutical companies as well as insurance providers?

Surely not! I'm pretty certain that playing with people's health so you can bleed them dry financially is illegal in this country. Mind you, so is assassinating a president. But I digress...

* * * * *

Efficient doctors of Dr. Cusnir's calibre often have nurse practitioners. These people are either nurses or doctors in their own right, who are working together with the main doctor. The main doctor makes decisions about scary treatments, while nurse practitioners can assimilate the patient's symptoms and relay them in "medical speak" to the main doctor.

During our journey, Dr. Cusnir was working together with a nurse practitioner named Dr. Karen Stephenson. We frequently discussed how I was feeling, what the results of my latest blood work meant and what the doctor's next plans for me were. She prescribed medication and tidied up the mad doctor's notes on the system.

Karen was fantastic. She was a great listener, understood our dilemma, and she was a good "interpreter" too. Sometimes Dr. Cusnir made suggestions that needed further explanations, and while he went off to see another patient, Karen could explain what this meant in detail. This system worked extremely well for us.

I loved the setup. If Dr. Cusnir was too busy or giving a lecture in a different state or country, I could always talk to Karen when I had a question, either in person, on the phone or via email.

* * * * *

My subsequent infusions were to take place on the third floor of the Comprehensive Cancer Centre (also known as "The Purple Building" because of its very flashy modern design and colour).

It was one of the newest buildings on the whole Miami Beach campus, and even on busy days it didn't feel crowded up there. The treatment room had both reclining chairs arranged as "treatment pods" that featured a TV and a second chair for someone to accompany and sit with the patient, but there were also enclosed treatment rooms with beds and en-suite bathrooms, overlooking the Biscayne Bay.

All this was arranged across a wide spacious white room, in the middle of which was a central office island. Several nurses were walking around with small treatment towers that housed both treatment paraphernalia as well as a laptop for medical records and other treatment related data.

The FOLFIRI infusions were given over roughly 3 hours every two weeks, usually on a Wednesday. We had a similar schedule as before, even though this time we didn't have to journey halfway across town using public transportation. Instead we were picked up by a dedicated mini van courtesy of ZUNI Transportation.

I have great memories of the team of drivers who were our regulars: there was Juan, who had a daughter in Tallahassee, a mango tree in his garden and eighties music locked in on the radio. He would often treat us to two or three mangos which were sweet, juicy and delicious; there was Manni, who had a boat in his front garden, which he shared with a friend (the boat, not the garden); and there was Daisy, who had a dream catcher in her car and sometimes brought along her puppy. They were always super happy and upbeat which made the journey to and from the hospital so much more bearable. They became our friends and a big part of our support network.

There was also a rather colourful character who only drove us once. I don't recall his name, but both Julia and I remember him well. He used to call me Verlucci, making me sound like a fashion brand, and he was not afraid to tell everyone that he was an avid Trump supporter. He used to swear to himself and others, including passengers, and it got so bad at one point that Julia asked him to stop and chose to hail a cab for the rest of our trip.

Having free courtesy transportation to and from the hospital for all treatments means there's one less thing to worry about. Although the wait times for pickups at the hospital were sometimes a little excessive, ZUNI always got us where we needed to be and on time.

* * * * *

The side effects of Irinotecan were very different when compared to the ones caused by the more aggressive Oxaliplatin: I experienced diarrhoea and hair loss mainly, and the 5-FU pump made me feel nauseous more than anything. The funny thing was that on infusion days, as well as a day later, I didn't actually feel any different. But on pump disconnection days, usually on Fridays, I'd feel the side effects kicking in. Cancer feels pretty harmless in comparison. The treatments, on the other hand, make you feel like death warmed up.

I guess it takes a few days for the drugs to start wreaking havoc with your cells. Lucky for me, by the time the weekend was over, I was in relatively good shape again - perfect timing to fit in with that daily radiation treatment.

Chemo treatment days felt long at Mount Sinai, although the setup was more efficient when compared to Baptist Hospital. This was due to the fact that at Mount Sinai, my blood was evaluated on the same day as the treatment was scheduled.

We'd go in, blood was taken and the lab would go to work. Then we'd see Dr. Cusnir, who would give the go-ahead for the treatment if the blood work looked OK, and within half an hour, said treatment would be administered.

This certainly cut down the amount of hospital visits, from three days every other week to only two days. Every cancer patient on chemotherapy appreciates having to travel less rather than more often.

* * * * *

Over the course of two months, both the radiation treatment and the FOLFIRI infusions managed to shrink my scary tumour by 50%. The initial CT scan at Mount Sinai showed it to be 12cm in size when we started. Considering Dr. Szomstein had completely removed it, and that I was on FOLFOX, the tumour had managed to grow significantly since this time.

After my first two months at Mount Sinai, the tumour had diminished to 6cm, making it half the size it used to be. That was great news, and it looked like my treatment was working.

However, the daily radiation seemed to be taking its toll on my wellbeing. I started to feel very tired after each treatment. But because it was painless when administered, it took me a while to make the connection between feeling tired in the afternoon and having received a dose of radiation.

In addition, the skin around my abdomen started becoming very red, as if I had a localised sunburn as a belt around my belly button. It wasn't painful, it just looked slightly scary. I also experienced pubic and belly hair loss, again nothing that would be of any consequence.

What was becoming increasingly uncomfortable were trips to the bathroom for urination: although the bleeding had completely stopped and wasn't coming back, it now felt like I had a major urinary tract infection.

When I mentioned all these symptoms to Dr. Kuritzky, he said this was quite normal and was to be expected. What I was experiencing was known as radiation cystitis, an annoying side effect of receiving radiation to parts of the bladder. It wasn't an infection, but the bladder tissue and urethra was burnt and irritated on the inside, just like the skin on the outside of my body. As such, I'd feel major burning during urination.

The answer was a magic medication known as Pyridium, also known as Phenazopyridine. This is a numbing agent attached to an orange dye. When taken, your urine turns a very dark yellow, sometimes orange or even red. It doesn't cure the actual symptoms, but certainly masks the pain until the treatment was finished - at which point the tissue would naturally recover and the pain would eventually subside. Pyridium is also sold as AZO in the US as an over-the-counter medicine.

* * * * *

Another side effect of the radiation treatment was abdominal pain, mostly when shifting positions while I was in bed. When I rolled from one side to another, it felt like I had major cramps, and it took a minute or two for them to subside when I rolled from left to right.

The most comfortable position when lying down was in fact on my back, but that position wasn't good for me because it made me snore and would occasionally induce sleep apnea. What is a boy to do?

Dr. Kuritzky speculated that it was time to re-scan me and adjust my daily dose of radiation. Due to the amount of tumour shrinkage, he believed that the radiation was probably hitting some parts of my small intestine, which would cause the discomfort I was experiencing.

It sounded like a very plausible explanation. Sadly we never got around to doing that re-scan because a mere few days after our chat, I started exhibiting another symptom that had to do with tumour shrinkage: the arrival of my first fistula.

First Fistula

A fistula is an abnormal connection between two hollow spaces. Those could be blood vessels, organs or other pipes in your body. This is often caused by injuries or surgeries, but fistulas can also start growing as a result of an infection or inflammation.

I first heard of the term fistula from Dr. Gaviria, my infectious disease doctor whom I met in 2015. He explained that sometimes, when an area is inflamed, the body simply fuses two bits together that are next to each other. Sometimes this would sort itself out without any intervention, but more often than not, a sharp scalpel is needed to separate said bits.

Shortly after I had started taking the Pyridium that I was prescribed by Dr. Kuritzky, I noticed that I was excreting an increasing amount of liquid from my disconnected rectum. That was a bit weird, because thanks to my colostomy, I hadn't used my rectum in a while. At the same time, I noticed that I was urinating less.

One of the side effects of Pyridium was that urine production could be impaired. The description read that if a patient starts urinating less, they should immediately stop taking the medication and see a doctor. Lucky for me I had plenty of doctors on tap, so I made an appointment with Dr. Kuritzky as soon as possible to tell him about my latest bodily discovery.

By the time we got together, it had already become obvious that my decreased urination and my increased rectal water output was directly related: my bladder was now connected to my rectum. Essentially, I was peeing from my arse and no longer from my knob. What a scary thought indeed! He explained that the radiation had shrunk the tumour so fast and had worked so well, it had left a hole.

Since neither Dr. Kuritzky nor I knew how stable the fistula was going to be, we thought the best course of action was to go straight to Mount Sinai ER and have a team of specialists take care of the situation.

* * * * *

Any Emergency Room is scary, and the one at Mount Sinai is no exception. Although it was interesting to see an entirely different setup compared to "our usual ER" at Baptist Hospital, it was also slightly scary to be lying there (again) with yet another shocking turn of events as a result of my cancer treatment.

The first step in the ER journey was a friendly triage nurse who took my vitals. I explained my symptoms in a slight panic, and she did her best to put me at ease and explained that the doctors would take care of me very quickly. The good news was that we didn't have to wait longer than perhaps 5 minutes before I was wheeled into my own room.

Half an hour later, I found myself explaining my situation again, this time to a young doctor. His job was to assess how urgent I needed treatment, and to relay what I had said in "amateur speak" to a slightly more senior ER doctor. Sadly that guy was much more stressed out and unfriendly, and not really a pleasure to deal with.

After first giving me a hard time for being British, he gave me an even harder time when he found out that I was actually German. Thanks, Doc! Never mind my screwed up condition. Let's focus on the important things instead.

He half-jokingly explained that he was French, and apparently our two countries have a history of not liking each other very much. It's at times like these that I loath the question "where are you from". As this example perfectly illustrates, it's just not the best conversation starter in the Here and Now.

As soon as he got over it (which did take a moment or two), Dr. Xenophobia explained to us that a urologist and a colon surgeon would be checking in with me soon, and that in the meantime a nurse would place a catheter into my radiation inflamed urethra.

Would the fun and pleasure never stop, I wondered.

Turns out that it would not. Even with the Pyridium in my body, and despite the hefty dose of Lidocaine the nurse had applied, a 16 French catheter doesn't go in without extreme pain when you've had close to 30 radiation treatments on your bladder. Oucheroo!

And once the pain of the initial placement subsides just a tiny amount, every minor movement you make with your abdomen is registered as a 7 or 8 on the pain scale. Add to that my very recent and traumatic "catheter in ER" experience with the blood clots and bladder spasms, this didn't spell out the beginnings of a beautiful friendship.

* * * * *

Sadly Dr. Caso wasn't on call, but one of his partners from the same office was, namely a very friendly man called Dr. Polackwich. We met him and a team of young students an hour or so later, still in ER. Dr. Polackwich was a very friendly man, he seemed kindhearted and calm, and he explained that the catheter would at least ensure that the fistula would no longer be flushed. He told us that there might even be a small chance that it would heal without surgical intervention.

A small glimmer of hope started to come back into what appeared to look like another hopeless situation.

Shortly after, we met a similar team of people from the colorectal department. This time however it looked like just a bunch of students without the supervision of a senior doctor.

While I don't mind students during examinations, the lack of direction didn't exactly put Julia or me at ease - especially when I found myself "digitally examined" without prior warning. Note to all junior doctors: at least let the patient know what you're going to do with that finger.

Much later in the day, we were cleared to leave ER and were seen to an inpatient room. In contrast to Baptist Hospital, we didn't get a single room at Mount Sinai. In fact it appeared that all rooms on our floor were twin rooms, and I remember we got a space by the window with a magnificent view over Biscayne Bay.

By the door at the other end of the room was a gentlemen who was watching TV while waiting to be discharged. He was complaining to everyone who would listen about the fact that his oxygen bottle was too big for him to transport.

Compared to British and German hospitals, a large twin room like this still offers a lot more privacy than spending time with three to seven other people in a room of the same size. Be that as it may, anything other than a single room is additional stress you seriously could do without, especially if you're not sure if and how your life will continue. Lucky for us, our neighbour was soon gone and we had the whole room to ourselves.

* * * * *

I guess the doctors didn't really know what to do with me in my condition. Was this new fistula of mine stable, and would it simply hold without further intervention? Or would it get bigger and lead to inevitable internal disaster that would have my bladder spring a leak and fill my abdominal cavity with urine?

Ideally we were waiting for three departments to speak to each other: the urologists were to discuss with the colorectal surgeons if an emergency surgery was going to be necessary, and these two departments were to communicate this to the attending hospital physician.

Prophylactically I was put on Zosyn, a strong intravenous antibiotic, and I was not allowed to eat or drink anything after midnight - just in case a surgery procedure was going ahead the next day.

It was close to midnight, and I remember being extremely hungry, so Julia managed to grab some supplies from a little cafe downstairs in the hospital consisting of a juice and some Pringles that I managed to scoff down just before the stroke of 12am. I also remember this leading to some mild diarrhoea only minutes later. That's a lot less fun than it sounds when you're in a hospital bed with a new catheter and a colostomy attached.

* * * * *

So many thoughts and questions were going through my mind. What was surgery at Mount Sinai going to be like, especially without my favourite colon surgeon Dr. Szomstein? What a shame that he wasn't going to be able to work together with my favourite new urologist, Dr. Caso. They were both employed by different hospitals, which meant they'd never be able to work together.

But since there wasn't a suitable urologist at Baptist, which colon surgeon in turn would I get here at Mount Sinai, and what would he be like? And what was the food going to be like? Would I even be allowed any food during my stay here? Would they leave my bladder intact, or would I end up with both a colostomy and a permanent urostomy when I wake up tomorrow?

Thoughts can drive you crazy sometimes. As with most things in life, there simply is no answer. If there only was a switch I could flick to turn off that brain temporarily.

The night passed away minute upon minute. Neither Julia nor I got a lot of sleep. Finally one of the attending colorectal surgeons came by to see us in the early hours of the morning. He was a young doctor in residence and said that my case is still being discussed by people with a higher pay grade.

He also said that should it come to a surgery, in cases like mine, the surgeons would often perform what's known as a "prophylactic colectomy". When I asked him what that meant, he explained that in patients who are more or less lost causes (such as me), they like to remove the whole colon to prevent cancer from coming back.

Yeah thanks dude, I thought, not exactly what I needed to hear in that current situation. Glad he wasn't in charge of making decisions about my case. Patient satisfaction and bedside manners: nil out of 5 stars.

Thankfully Dr. Muddasani came to see us a little later. She was the "real" senior colorectal surgeon, a mild mannered Indian lady with a lovely smile on her face. She told us that she had spoken with the urologists, and they all agreed that thanks to my catheter, there was an unlikely chance of an imminent catastrophe in my abdominal cavity.

She suspected that the fistula was going to be stable and, just like Dr. Polackwich suggested, might even heal by itself. To improve those chances, the catheter was to remain in place for a while, so that the connection was left alone and not regularly flush itself with urine

Although a chat with a urologist would have been nice, it was not to be while I was an inpatient. I was going to have to see Dr. Caso in his office instead.

* * * * *

A day later I was discharged and my life and chemotherapy treatment continued as usual. The only difference was that I was wearing a catheter again. It made my life ever so slightly more uncomfortable. I don't mind telling you, travelling with two plastic bags attached at all times really makes you appreciate how amazing life is without such things.

Occasionally I was going to urinate from my rectum, but most of the time, the catheter took care of relieving me. Looking after bodily functions was now taking up most of my day. This new hobby kept my wits in check and my mood somewhere close to the ground floor.

* * * * *

Around the same time, July or August 2017 it was, I started to develop a strange looking bulge around the site of my stoma. My colostomy itself or my digestive functions remained the same, but my tummy looked a little lopsided. It was as if there was some weird relatively hard thing trying to escape from my lower left abdominal area, about the size of a cricket ball.

This phenomenon was called a peristomal hernia, also known as parastomal hernia.

Dr. Szomstein explained it to me: when the surgeon creates the opening (stoma) for a colostomy or ileostomy, the rectus abdominus muscle is split. Over time however, this hole can expand slightly, and some of our small intestine can push through the hole. This leads to a parastomal hernia.

A similar thing happens with a regular hernia, the only difference here is that parts of the abdominal muscles are too weak and split involuntarily, without the help of a skilled surgeon's scalpel. The end result is pretty much the same though: some part of our pressurised GI tract pushes out where it shouldn't be.

Usually surgeons leave such conditions alone until there is a major problem, and hernias are very often just plain ugly, but not painful. However, if too much of your GI tract pushes out, your intestines can get strangled, and that can lead to excruciating pain. So it's best to keep an eye on how those hernias behave.

Mine just kept growing bit by bit, but thankfully without pain. I had visions of imminent disaster at some point in the future though. Whenever I brought such worries up with Dr. Szomstein, he would tell me that when we reverse the colostomy, he would take care of the hernia too. He assured me it would be a very easy task for him.

The Nutritionist

My relationship with food wasn't always based on friendship. It may sound weird when I say it like this, but food wasn't always my friend. I used to overindulge, I used to weigh in excess of 260lb, and very rarely did I think about what or how much of it I was eating. I guess as long as there is no urgent problem, many of us think that way.

My wife on the other hand has always been an intuitively good eater. I used to call her a "fussy eater", because not only does it take Julia much longer than anyone else to eat her food; she is also very choosy about what she eats and how much of it she gives to her body.

Turns out this behaviour is actually a rare talent. For example, Julia only very rarely if ever overeats. Her body just won't let her do that. Likewise, anything that could be seen as "too risky to eat", she simply won't touch. Milk that's on the edge of turning into something else, cheese or bread with anything that could look like a touch of mould, meat that's been in the fridge for a day longer than it perhaps should have been, in short, anything that may not be 100% as good as it should be, Julia won't touch.

I on the other hand used to eat anything and everything. No matter how long something has been in the fridge, as long as it doesn't walk out by itself, I would assume it's OK to eat. It's the Homer Simpson school of eating.

While my body would digest most of it without any issues, there were times when I wish I hadn't ingested certain things or certain quantities of things.

Mind you, all that changed when I developed my intestinal issues back in the summer of 2015. I knew something wasn't right with my GI tract, and I was forced to take a much closer look at what I could ingest and what would cause me serious issues.

My original tumour was basically a giant blockage in my colon. So immediately after a meal this would not present an issue - however a few hours later, as food was being processed further down in the GI tract, I would regularly get some abdominal discomfort or even pain. Often I would have to lie down until food would pass that blockage.

The easiest option for me at that point was to eat less, or only eat food without much fibre. Sometimes I chose to eat nothing at all, or simply go on what I now know to be a clear liquid diet.

Before 2015 I used to refer to it as a "vacation for my colon", because the only signal I got from my body was that my GI tract needed a rest. I just didn't know why or what the cause of it was until much later.

After my original surgery in February 2016, when I woke up with a colostomy as part of the procedure, I was told that there was a nutritionist in the hospital whom I could speak to if I wanted to. I don't recall ever meeting one at Baptist Hospital, but in their defence, I never insisted on speaking to one either - perhaps my mind was occupied with other things (like survival).

Many months later it occurred to me that living with a colostomy potentially means a huge change in my diet, and as such, having even the briefest chat with a nutritionist would have probably been a healthy idea. In hindsight, speaking to a nutritionist should have been a mandatory procedure, much like meeting an ostomy nurse. I don't know why this meeting never took place.

* * * * *

When I started my chemotherapy treatment at Mount Sinai however, I did meet a nutritionist - and this meeting more than made up for the delay. Turns out that starting chemo treatment at the Mount Sinai Comprehensive Cancer Centre is indeed a mandatory procedure, just like it should be. I can't emphasise how important that was for me.

My nutritionist was Julie Rothenberg, a very knowledgable woman in her late twenties, who told me that from an early age, her passion in life had always been to become nutritionist. We used to speak almost every time I had a session in the infusion suite, from my early chemo dates in June 2016, to my later immunotherapy infusions in the fall of 2017.

As my body was changing, so was the relationship I had with food.

It started with a diffuse awareness of the consequences that solid food had on my body. This was before I had my first surgery. When the original tumour was taken care of, and when I started living with my colostomy, I could eat almost anything. I was advised to stay well hydrated and stay away from food that contained undigestible sharp edges (such as popcorn), as it could damage my stoma.

Although a stoma doesn't have any nerve endings, sharp edged fibre might cause bleeding and therefore lead to infections. I made sure I examined everything I ate very carefully from then on, as I would have a much closer visual relationship with what comes out at the other end.

As time went on, I was beginning to think more about what I was eating, and how much I was eating. I was beginning to listen more closely to my body as to what made him feel good and what made him feel perhaps not so good. I was beginning to feel a separation between "me" and "my body", as if the two units were two separate entities. This was an interesting discovery for me and it's something that to this day holds a mysterious fascination for me.

I'll elaborate more on my relationship with food and my complicated history with it in a later chapter.

* * * * *

One of the things I remember about Julie were her monthly Lunch and Learn workshops, specifically designed for cancer patients. These relaxed and open group meetings gave us valuable tips around how and what to eat while undergoing treatment. We even got a free lunch out of it. What's not to like?

The most important tip among the many things we've discussed was that it's vital to eat when you feel like it, and eat as much as you can while you’re undergoing treatment. As I said before, cancer is fickle. One day you'll feel on top of the world(ish), while the next day things look very different. And those wellbeing changes can happen within a matter of hours.

For food, this means that when you feel hungry, you may only have a limited window of opportunity before your body decides he can't take anything in anymore. While that's usually not a problem when you're otherwise healthy, it can make a big difference when you're getting poisonous drugs delivered into your blood stream.

Sometimes during my chemo treatment, I didn't feel like eating for two or three days in a row. It's good to have a few fat reserves for such eventualities. Lucky for me I had plenty when my treatment started, but over time those inevitably got depleted.

I used to joke with other overweight patients and friends that fat people, within reason, seriously have the upper hand when it comes to good chances of survival. That's true for elongated hospital stays, where the doctors often put patients on NPO (the Latin abbreviation for "nil by mouth") to assure a complete bowel rest. But it's also convenient to have extra pounds in preparation for drug infusions that wreak havoc with your GI tract.

While we all aspire to be thin as rakes, a little extra padding here or there in those difficult times is actually beneficial, even if it pushes your BMI into the "overweight" category.

Fun Fact: The principle of the Body Mass Index, also known as the Quetelet Index, goes all the way back to Victorian times. It is calculated by dividing your weight (in kilograms) by your height (in meters), multiplied by a factor of two. It was never designed to make us all feel fat, although it did a terrific job doing so.

The modern term BMI was first coined by the American physiologist Ancel Keys in 1972 as a way to measure and document the increasing obesity of Western countries. He admitted at the time that even though this particular index was "... not fully satisfactory, at least [it is] as good as any other relative weight index as an indicator of relative obesity".

It was fascinating to see how quickly such fat reserves are depleted. Julie explained it to me like this: one pound of body fat is worth about 3500 calories. This means that even when we sit in a chair doing nothing, it'll only take a little under two days to lose one pound of body weight. If we consume very few or literally no external calories at all, we may be losing up to as much as four pounds per week.

What we're losing is not just fat either. Our bodies need protein too, and in times of survival they will quite happily digest and reduce muscle tissue. Sadly this doesn't make us look like supermodels, and instead gives us that emaciated "concentration camp survivor" look.

I'm a 6ft tall guy, and I find that a good weight for me is somewhere between 180 and 200 lb (that's roughly 80-90kg). According to my BMI, this would still make me overweight, but since it's a flawed system anyway, I don't really care about that.

During my chemo treatment, my weight went down to 165 lb (75kg), which is not that far away from my alleged “ideal” body weight. However, as light as this weight change was, it made a huge difference to my wellbeing (or shall I say un-wellbeing). I remember my wife frequently commenting how bony I looked, and I quite agreed with her.

I began to notice the effects of hard seats a lot more than I ever had before. Those tough plastic seats on the bus, or trendy wooden chairs in coffee shops, they were not that easy for me to endure anymore. In fact it was downright painful to sit down without a pillow underneath my arse.

Temperature was another thing that started to have an effect on me. Public buildings in Florida tend to get a little carried away with cranking up the air conditioning to an "uncomfortably cold" setting. With more body weight and a little extra padding, I used to be able to hang in there until I left such a location. But weakened by the chemotherapy, and with less body weight, I couldn't live without a fleece jacket or sweater. I had been robbed of the insulation I was used to.

Only a small weight change of 10 pounds made the difference. Lucky for me that I had those reserves! I kept thinking of the poor patients who didn't have such a buffer, and how much they must be suffering. Not only were they skinny to begin with, so the "hard-seats issue" was probably something they experienced on any regular day. But rob them of an additional five or ten pounds, and they're in serious trouble extremely quickly.

I remember meeting another patient in the infusion suite, an old hispanic lady in her late sixties. The poor thing was all skin and bones. Her kids had just forbidden her to drive because they were of the opinion that she was too weak for such escapades, something she vehemently denied of course.

I don't remember her name, but she showed us pictures of herself from a time before she started her treatment. You wouldn't call her overweight, but she looked like a regular old lady back in those days.

Her issue was that her body couldn't metabolise many of the nutrients she needed, and as a result she kept losing more weight than was healthy for her. The doctors had given her a feeding tube so that she could ingest specialised food directly into her stomach. But it didn't work very well. She told us that even with five to eight high-calorie protein drinks per day, she couldn't put the pounds back on, and she could barely hold on to the weight she still had.

What a terrifying thought indeed.

Lack of food, or the inability for the human body to metabolise food can quickly turn into a silent killer. It doesn't instantly assassinate you, but lack of nutrients has severe consequences on recovery from poisonous drugs and surgery.

Just like with so many puzzles, there are solutions you can discuss with a good nutritionist. Julie had some very simple yet practical tips on how to deal with making sure the body had adequate nutrition in times of crisis.

I remember there was a patient who used to work for Apple in the hardware department. He used to repair devices and had just had surgery for a large tumour in his oesophagus. As such, he could not speak very well during the recovery. But more importantly, he couldn't swallow solid food anymore.

We can't live well enough on liquids alone, so Julie suggested that he liquidise things in a kitchen blender. That machine had become his new best friend, allowing him to keep a relatively regular diet. The only difference was that he no longer chewed his food.

He came up with the most amazing recipes too. And although he admitted that it took a bit of getting used to this new way of eating liquidised food exclusively, he looked very healthy and had recovered well from his recent surgery. That's important to remember. Plus, his liquidised diet wasn't going to last forever. He was already on his way to full recovery when we met. Also important to remember: crisis doesn't last forever!

* * * * *

Another great tip from Julie was how to ingest high energy food as efficiently as possible (and I'm a sucker for efficiency). In essence, the idea is to focus on foods that are usually to be avoided in a regular diet, or at least should be eaten in small quantities.

For example, to increase calorie intake, we can add casual to liberal amounts of things like olive oil and peanut butter to anything we eat. Or, if dairy is tolerated, we can add liberal amounts of butter - even to coffee (it's known as Bulletproof Coffee). You can also substitute milk for cream or half and half to add additional calories to your diet.

Fun Fact: The term "half and half" usually refers to a popular mix of full-fat milk and single cream. Here in the US and Canada, it's available in every coffee shop, supermarket and drug store in the dairy aisle.

When capitalised as "Half and Half" however, it usually refers to a mixture of beers on both sides of the Atlantic, with Guinness Irish Stout being one of the halves. The beers are drawn into the same pint glass, floating on top of each other as layers.

* * * * *

In times of crisis, rules go out the window. I had never thought I'd ever be in a position where I had to increase my calorie intake to remain well. Calories were always something to be avoided in my life, and something that needed to be curbed if anything. They were never anything to deliberately increase until I started my cancer treatment.

Later on, as my GI tract and food metabolism issues increased, Julie told me about an interesting type of oil I thought I'd mention here. It's called MCT oil and is a popular ingredient in the health and fitness community.

It stands for Medium-Chain Triglycerides, so called due to its shorter atomic structure when compared to many other fatty acids, which have a longer atomic structure (aptly known as LCTs or Long-Chain Triglycerides).

The MCT oil's magical properties lie in the fact that it can be metabolised faster and easier by our bodies.

Other fats need to be modified by bile salts before they can be metabolised and put to good use. This process takes some time, but it also requires additional energy in the form of other readily available calories. It might explain our cravings for sweet dessert after meals that were rich in fat and therefore already high in calories. Our bodies need energy to break down, access and metabolise the energy that's stored in regular fat.

MCT oil on the other hand can be metabolised rapidly, almost as quickly as sugar. That makes it an ideal candidate for patients with GI tract issues, for whom easy and efficient absorption is of capital importance. At the same time, there's no danger of a spike (or crash) in either blood sugar or insulin levels. Everybody wins!

To increase my calorie intake, I used to add a tablespoon of MTC oil to my coffee or to protein shakes. Although a weird experience at first, I liked the effects it had on my wellbeing. It even improved my mental sharpness, taking the edge off the effects that "chemo brain" had on me. I'll elaborate more on that condition in a later chapter.

The stuff is available in health food stores and it's little pricey, but if you're in a similar situation and tolerate it well, I recommend you give it a shot.

* * * * *

Protein is important too, especially after surgery and to avoid the effects of dwindling muscle tissue. But keeping up adequate protein intake is not always easy or even downright impossible when you're on a weird diet. We can take a leaf out of the book of those who are actively trying to build up muscle in a gym at 4am. While such people seek to grow the muscle tissue they have, the same principles apply to those who simply do not want to lose any of it.

Whey protein is the answer. There are tons of flavoured and unflavoured products out there, most of which are powders that can be added to milk, water or smoothies. Some of them even come pre-mixed as drinks.

Julie recommended a product called BiPro, which is based on whey protein. It's one of the few products that does not have added filler materials or excessive carbohydrates, and it comes in several nice flavours. My favourite was Caffe Latte powder, mixed and shaken into 10 ounces of whole milk, and perhaps a tablespoon of MCT oil. It did wonders to give me adequate nutrition and the additional protein I needed to regain some of that lost muscle tissue.

BiPro also comes as Protein Water in several flavours, with each bottle consisting of 20g of protein and no carbohydrates. A strikingly similar product in exactly the same bottle is available from Atkins. It has the same nutritional values, albeit with different flavours.

Not everybody can deal with whey protein though. Technically, whey is a byproduct (or more accurately a waste product) of making cheese. It's the liquid left behind when milk coagulates and is essentially lactose. Hence, lactose intolerant people should stay away from whey protein.

Thankfully there's another supplement based on pea protein, which is not based on lactose and therefore dairy free. It's called Vega. I've tried the chocolate flavour and definitely liked it. One scoop of Vega contains 20g of protein.

I'm sure there are many other brands of pea protein out there. I remember trying a delicious pre-mixed chocolate flavoured product called Ripple. Trust me when I say that peas have never tasted this good!

* * * * *

Speaking of additional nutrition, there are several types of energy drinks available that can come in handy when you can't eat well. These drinks come in small 8oz (237ml) bottles and have huge amounts of calories, perfect for times when it's difficult to digest solid food.

The one made by Nestlé is called Boost and comes in three varieties: regular Boost, Boost Plus and Boost High Protein. The differences are that the Plus version has more calories than the regular version (360 calories for a small bottle), while the High Protein version has - you've guessed it - more protein in it (20g as opposed to 14g in the regular and Plus version).

Abbott Laboratories make a similar product called Ensure, and they too have the three varieties. Ensure is also available in a "clear liquid" version, although I must admit I couldn't bring myself to drink it. Perhaps your taste buds will cooperate better than mine.

In addition to a good balance of fat, protein and sugar, these drinks are also fortified with a variety of vitamins and minerals - so if you can't eat anything, at least try to have a few bottles of this stuff throughout the day. It'll counter malnutrition and keeps you at your best.

Similar products are available as generic drugstore brands.

* * * * *

I'd like to mention one final product that Julie recommended. It helped me a great deal, and had it not been for one of our many chats about the human body, I would have never found out about it.

One annoying side effect of chemo treatment is diarrhoea. It's essentially caused by over active bowel movements, because of which food travels a lot faster than it should. Not only is it uncomfortable (especially if you have a colostomy), but it also means your body doesn't digest many of the nutrients in your food, because it will have left your body before it had a chance to extract all the good stuff.

Avoiding diarrhoea is tricky. There are tips like making sure you eat constipating food, following the BRAT diet or eating food which is low in fibre; but none of these options really combat the root cause, namely the chemotherapy drugs that play nasty games with your gut lining.

A helpful product here is Banatrol Plus. It's made by a happy sounding company called Medtrition, whose slogan is "We help people feel better"(TM). It has helped me greatly reduce and sometimes even completely avoid diarrhoea caused by chemo drugs.

The magic lies in how this stuff works. Banatrol is based on highly soluble fibre, made mostly out of dried banana flakes. They mix in a little pineapple flavour too, and trust me when I say it tastes much better than it looks. One sachet is mixed into a glass of water and ingested either by mouth, or it can be applied directly into a feeding tube.

The effect it has is that loose stools are bound and solidified, and therefore a bout of diarrhoea can be avoided. Banatrol does not mess with your gut motility. That's what medication like Immodium and Lomotil do, by slowing down your bowel movements. Those meds are also known as Loperamide and Dyphenoxilate respectively.

Slowing down your gut movements is the last thing you want to do, trust me! All that happens are abdominal cramps. Such medications have their uses, but unless you have a serious medical condition, I'd stay away from those pills. Besides, less medication is always better than more medication.

I found Banatrol to be another helpful gadget in the chemo toolbox. Since diarrhoea caused by chemotherapy is very predictable, I was able to have a glass of Banatrol ahead of time and work out a schedule that would prevent or at least greatly reduce this nasty side effect.

* * * * *

Did we talk about nausea yet? I guess we didn't, so let's round out this chapter with a couple of other small treats that can work against it, besides the meds your oncologist has already prescribed.

Nausea isn't great. It's just as annoying (and unavoidable) as diarrhoea. Nausea prevents us from ingesting and digesting food. It's not pretty either, so it's something to be avoided for our sanity’s and wellbeing's sake. My doctors have always recommended that if I feel as much as the tiniest bit nauseous, to pop a pill immediately.

Among many other "just in case" pill bottles, I had both Metoclopramide and Prochlorperazine in my cancer travel bag. Being the curious fellow that I am, I may have researched what these things do. Although they do work against nausea as well as migraines, I was ever so slightly shocked to find out that they are both Dopamine receptor antagonists, or in other words, anti-psychotics. Harmless side effects include (but are not limited to) narcolepsy, paranoia, irritability, aggression, dysphoria and depression.

As exciting as these words sound, they were not something that I was particularly looking forward to, and as a result I have never taken any of these pills.

I did experience nausea a few times though, so much so that my brain associated nausea with the snacks that were provided in the infusion suites. For example, one of the many snacks they had was a small blue packet of Planters trail mix, consisting of peanuts, raisins and other dried fruit. It was delicious, and a good boost of fat and protein too.

But because I felt nauseous to the core several times when that snack was around, just looking at a such a packet instantly brings the feeling of nausea back, even outside the infusion suite. In a way I felt like Pavlov's dog!

Thankfully Julia found two products that can help against nausea, and they don't come from a pharmaceutical company either: one product is a selection of hard candy called Queasy Drops, and the other is called Angel Mints.

Queasy Drops are made by a company called Three Lollies. You can get them on Amazon and sometimes at your local drug store. They're individually wrapped boiled sweets made with essential oils. Suck one slowly and - as if by magic - nausea disappears. No chemicals, no potential side effects. Sometimes I needed two for the nauseous feeling to disappear, but they worked without fail every single time. I was relieved to discover that they also worked to combat the occasional nausea I felt from receiving radiation therapy.

I hear that they work great against car sickness too, and apparently they work wonders for pregnant women who battle against morning sickness.

Flavours include cola, raspberry, green tea, banana and ginger. They're only available as a mixture (unless you get in touch with the company directly; I remember reading a review by a very happy customer who did that, because her husband didn't like anything other than the cola flavour).

My favourites were raspberry and banana. I was introduced to them as part of a present Julia got for me when my treatment started. It was a black bag containing a fleece blanket, an empty water bottle, a book called "I'd rather do chemo than clear out the garage", and a plastic box of Queasy Drops. It was a chemotherapy survival kit of sorts, which I've used during every trip to the hospital since.

Queasy Drops also come as lollipops, as Preggie Drops, with a pink label in support of Breast Cancer and probably several other varieties. Did I mention they're made with completely natural ingredients? If you only try one single product from this chapter, try these. They are seriously magic bonbons.

The other sweets that Julia found were Angel Mints. I believe she discovered them in the Baptist Hospital gift shop. They are made right here in Florida, by the Florida Candy Company.

Angel Mints are made of pure crumbly peppermint with no additional nasty ingredients. They're fat free, salt free, soy and gluten free, individually wrapped and they too are a good treat against nausea. The peppermint flavour is very mild, and there is a good amount of sugar in them, but sucking one of these has a very soothing and relaxing effect on the whole GI tract.

Angel Mints were available only with classic mint flavour in 2016, but have since been expanded to contain key lime, cherry, orange and several other flavours. Drug stores and supermarkets stock them, as well as hospital gift shops of course.

You can also get hold of them via the manufacturer's website angelmint.com. You'll even get a tour of the small factory in Clearwater, where these sweets are milled on equipment that's almost 100 years old.

I'm not being paid to recommend any of these products by the way (dang, another missed income opportunity). I've tried them all and found them useful, that's why I'm recommending them here. These products have helped me, so perhaps they may help you too.

Besides, it made all the difference in the world to me to know that solutions to awkward situations do exist. Knowing that there is a solution to a puzzle puts you back in charge.

* * * * *

Julie left Mount Sinai in October 2017 to focus on her private practice, which she had been running in parallel to working at the hospital. While I was sad to see her go, it occurred to me that when I needed her the most, she was there for me, and we met at the perfect time during my treatment.

It occurred to me that this holds true for Julie as well as many other aspects of my journey through hell. Many things appeared out of nowhere and they were there for me when I needed them.

I'm thinking of how I got in touch with Mount Sinai, namely with a single phone call. The first phone call I made that day led to the right people and the rest of the team.

There was also the outpost of the church, set in a tattoo parlour on Miami Beach. It was there when I needed it. Only weeks later, this chapter had been closed. I had made the connection, and now I no longer needed the weekly meetings.

The Starbuck's on 10th and West Avenue is another example. It had been there for years, and I frequently went there to write. In fact, large passages of this book were written at that location. It's been closed since the end of March 2018, which incidentally was the first deadline I had set myself for this book.

When I think about these things, I get the feeling that our paths have crossed for a purpose. To ignite something and get the ball rolling.

Ha. I don't know where that came from. I just thought I'd mention it. Somewhere. This was as good a place as anywhere else in the book.

* * * * *

Julie and I are still in touch, and if you ever need a nutritionist in the greater Miami area, I highly recommend you get in touch with her. She may even consider a remote session if you’re miles away. Go and ask her, she is fantastic! You can book Julie through her website julienergynutrition.com.

Doctors Are People Too

The perception of how the doctor/patient relationship works has changed over the years. Probably in part due to the arrival of the internet, and the ever increasing resources for all of us to check, telling us what certain symptoms mean.

It's a double-edged sword of course: sites like WebMD are no substitute for a good doctor. But they can at least shed light on what things may mean when we experience them. Such patient driven research can be helpful in aiding us to make an appointment with a doctor and have things checked out by a professional.

Here's the thing though: doctors are people too. And as such they are flawed. Like the rest of humanity. None of us are perfect. Fact.

Remember that old Billy Joel song from the eighties, "Second Wind"? It's probably better known by its chorus "Only Human". In it, the protagonist is being told that he too is human, not perfect, and that he's supposed to make mistakes. Being wrong is part of being human and therefore unavoidable.

I'm not having a downer on doctors here, not at all. But what I want to point out is that we are all working better together as a team. And that's very much how I perceived my relationship with the many doctors I have met during my journey. It was ultimately this relationship that played an important role in my survival.

* * * * *

The attitude that we can bring into any type of treatment is very important. I've heard this several times during my trip. It's the way we deal with people and the way we approach those who are happy to help us get through happy and difficult situations alike.

My own attitude towards the crack team of professionals who helped me was always one of team spirit. I thought of beating cancer as something we should do together, with everyone who is involved. In fact, the chemo survival bag that Julia gave me said as much: "Nobody fights alone". It was a great reminder of this fact.

I think it's wrong to show up at a doctor's office, kick back and expect that they single-handedly have the answer. It can't work like this. Likewise, researching symptoms on the internet and sourcing drugs for self-medication without consulting a professional is probably also not the best idea.

The truth lies somewhere in the middle. Do your research, then go see a doctor, and the two of you together can make a decision as to what should happen next. That's how I did it, and it worked great. The doctors recommended a treatment and made suggestions, but ultimately it was I who agreed to it.

* * * * *

Don't forget that: you have the final say in any medication that's administered, whether it's a simple prescription you're supposed to take, or packet of Kerflonkzenschlonz a nurse in hospital is about to give you intravenously. You decide if you want it or not.

Often times, what the doctors prescribe will be the right thing for you to take. But there are times when they simply cannot know all the facts.

Let's face it: you've been living with your own body ever since you were born, and as such you know that vehicle a lot better than any doctor ever could.

The advantage a doctor brings to the table is several decades worth of study and practice in the medical profession, ideally some intuition and good interpersonal skills, and of course his prescription pad.

Put those two things together (i.e. you and the doctor) and you should be able to make the perfect team, ready to fix a problem.

* * * * *

This ideal scenario can only work though if both of you think the same way. If either one of you is of another opinion, it's just not going to work out. It's like any good relationship.

If you notice such a point, it's probably best to find a different doctor. I had to do this myself at times. It's healthy and nothing to feel bad about. We just don't gel with everybody. But if such a relationship works, it feels like you're in the flow, and your condition will start to improve.

I've heard several examples from friends who had the same experience. Teamwork with doctors is key to getting better, no matter if you have cancer or something much more harmless.

My friend Oliver had a weird thing going with his fingernail when he was in his early thirties. It had started as a slightly white discolouration at first, perhaps a little ugly, but nothing that suggested danger.

But when that harmless discolouration started to spread to other fingers, and the colour changed to black, he was getting worried.

When he saw his general doctor, he was prescribed a simple anti-fungal cream. The doctor had diagnosed it based on symptoms that could have easily been mistaken for fungus. A blood test didn't show anything unusual either, so it appeared to be a logical diagnosis.

But the fungus cream didn't work. Quite the opposite. Oliver's condition worsened, and the cream seemingly did nothing.

Still worried, Oliver mentioned his symptoms to his family. When his Dad heard about it, he told him that it may potentially be Psoriasis, an auto-immune disease that's been running in his family for generations. His Dad and several other members of his family had similar symptoms, as well as scaly patches of skin dotted around their body.

When Oliver mentioned this fact to his doctor, he was ever so slightly shocked when the man told him that Psoriasis has not been diagnosed, and that he should continue with the fungal cream.

That's rather sad, isn't it? The patient brings valuable insight into a family condition to the medical professional, who could have taken this into consideration and adjusted the treatment. At least he could have been open to the fact that he was wrong. A good doctor would certainly have done that. It's an exotic condition, believed to be genetic in nature, and diagnosing it isn't easy. Why not accept his patient's help?

Dissatisfied with the service he was receiving, Oliver consulted another doctor who listened. He prescribed regular treatments of a specialised full body soak at a private clinic. The treatment is seemingly working, but more importantly, the patient now feels a lot better about what's happening with him.

Doctor and patient were working together as a team and found a solution. Oliver didn't know what treatment was available, but he could provide valuable insight to help the doctor do a better job.

The doctor on the other hand may not have known about his genetic disposition to Psoriasis, may not have even known about it, had Oliver not mentioned his family history. Now he had that information, he could devise a treatment that worked.

* * * * *

Oliver's brother Michael, a family man with two kids, had a similar experience. He started to notice weird symptoms like swelling in one leg and occasional cramps in his calf muscle. He went to see his doctor, who initially diagnosed this as a potentially mild type of muscle strain. A bit of rest and a cold wrap should have taken care of the issue.

That didn't work. Michael's symptoms did not shift, so he decided to do a little internet research. Turns out that these are classic symptoms of Deep Vain Thrombosis, a potentially deadly blood clot somewhere in the blood stream that's obstructing a vein.

The doctor did not diagnose this initially, because Michael doesn't fit the criteria of patients who are prone to getting Thrombosis. Michael is a picture of good health, he is slim, has never smoked, is fit as a fiddle, has not had any recent injuries, is not overweight and exercises regularly.

Worried by what he had read, Michael went back to his doctor and relayed his suspicion. Not being a medical professional, yet eager to find out if there was any substance to his theory, he asked if the doctor could run a test, and what it would entail.

