They told me I had IBS, but it turned out to be bowel cancer

In March 2020, Sarah Stevenson, 45, director of a talent advisory company, was told by her GP that the stomach pains she’d been having for months were due to IBS, but the reality was quite different. Sarah lives with her husband James and their daughter Luna, nine, in Hertfordshire. Here she explains why going through cancer has made her determined to make the most of every moment in life...

I’d never been seriously ill in my life, or had a day off work sick in a decade. Then, in March 2020, just as health services were shutting down with the first Covid lockdown, I was told I had bowel cancer. I was terrified.

It had all started nine months before then, when I started to get stomach cramps. One time I also had blood in my poo.

I was going back and forth to the doctor, getting told I had IBS, which I’d never had before. The doctor insisted it could strike out of nowhere, but I was unconvinced.

Then, suddenly, with no answers, everything was locked down. There were no face-to-face appointments. By now my stomach was very distended and I could see a strange rippling on the surface. By then, I was getting very scared.

One evening in February 2020, I came home early from a dinner with my parents and just cried. I had stomach pains and no appetite, which was so unlike me. I felt something was seriously wrong.

I asked for a scan but was told nobody was being scanned, due to lockdown. Eventually, I found a private doctor and thank God I did because the CT scan showed up a bowel blockage.

The doctor called me up on FaceTime.

"You’ve got a bowel blockage," he said.

"What could cause that?" I replied.

His face said it all. "Cancer," he told me.

The floor dropped out of my stomach.

When I came downstairs and told James, he was in disbelief. I couldn’t even look at my daughter Luna, who was five at the time. I was catatonic with fear.

I needed an emergency stent put in as there was a high risk of my bowel perforating, which could have killed me, but I was told any surgical procedures were likely to have to wait until after Covid, which was terrifying, as we had no idea how long it was going to last.

The not knowing if I was going to be seen was almost worse than finding out I had cancer.

Finally getting answers

In the end, a friend of a friend who is a colorectal surgeon, agreed to see me and did a colonoscopy. Nothing prepares you for hearing those words: "It’s definitely cancer."

Due to Covid, James couldn't come to the appointment with me, so I had to tell him the devastating news on FaceTime.

I was booked in the next day to have the operation to remove the tumour along with about a third of my large colon. I wasn’t allowed to go home due to the risk of my bowel perforating.

So, I had a harrowing 24 hours, trying to process the news alone. I just remember being in that hospital room and wailing.

The operation went well however, and the cancer hadn’t spread, so the outlook was very positive and I was expected to make a full recovery.

I had six months of tablet chemo with absolutely no side effects, so I was very lucky.

When I got the all-clear after the operation, I was elated and, like everyone else, just looking forward to getting on with my life once everything opened up again.

Shocking news

Then, at the six-month scan, I was told it had spread to my ovaries. I was blindsided as I’d had no symptoms and I was now officially stage four as it had spread from its original site.

When you hear ‘stage four’, people think you are going to die next week, but I learned there’s a big spectrum of stage four cancer and you can still be curable.

There is ‘resectable’ (operable) and non-resectable, and mine was thankfully the former.

"Don’t Google stage four bowel cancer," the oncologist said to me, which was wise as the statistics are dire. It’s something like a one-year survival prognosis for my type of cancer at stage four.

So, strictly, I shouldn’t be alive but apparently, for some people, this particular mutation is non-aggressive, and that seems to be the case for me.

In June 2021, I had a major operation to remove my ovaries, my uterus, the rest of my colon and then to have a brutal procedure called HIPEC, which was where my stomach was basically washed out with chemo to mop up any rogue cancer cells.

I was plunged into immediate menopause. I had my first hot flush in intensive care and mistook it for a fever initially – so that was actually a relief!

The operation was a real success. Some people never return to work after HIPEC (it’s known as the 'mother of all surgeries' for a reason) but I was out of hospital in two and a half weeks and have had no complications, probably because I was physically fit when I had the op.

Today, I am in remission. This means there is no detectable disease in my body. That doesn’t mean all my scans have been clear – for example, there were nodules found in my lungs last summer that had to be removed.

But in two years and nine months, since that recurrence in my ovaries, nothing major that couldn’t be sorted out with surgery has happened, so I have plenty of hope.

Lust for life

I’ve always had the urge to travel, but the stage four cancer diagnosis and Covid double whammy has made that desire even stronger.

I just want to consume the world and to show it to Luna too. I take the view that whilst I am well – and hopefully I will continue to be well – I should go for it, because I never know when I'll need another operation.

Since my diagnosis four years ago, we’ve been all over Europe, Morocco, Indonesia, Singapore and more.

I’ve always been a ‘maximiser’ and get incredibly frustrated with people who don't maximise their opportunities – especially now. I feel like my zest for life is now on steroids, but I hope that’s quite fun to be around.

As a family, including my 17-year old stepdaughter, Amber, we do meaningful stuff, things that will enrich our lives.

There’s definitely a lot more 'f*** it' moments too. More desire to take risks: I climbed mountains in the Lake District less than six months after my second major operation; I ski off piste, I’ve been paragliding and I basically live life to the full.

A positive attitude

One of the things I’ve maximised since my diagnosis is connection. They say that loneliness is toxic to the body and I believe that. That’s why I try to spend as much positive and meaningful time with people I love as possible, and say no to things and people that drain my energy. I think it’s as important as a good diet. It lowers cortisol and the stress hormones.

In terms of leading a healthy lifestyle, I'm big on nutrition – I do basic, sensible things like keep my blood sugar constant to reduce inflammation in the body. I also eat lots of cruciferous vegetables, like Pak choi, broccoli and cabbage, which are all anti-inflammatory.

I also meditate. For me, reducing stress and boosting immunity feel crucial in trying to prevent a recurrence. I try to remember that in everything I do.

Coping with uncertainty

Nobody’s future is guaranteed, but my future is maybe more uncertain than some and I’ve had to devise coping strategies.

I have to be scanned every three months, so there’s a cycle: the minute I get the date in the diary – about three weeks beforehand – there’s a ramping up of stress.

For the time in between however, I’ve learned to compartmentalise: I can’t think about cancer all the time or I’d go mad. So, I do all the things discussed to boost me and I also have a challenging job I love, which serves as a significant distraction. I do allow myself to be stressed, or have a good cry sometimes, though. It’s cathartic.

I’ve had a lot of trauma in my cancer journey, so there's stuff which I know is locked up in me and will probably need to come out. I have had some therapy but will probably have more. Therapy is important to provide a safe space where I can say things I don’t want to burden James with.

In some ways, it’s easier for the person who is going through the cancer, as if it’s happening to your body, you have some control. For your loved one, however, it can be even more traumatic I think.

They have to support you, but often have no outlet for their own feelings. This is why – whilst James has been my absolute rock – he’d consider therapy too.

Looking to the future

It’s so important to have hope with stage four cancer and whilst I still live from scan to scan, I also plan for the future.

The hope is that I am kept well long enough for the new immunotherapies and treatments they’re developing to become available.

We are on the verge of so many breakthroughs at the moment, particularly with bowel cancer.

The Covid vaccine actually sped up the bio-technology that’s going to make a cancer vaccine a reality sooner. So, I am quietly optimistic about the future whilst absolutely appreciating the present moment.

My mum was moaning about turning 70 recently and I had to tell her off! It’s a privilege to age. I am more aware of that than ever.