Beating bowel cancer together

David Nicholas, West Sussex

I was 46 when I was diagnosed with stage 3 bowel cancer in November 2010. It came out of the blue as I hadn’t noticed any particular issues with my bowels.

I had been pretty tired but had put this down to an incredibly intense few months at work. I’d also lost quite a lot of weight, almost three stone, but again I put this down to work and perhaps my vague attempts to lose weight finally working.

Less explicable was that people who hadn’t seen me for some time told me I was really pale. I was also having to catch my breath going up stairs and getting light-headed getting up from a chair.

But I wasn’t actually in pain, so hadn’t gone to the doctors. It was only when I went for my three-year health check-up provided by work that I found out that whilst I was mostly ok, I was massively and dangerously anaemic, with haemoglobin levels around a third of the level they should be.

It was made clear that ‘this is not normal’ and should be investigated as soon as possible. I had rarely seen my GP and had never been in hospital, but I was then fully on board a medical rollercoaster.

I was at my GP the next day and then to the hospital in Chichester for a gastroscopy and colonoscopy. They identified a large tumour – ‘probably cancer’ – high up in my colon.

To underline – I didn’t know the symptoms of bowel cancer but had never spotted anything. I must have been losing blood from that tumour but, maybe because it was so high in my colon, I had never seen any when I went to the loo. Or any other symptoms I thought should send me to the doctor.

With hindsight I remembered that I’d been rejected when trying to give blood a year or two earlier because my iron levels were too low. I’d just taken that as a sign that I should eat more spinach and red meat.

All I could think about was my wife Clare and Ellie my daughter and what could happen. And that really wasn’t easy to think about. Ten years later it still isn’t. I’m certain cancer impacts our loved ones just as much as those with the disease. Through all this, Clare and Ellie have been just fantastic – I know how lucky I am to have their love and support.

I should say that Clare has come with me to every medical appointment I’ve had. I cannot stress enough how useful it is to have two people hearing medical information. Sometimes you can be hit so hard by what you’ve been told that you just can’t take it in. Always take someone with you.

I then saw a brilliant gastrointestinal surgeon who said told me that yes, I had cancer, but then exactly what he was going to do about it. This was the first island of certainty and hope that something was going to be done.

I was going to lose the top half of my colon, but hopefully through keyholes – and he’d done it before. A CT scan confirmed the tumour but – with another hint of good news, that caused me to cry – didn’t spot any sign of spread to other organs.

Before I could have surgery, I had to have plasma transfusions and many iron tablets to get my blood fit for the operation. After a month, the haemoglobin levels were sufficiently high and my operation happened just before Christmas 2010. It was a success. It removed the tumour – “the size of a small aubergine” – and a range of lymph nodes. It was done successfully by keyholes, leaving a random collection of small scars and an odd-shaped belly button.

Recovery was almost straightforward except that my bowel went into ‘ileus’ for a week – it objected to being messed about and went on strike. This was a little complicated and unpleasant, but it eventually calmed down and once all were sure it was behaving itself once more, I was let home. I’d been in around 11 days.

The next step was chemotherapy. My surgeon told me he’d got everything that he could, but that chemo would be good to help mop up anything that might be lingering. Onto another, longer wavelength, medical routine with the oncologist. Another fantastic professional that made me feel I was in the right hands.

First of all, he told me how sorry he was to see me, and that I was so young (you don’t often get called young when you’re in your mid-40s). He told me that they’d found cancer in three of the 19 lymph nodes they’d taken out. Statistically this suggested there was a 30% risk of it returning within the next 10 years, but a course of chemotherapy would reduce that to 15%. That one in six chance hit me hard, but I’d take that improvement any day.

So then a six-month course of chemo – eight cycles of three weeks each. An infusion in hospital, then two weeks of tablets, then a week off, then start all over again. I don’t know if I was lucky, but it didn’t hit me too hard.

For a start I think this type – oxaliplatin – had milder side effects to many different types of chemo – no hair loss, no huge nausea. It made me tired and a few times gave me sore hands and arms around where the chemo had been infused.
The main effect though was sensitivity in hands and feet. As I was warned, they became hugely sensitive, particularly to cold, and then numb. While it’s mostly faded, ten years later my toes are still largely numb. A small cost.

In the end my chemo took longer than initially anticipated because they had to ensure it didn’t deplete my white blood cells too much. I had to pause a few times and finally finished in August 2011. And then was handed back to the care of my surgeon’s team for regular CT scans.

My work has been great through all of this. I’d initially gone back, very part time, about two months after my operation and I slowly built up my time over the next few months. With hindsight however, I think I should have done this more slowly.

I was then on a cycle of CT scans every six months for a while, and then onto once a year. After about three years they decided that a small shadow on one of my lungs seemed to be growing very slowly and needed further investigation.

After an MRI and some sort of nuclear scan (PET scan I think) they decided they should do a biopsy and take whatever it was out. So five years after the first operation I had another, on my lung. This also proved to be a cancer, but very small, very early, also slow-growing and not spread. They were confident they got it all but I’m now on another cycle of annual CT scans for around a decade to check that nothing reappears. So far nothing has.

I never thought I would have cancer. No-one in my family has had bowel cancer. And I didn’t have any symptoms that I would have associated with bowel cancer. But clearly, I wasn’t well and should have gone to the doctor sooner than I accidentally did. That would be my only advice. That, and take someone with you if you can.

In 2021 it will be over ten years since I was told I had cancer. One thing I am certain of is that every person’s experience with cancer is unique and my experience will definitely not be the same as theirs. Once you’ve been told something like that nothing ever looks quite the same again, and who knows what will happen in the future. But right now, I’m ok. I continue to look forward.

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