The journey begins

It’s been just over a week since I emerged from Burton Hospital, shell-shocked, with Lisa by my side. Maundy Thursday 2023. That’s a day I won’t ever forget!

Three weeks before that I’d had a call from my GP’s telling me they’d referred me for an urgent colonoscopy due to "raised levels" in a stool sample I’d provided (I’m afraid there’s going to be fair bit of below-the-belt talk in these posts - "every day’s a stool day!", as my friend Simon joked). The doctor told me the colonoscopy was to test for cancer but also assured me it could be nothing at all.

I’ve since learnt that it’s uncommon for people of my age to get bowel cancer - 94% of diagnoses are for those over 50. I’m 48. And among us ‘youngsters’, four in 10 people visit their GP at least three times before getting a referral. I’d been to the GP’s a couple of times in the past six months, thinking I might have IBS (irritable bowel syndrome).The first visit, last September, led to a tentative diagnosis of IBS along with some blood tests (which didn’t show anything) and medication for when things flared up. But, after Christmas, I was still not right so I booked another non-urgent appointment four weeks in advance, thinking I’d probably cancel it as things improved. Lisa encouraged me to go, even though I expected the GP to shrug his shoulders and tell me to keep taking the pills.

Instead, he asked me a fair few questions, and said I’d be getting a stool sample kit in the post (whoop!). In hindsight, I now had three pretty clear signs that things were wrong: I’d lost half a stone in weight, there was sometimes blood in my stools and my bowel patterns were increasingly irregular - often evident when I’d have to dash to find an emergency supermarket/pub toilet (or bush) when out running.

In truth, things haven’t been right for a couple of years. I’ll spare you the full details (as I still want to quiz the surgeon on them when I see her/him in the coming weeks). And I have no idea how long my cancer has been growing. But it is some relief that I can now stop trying to figure out what’s wrong, which was taking up a fair bit of mental energy as I tested different eating habits and medications to sort things out.

I’d actually felt fitter and stronger than ever in early 2023. In the weeks before my diagnosis, I’d ran my fastest ever 10k and Parkrun (5k), done a couple of half-marathons and had interspersed runs with HIT workouts with my new pal Joe Wicks. That’s why I thought I was losing weight! I actually believed I was maybe turning a corner - but still things weren’t quite right and, where previously at this point in the year I might be planning to train for a marathon, I didn’t feel my body was consistently reliable or resilient, and I didn’t want to put any sustained pressure on it.

So, fast forward to Maundy Thursday. After the deep joy of drinking two litres of laxatives to clear my system, including one at 4am in time for my 8.15am appointment, I arrived at the colonoscopy unit at Burton Hospital. We were late due to traffic on the A38 and hadn’t brought face masks as required. Lisa wasn’t allowed in due to the ongoing Covid precautions. I sat down to wait my turn next to other patients, all quite a lot older than me. It felt weird. But the nurses were very warm, fitting a cannula for my sedatives, giving me some classy green disposable shorts with a velcro opening at the back.

I was a bit nervous about the colonoscopy, but it was actually ok. Despite having my glasses removed, I could watch the whole thing on the TV screen I was facing. There was a room full of nurses and my Australian colonoscopist. She explained that the camera would whizz through my bowels to my appendix (which I said ‘hello’ to for the first ever time) and then take a slower return journey to get a better look. Things seemed fine until near the end - in my rectal passage - when what looked like a large mouth ulcer appeared on the screen. The colonoscopist was concentrating and taking biopsies and, when I asked her if the ulcer was ok, she told me we’d discuss it afterwards when my sedatives had worn off. I was staring at my 4cm tumour but, for whatever reason, still hadn’t registered it was cancer.

I realised something might be up as I recovered on the ward afterwards, downing five custard creams and two teas due to fasting since 3pm the previous day. The nurse asked me if my wife was coming to pick me up and then said Lisa needed to come into the unit, despite the Covid restrictions, so we could talk about my results together. I hadn’t expected that.

Lisa arrived and we sat in a small private room waiting for the colonoscopist, who by then had started an examination of someone else. Eventually, she and a specialist nurse sat down and outlined what had been found, telling us it was 99% certain to be cancer. They were keen that we realised the gravity of this but I didn’t want to show any emotion at that point - I just wanted to get out of the hospital as quickly as possible. The nurse talked us through our next steps. At one point she disappeared to get my paperwork and myself and Lisa hugged and both burst out crying. Flip. This is happening. She came back and told me, kindly, that this was the start of my five-year journey returning to this unit. There’d be around six months of treatment ahead and then regular checks after that. And that she, and her fellow nurses, would be available whenever we needed them.

Despite the Easter Bank Holiday break, and some junior doctors’ strikes, things have moved pretty quickly. I had a CT scan last Wednesday and have an MRI scan on Monday. These will give a better picture of the tumour and see if there is cancer anywhere else. After that, hopefully next week, the surgeon and other specialists will sit down and decide my treatment plan, which will likely involve surgery and radiotherapy. It may involve removing all or part of my rectum and the need for a stoma (colostomy bag).

As we walked dazed out of hospital, Lisa commented that “these things don’t happen to us!”. What she was saying was that, although we have experienced some heartache, loss and difficulties as everyone does, this type of surprise, serious badness is not something we’re used to. I know what she means.

But I am also, for now at least, okay with this. Yes, I am tearful at some point every day. Yes, telling our four kids was one of the worst things we’ve ever had to do (so painful that Lisa did it as I couldn’t face it - what a rock she is!). Yes, I am at times literally shit-scared about surgery and the possibility of a stoma for some/all of the rest of my life - and other possible side effects that I’ll spare you for now (suffice to say, my Googling of all of this has been deliberately limited so far).

However, I also feel calm and galvanised. Alive even. Thankful to my body for keeping on niggling me that something was wrong. My trust in God has swelled - the death and resurrection themes of Easter that surrounded me immediately after my diagnosis feel bone-deep. And the support of my family, our many friends and my colleagues has been absolutely massive. I feel wrapped in a warm, supportive blanket of love and care.

So, I’ll leave it there, with a thank you to everyone for your kind words, sharing of family experiences of bowel cancer, offers of help, thoughts and prayers. You really do mean the world to us and I look forward to keeping you posted on my progress as this journey unfolds.