Being the good physician that he was, Michael's doctor prescribed an ultrasonic procedure that would show up any clogged arteries. I remember having had a similar test at Baptist Hospital, after my bladder tumour had been resected. The doctors were worried that due to my elongated stationary position, and the presence of too many blood clots in my bladder, coagulated debris may have moved to another part of my body. Lucky for me, that was not the case.

The same procedure showed a blood clot in Michael's leg, and he was lucky that such a test was performed. He was given adequate treatment to dissolve the clot, and eventually his symptoms went away.

When he spoke to his doctor again, Michael was told that had it not been for his own initiative of requesting this test, the clot may not have been diagnosed with ample time for treatment, resulting in much graver issues.

Once again, doctor and patient working together have resulted in success. Had Michael simply relied on the doctor's initial diagnosis, the clot may have moved to his brain causing all kinds of havoc. But he showed initiative, and a healthy interest in his own wellbeing.

Michael had a good doctor, who was able to listen and take his patient's research into account. The correct test avoided potential disaster.

* * * * *

Julia's friend Annie had reason to believe that she had a small hole in her heart. Annie mentioned this to her doctor, citing the various symptoms that led her to this assumption, but her concerns were dismissed.

That's never easy to hear as a patient. It makes you feel like the stupid layman that you are. Who could argue with the expertise of a trusted doctor? What do we know as patients?

Well, we might not have the medical degree, but we know our bodies. We live with them every second of every day. Even if we can't properly express whatever 16-syllable word a condition is pronounced as, we can tell when "everything is awesome" and when it's not.

In Annie's case, the doctor was surprised when the tests came back positive for a hole in the heart. It's known as a Congenital Heart Defect, a structural problem that affects around 48 million humans on this planet, leading to about 300,000 deaths every year.

The good news is that it's curable, if diagnosed properly and early enough for adequate treatment.

Begrudgingly, Annie's doctor ordered a test and - surprise surprise - her suspicions were confirmed. It was a win/win for both the patient and the doctor: Annie could get the right treatment and the doctor learnt to trust his patients more.

But it was the right attitude on both sides that won the day: Annie's own persistent research and gut feeling, and her strength to insist that something wasn't right with her. The right patient, combined with the right doctor who was happy to listen and think outside the box. It takes courage to do that, on both accounts.

* * * * *

What I'm saying here is the same as the heartwarming message that the LEGO Movie brings across: "Everything is cool when you're part of a team". And just as true for the relationship between a patient and a doctor, or a patient and a nurse. It's true for every relationship.

In fact, I'd like to go as far as suggesting that it is our own responsibility as patients to bring important facts into the treatment. Likewise, if we have doubts about a treatment, tell the doctor. Perhaps there are alternatives.

There's been ample research into the Placebo Effect. It suggests that our own perception plays a large role in the effectiveness of a treatment. It suggests that even if we're given inert ingredients, our belief in the fact that such placebos may work makes us feel better.

I'm thinking of the power of the mind here. Imagine the implications of a prescribed treatment that you disagree with. Imagine you get a pill and you have your doubts about it ever curing you.

Taking the placebo research into account, it stands to reason that such a treatment - even if it was a genuine medication for your condition - might not work as well as a treatment that you fully agree with. It makes perfect sense to me.

I don't know about you, but I'd rather receive medication that I fully agree with and reap the good effects that my brain can add to the mix. If I get something that I have researched, something that's worked for people in a similar situation, something that I can believe in, it will probably have a better effect on my wellbeing than something I disagree with.

And it all starts with the team effort we can both bring to the table: the patient, and the doctor, together as a team.

If you're not sure about a treatment, pepper the doctor with questions. Do your own research. Be honest. Don't hold back. Tell them more than they want to hear, let them be the judge of what's important and what isn't. Suggest medications and tests you've heard about. Discuss and brainstorm together.

If you feel like you're landing on deaf ears, try again. Speak with a nurse practitioner if available. If all else fails, change the doctor. Your wellbeing is on the line.

But don't be too hard on your doctors or your nurses. They're people too. They can make mistakes, just like you and me.

* * * * *

I know, I know... it's controversial, yet inspirational. It worked for me. This attitude has helped me a lot throughout my cancer journey, and it continues to be a good approach of my continued wellbeing.

Cystoscopy 3.0

My FOLFIRI chemotherapy treatment continued throughout the remaining months of the year, interspersed with the occasional CT and PET scan. The side effects were increasing with some serious hair loss and diarrhoea, both of which were expected and accumulative: the longer the treatment progresses, the heavier the side effects are.

Although annoying, the hair loss didn't bother me much. I had frequently met patients who chose to shave their heads. Being a guy, and having had relatively short hair anyway, I decided to join them.

Before I was a cancer patient, I never really understood why people shaved their heads though. Why not keep what you have left on your scalp, no matter how thinned-out it may be? Who cares about looks when you're fighting for survival?

Now I know. Having been through it myself, the answer is actually very simple: rapidly losing vast amounts of hair in clumps is just plain annoying and inconvenient.

It's not an issue when you wake up in the morning and find a pillow full of hair. Or if you're in the shower, massaging a good dollop of shampoo into your scalp, and then finding your hands covered with hair. Those are perhaps shocking moments that drive the seriousness of your situation home with the strength of a baseball bat, but it's not annoying.

Annoying is when you're having a meal, and the next thing you know is that your food is seasoned with hundreds of hairs from your head. Or when you find dozens of hairs in your coffee. Although I was lacking an appendix, I didn't think that ingesting my own body hair was something I should try - no matter how much cats like it, I just can't imagine it being healthy for humans.

Those are the reasons why people elect to cut their hair either extremely short, or voluntarily shave it all off.

Besides being a clean solution to an otherwise messy situation, I also felt that shaving my head put me in charge of my own fate, instead of the chemotherapy. It always feels better to be in charge of a situation rather than being the helpless victim. It does wonders to your wellbeing, trust me.

* * * * *

By the end of 2016, it became clear to Dr. Cusnir that we had done everything that we could with the FOLFIRI treatment. Although the tumour didn't seem to increase in size, it also didn't decrease any further. It remained at the 6cm mark that it had shrunk to - mostly thanks to the radiation treatment.

Hence, in early December 2016, Dr. Cusnir and I decided that the rest should be removed with good old fashioned surgery.

The thing with any chemotherapy treatment is that before a surgical procedure can commence, the patient needs to have a chemo break of at least four to six weeks. This is to give the body a rest from the poisonous and heavy drugs, so that it has a chance to at least partially repair itself. The immune system is severely weakened after chemo, and it needs to be in relatively good shape to make sure the patient can recover well from surgery.

The upcoming Christmas period was the perfect time to wean me off FOLFIRI. After 12 infusions of that stuff, not to mention the 8 cocktails of FOLFOX I had prior to that, I was more than grateful for the break. We set a tentative surgery date for sometime in early 2017, pending further observations. Perhaps January or February.

I had an upcoming appointment with Dr. Caso in his office at Mount Sinai and on this occasion told him about Dr. Cusnir's plan. We were not clear at this point to what extent my bladder would survive, but it was certain that Dr. Caso was going to be involved in the upcoming procedure, no matter how bad the outcome was going to be.

To get a better idea of what he might expect during the surgery, he suggested a cystoscopy in his office. He made it sound like it wasn't going to be a big deal, and I'm sure for someone who performs cystoscopies regularly, it probably isn't. But because my previous two cystoscopies were performed while I was under complete anaesthesia, I could not recall how uncomfortable that may have been.

"Don't worry", he told me, "it's just like placing a catheter" - which wasn't something I remember being particularly pleasant, especially with my bladder being on the fritz. Keep in mind that by this time, I had been living with a permanent catheter for the last four months.

Thinking of the good old fashioned British Stiff Upper Lip attitude again, I tried my best to relax as he inserted his magic cystoscope into my urethra. Much like during a catheter placement, he squeezed in a generous amount of Lidocaine gel first, with a urologist's trademark of a massive syringe.

The cystoscope was a long thin black tube, perhaps as wide as a 16 French catheter, attached to a bottle of saline solution above my head to provide regular lubrication. The more important thing a cystoscope allows the urologist to do is to see live pictures from the inside of my bladder.

There are two versions of a cystoscope: a rigid metal one with a light and an optical viewfinder, which works a little bit like a good old fashioned stills camera. It's used in operating theatres and allows urologists to insert instruments through the cystoscope to perform all kinds of interesting jobs while they're in there.

Another version is flexible and purely meant for quick examinations, which is the type that Dr. Caso was using in me. This one has a small camera at the front, making live pictures appear on a small monitor and potentially stream them directly onto YouTube (we decided not to do that though).

I remember Simon telling me about such a procedure many years before, during which he too was fully conscious. I also remember that we never finished our chat as to how he felt during the procedure. I was going to find out first hand for myself how a cystoscope would feel like.

Now I know. Can I see a show of hands please, anyone in the auditorium who thinks this a pleasant experience?

Anybody?

You were all correct, it's NOT a pleasant experience. Granted, with a healthy bladder and a healthy urethra it might not be a big deal. It'll probably be a little uncomfortable, but not downright excruciating as it was for me. Given my condition at the time, I guess it makes sense that it didn't feel like a picnic. I blame the cancer, not the operator.

Dr. Caso took some time talking us through what we saw on the monitor, while his magic cystoscope travelled inside me. I only got glimpses every so often, but Julia had a clearer picture. She told me later that it wasn't a pretty sight.

Both the urethra and prostate looked pink and healthy, however by the time he reached my bladder, even to a layman's eyes things began to look very different. There were plenty of white flakes flying through the image, and the walls of my bladder looked rather dark red. It was like diving to the bottom of the ocean while someone was disturbing the sandy floor.

I was in serious discomfort, so Dr. Caso kept his examinations as brief as possible. "I'm afraid there's a lot of necrotic tissue here, and it doesn't look as if I can save much of it, if anything", he said.

That wasn't good news. As I understand it, necrotic tissue is made up of prematurely dead or dying cells, and in my case it was probably caused by a combination of radiation therapy, infection and of course the invading cancer tumour. In essence, necrosis is uncontrolled cell death and can cause surrounding healthy tissue to get infected, eventually leading to dead cells when left untreated. This in turn leads to blood poisoning and eventually death - if such tissue is left in place for too long.

Here's the bad news: the only treatment for dead tissue attached to a living organism, and to avoid blood poisoning and ultimately death, is to surgically remove the infected parts. In my case this meant that despite everyone's best efforts, sooner or later I'd have to realistically say goodbye to my whole bladder.

* * * * *

Because we had spoken about this "worst case scenario" before, and both Julia and I had ample time to think about the effects it would have on our lives, this wasn't as big a shock anymore as it would have been otherwise. By the time Dr. Caso did this cystoscopy, I had already made peace with the fact that I may have to lose my bladder and would probably live with a urostomy for the rest of my life.

I was extremely sad about it, but if this was the only way for me to survive, I was confident that I was going to get used to a permanent plastic bag attached to my tummy. I kept thinking about how normal my colostomy had become, and had almost forgotten that it was only supposed to be temporary. It had only been with me for little over six months, and I had gotten used to it.

Sometimes it helps to know that there are solutions available, even if we don't know what exactly those may look like, or how they may function. If I think about that colostomy for example, I had no idea that there are several large companies on this planet that all specialise in ostomy supplies.

The same is true for urinary supplies. In fact, they're largely the same companies.

I remember thinking that a urostomy might even have advantages over using your regular internal bladder: no longer would I need to find a bathroom when my body told me so, and instead I could attach a larger bag if the need should arise. Think of long journeys on the bus.

When I explained my thoughts to Dr. Caso, he said, "Only you can see a silver lining in a urostomy". It reminded me of what Chet Baker and many other artists have been singing for years. His comment remained with me to this day, because it illustrates well that it really depends on our own attitude how we choose to perceive facts.

When the whole urostomy and bladder loss thing was first slapped on the table, all I could see was how bad the situation was going to be. How terrible and inconvenient.

As time went on, probably helped along by the inconveniences I had for several months with my whole abdomen, my attitude had changed. By now I was thinking that it might not be so bad to get rid of everything that's troubling me. This would include the agony I was casually living with.

The facts didn't change - they remained the same. It's like putting a new version of the operating software on your old mobile phone. The hardware remains the same, but the way the software uses it is different.

* * * * *

Dr. Caso had another piece of news to tell us: he had been headhunted by Baptist Hospital, and was going to leave Mount Sinai by the end of the year.

While that was very sad news for Mount Sinai, it became immediately obvious that once again fate had dealt me a rather good hand: in my upcoming surgical procedure, no matter how terrible it was going to be, my two favourite surgeons would finally be able to work together after all - something that was never going to be possible beforehand!

With Dr. Caso now officially under employ at Baptist, both he and Dr. Szomstein could perform the procedure together: one surgeon looking after my bladder, while the other would be looking after my guts. We had previously discussed that no matter where I chose to have the procedure done, there would always have to be a colon and a urologic surgeon present in a case like mine.

The only issue was that Dr. Caso wouldn't be properly setup in his new office until February 2017, so we'd have to postpone the procedure until that time.

We would have gladly done this, had my body cooperated with that idea.

'Tis The Season

I don't mind telling you, I was extremely grateful for the break from the chemotherapy. It was a great Christmas present, no matter what would happen next. The first week that I did not have to attend the hospital for an infusion felt like a real holiday. Despite the inconveniences of that ever growing hernia around my colostomy and my more or less permanent catheter.

To celebrate the occasion, my Mum had decided to leave the freezing shores of Northern Germany behind and come over to Miami Beach for a visit. I was very much looking forward to spending some time with her, especially given that none of us really knew what shape or form my treatment would take next, or what the consequences would be.

Instead of a hotel, she had found a very nice one-bedroom apartment in our neighbourhood. It was only two blocks away from us, and only a single block away from the beach. In fact, she was now living closer to the ocean than we were. What a treat!

My Mum prefers apartments to hotels when she comes over, due to the fact that she can look after herself. She can do her own cooking and washing, and not hunt around or pay extra for such services. Her apartment even had a small terrace on which she could catch some rays and stock up on that all important Vitamin D (this stuff is hard to come by in Germany, especially during the winter months).

Short term apartments and trips like these are always a great inspiration for my Mum. When she comes back, her head is filled with new ideas on how to re-decorate her own home, and something always seems to rub off from wherever she goes to visit.

As much as I was looking forward to seeing her, by the time Christmas was approaching, my abdomen felt increasingly tender and painful. It was as if the more my body was recovering from the chemotherapy, the worse I felt.

It was supposed to be the other way round: had my body indeed been able to recover, I would have certainly felt the positive effects, and that was simply not happening.

Walking and standing up became very difficult for me. God only knows what exactly was happening in my abdomen, but it can't have been pretty. On top of all that, ever since that cystoscopy, I noticed that my catheter wasn't properly draining my bladder anymore.

Prior to my rectal fistula, a clogged catheter was an extremely disturbing thought for me: the only exit pathway from the bladder was the catheter, and if that was not running, my bladder would expand until it's full without a chance to relive itself. The next step would undoubtedly be pain caused by bladder spasms, followed by permanent kidney damage. And pain. The memories of my 24 hour ER screaming experience were still all but too fresh in my memory.

Catheters can clog because of skin debris or other substances that find their way into the bladder. Under normal circumstances, when patients with a healthy bladder and good kidney functions get catheters, this is usually not a problem. But having just seen the latest live stream from the inside of my bladder, I had a good idea that plenty of debris was floating around, ruining that free-flowing experience I had for many months.

On a more positive note, my fistula actually took some of that mental pressure away. Essentially it was acting like a pop-off valve, just like that little emergency steam release on a pressure cooker. Should my bladder fill up to the brink, excessively pressurised urine would escape via my rectum. It was genius!

However, we had all hoped that said fistula may have healed itself by now; after all, that was the idea behind my catheter. I hadn't had any urinary output from my rectum for a while, which was a good indication that maybe that fistula was no longer around. But without somebody wielding scalpels in the operating theatre, none of us could really tell for sure.

If the fistula had closed itself, I did not want to risk it being blown to pieces again because of a clogged catheter.

* * * * *

I knew that something wasn't right with it though. I had enough experience by now to tell as much. With the holiday period coming up, I decided to make an impromptu visit to Dr. Caso's office at Mount Sinai for a quick consultation.

I even took my Mum with me instead of my wife, who would usually accompany me to such ordeals. While I would have loved to show her the sights around Miami instead, all my life had to offer right now were regular visits to the hospital. So I thought, why not share the urologist's office with my Mum on this occasion.

Lucky for me, I could be seen immediately, with my Mum patiently waiting for me in the reception area.

Sadly Dr. Caso had already cleared out his office and was no longer around, but a very friendly and well mannered colleague of his was on call, the venerable Dr. Polackwich. We had met at Mount Sinai's Emergency Room a few months earlier, just after my fistula had first been diagnosed.

I explained the situation of the not-so-well flowing catheter, and even told him about a theory I had as to why this thing wasn't working anymore. This was my theory:

On one hand, clogging could occur because of that cystoscopy and the fact that the fragile tissue had been roughed up, shedding lots of debris for the foreseeable future.

On the other hand, I had my suspicions about the type of catheter itself: I remember having been given what's known as a cue-de-tip catheter. That particular type can be inserted easier in men, because it has a thinner tip with a slight bend at the top. For people with enlarged prostates, it's the only catheter that will go all the way without a fight (and without causing severe discomfort in the recipient).

One peculiarity about the cue-de-tip catheters, at least the ones I've seen, is that they only have a single drainage hole at the top. If that's clogged up, the catheter won't run.

Straight tip catheters on the other hand have two openings on opposite sides. They're a little more uncomfortable to slide in, but since I don't have an enlarged prostate (yet), and I've had straight tip catheters before, I knew how well they worked.

Dr. Polackwich agreed with my theory and promptly tried a straight tip catheter instead of the one I was currently wearing.

Usually, with a quick catheter change in the office, all you do is re-connect the rest of the plumbing (i.e. the leg bag), dry up any spillage and walk out of the office. But because I wanted to make sure that my new catheter was running properly, I asked to wait until we could be sure of that.

Both the good doctor and a nurse agreed, gave me plenty of water to speed up the process, and left me to my own devices in the small treatment room.

Minutes passed. Half an hour passed. But sadly, that new catheter wasn't working either. Instead, my leg bag was empty and my bladder kept filling up.

A mild feeling of panic was rising inside me. If it wasn't a clogged catheter, why on earth wasn't this thing running?

I called for a nurse and explained the dilemma. She tried to reposition the catheter, succeeded for a moment, but eventually it stopped flowing again. We even tried another catheter just to make sure it wasn't a manufacturing fault.

But that one wasn't running either.

Because I had drank plenty of water in preparation for testing the whole plumbing scenario, my bladder started filing up rather fast, and pressure started building up. Very uncomfortable pressure.

To my surprise, something rather remarkable happened: my very much on-the-fritz bladder decided to be strong enough to bypass the catheter. That's a phenomenon whereby you urinate through your urethra, despite it being shared by a rubber hose. I had no idea this was even possible.

It was as if my body was saying, "to hell with catheters, I can do this on my own". I was surprised that my bladder was still capable of such a feat. I hadn't used any of those muscles responsible for urination in many months.

Admittedly this wasn't a pretty sight, but certainly an extremely relieving feeling (all over the treatment room floor).

Fun Fact: Contrary to popular belief, urine is nothing to be afraid of, kids. In fact, despite its sometimes peculiar smell, urine is a sterile liquid (unless your bladder is connected to any part of your GI tract).

Another Fun Fact: Women are more prone to urinary tract infections. The reason is that women have shorter urethras than men. When bacteria travel through the urethra from the outside, it will take them longer to reach the male bladder. During this longer travel time, bacteria have a better chance of being flushed out in men by a visit to the bathroom before they can reach the bladder and start multiplying.

After cleaning up a bit after myself, I tried finding the doctor, who by now was in consultation with another patient. By the time he came to see me, I had been able to bypass that catheter again - this time in the bathroom. So this phenomenon was not a peculiar one-off.

He was excited to hear of my success. It meant that because my body wasn't ejecting any urine from my rectum, there was indeed a good chance that the rectal fistula had healed. Moreover, without any of the catheters we tried giving me any benefit at all, we decided to remove the catheter altogether and let me see how I got on without one, like a (more or less) "normal" person would.

I couldn't believe my luck: first the break from chemotherapy, and now I'd be free from having that mega annoying garden hose stuck in my genitals. Things were looking up. What a Christmas present indeed!

* * * * *

But, as I would soon find out, this new found freedom was a very temporary visitor.

Fistula 2: The Sequel

There is a super ridiculous line in Lost World, the sequel to the original Jurassic Park movie. In it, Jeff Goldblum's character visits a seemingly dying Richard Attenborough, lying in bed with god-knows-what disease, and they're re-capping the events of the first movie (for the benefit of those who haven't seen it I guess).

Attenborough's character is setting up the new storyline, telling Goldblum something along the lines of "You see, we had a SECOND island..."

As far as I'm concerned, it's one of the worst ideas to make a sequel believable. I remember laughing out loud when I first heard that. I first saw the movie in Germany, so perhaps it was just an extremely bad translation. The Germans have a knack of ruining perfectly good movies with extremely rubbish translations. It's a rare talent.

When I watched the same film in English many years later, I seem to recall that Richard Attenborough references something like "Site B" instead of "a second island". Although only marginally better as a writing device, at least it sounds a little more professional.

I keep thinking of this line every once in a while when something of an "unplanned sequel" happens. Turns out that such an unplanned sequel was happening for me in January 2017. It was a sequel to something that we didn't want to watch in the first place.

* * * * *

At first, I was quite glad to urinate like a man again. Without that catheter. And through my penis. Actually go to the bathroom for something other than draining a plastic bag. It was fun! I had forgotten what that was like. All I had to deal with now was a mildly annoying colostomy bag, attached to an ever growing hernia. But that wasn't causing me any trouble.

The more I urinated however, the more weird it became.

At first there was perhaps only a mild burning, something that I expected to go away at one point. After all, I hadn't used those bladder contraction and release muscles for many months. You got to give that little guy some leeway for getting back into the swing of things.

The pain didn't go away. Quite the opposite happened: it went from "mildly annoying" to "rather uncomfortable", and following that, it went all the way up to "ay caramba".

It became so bad that I was wondering which pain was worse: living with an indwelling catheter, or living with excruciating pain during urination several times a day.

It was around this time that I've noticed something else: my urine was no longer the clear, sterile, transparent yellow substance we all think it should be. Not only did it have a slightly putrid smell to it, it was also turbid, a little milky with a tinge of orange.

I wasn't really concerned about this at first. Thinking of what my bladder looked like on the inside and what it had been through recently, I was not surprised that I wasn't producing AA Grade urine anymore.

There came the point at which I felt solid bits floating around in there, and I could feel them coming out too. Were those blood clots again? Had my aggressive tumour started growing again, wreaking havoc with my abdomen once more?

Actually, yes and no.

Yes, it was definitely growing again as we would soon find out. But no, it was not giving me that gross hematuria again, so I did not have blood clots in my urine. After closer examination, those bits were actually... it appeared as if... they looked like food!

Such discoveries really mess with your brain, I don't mind telling you. We had eaten something that contained pineapple one day, I can't remember what now, probably Hawaiian Pizza or a Hawaiian Sandwich and pineapple has a lot of undigestible fibre in it.

Apparently, pineapple also makes your teeth rot when you have nothing else to eat, for example when you're stranded on a desert island. Or so I hear. Anyway, pineapple has a lot to answer for as it is!

But pineapple bits in your urine? That can't be right. How would they get there? If it actually was pineapple, rather than dead skin cells disguised as pineapple?

Logic dictates that the only way for pineapple bits to end up in my bladder was that my bladder and my GI tract were now somehow connected. Why, how and for what purpose was not immediately clear.

It couldn't have anything to do with my rectal fistula, because up to this point, my rectum-slash-bladder conglomerate was a closed system, disconnected from the rest of my GI tract. If this was a new connection, it must have been made further up "the food chain".

* * * * *

Over the next few days my wellbeing started to greatly deteriorate. Again. Not only was urination causing me more and more pain, it was also becoming more frequent. I noticed that I was going to the bathroom at least once every hour, which was bad enough during the night.

All of a sudden I had to go perhaps twice an hour, sometimes more. This didn't happen overnight but gradually, over a period of several days. If I went just before leaving the house for a short walk, I noticed that standing up rather than sitting down after urination made me want to go again, within a matter of minutes. That couldn't be a good sign.

In addition, walking was becoming increasingly difficult. It was worse than ever before. Not only did I have this urge to urinate after standing up for longer than a few minutes, I also had trouble standing up straight. The only way I could set one foot in front of the other was by bending forward a bit, like old people do.

My walking speed was another matter. A very slow stroll, with perhaps one step every few seconds was the maximum I could muster. Anything faster would lead to pain. As a nasty side effect, walking around bent over isn't good for your lower back either, which is the next bit in my body that started to complain. Sometimes it's the side effects that are worse than the actual medical issue you're having.

I wasn't going to be beaten that easily though. I decided that if I had to walk and feel like an old person, perhaps I should get a gadget to go along with the whole experience.

I had seen these aluminium walking sticks at my local drug store. They came in various funky colours, with a gel grip and adjustable height. They even had an attachment that made it stand up by itself, with the help of four little feet at the bottom.

I kept thinking how such a cane would improve my walking experience. And one day out of the blue, while shopping for some milk and cookies, I took the plunge and bought one. It was only $20 and came with a blue-purple flower pattern.

What can I tell you? It worked a treat! It took some of the pressure off my lower back and improved my mobility and mental stability too. It was a good thing to have, just in case I needed it. Sometimes I took it with me without ever using it, whereas other times I was very glad to have a helping hand on which I could lean.

You see, with cancer, one rather weird thing is how unpredictable you'll feel sometimes. One day I would feel relatively fine, and the next day, out of the blue and with no warning, I'd feel really bad. There's no way of telling when these periods will come, they'll drop by completely unannounced.

At least when you've exercised the day before, and as a result feel a bit weaker today, then that's an explanation. It makes sense. With cancer it doesn't work that way. One day you get up and you've only got 10% of the energy you had yesterday. All you can do is lie in bed and not move.

It has mental consequences too. I tend to give myself a hard time for not feeling as good as I had expected that I should, but of course that's not exactly helping make the situation better. Besides, it's the Bullshit Brain talking. I have to make a conscious effort to remind myself that it's perfectly OK to feel low on energy some days. We all have such days from time-to-time.

With cancer it seems multiplied by a large unknown factor though. It's bizarre. It's completely unpredictable. All we can do is acknowledge the fact and assume that tomorrow will be better - which it usually will be, and if not tomorrow, then the next day.

I'm mentioning this here as a reminder to all of us, including myself, because it's something we humans seem to forget too easily. If today isn't great, then we automatically assume that this state is going to last for the rest of our lives.

That's very likely not the case. It's simply not true. It only appears that way when we're down.

We do the same when we feel good: we assume this super awesome feeling is never going to stop. Look at young people, they're all invincible. I know I felt like that when I was young. Health? Issues? What are ya'll talking about? I'm going to feel like this forever!

All such extremes are temporary. Things change all the time, life is very dynamic.

Don't worry about remembering this snippet of inspiration when you're feeling great though - but definitely make a mental note of it when you're in the dumps.

* * * * *

If the pain during urination and walking wasn't enough, there was a third issue that was starting to creep into my everyday life. Cue Richard Attenborough: "We had a THIRD issue..."

As you can imagine, diverting your colon output into your bladder isn't a great design choice. Yet my body, under the direction of my genetically mutated cancer, thought it would be fun to try. It didn't work out so well.

I started exhibiting signs of a serious infection as I would soon find out. At first it was a simple sensitivity to cold, more so than usual. Granted, these were the winter months, but in Miami Beach they are generally mild compared to what the rest of the northern hemisphere has to offer in January.

Something as mild as 20 C (76 F) would be too cold for me, uncomfortably cold. I had to wear a thick woolly jumper at all times, including in bed. Even worse were visits to places like the supermarket or the hospital, where the air condition is usually stuck on the "meat locker" setting.

It got so bad that I had that shattering teeth phenomenon again. I simply could not stop shaking. One day it was so bad that I felt like I was frozen to the core. Like the feeling you get when you've been out in the cold for too long, without the part where you're gathering by the open fire with friends, sipping mulled wine.

Thankfully, my regular preferred and over the counter painkillers whipped me back into shape, at least temporarily. The incident was severe enough to make an appointment with Dr. Cusnir and discuss what was happening.

We met with him a few days later and explained the situation. The results from a scheduled CT scan from one week earlier were back at this time too, so it was a perfect occasion to get together and discuss what I was experiencing, and how we should proceed.

Dr. Cusnir was not happy. This is extremely rare for him. He was as concerned about the symptoms I was describing as Julia and I were. But, like myself, he never lost his sense of positivity about the whole case. Even if it meant drastic measures had to be taken, I had a feeling that he had a wealth of options to try before throwing in the towel. I don't think Dr. Cusnir is a “throwing in the towel” kind of guy, no matter how tough the situation is.

His thoughts were very straight forward and he shared them with us. He believed that, as soon as we had taken the chemotherapy away, my cancer started growing again. This was causing all kinds of trouble. That made perfect sense to us.

First, there was the infection I clearly had. The same day's blood test confirmed as much. Elevated white blood cells above 10,000 cells per microlitre is usually a sign of trouble.

Fun Fact: White blood cells are your friends; they're the good guys fighting infections in our bodies. But they're also an indication of how infected we are.

Here's what's happening: the more infection is detected in our blood stream, the more white blood cells are generated as a result by our body. This is happening so that infections can be fought more efficiently. It's like hiring more people for an army of fighters.

This mechanism also acts as a good barometer for doctors, who can check if an infection is present, and how strong it might be. The more white blood cells they detect, the more infected our body is.

When the infection is over, the white blood cell count goes down again. It's like dismissing the soldiers from the army, giving them medals for outstanding services.

If our white blood cell count is too low, it means that our immune system isn't as efficient as it should be, and there is a chance that an infection can grow bigger than it should. As a result we could get ill.

The cause of my infection was probably what he believed to be a second fistula. The one we already knew about was connecting my bladder to my rectum. That one wasn't the issue, because the whole thing was a closed system.

Since I found food bits in my urine, it appeared as if another part of my GI tract that was still in use was now connected to my bladder as well, probably a part of my small intestine. The plethora of usually healthy bacteria - when confined to the GI tract - were now procreating inside my bladder like there was no tomorrow.

The really bad news is that when your own body cannot fight an infection, no matter how many white blood cells he makes, and the infection is not kept under control with antibiotics, the next step is sepsis. And that's deadly.

My infection was obviously out of control, so Dr. Cusnir recommended we go to our ER of choice to make sure it didn't get to the point of sepsis. It was not clear how quickly the infection would grow.

So we hatched a plan: perhaps Baptist Hospital was the best place to go, because my colon surgeon Dr. Szomstein was working there already, and my bladder surgeon Dr. Caso had just transferred there. Whatever they'd find out, perhaps they could prepare themselves for surgery while I was there. Maybe we could get that infection under control, and if indeed I was having a second fistula, perhaps they could both surgically see to it that we fix this whole mess in one fair swoop.

I was prepared at this point to trade my bladder for my health. Whatever they needed to rip out to turn me into a half-human again, they were welcome to do it. They had my blessing. I was close to begging them to take it all out and leave me in peace.

The trouble was, the condition I was in would make any type of surgery impossible.

ER. Again.

"Rats", I thought.

I was severely weakened by both the cancer and the abdominal infection. I had had chemotherapy not too long ago, as well as radiation, and surgeons would ideally like a break of at least 2 months from either before sharpening their scalpels and going to work. Radiated tissue is especially weak and does not heal like healthy tissue does.

Even before we stopped the FOLFIRI treatment, Dr. Cusnir had discussed his thoughts for an upcoming surgery. To completely remove the rest of the cancerous tissue from my body, with no chance of it ever coming back to haunt me, he suggested - rather matter-of-factly and with a smile on his face - a pelvic exenteration.

It sounds rather cool when you don't know what it is. But as soon as you read that first sentence of the Wikipedia description, and then imagine that it's happening to your own pelvis, many of us may well change their minds.

The procedure, also known as a pelvic evisceration, removes all organs in a person's pelvic cavity. This includes the urinary bladder, the urethra, the colon, rectum and anus.

In men, the prostate is removed while they're at it. In women, several other bits are removed on this occasion, namely the vagina, cervix, uterus, fallopian tubes, ovaries, and in some cases even the vulva. In short, everything from the small intestine downwards.

Merry Fucking Christmas.

I know, this is a tough one to swallow. I had to read over that bit several times myself. The thought of such a procedure potentially waiting for me during my next hospital holiday wasn't something I was looking forward to.

Truth is, doctors are going to extreme measures like the above because that's currently one of the safest ways to make sure cancer is not coming back to kill you. They don't do this because they want you to have a severely reduced quality of life. They're suggesting such things to KEEP you alive.

If you think about it, none of the above-mentioned organs are vital to our survival. I'm not saying they don't matter, quite the opposite. It was extremely difficult for me to entertain the idea of living without a bladder, after that suggested radical cystectomy. But I had reached the point at which I would have done anything for the pain to go away, and stay away.

While I may have come to terms with having a life-long urostomy as my friend, I was perhaps ever so slightly taken aback by the idea that doctors often have other options that are several times more shocking than the one you thought was already terrible enough. Like this example shows.

A pelvic exenteration might have even made sense in my case. After all, my strand of cancer was so vicious that neither chemotherapy nor radiation could kill that thing. So I guess by depriving cancer of its food (i.e. my entire pelvic area) we would simply starve it to death.

It's the same idea as in the video game Halo: kill all intelligent life in the universe, therefore the evil Flood will also die due to lack of hosts. It's a win/win for everybody! Except perhaps for all intelligent life in the universe.

Lucky for me, it never came to a pelvic exenteration. We could leave such an extreme measure as a backup plan. In the meantime, Dr. Cusnir had another ace up his sleeve, which he wanted to try first. His secret weapon was called immunotherapy.

However, before we could get started with that, we had to make sure we sorted out the more serious issue: my infection and that possible second fistula.

* * * * *

We grabbed our admission papers to the Emergency Room that he gave us, went home to pack our bags, and took a cab to Baptist Hospital. By now we knew the drill all too well and we mentally prepared ourselves for a stay in excess of a week. Anything could have happened while we were there.

Perhaps things weren't so bad. Or perhaps things were going to be far worse than we could imagine.

I remember feeling ill and nauseous during the cab ride, but relatively calm. One of my favourite Queasy Drops helped alleviate the feeling of nausea.

It felt like a routine trip. Ventures such as these had become normality for us. I knew they'd be able to help me at the hospital, and should anything drastic happen, I would already be in the right place.

When we arrived at Baptist Hospital, I carefully and slowly tried to get out of the cab. Thankfully I had my Marty Crane type walking cane with me, otherwise I probably wouldn't have made it out of the car. Julia rushed ahead while I took my time passing all those lucky people who were waiting outside the hospital, waiting to be picked up to go home. I thought, "One day, I'll be one of those people. One day, I'll be picked up here, healthily discharged. One day.".

Until such time, I still had a tough journey ahead of me. It began by me having to wear a face mask as soon as I stepped into the waiting area. Anyone could wear one voluntarily, but I was required to do so due to the risk of having a contagious disease. Julia had already signed me in and Reception Lady was briefed about our case.

I don't know if Dr Cusnir's office phoned ahead and warned them about me, or if it was my admission papers with that big red "Extreme STAT" sticker on it, but I've never had such fast and preferential VIP treatment at any Emergency Room before. I had barely time to sit down (as slow as that process was), when an orderly with a wheelchair arrived and whisked me away to triage.

I was so grateful that we could skip the whole waiting game, that they knew I was on my last legs and urgently needed some help. I'll probably never find out what the magic words on those admission papers were, or what Dr. Cusnir had told them about me in advance.

Back again in one of the darkened rooms at Baptist ER, chilled down to the "seriously no longer comfortable" setting, a friendly nurse came by for my immediate infusion of Zosyn antibiotics. We had been here so often, we even recognised her. I believe her name was Rocio.

She was an Indian lady, about our age, very quick and efficient at what she did, friendly, professional, and had one quality not all hospital nurses have: she was able to listen. That's such an important character trait, because if you've been through as many hospital visits as I have, I may have information for those treating me that may be quite important.

For example, my veins were toast. Probably as a result of countless blood tests and intravenous poisonous infusions with needles. Nurses call people like me a "hard stick" (as in they can't easily insert a needle into my veins anymore). It wasn't always like that. Usually, on my right arm, there's a huge vein waiving "hello" at anyone in scrubs, but because it had been stuck one too many times, a generous layer of scar tissue now fends off future needles.

As a result, my vein bends and the needle doesn't go in without a fight (of which I'm usually the loser). I've had several nurses and phlebotomists try to stick needles in me several times without success. The rule seems to be that if on the third try said nurse is unsuccessful, a supervisor has to be called in to give it a go. I've also had that happen on a few occasions. The supervisor nurse with more experience and kinder hands usually nails it. Needless to say it's further discomfort we could all do without.

The vein on my right arm I was describing isn't the only one that has an issue with being stuck. I seem to have developed this phenomenon with pretty much every single vein on my body. It wasn't always like this.

But back to Rocio, that very friendly and knowledgeable ER nurse I was talking about. After telling her all the above, about me being a hard stick and all, she still had to attach an intravenous line to me somehow; they needed to administer medication and take blood daily to monitor my wellbeing.

As I mentioned earlier, I have that subcutaneous access port in my right shoulder. So instead of going through the ordeal and force a needle in me, I suggested to use my port. It's a common scenario with cancer patients for both blood tests and infusions.

The thing is, nurses need special training as well as the right supplies to access these ports, and while chemo infusion suites are usually equipped with both personnel and supplies, an Emergency Room or regular hospital ward may not be.

I've tried long and hard to convince every nurse I'd met to simply draw blood from my super convenient port and you would not believe the amount of excuses I get as refusals. Even when a port is already accessed, with the Luer Lock(TM) hanging out, some nurses don't want to use it.

"Yeah, but no, it's like... there could be erm... it's kind of dangerous, and it may not be safe and that..." (read: "we have no idea what a frigging port is, nor do we know how to handle one"). I was used to this by now and usually, after trying my best to list all the advantages of my port, settled for somebody playing the needle lottery with one of my veins while I bit on something to endure the pain.

Which is why I was so happy when Rocio said, "You have a port? Fantastic - let's use it!"

Fate was smiling upon us again that day, and I knew that no matter how bad the forthcoming decisions of that surgery were going to be, one major milestone had been achieved: all intravenous shenanigans would happen through my port, not a vein. Huzza!

A little while later we left ER behind to get an inpatient room in one of the towers, like we had many times before. Julia keeps telling me that it was in fact the very same room we had been in, almost a year ago on our first visit, after that initial big surgery. Having been a little drugged-out at that time, I do not recall such details.

Dr. Szomstein had already been briefed, and he visited us sometime during the evening. Remember, he's the man who never sleeps. I still don't know how he does it.

I told him the same as I'd told Dr. Cusnir and showed him the radiologist's report of the CT scan. Dr. Szomstein asked if I had a CD of the images with me; he suggested that he could have a look at those with another radiologist, specifically looking for signs of a fistula. It might provide a clue as to where exactly that connection was, so that we could discuss surgical options to keep my infection under control.

His idea was that if the fistula was low enough, we might be able to divert my GI tract at that point and turn my current colostomy into an ileostomy. I liked his thinking!

Thankfully I had such a CD and gave it to him. Dr. Szomstein took it away and promised to be back with further news, as soon as it broke.

* * * * *

Come to think of it, I have a CD of almost every scan they ever did of me. This includes CT scans, PET scans and even MRI scans. I remember sharing my first CT scan with friends on Facebook right after I had it back in 2015. Those images certainly make for interesting viewing.

If I'd edit them all together, it'll probably be a two hour movie (or perhaps slightly shorter).

Actually that's a great idea... check out my website supersurvivor.tv for the epic and experience me "from the inside"!

Coordinating Hospitals

For surgical procedures, we liked going to Baptist Hospital because that's where I had met Dr. Szomstein. He was the only surgeon I knew, aside from Dr. Caso, and as such I wanted him to be involved with future surgeries. It's like having your favourite car mechanic or tattoo artist.

Plus we knew many of the nurses in the in-hospital wards, and we knew how the OR preparations worked. In short: we knew what to expect. Why risk going elsewhere when you've got a good thing going?

My ongoing cancer treatment however was now deeply routed at Mount Sinai on Miami Beach, some 30 miles away from Baptist Hospital. This is where Dr. Cusnir, Dr. Kuritzky - and until recently Dr. Caso - were taking care of me.

After my first surgery, it was possible for my then oncologist to drop in, check up on me and coordinate his treatment plans with the doctors that were on call on the ward.

Now that my treatment and my oncologist were based at a different and somewhat competing hospital, how could we coordinate efforts between the two facilities, keeping the patients best interest in mind? After all, it was logistically not possible for Dr. Cusnir to spend half a day driving across town to see a single patient. So how were we all to communicate?

Email.

It sounds so simple, but it's worth explaining this a bit. The more I spoke to other patients, it appears that many do not make use of how doctors and patients can (and perhaps should) communicate. You see, we all had established a very close relationship with one another by now. This included Dr. Cusnir's nurse practitioner Dr. Karen Stephenson.

So much was happening in such a short amount of time that I felt it necessary to update everyone about my wellbeing, even if it meant that the next physical appointment was a few weeks away.

Communicating via email allowed us all to move appointments, scans and treatments at a moment's notice, without interrupting our daily schedule, thereby making sure my cancer could be dealt with as efficiently as possible.

It worked both ways: should a test result be back earlier than expected, Karen would email it to me and explain the consequences in the message. This was great for me because I did not have to wait several weeks to see how my body was doing.

If medication was necessary as a result, she would simply write a prescription, send it to my local pharmacy electronically, and I could pick up whatever was necessary a couple of hours later. No appointment was necessary, and we didn't have to waste any time waiting to see each other in person.

Now that I was in hospital again, we kept the same system. Everyone involved, no matter which hospital they were based at, was informed of what was happening, ready to make suggestions as to how we should proceed together.

* * * * *

When Dr. Szomstein came back from his chat with his radiologist friend, his face was a little grim. We had hoped that a quick nip/tuck job courtesy of his skilled hands might whip me back into shape.

But it was not to be.

"We're pretty sure that there is a second fistula, connecting your small intestine to your bladder. We can see as much on the CT scan. But what we can't see is its exact location. We can only determine that if we open you up and have a closer look."

At that point I was up for anything. In fact, I had more or less expected that some kind of surgery procedure was necessary anyway, so why not just open me up and take a look at the situation.

I was in such a bad physical condition however that opening me up to have a look, let alone a quick nip/tuck job was just not an option - no matter how many blood transfusions they'd give me. Patients in my condition would simply not survive.

"Even if we'd take the risk and do it anyway", Dr. Szomstein continued, "there's no guarantee that we can divert your small intestine at the right place. If the fistula is too high up, the diversion would leave you without the ability to digest food properly, so that's not an option."

In other words, yes there was a fistula, but no, there was no surgical option to deal with it at this time.

This was not good news. Especially coming from Dr. Szomstein, who was somebody who always had a solution to problems. But not this time. We could tell he didn't like this. He was as unhappy about it as we were.

* * * * *

Once again it seemed that we were out of options. It's not like we had reached a crossroad section and didn't know which road to take. There simply was no road left. Again. The treatment wasn't working and no surgery was possible.

What should we do now?

I was in no mood to eat. Plagued by stomach cramps, caused by some gas trapped in my hernia, not to mention the effects that infection had on me. This thing had managed to connect all kinds of body parts that had previously led a happily unconnected life.

The good news for Julia was that she could at least have all those excellent hospital meals that I decided to leave on the tray. That aside, we were both pondering the situation.

We had been at this point before. This time, we knew not to give up so easily and decided to let time pass for a bit. We were stressed out enough and on our last legs mentally, but there was also an interesting feeling of calm with us. We had the trust and conviction that some solution would present itself sooner or later.

It had done before, and the same would happen again this time. It was the Rubik's Cube Analogy all over again: just because you don't know what the solution to a puzzle is, it doesn't mean there there isn't one. We were sure there was, it just hadn't presented itself yet.

