Jamie Cameron, Derby
I was diagnosed with stage 2 bowel cancer in July 2019, aged 48.
A few months prior to my diagnosis I went visit GP because I had an odd experience of being constipated and lower back ache. I was given Naproxen for back ache and Molaxole for the constipation. They worked, and after a few days things were working normally so thought no more of it.
During July I started feeling a little poorly. It was a Friday and in the morning I wasn’t too bad, but following a light lunch in the afternoon I felt tired and my stomach felt weird. It was making a very strange noises. I described symptoms to a local chemist and given over the counter irritable bowel syndrome (IBS) tablets. I had an early night.
The next day I felt much worse. I couldn’t eat or drink and I started to feel sick, and although I was heaving I wasn’t bringing anything up, except water, if I’d recently had some.
My wife took me to the local NHS walk in centre, and they diagnosed stomach acid and bad indigestion. They gave me some Gaviscon and anti-sickness tablets to help keep the Gaviscon down. Saturday night was a bad night, I struggled to sleep and kept heaving.
On Sunday I felt awful and really dehydrated, so my wife took me to A&E.
After going through the various triage stages, I saw a doctor who examined me and recommended an x-ray. This showed something but I needed a CT scan to be sure. Whilst waiting I started being sick, and what I was bringing up was clearly a cause for concern. I had a tube put down my throat via my nose to drain my stomach.
A consultant surgeon was called in, and I was told the CT scan showed a serious bowel blockage at the top of the descending part of the large bowel. I would need surgery that night – and off she went to scrub up! The surgeon said she felt the blockage was a tumour, and that would be confirmed in due course.
My wife was with me and she was very worried. It was such a blur. The gap between realising I was in a serious situation and then going for the operation, was quite short – maybe a couple of hours or so.
I had a laparotomy, part of my large bowel removed, and a stoma (ileostomy) formed. The surgeon called my wife and gave her the news that whilst it appeared to be a cancerous tumour, she felt they had got it all out. She described where it was and said I’d been fortunate to have it in that location. I think the panic level subsided a bit after that.
The first two to three days after surgery were tough, really tough. The following day, waking up with tubes all over me in a high dependency ward really brought it home. The main issue was I was producing lots and lots of bile. I had to stay on a drip to remain hydrated, as well as trying to take in water. It got so bad had to have the nasal drain tube (Nasogastric intubation) re-inserted and I was really unhappy at that point. I had an IV drip giving me fluids and a urinary catheter, nasogastric intubation, and ileostomy bag with drainage tube all allowing fluids to drain away. It was like something out the Matrix!
The situation turned around though, and I improved quickly from then on. Had a shower, shaved, was able to sit up in a chair. I started eating small light meals, but real food at last. Come the weekend I was mobile on my own and keen to get home. I’d lost over a stone in weight during my time in hospital.
The stoma took a while to get used to but it was a life saver, and yet such a shock to see and handle it. The stoma nurse was amazing though, and by the time I left hospital I was cool and had accepted it. It’s not as bad as you imagine it to be.
After I recovered from surgery, I started chemotherapy (xelox). It wasn’t pleasant. The peripheral neuropathy was the main side effect and it was awful. Some every day activities became a real challenge. I had four treatment cycles, and the side effects got progressively worse in each cycle. You can’t really understand it by having it described or explained to you.
I’m now just waiting to have my stoma reversed but this was meant to be earlier in the year but due to Covid-19 it has been delayed. However I’ve been told that I’m good to go, so hopefully I’ll be able to get a theatre slot quickly.
I think the biggest change is getting used to the ileostomy, but I’ve got used to it now. My outlook has changed a lot, in some ways I’ve had a close call. If I fell ill a week later I would’ve been on a ferry or in France. I did have to stop working but luckily I have sickness cover so didn’t have any financial worries.
My wife has coped amazingly well. For sure it’s been tough at times, and it dragged out as well. From falling ill to finishing chemo was about six months. It’s true what they say, it’s harder on the loved ones. There was bound to have been some ‘what if?’ moments.
I have a teenage daughter, she was worried about me and said it felt weird. I was fit and active, and it came out the blue, so that probably contributed to the weirdness feeling. During treatment she coped very well and she helped out. She would probably say I was milking it at times, getting her to bring me drinks and such like.
We are planning a couple of significant holidays over the next year or so, including Florida and New York, as well as returning to the place we wanted to go to in France. In hospital, probably to cheer me up and distract me, my wife and I discussed what I’d like to do. In the list was fly a helicopter. So I’ve recently had three helicopter flying lessons, and plan to continue.
But we’re leading change
Never Too Young is leading change for younger bowel cancer patients. Every year 2,500 younger people are diagnosed with bowel cancer in the UK. Our research has shown that younger bowel cancer patients have a very different experience of diagnosis, treatment and care.
What are we calling for?
Improved clinical guidance and practice on bowel cancer in younger people
Improved identification of people with genetic conditions and access to surveillance screening
Improved information for younger people on bowel cancer symptoms.