27 April 2023

As I sit writing this I have just had a call from Michaela the wonderful and comforting colorectal nurse at the Royal Free hospital confirming my latest scans and blood tests are clear with my CEA test results indicating the absence of bowel cancer. For the record they were 1.9 which is reassuringly low.

Naturally, this was very welcome news.

That fact is the feelings of fear and panic every time I have a scan sadly never diminish, nor does the worry that something unusual may have been identified and I would be back to the dark and terrifying and lonely days of May 2020 when I had surgery to remove a large bowel cancer tumour.

As more time passes (I am almost three years clear now) I would like to say I think about a reoccurrence less and less but to be frank that would not be true. The fear for anyone who has experienced any form of cancer is always at the back of one’s mind and very occasionally surfaces in full strength, often in the middle of the night. Will everything be ok or will ‘it’ have returned?

Let’s be clear I am not a negative personality and am determined that having had bowel cancer, I continue to appreciate just how lucky I was that I received excellent care and that it has been dealt with. I am also grateful for the screening and follow up care I continue to receive.

I am equally determined that having been a patient in the past does not define who I am going forward. This is easier said than done as I am sure readers will understand, and every time someone comments on my appearance – I lost a lot of weight – I have to work hard on acknowledging the compliment and not giving them a 20 minute lecture on why and how I am much slimmer these days.

Although prior to my procedure I had tended to keep fit through a mixture of spinning and walking, and while I had never been a runner (it seemed like too much hard work and something I loathed as a school boy) this changed when I came out of hospital. At the time having spent over two weeks in bed recovering I had lost a substantial amount of body mass, particularly muscle, to such an extent that when I was discharged I used a wheelchair and was barely able to walk.

This was an incredibly alarming experience for someone who was previously active. In fact, I actually  had to learn to walk again over the next few weeks but each day I was determined to extend my daily walk by 10 minutes at a time and motivated myself by aiming to be fit enough for a 5k run.

I achieved this some six months later having built up gradually and when I hit my target in the middle of the local highstreet when my watch pinged to let me know, I jumped in the air and screamed! Surprised shoppers looked at me to see if there was something wrong but I decided that they didn’t need to know the back story!

Running has now become part of my daily routine, and I’ve discovered a whole community who are out early morning on the same circuit. Often I wonder why they are out running and what their reasons might be. As my late grandmother said, “behind every closed door there is a story!” When I am exercising it allows me to get clarity of mind and focus for the day to ensure I get the most out of it, which is something I never thought about before.

I was recently interviewed for a podcast and asked about the every day accommodations one has to deal with after bowel surgery beyond the psychological adjustments of not being a victim as I mentioned above.

Thinking this through I am sure the common theme for everyone who has had a similar experience must be the issue of looking after your health and digestive system and remembering that something has fundamentally changed in your body.

I have completely altered my eating habits, changing from as and when to often and regular. Having had two thirds of my bowel removed means that I both have to watch what I eat (no more beloved fish and chips,  which is a real loss as an northerner), no more steaks and limited spicy food as I find them hard to digest and regret eating them for days afterwards.

But I also must plan ahead to find access to a toilet around an hour after I eat because, to put it in simple terms, I have less storage space than most and therefore a specific need that does not give me much warning. Some people might be horrified by both the candid admission and the challenge this brings, but what I can tell you is with proper foresight it is never a problem.

As long as I can confidently walk into any shop or hotel –  especially with my Bladder and Bowel Community “Just Cant Wait “ toilet card  – this has never been a problem. I’m now thinking of writing a good loo guide for the City and West End of London! As I often say if this is my biggest problem I am a very lucky person.