* * * * *

I remember the doctor on call was the wonderful Dr. Rubiano. She did her best to take care of my wellbeing. She made sure Dr. Gaviria was briefed, my previous infectious disease physician, so he could take care of prescribing the antibiotics that would work best in my case. He knew my history, and he probably knew best.

Dr. Rubiano also transferred us to a much quieter wing of the hospital, one we didn't even know existed, exclusively reserved for cancer patients in great distress. An orderly transported us it was in the middle of the night, adding the effect of this being a rather secretive operation.

That room was massive! It felt like a suite in an expensive hotel rather than a hospital. It even had a view over the almost finished Miami Cancer Institute, the building on the Baptist campus that would soon house a new proton radiation machine, the same building as Dr. Caso's new office.

He was still settling in at that point, and sadly we didn't get to see him during our stay. I remember he sent me a message telling me that although he didn't have an office yet, he was already given access details to the computer system. This allowed him to write a prescription for something called Myrbetriq to calm down my occasionally spasming and slightly overactive bladder.

They have the cutest commercial for this product: in it, a 3D bladder constantly pulls at a woman's arm, telling her that she should go to the bathroom. Eventually her and the 3D bladder sit together with her urologist, who prescribes the product and explains what it does. Meanwhile the bladder listens attentively to the urologist, while we listen to the 497 side effects this stuff could have.

* * * * *

I decided to send an email to all doctors, relaying Dr. Szomstein's analysis of the recent CT scan, and his opinion that no surgery was possible at this time. I also explained that I was keen and ready to start that immunotherapy treatment as soon as possible, but was not sure how quickly I could be discharged from Baptist and go back to Mount Sinai.

We were in the middle of a hash fight with an extremely aggressive infection, which had to be brought under control before any immunotherapy could start. Immunotherapy works with your immune system and I was being given concoctions of antibiotics weakening the same, stripping it bare. Dr. Gaviria was trying to fight off this infection with every antibiotic known to man.

At one point nothing was working and I was getting weaker by the day. He had to keep switching combinations and checking my labs until one day he unlocked the magic combo and those critters started to get under control.

Besides all that, there was a potential insurance approval delay. Our health insurance would have to sign off on the immunotherapy, otherwise I wasn't going to get it. The rule was that suitable candidates must have failed at least one conventional treatment method to be eligible. No-one could predict how long it would take Florida Blue to make the yay or nay decision.

Dr. Cusnir replied to my email within 24 hours. He suggested to put me on something called TPN, short or Total Parenteral Nutrition. This is an intravenous infusion of nutrition, which allows the human body to get all the calories, vitamins and nutrients to sustain itself without having to digest food.

His thinking was that the TPN would allow my infection to be treated and cured, while it would assure that I was not continuously re-infecting myself through the intake of food. Although I was currently not eating, my muscle and fat reserves were being depleted rather quickly, which meant my body wasn't healing well.

Dr. Rubiano was instrumental in making Dr. Cusnir's suggestion a reality. "That's a great idea", she said. "This would solve some of our immediate problems and buy you some time until you can start the immunotherapy".

You have to appreciate the chain of events here: Dr. Cusnir responds to a patient's personal email, sent from a competing hospital at Mount Sinai, and the doctor on call at Baptist says, "let's do it". Seriously cool!

100% team effort!

They could have easily said, "who the hell is Dr. Cusnir", but instead they put the patients wellbeing and best interests first. Whoever gets the credit is not important.

* * * * *

Another thing that came from our email discussions was Karen's suggestion for me to use condom catheters.

Since my indwelling catheter was removed, and my mobility was severely impacted by whatever was going on in my abdomen, it was difficult for me to get out of bed to use the bathroom.

By this time I had to get up every half an hour and relieve myself with severe pain, and that wasn't great for my healing process. The acrobatics of getting in and out of bed, with or without help, would eradicate any benefit I would get from any necessary bed rest.

I did try using a urinal, but that wasn't a long-term solution to the issues I was having. I still had to be awake, and it wouldn't completely empty my bladder either. I was so sleep deprived that I started having weird dreams and hallucinations.

We did try an indwelling catheter while I was in hospital, but it clogged up almost instantly. There was so much crap in my bladder (literally as well as metaphorically) that it just didn't flow. Hence, this was not an option and we removed it within two hours of placing it.

Condom catheters on the other hand did the trick quite nicely. Primarily designed for patients suffering from incontinence, they work much like regular prophylactic condoms. They are a bit shorter and covered with some sticky stuff on the inside so they won't slip off.

They come rolled up into a little ring, cover the tip of your penis and have a small hose bit at the top. This bit can be connected to a standard urine collection bag, allowing the wearer to relive himself anytime and anywhere, even he's asleep or incapacitated.

You still have to make a conscious effort to urinate, unlike with indwelling catheters that keep the urethral sphincter muscle open (that's the thing you have to release in order to pass urine).

Had it not been for Karen's suggestion in response to my email, and me sharing these issues in the first place, I would have never known of the existence of condom catheters and how helpful they'd be in my situation. Baptist Hospital was happy to give me a selection of different sizes and models to try. I settled for the the Coloplast 30mm ones in case you're interested (or I forget).

* * * * *

I cannot emphasis this enough: the more you share with your doctors about what's going on for you, the more they can help you. As a patient you have a good amount of influence as to how you'd like your treatment to go. You can ask for things, and unless it's a really bad idea, you won't be denied what you request.

The above is a good example of how things can play out. Hospitals and nurses don't know your situation as well as you do, but most of them are very happy to listen and grant you what you need within reason.

Don't be afraid to ask if you're in a similar situation.

* * * * *

When we first started coming to Mount Sinai, we had a great social worker named Gail Brown. She gave us a quick introduction of how the treatment was going to work and what resources were at our disposal.

Social workers are fantastic contacts to remember, because you can come back and pester them to repeat what they may have already told you (when you weren't exactly listening because the situation was daunting enough at the time).

One thing Gail made clear was that during the treatment, it was vital to tell the doctors everything I noticed and let them make the decision if it was related to my illness or my treatment. "It doesn't matter what you think of your own symptoms; you must tell your doctor, otherwise he can't help you", she said.

"If you bump your big toe and you feel pain in that region, do still tell him. Even if the doctor tells you that you're feeling pain because you bumped your big toe, he needs to know what happened. But if you develop a skin rash and think it's because of your washing powder, and decide not to tell your doctor about it, he won't be able to help you. A skin rash may mean that the current treatment isn't right for you".

Thanks for driving that message home to me, Gail! I made sure I told my doctors everything, probably a lot more than they wanted to hear; but in the end this strategy has paid off, and I got presidential VIP treatment as a result.

Home Infusion Days. Again.

Once my infection had started to cool down a bit, thanks to the combined efforts of both teams of doctors and nurses, I was discharged from Baptist Hospital with instructions on how to keep both the antibiotics as well as the TPN going.

The idea was that the antibiotics should be administered for another six weeks every day, and the TPN to be open ended at the discretion of Dr. Cusnir.

Logistically this worked thanks to the same home-delivery pharmacy that we had used before, a company called Optioncare, a subsidiary of the CVS/pharmacy chain. These guys were responsible for mixing my medication(s) and delivering all the necessary supplies via specialist drivers, delivering well into the late evening. Sometimes they'd show up on a Sunday at 11pm, very reliably.

Other times, perhaps in an attempt to save some money for the company, a UPS driver would drop off my packages. On some of the latter occasions, packages would be sent to the wrong address some 50 miles away because - get this - "the address up there sounded vaguely similar to yours". Sigh!

As much as I like UPS and what they've achieved for home delivering Amazon packages, perhaps they might not be the appropriate choice for shipping medical supplies. Telling me that you are returning supplies that are both time sensitive and need to be refrigerated back to a hot Miami warehouse, to be re-delivered the next day, is not an option. It even says it on the outside of the box - in red! But hey, I'm still alive despite such hiccups. That's all that counts here.

* * * * *

Unlike last time, when I had home infusion antibiotics delivered, this time my daily shot of Invanz was supplied pre-mixed in something called a MediBall. These gadgets are pressurised containers within a container, which upon connection to my bloodstream would automatically discharge themselves at the right flow rate.

MediBalls are the size of a tennis ball, made of hard plastic on the outside, with a Luer Lock(TM) line attached to it. After priming it, all I had to do was connect it to my accessed port once a day and wait for half an hour. Because these balls were not required to hang from a gravity pole, I could conveniently put them into my pocket and walk around with them, all the while being infused with antibiotics.

Supplies would be delivered as two or three large white boxes covered with styrofoam and cool gel packets on the inside. This would assure my medication arrived without going off from storage and transportation in hot warehouses and cars.

When they arrived once every week, we had to unpack them and store the medication and TPN bags in our fridge so they'd keep fresh. There was this one time when we had a few MediBalls left over, and didn't store them in the fridge. That wasn't such a good idea. The solution on the inside turned reddish and had an evil glow to it.

Needless to say, I never used those MediBalls.

* * * * *

When we arrived back home, with the first TPN infusion scheduled for that evening, we had help setting the whole thing up. Our old friend George from Cuba was back, still in love with both himself and our bathroom mirror. His job was to prime Julia on how to mix the TPN, prepare the pump and attach it to me. Although I paid close attention, I was in no condition to do this myself.

There's a great many parts to the puzzle of administering a TPN at home; there's the actual 2.5 litre bag, into which two vials of vitamins need to be injected. This can't happen beforehand because the whole mixture would go off. The solution had to be drawn out with proper 18g needles and a syringe, then injected into the big bag.

In addition to vitamins, there was also a pre-filled syringe full of a clear liquid called... it was called... I forgot what it was called. I also forget what that was supposed to do, but I guess it was important - otherwise they wound't have given it to me.

Once all ingredients were mixed into the big plastic bag, we had to prepare a small portable pump that ran on two C type batteries. Each set only lasted for one day, so we ended up with a criminal amount of half-empty Procell C type batteries. Considering that I was using the system for the better part of a whole year, a rechargeable power supply would have probably been a better solution. Maybe next time.

With the pump setup correctly, a thin plastic line needed to be placed inside it. One end of which was connected to the large plastic bag of TPN solution, inserted with a rather hefty plastic spike. The other end needed to be primed before it could be connected to me, at which point the infusion could begin.

Fun Fact: "priming" in the medical world means to let the air out of something hollow, like a line or a syringe. Without priming such a device first, you'd inject a certain amount of air into the blood stream. This isn't a problem if it's only a few millilitres here and there, because the air somehow magically mixes with the blood.

Too much air in your blood can cause havoc to your body by reducing or completely blocking the flow of blood. This is known as an air embolism. It's a popular problem with divers, whose lungs over-expand and thereby letting too much air into their blood streams (unconsciously and unwillingly of course).

When finally switched on, the TPN would run for a total of 14 hours. Add to that the 30 minute preparation time, and the better part of your day is taken up by living for the TPN.

We administered it at 9pm in the evening, which meant I could go to sleep with it. It would hang from a 6ft tall pole next to my bed. The theory was that during the night it would not bother me, leaving much of the daytime hours free so I didn't have to carry it around with me.

The whole system was designed to be portable: both the TPN solution and the small pump were stored in a black nylon bag with several carry straps attached to it, so when I wanted to go out (if I was actually able to move around), I could use the bag like a rucksack. All that was visible was a plastic line from the bag to the top of my t-shirt, where it vanished from view, neatly doing its thing.

As I got better, and was able to go out more, I frequently took the TPN with me. It wasn't really a problem or a hindrance; in a way it was very similar to my 5-FU chemo pump I had to use before. The TPN was larger, heavier and bulkier, but like so many things in life, we humans can adapt to such situations with ease.

* * * * *

There was one peculiarity we had to take special care of when mixing and attaching the TPN. The human body cannot live on glucose and protein alone. Fat is important too, although the poor thing is often blamed for turning us into what it is: fat.

Technically this is incorrect: as Andreas Eenfelt explains in his book, "Fat doesn't make you fat, just like green doesn't make you green".

In the TPN, certain bags contained lipids in addition to glucose and protein, giving these bags a milky appearance. Lipids are a little tricky to explain. In a nutshell, they are molecules that help dissolve things like certain types of fat and vitamins. In addition, lipids make up most of our cell's membranes. Fatty acids for example are lipids.

By adding lipids to some TPN bags, I could get such fatty acids injected into my blood stream alongside all the other goodies. The calorie content of lipid bags was about 1900 calories, compared to 1200 for non-lipid bags. Out of seven TPN bags, four were standard bags and three were lipid bags.

We had to alternate between them every other day except for weekends. This was important to remember for us because the solution containing lipids required a slightly thicker line for the pump. Other than that, the effects of lipids versus non-lipid bags were imperceptible to me.

* * * * *

As soon as I felt a little better, thanks to the excellent job the antibiotics did, combined with the fact that I no longer infected myself through the intake of food, I was able to prepare and administer the TPN myself. Julia and I took it in turns from then on.

I'll talk more about my bodily feelings during the TPN months in a later chapter.

Kidney Trouble

We were all monitoring my kidney functions at this point. While I was in hospital, the doctors had spotted that several levels had increased to values that were just too hot for comfort and warranted closer investigation.

In my case, the values that raised concern were creatinine and something exotic called blood urea nitrogen (BUN for short). Both of these can give doctors an indication if the kidneys are doing a good job, or if they're on the fritz.

Creatinine is produced by our muscles at a fairly constant rate, depending on muscle mass, and it's filtered out by our kidneys. Depending on how well this filtering process works, the creatinine levels should be between 0.6 and 1.35 milligrams per decilitre (mg/dL), which is regarded as "normal". That's depending which lab in which country you ask. Anything higher suggests the kidneys can't filter blood as efficiently as they should, eventually leading to all kinds of trouble.

The BUN levels are a similar indicator. Urea is produced in the liver and again filtered by the kidneys. A normal level is somewhere between 6 and 20mg/dL.

Mine was as high as 67mg/dL at one point, and my creatinine level was a worrying 2.4mg/dL. That was bad enough to give the doctors rise for concern, especially given my difficult bladder issues.

Kidney impairment can be caused by many factors, but one of the popular ones include urinary tract blockage (that's when urine cannot leave the kidneys, for example when you've got a monster tumour growing in your bladder that doesn't let you urinate) and strong medications such as endless infusion of antibiotics and countless cocktails of chemotherapy.

Symptoms of kidney failure can include leg swelling, tiredness and confusion. I had all of these symptoms. They've become so normal for me that I didn't think of them as extraordinary.

Leg swelling had started in hospital after my very first surgery in 2015. My ankles had swollen to the size of my upper legs at one point due to the infusion of antibiotics. Dr. Gaviria changed them, they lowered the fluid infusions they thought were such a good idea, and eventually the swelling went back down again.

Tiredness was a given. I was sleep deprived because of this constant urination issue and never slept longer than perhaps an hour in one swoop. The only thing that did wake me up was a call to the bathroom.

But sometimes I would wake up in a panic. I knew my bladder was full, but I had no idea where I was or what I should do to alleviate the feeling. It's like I had forgotten how to urinate. Those were scary times!

It got so bad at one point that I decided to write a note to myself, in case I ever woke up in such a state again. Lying in bed wasn't working for me anymore, so I spent most nights sitting upright in a chair in our living room, usually with a urinal next to me. That note to myself helped.

It explained where I was, what I was experiencing, and what to do. If none of that made sense, it reminded me to wake up my wife and ask her for help. It sounds extremely silly, but it helped me. Just knowing that that note was there, and reading it every once in a while helped put my mind at ease.

I passed those nights by watching Netflix, Amazon Prime Video and YouTube. I had a lot of catching up to do on things like Breaking Bad, Bosch and several episodes of Derrick. Those rather surreal situations gave me something to do while I was unable to sleep.

* * * * *

Thankfully it never came to complete kidney failure in me, but I was certainly exhibiting signs that at one point, this might become an issue. My BUN levels were gradually climbing while I was on the TPN. The creatinine levels had been low and stable until about March, at which point they too started to increase.

Nevertheless, both those levels increased. Dr. Caso was concerned and recommended a kidney ultrasound procedure. It confirmed the findings of one of the many CT scans, namely that I had a condition known as hydroureter. It's a swelling of the pipe that connects your kidneys with the bladder. Urine is extracted from the blood one drop at a time, and each drop is diverted through the ureters and should - ideally - flow freely into the bladder. When that's full, we get the message to urinate and empty that internal reservoir.

Hydroureter means that the ureter itself is dilated, which is usually caused when urine can't pass through it easily. Pregnant women often get this condition due to the extra pressure the baby has on the abdomen.

It's nothing serious if it's mild to moderate, especially when the cause is known and the whole thing is explainable and/or temporary. But it certainly suggests that something isn't right, and when not seen to could eventually cause greater damage.

* * * * *

The real problem with any type of damage to the kidneys is that once the damage is done, there's nothing anyone can do to repair it. It can be slowed down, or doctors can make sure it doesn't get any worse, but once it's broken there ain't no fixing it.

Thankfully it never got to complete kidney failure in my case. There are several stages of kidney diseases, and it looks like I'm in the "moderate to mild" category. It means that my kidneys were once working much better, they're not burnt toast just yet. But it does mean that going forward I'm going to have to take extra special care of them, as Dr. Caso suggested.

Since I stopped treatment with heavy drugs, I no longer had any untoward connections to and from my bladder, and my GI tract has been whipped back into shape, the values are slowly normalising.

Speaking of values, if you're interested in gory details, I've posted some graphs of all my blood work over time on my website. Anything from GFR, BUN, creatinine, CEA, TSH levels - you name it, it's there.

Food, Glorious Food!

Believe it or not, but food (like Facebook) can act as a drug. In fact it's one of the toughest drugs to kick, because we can't live without it (I mean food, not Facebook).

Quitting alcohol, cigarettes or even heroine is tough for sure, not to mention the terrible side effects we have to endure when quitting such drugs. But imagine how much tougher it would be if you'd tell their respective users that it's imperative they take a small portion of the drug they're trying to quit every day, or else they'll die.

Imagine a smoker who is told he has to cut down from two packets a day to exactly three sticks. No more, no less. Or tell an alcoholic that he must have two small shots of that delicious single malt every day or else.

There's a beautiful scene in Aaron Sorkin's West Wing, in which the White House Chief of Staff, Leo, is trying to explain to somebody what it's like to be an addict. "Why don't you just have a single drink", the other person asks. And Leo says, "Because I'm an alcoholic".

The other guy can't quite believe what he is hearing, because for him (a non-alcoholic), not having another drink is really easy to do. So he keeps asking, "But why don't you just stop? Put the glass down and not have another?" - and again, Leo replies, "Because I'm an alcoholic".

* * * * *

To non-addicts, Leo's statement makes no sense at all, because they can naturally and instinctively do what Leo cannot: stop doing what they're doing and change their actions.

Non-addicts have a built-in mechanism that tells them when enough is enough. But addicts do not. With addicts, there are no boundaries, there's no perception if and when a line has been crossed, nor the awareness of lines or boundaries whatsoever in regards to their drug of choice (if you can call it a choice).

That's why addiction is often called a disease, because it stands to reason that addicts don't know how deal with a certain substance. They seemingly have no choice.

The trouble with addiction is that it's mainly a behavioural issue. Sure, substances like heroine and morphine have addictive properties that when withdrawn from will create bodily side effects, but the initial behaviour that leads addicts to using their substance of choice is a mental one; they have a craving to take it. It's never physical at first. Those side effects develop later if at all. Morphine for example is harmless when administered occasionally. So is cocaine. Or alcohol. Many of us drink, but most of us are not alcoholics.

With food it's very different because all of us eat. We have to, otherwise we don't survive. The big difference is that all of us (addicts and non-addicts) can survive without (major) issues if we leave any other drug behind. Contrary to popular belief, a life without Facebook or the in fact the whole of the internet is perfectly possible - our ancestors are proof of that.

I'm making such a big thing out of food being a drug here because - you've guessed it - I have a serious issue with it. Or, more precisely, I have a behavioural issue around food. It's also known as an eating disorder.

* * * * *

Often associated with supermodels and people in the public eye, eating disorders have a wide range of characteristics. There's anorexia (the desire to eat nothing or extremely little), as well as compulsive overeating, but there's also everything in between and combinations thereof.

Some addicts eat moderate or vast amounts, only to make themselves throw up so the food can't be digested. Others only chew their food and instead spit it out without swallowing it. These examples illustrate very well that an eating disorder is a behavioural issue rather than related to the addictive properties of the substance itself.

I'm telling you all this in preparation for the next chapter about artificial nutrition, because it will illustrate the context in which I have received it, and how I perceived the consequences of that treatment.

* * * * *

The reasons behind people developing eating disorders are manifold. It could be as simple as those little messages you received as a child. You know, when apparently the sun won't come out tomorrow, should you dare not to finish all your vegetables. Perhaps there were serious threats made against you in case you didn't clear your plate.

Those messages are really tough for kids, because when you're little, you believe anything your parents tell you. That's why it comes as such a shock when kids find out that what parents have told them wasn't always exactly true. Remember the whole Santa Claus thing? Yeah. That was a tough one, among many others.

I'm not suggesting that everyone who regularly clears their plate because it's considered "good manners" has an eating disorder. If you're really hungry, by all means, clear your plate and have seconds, perhaps even have a dessert afterwards.

But if you clear your plate with every meal you have, and never check in with how you feel about it, ask yourselves this: Who is the only person who could possibly tell you when you're full? Is it

a.) The chef in the kitchen of a restaurant, a person whom you've never met,

or is it

b.) your own body?

Provocative question, I know. Here's another one: Who can tell you when you're hungry? Is it

a.) a notification from your nearest fast food restaurant,

or is it

b.) your own body?

I guess the answer to both questions is obvious (in case you didn't guess it, it was b by the way).

It illustrates nicely how an eating disorder works. Your body sends a message to the brain (either "I'm hungry" or "I'm full"), and you as the almighty in-charge person of your whole body can make an educated decision about how to act on this message.

You can choose to eat right away, you can choose what to eat, you can postpone eating until later, you can stop eating, you can eat some more, it's all up to you.

If you receive that message.

If you hear that message.

If you understand that message.

If you don't receive that message, or you can't hear it, or you hear something that you don't understand, then you cannot act upon it.

And that's the behavioural disorder right there.

Sadly bodily messages such as the above are not like pop-ups and notifications on your mobile phone. They don't have a scale of green to red attached, by which you can easily see how urgent it is to act on them. Bodily messages are more subtle. You have to really be in touch with yourself to listen to, hear and understand what is being communicated.

For many of us this is a fully automated process, so automatic and ingrained in fact that we're often not aware of this process at all. We know when we need to go to the bathroom or when we need to go to sleep, and we act accordingly. If we wouldn't, we'd end up with wet pants or fall asleep in front of the TV (or both).

At the same time, with hectic jobs and family lives, we're also masters of ignoring our own needs and pushing through them regardless of the consequences.

Thirst is a good example. Fun Fact: Did you know that when you feel thirsty, you're already dehydrated? Apparently so. Which begs the question, is our body so badly misconstructed that a simple message like "must have water" can get lost in the system and be delayed several hours? What's the hold-up? Why didn't we get it earlier?

Is it that we're used to being so out of touch with ourselves that we don't know what the real message for "must have water" sounds like anymore?

It's a tough one.

Try this if you will: drink one glass of water every hour throughout the day. A small 8oz glass should do nicely (that's 250ml). Feel free to spread it out, you don't have to gulp the whole thing down on the hour. Try to keep this up for at least 8 hours, with one glass of water per hour. Do it longer if you want. If you keep forgetting, set an alarm to remind you. There are even apps that will help you do this.

After only a short while, in less than a week, perhaps even quicker, you'll notice that your body will ask more clearly for that glass of water. You'll start feeling more thirsty than when you drank less water less frequently. Try it!

So what happened there? Are we suddenly more thirsty than before? Has something changed about our body? I'm not a medical professional, so I can't tell you for sure - but I wager that our body has not changed at all. The only thing that probably has changed for us is the perception as to what "thirsty" means for us. We hear the message more clearly, perhaps earlier.

What I find fascinating about this exercise are two things: one is how quickly we can bring this change on, and what little effort it takes. We don't have to invest years of training, we can do it casually and within only a few days. For some of us it might even happen quicker, for others it may take a little longer.

The other thing, which is even more fascinating and more important, is that we CAN bring on such a change. We have the power to bring on a change in our own perception. We're not stuck with an uncorrectable fault. It might take work, sure; but it's not impossible to tune into the right frequencies. All it takes is a little practice.

* * * * *

My own relationship with food was a rather hairy one at the best of times. I can't even remember when it went off the rails exactly. The earliest memory I have of some disconnection between "real hunger" and "ingesting food" was when I was little. We're talking about a time before I went to primary school here, aged perhaps four or five.

My Dad used to work late in those days and came home way past my bedtime. I hardly ever spent time with my parents during the week, especially not with my Dad. We never had the all-important "family time" together, except for a few hours every other weekend from what I can remember.

My Mum used to make some dinner for my Dad at a late hour when he came home, and because it was the seventies, he chose to eat it in front of the TV. When my Dad opened the front door, no matter how careful he was, it woke me up. And because I was excited about the idea of spending some time with my parents, I got out of bed and made up an excuse that would warrant me being in the living room together with them: I told my Mum that I was hungry.

It was a perfect plan, and it worked every time without fail. I was allowed to stay up for an extra half hour, spent time with my parents and have some dinner, whatever it was that she had prepared for my Dad. As a bonus, I even got to watch some late night TV, the totally "unsuitable for children" stuff, commonly referred to as watershed. Fantastic!

Sadly, during those impromptu family meetings, nobody ever spoke. I guess my Dad was exhausted and perhaps the last thing he wanted to do was spend time with his kid. My Mum didn't speak much either. She was perhaps a little pissed off about the fact that I had - yet again - managed to sneak into the living room under some pretence.

On the surface, my plan seemed to work brilliantly - but at the same time, it didn't satisfy the need I had. So really, it didn't work at all. The price I'd have to pay for my wanting to spend some social time with my parents was a dissociative relationship between emotional belonging and ingesting food. That part of my life has since then been right royally screwed up.

* * * * *

Years later, when I was maybe seven or eight years old, I found a brochure form our family doctor. It was entitled "Your Mega Fat Child" or something along those lines, with an appropriate neon orange fat font on an otherwise dark green cover. It indicated that my parents knew there was an issue of sorts, but nobody (including our family doctor at the time) had any idea what it was or how to fix it.

* * * * *

The thing with eating disorders is that there are often no visible signs, like there are with other addictions. Cocaine addicts may sniff a lot, while alcoholics may have BBP (that's booze breath phenomenon). Facebook addicts can barely look you in the eye, because it would mean looking away from their mobile phones for two seconds, and so forth.

People with an eating disorder look like very normal people on the surface (but then again so do serial killers). The warning signs aren't so obvious - unless you know what to look for.

Body weight is certainly one thing, when people are either extremely thin and malnourished or overweight. That could be said for many people who do not have an eating disorder. Sudden weight changes are also something to look out for.

Other behavioural signs are weird eating habits, such as declining to eat with others or in public, reddened eyes after a lengthy barfing session on the bathroom, and bad teeth due to regurgitated stomach acid.

* * * * *

I went through phases of both extremes, and I know what it's like to be anorexic as well as being a compulsive overeater. Thankfully I really detest throwing up, so I've never had an issue with that part of anorexia.

During most of my school career (if you can call it a career), I was the proverbial fat kid. There were only few people who were fatter than I was. I clearly ate too much and had no idea when to stop or knew why I should.

Indulging on food was like spending quality time with myself. No matter if the day was good or bad, if I was happy or depressed, food was there for me. It was like being in the company of good friends. As Eric Cartman said, in the South Park episode Fat Camp, "Mr. Chocolate Bar doesn't judge you".

That's a very important point: food never told me off for anything I did, never rejected me and was always available to spend time with me. Exactly the kind of relationship I was expecting from a close friend.

However, much like my earlier childhood experience with the "sneaking into the living room" phase, food was obviously not the solution to whatever I was seeking.

When I moved to Berlin in 1991 to start my apprenticeship in the film lab, my body weight must have been close to 300lb. All I remember is a scale showing me a weight in excess of 130kg. Shortly after my arrival, something remarkable happened that would change the relationship I had with food by necessity rather than choice.

My salary as an apprentice was low, around DM 500 or so, which in today's money is about GBP £150 or just under US $200. It was enough for me to rent a small studio apartment, not too far away from the film lab I was working at.

My parents had split up several years earlier, and at the custody hearing it was decided that I would stay with my Mum, while my Dad would move in permanently with his girlfriend. We were all happy with the solution.

It was also decided that both parents were responsible for supporting me financially, until my education was complete and I could earn a living myself. As my Dad's job was more lucrative, and because he never did much else for me, they both decided that he was going to support me on his own. That would leave my Mum some financial breathing space.

The deal was that my Dad was going to send me DM 500 per month, which in addition to my apprentice salary would cover my living in Berlin. And it worked... for six months or so, until he decided not to send me money anymore.

Don't get me wrong, I'm not blaming my Dad for anything - I'm sure he didn't do this by choice and probably had Joey and the kneecap breakers after him, otherwise he would have stuck to the agreement.

Sometimes, I would not get a cent from him. And then a month of so later, he would send me back payment for the last three months or however much he owed, which indicates that he had his own financial issues back then.

For me as a young adult it meant that - once the overdraft at the bank was at its limits - I had to cut down on what I spent. Which was really only rent and food, because there wasn't enough money left over for anything else.

I had made the conscious decision early on that I was never going to fall behind on my rent. Having a place to live was and still is more important to me than anything else, so I made sure I always had enough to pay that. It worked great, because my salary essentially covered my rent.

What I didn't have was money for was food. In my simplistic young mind there was an easy solution to the puzzle: keep paying the rent, but stop spending money on food. Any food. And just like that, I made the decision not to eat anymore. It felt fantastic!

I still joined my colleagues for breaks at breakfast and lunch, but all I chose to have was a cup of black coffee on both occasions.

Lack of funds was one reason for my choice of behaviour, but another were my ever so slightly working class colleagues. You see, I was a young, extremely bright and overweight guy, who didn't shy away from hard work. It came easy to me and I enjoyed it. As such, I stuck out from the crowd of the other apprentices, who may also have been ever so slightly working class.

Most of my full-time colleagues had been working at the film lab for 20 years or longer and were originally hired as unskilled workers. They made good money and enjoyed privileges.

Naturally they saw me as a bit of threat: here's this guy who works for peanuts, comes in out of nowhere, works about 5 times harder than most of the employees, and to top it all off, everyone could see that film was on its way out.

I would't say my colleagues bullied me, but they did like cracking the odd joke about my weight here and there. Since they couldn't attack me on any of the other fronts (i.e. age, knowledge, work ethics, intelligence), I decided to take away the one thing they were honing in on. Being the silent fighter that I've always been, I thought, "in your face, Pork Pie Head!"

* * * * *

Over a period of about 6 months without food, I lost about half my body weight. Apart from black coffee twice a day, the only luxury item I had was sugar free mints (because my breath was seriously lethal).

As I would later find out, my eating disorder was turning from compulsive overeating to anorexia. Although you could regard one as the opposite of the other, I felt they were very closely related.

Both behaviours have to do with going into some kind of survival mode and very strongly disconnected my mind from my body. I was unconsciously suppressing the very natural urges we all should get, such as feeling hungry or feeling full. I simply couldn't feel either of them.

I took anorexia to the next level by not only staying away from food; I also made sure I hardly ever used the elevator and climbed several flights of stairs instead, and on any occasion I could. In the summer I even enjoyed walking home after work, a distance of five miles instead of catching the bus.

Deliberately exhausting myself started to feel great, no matter what the cost would be. From what I understand, a combination of dopamine and endorphins were responsible for my enhanced wellbeing experience.

As sick as this sounds, losing weight was good for me. Even better was that my colleagues didn't notice it at first. That's how I liked it. I really didn't enjoy talking about the whole subject, nor did I know what to say about it at the time. I wasn't even aware this was an eating disorder. I could tell I wasn't like the rest of humanity, but I had no idea of how serious my condition was.

Still suffering from lack of funds, another thing I didn't do was buy new clothes. I was still wearing my fat clothes. It must have looked ridiculous, but because most of us were wearing white lab coats like a uniform, it wasn't very noticeable.

I didn't have a bathroom scale at home, nor did I have access to one. The one thing I did on occasion was to step on a big industrial scale they had at the film lab. We used it to measure huge sacks of chemicals that made up film developer and related baths. My lowest at one time was 72 kg (just under 160lb), including my clothing and lab coat mind you.

I'm not trying to make it sound like this was a completely heroic tale of weight loss though, quite the opposite. And as you can perhaps imagine there were serious side effects too, when I was exhibiting signs of severe malnutrition.

For example, my teeth started to go bad. I had never had a single cavity up until then, but with the lack of... well... everything in my diet, how is the body going to repair things that need repairing? I also noticed my fingernails getting brittle and exhibiting little white spots. All of that was nothing compared to the mental state I was in.

As my salary went up every year, I gradually started eating again. Eventually my Dad got his act together and started paying again too. Not that he ever paid as much as he technically owed me, but little bits of cash started appearing on my account.

When I did eat, I only did so in the evenings. I kept my Black Coffee Diet up during the day. As a result, both my mental state and my body weight stabilised.

Eating still wasn't the pleasure I had once remembered it to be. I either over-ate, understandably considering how much I had deprived myself of food, or I ate dangerously little. I remember sessions of coming home and having a cup of black coffee, together with five Mars bars. Or eating half a water melon.

As I said, with an eating disorder there's no bodily feedback that would send a message along the lines of "are you crazy" - otherwise, behaviour like I have exhibited simply wouldn't happen.

Fun Fact: Mars Bars are actually called Milky Way bars in the US. On the other hand, Milky Way bars in Europe and the UK lack the caramel layer on the top, and are comparable to 3 Musketeers bars (which are confusingly also made by Mars).

* * * * *

An eating disorder is a condition you'll have for life. Like the fear of public speaking or the fear of flying, it'll never go away. All you can do is to live with it, and learn how to handle it. I have learnt how to do just that. Although my weight was relatively stable for a while, I gradually reached 100 kg (220 lb) again over the following ten years.

I discussed my behaviour around food with my therapist Jerry Hyde. Food was not the main reason why I sought professional help in early 2000, but we did naturally touch on this sensitive topic.

Jerry made a fascinating observation. He suggested that I was using food like it was a drug. I had never seen it like that before. Think about it: if we have a headache, we pop a pill to make it go away. And that's exactly how I was using food: feel depressed, order pizza. Rinse and repeat.

Food seemingly made my dark moods go away, or at least I thought it did, while occupying myself with something else. Which - looking at how this whole disaster may have started when I was a wee lad - makes perfect sense to me today.

But here's the good news: as soon as I became aware of this process, as soon as I realised that this behaviour was not working, and didn't actually cure depression, I was able to change my behaviour.

That was a big breakthrough for me. I remember thinking, "What's the point of ordering pizza? It won't solve the problem" - and that valuable insight allowed me to break the addictive pattern.

* * * * *

Right. Now that I've successfully dragged the mood down to Basement Level 2, let's turn our attention to more cheerful things, like artificial nutrition. Excuse me for this rather painful trip down memory lane, but it provides a valuable backdrop for a similar situation during my cancer journey - coming up next.

It also illustrates that I'm no stranger to surviving dire situations.

TPN

The TPN was an interesting one. It solved so many issues with my otherwise totally screwed up GI tract, but it came with a price tag. Not a financial one, but a mental one.

I lived with this form of artificial nutrition for the better part of a year, from January to October 2017. That's a long time. Living without solid food presents difficult challenges, and having an ever so slightly charged relationship with this topic, I must admit this wasn't a walk in the park.

But, like many other obstacles on this journey, I survived this one too. It wasn't easy, but if I think about the positive effects it had on me, I'm glad I had this experience.

I'll tell you all about my life on TPN in this chapter. Here's anything and everything from technical, organisational and mental challenges this thing presented to me.

* * * * *

So eating food wasn't working for me anymore. Not only was it psychologically distressing to think that my GI tract was processing food through my bladder; it was also uncomfortable and painful. Urinating was far from being the relieving pleasure it once had been.

In fact, by this point it was so long ago I couldn't even remember it ever being a pleasure. These days, I was thinking of urination as a very stressful experience, and I always wondered what nasty surprises my body would come up with next.

Consequently not eating anymore sounded like a great option. Before Dr. Cusnir came up with the suggestion of giving me a TPN, I had volunteered to go on what's known as a clear liquid diet. I had been on it before, and it's a great way to give your bowels the rest they deserve on occasion.

A clear liquid diet means you only drink - as the name suggests - transparent liquids. This means substances like clear juices, sorbet, tea and coffee (without milk or cream), sodas and hydration drinks, even clear broth. Anything that can be absorbed by the body without leaving behind indigestible material.

It worked fine to provide hydration and some energy, but I could tell that ingesting anything including plain water was not a comfortable experience for me anymore. I felt constantly bloated and just not comfortable.

The TPN changed all that. Not only was it providing adequate nutrients and calories; it also gave me all the fluids that I needed. All the while my whole GI tract could take a break and focus on healing without food disturbing any part of the delicate (and currently very screwed up) system.

There are two main types of TPN: one is administered continuously throughout the day, while another one lets you take breaks. The latter is called a cyclic TPN (because there are "on" and "off" cycles).

I had both types. While I was in hospital, I was connected to a huge bag of yellowish liquid that was slowly dripping into me through my access port. The bag contained a mixture of saline solution, vitamins, protein and glucose. I would only be disconnected from it when any other medication was to be administered intravenously.

When the nurse put my TPN on for the first time, I didn't notice anything special. My wellbeing was severely compromised anyway, so recognising what medication had what effect on me was very difficult at best. On subsequent connections, I remember feeling a little sleepy when the infusion first started. After half an hour or so this feeling would subside.

Later on, when we started administering the cyclic TPN at home, this effect was more pronounced. Thankfully I had access to my great nutritionist Julie, with whom I could discuss such observations.

Julie explained that this effect may be happening due to the amount of glucose (i.e. sugar) was being pumped into the blood stream. Usually when we eat, and sugar naturally enters our bloodstream, it isn't switched on like a light bulb. The rise in glucose levels is gradual, allowing our body to produce insulin so that the levels can be kept at an even keel.

The TPN however is more or less like an on/off switch, elevating the glucose levels the moment you connect it. As a result, my sugar levels were getting a little too high for comfort until my body had a chance to produce enough insulin to counter the effects. So the sleepiness I was observing could be described as the onset of a light sugar coma, also known as Hyperglycemia.

Fun Fact: The word "hyper" in any such terminology means "over"; as opposed to "hypo", which means "under". In the above example, Hyperglycemia means literally "too much sugar syndrome". The opposite of that would be Hypoglycemia, which would mean "under sugar syndrome", describing sugar levels that are too low.

Try those prefixes with other medical terminology, such as "thyroidism" and "thermia". It works a treat and follows the same pattern.

* * * * *

I remember that when the TPN started being regularly administered in the hospital, Hyperglycemia was one of the things my doctor was checking. As it turns out, not every patient tolerates a standard TPN equally well, and sometimes additional insulin needs to be administered.

Stopping the TPN has an equally odd effect. Thankfully I never had to experience it. The immediate withdrawal of gradual glucose injections can lead to too much insulin in the blood, before the body has a chance to stop its production. From what I understand, this effect is much rarer though.

An alternative approach of dealing with both of these nasty side effects is something called "wean on" and "wean off". This means that when the TPN is connected, the administering pump does not start with a constant flow rate. Instead the flow rate is gradually increased at the beginning, and decreased again at the end of the infusion. As a result, your body can cope better with either scenario.

When we started using the TPN at home, the effects of Hyperglycemia were more noticeable for me. It makes sense too, because with a cyclic TPN, the flow rate is almost doubled compared to the regular one I was getting in hospital. At the same time, the sugar content is the same, so at home I was getting twice the sugar whack when the infusion started.

It was a weird feeling. The description "feeling sleepy" doesn't really do it justice. It's more like my consciousness was starting to slip away for no apparent reason, while I was fighting to stay with it. I kept imagining being in a car crash, and some stranger keeps slapping my face saying, "Stay with us, Jay, don't fall asleep".

I'm sure we could have solved this problem by adding a wean-on and wean-off setting to the infusion pump, but as it turns out this wasn't necessary. When I mentioned my experiences to Julie, she had a fantastic tip that would forever get rid of that comatose feeling.

Julie suggested to have something sugary before starting the TPN. The idea was that my body could react to the added natural glucose, increase insulin production, and when the TPN would kick in, it could be adjusted easier.

So from then on, when either Julia or I were preparing the infusion, I'd grab a glass of juice or soda, perhaps half an hour before we attached the TPN.

What can I tell you? It worked brilliantly. I didn't notice the sugar, even though it felt weird to have a can of Mountain Dew or Fanta for medical reasons, it did the trick. I didn't notice the effects of the soda, nor did I feel any different when the TPN pump started doing its job.

* * * * *

To monitor how my body was reacting to the TPN, I had a weekly check-in call with a pharmacist, Armando Riggi, or when he was on vacation, his colleague Yomira. He was mixing the seven weekly bags I got delivered.

Armando was checking how I felt with the current mixture, how my body weight was doing and of course how I was feeling. Anything out of the ordinary could be addressed, and after checking with Dr. Cusnir, added or removed from the mix.

I had a routine blood test at the hospital every week anyway, so that all doctors involved could monitor my condition. It was really quick and harmless too, thanks to my subcutaneous access port in my right shoulder, which was flushed on this occasion too.

Armando got a copy of the results, so if he noticed that my electrolyte or lipid levels weren't up to scratch, there was always something he could do.

Working like we did was another example of great team spirit: Armando would check with me first, then he'd make recommendations and discuss them with both Dr. Cusnir and sometimes with Julie. If all four of us were happy, he'd go ahead and tweak the TPN.

* * * * *

Some patients cannot use their GI tract at all. They have to rely solely on the TPN to provide everything the body needs for survival. This includes all nutrients and vitamins, but also liquid.

I was lucky that I could technically still use my GI tract. Ingesting food wouldn't have killed me, but it would have certainly caused great discomfort and infect me again. I stayed well clear of solid food.

But clear liquids were being metabolised fine, including the occasional dairy product. This was a nice treat because I could look after my own hydration. It meant I could have plenty of water, electrolyte drinks, sodas and coffee. I could even have things like gummy bears, Jell-O, protein shakes and some types of ice cream. And to squash cravings for salty snacks, I could have clear broth. Basically anything that didn't have bits in it and was completely soluble in water.

So what we did was to put me on a very basic TPN, and use what was still working in my GI tract to add some nutrients that way, such as additional protein and water.

That was an important factor in surviving my TPN days mentally: I didn't have to live without ingesting anything through my mouth.

At least half of everything I ingested would still travel through my small intestine and was syphoned off into my bladder prematurely, so certain things didn't work well for me. I never found out the exact ingredients that would cause problems, but I could tell my body wasn't happy with certain products.

Cheap ice cream for example, the "bottom of the biscuit barrel" type stuff, like Breyer's. I can still feel my urethra burning when I think about it. Häagen-Dazs plain vanilla on the other hand worked just fine.

Likewise, those energy drinks (Boost and Ensure) that had been doing me such a good service before were now causing severe burning. Other milk and cream based products were causing no harm. Go figure.

* * * * *

When I started on TPN, the complete withdrawal of food was difficult. Even though it made perfect sense, and it was the logical decision to make, humans have urges. The craving for food is one of them.

Having an eating disorder takes this to the next level of course. It's like choosing the "insane" difficulty level in your favourite video game, the one after "difficult" and "extra hard".

I remember starting to research restaurants before I was discharged from hospital, some as far as my home town in Bremen, venues that I never had a chance to visit. Others included exotic and historic burger bars in Ohio and Las Vegas. I remember thinking we should do a burger tour across the US.

That was weird, because I had no desire to eat any of the food I was looking at. My body would always decline food offers, be that on the screen of my mobile phone, or when the nurse brought it in three times a day. I've never felt such a strong disconnect between my mind and my body.

While my body was saying, "food is the last thing I can deal with now", my mind was thinking of little else. It was like I was caught in the middle between two rather strong forces, having to listen to two parties discussing their wishes.

Thankfully I never felt hunger. That's a huge issue for other TPN users from what I understand. Although the TPN is taking care of everything the body needs, some users experience the usual stomach grumbling, or gili-gulu as they say in Japan.

I never had that starving feeling, accompanied by those interesting noises in the abdomen. I guess what helped was that my sugar levels were being kept at a very stable rate. It's something so ideal, it would never happen in nature otherwise.

