Here’s a little presentation I have at the 3rd Annual Oncology Symposium. It’s been postponed a few times and finally happened on the 2nd of October at Margaritaville in Hollywood. It was fun to be back and talk about my case, and see so many familiar faces again. The event was much bigger than in previous years, with 45 exhibitors and over 100 attendees. Success!
The feedback I got from the audience as well as YouTube comments was wonderful and heartwarming, and I can’t quite believe it has been 4 years almost to the day that I’ve been declared officially cancer free. I love being able to commemorate the occasion in style.
Julia and I helped out with the AV tech on the day, making sure the presenters had access to their slides and all other materials we needed for the day. Like last year, I brought along my streaming PC and transmitted the event live on YouTube. We had a viewer from France who was into T-Cell research and he enjoyed the many topics that were discussed. You can watch the whole stream here, it includes time-codes for all speaker segments. I’ve also split out all presentations and uploaded them to our dedicated Oncology Symposium channel, alongside last year’s presentations.
I had an email from the friendly folks at ConvaTEC (or rather Ostomysecrets), purveyors of fine ostomy supplies and apparel. I’m still on their newsletter ever since my ostomy days so I still get updates on their news. Although I no longer have a need for those supplies, I really like the occasional reminder of what I needed during my ostomy time.
Every first Saturday of October is the worldwide Ostomy Awareness Day, and 2020 marks the 10 year anniversary of this ritual. I had no idea until literally this year.
As such, the whole month of October is classed as Ostomy Awareness Month, and CovaTEC had these t-shirts in stock for $5 plus shipping. I couldn’t resist and bought several, both to support the project, and to send to friends around the globe so they can celebrate with every current, co- or ex-ostomate in style.
October is a special month for me in regards to ostomies: I had my colostomy successfully reversed and turned into an ileostomy in the month of October. I had it for 9 months by that point, my hernia was giving me grief, and although we had always planned to reverse it, you’re never sure if that’s how things will turn out when you go in for the procedure. Lucky for me it went well, and I came out with an ileostomy. Dr. Szomstein (my colon surgeon) did this to make sure the that the lower part of the connection could heal properly.
After 10 more weeks with my shiny new ileostomy, he could reverse that too – and I am ostomy free since December 2017.
I wouldn’t have survived my journey without the two ostomies. My cancer had wreaked havoc to so many parts of my GI and urinary tract; we had to literally divert everything we could so I wouldn’t continually get infected. It was a tough time, and I remember seriously disliking the effects that ileostomy had on my body. It was far worse than my colostomy: I felt dehydrated all the time, I was constantly craving salt because my body didn’t get a chance to metabolise what I put in, and it felt like my stoma was in constant use.
At least with my colostomy, I had “quiet” periods that I could use to change the wafer in peace, and my skin could recover properly. This was not the case with my other stoma. The constant acidic leakage from my ileostomy meant that I had strong skin irritation with literally no chance for my skin to recover. I remember worrying that it might be difficult to close up the hole due to the raw and itchy skin, but thankfully that was not an issue.
While it was a nerve-wrecking ritual every morning, both of these contraptions meant that I was neither bed bound nor restricted in my daily movement routines: I could take walks, I could take relatively long bike rides, and once taken care of in the morning, there wasn’t much to worry about for the rest of the day or night – apart from empting the bag regularly and keep an eye on it. Much like with any task that seems impossible at first: if you have the right tools to do the job, dealing with the toughest tasks becomes possible.
So there we go! Let’s celebrate Ostomy Awareness Month together, with or without a shirt. Let’s think of those who are dealing with ostomies every day, patients and carers alike, and purveyors of ostomy supplies.
I gave this motivational talk at the Oncology Symposium 2019 in Hollywood, FL. It gave me a chance to describe what it’s like to survive cancer when the common treatment methods fail, and how immunotherapy (specifically Keytruda) saved my life. This is an abbreviated version of the story I’m telling in my book BROKEN BOWELS.
I didn’t have notes or a presentation, and did all this from the top of my head, while taking care of the event streaming and tech. Perhaps I’ll make a Power Point for next year 🙂
A reminder to all of us that making mistakes isn’t a bad thing at all, quite the opposite: it’s an opportunity for growth and to get better. Our endeavour to be “perfect” all the time and not make mistakes may well be the cause for limited growth.
Two years ago, somebody told me that I should start a YouTube channel and share some of my positive vibes with the world. I smiled, at the suggestion, not realising that I had already done so. Looking back at this incident, I’ve realised what a great idea that was.
