"In my practice, I see patients all the time who ignore symptoms and put off seeing their GP." Photo / National Cancer Institute, Unsplash
OPINION:
At the age of 39, I was not expecting cancer. As a GP married to a consultant gastroenterologist who, at the time, was one of the regional leads for the UK’s National Bowel Cancer Screening Programme, I knew my age meant my risk was low. I was young, fit and healthy and had just run an 8-kilometre assault course the previous weekend. And apart from my IBS-like symptoms, I was well. In my practice, I see patients all the time who ignore symptoms and put off seeing their GP.
“Why didn’t you come sooner?” I want to ask. Yet I could ask myself the same question. When you put the events of 2018 together and step back, it seems obvious. My symptoms – fatigue, bleeding and tummy trouble – were textbook. But when you’re living it, juggling countless things as a busy mum, you can take your health for granted.
In general, I think doctors often don’t take care of their own health. In January of that year, I began to feel quite tired. But I had just taken on more responsibility at work as a GP partner, I had two young children then aged six and seven, and felt like I’d just got my social life back. I made a GP appointment and had blood tests, which showed everything was fine. So I put it out of my mind. Two months later, I started feeling a little constipated.
But I had a medical explanation ready. I know that irritable bowel syndrome can come on when you’re stressed. Then there was blood on the toilet paper, which I’d had with piles post-childbirth, so I didn’t think anything of it. Again, I explained it away; bowel cancer was so unlikely. But in July, the blood became more noticeable in the toilet.
I spoke to a friend, and she said, “Have you heard of Deborah James?” I had. She had been diagnosed with bowel cancer two years earlier, aged 35. But I still didn’t feel like it could happen to me.
My husband thought I could have inflammatory bowel disease or colitis and it needed to be investigated. I went back to the GP, who examined me and agreed that it was probably nothing. I left with treatment for constipation and piles and, for a while, things improved. As summer wore on, I started urgently needing the toilet. I had stomach pain and blood in my poo. On holiday in Italy, I was eating carbohydrates at every meal but losing weight, which I only realise now looking back at pictures. I felt exhausted, but I put that down to the heat. By the last couple of days, I knew there was something wrong.
But again, I still reasoned that it was more likely to be inflammatory bowel disease, given my age. I went straight to the GP on my return. Blood tests showed I was anaemic, and I was booked in for further tests. In the 10 days I waited for a colonoscopy, I had abdominal pain so severe that I nearly called an ambulance. I also had a persistent feeling of not having fully emptied my bowels when I went to the loo. My poo had also changed shape. Not enough people talk about that symptom – it came out long and thin, like a ribbon. On that day of the colonoscopy I wasn’t worried, strangely. I thought about it in a very clinical way. But from the moment the surgeon inserted the camera, the room went eerily quiet.
“It’s nasty,” the doctor said. Half-sedated, I could see a dark, bloody mass on the screen being tugged apart by the biopsy forceps. Phone calls were being made to my husband and to the cancer specialist nurse. There was a four-day wait to find out if it had spread to my spine. I’d been suffering with back pain and sciatica, too, which could have meant the cancer was aggressive and had spread. The statistic I’d been told in medical school 20 years ago – that I had a 50 per cent chance of surviving five years with Stage 3 bowel cancer – was ringing in my ears.
Neither I nor my husband slept – we were just tossing and turning. After an MRI, I was diagnosed with Stage 3 bowel cancer that was locally advanced but thankfully hadn’t spread to other organs. I cried, then felt oddly pragmatic. I don’t think I had been burying my head in the sand; I just always had a plausible explanation for my symptoms. I was brought up seldom eating red meat, I exercised several times a week and I’m a non-smoker with no family history of bowel cancer. I’m proof that cancer really doesn’t discriminate.
My poor husband, Gareth, had to tell everyone, while I flitted from shock and denial to grief. The word “cancer” is like a fear grenade and there were plenty of times after my diagnosis that people turned up on the doorstep in tears. When we told the children, it didn’t seem to really register. I insisted we go to my brother-in-law’s birthday dinner as I wanted things to be as normal as possible. When we arrived, my daughter blurted out, “Mummy’s got cancer!” in a crowded restaurant.
That made people feel awkward, but I didn’t care: it was the truth. It goes without saying that surgery was painful and four cycles of chemotherapy was a long, hard slog. It’s that feeling of your plug being pulled out of a socket: you feel sick, not yourself, you don’t want to eat and drink. The nerve pain meant I couldn’t tolerate any cold: if we went out, I’d be wrapped in a hat, hood, ski gloves and furry boots with a scarf wrapped round my face. But the hardest work was yet to come. My treatment was successful and I was given the all-clear in March 2019.
But adjusting to life post-cancer felt almost impossible. I know my privilege – I’m in a cancer community where a lot of people aren’t going to survive, yet here I am moaning about being a survivor. But going through treatment, I wasn’t the carer in my household any more. I wasn’t a doctor. I wasn’t a wife. At times, I felt like I wasn’t even a mother. And so I struggled to integrate back into everyday life. I felt lost and alone; a couple of my major relationships disintegrated. I was looking at the world through new glasses, but I didn’t know how to wear them.
I felt like I didn’t fit. I felt angry that cancer still had me in a vice, and I no longer had a life I recognised. Part of the reason I’ve written a book is that I didn’t know it was OK to feel how I did – I just felt like I was failing, and asked myself why I couldn’t snap out of it. As a GP, a third of my workload involves managing mental health issues, but I didn’t recognise the symptoms of PTSD in myself. Three months after being given the all-clear, I wanted to go back to work, but the people around me could see I was fragile.
I started back part-time and one of the first letters I received was about someone who had the exact operation I did but their cancer had returned. I thought: “How can I do this job?” The constant triggers at work just caused my mental health to spiral further. Trauma-based CBT helped, but I still find cancer-heavy days at work incredibly difficult. Raising awareness of bowel cancer and other “taboo” health issues through Instagram has kept me going.
No one wants to talk about bowel cancer, but it’s the second-biggest cancer killer. It’s taboo in certain ethnic communities. Men are a lot less likely to take up bowel screening than women. And it does affect young people. If I ask a patient about their poo habits, they’re often embarrassed and give one-word answers. I thought: “I could make noise about this. We can turn this negative into a positive.”
Writing about it became my catharsis, throughout treatment and beyond. I’m lucky to have a platform, and I hope I can equip people to seek help early. But being in the cancer community on Instagram can be relentless – you may not have met someone in real life, but you have a real connection to them. So when we lose people, you feel the loss immensely.
I hope Deborah would be proud of what we’re doing; I’m grateful to be in touch with her mum and to have her blessing. Seeing the impact it can have makes all the difference. When I get a message to say that “because of you, I went to get checked”, that’s everything. That’s all I wanted.
- As told to Abigail Buchanan
1. Bleeding from your bottom and/or blood in your poo
2. A persistent and unexplained change in bowel habit
3. Unexplained weight loss
4. Extreme tiredness for no obvious reason
5. A pain or lump in your tummy
It’s important to know that most people with these symptoms don’t have bowel cancer; other health problems can cause similar symptoms. But if you have any of these, or just don’t feel right, see your GP.
And dad Clarke Gayford may have delivered his best birthday cake yet.