Think about it: when we eat, our glucose levels rise. There's spikes to deal with and to even out. That's followed by spikes the other way, when we exercise, then all of a sudden reserves have to be mobilised. It's a constant "reaction to change" mechanism that our bodies have to cope with.

But with a TPN, you flick a switch, and for so many hours those levels are kept stable. I'm no medical expert, but I can imagine this to be a very healthy and relaxing state for the whole body. Keeping things at an even keel, the beautiful flat line with no ups or downs.

What I did get from time-to-time, especially in the beginning of the TPN were cravings for smell and taste of food. Again on a very body/mind disconnected level. It's comparable with the feeling that you get when the body is missing a certain element, and without exactly telling you what it is, it's asking for a food that contains it.

There were times when I ordered pizza, my old standby cure against depression. I had no intention of eating it; smelling it was enough. Sometimes I'd take a bite to satisfy the craving for taste, but I could never bring myself to swallow any of it. As I said, weird times.

Then of course there was the whole mental aspect to ordering pizza too: picking a venue, deciding on a deal and configuration, making the transaction, and receiving the delivery.

The last thing I wanted was to fall back into my old habits and re-connect with crazy eating patterns, or other screwed-up behaviour around food. I wanted to avoid exactly what I was doing.

I think I got away with it: realising that it just wasn't working, while observing my own behaviour without judging it, I didn't do this for long. I guess it was the first month of being confronted with a new situation that made me try out different behaviours in a rather extreme situation.

Eventually, and as my bodily condition got better, I settled for Cool Lime Refreshers and Cold Brew coffee from Starbuck's, and plenty of water. As time went on in my adventures in TPN land, I focused on drinks of all kinds. I even tried non-alcoholic beer, which was working great. I remember Karen suggesting that I could probably drink regular beer too, and I quite agreed. I never tired it out though. I had given up alcohol altogether when my treatment started and have never missed it since.

I had a similar discussion with my Mum around this time, and she was very encouraging for me to have alcoholic beverages. She wondered why I had decided against alcohol, even though my treatment would allow it.

I couldn't really explain my reasons; all I could think of was that my remaining time on the planet is rather precious, and the last thing I intend to do is waste it away with a blurred state of mind and headaches.

Immunotherapy

We had managed to find two solutions to the larger puzzle: taking control of the infection, and making sure it couldn't flare up again.

When I say "we", I don't mean just Julia and myself; I mean "us" as in everyone who was involved in making me feel better. This was an ideal scenario of the team effort I described earlier, in which doctors and patients work together towards a greater goal.

We had all been through a lot, and I felt we had grown into a "crack team" by now. This included Dr. Cusnir, Dr. Stephenson, Dr. Kuritzky, Dr. Caso, Dr. Szomstein, all my nurses, infusion room interns, receptionists, drivers, literally anyone who was involved in my case. On top of this there were prayers and love from everyone along the way. They reminded me to keep strong, have faith and believe I would get better.

Despite so many complications and setbacks, I felt everyone involved was pulling in the right direction. Everyone knew us, and we knew everyone. Many of my team, those who didn't know I had been in hospital, had commented on how they'd missed me. That's awfully nice to hear if you're in the dumps!

But the fight was far from over. We still had the worst enemy to deal with, one for whom we hadn't quite found a match yet. That super aggressive K-RAS-mutated evil MSH-2 high super cancer that was growing in me, and it was taking over what was left of my abdomen.

By February 2017 I still had my walking stick, without which I wasn't able to do much walking anymore at all. I could just about make it to the bathroom and back, and it felt like I had to do that several hundred times a day (this number might have been slightly exaggerated by my mind in retrospect).

Time was of the essence. With no surgical option on the horizon to cure me, and the chemotherapy treatments obviously not working, my cancer currently had free reign over my body. It was only a matter of time until it was starting to invade more vital organs. It had to be stopped at all cost, and fast.

It was time to get me that holy grail of cancer treatment; the one that everyone and their dog was raving about; the one that was apparently performing miracles for some patients, especially those with aggressively mutated super cancer like the one I had; the treatment Dr. Kuritzky had spoken of at our first meeting; the super expensive stuff they call immunotherapy.

* * * * *

Thankfully our insurance had already approved the treatment. This news reached us by email from Karen while we were still in hospital and waiting for the discharge papers.

Within days of our release, we were lucky to get an appointment with Dr. Cusnir. There were no further tests that had to be done, everything was ready to go - as long as I could drag my limp excuse of a human body over to Mount Sinai on Miami Beach.

Although I could just about walk with my cane, covering the vast distances of the long and daunting hospital corridors was not easy. In fact, it got to a point where it was impossible for me to simply get out of the car, chat with Adesta at the downstairs reception, drag myself up to the elevator, travel to the third floor, speak to Adela on the upstairs reception to get checked in, and walk right into the treatment room. Like I had done about a hundred times before.

These days I had to sit down before going from one stage to the next, preferably via the bathroom, because standing up always managed to squeeze out whatever stomach and intestinal secretions there were into my bladder.

Seeing me in this condition, Julia decided that the best way for me to travel while in hospital was by using a wheelchair.

It was an ingenious idea. I was so sleep deprived that it never occurred to me. Hospitals are used to people in wheelchairs, and thankfully there was one usually available for occasional use at the downstairs reception.

From now on, Julia requisitioned one whenever we were at Mount Sinai. That was another great solution to an otherwise seemingly unsolvable puzzle. It's those little things that keep your mind occupied: How am I going to accomplish the simplest tasks, the ones I used to be able to do on my own, the ones that are now impossible? How am I going to get from A to B if I don't know how?

With a simple solution like a cane and a wheelchair, those thoughts just drifted away. It was one less thing to worry about, and it was another triumph for me in the eternal fight against my Bullshit Brain.

At the same time, travelling by cane and wheelchair also drove home the dreadful reality of how ill I actually was. This wasn't a casual affair anymore. I felt as if I spent more time at the hospital than at home. Or I was travelling to or from the hospital. When I was at home, I was mentally preparing for another appointment at the hospital. In my "spare time", I was now severely limited when it came to bathroom visits and mobility.

Would the this nightmare ever end?

* * * * *

Dr. Cusnir had a plan. Like pretty much every option for cancer treatment, we had to try it out and see how it worked. If it was going to be successful or not wouldn't be immediately obvious. Every treatment needs some time to act, and during that time, all you can do is wait and see.

His plan was to give me a medication called Pembrolizumab. It was at the time made only by a single large pharmaceutical company named Merck, who sold it under the more memorable name Keytruda. A single infusion was to cost about $10,000, and we'd need several of those to turn my life around.

The drug was initially designed to treat malignant melanoma, a type of skin cancer that can develop from pigmented cells of our skin. Invented in 2006, it was approved by the FDA for such treatment in the US in September 2014. In Europe, Keytruda has been approved since July 2015.

Shortly after its approval for use against melanoma, Merck had found several other uses for the drug. Apparently this stuff was successfully helping humans fight all kinds of other cancer, one of which was cancer caused by DNA mismatch repair deficiencies. That's what I had! And it's exactly what renders my type of cancer immune to conventional chemotherapy treatment.

Eventually, in May 2017, Keytruda was fast-track approved for such use by the FDA. However, I needed this stuff right away, in February 2017. I wasn't sure I could survive without irreparable damages for another three months.

Immunotherapy works very differently to the chemotherapy I had been given before. Chemotherapy prevents certain cells in our body from duplicating and renewing. The idea is that the rest of your body (barely) stays alive during this process, while cancer cells hopefully do not survive or are at least stopped from further invading healthy tissue.

Technically, chemotherapy doesn't actually kill cancer cells. It tries to prevent cell renewal, specifically those that tend to divide faster than regular cells. Which is why side effects are delayed.

Immunotherapy on the other hand helps your body's own defences to detect and attack the cancer cells.

As I understand it, our bodies can't differentiate evil cancer cells from the good healthy ones. Evil cells, for example those that are responsible for the common cold, can eventually be identified and attacked by the immune system.

But cancer cells look like "the good guys". You could say they're wearing a mask. It's like presenting a fake ID when you cross the border, and the guards wave you through, believing your ID to be genuine. They can't see you as a fake.

There are various types of immunotherapy, and from what I understand they fall into two categories: those that increase responses of our immune system, and those that suppress it. Different rules for different situations I guess.

Keytruda in particular is one of those that cranks up the immune system, using monoclonal antibodies to achieve what Paul Erhlich termed the "magic bullet" effect. From what I gather, Keytruda destroys a protective layer around cancer cells. Without that layer, our immune system can identify the cancer cells and detect them as evil. Then it's simply a matter of attacking and eradicating them, something our immune system is particularly good at.

In other words, immunotherapy switches the regular human defence system into overdrive. Since it works so well against many illnesses that never get a chance to break out, why not use it against something as nasty as cancer too. All it needs is a little help to highlight who the bad guys are.

As a result, immunotherapy should have little to no side effects on the rest of our bodies - unlike chemotherapy, whose side effects are both manifold and terrible on so many levels.

* * * * *

My Keytruda infusions came in a small 250 ml bag of saline solution, which was administered in the regular infusion suite at Mount Sinai over only half an hour. Nothing else was needed in addition to a single small bag.

Compare that to a chemotherapy infusion of either Oxaliplatin or Irenotecan, either of which take a total of three hours plus wait time for delivery and changeover, not to mention the 46 hours of mobile pump injections afterwards. Either regimen not only consisted of the actual chemotherapy medication, but required other components such as steroids and anti-barf meds to make the poison work more effectively.

None of that was needed with Keytruda.

Dr. Cusnir's plan was to give me the drug every three weeks, with weekly blood tests and dressing changes for the port access once every Wednesday. All we had to do then was wait and see if it worked.

* * * * *

Apart from Keytruda, or Pembrolizumab as it's also known as, there are several other immunotherapy drugs made by other companies, such as Opdivo (or Nivolumab) and Yervoy (Ipilimumab). From what I understand, those work against varieties of cancers, some of which are breast cancer, lung cancer, melanoma, renal cell carcinoma, prostate and even bladder cancer.

This means there's hope for many other types of cancer to be treated with immunotherapy. I have no doubt that eventually oncologists will have several drugs to choose from and administer what works best for each individual patient.

Most medications have two names: one rather complicated and slightly unpronounceable, the other catchy and memorable. There's a reason for that: When drugs are first discovered, they're given a medical name that often describes their molecular or atomic structure.

For example, with our old friend Paracetamol (or Acetaminophen), the medical name is "N-acetyl-para-aminophenol". While that's handy for scientists, it doesn't help the rest of us humans much. Even for those learned people this is often too complicated, which is why drugs are also given a shorthand designation, such as MK-3475. Think of those as "internal office use".

When a drug is approved, it is given a more memorable "official" name at that point, such as Pembrolizumab, the immunotherapy drug that saved my life. This is also known as the "generic" name. Every pharmaceutical company that has a license to manufacture this patented little miracle can go ahead and do so, at which point they may come up with an even more catchy title.

This name is often trademarked, given a logo and a branding, and the next thing you know is that you see it on TV, by which point we all remember "Tylenol" rather than Acetaminophen or Paracetamol. Because several companies could be manufacturing the same drug, we may end up with several of those catchy trademarked and branded products.

And that's why there are so many names for drugs.

Out of all the complex immunotherapy drug names, Keytruda has to be my favourite. For me personally, it has the "key" to success in its name. I do admit that the other ones sound very catchy too though. I wonder who comes up with those names. Is there a job like "brand name inventor"? Is it a computer algorithm that generates phrases with 4 vowels and three syllables? Have they all been pre-defined decades ago or is there a book from which these companies pick the next one on the list?

All I knew was: this treatment was my last and only option. I wasn't ready to see the words Game Over. There would be no option to 'Try That Level Again'.

After I had been given my first dose of Keytruda, we had to wait and see if it was working. I remember Karen saying not to worry if I didn't feel anything happen straight away. She joked, "We are giving you the real medication so don't think it's not working". My job during this time was to hang in there and not lose hope. I have to be brutally honest when I say that this was not an easy job. I felt I had been at this point several times already, and nothing had worked. Even if things were looking up for a while, my cancer had this knack of turning the tables and making my life terrible again.

It was vital not to lose hope at this point, specifically because the idea of immunotherapy made so much sense to me. I spoke to so many people over the years, who had some form of chemotherapy - with every cancer imaginable. Breast cancer, bone cancer, testicular cancer, prostate cancer, bladder cancer, brain cancer, leukaemia. You name it, there's a chemo treatment for everything.

And sometimes it works. For a while. I've seen so many cases in which sooner or later, the cancer just comes back, and that really shattered my confidence in chemotherapy. To me it was as if it's a good idea on paper, and perhaps the only way for humanity at this point in time to fight cancer of all kinds - but it wasn't a golden ticket for survival.

I had seen too many people die despite chemo treatment, especially in my own family. But I had also met survivors, those for whom chemotherapy did work. Sadly there were a great many of them who would sooner or later be touched by cancer again many years later.

I had also seen how hard the medical and pharmaceutical industry was working on finding better treatment against cancer. The research had never stopped, and huge improvements had been made decade after decade. When I first read about the drastically different approach that immunotherapy could bring to the table, I was sold on the idea immediately. The principle was just so much better than what chemotherapy had to offer.

What scientists have found out about cancer is fascinating. It turns out there's not one type of colon cancer for example; it's similar to what we know about viruses. There are many different strands, with many mutations and sub-groups, and one cancer is unlike another - even if it's the same group like breast or colon cancer.

Dr. Cusnir can tell you more about it. I was lucky to attend a lecture he gave at our local community centre in 2018, a few months after I had had my last surgery. I filmed the event and posted it on my website (with his permission of course). Go check it out, it's fascinating.

* * * * *

When my immunotherapy treatment started, I was literally on my last legs, and it felt I was getting worse every day that passed by. One thing that I knew was going to be vital to my survival was to retain a positive attitude. I believed in immunotherapy in principle. It's mechanisms made sense to me.

But mentally, I was ready to throw in the towel. I was very aware of that. My internal fight was to keep my spirits up and hang in there. No matter how much pain I was in. No matter how sleep deprived I was.

I decided not to give up. It was a conscious decision for me. It didn't just happen either; not giving up required a great deal of work. But I knew how to do it, because many years earlier, I had learnt how.

Believe it or not, I learnt how to never give up from playing video games with my wife.

How To Never Give Up

One of the things Julia and I have in common is that we like playing video games on occasion. We're not hardcore gamers or anything, but we appreciate this very interactive form of entertainment.

It seems we always have done: Julia's Dad had a Sinclair ZX Spectrum when she was a kid, and I had the Commodore 64 in the early eighties. When we tell each other stories from the olden days, we keep saying that we would have been the coolest friends, even back then.

When we first got together, Microsoft's original Xbox console (early millennial vintage from 2001) was one of the platforms we played games on. Two games in particular spring to mind: Timesplitters 2 and Project Gotham Racing. Although they are totally different games, they have one thing in common: you can play each level of the game at varying degrees of difficulty, from very easy to pretty much impossible.

Project Gotham is a car racing game. To progress in it and unlock additional tracks around the world and get access to better cars, you have to beat little challenges and tests. For example, drive really fast through a traffic camera after a particularly tricky set of curves. Overtake as many cars in a certain amount of time or drift through a corner for as long as you can.

Passing a challenge will give you one of five shiny medals, all the way from the easiest "steel medal" to the highest achievement: the "platinum medal". The better you do at passing a challenge, the more precious a medal (or metal) you get.

To progress in the game, it's enough to pass the steel medal and move on. Everything else is a bonus and sometimes gives you additional little extras in the game, but they were so unimportant that I can't even remember what they were now. My approach to these challenges was always to simply pass them and move on.

So what I did was to try the next challenge we had to do, maybe two or three times, and when I passed anything higher than the required steel medal, I thought it was time to move on and enjoy whatever this test would unlock.

Julia's approach on the other hand was very different: she didn't rest until she beat that all expensive and unattainable platinum medal. Even when she had already passed challenges, she would come back later and try again and again until she got the highest achievable goal.

She did not give up.

What fascinated me about her approach was her determination to not give up. Julia would never rest until either she or I had achieved platinum status in every challenge the game had to offer.

You see, I believed I didn't have it in me. I was never prepared to go through that amount of pain, confront my anger and frustration and push my abilities to the limits. What was the point? I wanted to enjoy the game, not feel terrible about it. We got the same unlockable reward without investing so much pain and stress. Why go the extra mile and suffer?

I believed that these higher goals were put there by the developers so that either nobody could get them, or that complete über-nerds had a bit of a challenge because they had nothing else to do with their lives than play that game to its limits.

At least Project Gotham was fair enough to players to add these challenges as bonuses, rather than make them mandatory achievements for progressing in the game. In contrast, I vividly recall my first ever racing game experience on the PlayStation 2 a few years earlier, in which it seemed that the license tests in Gran Turismo 3 were made deliberately difficult (at least in the PAL version of the game). Only players with an extremely high level of skill could pass and get the lowest medal. Now THAT made me mad, because I felt that it was unfair to not let lesser skilled users like myself have a good experience with the game and in turn never get to the final stage. That's simply bad game design in my opinion, no matter what Kazunori Yamauchi tells me.

* * * * *

Here's what happened when Julia and I had a gaming session together on Project Gotham: we'd unlock what we could, using my "least amount of effort" approach to get the steel medal. Then we'd play with what we had unlocked, until we hit another barrier that required the next challenge to be done.

Inevitably we would hit a part of the game that was too difficult again. At that point, we would have to make a decision to either do something else, or to go back to one of the earlier challenges we had already passed and give it another try for a higher medal. Most of the time, before turning to other activities, we chose the latter approach.

So Julia would pick a challenge and try the best she could to get a higher medal than the one we had. We took it in turns until one of us lost their patience (usually me), but we kept going further and further.

First there was the bronze medal. This one was almost as easy to get as the steel medal. It only required little time and effort to unlock. The silver medal was next, and it was definitely trickier to achieve, but still very much in the realm of "possible".

Then there was the gold medal. That one was impossible. Couldn't be done. No matter how hard I tried, it was usually too much for me. I believed I was just not skilled enough to make the required moves in the amount of time needed to get to gold. Or in other words: I chose to believe in that reality.

Platinum was even worse! If gold was already impossible, then the top of the range platinum medal was something equally unattainable. It's like infinity: "infinity plus one" is still infinity. It doesn't get anymore infinite than infinity. If gold was already infinitely unattainable, then platinum was basically "infinity times two". Twice as impossible.

Julia's resilience and perseverance however, and ultimately her very different belief in the fact that getting gold (as well as platinum) was a real possibility, proved that it could be done. I would have never tried otherwise, and therefore never found out the truth.

Time after time, I tried to improve, and I lost. And every time I lost, it reinforced what I had declared to be the truth: that getting gold was not possible.

Julia just kept trying, and didn't give up. She believed it was possible, otherwise why would those developers write a challenge like that into the game? And whaddya know, equipped with perseverance and determination, and several (what felt like a hundred) attempts later, she got that gold medal. Again and again, challenge after challenge.

True to Julia's nature, she didn't stop there either. "Well now that we have gold, maybe we'll try platinum next" - and off she went again, to present the gobsmacked audience of one with a repeat performance when - naturally - she got the platinum medal!

* * * * *

Seeing this was almost an exact repeat of the Rubik's Cube epiphany I had. There I was, being shown without a sliver of a doubt that my beliefs were wrong. Again. And that all the time and effort I had spent trying to hold on to those beliefs could have been spent on bigger and better things, rather than fly into a rage or telling myself that I wasn't good enough to win a petty challenge in a video game.

I had a really hard time believing what I saw when Julia kept collecting these unattainable medals, but she encouraged both of us to keep trying and trying, and eventually we won most of these pathetic challenges with the highest scores. We even had a great time doing it!

* * * * *

It took a while for the implications of this discovery to sink in. At first I wasn't convinced at all. "That's a coincidence", I used to say. "It was an accident. A fluke. Can't be sustained. There's always another more difficult, more evil challenge around the corner". Those were my thoughts.

The more I kept trying, the more I started winning better medals myself. I was actually a little better at moving the joystick than Julia was, but what she was lacking in technical ability, she more than made up for with her unbelievable perseverance, her power of not settling for less. She just never gave up. And my (very slight) technical joystick moves meant extremely little due to my attitude of throwing in the towel before the fight had ended.

What a remarkable quality that is, the ability to simply not give up, no matter what messages your brain keeps presenting you with. And like the Rubik's Cube Analogy, my tale about a retro video game from nearly twenty years ago is a mere metaphor about more important things. It tells us how not to give up.

Here's how it works:

You

do not

give up.

No matter what.

It's as easy as that. And while it sounds simple, in reality it obviously isn't. You'll have to confront all kinds of demons that tell you that giving up and packing it in is the only logical solution. Like my inclination of saying, "what's the point in wasting all that time and energy on something that's unattainable?"

Here's the key to success: this message (something along the lines of "give up now") is sponsored, provided by and courtesy of your very own Bullshit Brain. It's not real. It's just another thought, a random belief, and very likely not the truth.

It may even come from a place of consideration for our wellbeing. It may want to protect us from further pain or anger or whatever it is. Such messages may well have good intentions (much like the pavement on the "road to hell").

The brutally honest truth is that The Bullshit Brain keeps you in your place and doesn't get you a platinum medal in Project Gotham. Or in fact let you do anything that pushes the limits of what Jerry Hyde calls "our Sunday Afternoon Existence". You can read more about it in his book, "Play From Your Fucking Heart".

* * * * *

I remember when I recovered from one of the many surgeries I had, one of the exercises I was recommended to do was to get up at least once a day and have a walk around the block. Even though it was the last thing I felt like doing, it is absolutely right what the doctors tell you. Regular exercise will aid a speedy recovery. The more I pushed myself, the quicker I got better.

Although I had an ample supply of a painkiller called Tramadol with me, I refused to take it and instead used Acetaminophen (Paracetamol) to keep the worst of my pain at bay. Tramadol is much stronger, with the ability to almost switch off pain completely, but so are its mind altering side effects, not to mention its addictive properties. It's an opiate, what else do we expect. Potent but dangerous. I settled for a little less side effects, and a little more pain instead.

Inevitably there came the point at which I had the desire to get up from my comfortable and pain suppressing chair in the lounge and get some exercise. Keep in mind that at this point, a trip to the bathroom was a 10 minute affair and required the better part of half an hour as a rest period afterwards.

While I was sitting there, my body clearly calling to give him some exercise, my Bullshit Brain sent me a message on the other line. "Oh, I wouldn't do that if I were you, it's way too early to go walking outside, think of the side effects, the bitter consequences. Think of the pain, oh my God, the excruciating pain! What happens if you need the bathroom while you're outside? You won't be able to get back to your apartment in time, it'll be terrible! Best stay right here where you are."

Those sound like good intentions, do they not? These messages, considering the wording, are trying to prevent me from having a bad experience on a forthcoming walk around the block. Depending on the Bullshit Brain's attitude on any given day, the same message could be broadcast with a very different tone of voice. Something along the lines of "How dare you even entertain the idea of something that might very well kill you? You want to go back to the Emergency Room? You're going to be in so much agony you'll wish you never even had thoughts like this, and it'll be all your fault, you pathetic schmuck!" Or something even more vicious - I trust you get the picture.

I'm bringing this up because it illustrates once again that we have a choice in these matters. We can choose to believe the Bullshit Brain, play it safe and not get up to have that walk. We can choose to ignore the gut feeling, the bodily message and instead trust a thought created by the brain.

Alternatively, we can acknowledge that message for what it is, take it under advisement and see what the body says when we choose to get up and go for that walk anyway.

It's a tough choice, but a choice nonetheless.

I don't mind telling you that I was not always successful ignoring these messages and very often gave in to them, thinking, "you're right, Bullshit Brain, today is not the day for an adventure". And every time I did this, my situation did not change. It didn't get any worse (thank God), but at the same time, it didn't get any better either. Twentyfour hours later I would feel exactly the same as before, without the benefit of improved health.

But - check this - on the occasions when I pushed through and went for a walk anyway, ignoring the Bullshit Brain, I would feel the benefits for the rest of the day, and the day after.

Sure it was exhausting, and those walks were extremely short and slow at first, but the more I did it, the longer and faster they became. I was surprised to find how fit my body already was, and that the picture my Bullshit Brain painted for me as to the dangers of the situation, suggesting pain and agony, was simply not true. Utter BS, hence the appropriate name.

* * * * *

The real trick is to identify the Bullshit Brain for what it is. That is to say, hearing a message and identifying its sender. That's not always easy, because The Bullshit Brain can disguise itself behind so many well-meaning words. I guess that's a good topic for another whole book in itself. "The Bullshit Brain and how to ignore it". Food for thought.

Until such time, think of it this way: say there's a movie you want to see, but all the newspapers and review websites suggest that it's crap. Do you believe them and not go with your instinct that says "let's watch that movie"? Or do you think, "to really make up my own mind, I'll have to go and see that flick myself, no matter what the internet says"?

You know the answer: only your own opinion counts, so only your own experience will be able to tell you if that movie is for you or not. If you really want to know, beyond a sliver of a doubt, you must go see it for yourself.

* * * * *

A good exercise to identify the Bullshit Brain is to play "what if". I remember the Cookie Monster from Sesame Street had such a machine, the "what if" machine. What if we press this button, what if we pull that lever. Every time he did that, a cookie would reveal itself. But the trouble was, that button was too far away from the cookie, and as soon as he took his hand off said button, the cookie would be covered again with a see-through lid. Needless to say, he ended up eating the whole machine (including the cookie).

I digress...

To play "what if" in our context means to imagine yourself in two situations. In one scenario, imagine how it would feel like giving in to the demands of the Bullshit Brain. In my example, imagine you'll stay sitting down in that chair. Spend some time exploring what that would be like, or to say it in Dr. Phil's words, "How's that working for ya?"

Next, imagine what it feels like to go with your gut feeling instead. Again, spend some time thinking what it would be like, paying attention to every small detail. To stay with my example, imagine what that walk outside would feel like.

What do you notice? Put the book down for a moment and follow your thoughts if you like. Close your eyes and watch what happens, then come back and see if we're in sync here.

Welcome back. Let's compare notes:

When I think of staying where I am, in the chair that I've been sitting in for a while, I can't think of much else than the current situation has to offer. It doesn't matter if that's good or bad, comfortable or not. Maybe it's because I've already noticed what there is to see around me. Walls, furniture, TV (switched off), windows with (or without) a view, albeit the same view as an hour ago, a mobile gadget next to me, that sort of thing. I know where I am.

But when I imagine going outside, the ideas just won't stop coming: the smell of fresh air, the wind in the trees, perhaps some traffic in the distance, people on the street, the clothes they wear, some new (and annoying) advertising at the bus stop, a new (and annoying) construction site around the corner, a taxi pulling up outside the Cuban sandwich shop... I could go on and on. You get the picture.

I immediately notice an air of excitement about being outside, and it's this excitement that - at least for me - is a great signpost as to what is a bodily feeling and what is a message from The Bullshit Brain.

There's a lot more stimulation outside than there is inside. Smell in particular is something we only perceive when it changes for the first few moments. The same goes for any change, be that the wind in our face or the rain on our skin. We get used to it rather quickly. It's this change we find stimulating and exciting.

* * * * *

"So how does this relate to the chapter title about not giving up, Jay?" - well let me tell you: by giving in to the false suggestions sent by the brain, we give up. We resign ourselves to the fact that doing nothing and not venturing forth will be the right thing to do. As a result, nothing changes.

Going with our gut instinct instead, using our own excitement as an indicator for the right direction, by challenging our own belief systems and trying something new, we're changing our world. Our reality. We can break boundaries, we can experience new things that seemed impossible before, we can find new truths and solutions to problems we may otherwise have been unable to solve.

To put it into a practical example: if my original tumour was indeed 5 years old by the time it was discovered, a colonoscopy in 2010 might well have prevented the whole shit-storm I found myself in several years later. But my Bullshit Brain thought it was a much better idea to do nothing and give that procedure a miss.

* * * * *

My point is, and this is a difficult thing to swallow, we are responsible for what we experience. Perhaps not for everything, maybe not for every single detail, but certainly for a great deal of what's seemingly happening to us. Just be aware that we have a choice, and that there is more to uncontrollable situations than meets the eye.

Being aware that we have a choice is not only very liberating, it also puts us back in charge. Harnessing the power of this notion gives us - among many other insights - the power to not give up.

* * * * *

So remember the key things to success: identify messages from The Bullshit Brain and separate them from the Gut Feelings you have. They are different. With practice you'll be able to tell which one is which. You can then decide which of the two you'd like to follow, putting you and no-one else in charge.

Don't Give Up.

It'll feel extremely refreshing every time you do it!

ACT 3

Getting Better

There's been a ton of hardship and agony in this story. I'm quite surprised you're still reading it actually. Well done for hanging in there! I'm glad you're here, because we're finally coming to the part of the book in which things are turning around, in the devastating conclusion of this epic tale.

It's what screenwriters often call The Third Act, although the structure doesn't hold up exactly as the late Syd Field would have defined it. In my case it is indeed the resolution of the heroic story, in which health and wellbeing are finally coming back into my life. But because so many things are happening on so many levels, it'll take up a little bit more time and space than the 15% Syd would have recommended.

So let's recap the state of events quickly: I've been discharged from the hospital, I'm living with my artificial liquid nutrition every day, and I can barely move around without the help of my trusty Marty Crane cane. I still had my colostomy and a huge bulge from a peristomal hernia on the left side of my tummy, but because I'm not using my GI tract, this thing acts more like an ileostomy (we'll cover the gory details about that later in this act).

I've just managed to drag myself into the hospital to get my first infusion of immunotherapy, Dr. Cusnir's secret weapon and backup plan known as Keytruda.

* * * * *

I remember the day when Julia and I walked into the treatment room or rather Julia walked, while she pushed me in a wheelchair. I could barely set one foot in front of the other.

"What happened to you?" Karen asked, with a slightly concerned look on her face. We explained the situation and how we survived the recent hospital vacation. We had already discussed the details via email, and I was so glad that we would continue my treatment on this day. It was obvious that we had no time to lose to stop this disease from pulling the plug on me.

Thankfully our insurance had already agreed to the treatment, and as complicated as they can be sometimes, I couldn't be more grateful for how cooperative they were throughout this whole ordeal. I still have no idea how Dr. Cusnir made it happen, if he had to bribe someone, call in a favour or fudge some scary paperwork. I'm sure it was all legal and above board, but it's probably best if I never find out the details (in the interest of plausible deniability, you understand). All that counts is that I received the first treatment of Keytruda exactly when I needed it, several months before its official FDA approval.

How exactly the cogs that turn The Universe have clicked into their right positions might forever remain a mystery. I'm fine with that. At the end of the day, the "how" and "why" don't really matter. What counts the the journey, and the outcome.

* * * * *

Dr. Cusnir was happy with my blood work, which meant that we could finally try what this immunotherapy thing was all about.

I could no longer walk into the infusion suite like on so many previous occasions. I could barely acknowledge anyone and I could see they were all shocked by my appearance and sudden deterioration. I was physically and mentally exhausted. I could not sit in a treatment pod but instead had one of the private rooms with a bed.

Carole was one of the many lovely nurses in the suite. She helped me get into the bed. She was always supportive, happy and gave us many encouraging words of hope. Today, she could see I needed that even more than before.

She told me a remarkable story about an extremely sick patient, just like me. That patient had to be wheeled into the treatment room from their hospital bed as they could no longer walk, but after they had received Keytruda, they made a miraculous recovery.

She promised it would be the same for me, she sounded absolutely positive of that. She had seen what this stuff could do, she had seen the transformations it could bring. All I had to do was trust her and believe that this new treatment would help me get better.

Carole was very convincing. This was not a random story she made up just to make me feel better. She had administered Keytruda as part of medical trials for the last two years, and she had seen, like many of her colleagues, how patients had rather casually recovered, as if beating cancer wasn’t even a big deal. Like an Aspirin can get rid of a headache.

It only took half an hour in the regular Mount Sinai infusion suite to administer this first dose, intravenously and through my port. It was a small bag of clear liquid, probably a powder dissolved in normal 0.9% saline solution, not more than 250ml. That's just a guess though.

As with every other cancer infusion I ever got, I felt no immediate side effects. I mentally prepared myself for the fact that something untoward might be happening over the next few days though.

I instantly liked the short duration of the infusion. That in itself was good news already, because I couldn't sit still for longer than half an hour anymore by now. What was even more amazing was that I no longer had to drag a pump around with me for the next two days, and also didn't have to come back to the hospital for it to be disconnected either. That was just not necessary with Keytruda.

We left the hospital, thanks to one of our friendly drivers from ZUNI transportation. We had to be back for another routine blood test and port flush the following week, but we wouldn't see Dr. Cusnir again until the next infusion was due, which was three weeks later. Even that was good news: Keytruda infusions were given to me every three weeks rather than every two weeks. What's not to like?

* * * * *

As with every drug you take, you have to give it some time and wait for it to kick in. So I waited patiently, hoping Keytruda would be the one to turn my life around. The one to make me feel better, and to heal me going forward.

I had my doubts of course. We had false alarms before, when both the chemo and the radiation had seemingly done good things, but there was usually a price to pay that I hadn't anticipated.

Time passed.

One week. Two weeks. The third week.

Nothing seemed to happen.

Was this stuff actually doing anything? For $10,000 per infusion, you'd bloody hope so. But would it really work in my rather complicated case? Although colorectal cancer is no longer the terminal illness it once had been, close to a million people in the so called "developed world" are still dying from it every year. Considering how I felt, it wouldn't have surprised me if I'd be joining them very soon.

After three weeks, Keytruda didn't seem to have an effect. On the contrary: as the days went by, I felt worse for wear. Had they been mixing the right ingredients in the pharmacy that was attached to the infusion suite? Had I accidentally been given saline solution instead of the good stuff?

We went back to the hospital for our second treatment, and I mentioned the non-effects to Karen and Dr. Cusnir. They both agreed that I was probably feeling the way I did because the cancer was still doing its thing, but to be patient and give Keytruda a chance. After all, it wasn't like an Aspirin that usually kicks in within half an hour.

They explained that even if the treatment was working perfectly, my immune system still had a lot of work to do. My cancer was so far advanced that it needed to be stopped from growing, and then, little by little, its ill effects would have to be repaired.

Julie agreed that a lot of protein was needed to support my body on this critical mission, so I made sure that I began every day with some form of protein shake in the morning. It added an extra 20 grams to my diet in addition to what the TPN was providing. Armando was briefed about my additional protein intake, just in case my blood work would reflect any unexplained changes.

* * * * *

The waiting game continued.

Both February and March passed us by.

I sorely missed exercise. Not that I've been a sports nut at any point in my life, quite the opposite. If you'd asked me how I would describe myself, the expression "couch potato" springs to mind. Although surprisingly, depending on who you ask, I seem to do a lot more casual exercise than the average human on earth. But I've never been a "small boys in the park" kind of guy (that's a football... sorry, a soccer reference by the way).

We don't have a car, so I'm no stranger to walking a good few miles. I also like swimming, and one of my favourite pastimes before this whole cancer episode started was to go swimming several times a week. We live only two blocks away from the beach, so the Atlantic ocean and its inhabitants are practically our neighbours.

Since I started having infections, I reacted very dramatically to slightly cooler temperatures. Besides, since I had my colostomy and catheter, I didn't think it was a good idea to subject them to sandy salt water. So I'd stopped swimming for the time being.

My absolute favourite is cycling though. Ever since I was little and my parents got me this used 24" bike and gave it a dark yellow spray paint treatment, courtesy of some leftover BMW car paint. I cycled everywhere with my parents, until my bike finally gave in and broke (I don't recall the details of that incident though).

As I got older, in the early eighties, my parents gave me a Kalkhoff racing bike. It had a whopping ten gears, ergo-dynamic handle bars with gear switches mounted to the bottom part of the frame, the style you wouldn't be able to sell anymore these days. I frequently ripped out the hairs on my legs courtesy of those cables.

I loved that bike though, and living in the middle of nowhere, in a relatively flat part of the country, I used to start cycling longer distances. My friends and I even cycled to school regularly if the weather would allow it, in excess of 10 miles (16km) each way. That early training explains my rather pronounced leg muscles.

When I lived in London, I used to cycle to work regularly from our home in Haringey, all the way to either Camden Town or Chiswick. The latter is about 18 miles one way, or a 36 mile round trip (that's nearly 60km).

I remember cycling home one night after a long hard day at work at IMG. It was way past midnight sometime during a late summer, and like I always did, I took a shortcut through Hyde Park, at the Albert Hall entrance. I knew they usually closed the park overnight, but to my surprise it was still open, so I snuck in.

When I reached the other end, I noticed that a guard was driving from entrance to entrance, locking each and every one of them shut until the next morning. I was seemingly trapped in Hyde Park at night!

By the time I got back to the entrance at Albert Hall, even that gate was locked. I never saw the guard who did it, so I couldn't even have a serious chat with him to play the "stupid foreigner" act. I searched for hours, I cycled from entrance to entrance, but there was no escaping. All gates had been locked.

In the end I had to lift my bike over a low fence, jump over and beat a hasty retreat. Those were the days!

* * * * *

When we first moved to Miami Beach, we were using those bike vending machines we have here on every street corner. They've started springing up in many cities around the world since 2010. Sadly the system sucked so much that we had to abandon it and bought our own bikes in 2013, a decision we have never regretted. Miami is such a flat area, if it wasn't for the weather and the lack of windmills, you'd think it's The Netherlands.

But since I had that catheter and a leg bag, I stayed away from cycling as well. I had horror visions of falling from my bike, while my catheter would get stuck behind some lever or cog, ripping the whole thing inclusive of the inflatable balloon out of my bladder. There was also the anatomical issue with the saddle: we men are basically sitting on our urethra, and if that's already occupied by something resembling a garden hose, it's just a lot less fun to experience than it might sound.

For a while I thought of getting a different saddle, one that splits at the front so it would exert less pressure on that sensitive and newly occupied part of my anatomy, but in the end I thought it much safer to stop cycling for a while.

And once my catheter was removed, my abdomen was in such bad shape that cycling wasn't an option anymore either. I did try it out once, but it wasn't anything I could comfortably do.

* * * * *

Nevertheless I was missing it. A lot. The only exercise I was used to by now was a small walk around the block, veeeeery slooooowly, if I could manage a whole block. It was painful and inconvenient, but I pushed through it because I really didn't have anything else that would move my weary body around.

Julia was with me every step of the way, as she had been throughout this journey. It was so important that I didn't have to do all this on my own - I'm not sure if I would have been able to do that.

On these slow small walks, I remember telling her that although it was very uncomfortable for me to move, I decided that I wanted to be in charge, and not let the cancer or the pain take over. I acknowledged them both, but neither of these forces was going to dictate my life. I would rather get wrinkles from a pain-warped face and be the boss than let the disease win.

* * * * *

Until one day, sometime in March 2017, only one month after I had begun the Keytruda treatment, I've started noticing that I could walk a little further all of a sudden. I could walk a bit longer than just a single block around the house. I also noticed that it was less painful than it had been before.

Of course I didn't trust this feeling, thinking of it as a one-off, one that would be surpassed by great agony the following day. I knew the pattern by now. It's like Jerry Hardin's character (Deep Throat) says in The X-Files: "Trust no-one, Mr. Mulder!"

To my amazement, the ever so slightly improved feeling of wellbeing did not change. The next day I felt just as good, and I could walk the same distance as before, a block and a half. And then the day after, I could walk two blocks. The pain was getting less and less, and my walking speed was increasing too. I was even adventurous enough to leave that walking stick at home one day, and to my utter astonishment, I felt fine afterwards. I no longer needed it.

By now, roughly two months had elapsed since starting the Keytruda treatment. By the third infusion, I no longer needed a wheelchair to get around the hospital. Nor did I need a cane to help me walk. My bent-over "old-person walk" had straightened itself up, and I started feeling... dare I say it... like my old self again.

Because both Julia and I were such regular visitors in the hospital, all personnel started commenting on how well I started to look. I was still a bit underweight, and looking at myself in the mirror I didn't think I was a pretty sight, but I felt a great deal better than I had done not too long ago.

I started sleeping again for longer than an hour. The pain during urination had started to fade away a little, and by now I was so used to the TPN that I no longer had the feeling it was getting in the way of my life.

* * * * *

Things were looking up, and there was seemingly no end to the bodily improvements. At first I thought I was making it up. Perhaps I was thinking myself healthier than I actually was, and this whole notion of improved wellbeing was just a side effect of the drug.

That was not the case. The improvements continued, almost at an exponential rate, and I could feel that every single day I felt my once ample energy gradually returning into my life.

I wanted to help my body as much as I could. Regular exercise, as they told me in hospital after surgery, was the key to making a full recovery quickly. I felt that this situation was no different. It felt to me as if my body was trying to recover from a major mishap, but in doing so it needed all the help he could get.

So I made sure I kept up the high protein diet, supplying excessive building blocks for repair and maintenance, and I drank at least 100 oz of water every day (that's about 3 litres). I had to make a conscious effort to do this, but driven by the desire to put all this behind me, it wasn't difficult. Sometimes, all you need is the right motivation.

As Dr. Martinez said to me when I had my horrific blood clot experience, "Drink until you drown my friend... drink until you drown!"

Exercise was the next item on my agenda. Walking was good, and our strolls were beginning to become more frequent, as well as longer and faster but I felt that it wasn't enough. I wanted to get back on my bike and see what that felt like.

This was where my Bullshit Brain kept interfering. I thought that the only way to figure out if I was fit enough to go cycling again was to try it out. Like many things in life: thinking about it doesn't really give you the experience. There comes the point where you have to try out what it's like to bungee jump, and if you like it, well do it again. If you hate it, well avoid it in the future.

When I considered cycling again, my Bullshit Brain kept saying, "don't do it, you're too weak, there will be consequences, and the pain will come back". And for a while there, I agreed. I thought it best to stay sitting in my chair, not rock the boat and be happy that I could at least walk up to three times a day by now.

There came the point where I thought, "Screw this! I trust my body, and if he feels that cycling isn't something he wants to do, I'm sure there'll be some kind of message he'll send me - no matter what my Bullshit Brain has to say about it".

It made sense for me to think that way. After all, my body was seemingly recovering faster than my thinking could catch up; and the only way to get an accurate reading as to how fit I was, was to swing myself on the bike and experience what would happen.

A few years ago I bought a device with which I can use my bike like a stationary exercise bike. It lifts up the rear wheel and applies some resistance, which can be controlled with a shift lever. This thing would allow me to try out what it was like to sit on the bike a tread the pedals in the comfort and safety of my own home.

It worked fine. I wasn't fit of course, far from it, but in regards to wellbeing or pain messages from my body, everything felt good.

Inspired by the successful early test, I carefully pushed my bike downstairs, navigating the elevator, went out into the back alley and climbed on my bike. Would I still be able to keep my balance? Would I be able to make it past 1st Street? Would I maybe reach the tip of South Beach?

There was only one way to find out.

* * * * *

As I was turning right, into 2nd Street, making sure I wouldn't run over any pedestrians or get run over myself by the odd car, it was like I had never been away from the saddle. In fact, cycling worked much better for me than walking did.

Ignoring all the familiar messages that my Bullshit Brain was firing at me, along the lines of how dangerous this whole endeavour was going to be, all I felt was the beautiful warm wind in my face and a very strong bodily message that said "Yeah Dude! THAT'S what I've been missing. THAT'S what I've been waiting for. Keep it up!"

My body had spoken. That message was so strong I couldn't ignore it. This was going to be my new exercise regimen. This was going to make me better. I loved it.

When I got back home after a speedy trip through the neighbourhood, I felt like I had reached a major milestone. This was a huge accomplishment. Over the next few days I took slightly longer trips, making sure I didn't overdo it, and to gradually let my muscles get back into shape.

* * * * *

Both Julia and I were over the moon about this exciting turn of events. We starting doing little trips to our favourite coffee shops a few blocks away, taking it one step at a time, gradually increasing the distance. When we made it as far as Maurice Gibb Memorial Park, at the northwestern end of Miami Beach, perhaps two miles from our home, I told Julia that I wanted to try going all the way to Mount Sinai for the next blood test. It was just under five miles from our home, I felt fit enough to try it, and even if my energy wasn't going to be enough for the trip back, we could always catch the bus.

