I had taken a couple of months off from writing, but with a new deadline in place, I’m very eager to dash for the finish line. To see where I stand and what I’ve got so far, I’ve decided to print out the whole manuscript and read it. I’ve shied away from this before because I thought it still needs too much work and it’s way too early to waste paper at this stage.
Turns out that, inclusive of the writing diary I keep alongside the main manuscript, the whole wad is about 2 inches thick and over 400 pages long. Wow! That’s slightly more than I had expected, and I’m not even close to finishing yet.
I’ve missed my first self-imposed deadline (which was the end of March 2018), so the new deadline to deliver the final draft is now the end of June. This will assure that BROKEN BOWELS can be released on the 4th of July 2018. Although completely arbitrary, I thought Independence Day would be a fitting date. You can pre-order the book here by the way.
I had a break from wiring because during the process, I decided to change the premise of the book. Or in other words, my motivation for writing has changed. I had set out to simply tell the story of my cancer years, what I went through, and how I got better. That’s an amazing story in itself. It would also serve as a nice memento for me so I wouldn’t forget what Julia and I have been through.
It was painful walking down memory lane and re-living the those moments of my cancer journey, so that’s certainly one thing that kept me away from the keyboard. But something else changed. The more I discussed my case with friends and family, the more I began to realise that a different question was becoming more interesting to me:
How did I actually survive? Both physically and mentally I mean.
To answer that question means I have to tell more about my thoughts at many stages of the journey. And for the reader to understand those thoughts and motivations, I have to tell a lot more about who I am and how I got to where I am today.
Hence I have so much more to write now!
The way I envision it at this point is that we have what I’d like to call the narrative, which is more or less how I wanted to write the book in the first place. Tell the journey and let the reader make the connections. At the same time we now have what I’d like to call interstitials, or off-story chapters that shed some light on my past and how I’ve dealt with extreme situations before. These two aspects will make for a very interesting reading experience, I promise!
As I see it now, the project is perhaps turning more into a self-help book for those who have been touched by cancer, but also for other readers who are open to the subject.
Here’s an entry in my video diary I’ve made. These are two days worth: one entry is straight after printing the 400 pages, and one is my reaction after I’ve read about half of it.
As of today, my new book BROKEN BOWELS is available for pre-order on Amazon. I’m aiming for a release date of Independence Day, on July 4th, 2018. Find out more on the book page.
The book currently has 38.000 words, which is the equivalent of 250 pages. Although I enjoy writing, it’s tough re-living the painful times in my mind and progress is slower than I would like it to be. The same goes for my video diary, which I’ve not had the guts to wade through and upload to a public outlet.
There’s so much work to be done, and with my life having been more or less on hold for the last two years, I have a lot of catching up to do – as well as present living to enjoy. I’m sure I’ll get there soon – and to hell with deadlines anyway.
I’ve recorded the above video in November 2017, shortly after I was discharged from my penultimate surgery, and just after I got the “all clear”. It’s probably a little long as a promotional and snappy opener, but it tells my whole story in some detail.
July 2015
Started exhibiting symptoms of painful urination and frequent diarrhoea. Ultrasound revealed a “mass” in my abdomen.
A CT Scan revealed an inflammation in the area that required treatment with strong antibiotics, administered via PICC line (Zosyn, Merrem and Invanz)
January 2016
Colonoscopy revealed a blockage at 15cm, mostly likely cancerous
February 2016
At Baptist Hospital, open surgery revealed a 20cm tumour, prompting a complete sigmoid colon resection and partial resection of several peripheral parts. Diagnosis was stage 3 colon cancer. Fistulas to bladder, appendix and caecum were also removed.
Chemotherapy was scheduled for April. I was given a temporary colostomy.
One week after discharge, a tennis ball sized tumour was discovered in my bladder and resected during a cystoscopy. As a result, chemotherapy was postponed by one month.
April 2016
Genetic Testing revealed that my cancer was caused by Lynch Syndrome. In addition, it was found to be K-RAZ positive and MSH-2 high. Bummer!
May 2016
FOLFOX chemotherapy was administered, but didn’t work.
After 8 infusions, the tumour had regrown to another 12cm monster while I was on Oxaliplatin and 5FU. The tumour was resected again on the inside of the bladder, however it was still present on the outside of the bladder.
The only recommended course of action was a radical cystectomy. But because Baptist Hospital could not perform this procedure at the time, we were refused further treatment and advised to go “elsewhere”.
We found Mount Sinai Hospital, who were happy to try an alternative approach, deeming a cystectomy as too radical.
July 2016
At Mount Sinai, radiation therapy in conjunction with FOLFIRI chemotherapy shrank the tumour from 12cm to 6cm.
August 2016
A fistula developed between my disconnected rectum and my bladder. As a result, I was now urinating from my rectum. Because of the fistula, we stopped the radiation therapy, but kept the chemotherapy going.
After a total of 8 FOLFIRI treatments, the tumour didn’t shrink any further despite increasing side effects.
December 2016
Stopped FOLFIRI in preparation for possible surgery
January 2017
The tumour started growing again instantly and a second fistula developed from my small intestine to the bladder, leading to a heavy abdominal infection.
To avoid sepsis, I was put on a cyclic TPN. At the time, surgery was deemed impossible.
My life was now a painful nightmare: I couldn’t walk anymore without the help of a stick and/or a wheelchair, had to urinate under extreme pain every 10-30 minutes and couldn’t sleep as a result. A full pelvic exenteration was on the cards, but due to my severely weakened condition couldn’t be performed.
Hence, my oncologist chose to give me a somewhat experimental treatment called immunotherapy.
February 2017
Started treatment with KEYTRUDA. No detectable side effects.
March 2017
Started feeling slightly better every day: less pain walking and less pain during urination. Started sleeping again. Felt fit enough to walk again.
April 2017
Felt fit enough to start cycling again, including rides to and from our home to Mount Sinai Hospital (about 8 miles in total).
July 2017
Spontaneous weight gain of 2-3lb per week, even though I was still on TPN and therefore controlled amount of calories. Suspected side effect was inflamed and probably fried thyroid. Otherwise I felt better than ever.
October 2017
Surgery was scheduled to reverse my colostomy and remove any residual tumour tissue, including a possible cystectomy depending on what an open procedure would reveal. Previous cystectomy in January showed plenty of necrotic bladder tissue, so the surgery required both a colon surgeon and a skilled urologist
The procedure was performed at Baptist Hospital and – to everyone’s huge surprise – revealed NO RESIDUAL TUMOUR TISSUE.
Fistulas were removed with minimal bladder resection. My colostomy was closed and a temporary ileostomy was placed. The TPN was stopped, and after 8 months I started eating again.
December 2017
In a second surgery, the remaining ileostomy was closed. Plumbing was now fully restored.