Julia is a lot more cautious than I am, and although she was happy to give it a go, she was a little ambivalent about this trip. I promised we'd take it nice and slow, with ample time in case I wasn't going to make it. I trusted my body enough by now that if there had been a problem, he would have let me know.

* * * * *

She wasn't just concerned about my being fit enough to make the trip though; there was also the issue of doing the trip with my attached TPN, which would only finish either at the hospital or shortly after. How would my body react to a sudden spike in energy usage? Moreover, what would happen if I'd fall off the bike? The line that was connecting the TPN with my infusion port might be ripped out, leaving me with a rather hefty flesh wound.

Julia had a very good point, which I hadn't thought about. It reminded me of my thoughts about cycling with an indwelling catheter in place and how hairy the outcome of an accident could have been.

Accidents aside, I thought the only way for us both to see how this was going to play out was to try it, much like cycling in the first place. Julia agreed, on the condition that we'd both be extra careful.

* * * * *

Sometime in April, that particular Wednesday morning came, and excitedly we climbed onto our bikes and started our journey to Mount Sinai. It went swimmingly - there were no hitches, there was no need to stop, and although I was exhausted by the time we got to the hospital, I survived and I felt fantastic. It had been another marvellous achievement. A milestone on the road to recovery.

Both Karen and Dr. Cusnir were extremely impressed. Not only was I feeling "a little better". I felt fit enough to ride a bike again, and a rather long distance too. I couldn't believe it myself. No-one could believe it!

Remember that by this time, it had only been two months since I started the treatment. Only three infusions made the world of a difference and turned my life around.

In such a short amount of time, my body was obviously able to stop the cancer from growing, and more importantly, he started to reverse and repair some of the damage the disease had done.

This was an indication that our treatment was working, and working well. I had hoped so much that it would. It was exceeding our expectations, just like Dr. Kuritzky had predicted it could, at our very first meeting back in the summer of 2016.

Dr. Cusnir was ecstatic. He was a happy man even if he had a bad day, but it was obvious that a great weight had been lifted off his heart. "I don't care what the scans or the blood work shows. If I can see changes like this in a patient, then I know we're on the right track", he said.

We all agreed with his statement. I felt better than I had in years. I even felt fit enough to grab a drink at Starbuck's on 41st Street and cycle back home.

* * * * *

This was only the beginning. What else was Keytruda going to do? What else was my body going to repair over the next couple of months?

It was a serious miracle!

Side Effects

Every drug we take can develop side effects. Some are more severe than others, and some drugs may not have any side effects at all. We are all individuals, and as such, every drug has a very different effect on each one of us.

Chemotherapy as well as immunotherapy is no exception. Both have very different side effects. I've already told you about the bodily issues chemotherapy can bring, but I haven't yet spoken about some of the mental peculiarities I've experienced.

I'll do that in this chapter, along with the side effects my immunotherapy treatment brought with it. I'm also going to go into detail of what helped me overcome these situations.

Before I forget to mention this, I strongly recommend getting a hobby for the duration of the treatment. Something that that you can really sink your teeth in, something that will take forever to complete.

Going through any kind of scary poisonous treatment is like doing time. Eventually it will be over, but until that day, you'll have to stay sane and survive mentally. You need a mission that allows you to do that. Pick something that you're passionate about, something that you've been putting off because it would just take too long to do.

It depends on what you're into. If you're passionate about reading, start indulging in Danielle Steele novels for example or those by James Patterson. Start knitting hats and jumpers for the whole family, your whole street or for those fellow patients in the chemo suite. Pick up that open ended video game that takes in excess of five years to complete. Now's the time to begin such ventures.

My personal passion is software, and I'll talk more about that in a moment. A hobby of this caliber is important for your sanity because you need a constant in your life that is not affected by what's happening when potential side effects kick in. With cancer treatment, everything around you appears to change at a moments notice. This hobby of yours will not. Pick one early on while you can still think clearly enough to remember this to be important.

* * * * *

Immunotherapy side effects are nothing compared to those of chemo treatment, in fact they're like a walk in the park by comparison, depending on how well you tolerate it. Let's just say they come with a different kind of price tag, if they happen at all.

When I was on immunotherapy, I didn't notice any side effects for the first six months. Nothing. I felt better than I had felt in years. When minor side effects occurred, they appeared to be so unrelated to Keytruda that I didn't make the connection at first.

* * * * *

After I had started cycling again in April, my body had a lot of work to do while it was un-growing the damage that had been caused by cancer. By God it was a lot of work, but he did an excellent job at fixing things. For a while there I thought he might even automagically reverse my colostomy, but sadly that didn't happen. Maybe one day we'll have such a solution.

There was a scene in one of the original Star Trek movies, in which Dr. McCoy gives a women on Earth in the eighties a pill that regrew a kidney inside her. Crazy and impossible, laughable even. But, like so many miracles, it all starts with a dream - that's all I'm saying.

During May and June, my abdominal issues nearly disappeared. I was used to the TPN by now and my new liquid diet, never had any nutritional issues from what I could gather, and my mind was beginning to get sharper again.

Until such time, I had real trouble focusing on things. Anything was a real struggle, no matter how simple or how complex. I've always been into relatively difficult software, things like image manipulation, video editing, 3D animation, the stuff that's designed for "professionals" rather than those apps for casual users.

3D software in particular can screw with your head on a good day. Any 3D software does that. It's a complex subject matter by definition, and I guess there's just no simple way to make 3D software that's easy to understand.

During my treatment and to pass the time, I played with apps like Blender and DAZ Studio. There were several other packages too, and I remember using them as a hobbyist before my treatment started. 3D has always fascinated me, ever since I'd started playing the first video game that featured a 3D engine, but I was never mad enough to consider it to be a career choice.

Now, with my chemo brain condition, opening any of those programmes was like looking at the characters of a language I didn't speak. I recognised the interface, but I kept thinking "how do you do... anything?"

Nothing made sense to me, and only under extreme concentration I was able to do the most basic tasks - if I could work anything out at all. The crazy thing was that during my non-treatment days, I knew how to do rather a lot in these applications. I wouldn't call myself a whizz-kid or expert, but I certainly knew my way around.

Now, several months into and even after my chemotherapy treatment, I had no idea what any of those weird looking icons were trying to tell me. I felt as if my brain had been replaced with that of a stupider person.

Sometimes I felt really sad about this, and I kept thinking that this mental state of severely reduced sharpness was going to last forever. No matter how hard I tried to concentrate, those neurons were no longer firing like they had done before.

At other times, the same mental state made me laugh, because I remember that whoever was operating the computer currently was not the guy I used to be. I had clear memories of being able to accomplish things on this very hardware, but now I felt exactly like Homer Simpson encountering a computer for the first time.

Turns out this is a condition called "Post-Chemotherapy Cognitive Impairment", or PCCI for short. It's also known by it's more memorable and casual term "chemo brain". Many cancer patients who received chemotherapy drugs know this phenomenon well.

Chemo brain can affect different people to different degrees. Scientists aren't even sure how it happens. It certainly has to do with the aggressive nature of the drugs itself, but there are also the interesting effects this condition has on how patients react to having it in the first place.

To me it felt like my brain was only capable of thinking at 30% capacity. I'd regularly lose focus, didn't quite comprehend what I was reading or watching, and I found it hard to multitask. Even something as little as having more than one item on my daily agenda, to be done in my own time, was tough for me to master. And usually I'm such a bright lad!

I had to make sure to write things down I didn't want to forget, much more than usual. I made use of reminders and lists on my mobile phone, only to forget that I had already written several things down in other lists. Most of the 3D articles I'd written and published during that time were a result of a tough struggle to make sure I'd remember what I had just found out. Feel free to check them out on versluis.com.

Writing things down was a great coping mechanism for me. I find my websites in particular a great help for that, because it allows me to use any internet capable device to store or retrieve my own information. I have several sites, each of which is about a different subject. That way it's easy for me to go directly to a focused type of notebook, much like having several ring binders. In addition, websites can help others in a similar situation to find a solution to the same puzzle I've just found the answer to.

I've been using websites in this way for many years, long before my cancer treatment started. But particularly during this difficult time with PCCI, taking notes was a vital memory aid for me. It's like the walking stick I had for mobility. My websites were becoming a "brain cane" if you will.

I used WordPress to help me through this. It's a popular open-source content management system that runs on a LAMP Stack, either on the internet or in the privacy of your own home. It sounds a lot more technical than it really is. I've written a book about what a LAMP Stack is, it's called "LAMP Stack for Humans", go check it out if you want to find out more.

I admit that a simple notepad and ballpoint pen would do the trick just as well though. Many people use a hand-written journal for the same purpose, but being a techie at heart, and someone who can barely decipher his own handwriting even if he tries very very hard, typing is a much more efficient (and legible) way for me to put thoughts on paper.

* * * * *

The reason why I took meticulous notes was that I didn't know if or when this condition would go away again. My fear was that chemo brain might be my "new normal". That I'd never be able to focus again. How was that going to affect my life?

If I had no idea how to use the intricate basics of 3D software, where would this condition end? Would there be a point at which I was no longer able to use a computer at all, simply because I had no idea what all the buttons would do? That would have been a severe death blow to any type of career I was going to have in the future. What a frightening thought this was indeed.

Written notes were not the only record I kept of things I didn't want to forget. I also had a video diary. This was also something I had started long before my cancer treatment. I wanted a short record of things that were happening in my life, and both Julia and I used to have great fun watching what was going on in our lives a few months or even years later.

When this cancer journey started, the video diary was gradually becoming a quick way to take notes on what was happening and when. Picking up my mobile phone and quickly making a video allowed me to record what the various doctors had just told me. I knew that without such a system, I was undoubtedly going to forget important facts they'd mentioned to us.

The same principle also allowed me to keep a record of what was happening to me medically. The video diary allowed me to record my condition at any moment, when I noticed changes about my body, be that as a result of the cancer or as a result of the drugs I had been given. Should something out of the ordinary happen, I had a time and date stamp to tell my doctors when exactly I'd noticed something.

* * * * *

Mobile phone storage is limited, no matter how much money you spend on the latest iGadget, so I used to edit my clips together and upload them to Vimeo, a popular video storage and streaming provider based in New York. They use Amazon AWS infrastructure, so I knew my data was going to be in good hands. Vimeo works similar to YouTube, but has many added benefits, such as the ability to download and replace videos, something that YouTube did not allow at the time I started.

Most of the entries I've made were never intended for public consumption, and mostly consist of me speaking into the camera. Audio notes would often have sufficed, but with the addition of video, a whole host of other things could be captured, many of which I was not aware. My emotional state for example, or the pitch of my voice, or any of the other non-verbal ways we humans inevitably communicate with.

* * * * *

Much like with my written notes, the video diary was a way for me keep notes of things I didn't want to forget. Writing this book, you'd think those notes would have come in handy as a great writing aid. How else would I be able to remember all the things that had happened?

Turns out I never looked at a single entry since I started writing. I tried it once, but the memories those videos brought back were so painful that I haven't managed to view more than a single entry. This whole text is based on memory, can you believe it?

The good thing is that all those videos are there, and maybe one day I'll be strong enough to watch them. I might even share some of them with you when the time comes (although I can't make any promises).

My point in sharing all this with you is to let you know how I coped during the chemo brain or PCCI phase. I wrote things down, made videos, meticulously took notes about anything and everything that was happening. Always bearing in mind that next week, I might have forgotten who I was or what I was doing.

The audience I had in mind for any of my recordings, written or otherwise, was always a "future me". And it worked.

Most times, and to my own astonishment, going through the mental effort to record something already manifested itself in my brain. It allowed my mind to "work things over" with a different energy and a different premise. It was like going through it with someone else.

From what I understand, creatives use this technique all the time, because you can never tell when the inspiring muse may come to visit. It looks like we don't have to wait for a near-death experience to start using this type of behaviour and live a better life. We can use this technique even in times of complete happiness.

Try it out, I highly recommend it as a way to channel those many thoughts of yours. Even and especially if you think you have nothing to say. There's always something to say. Trust me on this.

* * * * *

Thankfully my chemo brain didn't last forever, but it did take several months to go away completely. Much like its arrival, the gradual disappearance of chemo brain wasn't an overnight affair. I guess this is due to a combination of lingering chemicals in our bodies. All that poison stays in our systems for many months after the last treatment has been administered, combined with the amount of time it takes for repairing any damage that has been caused. As they say, plenty of liquid intake and time will heal all those wounds.

Here's a tip: If you've been affected by chemo brain, acknowledge that it's happening to you. It's a recognised condition, it's a real side effect. You're not making it up.

Don't give yourself a hard time for being stupid. Just know that you're currently not capable of doing as much as you once could. And know that no matter how bad things look at this moment, your condition will improve. They won't give you chemotherapy forever. This treatment will stop, and a few months later, the chemo brain will fade away again.

Knowing that it's temporary will make the world of a difference.

* * * * *

Let's talk about the side effects of immunotherapy next. While I was on the road to recovery, with my body getting better and better, the effects of my chemo brain phase gradually faded away. I was so impressed with what my body and Keytruda were doing, one day at a time.

For a while there I thought my body was building something like a "super human" when the work was done. Who knows, maybe that was the original plan. They say that we're capable of so much more than most of us are currently utilising. Perhaps with an augmented or more responsive immune system, some of that extra processing power was being accessed inside me and made available.

* * * * *

I kept cycling longer distances as time went by. My regular trip was a quick journey from South Pointe up to 18th Street and across the Venetian Causeway, a quiet road that connects Miami Beach with the mainland of Miami. It's a beautiful ride across many of the small islands on Biscayne Bay, connected by low bridges across plenty of water. The route is ideal for cycling.

Our local newspaper, The Miami Herald, used to have a large building by the bay, just next to the Venetian Causeway. It contained both the newspaper offices as well as a printing press. But since the value of the location had soared over the years, combined with the effects the new millennium had on printed newspapers, they sold the land in 2011 and moved the whole operation to Doral, some fifteen miles west of Miami. The building was demolished in 2014.

It took many years to clear up the site, and I remember that during my rides, I saw how the remains of the building were gradually taken away until there was nothing left of it. It reminded me what Keytruda did to my cancer bit by bit, until one day there would be nothing left of it. Just like there's nothing left of the original Miami Herald building today.

I gradually expanded the distance of my rides, eventually making it as far as Bill Bagg's Cape Florida State Park on the southern tip of Key Biscayne. From our home, that's a journey of twenty miles one way. Considering that I was still on TPN at the time, and on immunotherapy, I was very impressed about being able to cover that distance.

* * * * *

By July 2017, about six months after starting my immunotherapy treatment, I'd noticed a slight pain in my left hand. It felt like a muscle sprain at first, and only certain movements brought it on. I could still grab things tightly, like squeezing soda cans, as long as I left my hand straight and in line with my arm.

As soon as I twisted it slightly left or right, the pain was excruciatingly sharp. It often came out of nowhere and didn't make sense to me. What could this be? Had I been using the brakes on my bike too much? Had I perhaps overdone the cycling altogether?

The more this went on, the more I got the feeling it had to do with my colostomy bag. To empty it, I'd have to bend and twist my left hand, which often brought on the pain.

Remembering Gail's words about telling your doctor everything that's happening in your life, I brought this to Dr. Cusnir's attention on my next appointment. Karen's first guess was just like mine: perhaps it was the cycling. But Dr. Cusnir thought otherwise and said, "It's probably a touch of arthritis".

Arthritis? Me? In these warm climes? I thought that's what old people get. I was barely 45 at the time.

There are over 100 types of what's known as arthritis. The one we commonly refer to is rheumatoid arthritis, an autoimmune disease, in which our own immune system starts attacking the joints in our bodies. This can result in a thickening of the joint capsule, sometimes affecting the underlying bones and cartilage, resulting in pain.

Dr. Cusnir was right: arthritis can develop as a side effect of Keytruda. It made sense too, since we had just switched my immune system into overdrive, it was obviously thinking that my joints are "the bad guys" and started to attack them. Poor joints!

Fun Fact: Rheumatoid arthritis is based on the Greek expression for "watery and inflamed joints".

My arthritic episode wasn't anything serious, but it was bad enough for me to have impaired use of my left hand, and I really needed that for my colostomy bag. There is no real treatment for arthritis, apart from perhaps moving to a warmer area of the planet.

I was already living in South Florida, and it didn't get any warmer than that. Which makes me think that this particular side effect may have been worse had I still been in Northern Europe during my treatment (if Keytruda would have actually been available either on the NHS or any of the German health insurances is questionable, not to mention the huge waiting list there might have been).

What I ended up doing was to buy a brace at my local drug store. It was a black lycra sleeve made by the 3M group, with some internal padding and a metal splint, fastened by a velcro strap. Exactly like the ones you get to treat carpel tunnel syndrome. I think it was called Futuro. Wearing it made me feel like The Future Dude.

This brace was supporting my hand and kept it in a very still position. It insured that I couldn't accidentally twist my hand, avoiding these sudden onsets of dreadful pain when I least expected it.

After wearing it regularly for over a month, the pain started to disappear. I made sure that from then on I only used my left hand very carefully, especially around any movements that involved twisting it.

From what I understand, there's no real treatment against arthritis. Some anti-inflammatory medication can be used successfully, but I've never tried drugs against this short lived side effect. The brace was all that was needed, and a careful adjustment of how I used the affected part of my body did the trick.

We continued my treatment for several more months, but since that episode in my left hand, I had no further issues with arthritis as a side effect.

* * * * *

Around the same time, in June 2017, I noticed one rather significant change in how I was feeling: my body weight started to increase. I had been around 176 lb for a while (80 kg), a nice and welcome increase from the previous months in which I was over ten pounds lighter. With a little extra padding, at least I could sit again without suffering from butt pain. Losing weight is a serious side effect of chemotherapy, so putting pounds back on is usually a good sign that you're back on the road to recovery and well-being.

I kept my weekly blood tests up, so I had access to an accurate medical scale at the hospital. To my surprise, I had suddenly gained ten pounds since I last weighed myself. Although this was nothing to be concerned about, I wasn't sure what caused the sudden weight gain.

Keep in mind that I was on a very controlled diet courtesy of the TPN, so increased calorie intake was probably not the cause (unless I had seriously overdone it on gummy bears and Frappuccinos).

I discussed this with Julie as soon as I noticed it. She explained that to gain an additional ten pounds of body weight in fat, I would have had to ingest an additional 35,000 calories. That's 5,000 extra calories per day. As screwed up as my relationship with food is, I'm pretty sure I would have remembered a binge like that.

Hence it was unlikely to be fat that caused my weight gain. The other more probable alternative was water retention. This could be caused by several factors, one of which is kidney trouble. We knew my kidney values were more elevated than they should have been, so it was something to watch out for.

Other than the number on the scale, there were no visible effects on my body to suggest water retention. It was good to make a mental and medical note of this phenomenon at the time though, because over the next four weeks, my weight kept going up.

By mid July I was 197 lb, and by the end of August I was as high as 212 lb (96 kg). I quickly calculated that if this weight gain would continue at a rate of one pound per day, I'd be well over 300 lb by the end of the year.

I decided that wasn't going to happen.

To make matters worse, I was now beginning to show significant signs of water retention: my face was swollen, my legs and particularly my ankles looked puffed up, and I could feel the effects of added water pretty much everywhere in my system. I couldn't make fists anymore. As soon as I brought my fingers close to my palm, I could feel internal pressure in both muscles and joints building up. This made it very difficult to hold my toothbrush.

The weirdest thing I'd noticed was that I could no longer whip eggs. I make good omelettes, and in preparation I like scrambling a couple of eggs with a dash of half and half in a bowl. I use a simple fork for that rather than a dedicated whisk, but not matter how hard I tried, whisking was no longer possible for me. It was as if my arm no longer followed the instructions it had been given by my brain.

The oddest part of my anatomy that was showing signs of water retention though was my penis: it looked like it had a huge bulge on the shaft. It would even shift positions from day to day. I used to call it FPS (or fat penis syndrome).

I thought at first it might have been the condom catheters I was using (or rather the effect of them having to be peeled off after use, something that's not kind to sensitive skin). I did some research and found an article in which a guy was talking about the excessive use of a sex toy, which had caused this effect on him. Upon reading that, I decided my condition was probably unrelated to whatever he was going through.

Since the TPN was my only source of calories, I had a chat with Armando about what might be going on. He told me that due to an imbalance in my blood work, he would start tweaking my electrolyte levels, essentially adding a bit of sodium. He had also suggested a month earlier that I should increase my liquid intake due to my still elevated BUN and creatinine values, indicating potential kidney trouble.

None of it reduced my weight or slowed down my weight gain though.

Still puzzled, I mentioned this to Dr. Cusnir, who was much less concerned than I was. "So you're trying to compete with me", he joked, poking fun at his own weight. C'mon, I thought - the man isn't as thin as a rake, but he's far from overweight, at least from what I can tell.

But I took his point: we were fighting a deadly disease, having to think outside the box, and a worry as petty as whatever category BMI I was currently in really didn't matter. Nevertheless I was concerned as to why this was happening, and why it didn't want to stop.

So I decided to skip the odd TPN bag, in an attempt to at least slow down the weight gain and stabilise it. Neither Dr. Cusnir, Julie or Armando were happy about this, but it made me feel a lot better. It's the old "being in charge" ploy. I don't endorse going against doctor's orders, but I do believe in "you must do what you feel is right for yourself", and that's the gut feeling I decided to follow.

It worked. My weight stabilised, and it was a nice change for me to sleep without a TPN bag every so often. We still didn't know why any of this was happening.

* * * * *

We had discussed why and how to start the TPN, and I was very happy that I had it, but Dr. Cusnir and I had never discussed when and how to potentially stop it. Perhaps this was the perfect situation.

We spoke about it at our next meeting, and after briefly thinking about it, Dr. Cusnir agreed that we should try to stop the TPN altogether and see how my body would react to it. He was curious to see if I was happy to give it a go.

That's one thing I very much appreciate about him: he makes important decisions together with the patient, rather than ordering things. Dr. Cusnir is a "less is more" man, just like I am. For example, if you don't absolutely need medication, don't use it. If everything is fine, do nothing.

Not every doctor is like that.

We decided that I'd have to find a way to make up the remaining calories with liquid intake, but he trusted both Julie and myself to figure out a diet that would do the trick, bearing in mind I still couldn't eat.

Sadly it didn't work out well. I could barely find 1,000 calories between energy drinks and gummy bears to sustain myself. We had hoped to come up with something along the lines of at least 1,500 calories, but I just couldn't ingest that much. My GI tract wasn't up to the challenge, and I found that much of what I drank caused so much burning during urination that we all decided to put me back on a reduced TPN.

* * * * *

One day I came into the doctor's office, and Karen had an interesting idea. We spoke about many Keytruda side effects, and she complimented me on the fact that I had obviously tolerated the drug so well.

There had been reports about patients on Keytruda getting weird skin rashes, ghastly inflammations to the liver and kidneys, not to mention the usual suspects like nausea and diarrhoea.

I had none of that. Apart from the negligible bout of arthritis, I exhibited not a single adverse effect to Keytruda.

But as we spoke about this, Karen pointed out that an autoimmune related issue can sometimes affect the thyroid. The mechanism is the same as with arthritis, only that in this case, the immune system attacks the thyroid, leading to an inflammation, which in turn would cause reduced hormone output.

She decided to do an additional blood test and a thyroid ultrasound the same week. When the results came back, it turned out she was right: both T3 and T4 values were low, while the TSH was off the charts. "Looks like we've fried your thyroid", she said.

* * * * *

For something as tiny as the human thyroid, a bow-tie shaped wobbly bit the size of a piece of farfalle pasta, it's doing a rather important job for our wellbeing. The thyroid sits just below our Adam's apple, and usually we don't notice the little fellow unless he stops doing his job.

It's a little tricky to explain the whole system, but in a nutshell, and as I understand it, here's how this works:

The brain monitors the two thyroid hormones triodothyronine (T3) and thyroxine (T4). These are synthesised from iodine in the thyroid gland. To tell the thyroid how much of these hormones is needed, the brain sends a signal to the pituitary gland, which in turn synthesises something called thyroid-stimulating hormone (TSH). But because the brain is not directly connected to the pituitary gland, another ingredient is needed called thyrotropin-releasing hormone (TRH), which is produced by the hypothalamus.

So the brain realises that more T3 and T4 are needed, for which it tells the hypothalamus to make TRH, a hormone that the pituitary gland listens to. This then generates TSH, so that the thyroid can release T3 and T4.

Does that make sense? Well it does to the human body.

To me this is further proof that we humans have "happened" by a gigantic accident rather than been designed by somebody's grander vision or meticulous thought. A three-year old with a box of LEGO could come up with a more efficient system.

Anyway... so the brain indirectly regulates thyroid functions. In a fully functioning human body this system works well, but if something in this maze stops working, and not enough T3 and T4 are produced, the condition is known as Hypothyroidism.

Signs of Hypothyroidism among others are fatigue, sensitivity to cold, poor memory and concentration, as well as swelling of the limbs. Let's not forget uncontrolled weight gain. I was exhibiting all of these symptoms, but none of us had made the connection to it being caused by low thyroid output, until Karen did.

In addition, and thanks to my video diary, I had noticed that the pitch of my voice was much lower than it once had been. When I listen to YouTube videos from several years ago, I sound like an LP played back on 45rpm, whereas today I sound like a single played back too slow. I thought it was an encoding issue at first, but it turns out that this too is a sign of an under-active or non-functioning thyroid.

The recent ultrasound did indeed confirm that my little fellow was inflamed. Karen was right. What could we do about it? Apart from an eerie feeling of something bizarre going on with my body, I felt fine. At best it was slightly annoying.

Seriously, when compared to all the abdominal issues I've been having not too long a go, who cares about a puffy face and a bit of ankle swelling? One has to put these things into perspective.

* * * * *

To combat these symptoms, the easiest course of action would have been to administer artificial thyroid hormones, the T3 and T4 bits that were missing in my life. There's a medication called Levothyroxine that'll take care of it. It also goes by the name of Synthroid.

Dr. Cusnir was thinking about prescribing it to me, but in the end we decided to wait and see how my body would cope without it. Our concern was that by administering these hormones too early, my thyroid might get used to it and would eventually decide not to work ever again. We didn't want to risk that. So I lived with those bizarre symptoms for several months, waiting for my thyroid to kick back into action.

Every day I woke up with a differently shaped face. It was quite comical to a certain extent. Sometimes just knowing the cause for weird effects makes you rest easy, even if you can't control them. I tried keeping my regular exercise regimen up, and cycling certainly helped pump water out of my otherwise swollen legs. Putting my feet up when I was sitting down also did the trick and avoided some swelling in my ankles.

* * * * *

To this date, my thyroid hasn't come back to life, and since the beginning of 2018 I'm living with artificial thyroid hormones. It's a low dose of 100 mcg and comes as a small pill I'll have to take every day, probably for the rest of my life. On my current insurance plan it costs me about $13 a month.

It's a very small price to pay considering what else Keytruda has done for me. I can't even seriously count the arthritis side effect, because it came and went, and has never bothered me again.

Who knows, there's still a chance that over time, my thyroid might come back to life. The only way to test it would be to withdraw the Levothyroxine and see what happens. Maybe when I'm adventurous I'll do that (under medical supervision of course).

Since I started taking Levothyroxine, I've made a long-term observational video about the changes it brought on. Like so many other things, you can find it on my website supersurvivor.tv.

Trust me, it's hilarious.

Hurricane Irma

Just as I was getting better, and getting used to the feeling that perhaps things were panning out OK, it was time for hurricane season in Miami. Like every year.

2017 was different though, because we had an unexpected visitor that was likely to cause much greater damage than in previous years.

Perhaps you remember Irma, the strongest observed hurricane in the Atlantic in terms of maximum sustained winds since her bosom buddy Wilma. Irma was one of the strongest storms on record to exist in the open Atlantic region, costing a total of nearly $65 billion in damages. As in sixty-five thousand million US dollars.

We have a risk of hurricanes in our region every year, but with Irma things were different. The predictive calculations of such storms are never absolutely accurate, but there was a time where all indications were showing that Irma would head directly for Miami Beach, particularly the very southern tip of South Beach.

Which is where we live.

* * * * *

Preparing for such an event is a big issue around these parts. Ever since the early summer days each year, residents are advised to stock up on at least three days worth of water and canned food, as well as batteries, emergency radios, torches, blankets and many other things.

Most of us have these things standing by all year round, but during the peak months of August and September, everyone is advised to check if those supplies are still good to use. Technically, the Atlantic hurricane season begins on the 1st of June and ends on the 30th of September, with the last two months being the most active and potentially dangerous ones.

Since we've moved here in 2012, we've had two particular hurricane scares. Irma was the latest one. I remember people bulk-buying so much water and other supplies that the shelves in every supermarket were empty. And I thought the pre-Christmas season was bad!

DIY stores faced similar challenges, with people bulk-buying all the wooden planks and aluminium sheeting that was available to protect doors and windows. They are literally nailed shut with little consideration as to what it looks like.

Inevitably, the governor of Florida, Rick Scott during our time, declared a state of emergency in the potentially affected regions and ordered appropriate evacuations. He also advised us to keep our mobiles charged at all times, reiterated that we should stock up on the above supplies pretty pronto, and on this occasion made a point that price gouging is illegal all year round.

That's still not stopping scam artists charging $10 for a gallon of tap water or gas stations from casually increasing their prices.

* * * * *

I'm telling you, it's exciting times when a hurricane is announced. We had mandatory evacuations in Miami Beach and as far up north as Fort Lauderdale, and as far down south as Key West. Special bus services were in operation that would take all residents to the nearest shelters.

Most people followed the governor's orders and left the affected regions, some by bus, but most people left in their cars with a handful of possessions. We were all advised that "property and possessions can be re-purchased, but your family and your life cannot".

* * * * *

Preparing for a hurricane of Irma's caliber is a difficult challenge on a good day. For healthy people I mean. For those of us who were already living with several boxes full of sterile medical supplies in their bedrooms, relying on a weekly delivery of very heavy, specially formulated artificial nutritional bags, had a slightly more "advanced" challenge on their hands.

Like Julia and I.

Due to organisational reasons, we decided to ignore the mandatory evacuation order and stay in our home. Even if we wanted to, we wouldn't have been able to bring all the TPN bags and required paraphernalia with us to a shelter, even if we had found adequate transportation for the whole lot.

Ignoring mandatory evacuation orders is perfectly legal, but when people choose to do this, they must be aware that no emergency services may be reachable during the time of crisis. Should there be an emergency, we would be on our own.

We risked being without running water, without electricity, without mobile phones and without the internet, in short, there was a chance that all those creature comforts would disappear for a few days. In addition, our nearest hospital was evacuated too, as it was right in the centre of where Irma was predicted to make landfall.

* * * * *

I spoke with Armando's colleague Yomira about the forthcoming chaotic period, when neither transportation nor communication may be possible anymore. She agreed to send me a few spare TPN bags in addition to the usual seven, with additional supplies, in the event we should be trapped by the hurricane. I already had enough ostomy supplies to last me the next month, and we had filled several large containers with water.

We also had enough batteries thanks to the hundreds of half-empty ones I had kept from previous TPN infusions. To make use of them, I had ordered two good MagLite torches in advance. We had several other light sources too, and there was an ample supply of food for Julia. The emergency NOAA weather radio and several external battery packs were charged up, our mobile phones, laptops and Kindles were ready to go - all we had to do now was wait it out and survive.

* * * * *

The TPN did me a favour in that I never had to worry about food in a potential emergency. This would have clearly been the wrong time to start experimenting with a screwed up GI tract. I had nine TPN bags in total, stored in the filled-to-the-brink refrigerator, which should have been enough to see me through this challenging addendum to the already very eventful journey.

"What are we going to do if the power goes off", Julia asked me suddenly. She had a good point. A very good point. How long would those TPN bags last without a fridge? How would we know at which point they'd go off? And what would I "eat" at that point?

It's best not to dwell on those types of thoughts for too long, and instead deal with such eventualities when they come. Preparation is one thing. Freaking out is quite another.

* * * * *

Our main concern were the windows of our apartment. The building itself was rock solid. So was the front door, but the windows could be described as rickety old things in dire need of an upgrade. The ones in the bedroom don't even open anymore, and our large sliding door that leads to the balcony wobbles when the winds are mild to moderate, not to mention that they're not exactly water tight. Rain regularly find its way into our otherwise tiled abode, both underneath the front door, as well as through the balcony door.

Alfred, our landlord who used to live next door to us, was aware of it. In fact, several years ago he was ready to replace the whole lot, just before the previous hurricane scare hit Miami Beach. I remember negotiating a date with him, because the company that was going to do the job wanted to send a representative to take some measurements.

The day came, the dude showed up, parked his van in the alley behind the house and asked me to come down. I did as much, and he asked me where he could park. I suggested the ample off-street parking opportunities in front of the house, complete with credit-card accepting payment machine. At $6 per hour it's perhaps a bit pricey, but as far as I know, it's the only way to legally park your car around here.

"Why can't I just park in one of the many empty parking spaces underneath your house?" the curious fellow wanted to know. That would have been the perfect solution indeed, but because our apartment does not include a parking space, I had no access to a remote clicker to open the gate for him. Hence this was not a realistic scenario at the present time.

When I explained this to him, he simply took off, muttering something along the lines of "Screw this". We never heard from him again, nor have our windows been replaced since. I wonder if his company ever found out that they lost at least one lucrative job, on the grounds that their technician just didn't feel like finding a parking space that day.

So when Irma came, we made sure to tape all slits shut with several layers of silver gaffer tape, just in time before it started to rain heavily. To our surprise, and despite the scary noises all those glass panels made, the windows held on strong and are still with us today.

* * * * *

This whole "hurricane on top of everything else" scenario was another mental challenge, one that had to be mastered. We didn't want for this to drag us down emotionally, and I don't think either of us gave it a chance.

We saw this as yet another challenge to the elaborate test, another one we would most definitely survive. After all, Julia and I had a bit of practice in overcoming seemingly impossible situations.

I kept joking that because of my boosted immune system, infections had no chance of moving in on me. Thankfully we never had to put that theory to the test.

So many thoughts kept going through our heads, and in retrospect none of them were relevant. But when you're caught up in the moment, with a scary hurricane flying toward you at record speed, you don't see it that way. We were not sure if any of the neighbouring buildings would be around by the time the storm was over, and our minds kept coming up with bigger horror scenarios as time went on.

Would I get my next Keytruda shot on time? Would there still be a hospital standing that could do that? And if not, would my evil uber nasty super cancer come back and attack me again?

As I said, ridiculous in hindsight, but a very real threat when we noticed that our neighbourhood had become a boarded up and largely deserted ghost town. I've shot some footage during the days, in which everything from 1st Street up to 8th Street looked like an abandoned movie set (except for the myriad of TV crews and OB vans that were hoping for some devastating footage for increased ratings... predictable cheapskates that they are).

* * * * *

As you may have heard on the news about Hurricane Irma, Miami Beach and the surrounding areas were not as badly hit as the meteorologists had initially predicted. Irma hit the Keys very badly, but not our neighbourhood. We survived more or less unscathed.

Some of our neighbours further north or even west on the mainland of Miami were not so lucky. People lived without electricity for weeks. The streets were flooded, which lead to contaminations in the drinking water supply. Residents in those areas were advised to boil their water before drinking it to avoid infections.

We never had as much as a power outage. We never had flooding down here. What we enjoyed was peace and quiet, something we don't have every day in our neighbourhood. We had no flooding, and we barely lost the internet. But even that didn't matter, because thanks to the wonderful people from AT&T, we were given free LTE and mobile phone access for a whole week, so that people could communicate with one another and check the news.

* * * * *

The only casualty we had was our air conditioning unit. Due to heavy winds and rainfall, something irreparably broke. I have no idea how air con units work, but essentially there are two types we come across here in South Florida.

One is called a "wall box", which is essentially a fridge without a door, carefully embedded in a hole hacked into an outside wall, usually underneath a window. You see this in older buildings from over sixty years ago.

That system sucks.

A much better option is known as "central air", which is what newer buildings have since the early seventies. This system has air vents built into the walls, through which cool air is blown from a central unit in the house. For this system to work, the heat is extracted from the room and exchanged with an outside unit, to which the central unit inside the house is connected by some magic or other.

To me as a non-air-con-expert, all this means is press a button, and get cool air. When I press that button, and no cool air comes out, I'm hopelessly lost and have no idea where to start looking. I might be good with other household electronics, I might be a whizz-kid at administering web servers and I can even find my way around a programming language, but when it comes to cars or air con units, I have to throw in the towel.

I called Alfred, our landlord and next door neighbour, who had sought shelter with his family several miles away from Miami Beach and told him about the issue. He was very happy to hear that we were still doing well, and considering that he had his highly pregnant wife Alejandra with him, I was glad to hear that they had survived Irma just as well as we did. He promised to send a technician over as soon as one would be available to take a look at our broken unit.

That technician was Walter, a jack-of-all-trades kind of guy who was taking care of many aspects of the 5 storey building we are living in, home to a total of sixteen apartments. Walter was looking after several properties and we were glad he could make it. Unless you've experienced it first hand, you just don't know how uncomfortable the summer months can get in Florida if the air conditioning isn't working.

Walter took a good look at the compressor unit on top of the roof. I accompanied him, realising that I had never experienced the view from our roof before. I don't mind telling you it was quite a sight, especially because everything around us was still standing, minus several blown over trees and traffic lights.

Even though the air con unit tried as good as it could to spring into action again, it never lasted longer than perhaps an hour. In the end, Alfred told us that a team of specialists would drop by in a few days to try and fix the unit, or failing that, replace it completely.

* * * * *

Miami Beach was still a ghost town at this point. The governor had not yet lifted the mandatory evacuation orders, and residents were not allowed back on the beach yet - already present company excluded of course. We explored the neighbourhood to take stock of the potential damages the hurricane had caused, ignoring the curfews that were imposed by the police.

You can tell which trees have naturally evolved in this neighbourhood and which ones have not. Most palm trees looked exactly like they did before the storm. Many of them had lost some of their gigantic leaves, but I guess they would have fallen off anyway over time. Many of the other tree flavours though, planted here by Miami Dade County to give this tropical paradise a decidedly European look, had been ripped out by their roots. What a surprise!

There was foliage everywhere, branches, even whole trees littering the streets. Some street signs had been bent or pushed over, and there was glass underneath broken street lights. The plethora of construction sites had taken a toll as some of their building materials had been redistributed over the next block or two.

On the morning after Irma had passed, the skies were blue and sunny again, without as much as a hint of a breeze. Had it not been for the disarray on the streets, and those eerie alarms with computer voices in the distance, you'd ask yourself if there had ever been a devastating cyclone less than twelve hours ago.

People started taking their dogs for a walk again, one guy took his surfboard to the beach, in short, the residents had decided it was business as usual once more. We had stayed, and we had survived. We were all happy that it was over.

* * * * *

News came in from Alfred's crew that our air con unit was bust and needed to be replaced. This was unfortunate, especially given that Irma had managed to damage a great number of air con units in the neighbourhood, which meant that Alfred's crew couldn't just walk into the nearest DIY store and pick one off the shelf.

The only place that had a suitable unit in stock was based in Texas, and it would take several days for it to arrive. Thankfully Alejandra had lent us a nice fan that kept us cool during the nights, so it wasn't too big a deal.

When the new unit arrived, the air con crew came back to put it in. This took the better part of a whole day. Apparently we needed a new thermostat, a new outside unit, a new inside unit, and in excess of 5 men were needed to accomplish this task. I had the distinct feeling that "the air con crew" is the Floridian equivalent of that dodgy Boiler Guy from Sarf London.

Sadly the foreman didn't speak much English, and my Spanish is literally non-existent, which meant that other than a quick gracias and a handshake, we had not much to talk about. They did their jobs and left, satisfied that they had installed a working unit.

The good news was that we now had cool air flow again.

The bad news was that it sounded like an exact replica of a JT9D turbo jet engine during take off, one of those huge turbines commonly found on a Boeing 747 or Airbus 300.

THIS THING WAS SO NOISY THAT JULIA AND I HAD TO SHOUT AT EACH OTHER TO COMMUNICATE CASUALLY.

This was clearly an oversight, and all three of us, Alfred, Julia and I were sure that there was probably a quieter setting available. The air con crew promptly came back to take another look at the setup.

As it turns out, the noise was caused by the fan, which was blasting so fast because this unit was twice as powerful as the previous one. It would have probably been a good choice for a 5 bedroom house, but for the small one bedroom apartment we were occupying, it was perhaps a little overkill.

Sadly the air con crew could not slow down the fan, which meant that this thing was only ever going to work at the 500,000 BTU for which it was designed to blast. It was either that or no air conditioning.

* * * * *

We tried our best to live with it. Being without an air con unit during the summer in Florida is like not having a working combi boiler in the winter in London. It's just not something you can endure for long, particularly if you're powered by a bag of clear intravenous liquid every night.

As hard as we tried, the noise level simply wasn't working for us. I was supposed to rest and get my strength together for the upcoming penultimate surgery procedure, and this noise wasn't letting me sleep at night. I had only just recovered from severe sleep deprivation and I knew what a toll it had taken on my wellbeing.

I got in touch with Alfred again and explained our dilemma. This was a tricky one, because Alfred was an extremely nice guy, probably one of the nicest landlords I've ever had. The last thing I wanted to do was cause trouble for him, but this thing didn't do what it said on the box. Our living conditions had changed from "fantastic" to "difficult", and given my current health situation, I didn't want to move out into a quieter apartment either, just to avoid the noisy air conditioner.

It was a mental dilemma.

What was Alfred going to say realistically? All he was responsible for was to provide a working air conditioning unit. He had done that. The fact that I wasn't happy with the exact model or specifications, or the excess noise it was generating, well that was clearly my own problem. You could argue I was just being pernickety. The current white noise machine had been fitted and probably already been paid for. There was no way the air con crew were going to take it back for a refund.

Clearly there was no solution, at least none that I could see.

* * * * *

I remembered that I had been in a similar situation before. I remembered the Rubik's Cube, and the epiphany I had years ago. The same principle applied here.

I couldn't see a solution to the air con problem. But, that didn't mean that there wasn't going to be one.

I explained the situation to Alfred, strongly believing that together we were going to work this thing out, no matter how "outside the box" we had to think.

I'm telling you, had it been any other landlord, the answer would have been, "Go find yourself a new apartment, while I'm going to find some new tenants. Tenants are ten a penny. Sorry to see you leave, but if that's how you feel, so be it".

But that wasn't Alfred. Far from it. We were going to stay in our apartment, and Alfred was going to remain our landlord. It was the air con unit that had to move out.

And that's exactly what he said: "If it's so bad, I'm going to try and get them to replace it with a quieter unit, like the one you had before. It might take a little while to source one, but I'll take care of it, don't you worry my friend".

That's exactly what he did. Like he had taken care of so many other things relating to this apartment. This was meant to happen, like so many other things that were meant to happen on this crazy journey. I had no idea what the solution would look like, but quite clearly, a new air con unit was ticking all the boxes.

Seriously though, have you any idea how expensive it is to buy a central air con unit and have it fitted by a team of technicians? And to do the whole thing twice over? Do you know how few landlords would do that for a tenant?

Alfred did it. And we love him dearly for it.

So why is this a big deal, and why do I keep talking about this incident? Surely it was just another annoyance on the way that we could thankfully put behind us before I could go in for surgery. Like the whole hurricane thing.

Not quite. The air con story is an example that shows how important our own attitude and expectations are. Remember when I was talking about being open to small miracles in an earlier chapter?

This incident fits right in and follows the same pattern. When I phoned Alfred, I could have easily expected there to be no solution to this problem. I could have just as well expected Alfred to be stubborn and tell me we'd have to live with the noisy unit.

But I didn't do that. I kept an open mind. I chose to believe that there was going to be a solution that would give us a quieter air con unit, and at the same time for Alfred to remain our landlord. I didn't know what the solution would look like exactly, but I was certain that there would be one.

Had I instead closed my mind, expecting that there was no way to remedy the situation, I would have very likely experienced it that way.

* * * * *

There's another reason why I'm mentioning this incident in detail.

Alfred is an A-Player. He goes the extra mile. You don't meet people like that very often. But when you do, and you have a chance to work with them, remarkable things can happen.

Although he wasn't directly involved in my whole cancer journey, he played an important role in my story, kind of like a vital background character.

I'll tell you more about the importance of A-Players in a later chapter.

Hospital Clearance

After my remarkable cycling milestone in April, and despite the minor thyroid setback, I felt very positive. We were clearly on the right track. We could all see the changes Keytruda was doing, or more accurately, the miracles of recovery my own body was undergoing.

Think of it as the relationship a director has with an actor. The director doesn't act in the move or in the play. He provides guidance and training for the overall vision he has. Keytruda was the director, or perhaps the instructor, and my immune system was the actor. Both of them deserve credit and applause at the curtain call.

* * * * *

Although I felt as fit and comfortable as I was ever going to feel, we had to take care of quite a few things to put me back into a condition you could regard as "normal". There were all the various bits of my plumbing and GI tract that needed to be sorted out. We needed to remove my colostomy, disconnect my colon from my bladder and remove those fistulas. Eventually we also had to wean me off the TPN so I could start eating solid food again. And of course, the surgeons would have to remove any residual bits of cancer they would find on this occasion. I knew that at least one more surgery was on the cards, and it was going to be a massive one too.

The bladder part was particularly tricky, because we didn't know what the surgeons would find when they opened me up. All the information up to this point was based on various scans, which while useful, never reveal the whole picture. A whole host of surprises may be waiting as soon as they’d opened me up on a table in the operating room, at which point it's impossible to be involved in the "how shall we proceed" discussions as a patient - for obvious reasons.

* * * * *

We decided that October was a good month for the bigger of two surgeries, specifically the 19th of October 2017. The first stage would entail reconnecting my colon and focus on what parts of me would still contain cancer and remove them with adequate margins.

By this time, Dr. Caso was settled in at Baptist Hospital, Dr. Szomstein had already worked with him on a previous surgery session. Meanwhile, Dr. Cusnir believed that Keytruda had done all it could do for now and was happy for me to go ahead with the procedure.

The colon part sounded relatively straightforward. All Dr. Szomstein had to do was reconnect the rectum to the large intestine. But there also was that scary connection to my bladder, in at least two places. We didn't know the state of my bladder tissue or the remains of any tumour, or the location and extent of the diseased tissue.

We also didn't know if my radiated bladder tissue would hold any stitches, and if my bladder could actually be saved. No matter how fantastic Keytruda was working, the real answer to what my insides were going to look like would be revealed during surgery.

The whole procedure looked like a giant "if-then" diagram when drawn out on paper. Or, if you're familiar with computer programming, a huge switch statement with several if/then trees combined.

* * * * *

I had discussed the two possible colon scenarios with Dr. Szomstein a month earlier. Either, I would wake up without any bags and my colostomy would be removed. Or, I'd wake up with an ileostomy, which would be removed eight to ten weeks later.

The idea behind the second scenario was to let the tissue heal better. Colon stitches lower down the GI tract tend to heal slower than any patchwork higher up, and a potential leak could mean the difference between life and death, an emergency procedure, and up to three months in hospital. However, it all depended on the state of my tissue.

* * * * *

The bigger issue was indeed my bladder. Dr. Caso called me one day prior to the surgery, with more or less 18 hours to go. His office had told me that technically he was on holiday, but he made sure to come in on this particular day to attend the surgery. He cut his vacation short so that both surgeons would be available on the same day. The man clearly knew his priorities, and putting me back together was one of them. I felt honoured!

Dr. Caso explained that until this day, we had only ever discussed two possible scenarios for the bladder outcome. Either, the tissue was healthy enough to hold stitches, and any nasty parts could be removed if necessary. Should there be enough bladder tissue remaining afterwards, all I'd have to live with was a smaller bladder. This was an internal solution and aside from reduced bladder capacity, there would be no changes.

Obviously, that was my favourite and desired outcome.

Or, should the above not be possible, he would have to remove my entire bladder and I'd wake up with an ileal conduit and a urostomy, meaning I'd leak urine from my belly through a stoma for the rest of my life.

As it turns out, there was a third option that he wanted to discuss with me on this day. We had previously discussed the possibility of a neo-bladder. In this procedure, the whole bladder is removed and replaced with a new artificial internal reservoir, which is formed out of an unused piece of small intestine. This is a huge procedure and works well for many patients, but colon cancer patients might not benefit from it. Imagine a few years later you develop colon cancer in your neo-bladder. On these grounds, we ruled out such an option early on.

With Dr. Caso's third option, the idea was a mixture of the neo-bladder idea, combined with what may remain of my real bladder. Should my bladder tissue be healthy enough in principle, but after a partial cystectomy simply be too small for daily use, he could potentially create an ileal graft. This would mean attaching some of my ileal tissue and expand my bladder with a piece of small bowel. This would leave me with some normal bladder functionality, as well as an internal solution. However it would mean several daily self-cathedrisations, because the tissue would not contain muscles that can contract so that such a half-neo-bladder could be emptied when contracted.

* * * * *

I'm sure you can imagine how difficult it is to answer such a question. This decision dictates how you'd like to live to the rest of your life. I had never administered a catheter myself, even though I had used several over the course of this whole journey. It's by no means a positive or pleasant experience.

I had heard about the disposable ones Dr. Caso was talking about, which are often used by wheelchair users for convenience. These catheters are are much thinner, and I would very likely get used to the procedure with practice. Be that as it may, I found it very tough to imagine the scenario.

I knew what it was like to live with a colostomy for over a year, and I also knew how quickly I adapted to it. I knew there were solutions on the market for it, and it was very possible to live with it. In fact, it's child's play. Hence, my first gut response was "why not just go for a urostomy and an ideal conduit", on the grounds that I imagined it to be very similar.

On the other hand, an internal solution would mean no constant leakage, no bags sticking out, no wafer changes and no hernia. However, there was a real risk of a potentially and constantly sore urethra, combined with involuntary incontinence, should I not whack a catheter into me regularly.

The time Dr. Caso spent with me on the phone was over half an hour. It was a tricky decision, and I appreciated the time he took to talk me through this. He helped me make up my mind by explaining that ultimately, this was a "game-time" decision. One that had to be made without my being consciously involved, when I'm already opened up in OR. I can only imagine how extremely tough it must be for doctors to make such decisions on behalf of the patient.

I kept thinking that I could imagine myself living with one permanent bag attached. But there was a good chance - as there is with any colon procedure - that I was going to need an ileostomy, be that temporarily or even permanently. If that was the case, I would potentially have to live with two bags attached to me. It was not something I was looking forward to.

I did agree to the ileal graft solution, if Dr. Caso was confident that it would mean an improved life experience for me. He assured me that he would make a decision that would be best for my life going forward.

I trusted him completely. I knew he was going to make the right call. This long phone call alone showed how much he cared about a positive outcome. He was determined to make this work, just like everyone else on the team.

* * * * *

I think this is something that I have always appreciated about the whole team of doctors that worked with us on this journey. There was never a time at which it felt as if there were no options. There was always another plan, another discussion.

It was team work on so many levels. I had a say in every step of the way. Rather than any of my doctors saying "this is what we're going to do, whether you like it or not", we worked together and had an educated chat about where we would go next. Together. This included when to do scans, what medication to take and how often, or what types of procedures were necessary.

As an example, there came a point at which my doctors would have loved to take a biopsy of the inside of both my bladder and my colon. This would have been to check several months before a surgery if there was any active cancer left in my tissue. It would have involved a small camera travelling into my insides.

As much as I would have liked to oblige, I had only just recovered from two years of extreme hardship. I understood it would have been helpful, but declined their request on the grounds that I didn't want to go through with the procedure and risk the extra burden on my health.

Both Dr. Cusnir and Dr. Caso understood my position, and in the end we did not do that biopsy. I understood my doctors, and they understood me. Together, we made the decision that was best for me.

As dire as the station was, considering what was a stake at all times, I really enjoyed the relationship we had going.

What I can tell you though is that I had the very distinct feeling, given my wellbeing, combined with a very deep belief in something akin to "inside knowledge", that I was not going to have a urostomy. I knew this, deep down. I knew things would go extremely well during the procedure. It was more than a desire or a wish for things to work out well. I knew they would.

Much like I knew beforehand that I was already cancer free. This was not just a hope, or a "well, let's see what they find" attitude. It was more than that. Call it trust in a Higher Power, call it the belief in God, call it relying on The Universe to provide. In fact, call it what you will - I believe we're all talking about the same thing, the one humanity has been discussing for millennia.

It was that precise power that gave me this inside knowledge that told me three things: you are cancer free, they will re-connect your colon, and your bladder is going to be just fine.

* * * * *

It had been over two years since I had seen my primary physician, Dr. Lester De Leon. In preparation for my surgery, I needed a hospital clearance from him. It's essentially a piece of paper that says my independent primary physician has assessed my wellbeing, and he is of the option that I'm fit enough to survive surgery. To get that clearance, I had to see him and tell him about the devastating events of the last two years.

I got an appointment sometime at the end of September to see him. It was wonderful to reconnect. It was about time, and a lot had happened since his first diagnosis of that mysterious mass in my abdomen.

"Judging by the amount of notes I was sent over the last couple of years", he said, "it sounds like you've been through a lot. Tell me the whole story".

I took a deep breath and told him everything that had happened up to this point, and briefed him on the plan we had going forward. Anything from the home infusion antibiotics in the summer of 2015, the first big surgery in 2016, the cancer diagnosis, the bladder invasion and the blood clots, the first chemo that didn't work, the hospital that turned me away, the other hospital that didn't, the radiation treatment, the second chemo that didn't work, both fistulas, the TPN, the immunotherapy and the miraculous recovery I had made in only two months in 2017.

I had to summarise my case quite a few times during those days, and I always tried to be as concise as I possibly could. As hard as I tried, it never took me less than ten or fifteen minutes. There was just a lot to say.

Even though I'm explaining the events as matter-of-factly as I can, I usually cannot help but cry at any given moment. It makes listeners cry just as much. Dr. De Leon was no exception, and we both shared some extremely rough and thin tissues - the only ones we would find in the small treatment room on Alton Road.

* * * * *

After listening carefully, and after drying his eyes, he took a deep breath and paused for a beat or two. A short moment later he reflected with "Wow". He paused again. I appreciated this, the whole story was a lot to take in.

Then he said something remarkable to me, something that I'll never forget. Not only had he listened to the facts, he put them into perspective and drew a conclusion that had little to do with science or medicine. His words were, "If you have experienced what you've been through, and survived as well as you did, then you must have something very important to do on this planet".

He understood how remarkable this journey has been. How miraculous. Like myself, Dr. De Leon is not a religious man, but it was clear to both of us that my journey was not something you hear about every day.

He explained that not every patient can survive a trauma like the one I've been through, both from a physical and emotional standpoint. Many patients make the mental decision that enough is enough, and emotionally "check out of life". They may die as a result, even if there would be a chance to be healed physically. The mental component to survival is just as important as any medical component.

I could not have agreed more. Keep in mind I did not discuss the emotional side of my whole journey with him, all I told him were the facts of what had happened.

* * * * *

Dr. De Leon's explanation about the emotional component made perfect sense to me. In fact, I had a very personal experience happen to me very recently in 2016. Around the same time as I was going through my darkest hours of cancer survival, my uncle's partner of 30 years was diagnosed with brain cancer.

Dan was in his early seventies, my uncle Manfred about 10 years younger, and at first the two of them believed it might be the onset of a mental illness due to some strong behavioural mood changes. They dismissed it because Dan was a fairly moody bugger on a good day, so it was very hard to tell at first if he was just "himself" or if something drastic was happening to him.

When Dan was paralysed in one leg while they were on vacation in Portugal, they knew something was not right. Their first suspicion was that Dan may have had a stroke, so they flew back to their home in Berlin as soon as possible and had Dan checked thoroughly at the nearest hospital. Sadly the diagnosis was a huge cancerous tumour in his brain. The doctors operated on him the next day.

Dan's next course of action was chemotherapy, followed by rehabilitation exercises. His doctors were confident that within 6 months, he would have regained all cognitive, behavioural and motor functions.

However, a few weeks after the initial surgery, and only a few weeks into his chemo treatment, Dan refused to go ahead, opting instead to deny any further medication and food.

I have no doubt that he could have survived and live several more decades - but Dan made the mental decision that he no longer wanted to live. I did not agree with his decision at the time, but I respected it. I understand that perhaps for him, there was just no other way to cope with the disease. He had enough. Treatment options or the scientific reality of his case didn't matter. In the end it was his mind that shut down his body, and this process happened as a result of his thinking.

Dr. De Leon's words spoke very deeply to me. I was strong enough to survive both physically and mentally. Physically it was difficult enough to find a treatment that worked. And I'm grateful that thanks to Keytruda, we found a cure to my aggressive genetically induced K-RAS mutated crazy uber cancer.

But up until this day in his office, I hadn't quite seen how important the mental component was to my survival. The determination, the strong belief that I wanted to go on no matter what, and the trust I had in whatever we want to call a Higher Power to see me through this mess.

* * * * *

I had never seen my ongoing survival as something that may have happened for a reason. I hadn't thought about my future much recently, or how to live my life going forward. I would probably resemble the same characteristics of what it was like before.

But hearing it so clearly from Dr. De Leon, that there was a reason behind my survival, that it might mean I have a job to do here, really spelt it out for me: "Dude, you have a mission here. And if it's not obvious to you by now what that mission is, why don't you start by spending your time telling your story and give other people hope that they too can survive, just by sharing how it happened for you."

I really don't know if that is my mission or not. I have no idea if there really is a reason behind my survival, or if it was all a giant accident. I'll let you be the judge of that. I'm just the messenger.

No matter what my mission should be, if indeed there is one, I guess the least I can do is to share my story with you. Thanks for listening :-)

* * * * *

I hadn't been in Dr. De Leon's office since he had diagnosed me in 2015 with that mysterious mass and referred me to GastroHealth. I was happy that we made contact, and I couldn't help but feel as if things were beginning to wind down, coming full circle perhaps.

His office was where my journey had started, and now I was here again to reign in the end of my journey, getting clearance for the upcoming penultimate surgery procedure.

ERAS Meeting

Two days before the surgery was to commence, I was summoned to Baptist Hospital for a meeting and a routine blood test. Why they couldn't simply use the results of the one we had done a week earlier at Mount Sinai is anyone's guess.

As it was going to be a complex procedure, I was to meet with two nurses and discuss what exactly was going to happen during my next hospital vacation.

In particular, the meeting was about two things. One was a new way of sedating patients and dealing with them after surgery, on a new regimen called ERAS. At the time it had only recently been introduced to certain surgeries at Baptist Hospital.

The other one was a kind of "fitting session" with an ostomy nurse, who was going to mark the exact spot on my body where my (potential) ileostomy and/or urostomy would go. This would help the surgeons make the right incision in the operating theatre, so it was important to get this right.

* * * * *

My first meeting was about the new ERAS regimen, about which I was given the following facts. The nurse spoke so fast that I must have missed her name (for which I duly apologise). Perhaps I should have recorded our conversation and played it back at a slower speed. She was extremely friendly though and even took me to the nurses' private break room to give me a cup of coffee.

Here's what I remember:

ERAS stands for Enhanced Recovery After Surgery, a relatively new scheme in the US, which cuts down on hospital recovery time for patients. Traditionally (and without the ERAS scheme), patients are commonly told not to drink any fluids 8 hours prior to a procedure, thereby incidentally weakening them beyond necessity. It requires the hospital to administer super strong pain killers and intravenous fluids during the recovery period.

As a result, surgery in this state is more difficult, and the patient has a tougher time recovering, which while not impossible, takes the body a lot longer. It's been done like this for decades to ensure that patients can tolerate the general anaesthesia without throwing up and potentially dying.

With ERAS however, patients can drink up to two hours before surgery. They are given two bottles of special hydration solution to ensure they are adequately nourished before anaesthesia is administered and surgeons can begin to open them up.

As a result, lower dose pain killers can be used during the procedure, and because of adequate hydration, the recovery is much more gentle on the patients' body. Not only is this a much nicer experience for the patient, it also means they can leave the hospital quicker, costing insurance companies less money.

It's win/win for everybody.

* * * * *

This procedure was going to be my fifth overall surgery at Baptist Hospital, and my sixth experience with general anaesthesia. I already knew what the "traditional procedure" felt like (which was terrible), so I was excited to learn that ERAS existed and that my forthcoming procedure was going to utilise it.

I was even more excited to learn that none other than my very own colon specialist Dr. Szomstein, together with an anaesthesiologist buddy of his, was instrumental in spearheading the introduction of ERAS to Baptist Hospital in Miami.

* * * * *

The second nurse I met was Lourdes, an ostomy nurse. She was a lovely woman, extremely friendly and very attentive. Her much slower human pace made a lovely change from the whirlwind I had just been in with the previous nurse.

Lourdes was to determine the exact location of where the surgeons should put the new stoma on the right hand side of my body. I had often looked at that side of my tummy for the last few days in the mirror, thinking to myself that these are the last few days I'll ever see this piece of skin without any scars or wounds.

Anatomically speaking, the colon begins on the bottom right, then curves upwards to just below our chest, and then turns back down again to the left. So the end of the colon is on the bottom left side of the abdomen, before it disappears into the rectum. This is why colostomies are usually on the left hand side of the body.

Ileostomies are the output of the small intestine, which by definition ends just before the colon begins, namely on the bottom right hand side of our abdomen. This is why ileostomies are usually placed on the right.

As we started chatting, Lourdes was interested in my case and how I came to be at this point in my life and my treatment. Much like with Dr. De Leon a few days earlier, I told her the whole story up to this point, once again trying to summarise as concisely as I could.

Our chat reminded me of the one I had just had with Dr. De Leon a few days earlier. It took me probably fifteen minutes to tell here everything that had happened, but I also told her that I was very much looking forward to the surgery, as this would mean an end to my current state and hopefully the end of this chapter of my life.

Just like in Dr. De Leon's office, I didn't manage to tell her the whole story without starting to cry. Maybe it's the way I used to tell the story. I was glad to see that the same thing happen to Lourdes. She was very touched by everything that had happened to me, and she was overjoyed that the resolution seemed just around the corner.

I was genuinely taken by surprise by what she said next. Keep in mind that I haven't mentioned my meeting with Dr. De Leon to her, or what he said in reaction to my story.

Very much matter-of-factly, and after drying her eyes, Lourdes said, "You must be very special. Why else would you still be here?"

She explained that she too was of the opinion that I had something very important to do. I couldn't quite believe what I was hearing!

It's powerful enough to hear this message from somebody whom you've not spoken to for two years. But to hear the same thing from TWO different people who did not know each other in the same week, one of whom you've never met before?

I don't know about you, but it just doesn't sound like coincidence to me. I remember the words of that pastor from our prayer meeting, who said, "that's how God talks to you".

Here it was again, clear as day: "Dude, in case you didn't get this message last week, you have a mission. Don't you forget it!"

I remember thinking that I better take this "mission" thing very seriously. Moments like that have continuously inspired to write all this down. In case I ever forget.

* * * * *

Lourdes and I spoke about many technical bits as well of course, and she examined my rectus muscle while I was coughing, so that she could locate it properly. She then took a permanent Sharpie marker and put a small cross somewhere on the right hand side of my belly, a few inches below my belly button, and about an inch above it.

The rectus abdominus muscle by the way is the one that when trained gives you that "six pack" pattern on your belly. It can be split by a skilled surgeon and can hold a stoma better than other parts of the abdomen could.

* * * * *

"What if they decide I need both a urostomy and an ileostomy", I asked out of interest. I know it was a long shot, but it is something that technically could have happened. Both are traditionally sutured onto the right hand side of the body, one by necessity (the ileostomy) the other by... I don't actually know why. Maybe I should ask Dr. Caso when I see him next.

"That's a good question", Lourdes said. We both pondered on this eventuality a few moments. The more we talked about it, the more I shared a theory with her. I felt this was appropriate since she was of the same opinion as Dr. De Leon. She too thought outside the box and could see that there was more between heaven and earth than meets the eye.

Before either of us even entertained the idea of adding a second permanent marker cross on my belly, I said to Lourdes, "I can't explain it really, but I have a very strong feeling that I'm not going to get a urostomy. In fact, I'm pretty sure that if I'm going to get a bag, it'll be an ileostomy if anything".

And Lourdes said, "If you know that, then I'll only mark one location".

The Penultimate Surgery

On the morning of that penultimate surgery, I remember feeling extremely tired. I had some issues with my ileostomy, I was barely evading muscle cramps, I didn't have my TPN the night before, and much of my face was swollen because of my thyroid issue.

I was dehydrated as a result of the ileostomy, but thankfully I had a small bottle of that extremely expensive hydration fluid named ClearFast (Grape Flavour), which reminded me of a bottle of Gatorade. Two bottles will set you back $13, but thanks to Baptist Hospital, we didn't have to pay for them.

It had become routine for Julia and me to pack our bags and catch a Lyft ride over to the hospital. Neither of us was nervous anymore. We had done all we could do. Now it would be up to the surgeons to do their bit, and depending on what they would find inside me would show them their direction. We had our best people on the case, Dr. Szomstein and Dr. Caso. I had no doubt in my mind that they would do whatever was best for me.

Belief in my people aside, I had something else. I can't quite describe other than "insider knowledge", like I said in the previous chapter. I wasn't just hoping things were going to go well. I knew they would. I just knew.

* * * * *

A few days earlier this belief had already slipped out, when we visited one of our local coffee shops, Starbuck's at 10th and West Avenue. The location has since closed, but ever since we moved here, we kept visiting that store. As such, we got to know many of the lovely people who have worked there over the years.

One of them was Kantrell, very tall, slim, athletic guy, easy with a smile. We must have met in 2012, shortly after we had moved to Miami Beach. I used to be a lot heaver in those days, and Julia and I enjoyed sitting outside with drinks, hacking away on our laptops.

I hadn't seen Kantrell for a few months, and it was nice to bump into him again when he prepared my drink. This must have been in September or so, during which time we were setting up the surgery. Kantrell was shaking my Trenta Cool Lime Refresher, a long watery clear liquid concoction with a bit of green coffee extract, when he casually remarked, "Hey you lost a lot of weight, you used to be a lot chunkier. Everything alright?"

"I had cancer", I said. I wasn't aware that I had used past tense at first, not until a moment later when it happened again. "Shit", he said. "Have you beaten it?"

To my own surprise, and without having heard this from any of my doctors, I said, "Yes. I believe I have."

We high-fived each other, while Kantrell congratulated me on my success. Cancer was already history. It just slipped out. It came out so naturally, because that's how I felt. I didn't do this consciously either, and I was surprised to have worded it so directly.

Something inside me was already convinced that I had won the battle.

* * * * *

The CT scans up to that point were still showing some "bladder wall thickening", which could indicate cancer. They also showed this hydroureter condition, and an ultrasound showed that my thyroid was fried. The last live pictures we saw from the inside of my bladder were not promising either.

However, a lot of time had passed since then. I felt completely fine, even though my GI tract was connected in places it shouldn't have been, and I wasn't eating. None of that was active cancer. That was its legacy, but the cancer itself, that was gone. My body had already taken care of it. That's what it felt like to me.

I just knew it was gone. Just like I knew that this penultimate surgery was going to go well, and that it was a mere formality. It was about rectifying some plumbing, and to restore whatever it was that the cancer had destroyed. But it was not a cancer procedure.

* * * * *

The nurses in the pre-op suite knew me already, and many of them remembered me. As welcome as this made me feel, if you have so much surgery that the pre-op staff know who you are without looking at your file, that can't be a good sign. I kept joking about a rewards programme called the Frequent Suture Card, perhaps they should have introduced such a scheme.

I remember one of the pre-op nurses in particular, because she had such a very exotic name: Xylka. You don't see that on a name tag every day. I have a thing for extraordinary names, and this was one I wouldn't easily forget.

All the paperwork relating to my case had a big ERAS stamp on it, and it felt as if everyone was excited about the new way of putting patients under. Once I had signed the consent for the procedure, both Dr. Caso and Dr. Szomstein dropped by to do the same and have one last chat with me before they were going to sink some scary looking instruments deep into my body.

We even saw Dr. Martinez in pre-op. He had a patient in the pod next to us, and he was kind enough to say hello and wish us all the best. It was a very welcoming atmosphere, despite all the scary beeping monitors and the reason for our visit.

* * * * *

After what felt like hours of waiting, it was my turn to be wheeled along a very long corridor with several twists and turns. It's the part of the hospital patients usually don't get to see, or perhaps they hope you don't remember this bit. It was dark and slightly creepy, with several seemingly disused cupboards and equipment leftovers along the walls.

When we reached the operating theatre, Dr. Caso was already sitting behind a computer, probably googling "cystectomy" to check how to do the procedure. You want to be prepared should it come to that. We didn't speak much, everyone was already deep in "work mode".

It felt just like the last half hour before we used to go "on air" with a live programme. The tension is... well... tense, everyone is focusing on the job at hand, checking that all the feeds are in the right place, that the bumpers are queued up and that the comms are working. It's about to get serious when the transmission suite counts you in, at which point, everyone's on auto pilot.

I remember being cold. Like really cold. I was close to shaking. I never liked that feeling, which is part of the reason why I moved to Miami. Had I known how "efficient" those air con units could be. So close to any surgical procedure, or even for something as simple as a needle stick, I didn't like feeling cold because it meant that my muscles were not as relaxed as they could have been. More relaxation helps whoever is wielding those scary instruments, and I was determined to make my body as cooperative as possible.

Because of the ERAS procedure, I was given a small dose of Morphine while I was still awake, to the back of my body and into the spinal cord. This was new for me. On all previous occasions, the anaesthetist joked with me, put me under, and then the good stuff was administered.

Not this time. For the scary meds to be injected into my back properly, I couldn't lie down. I had to cling onto a large and very warm nurse, like a primate clings to his keeper. She was very nice about it and it certainly warmed me up a bit.

When they were ready, I could lie down on my back again, still freezing, examining the theatre. It was jam packed with equipment and people, not including Dr. Szomstein who was probably still preparing himself (or, knowing him, quickly doing another surgery in the room next door).

* * * * *

I don't remember much else, until I woke up again. For me, only a few moments had passed. I felt like I dozed off at the bus stop, waking up in a different neighbourhood.

It was the recovery suite, where a nice but very busy nurse was looking after several patients. This room is located very close to the pre-op suite, looks very similar, but feels a lot more quiet and less hectic. One patient was snoring nearby, obviously enjoying the recovery period.

I remember feeling like that after my first major surgery. I had been heavily sedated and could barely move, let alone articulate myself. This time it was very different. Since I had not been deeply sedated, there was a lot less scary medication in me, which meant that I came to quicker. Mentally that is.

Physically my body was not responding well to the commands I was giving it. I tried to communicate with the nurse, to get some details on how the procedure went. She didn't take me seriously at first, probably thinking to herself that I was just a tad delirious.

When I woke up, my main problem was that I still felt cold. A lot colder than when I was wheeled into the operating room, which already felt freezing. I had no idea there was a level below that feeling. I kept thinking of a story I once heard about people freezing to death. It's supposed to be a very gentle death because there's no pain involved. When our body temperature falls below a certain level, you feel relatively cosy again, or at least so I've heard.

I tried to make the nurse understand just how cold I felt. Eventually she wheeled one of those professional measuring devices over, the one with which nurses can take your temperature, take your pulse, measure your blood oxygen levels and take your heart rate all at the same time. I've seen pretty much every model that's in use today, some displaying the temperature in Centigrade, some in Fahrenheit. It comes in handy to know both scales at times.

To both my own and her surprise, the unit wasn't working. She put the measuring device into my mouth and underneath my tongue, where a heat pocket will give us a relatively accurate temperature reading. After a few seconds, the unit should beep and display how warm I was. But it never beeped.

Thankfully she had another one handy that she duly wheeled over to replace the obviously broken and perhaps hopelessly overworked little fellow next to it. She tried again with this new device. Twice. A third time. The result was the same: the unit never beeped, and it never displayed my temperature.

I briefly entertained the idea that perhaps reality was beginning to disintegrate. Apparently some quantum physicists believe that reality isn't at all what we think it is, which means that maybe there is no such thing as "measurable body temperature", and we were witnessing this fact right now.

The nurse had obviously not read the same science (fiction) article that I had read and didn't want to give up, so she found a third unit to try to take my temperature with. Cut to Richard Attenborough in the pod next to me, saying to Jeff Goldblum's character, "We had a THIRD unit..."

The third device didn't work either. Imagine that! Eventually she pulled out one of those $10 digital pocket thermometers from Walgreen's, which finally gave us at least an approximate reading on my temperature.

Turns out I was 34 degrees Centigrade (94 Fahrenheit), several degrees lower than the human body should be. This phenomenon is known as Hypothermia. It can happen when the body does not generate enough heat to sustain its healthy temperature, which is around 37 C (98-99 F).

* * * * *

So I had learnt two things that day: one, those all-in-one units do not respond when a patient is below 35 C, and two, that's what Hypothermia felt like. Although I wasn't exhibiting any symptoms other than feeling extremely cold, this is something the nurse took very seriously. She immediately sent for something called a Bear Hugger, a hot air machine designed by 3M for patients in my condition.

The system consists of a medium sized box that pumps warm air into a large hose, which in turn is connected to a very thin disposable air bed. In it, warm air circulates, warming up whoever is covered by this wonderful invention.

Fun Fact: 3M, short for the "Minnesota Mining and Manufacturing Company", used to be one of the world's biggest manufacturers of video and audio tape. Their Betacam SP cases were always extremely difficult to open, and the tapes suffered from vast amounts of dropouts. I'm happy to report that their Bear Hugger system works much better than any TV programme looks when recorded on 3M tape stock. Fact!

As soon as the Bear Hugger started to kick in, I felt like I sank into a tub of nice warm water, not too hot and not too cold. It was exactly what I needed to drive the freezing feeling away. It would take hours for my temperature to increase and stabilise.

* * * * *

In the midst of all this Hypothermia treatment, Julia was notified and joined me, after she waited patiently in the dedicated reception area for family members. She could see at which stage of the procedure I was at on a monitor in the waiting area, where a nurse would relay any information the doctors were giving out.

Julia told me that over eight hours had elapsed since she saw me last, since I was wheeled into the operating theatre. It was now early evening, even though my internal body clock told me it was still morning. I'm telling you, perception can play tricks on you. Nothing is as it seems, even if we think we know everything.

All the nurse had told me about my condition was that the procedure went very well, but she didn't tell me any details. Julia knew a lot more than I did, and she told me what had happened during the last eight hours.

Julia had been waiting patiently for three hours, getting the occasional status update as to what was being done to me, when Dr. Caso appeared in the waiting area. He came over and told Julia something rather remarkable, something both surgeons had a hard time believing at first.

The immediate good news, she told me, was that I still had my bladder. Amen to that! It was not necessary to remove it, except for a very small part which formed the fistula.

Interestingly enough, as Dr. Caso told me later, there was only one fistula to the bladder, but two parts of my GI tract were connected to the same spot. So I only had a single connection from the bladder to the rectum as well as my small intestine, all fused together in the same spot. This spot was much smaller than they had assumed, which was fantastic news.

They dealt with the bladder issue first by removing any attached intestinal material from it. To check the inside of my bladder, Dr. Caso took the whole thing out and cut it in half, much like you'd butterfly a thick steak. This allowed him to have an in-depth look at the inside of my bladder, so that he could asses if it was still usable, and if any residual cancer tissue was still present.

As gruesome as this sounds, here's the remarkable discovery both surgeons made, and from what I understand, they both had an equally hard time believing what they saw.

There was no more cancerous tissue left in my bladder.

Let me repeat that for you: There was no more cancerous tissue left in my bladder.

Zip. Nada. NO CANCER!

Nothing.

All that damage that my cancer had done, this tumour that was growing out of control, the one that couldn't be stopped with chemotherapy - it was gone, and not a single shred of it was left behind. It had simply disappeared.

Furthermore, the necrotic tissue that Dr. Caso saw during our cystoscopy now looked healthy and normal. It was as if this whole cancer experience was a bad dream. There was evidence that something weird had happened, but there was no cancer left for them to remove.

Intrigued, they took a great many samples of tissue, just in case there was still anything nasty lurking that was invisible to the naked eye. A pathologist closely examined the samples on the spot (they really were taking no chances), but he agreed that nothing cancerous could be detected. The reports for an in-depth analysis would come back a few days later, just to make sure.

This was incredible. Unbelievable.

* * * * *

By the time Julia and Dr. Caso spoke, Dr. Szomstein was still operating on me, debating whether to give me an ileostomy, or take a risk and connect me up without a bag. The latter option would have meant this would have been my last surgery. Being the cautions fellow that he is, he went for the ileostomy.

As Dr. Caso said, "I just left him to it after I had done my part and put your bladder back together. There was nothing more I could do at that point. He's still unsure which direction to take".

Turns out that Dr. Szomstein took several more hours to re-connect my colon to my rectum, get rid of my hernia, close up my colostomy, separate the top of my colon from my small intestine, and suture the latter onto the right side of my belly. Following that, I had to be closed up. All that took in excess of four hours.

* * * * *

It took a bit of time until I was wheeled upstairs into an inpatient room, and thankfully I got to keep the Bear Hugger machine until my temperature had stabilised. As soon as the drugs had worn off, I could take a closer look at what they had done to my body. There were a few items I didn't recognise and was curious about.

My closed ex-colostomy was covered by a giant bandage, underneath which a small white plastic bit was popping out. It looked like the stick from a lollipop, perhaps one inch in size (that's 2 cm). As I later found out this thing is called a Penrose Drain, a soft piece of tubing that surgeons implant subcutaneously so that a wound can drain excess liquid. It helps heal the wound, and any pus or blood could leak out and onto the bandage.

When Dr. Szomstein removed it a few days later, I could take a closer look at the Penrose Drain. It was much longer than I thought at first, and it didn't look like a lollipop stick at all. Further inside the wound, the device was flat, perhaps eight inches in total, and two thirds of it were covered with holes so that liquid would be allowed to flow inside the small pipe at the end.

As surgeons sometimes do, they forget that patients aren't always sedated. You'd think the dialogue between the doctor and the patient would give it away. When it was time to remove the Penrose Drain, Dr. Szomstein said, "Oh that, yes we can remove that already", and then just ripped it out of my wound without notice. It wasn't painful as such, but nevertheless a slightly shocking experience. At the same time it made me laugh. Julia and I have fond memories of such impromptu actions. He did something similar with a couple of staples that were coming out. Dr. Szomstein and his skilled fingers require no additional instruments.

It looked as if my ex-peristomal hernia around my ex-colostomy had disappeared too, thanks to his skilful hands during surgery. It had grown into something annoyingly large, and I asked Dr. Szomstein how well this went, and if there was a chance for my hernia to come back.

He started laughing when he explained the details. The hernia happened as a result of there having been an opening in the rectus abdominus muscle, the one that creates the "six-pack" look in slim athletic people. As time goes by, the natural pressure of the abdominal cavity gently squeezes anything it can find through that opening, which ends up being small intestinal material (I guess because we have so much of it down there).

It's like slashing a hole into the bottom of a sack of grain, through which most of the grain immediately tries to escape, screaming "Yay, freedom!"

The hernia grows because the artificial opening in the muscle stretches out over time, leaving room for more small intestine to creep in. Before you know it, this thing is the size of a football (sorry... soccer ball).

Dr. Szomstein explained that when he opened me up and was ready to close off my colostomy, he found that close to three feet of small intestine had escaped through that hole. That's about one meter. No wonder my hernia was so big. It made us all laugh when he demonstrated how he pulled out all that material, like a sailor who was pulling a long piece rope out of a coil.

It was hilarious!

To make sure the hernia wouldn't come back, all he had to do was to close the hole in the previously split muscle and wait for it to heal. In all likelihood, that would be the end of future herniations.

On a previous visit to his office, we had discussed what would happen if my new ileostomy would also develop a peristomal hernia. I didn't want to go through the same hernia malarkey again, but Dr. Szomstein didn't think of this as a big issue. With a slightly cheeky smile on his face, he simply said, "If that happens, we'll remove that hernia as well - no problem".

The man could instil confidence like no other. My attitude towards him had changed so much over the three years we had known each other by then. I clearly remember the very ambivalent first meeting in his office back in 2015, at a time when I was so afraid of any type of surgery, particularly abdominal ones.

Now I trusted Dr. Szomstein with my life, on a routine basis. He had performed more surgeries on me than I can remember. He had a solution to the most complex situations. He was another true A-Player. You don't get to meet people like that very often. With someone like that on your team, the worries about scary surgeries simply fade away.

Did I mention that he even implanted my subcutaneous port? I think I haven't. My first oncologist at Baptist Hospital requested that I get one, in preparation for all those scary chemotherapy infusions. This was in early 2016 after my first surgery.

I got the clearance from Dr. De Leon, went to Baptist Hospital on the day, and was very pleasantly surprised to find that Dr. Szomstein was going to be my surgeon. Again.

When he visited me in pre-op, just before the procedure, I told him that I had assumed he only deals with tricky and complex abdominal matters. We had to laugh when he said, "Yeah, I do ports on the side".

* * * * *

Right in the centre of my belly, a massive bandage patch covered up the big scar that had to be re-opened to give the surgeons access to my abdominal cavity. The wound was healing well, covered with two dozen staples. The incision was a bit longer than before, ending just above my pubic bone, I'm assuming so that they had full access to my bladder.

On the right hand side, there was my new ileostomy. Although it looked shocking, it's much easier to see such a setup the second time around - particularly when you also have proof on the left hand side of your body, showing that these things do not last forever. My "insider knowledge" feeling had been right at that meeting with Lourdes. As it turned out that additional marker pen position for a second bag was indeed not necessary.

My new ileostomy looked exactly like my colostomy, slightly larger and swollen due to the fresh surgery, but otherwise I couldn't see a difference. The bag was larger than the ones I had before, and when Dr. Szomstein and I spoke about the new challenges that would await me, he told me that I'd have to make sure to stay well hydrated at all times. Other than that, he was happy for me to start eating again literally two days after surgery.

Although that's nice to hear, I had no idea how my body would react to solid food again after such a long time on TPN. Would my GI tract remember how to do it? Would I have to chew some gum to exercise the muscles in my mouth again? The last time I chewed something had been months ago.

It was important to try it out though, especially here at Baptist Hospital, where I was surrounded by professionals that could be summoned quickly should things not go as planned. Before Dr. Szomstein left to order me a tray of lunch, he pointed at my new bag and said, "All that full of poop, that's what we want to see".

Guess what they served me as my first meal? You'd think perhaps we should establish a diet slowly and see how my body would react to solid food in general.

But no. When the tray arrived, we couldn't believe it when we saw a juicy steak and mashed potatoes! This is America after all.

I know, double shock. Not only do they serve steak and potatoes as hospital food (which was delicious by the way); my body didn't seem to have an issue with digesting it either. That was great news. The only thing I'd noticed was the presence of food inside me. It was something I was no longer used to after being empty and on a fast for several months. I didn't like that feeling very much at first, I could feel every movement of food going through my colon, but eventually I got used to it until it returned to normal.

* * * * *

One additional technical bit that peaked my curiosity was a transparent reservoir dangling out of the right side of my body. It was shaped like a squashed hand grenade, attached with a safety pin to my hospital gown. It looked like it was filled with blood, and I've noticed that the nurses who looked after me emptied it regularly, always squeezing it flat again after use.

This peculiar device is called a Jackson Pratt Drain, or JP Drain for short. It has a similar job to the Penrose Drain, but is used in situations where it is expected that a wound leaks a lot more liquid. The squashed nature of the grenade shaped device means that liquid doesn't just flow in it; it's quite literally sucked out, albeit with very low pressure. In my case, the tip of the JP Drain was embedded deep inside my abdominal cavity and would aid in drying me out from the inside, helping the healing process.

The safety pin was there for logistical reasons, so that when I got out of bed to move around, the grenade wouldn't accidentally rip its cord out of my body. Just like a real hand grenade: once the pin is out, there's no putting it back in to prevent disaster.

* * * * *

Thanks to the ERAS procedure, I was a lot more lucid and awake straight after the surgery. The recommendation was for me to chew a lot of gum to get internal juices flowing, which would kick-start my GI tract. The more such parts of the human body are used, the better it is for the overall recovery of a patient.

In addition, it was recommended to move around once or twice on the next day after surgery. We had been given a four day plan that outlined these ideas. When we read it, we thought they were mad. Full open surgery on day one, by day two you're walking around twice a day and start eating light meals, on day three you walk around at least three times if not more, and on the fourth day you pack your bags and get discharged.

Really? After a full open surgery? Wouldn't the staples pop out when I started to get out of bed?

It was fascinating to see that my fears were unfounded. Even on a relatively low painkiller such as Tramadol, I had no problem getting out of bed to walk around the corridors. Sometimes I felt fit enough to do as many as four rounds, and although this was exhausting, I felt very little pain if any. It was remarkable.

* * * * *

We still had that slight issue with my elevated kidney values. The endless infusions of saline solution that were supposed to keep me hydrated had a slightly detrimental effect on my weight. My tissue started to collect a lot of water, which made me gain at least two pounds a day. It was obvious where the liquid went: into my ankles, my face and into my abdominal cavity.

I remember us coming back to the room after a long walk on the corridor, the nurse had just come in to make the bed, and my JP Drain was full to the brink. It could only hold maybe 100 ml. I emptied it out while I sat on the bed, but when it was empty, it started filling up again while I watched. I had to do this four times before it stopped filling itself, indicating that almost a whole pint of free-flowing liquid had been collected in my abdominal cavity.

* * * * *

As with every big surgery procedure, I ended up with a catheter. Naturally. I hadn't had enough catheters in my life. I needed another one. Admittedly, after my bladder had been butterflied and re-assembled by the skilful hands of Dr. Caso, I did understand the need for yet another catheter.

There was something remarkably different about this one though: it was a suprapubic catheter, also known as a vesicostomy or epicystostomy. This is a catheter that is not placed through the urethra. Instead, Dr. Caso embedded it into my bladder before he sewed it up with dissolvable suture. The device is a standard straight tip catheter, with inflatable balloon just below its tip, but it leaves the bladder through an artificial hole and exits the body just above the pubic bone.

Believe it or not, this is classed as another stoma, albeit a very small one. Catheters inside the urethra are annoying, so Dr. Caso chose the suprapubic type because it was easy to place while he was working inside me, and because it would be less annoying to wear - particularly considering that I'd have to keep this thing in for at least four weeks while my bladder was healing.

Maybe he just wanted me to experience every type of catheter there is on this planet, who knows. I don't think that was his reason though, because I remember him saying on a previous occasion that he was hoping he would never have to give me another catheter ever again. This one was unavoidable, and I have a feeling he wanted me to have the least annoying option available.

A suprapubic catheter brings new challenges that I hadn't anticipated. Everything was fine in the hospital, where it was very comfortable to wear and walk around with. No longer did I have a garden hose irritating my genitals during every step I took. That was a great start.

As soon as I got home though, I noticed an extremely annoying tickling sensation inside my bladder. It felt like the instant urge to urinate, but with there not being any urine in the bladder, this was clearly a phantom message.

At first we thought this was caused by my bladder genuinely filling up, and perhaps the catheter was not running. That would have been dramatic, because the tissue hadn't healed enough yet to deal with that kind of internal pressure.

Thankfully this was not the case. As it turns out that the sensation was indeed caused by the balloon or the tip of the catheter rubbing against the inside of my bladder, because of which my bladder muscle started to contract a little. It was literally being tickled pink.

Now that I knew what it was, there was no need to panic about it. I had this sensation after my first recovery walks, or when I sat in a certain position on a particular type of chair. All I could do to avoid this sensation (which was driving me crazy by the way), was to switch chairs and/or positions and sit still for a while. It also helped to give in to the urination feeling and try to relax and urinate. A few minutes later, my bladder had relaxed and was doing OK again.

* * * * *

A day or so after the surgery, while I was still in hospital, Dr. Caso came into our room and told me he couldn't sleep well since my surgery. Something had been on his mind that he wanted to check out, even though his urological partner in crime at Baptist Hospital told him not to worry.

"I have this feeling that the catheter may not be placed as well as it could be and I'd feel a lot better if I could quickly check it out", he said to us. Since the suprapubic catheter is essentially facing upside down, there is a small chance that it's inserted too far in, which could mean that the opening at the tip is covered by the entrance of the urethra. As a result, the catheter might not flow properly, which could have devastating consequences to those fresh stitches he had placed.

The only way to make sure that the catheter was in the right place was for him to have a look inside my bladder, with the help of a cystoscope.

Unlike the one he had during our last cystoscopy at his old office, this one was not an electronic model and did not beam pictures onto an attached TV set. Instead, this fully optical marvel of technology allowed only him to see the inside of my bladder through an eyepiece, akin to what you'd find on an SLR camera.

I was relatively used to having items inserted into my urethra by now. Besides, I wanted to make sure everything was working fine with this new type of catheter, and I thought it was important that Dr. Caso could sleep better at night.

He didn't have a nurse with him and thought at first he was able to it all by himself, but because it was such an impromptu procedure, he only realised after he put sterile gloves on that he needed to put together a few other bits necessary for the job. As was often the case when we were at the hospital, Julia volunteered to pick up the pieces and assisted Dr. Caso in doing the cystoscopy.

After putting the correct sized gloves on, she handed him syringes, pads, wipes and other paraphernalia. It was great fun for me to watch. Who else would you rather help with such an important job than your own wife, Julia Versluis, RNIB?

Dr. Caso's sleepless nights were indeed warranted: he did find that the catheter was too deep for comfort and pulled it up several centimetres. I didn't notice a difference after he adjusted the placement, but imagine what could have happened a few days after we had been discharged? Imagine my fresh bladder stitches rupturing in the middle of the night? The phrase "back to the drawing board" springs to mind.

On this occasion, Dr. Caso told me that when they uncovered my bladder during surgery, it was the size of a walnut. Not exactly big, considering it once held an Imperial pint size volume of urine. He assured me though that once the catheter was removed, the bladder tissue would stretch again over time. It was never going to be as big as it once was, after all a decent piece had been removed - twice in fact, once by Dr. Szomstein in 2015, and now again by Dr. Caso in 2017.

In fact, Dr Caso's colleague had mentioned that thankfully, the human bladder is a very forgiving organ.

It's a miracle I still have a usable one.

Bladder 2.0

A month after we had been discharged, Dr. Caso asked me to have a cystogram, also known as a cystography. This is a procedure in which some scary contrast solution is pumped into the bladder, and once it's full, an x-ray image is taken. This allows a radiologist to check if the stitches on what I'd like to call Bladder 2.0 have healed appropriately. Dr. Caso would be able to tell if the previously radiated tissue was strong enough to have healed, and if I could use my bladder again like I had done before this whole ordeal started.

As Baptist Hospital is so far away from our home, I asked him if I could have the procedure done at Mount Sinai to save myself some travel time. He agreed, and thankfully he still had many friendly contacts available at his previous home. Should there be an issue, he told me to let him know.

With the doctor's order in my hand, I phoned Mount Sinai and tried to make an appointment. It wasn't urgent to do this, but I was aware that the sooner we would know what's happening on the inside of my bladder, the quicker I would be rid on this tickling catheter.

"I'm afraid the earliest we can fit you in is three weeks from today", a friendly lady on the phone told me. The whole department was booked up until such time. It had already been four weeks, and I didn't want to wait another month to have this sorted out. I was eager to get on with my life, or what was left of it.

So I decided to drop Karen an email and ask her if she or Dr. Cusnir might be able to schedule an earlier appointment for the procedure. It was a long shot, and if the x-ray department was full then there was nothing that could be done, but I thought it was worth a try.

She replied only two hours later, saying "How does this week Friday sound?"

I had to laugh when I read this. It's who you know, I thought. I wouldn't have been able to get an appointment on such short notice, no matter how charming I was going to be with the other lady on the phone. A doctor's "stat request" always beats a patient's phone call.

* * * * *

That Friday came, and I waited for a technician to show me into the cystographic x-ray room. He did't say much, and I wasn't sure if he knew what I had been through. I tried to explain that the whole "pumping liquid into my bladder" thing wasn't something I was looking forward to, and given the walnut sized capacity of mine, could he perhaps be extra careful when that gallon sized tank I spotted was emptied into me.

He didn't seem phased by what I had told him, and all I got as a response was, "You can discuss all that with the radiologist, he'll be here in a moment".

Oh good. There was someone else involved in this procedure, not just Mr. Unconcerned over here.

About fifteen minutes later, the radiologist came in to shake my hand, a Latino fellow in his late thirties. "I'm so sorry it took a little longer, but I was reading your file", he said. "Hey man, you've been through hell and back - congratulations that you're still with us!"

I was so relieved to hear that. He knew this wasn't a routine procedure on a patient with a healthy bladder. Mine had been on the proverbial chopping block not too long ago. I explained my concerns, and that I couldn't make promises as to how much of that contrast solution would physically fit into my bladder.

"Don't you worry, we don't need much - just tell me when it gets uncomfortable", he said and disappeared into a small room next to the stretcher like machine I was lying on. He could speak to me through a microphone, and we could see each other through a rather large glass window.

Meanwhile, the unconcerned technician clamped my catheter, attached the oversized bottle of scary liquid to it, and with a touch of a magic button on the inside of the radiologist's room, 100 ml of the solution was squeezed into my bladder. In about three seconds.

I believe I said something like "Hmglmphnhs", to which the radiologist replied, "Everything OK? You think we can put a little more in?"

I understood that the more solution was in there, and the more pressure was exerted onto the bladder, the easier it would be for him and Dr. Caso to assess if it was up for the challenge of holding on to all that future urine, so I tried to comply.

We settled on a total of perhaps 150 ml, and I don't mind telling you it was weird to hold it all in. To my knowledge, this was the first time I had any liquid in my bladder since the surgery. Holding on to it was a quite the challenge. The radiologist asked me to turn over, on one side first, then the other. Meanwhile, the unconcerned technician re-positioned the big expensive looking contraption above my abdomen, which would undoubtedly blast a good dose of x-rays through my body.

When we were finished, my catheter was re-connected, leaving me with a very relieving feeling. Yet another challenge was over.

"Give me a few moments while I have a look through the pictures", the radiologist said. Several minutes passed while I got dressed, hoping for some good news.

When he reappeared from his room behind the big glass window, his face was a little sadder than it had been before. "I'm so sorry", he said, "but I've found evidence of some contrast solution beyond the bladder, which is where it doesn't belong. Looks like it hasn't healed as well as your doctor had hoped. I'm really sorry about this", he said apologetically.

That was a shame. It was a long shot. I mean, what were we expecting, a miracle? My bladder had been through too much already to survive a complete split in the middle. Of course those dissolvable stitches to previously radiated and necrotic tissue weren't going to hold.

I appreciated his honesty and was shown out into the waiting area by Mr. Unconcerned. It was a long way through rather scary corridors that all looked the same, so I appreciated the technician accompanying me.

Under "normal" circumstances this would have been the perfect time for chit chat. But I knew this guy didn't care, so I thought about the next steps in this process. What would Dr. Caso suggest we do now? Another surgery procedure? Should we just wait a little longer? Would he be able to do some additional suturing cystoscopically? Was that even a word?

We had just about reached the door to the waiting area, when I heard somebody running behind us. It was a long corridor, and I didn't have my glasses with me, so all I heard was running and mild shouting for a while. It appeared as if somebody was running towards me.

It was the radiologist. He had a big smile on his face. "You know, I've just had another look on a larger and more accurate monitor. I was going to do this anyway before I start writing the official report. But considering your case, I did it immediately. I'm so glad I caught you", he said.

He explained that what he had previously assumed to be escaped contrast solution was not caused by gaps in the stitches. Instead, my no-longer-in-training sphincter muscle had let a few drop through into my urethra, and that other monitor made that visible.

My bladder was fine, and the stitches had healed perfectly after all.

Before he departed, he said "My report will reflect this, I'll send it off to your doctor this afternoon. Sorry about the confusion, but I wanted you to hear the good news from me as soon as possible".

It was a miracle after all!

* * * * *

A few days later I had an appointment with Dr. Caso. I had never seen his new office before, nor had I set foot into the new Miami Cancer Institute, a shiny new building we had seen being constructed ever since we came to Baptist Hospital in the summer of 2015.

It was all glitz and glamour, housing all the cancer specialists at Baptist as well as the new infusion suites, and of course that new proton radiation machine. At the time it was only the second one in the state of Florida, the first one having been installed in a facility in Jacksonville several years earlier.

Depending on the outcome of the previous cystogram, Dr. Caso would make a judgement call whether or not to remove my suprapubic catheter. I was happy to share the above story about the radiologist with him, assuming he had already read the report.

As it turns out, he never got a copy, because technically the ordering physician was Dr. Cusnir at Mount Sinai, and no copy had been forwarded to Dr. Caso's office. "Did he say everything was fine?" he asked, with an exciting anticipation in his voice. He was hoping as much for a good outcome of this scenario as Julia and I were.

"I have a copy of his report right here", I said and produced several pieces of paper from my bag. One was the report of the cystogram, the other was from recent kidney ultrasound procedure.

Together with his nurse practitioner Ilyssa, he speed read both reports, focusing in particular on the final section, in which the radiologist summarises his findings. "YES!" he said excitedly, "That's exactly what we wanted". We were all thrilled to have the confirmation we were hoping for: my bladder had healed, and in other news, my hydroureter condition had disappeared, probably because adequate urine flow had been restored.

"While we're dealing with reports", he said, "I don't know if you have a copy if it already or not, but here's what we got back from the pathologist." We had briefly spoken about those when I was still in hospital. During the surgery, a pathologist had taken a quick look to make sure no cancer was left in me, but to be triple sure, some samples were sent back to the lab for in-depth analysis.

He showed me the report and highlighted the important parts. "Here you go - benign, benign, benign... and benign. Every sample we sent over came back negative."

As you'd say on Twitter: #result

* * * * *

With the formalities out of the way, it was time to take out my catheter. After the initial tickling issues, it had been working fine. I did notice a slightly weird flesh growth around the part of my abdomen through which it came out though. It looked like a huge ring shaped wart.

Dr. Caso called it proud flesh, and he told me that it wasn't anything to worry about. He could take care of it with something that reminded me of very large match stick, one that would create a flare at the tip but not burn with a flame. Some acid was involved, and my skin turning grey, but I didn't feel any pain.

Sadly I forgot the medical name for these very entertaining sticks.

Removing the catheter itself was as easy as it had been with all my other ones. Deflate the internal balloon, take a deep breath and pull. The sensation of it leaving my body was weird, and my next question naturally was how these two holes would heal and when that was likely to occur. One hole was in my bladder, the other had been poked through the rest of my abdominal tissue.

"It's hard to say", Dr. Caso admitted, "it could take five minutes, or it could take a week but we don't need to do anything, your body will take care of all by itself".

* * * * *

It amazes me what the human body can put up with, without throwing bigger tantrums sometimes. I kept thinking about this on my way home from Baptist Hospital, via a handy Lyft ride. I was also preparing myself for the inevitable moment at which I'd have to start urinating with a previously cut-in-half and then re-assembled bladder. That moment came not long after I had arrived at home.

It worked flawlessly!

Or so I thought at first.

On subsequent urinations, I couldn't help but notice some urine escaping through the hole that had not so long ago played host to that catheter. Every time I went to the bathroom, most of my urine output went though my penis, but somewhere between ten and twenty percent leaked through that suprapubic hole.

I guess it took a little longer than five minutes to heal in my case. When the condition had not improved after nearly a week, I was getting worried. Especially during the night, I felt that this hole was leaking urine, and I couldn't see a way to make this stop. I feared that the more the hole is flushed, the less of a chance the tissue has to heal itself.

Julia had a great idea to combat the wet patches I was experiencing: take a sanitary towel, usually not found in men's underpants, and place it opposite the suprapubic hole. Affix it to the inside front of your pants and let the super absorbent towel do its thing.

It worked brilliantly, thanks again to "outside the box" thinking and team effort. It goes to show that there's always a solution if you put your mind to the challenge.

* * * * *

It took a little longer than expected, but eventually, in just over a week, the hole was tight. It still looked a little gross, like a mini-version of my ileal stoma, but over time it changed colour and went as pale as the rest of my skin. Today I can still see where it once was, but nothing more than a hint of scar tissue is visible.

The Ostomy Section

Now that we know each other a little better, let's talk shit. Quite literally. I've been talking a lot about my colostomy and my ileostomy without going into detail. I thought I'd combine both of these diversions into a single chapter and this is it.

There's never a good time to talk about this rather awkward subject, so if you have an issue with bodily functions, brace yourself. We'll be discussing these in-depth now.

* * * * *

Let's begin by examining what we know about the "healthy" human digestive system, that is to say one that hasn't been chopped in half. Sadly I didn't pay much attention when this subject was discussed at school, so I had to research this on my own little bit.

It all begins in the mouth, in which we break our food down into swallowable pieces. Perhaps you could argue that digestion even begins one step earlier, on the plate or in the kitchen, but let's stick to the human body instead.

In our month, saliva is excreted to process food. In fact, saliva has an interesting dual function: it makes it easier for us to swallow food, but it also starts breaking down starch and certain fats as we start chewing or even smelling food. Starch in particular is turned into sugar, which is why when you start chewing potato chips for a long while, they start tasting sweet. Humans produce roughly two pints (or one litre) of saliva every day.

What we swallow is known as bolus and travels through the oesophagus all the way to the stomach for further digestion. The oesophagus is a rare triple-function device in the human body: we can use it for breathing, speaking and swallowing. Don't try it all at once though.

The stomach's main function is to churn our food around and mix it with gastric acids so that nutrients can be absorbed a little later. Contrary to popular belief, not a lot of absorption happens in the stomach itself; most of this vital job is happening in the small intestine, to which it is connected. A small amount of substances can be absorbed by the stomach, for example water, caffeine, some vitamins and medication like Aspirin.

The inner lining of the stomach and the small intestine that follows it is quite a miracle of engineering. Because of strong acidic juices that can dissolve meat, it means although such juices are excreted, they usually do not harm the stomach lining itself. That's not an easy feat to achieve, especially given that it was not "designed" as such, but probably just "happened" by accident during human evolution.

One fascinating aspect of the stomach is that it can relay information about nutritional contents to the brain. If this system works, the stomach can signal if enough food has been ingested, independently of our tongue and our eyes, in addition to the feeling that we get when it expands.

Mixing food together for further processing happens when the stomach folds over itself, contracting and expanding, until the mixture now known as chyme can be released into the next step of digestion, namely the small intestine. The whole process can take anywhere between 40 minutes and several hours.

The transfer of chyme from the stomach into the small intestine happens when a valve at the bottom of the stomach opens up. It's called the pylorus, the Greek word for "gatekeeper". Chyme is then enriched with bile and pancreatic juice so that nutrients can be absorbed through the surface of the small intestine, using many of its small protrusions called the villi.

The size of the small intestine in humans is quite impressive: it depends on how tall a person is, but on average, the length of this thing is anywhere between 10 and 16 feet (which is 3 to 5 meters). If we were to spread out its internal surface area, the stats get even more impressive. The total is 100 square feet (or 30 square meters).

Yowser! I've lived in rooms smaller than that!

This thing is incredibly important for us to get adequate nutrition, and it's responsible for digesting most of our proteins, lipids (fats) and carbohydrates. The small intestine is one of the most complex organs in the human body, probably only surpassed by the brain. It also means that a lot of our health is riding on this fragile mechanism, which appears to be randomly "chucked in" to the meat sack we call an abdomen. It reminds me of how some people pack suitcases without folding their clothes first.

Fun Fact: In traditional Chinese medicine, the small intestine is regarded as a "yang" organ (as in positive, active, masculine, open, belonging to this world, south side of the hill, north bank of the river kind of thing).

When the small intestine is done with its job, the chyme is transferred to what's known as the large intestine, also called the large bowel or simply colon. Something called the caecum sits at the intersection between the two, a pouch-like organ to which the ever so troublesome appendix is attached.

Transportation in both small and large intestines happens when sections contract and expand, a motion known as bowel movements, or more medically speaking, peristalsis. Nurses with a stethoscope often listen to the sound of these movements to assess if the digestive processes are working as they should.

The colon's main job is to extract water and salts from the chyme. The average length of the human colon is about 5 feet (or 160 cm). This is where farts are created due to flora-aided fermentation of material that cannot be digested.

Once the colon is done processing chyme, it becomes feces, more commonly known as shit. Fecal bits are dropped into the rectum, which is connected to the end of the colon and plays a similar role as the urinary bladder: it acts as a collection device for fecal matter. When it's full, we feel the urge to go to the bathroom to take a dump. In medical terms this process is called defecation and involves releasing a ring muscle called the anus while simultaneously applying careful pressure to the abdomen, followed by a good deal of wiping.

That, in a nutshell and in very simplistic terms, is how we digest food.

* * * * *

Ever since the seventies, some fascinating research into the whole GI tract has been done, which revealed something remarkable: Most of its functions are operating independently from the brain, our central nervous system, which is in control of pretty much everything else in our bodies. The GI tract appears to have its own version of it called the "enteric nervous system", a network of neurons much like those that are present in the brain. It is therefore sometimes referred to as "our second brain". The two can communicate, albeit mostly one way, namely from the gut into the upstairs brain.

The amount of neurons in the GI tract is much smaller than those found in the "first brain", but an astonishingly five times higher than those found in our spinal cord. The enteric nervous system also makes use of many neurotransmitters, and over 90% of the body's measurable serotonin lies in our guts, together with 50% of measurable dopamine.

So when we refer to "gut feelings", the description is very appropriate. It is currently under investigation how a healthy gut flora can benefit our emotional wellbeing, but it is fairly safe to say that there is a far greater connection between the two than currently meets the eye.

* * * * *

As with other parts of our body, there's a lot that can go wrong with this intricate setup. Eat some fruit and wash it down with plenty of water and you'll find you may get diarrhoea. What's happening there is that some bacteria that might be ingested with your fruit are not appropriately neutralised, because the agents that would do so are too watered down. As a result, there's a bacterial imbalance somewhere in the GI tract, which will make the body eject the substance prematurely.

Too much water and fruit is only one example that may lead to diarrhoea. Some medications can do the same thing accidentally, in which case it's called a side effect. Other substances can bring on rapid bowel movements, leading to a completely cleaned out GI tract, in which case it's called the desired effect.

Something similar to diarrhoea can happen when food hasn't been transferred to the small intestine yet. If it's still in the stomach, premature release of food is called regurgitation, more commonly known as throwing up. This is caused by contraction of the muscles around the abdomen. When this happens involuntarily, the body senses that something isn't right with what has been ingested, or it realises that it cannot currently deal with food.

Some people can do this voluntarily and deliberately, like this guy we had as a guest on an MTV show once. He could throw up on command by inducing the required muscle contractions for this feat. Believe it or not, but these people are called "professional regurgitators", often ingesting unusual objects that can be brought back from the depth of their GI tract. I cannot adequately begin to describe how un-funny that performance was.

* * * * *

We had a teacher at school named Mr. Malz, who was telling us that the whole GI tract is actually classed as "outside world". What he meant was although the whole thing is inside of us, and folded in on itself countless times, it is technically a hollow pipe. That's an interesting thought.

Mr. Malz was one of the few teachers I did like when I was at school. This man could really think outside the box, which is probably why he brought the above fact to our attention. We were all adequately puzzled when we heard that he had one day disappeared from our school, because he was on trial for poisoning his wife. I wonder what happened to him.

* * * * *

Now that we know a little bit about the human digestive system, let's see where a colostomy comes into play. When skilled colon surgeons like Dr. Szomstein have to remove a part of the intestine, be that the large or small intestine, they have to make a connection between the two pieces. It's like adding two pieces of a garden hose together, and the principle is very similar.

With a garden hose, you'd probably buy an adaptor that consists of two rings that slide over the two hoses, and one connection bit to which the two rings are screwed, forming a connection. That's how they do it with colon material too. This procedure is called a surgical anastomosis, restoring continuity to the otherwise hollow pipe. From what I understand, a stapling device is used to make sure the two rather squidgy bits of material can be attached together and held in place. There are several YouTube videos demonstrating how surgeons do it.

Dr. Szomstein explained to me that such a connection takes about six months to heal, during which time very small titanium staples hold the two pieces together. Tissue then grows around them, without the staples having to be removed. I was curious to find out if these metal pieces would show up on an airport scanner. He says they do not, but I haven't put his theory to the test since my last surgery.

* * * * *

Ostomies are used when part of the intestine needs some rest so that it can heal properly. They're not always necessary, but sometimes it's best to put them in place to make sure a connection such as described above does not leak stool into the abdominal cavity. If this were to happen, a rather harsh infection and potentially deadly sepsis would set in.

In fact, something like that almost happened to my friend Sven in Berlin. He had a colon procedure done, in which one part of his intestinal tract had to be removed. The doctors didn't feel it necessary to put an ostomy in place, made the internal connection and stapled him up again. He recovered for a few days in hospital and started eating again. Everything seemed fine.

On the day of his discharge, the doctors performed one final blood test. Sven was already sitting there in his street clothes, ready to drive home, when a couple of nurses came rushing in to tell him they'd have to prepare him for an immediate emergency surgery.

Sven couldn't believe it, but as it turned out, his latest blood work had shown signs of an acute infection. This was an indication that the connection was not as tight as the surgeons had thought it would be. I believe the words "extreme STAT" were uttered that day.

The worst could be avoided, and Sven never had an infection or potentially deadly sepsis as a result of the doctor's quick thinking, but emergency procedures are never as "gentle" as planned operations. He ended up with the same treatment that I had, starting with a surprise colostomy. Several months later this was reversed, at which point the doctors gave him an ileostomy. Two months after that, they connected his colon and the ileostomy was removed for good.

He now lives a happy life in Berlin, playing the trombone.

* * * * *

So why are two types of ostomy necessary when only a single part of the intestinal tract is taken out? Very good question, I was wondering about this myself, since I had precisely that scenario happen during the course of my treatment.

When Dr. Szomstein took out my original 20 cm tumour and my entire sigmoid colon in February 2016, I woke up with a surprise colostomy. That's a procedure whereby my colon was separated from my rectum and sutured to a hole on the left hand side of my belly. The rectum and the remaining part of the colon were closed off, so that Dr. Szomstein could re-attach it later. Depending on the reason and the extent of such a procedure, it can be done laparoscopically or fully open. I had the latter variation.

Dr. Szomstein did this because connections in the large intestine (further down the GI tract) heal slower than those in the small intestine (further up). He wanted to make sure the connection he had made could heal for several months without being affected by the passage of food.

Later on in October 2017, which was much later than we had originally planned, he reversed the colostomy and re-attached my colon to the rectum, closing up the hole on the left hand side of my belly. Because that too was a connection in the colon, and therefore also prone to healing rather slowly, he separated my small intestine from the colon and gave me an ileostomy instead. That's the output of the small intestine, which is sutured to a hole on the right hand side of my belly.

Two months after that, just before Christmas in December 2017 and similar to Sven's experience, he reversed the ileostomy and closed me up completely. Dr. Szomstein could do that because this connection was going to heal faster and without the risk of me getting an infection.

* * * * *

Those are the technical bits of both types of ostomy in a nutshell. Let me tell you next how to deal with either of these conditions. That's a mixture of technical know-how, product knowledge and practice, not to mention the emotional side that any ostomy brings with it.

There's a lot of stigma attached to these artificial exits, probably because there's just not enough knowledge around to understand what these things are and how they work. I remember my granddad's brother had an ostomy in the early eighties, and it was always regarded as a bit of a "disgusting mystery".

With today's tools, ostomies aren't that big a deal anymore. I wonder if they ever really were. Fact is, there's not enough general knowledge floating around about ostomies. We don't discuss these things over coffee or at the dinner table, and you never think about the gory details until you're confronted with one yourself.

All you can think about is how something will never be the same as it has been for decades. How would this thing work? How embarrassing would it be? Will my diet change? How will it feel? Will other people notice? Would it stink up the joint? Will I have to live in isolation for the rest of my days?

I had all these questions, and I felt terrible about having to live with an ostomy at first but it became normality within a matter of days. I was surprised how quick I got used to it, and how quickly I picked up the technical details.

There was a big difference between the colostomy and the ileostomy though, and I'll go into the details below. Let's start talking about the easier and more convenient ostomy first, the colostomy.

* * * * *

When the colon is done processing our food, or more accurately the chyme that comes in from the small intestine, it ejects small bits of feces and drops them into the rectum. When that's disconnected, those bits end up popping out of your stoma. When I say "popping", I mean that quite literally, depending on how hard that stool is.

To make sure all that stuff can be collected in a sensible manner, something called an ostomy appliance is attached to your belly. Several manufacturers make these supplies, and they generally come in two variations: one piece and two piece setups.

I've only ever used the latter, the two piece systems, specifically the ConvaTec series. They consist of something called a wafer and a flat plastic bag, both of which attach to each other with a similar setup you know and love from the likes of Tupperware boxes. Think of it as the lid clicking into place when you close the box. It's that kind of system.

I have no idea which genius came up with the "wafer" terminology, because what this refers to has nothing whatsoever to do with wafers. I was under the impression a wafer is what you stick into your banana-split ice cream, but that's not the case in ostomy terms.

My wafers were called "SUR-FIT Natura Two-Piece Durahesive Skin Barrier". What a mouth full. They weren't crispy either.

In the ostomy world, a wafer is a square bit of plastic with a peel-off self-adhesive sticker on one side, on the inside of which is a round circle with a raised plastic rim, about 2mm in height (that's on the non-sticky side obviously). In the centre of this thing is a hole the size of your stoma, made from a soft rubber-like material known as a hydrocolloid collar. The whole square sticks to your belly so that only the stoma is exposed, covering the rest of your skin for protection against bacteria and acids.

The stoma is technically the opening into the body, but in ostomy terms, it refers to the visible end bit of the colon or small intestine. It looks and feels like the inside of your mouth, and is moist and red. The stoma can change its colour and size, it can even prolapse at times. That's something you don't get to see every day. I had a feeling mine was sticking out its tongue from time to time, usually when my belt was too tight. It's nothing to worry about if it happens occasionally.

Weirdly enough, there are no nerve endings in the stoma, or in fact anywhere in the intestinal tract. You can poke your stoma with a fork (not that you should do that), and you'll see it reacting by contracting or expanding, but you can't feel anything. It reminded me of a snail, moving very slowly, albeit with a very different colour and temperature.

With this wafer in place, the plastic bag attaches to the rim on the top so that it forms a closed system. The bag can hold just over a pint of stuff and narrows towards the bottom, leaving about two inches of an opening so that it can be emptied (about 5cm). A plastic clip closes the bag, similar to those gadgets in the supermarket to keep a bag of potato chips "fresher for longer".

The wafer can stay in place for several days without needing to be changed, depending on how long the sticky stuff stays securely on your skin, which in turn depends on how well it was affixed to begin with. I used to remove mine before a good shower, allowing me to thoroughly clean the skin underneath it and remove all previous glue residue.

Any adhesive lasts best when it's applied to bone dry skin, so I used to lie on my back for a quarter of an hour after the shower to make sure the affected area dried well. The wafers are individually wrapped, and the packet can be used as a good fan that aides in the drying process. I've also heard good things about hair driers that can help with this task.

Once the skin is as dry as it can be, I used a small pad similar to an alcohol swab that was called "No-Sting Skin Prep", made by a British company called Smith and Nephew. This stuff makes the wafer adhesive bond better to the skin.

The same company make great adhesive remover pads too, which come in handy when it's time to peel that wafer off again. Those are called "Uni-Solve". They're fantastic to remove anything that's stuck to your body, including bandages and StatLock devices.

ConvaTec's own AllKare brand also make these two types of wipes, but as much as it pains me to say this, they suck. Badly. I had to use about 6 AllKare wipes to remove a used wafer, something that can be achieved with a single Smith and Nephew Uni-Solve pad. Remember: Smith and Nephew = good. ConvaTec = good. AllKare = bad.

* * * * *

The above procedure works after a bit of practice, but of course only if the stoma does not eject any output while you're changing the setup. That's less of an issue with a colostomy, because what comes out does so rather slowly, giving you a chance to react to it. It's like picking up your dog's droppings when you take him for a walk.

Colostomies also have natural rest periods, during which no output is produced, making it easy to change the wafer and the bag. But with an ileostomy, that's a different ballgame altogether.

An ileostomy leaks a much more acidic and harsher liquid pretty much all the time, with only a few moments of rest in between. This means the wafer doesn't last as long, because liquid and acidic juices disintegrate it faster, while also dissolving the glue that attaches it to your skin.

My ileostomy frequently drove me to the brink of a nervous breakdown. I remember that one day when I had to change my wafer four times in a twenty-four hour period because the thing would not shut up or give me a chance to adequately dry the skin.

Not only is it inconvenient when you find wet patches under your t-shirt because you're permanently leaking LiquiShite(TM); it's also painful and inflames the skin that you need to attach those things to properly. It's terrible when your peristomal skin is so red, raw and irritated that it desperately requires some aloe vera and a rest, and the last thing it needs is another self-adhesive glue party, but you have to slap a wafer on anyway to make sure all the acidic crap can be contained.

The only thing you can do in those situations is to stop ingesting either food or liquid for a few days until the skin has had a chance to calm down. It will happen, even with a wafer attached, thanks to the breathable hydrocolloid material, but it will take a couple of days, depending on the extent of the damage.

Dealing with an ileostomy can be very challenging at times. It's important to remain very calm and relaxed, and not to get hung up about this being terrible, or it having to be done in a hurry.

Several skin friendly products are available to make cleaning the surrounding skin easy, such as SensiCare by ConvaTec, and of course moist flushable toilet paper.

I also liked having a bottle of saline solution standing by, an ample supply of toilet paper and some large alcohol wipes (the good ones made by PDI, not the rubbish ones made by Coviden). It helps to have a disposable bag at your side to dispose of anything from packaging material to disintegrated wafers and bags.

* * * * *

Ostomy output can vary greatly, depending on what you eat and what you drink. A colostomy is relatively easy to manage. Most of its output is solid and often covered with a saliva like mucus which aids transportation in your colon as well as in the colostomy bag. It makes a big difference when those droppings can work together with gravity, clearing the path for more follow-up material.

When your output turns into a softer paste-like substance, it's a little trickier to manage. You must make sure to manoeuvre pasty stuff to the bottom of the bag manually, causing a bit of a mess inside the bag. That's called "pancaking", probably because it feels like the stuck pancake batter to a cast iron skillet, one without the good T-Fal non-stick stuff on the inside (this is not a typo by the way: the brand is called "T-Fal" in the US, while they spell it out as "Tefal" in Europe).

It's not a big problem if you keep on top of pasty output. One of the tricky bits about an ostomy is that you don't feel when things come out. As many neurons as our intestinal tract has, it is not equipped with nerve endings. How that explains abdominal cramps is anyone's guess. Maybe I should ask Dr. Szomstein next time I see him.

Due to the lack of nerve endings, it's difficult to tell when the colon decides to move things out of the stoma. That's why you see ostomates constantly checking how full their bags are, because it's the only way for us to tell how much is in there. Ostomates by the way are those who have any type of ostomy, be that a colostomy, an ileostomy or a urostomy.

Bags being too full or poop not moving down properly can have dire consequences. Sometimes the bag can fill up quite quickly, so much so that there's not even time to move stuff around fast enough. When either scenario happens, the pressure can be so strong that the wafer is literally pushed away from the body. Those bowel movements are more powerful than we give them credit for.

* * * * *

While the wafers don't change, except in diameter to accommodate various sizes of stomas, the bags come in different variations. There are regular bags, designed to hold solid and pasty stools, with a 2 inch (5 cm) opening at the bottom. Those work well for colostomies, but emptying them can get messy when you have watery or loose output, as is common with an ileostomy. The issue is that everything is released instantly, causing splashback and unavoidable accidents.

There are exceptions of course, causing liquid output even with a colostomy. During my TPN days for example, I didn't eat solid food, so all my output was watery even though I had a colostomy. While I was still eating, during the chemo infusions, I had occasional bouts of diarrhoea, for which the above bags were also not a great choice. You can still use them, but emptying requires skill and patience.

Thankfully there are other bags that have a kind of flip-up valve at the bottom, designed for such eventualities. They hold more liquid and are easier to empty when output is loose. I preferred those bags, both during my TPN days as well as when I had my ileostomy. ConvaTec calls them "high output bags". Because it's difficult to predict what your output may look like, these bags had the added benefit that they were designed for the bottom part to be cut off, thereby turning them into one of the regular bags with a clip.

If you're annoyed by liquid output, fear not, a solution is at hand. You can get little sachets of powder that live in your ostomy pouch, binding liquid to make it more solid. It's ideal for ileostomy output, but from what I understand it's not a solution fur urostomies.

ConvaTec calls these little gadgets "Diamonds". I have no idea how this chemical magic works, but I have a suspicion it's similar to how you thicken up chicken broth when you turn it into a sauce. Ask your ostomy supply company for samples. They've sent me some, but I never felt the need to use them. I was quite happy living that liquid output life.

* * * * *

All these types of bags are a true marvel of engineering. First there's the back side. You'd think that if you have to wear a piece of large plastic against your skin for days on end, the skin underneath the bag would become sweaty. That's not the case. They're designed with a gauze type material on the back, which enables the skin to breathe, causing little to no sweating.

Then there are those bags with a charcoal filter in it. As you can imagine with a colostomy, farts are now collected into a plastic bag too. This means the thing can blow up quite unexpectedly, and when that happens, it makes for very funny noises. It can be quite hilarious. When I say "blow up" I mean "fill with air" rather than explode. Still, that air needs to be released somewhere, otherwise there's no room for either more farts or droppings, and when the bag overfills, well that's just disastrous.

So to combat this air overflow scenario, some bags come with built-in little holes and air filters. They're designed to let air out without stinking up the joint. Essentially, your flatulence is filtered from now on, making your farts smell like roses. Almost. Actually they hardly make a difference.

These filters come with a small piece of adhesive tape so that should you wear the bag under the shower (which I do not recommend by the way), you could cover it so that liquid cannot enter from the outside.

One last bit about bags: they come in a choice of transparent and "skin colour", an opaque slightly tanned look so that they're less noticeable in front of the mirror. It's not meant to be a fashion statement though. I believe it's designed to give the wearer a choice to see what's coming out of the ostomy or not. This can be important for medical reasons, and to check if your stoma is working. After a while, and once you're sure everything is working fine, you may get tired of looking and use opaque bags.

I used a mixture, and for me the grass was always greener on the other side; when I was using clear bags, I sometimes wished that I could unsee some of the output. But when I was using opaque bags, I often wished they would be clear so I could quickly check if my stoma was OK. It's a tricky one.

* * * * *

I didn't really know what to think of this whole colostomy contraption at first, but I very quickly began getting used to it. To my own surprise this happened within a matter of days. I had expected to never get used to the stoma or the bags. I woke up with mine as a "surprise present" after the surgery, so it wasn't clear before the procedure that I as going to get one. But with the extent of the first surgery, this was unavoidable.

Right after surgery, the whole site around my stoma was still enlarged and swollen, but there was no wound or infected tissue there, despite it being whipped into use only a few days after the procedure. I remember the first time I had something to eat in hospital. Although the kitchen was already closed, Julia got them to make me the cutest ham and cheese sandwich after hours, on the grounds that it was a "food emergency".

I knew that sandwich was going to come out one way or the other. Although I was hungry, I was very ambivalent about starting to use my GI tract again. It had several bits chopped out and stapled back together, and then there was this peculiar diversion too. I was paranoid that ingesting food would cause serious trouble. But that was not the case. My stoma was happy from day one, thanks to the skillful fingers of Dr. Szomstein and the team of surgeons that sutured me up again afterwards.

As I recovered from the surgery, over the following weeks and months my stoma started to shrink a bit. This had to do with the swelling from the previous nip/tuck job gradually going down. I had several ostomy nurses to guide me though the early days of living with a stoma, one in hospital, and another one who came to visit us a couple of times after I was discharged.

When the stoma reduces in size, it may be necessary to adjust the size of the ostomy supplies. If the wafer and the collar around the stoma is too large, healthy skin is exposed. If it's too small, the stoma might accidentally be covered, releasing output underneath the wafer, sowing the seeds for messy disasters.

Smaller stomas mean smaller wafers, which means less of your skin is covered by self-adhesive glue. This in turn means it's just a lot more comfortable to wear, giving you more room to manoeuvre. Which is always nice.

* * * * *

Speaking of surgery: the surgeons in the operating theatre do not necessarily use the same supplies that you will use on your own when you're at home. They use rather hefty brown blocks of plasticine to stabilise the wound. Ideally, a few days after the surgery, an ostomy nurse should change them and replace them with regular supplies for you.

I remember this hadn't quite happened in my case, or it didn't happen as quickly as Dr. Szomstein had planned it. When he noticed this oversight, it was one of the rare moments I saw him lose his temper. He immediately arranged for my setup to be changed over to regular ostomy supplies, which was a great relief to me (although it was slightly hairy to peel that block of brown plasticine off my sutured-up belly).

I think the nurse must have been in such a hurry that I accidentally ended up with a urostomy bag instead of a colostomy bag. When solids started coming out, the tiny tap at the bottom clogged up all the time, understandably so, since it was only designed to cope with urine. What fun we had emptying that bag!

So if you're fresh out of surgery, do not despair: that stoma won't always be as big as it appears right now. Give it a few months and its size will reduce.

* * * * *

The next challenge as a fresh ostomate is what happens when you're bold enough to go for that first trip to the supermarket. To wear that colostomy in public and take it for a walk. That took courage and presented additional challenges I hadn't thought of before.

How would I wear trousers, above or below the stoma? Above means you look like an idiot, like those people who have their pants sitting just below the chest, but the benefit is that the whole colostomy thing is covered and inside your pants.

Or, do you wear trousers below the stoma, therefore looking like the hipsters who haven't yet learnt how to pull their pants up, presenting us with more of their underwear than we had ever asked to see. While giving you good street cred in the hood, there may be a technical issue with stoma output getting caught above the waist line due to tight belts.

Or perhaps the third option was best, namely to wear trousers at the same height as before, which would mean the waist line rides directly on the stoma, potentially irritating it and preventing output altogether.

It's a tough choice. I've tried all three options and have found that the best thing for me to wear were pants with an elastic waist band, riding underneath the stoma. The best most comfortable ones were sweat pants and cycling shorts. Those stay up, without putting additional strain on either the stoma or the surrounding areas. I've tried jeans too, and of course they work to a certain extent, but for longer periods they're not comfortable or functional enough to wear.

Living in the subtropical climes of South Florida, my favourites are ZOIC cycling shorts. I wear them almost every day. They're a tad pricey, but they have a superb dual-function role in my life. Not only do they work great with any type of ostomy, they're also very good exercise shorts. They're made from a combination of polyester and spandex, have room for an internal padded liner for longer rides, they dry quickly and I never get the feeling that I sweat in them.

* * * * *

Most of the technical aspects I've described here are true for both colostomies and ileostomies. But when it comes to diet, the two do not share many similarities.

With the colostomy, my diet didn't change much. I could eat just as I had done up until that point, with a single exception: I was to avoid food that contained sharp undigestible fibre, such as popcorn. The sharp corners would potentially slice right through the stoma. While that wound't have been painful due to the no-nerve-endings phenomenon, open wounds can lead to infection, an inconvenience we would all like to avoid as much as we can. Other than that, everything stayed as it once had been. This included ample water intake, most of which would be filtered out in the colon and returned into my blood stream, for eventual filtration by the kidneys.

That's the biggest difference between the colostomy and the ileostomy. Because the latter is diverted before chyme can reach the colon, much of the water our food contains is excreted by the ileostomy. Water as well as salts are not returned to the body, so it cannot be put to further use. As a result, an ileostomy messes with your diet a great deal more.

It's inconvenient, because that bag keeps filling up with liquid all the time. It also leads to the wafer coming loose a lot quicker than with a colostomy, requiring more frequent changes.

More importantly though, much of your water intake never reaches the blood stream. No matter how much I drank, I constantly felt dehydrated. My meticulous 100 oz per day intake was no longer enough (that's just over 3 litres). Besides, I lost a lot of salt and electrolytes in the process. Sodium and potassium are important elements for our bodies. They allow us to maintain an adequate amount of liquid in our system. Without them, we cannot hold on to enough water.

Dehydration goes way beyond just feeling a little thirsty. I had this craving for salt everywhere I went during the ileostomy days. Anything and everything needed huge amounts of salt on it. Eventually I had a few sachets in my shorts so I could lick it off my hand, making me feel like a deer in the woods, licking a huge block of salt that the ranger had provided.

It didn't matter how much of it I ate, my body couldn't hold on to it and flushed it out through the ileostomy. It got so bad that I had the onset of serious muscle issues, especially overnight. I often woke up when a cramp in my calf muscles was about to set in. Most times I could avoid it, but sometimes that wasn't possible.

Our concern at the time was that dehydration wasn't helping my ever worsening kidneys either. Armando suggested I use 500-1000 ml of normal saline solution and ingest it intravenously, therefore bypassing the ileostomy and flushing out the kidneys.

We discussed this with Karen and Dr. Cusnir, and both were happy for the experiment to proceed. Thankfully I had my constantly accessed subcutaneous port, and I had experience in infusing my own antibiotics at home. It was therefore easy for me to administer the hydration myself every other day, without having to involve a nurse or spend time at the hospital infusion suite.

For intravenous hydration to work effectively, it needs to be administered nice and slow. Overflowing the system would not allow the body to absorb the liquid and put it to good use. A one litre bag of saline solution had to be infused over for the course of four hours. This was not a mobile solution so I could not go out and walk around during this time, unlike with my TPN.

But it was worth it. My wellbeing increased tremendously while I was on hydration, and the muscle cramps went away very quickly. It was noticeable that when I stopped the hydration, those cramps gradually came back. In the end we settled for one bag of hydration every other day to keep my systems at optimal levels.

* * * * *

I have only lived with an ileostomy for 10 weeks, from October to December 2017. Truth be told, I couldn't wait for Dr. Szomstein to get rid of it. I had no problem living with a colostomy, but I genuinely disliked that ileostomy with all the trouble it was causing.

I remember having to make a conscious effort to not let this thing annoy me. I regularly flew into a rage about all the issues it was causing and hated the detrimental effect it had on my wellbeing. I kept thinking, "I've just survived cancer, it was a bloody miracle, I've beaten the greatest enemy there is - and now this tiny thing is peeing in my cornflakes, preventing me to close the book on all this."

As with many of the obstacles on this journey, I managed to see this as a test, one that would ascertain if I could take a little bit of extra pressure. To verify if this final hurdle after so many rounds in the ring would throw me. It nearly did, had I not consciously intervened and put this minor annoyance into perspective.

Having said that, it was not impossible to live with the ileostomy. Had I had more time, I have no doubt that eventually I would have found a way to live with it and I'm sure we would have become friends.

* * * * *

I nearly forgot to share a tip on how to deal with that peristomal hernia I keep mentioning every now and again. It's something I was doing so regularly and so intuitively that it almost slipped my mind.

There are specialised support belts available that I highly recommend. Not everybody with a stoma will get a hernia, but from what I read when I researched this topic, about 50% of all patients will get some kind of bulge or other. Some will get a less pronounced effect, while others may develop serious issues digesting food.

Even people without a stoma sometimes choose to wear similar support belts. You may have seen construction workers wear these tight black outfits that go around the waist. Those are to prevent accidental hernias that can happen when the abdominal muscles develop an unintentional weakness, through which parts of the small intestinal tract may escape. Heavy lifting can bring this on. From what I hear, it's extremely painful.

When too much of the small bowel pushes through a hernia, the GI tract may be kinked so much that food cannot be processed, leading to abdominal pain (both from the GI tract and from the hernia itself). It ain't pretty.

A peristomal hernia on the other hand is a little different. The surgeon creates a deliberate opening in the abdominal muscle, which means that there is no pain involved when it's split. The same principle of internal body pressure applies though, which can lead to small bowel loops escaping, creating a hernia.

There's usually no pain involved, as long as nothing gets trapped inside that hernia. Think of it as a garden hose that's bent. Water will still flow through it up to a point, but as soon as you bend it close to 180 degrees, the flow stops. Slip a ring onto the bent hose, and you can imagine the effect.

I've noticed the beginnings of my hernia very early on, without knowing what this feeling was about. During some of my early walks, when I was fit enough to walk around after the first surgery, I had a weird sensation of something pulling my colostomy bag down. My first thought was that perhaps my pants were too tight, and that they were perhaps accidentally dragging the whole setup down.

I had a similar feeling when I started to walk faster or made the mistake of running over a traffic light that was about to turn red. Yikes! It wasn't painful, but it felt as if a large pole was inserted into my abdomen, which was wobbling around like a lever while I was running.

I never made that mistake again!

The way to avoid such trouble, and perhaps even avoid a hernia altogether is to get a specialised ostomy support belt. They work for colostomies, ileostomies and urostomies alike, much like one of those slimming girdles. Ostomy support belts form a tight grip around the affected area, leaving a convenient hole for the stoma and the bag.

I know of two types, but there may well be others. One is made by a company called NuHope. They have a wide range of ostomy supplies, support belts being one of them. From what I understand, they're made of a velcro type strap material. Before you can order one from NuHope, you have to give them all kinds of measurements about your body, including the size of your potential hernia.

Although I considered this product, I wasn't in the mood to spend an hour measuring my body and my stoma. There were too many questions on the site, including details about what my hernia was like after I was lying down for 15 minutes, compared to when I was standing up.

Slightly annoyed by the Twenty Questions game, I moved on and have never tried the NuHope belts.

The one that spoke to me was made by a company called Phoenix Ostomy, based in Arlington, WA. These belts are designed by a long time ostomate who was dissatisfied with other products he tried. He decided to design his own and share it with others in the same situation. Kudos for that!

They only do a single product, and all you need to measure is the circumference of your waist, pick the right size and click "buy now". Your health insurance may even be able to reimburse you for the cost, which doesn't break the bank to begin with, so I never bothered to claim for my belts.

I never looked at another product because the Phoenix system worked so well for what I needed. It's made of breathable lycra spandex, it's kind of "skin coloured" beige, and it even has an internal pouch into which you can fit the plastic bag. This works better for ileostomies than for colostomies, doing a good job at concealing and stabilising the bag. No more bag dangling - very handy.

Over the course of my adventures, I ordered a total of four belts. Due to the nature of the material, they wear out with prolonged use over time. The models I've tried had three different positions, so they can be made tighter or looser depending on what you need.

Two of the belts I got were fastened with small silver poppers, the other two (more recent models) use small hooks. The principle is the same, but I much preferred the popper variation. The hooks had a tendency of digging into my skin. I've tried to bring this to the company's attention, but sadly have never heard back from them.

Wearing these belts, my hernia was being held tighter onto my abdomen, which meant that it wasn't growing as fast and as large as it potentially could have. I wish I had known about the potential hernia risk earlier and would have started wearing such a belt sooner.

* * * * *

One final tip on the subject of hernias: Avoid lifting. Anything. Everything heavier than ten pounds can potentially aggravate a hernia when your muscle is already split. I didn't follow the advice Dr. Szomstein gave me and thought it would be really helpful to lift heavy shopping bags around.

It wasn't. I turned into Mr. Mega Bulge. It may have happened regardless of what I lifted, I guess I'll never know. Do yourself a favour and indulge feeling like an idiot for a change, by not helping people with their shopping.

You can find a link to the Phoenix support belt on my website, or head over to ostomysupportsystem.com and order one directly from the manufacturer.

* * * * *

I think that's all I can tell you about the whole ostomy subject from the top of my head. What all this boils down to is this: practice makes perfect, bathrooms are your friends, and never leave the house without a spare set of ostomy supplies. You never know when and where you may need them.

If I have one tip for new ostomates then it's this: Don't fight it. Your stoma is your friend, and your colon or small intestine is only doing what it was designed to do. It's not your enemy. It doesn't mean to annoy or embarrass you. Develop a relationship with it, learn to love it and take good care of it.

Although I didn't give mine a name, I referred to it as a "he". I guess it's a European thing. Most languages except for English give objects a gender. So rather than everything with the exception of people and pets being genderless things, they could be male or female depending on which language you describe it in. "The Moon" for instance is female in most languages, but male in German.

I chose for my stoma to be a "he", and treating him like a pet had its merits. I acknowledged his needs and the fact that he had a mind of its own. He even spoke to me on occasion, usually by commenting on a variety of subjects with funny noises like growls and farts. That little fellow was not without humour.

You could even argue that my stoma enabled me to start a very different relationship with the rest of my body. It's a part of me that I'm unlikely to ever see again, God willing. You could say it was a privilege to have met my colon in person.

I'm glad that things are finally back to normal, but I don't mind admitting to you that a small part of me was a little sad to see my stoma go, with all the advantages a colostomy brought with it. Have you ever been out and about in desperate need for a bathroom, only to find that when you finally reach one, your body didn't want to go anymore? While a colostomy presents other challenges, this is not one of them.

* * * * *

Although I made the fascinating observation that my colostomy had become normal so quickly, I can understand why ostomy supply companies make such a big deal out of "live a healthy fulfilled life" with it. Quite frankly, that was the last thing I wanted to hear when mine was new. I saw myself as a freak of nature, with plastic pipes sticking out all over my body. I guess my catheters and decreased wellbeing did the rest to make me feel that way.

But they're right. There's technically nothing you can't do when you have an ostomy. There are small caps you can attach to go swimming for example, something my wife encouraged me to do frequently. It never came to that due to many other factors. I could walk around with it, go cycling long distances, I could sleep and it never got in the way.

It was certainly helpful to know where the nearest bathroom was at all times, just in case an unplanned adhesive failure were to happen - which it thankfully never did.

* * * * *

I'm going to wind this chapter down now, even though I could probably go on for quite a while about many other related matters. People have filled books, blogs and YouTube channels with this subject alone.

The important thing I have taken away from this experience is that an ostomy does not dictate your life. It's a small part of it perhaps, but it doesn't define you.

What makes you "you" is much grander than the technical collection of the physical parts we call "our body". It goes far beyond where which part of our intestinal tract ends and how we deal with it.

As Jan Christiaan Smuts points out in his book from 1926, "The whole is greater than the sum of its parts".

Super Survivor

After I had recovered from the penultimate surgery procedure for a couple of weeks, after I had spoken with Dr. Szomstein and Dr. Caso, and after I had already had the good news that I was cancer free, we had to decide how my treatment was going to proceed. Dr. Cusnir and Karen had been briefed, and the day came on which we met up to discuss what was to happen next.

Karen came in first, while Dr. Cusnir was still with another patient. The mood had changed dramatically. This was the first time I was in a treatment room at Mount Sinai knowing that I was no longer ill. I was far away from being back to normal, but the reason why we had come here in the first place was no longer in the room with us.

My cancer was gone.

The three of us hugged, Julia, Karen and me, and I remember us all being ecstatic about the good news. Deeply yet casually happy, only one step away from jumping up and down for the duration. We sat together as the winners, the victors, the people who did not give up. We had outwitted one of the most devastating enemies I had ever met.

"What does it feel like to be a Super Survivor", Karen asked. I had no idea what that meant, but I certainly liked the title. Super Survivor. That's what I was. That's how I felt. And it felt good!

I remember it felt decidedly different than I had imagined it. There was an old lady with me in the infusion suite one day, many months ago while I was still on chemotherapy. I was going through one of the worst times then, not knowing which treatment was going to work and when. She must have been over eighty and had been getting an infusion in the pod next to me. Julia and I were just about to leave, so the three of us stood up at the same time, and I caught the woman's eye.

She had the broadest smile on her face. She didn't look healthy, and all the signs of malnutrition and cancer treatment were there, but it was obvious that she was overjoyed. "I've beaten it", she said. "I've just had the good news, I no longer have cancer!" she said to us. It made me so happy to hear that, I couldn't help but cry at her joy.

The lady told me that she too had colon cancer, and that she also had been treated by Dr. Cusnir. She was so lucky that she never needed a colostomy bag, and that she was responding to radiation and chemotherapy. I've forgotten her name, but I certainly remember the day and how unbelievably happy she was. I remember saying to Julia that one day, we were going to be in the same situation.

That day was today. I too had finally survived cancer. Just like the old lady, and like the millions of unbelievably happy people who were lucky enough to have found the right treatment, and the right doctors, at the right time. The people who had the right attitude, the ones who did not give up along the way.

The Survivors.

Today I was one of them.

* * * * *

This was not the first time I was called a Survivor. Jerry called me that, in one of our early therapy sessions back in the London, nearly two decades ago. I had more than a handful of interconnected issues that were making my life miserable. I guess you could call it hefty clinical depression. It was so bad that I had several half-hearted yet recurring suicide attempts, and my worry was that one day I would succeed unless I sought professional help.

"You're a Survivor", he said. "You've survived your childhood, you've survived suicide, and you were strong enough to come and see me, because deep down, you don't want to die. Otherwise you would have. But you didn't. You're meant to be here".

I hadn't thought about Jerry's words for many years, not until Karen brought the subject up again in that little treatment room.

* * * * *

Now it turns out I wasn't just a Survivor. I was a Super Survivor. I was curious to find out what this meant, medically speaking, and asked Karen where it came from.

She explained that patients who have beaten cancer are called Survivors. That is to say if they have survived and responded to a combination of the common treatments like surgery, chemotherapy and radiation.

Patients for whom such treatments have failed, people who would have not survived otherwise, those who have been successfully cured with immunotherapy drugs are called Super Survivors.

The term had been coined in 2014 by the Wall Street Journal, in an article by Ron Winslow entitled "How the Promise of Immunotherapy Is Transforming Oncology". In it, Winslow describes how patients in clinical trials with various immunotherapy drugs have shown remarkable recoveries for various types of cancer, for which other treatments have failed or were simply not available.

Super Survivors are a growing number of cancer patients who could successfully be treated. Although an approved treatment, it's not yet working for everybody. What scientists are excited about however is that we Super Survivors are living proof that there is a better way to cure cancer, even and especially the most deadly forms of the disease that common treatment cannot cure.

You can find a link to the article on my website.

* * * * *

So that's what that term meant. I was one of the very few chosen ones to get access to the treatment, but I was also one of the even smaller sub group of patients who have responded to the immunotherapy without any intolerable side effects. Many other patients were not so lucky. Even if they could get access to the treatment, hefty side effects as a result of their now overactive immune system were preventing them from reaping the rewards.

In a weird way, not having "ordinary" colon cancer did me a favour. It meant that my type of colon cancer could be cured with a drug called Keytruda, thanks to that rare K-RAS mutation and the mismatch repair syndrome.

But on top of that, I was extremely lucky that my body had no adverse effects to that treatment. I could have just as well ended up in a situation with the same cancer, and the same treatment, but horrific side effects preventing the application of that treatment.

It made me a unique scientific odd-ball, one of the few who have made history by being among the first Super Survivors. Imagine that!

* * * * *

Doing a quick internet search, you'll see this term being used in a number of other situations, mainly in regards to cancer though. Parents call their infants and small children Super Survivors, if they have survived cancer at a young age, against much bigger odds than grown ups. The term also refers to those how have beaten rare types of cancer, for which there is limited conventional treatment available.

Authors David Feldman and Lee Daniel Kravetz also refer to people as Super Survivors. In their book by the same title, they're describing those who have been through a traumatic event, who have not only rebuild their lives, but now thrive and grow in ways never previously imagined.

Then of course there's the opening theme for the video game Dragon Ball Z by Japanese singer Hironobu Kageyama, which is also called Super Survivor. The track was released in 2008 and is perhaps the earliest mention of the term.

When Karen first mentioned it to me, I thought it would make a perfect title for this book. I had previously come up with Broken Bowels, a catchy alliteration that describes what was wrong with me. Super Survivor would have been great too, but because it has a variety of other meanings and it's not a clear-cut definition or medical term, I decided to use it in the subtitle instead. I've also registered it as a domain to serve as this project's home for the future.

* * * * *

When Dr. Cusnir joined us, we continued our lively conversation about the subject, during which Karen brought up another interesting aspect. It highlighted the unique nature of my whole case when she said, "It doesn't happen very often that we had so many doctors and institutions involved, who were all on the same page".

How right she was: I was being treated across two different hospitals, both of them run by independent organisations. Wherever the right people were, that's where we went. We all communicated via seemingly unofficial and personal email channels, on our own time. We had severe insurance issues, despite of which I could get treatment. The bureaucratic red tape didn't matter.

In all of this, there's a beautiful word we need to pay special attention to. I've mentioned it over twelve times already in this chapter. The word "we". We went though all this together. We were successful because we were all thinking alike.

* * * * *

There are three theories I have as to why my case turned out as well as it did, and what turned me into a Super Survivor. Either all of this was a giant coincidence, equal to the epic odds against we as humanity have been created by evolution in this universe at this time. That's possible.

Maybe there was a Higher Power involved, a director who's pulling the strings unbeknownst to us. Someone who meant to bring us all together, with the right skills and attitude at the right time. Someone like God. That's also possible.

Or, and this one is my personal favourite, every single one of us made this journey possible because we all gelled extremely well with one another. As if we've been resonating on the same frequency through which we found each other. We just "clicked".

I favour the last option because I believe that we all had something in common, something unspoken that you can tell about someone else, whether you can put your finger on it or not. What we all had in common was that we were all willing to go the extra mile.

It's a personality trait not everybody has. But when you have it, you can't help it. Julia has it. I have it. Everyone in the crack team we were with had it. Let me give you some examples, and by all means this is not an exhaustive list:

Dr. Szomstein works 18 hours a day. I have no idea how he does it. He performs a surgery at 8am in the morning, then visits you at 2am to check if you're OK. That time frame doesn't fit into a 12 hour hospital shift.

Dr. Cusnir works across two offices in the Greater Miami area, and in between he's flying from New York to Bogota to lecture on the latest discoveries in colon cancer, because he has a need to spread the word.

Dr. Caso prescribes medication although he doesn't have an office yet, then cancels his holiday to make sure he can operate on me. Dr. Kuritzky is up to speed on cancer developments far outside the field he specialises in, inviting random strangers like me over for treatment. The list goes on.

This is why we worked so well together. We had in common what Steve Jobs used to refer to as the A-List Players. Our motives were not money, nor the credit for achievement. I'm not even sure we had a motive. We were just "us". And together, we made a miracle happen.

Did we just meet by accident? Was it a coincidence? Did a Higher Power bring us all together to share a moment?

You tell me.

* * * * *

"So what are you going to do now", Karen asked, just before we were getting ready to dismiss the meeting. I hadn't thought about my future recently. I wasn't aware that I even had a future until a couple of weeks ago.

My treatment was far from over at this point. There were various bits of my plumbing that had to be sorted out, there was the issue with my elevated kidney levels, and how my muscles were reacting to the dehydration caused by my ileostomy. I had only recently started eating solid food again and was still finding my bearings without the assistance of the TPN.

I had never once thought about what I was going to do next. I didn't think about Karen's question much, but without hesitation, as if it was the only thing that made sense, I said something like, "We must tell everybody". This whole journey. What happened, and how it happened. We must tell everyone that this was possible.

Keytruda had done such an terrific job at bringing me back from the brink of death, I felt that the world needed to know more about it. Drugs of this calibre need to be made available to more people, to as many as possible, to all of those who are suffering from cancer, and it needs to happen fast.

I know, you can't rush art, and I totally understand there are many potential dangers and side effects to be ironed out, but I cannot help but feel that I am the living proof that such miracles will one day be possible for everyone who's suffering from this disease.

Even if I am a medical and genetic odd-ball, one that means I react well to the current version of the drug, I am not that special. I'm just one of the very many unique individuals of a race we call humanity. Colour, size, gender, belief system, heritage, salary, sexual orientation - who cares, we're all One. If it is possible for me to be cured by this treatment, then it's only a matter of time until scientists figure out how it will benefit every single one of us.

* * * * *

We agreed that Keytruda played an important role, perhaps the most important role in the whole story. But so did the relationship we had developed to one another and the way we communicated, how we made decisions together and worked towards a common goal. That was equally important.

But another crucial point I want to leave you with is what I brought to the table. My attitude. My own approach to the whole journey, my thinking.

I'm saying this because it's something we can control. It’s something you can control. We can change our own attitude. We can change perception and beliefs. I'm not saying it's easy, but it is possible. We can change the people around us too. If you're not happy with your doctors, if you feel that you do not click with them, if you do not resonate on the same wavelength as them, go and change them. Find someone else.

And with different doctors come different treatment options. While this is a very simplistic summary, and deliberately so, my point is responsibility. It is up to us to make the right choices so that we can have the right experiences.

I have done it. And I'm not special. I'm sub-average. Look at the list of flaws I have, look at my faults and all that my life is lacking. I didn't take "no" for an answer. I wasn't born with this trait, I had to work extremely hard to make it my own. I'm not even good at practicing it frequently.

But my point is this: if I can do it, so can you.

If you don't know how, that's OK.

It's just like figuring out the Rubik's Cube.

There's Just One More Thing

We had crossed the finish line. The fight was over. Something inside me had known it since September. Now it was two months later since the penultimate surgery in October, and it was official. I was cancer free.

Yet strangely, the race to full recovery was far from over. I found myself in a weird limbo, trapped between almost cured and still in treatment. I felt like I was in a Columbo episode, where there was always "just one more thing".

Turns out that "the end" was not an easily definable line, nor did it feel as comfortable as I had imagined to enter into that new stage of my cancer free life.

When was this whole story going to be over? After the next surgery? Perhaps a couple of months after that? Was it after the next colonoscopy, in a year or two? Was it over already?

There was so much more to be done:

My ileostomy needed to be reversed, which would mean I had to go into hospital again for yet another surgery. I was still not taking any thyroid hormones, which meant that my water retention created bizarre effects all over my body. I had only just started to eat again and was receiving all kinds of mixed messages from my body about what he liked and disliked. I was developing a completely new relationship with my body around food.

And of course, my elevated kidney levels were still of some concern.

* * * * *

Part of me found all this really annoying. I wanted this whole thing to be "over and done with", and for good.

Another part of me really didn't care. There were times at which I was ecstatically happy just the way things were. I could spend hours sitting on a park bench and stare at a tree, completely happy and content with just being, enjoying the Here and Now and nothing else.

Bills? Surgeries? Medication? Appointments?

None of that mattered in those moments. In fact, there wasn't anything that mattered anymore. Whatever "first world" aspects of my prior life I was thinking of, I couldn't take it seriously anymore. Everything seemed petty in comparison to the feat we had just achieved.

At other times, the harsh reality would close in again. The above list would come back into focus.

The new year was just around the corner so there'd be a new insurance plan to look into. Then of course there was a tax return that needed to be filed and our long standing British accountant, from Boca Raton, had decided to go into retirement. It was... perfect timing!

I'm not going to lie to you, but we perceived the re-integration into "normality" as a bit of a come-down. Life goes on, the world keeps spinning as if nothing special had just happened.

But it had.

It's so important not to forget that.

* * * * *

When I was in my twenties, I never had to get up at night to pee. I could sleep until sometime in the morning without interruptions. Back then my bladder capacity used to be 568 ml or just over half a litre.

I know this because I used to share a house with two other guys when I was living in South London, in an area called Nunhead (that's near Peckham). We only had one bathroom, and every now and again, somebody would inevitably have a long shower during which nobody else could use the toilet. So the only other two alternatives to relieve oneself were the garden, which given that it was usually too cold to venture outside in the morning, wasn't really an alternative at all, or there was the kitchen.

The kitchen sink was too high to reach without a 28" penis, not to mention it's just not a sanitary thing to do. On the very few occasions when it was necessary, I grabbed a pint glass that one of us may have accidentally picked up from a night out at the pub. I could fill it up right to the very top, which in the UK is exactly 568ml.

Fun Fact: Pint sizes are different in the UK and the US. A British pint, also known as an imperial pint, is as I said 568ml. But an American pint is only 473ml, which is a whopping 20% less. That was really confusing to me when we first moved here. Were Americans being ripped off in pubs and supermarkets?

Turns out both versions of pints are correct, because a "pint" is a measure for an 8th of a gallon in both regions of the world. It is the size of a gallon that differs: in the UK, an imperial gallon is made up of 20 fluid ounces, while an American gallon is made up of only 16. It goes back to Victorian times and some new legislation introduced sometime in the eighteen hundreds.

But I digress. So in my twenties, I never had to get up at night to urinate. Then in my thirties, I gradually started getting up once every night to visit the bathroom. It's part of getting older.

Today, after cancer did that hatchet job invading my bladder, and after the friendly team of surgeons rectified the situation again, my bladder volume is closer to 250ml. That's less than half of what it used to be.

Right now we are not sure if this capacity is going to increase further, only time will tell. It's actually fantastic considering that for the better part of a whole year, my bladder was in a collapsed state and the size of a walnut.

In addition, I rejoice at the thought of still having a usable bladder.

* * * * *

Dr. Szomstein was happy with how well my body was healing the colon/rectum connection he had made in October, and we set a date for the final surgery for the 19th of December 2017. It would be the ultimate Christmas present for me to have a completely continuous GI tract again.

What a treat indeed!

I had to get a new hospital clearance form Dr. De Leon, whom we would see for the last time before our new "improved" insurance plan would demand us finding a new doctor. Sadly, Dr. De Leon's practice would no longer be covered under our new plan.

He was thrilled to see me again and was amazed how well I had recovered from the previous surgery. I told him about the ERAS procedure and what wonders it did to my wellbeing and recovery.

Dr. De Leon was less concerned about the insurance plan and the fact that this appeared to be our final appointment. He suggested to keep in touch no matter what happened, explaining that insurance plans and networks change so quickly, it was important to keep an open mind.

That's what an A-Player would do. Screw formalities and keep the bigger picture in mind. We had a wonderful relationship going, how could a tick box in a web interface compete with that?

We exchanged email addresses and I promised to keep him updated about future events.

* * * * *

When the final surgery date came, all went well. I could tell the difference between the previous ERAS treatment and the "regular" method of preparing patients though. This time I was heavily sedated, was not allowed to drink eight hours before the procedure and it all felt a little less "VIP" than our previous visits to the pre-op suite.

Dr. Szomstein was in good shape as always. He removed my ileostomy and closed me up, returning me into a normal person again.

The procedure took place during the Hanukkah period, and I couldn't help but notice that he had put exactly eight staples into the hole where my ex-ileostomy had been, four on either side, with a small gap in the middle. Perhaps it was coincidence, but the placement reminded me of the many menorahs we saw around this time.

After we were discharged, I recovered during the holiday period and into the new year. Considering I was still recovering from the penultimate surgery, I believe I did very well.

Follow up appointments with all my A-Player doctors were scheduled for the new year, before which it was necessary to have referrals to see them from my new primary physician.

* * * * *

Meeting that man was a hoot. Florida Blue had assigned us a new doctor, some 40 miles from where we lived. I don't even remember the man's name. I'd like to refer to him as Dr. Who. I never met him.

Instead, I found a suitable candidate a few blocks away from our home, in something called the PET Centre on Collins Avenue. It was a small office associated with the Jackson Memorial Hospital, yet another major healthcare player in the Greater Miami area.

If the late great Richard Attenborough would still be with us today, his line would undoubtedly be, "There was a THIRD hospital".

I didn't really want to meet a new doctor, but under our new insurance plan, the regulations had changed. I had to go and see him so that he could write referrals, just so that I could keep my relationship with all the specialists that had looked after me for the last two years. Without those referrals, I would no longer be eligible to make appointments with my A-Players.

The new man was fabulous. I met him in January 2018. He was Cuban, in his late fifties perhaps, barely spoke any English and had no interest whatsoever in what had just happened to me. He had no comprehension of how well my body was doing considering the circumstances.

All he did was to look at my blood work, which when compared to a healthy person my age, was a complete mess. It showed signs of highly elevated kidney levels, low electrolytes, severe vitamin deficiencies, increased cholesterol and lipid levels, all too high for comfort. He didn't care that I had only started eating two months ago.

Thankfully he understood the importance of those referrals and issued the appropriate ones for the Doctors Szomstein, Caso and Cusnir. In addition, he typed out prescriptions for at least six different medications that should "whip me back into shape". Among them was Atorvastatin, Vitamin C, Vitamin D, some folic acid, an iron sulphate substitute, and of course my good friend Levothyroxine.

I decided not to take any of these until I had a word with the rest of my specialist doctors.

We all agreed that my body would sooner or later normalise all these levels by itself, if we just let me "live" for a bit, without performing frequent surgeries or administering heavy drugs.

The only useful pill that came from this meeting was Levothyroxine, which was giving me access to the missing thyroid hormones T3 and T4 that my body could no longer synthesize by himself. Over a period of two months, my weird muscle issues, ankle swelling and facial puffed-ness disappeared and the pitch of my voice increased again.

The man was only doing his job, and I don't blame him for it.

Nevertheless it drove home that "normality" had begun to reign over our lives again and bureaucratic mumbo-jumbo, such as unnecessary meetings to cut some red tape, were apparently necessary to make that point.

* * * * *

Over the following months, as the effects of the final surgery had worn off and Levothyroxine was kicking in, the big question on everyone's lips was, "Where do we go from here".

We had beaten cancer this time and no evidence was left of it. But would it come back? How would we know? And when would that be?

Given that my cancer is genetic, there is a good chance that this bastard could come back at any time. Thanks to the genetic testing, it's safe to assume that my personal mega nasty mutated uber aggressive super cancer would only ever spring up in my colon again. This would leave other areas of my anatomy relatively safe.

Early research indicates that there is a possibility that once Keytruda has been administered, the immune system will never be the same as it was before. As such, there is a good chance that my immune system will "remember" what cancer looks like and it may be able to attack it before a mutated cell has a chance to spring up.

That would be very cool!

We don't know if that's the case yet, as this research is still in its infancy. Can you image the implications of such a discovery in principle? Imagine a world in which people can get "immunisations" against potential cancer outbreaks, be those genetic or age related.

One day, science will do it. Again. Many cures against once deadly diseases have been found over the years, I have no doubt that one day, the same will be true for cancer.

Dr. Cusnir decided that an annual CT scan should suffice for the first couple of years and following that we'd increase the gaps accordingly. As deadly and aggressive as my cancer is, knowing that we have a secret weapon makes me sleep easy at night. We may never have to use it again.

Dr. Szomstein suggested an annual colonoscopy starting in 2019 should do the trick, at which point any potential polyps could be zapped. Those polyps can turn into cancer, which is why early detection and regular colon examinations are so important.

Take it from me when I tell you it's worth it.

Dr. Caso had no doubt that my bladder would be doing fine and to keep in touch once every year. He volunteered to keep an eye on the potential risk of prostate cancer. That's a story for another time.

And that, as they say, was that. Life goes on.

* * * * *

I'm glad that for now, I can close the book on cancer. I'm glad to see the back of it. I can't say I'm missing it. The whole "bodily function diversion" chapter, all those surgeries, the countless amount of infusions and hospital visits. It's lovely to have all that time back in my life.

It sounds weird, but there are also aspects about the whole affair that I sorely miss. When I think back to those horrific years, it's not the pain and the agony I remember. Not the fear and panic, not the dark thoughts and the worst moments. Not the bad stuff.

What I remember most and what I'll miss are the people that came into our lives. The ones that didn't give up on us, the ones that didn't lose hope. The A-Players. The moments we had together and the awe-inspiring miracles we were able to witness. The highs and lows. The victories. The stuff we made happen. Together.

That's what I'll miss.

Goodbye

Alfred Hitchcock once said, "A Happy Ending depends on where you end the story". I guess this holds true for my story as well.

The beginning of 2018 is certainly a good ending to my story. The future is yet to be determined and all I have right now, at the time of writing, is the Here and Now. Where life will take me next I cannot know. Maybe I've seen the last of cancer. Maybe it'll come back for another round - in which case, let's kick its butt again.

I must confess something to you. Honestly, I don't want this book to end. I don't want to finish it. There. I said it.

I keep thinking of more things that have happened, more people that I've met on this journey. Like the chaplain who gave us an inscribed bible in hospital. The volunteer who came in one day with his guitar and performed an old "America" song by my bedside.

There's more to say about Michael, head nurse in the infusion suite where I got most of my port flushes and Keytruda infusions. Emma, my personal aromatherapist who showed me what a difference the right smell can make. All those wonderful nurses who looked after me.

One of them was Jeffrey, whom we met twice. She had a partial hip replacement only two weeks before we met her, but she was already back at work doing a 12 hour night shift. In one of my darkest hours, she gave me hope to stay strong, pull through and not lose hope.

There was this one time when my dentist insisted on taking out my wisdom teeth but because I was getting cancer treatment, she had to get clearance from Dr. Cusnir. And he said, "Go ahead with the dental work, but don't do anything crazy". The dentist suggested to take out all four wisdom teeth at once, and Dr. Cusnir said, "that would be crazy!"

There's just so much more. I feel like I've barely scratched the surface.

But I have to stop this project at some point and move on. Otherwise this tale will never see the light of day. That would be a bigger shame than to stop writing and abandoning it at this stage. It's not as finished as I would like it to be, and I could probably keep working on it forever, but that wouldn't do anyone a favour.

Not only is there more to say, there's also how I could say things. Add another couple of words here, take one away there, rephrase this or expand that. It's all semantics at some point.

And that point is now.

I'm sure you want to move on to another book yourself. I can understand that. There's really only so much you can read about cancer, about bodily functions, surgeries, medical jargon and hospital visits.

Part of me wants to move on just as much. I'd like to be "done with it"; put this whole chapter behind me and pick up the pieces of what's left of my life.

Then of course there's this huge archive of my personal video diary that I've made during my journey. I've not had the strength to watch much of it myself at the time of writing, but as soon as I do, I'll start sharing some of it. I did peek at the odd episode, and I don't mind telling you that some of it is tough stuff. But other episodes are hilarious.

See, with our memories about painful situations, the human mind finds ways to cope by "watering things down" if you forgive the phrase. It's not that we deliberately misremember, but there are certain things, like pain and colour, for which we do not possess the ability to accurately remember. Try buying a matching blue scarf for your favourite cardigan without taking the cardigan to the shop. You'll swear it's the same blue while you're there, but when you see them side by side, they're most certainly a different shade.

With pain it's even worse: we feel it when it happens, and we remember it to be "really intense", but we cannot recall the actual painful feeling sometime later. That's a good thing! Otherwise, the pain of child birth would prevent our species from ever producing another offspring. It would certainly drive dentists out of business entirely.

Those are the coping mechanisms of our brain.

When we see pictures, moving or still, we can bring back some of those feelings we had when said images were recorded. That's true for both pleasant and painful memories. The better the quality, the more vividly our memories can be recalled.

In my case, seeing videos of me in Full HD at 1080p, explaining to myself what's happening in my darkest hours, I can't help but cry.

Rethinking it and writing it all down is bad enough, but by putting a slightly humorous touch to it, my brain is happy to wander down memory lane (albeit creating a slightly skewed and perhaps inaccurate picture).

* * * * *

As I'm writing this, almost 6 months after my last and hopefully final surgery procedure, I had the pleasure to celebrate my 46th birthday. Happy Birthday to me!

Only two years ago, when I was in the middle of my treatment and when things didn't look so bright, I didn't think this day would ever come. In fact I didn't look ahead more than a month at a time and was living from one appointment at the hospital to another. It had become normality for me.

Today I'm looking at 46 as the beginning of the second half of my life - as if this was a football match. Oh yes sorry... when I say "football", I actually mean soccer. The one that's played with a round ball that the players are not allowed to touch with their hands.

Don't get me wrong, I'm not really a fan of the sport, nor any of the major televised sporting events, but I guess working closely with many Premier League football events like the English, Scottish, French, Spanish, Italian, Argentinian, Belgian and German Leagues for over a decade means something must have rubbed off on me.

I remember doing a self development workshop with the great Terry Cooper and 30 other men once. This was many years ago in the middle of the Welsh countryside, in the Brecon Beacons to be exact, at a place called Buckland Hall. The workshop wasn't about anything specific, and we all came from various walks of life at very different stages of our lives. I must have been in my late twenties at the time.

There was one participant in our group who had just turned 46, and he was a football fan. For him this was a big deal (turning 46, not being a football fan).

By the end of the workshop, he had seemingly come to terms with the fact that he was getting older, and that it wasn't such life-threatening problem after all. Rather than seeing the fact that he had just turned 46 as the beginning of his dotage, and the end of his prime youthful years, he began to understand that life doesn't change dramatically just because we increment a single integer digit.

"It's just a number", I told him, and explained that I always felt that our "counting elapsed time on the planet" is not a barometer of where others think we should be in our lives, or how we should feel about ourselves. Nor is it a good indicator as to what we've achieved. It's very arbitrary, and we often judge more by that number than we should.

"You're too young for this", or "you're too old for that" are common criticisms for putting people of all ages in their places. Even though it works well to shut down arguments or embarrassing questions, letting other people judge us by our age doesn't really make sense. We should be the ones deciding if we're too old or too young for something, not society.

I had a music teacher at school once, a woman by the name of Susanne Shehata. If anyone ever commented on the great deal of experience and understanding she brought into her projects, she used to tell us that age is not something anybody earns by hard work. "You get there all by yourself, even if you never lift a finger. It's not an achievement", she used to say. And that insight still rings true for me today.

I'm terrible at remembering dates. Birthdays in particular. It's embarrassing when some institution asks, "And what's your wife's birthday?" and I have to look it up to make sure I get it right. Usually the numbers are correct, just not necessarily in the right order.

To be fair to myself, after fourteen years of marriage I can just about remember my wife's birthday by now. I can also remember my Mum's birthday and my own of course. That's really where my memory for dates stops.

I remember there was a colleague at work in the early nineties. We weren't working in the same building, so we wouldn't see each other regularly, and one day she sent me this vicious email along the lines of "Congratulations, you've missed my birthday. Again."

Needless to say we're no longer on speaking terms.

I'm bringing this up because it shows that for some people, the linear passage of time and commemorating each passing year is very important. It's the way we've been brought up in this society.

When that arbitrary counter hits 18, it's totally fine to buy alcohol in most European countries. In the USA, that counter needs to climb a little higher and reach 21. In Germany, you're allowed to buy beer when that counter hits 16.

Does that make sense? As I said, it's arbitrary. Age means different things to different people in different countries.

Or, to put it bluntly, it means nothing at all.

I forgot the name of that workshop participant, and we weren't close, we only met that one time - but his description of 46 being the "kick-off of the second half" stayed with me all these years. And I'm truly grateful that I'm here today, celebrating the start of my own second half.

By that measure, 90 would be the end of our lives - although there's usually some injury time at the end of a match, at the discretion of The Referee. Then of course there's extra time on certain matches, that's an additional 30 minutes, which means we could all live to at least 120 if not older. As of 2018, that's not an uncommon age to get to.

Women seem to have the upper hand over men, having a slightly higher life expectancy. It appears that those living in Japan have the highest life expectancy on the planet overall.

All these ideas can only become true of course if we're not being dragged off the field beforehand, either due to a serious injury or a red card. I guess the latter would be the equivalent of a prison sentence, while the "serious injury" could be compared to an illnesses like cancer.

I guess it all comes back to that Rubik's Cube Analogy I was talking about earlier. It's about what we choose to believe.

Today, I choose to believe that I've reached the beginning of the second half of my life. Who knows however many years that will be exactly. It makes me feel good to believe that. I'm excited about all the projects that lie ahead.

Only a comparatively short time ago, I chose to believe that my days on this planet were drawing to a close. That I would most likely not see my 44th and 45th Birthdays. Lucky for me I didn't have any regrets. I still haven't. I always wanted to avoid the moment from the movies, where the "old guy" is lying on his death bed, surrounded by relatives, and his last words are "I wish I had done [insert highly important event here]".

That's my lifestyle. I never left things "for later in life". I did what I did when I did it, because I thought that "now" is the right time to do something. After all, you can never really know if you'll be alive tomorrow or not.

Not one of us can do that.

The trouble with my previous choice of truth, as in not surviving my next Birthday, was that it didn't make me feel good. That's a snag! It's important to realise this, to become aware of such feelings. Then it's a comparatively simple matter of changing what doesn't make you feel good. If "Belief A" makes you feel bad, try out "Belief B" and see how that makes you feel.

I find it fascinating to see how quickly such truths can change. Seemingly overnight, consciously or unconsciously. What's more important is the notion that each and every one of us has a choice in this matter. It's us who make things happen.

Many things in our lives don't just happen to us. We're not the powerless victims who have to deal with an unforeseen situation all of a sudden. We can prevent bad things from happening.

Take my late friend Julian for example. He was cycling through a park in London one afternoon, wearing a high vis jacket and a group of rowdy teenagers pulled him off his bike and badly beat him up. All he heard them say was "you shouldn't have worn that jacket".

That's terrible! What kind of world do we live in?

When he told us the story, I remember him telling us also that he saw that rowdy group of strangers from a distance before he even reached them. They were behaving rather suspiciously and most of us would probably have said, "perhaps I'll find a different route through the park this afternoon, just to be on the safe side".

Julian chose not to do that. Whether he knew exactly what would happen or not, it was still his choice. Perhaps it wasn't a conscious choice, but nevertheless his choice.

I'm not saying that he chose to be beaten up, not at all. I'm sure he did not want this to happen.

So what am I saying here? Should we not ride bikes through parks anymore? Should we avoid strangers at all costs? Should we stay away from wearing high vis jackets?

No, not at all. As soon as we realise that we have a say in what happens to us, as soon as we become aware that we have the power to change things, simply by what we choose to believe in, we must realise that we have a certain power. Some might suggest we even the power to change the world.

Now that sounds a little too "world domination" to me personally, so I'll suggest instead that we have the power to change the circumstances we currently live in. My point is that we are responsible for the experiences we make.

Although I can't tell you exactly how my own thinking changed from "this treatment isn't working, these people can't help me and I'm probably going to die" to "there must be a treatment as well as people who can cure me", I can tell you that this process did indeed happen.

Maybe it was because God intervened and had other plans for me, or a Higher Power chose to show me the right websites with the right phone numbers at the right time.

Or maybe it was because I was determined enough to change my own thinking, and it was my own power that led to the events of my wellbeing. Perhaps I'd charmed everyone around me into delivering their best results to bring out the A-Player in everyone on the team.

To be honest, I really don't know what to think. All I can tell you is how it all happened. I can't explain it.

Think of it like air travel: you can buy a ticket, you end up on the other side of the world, you witness what's happening, but you can't really explain how it works.

You be the judge. You take from it what you need.

* * *

Tell you what: if you're as bad at "letting go" as I am, head over to my new website. I've created one specifically for this project. If I have anything else to say, anything from graphs of my blood work to sad or funny videos, you'll find it there.

At supersurvivor.tv.

In the highly likely event that you've found a typo or other technical/medical inaccuracy, please let me know so I can update such bugs in future editions.

If you liked this book, please share your thoughts with me and other readers by leaving a review on Amazon. I would greatly appreciate it.

If this book did something for you, tell others about it. In fact, buy them a copy and demand they read it.

Thank you for listening.

Credits

If this was a movie, this would be the end credits. It's the part where the action is over, everything has been said, the lights are turned on while people make their way out of the cinema while discussing how they liked the hair cut of "Supporting Actor #3" halfway through that funny coffee shop scene.

It's an important transition between the main action on the screen and getting back to real life. But it's even more important because it gives the crew who brought you the two hours worth of entertainment the credit they deserve.

My survival wouldn't have been possible without a great number of people, all of whom I love dearly. Thank you all for your time and your patience.

Thank you all for saving my life!

* * * * *

[cue music: "Americanos" by Holly Johnson (if we get clearance)]

* * * * *

Dr. Lester De Leon, primary care physician

Thank you for your holistic approach to medicine, thank you for looking after us since our arrival on Miami Beach, and thank you for your insights about my mission.

Dr. Karen Stephenson, nurse practitioner

Thank you for the Super Survivor t-shirt, thank you for the website feedback, thank you for the iPhone case, and thank you for the many stat requests.

Dr. Mike Cusnir, oncologist

Thank you for your expertise, thank you for your never ending positivity, thank you for having backup plans, and thank you for finding a way to give me access to immunotherapy.

Dr. Nicholas Kuritzky, radiation oncologist

Thank you for shrinking that tumour, and thank you for finding a way to accept our unacceptable insurance plan.

Dr. Marcos Szomstein, colon surgeon

Thank you for repairing my Broken Bowels, and thank you for your insightful funny stories about how you did it. Looking forward to my next colonoscopy already!

Dr. Daniel Martinez, urologist

Thank you for the meds against bladder spasms, and thank you for resecting that nasty bladder tumour. Twice.

Dr. Jorge Caso, urologist

Thank you for leaving my bladder intact, thank you for your gentle, positive thoughts throughout this journey, and thank you for cutting your vacation short just for me.

Dr. Lisa Rubiano, internist

Thank you for listening, and thank you for your wonderful coordination efforts between two hospitals.

Dr. Milton J. Gaviria, infectious disease specialist

Thank you for the PICC line, and thank you for nuking my many infections.

Dr. Javier Parra, internist

Thank you for your calming energy, thank you for the advice about the stationary bike trainer, and thank you for your thoughts on un-popped popcorn kernels.

Julie Rothenberg, nutritionist

Thank you for our inspiring conversations about the human body, thank you for your endless passion about nutrition, and thank you for my surprise birthday card.

Gail Brown, social worker

Thank you for being there for us from day one at Mount Sinai.

Armando Riggi, pharmacist

Thank you for mixing hundreds of TPN bags, and thank you for feeding me for several months.

Nurses and Administration Staff, Mount Sinai & Baptist Hospitals

There are too many to list here, but thank you for looking after me and thank you for seeing us through this difficult time.

Juan Cabrera, driver

Thank you for the jokes, the mangos and the Spanish lessons.

Gladys and Donald Muller, ex-neighbours

Thank you for inviting us to the Prayer Meeting, and thank you for your prayers.

Alfred and Alejandra Petit, landlords

Thank you for taking care of our broken air con unit. Twice!

Cedric, water guy

Thank you for your endless positivity, and thank you for making me feel at home every time I come to the beach.

Bob, fellow Starbuck's patron

Thank you for sharing your table with me, and thank you for your encouraging words. They made me hit the deadline for this book.

Merck & Co, pharmaceutical giant

Thank you for making Keytruda.

Steve Shepard, author and software artist

Thank you for Storyist, and thank you for sorting out that stale bookmarking bug in version 3.5.1 in record time.

Oliver Spanuth, drummer and life coach

Thank you for accompanying me through this journey, thank you for always being there, and thank you for our many inspirational conversations.

Jayshree and Mukesh Patel, dearest friends

Thank you for your ongoing support, thank you for your check-ins, and thank you for your frequent visits from Ohio to Miami.

Marion Summerfield, dearest friend

Thank you for all the funny cat videos, thank you for your prayers, and thank you for your support from across the pond.

Jerry Hyde, gonzo therapist

Thank you for showing me the way all those years ago.

Martina Versluis, Mum

Thank you for your support, thank you for your energy, and thank you for your many visitations.

Adelaide Watton, Mum

Thank you for your endless recipe and culinary ideas, and thank you for your very positive energy.

Julia Versluis, sunshine of my life

Thank you for our beautiful relationship, thank you for being as crazy as I am, thank you for moving across continents with me, thank you for editing the manuscript with me, thank you for being with me every step of the way, and thank you for never giving up. I love you.

* * * * *

This is only a small snippet of the long list of people who have helped us through this journey. Thank you to everyone I have forgotten to mention.

* * * * *

Soundtrack and Music Credits

Nick Gibbs - My Mind It Runs Away

Betty Carter - That Sunday, That Summer

Buena Vista Social Club

Take 6 - Take 6

Maurice Vander

Denise Donatelli - When the Lights Are Low

George Duke - Brazilian Love Affair

Dizzy Gillespie - Live at the Royal Festival Hall

Christopher Cross - Leave It To Me

Michael McDonald - I Believe

Most tracks are available on Spotify

* * * * *

Written with Storyist - http://storyist.com

Written on Apple hardware: a MacBook Pro (2011), a MacBook Air (2011), a Mac Mini (2012), the New iPad (2012) and two iPhones (2013/2015).

Cloud storage courtesy of DropBox.com.

Coffee and writing space furnished by Starbucks.

Donald Fagen appears courtesy of Warner Bros. Records.

Holly Johnson appears courtesy of MCA Records.

* * * * *

And thank YOU for reading this book :-)

Statistics

Surgeries: 6

Hospital visits: 97

TPN bags infused: 247

C Batteries used: 494

AA Batteries used: 32

Chemotherapy infusions: 20

Immunotherapy infusions: 12

Radiation treatments: 29

Alcohol wipes used: 2473

Adhesive Remover wipes used: 362

PICC lines administered: 2

Saline syringes used: 862

Heparin Lock syringes used: 194

Disposable gloves used: 1869

Antibiotics infused: 157

Infusion lines used: 592

Saline bags used: 379

Number of scans (CT, PET, MRI): 26ish

Blood samples given: 133

Blood transfusions received: 7

Indwelling catheters worn: 13

Rubik's Cubes solved: 57

Videos recorded: 471

Sleepless nights: 127

Nights spent in hospital: 45

Media attention received: 3

Highest Level: Super Survivor

T-Shirts received: 1

Tumours resected: 3

Appendices removed: 1

Cancers destroyed: 1

Bladders saved: 1

Lives lost: 0

Broken Bowels

Jay Versluis