Liz Gray, Gateshead
I was diagnosed with stage 4 bowel cancer in August 2012, at just 31.
In January 2012, I was experiencing a lot of the classic bowel cancer symptoms: change in bowel habits, loss of energy, painful tummy aches and I lost of a lot of weight.
I went to the GP seven times. Unfortunately they were always locum doctors so I never saw the same person twice. As a young, healthy person with no family history I was told over and over again that it was irritable bowel syndrome (IBS). It was incredibly frustrating as I was so sure there was something very seriously wrong with me. I even raised with them the possibility of bowel cancer but was just told that it’s extremely unlikely.
Eventually I was referred for a colonoscopy. During the procedure the camera “hit” the tumor. It was really painful and it was impossible to get past it. It was also visible on the screen in front of me. In recovery I got told I would have to stay a bit longer than expected and was introduced to my nurse specialist. They said they had to check whether it was Crohn’s disease or bowel cancer, but it was fairly clear.
Weirdly, I was a bit relieved that they had found something because it meant they could do something, the pain would stop and I would get my energy back. The CT and MRI scans also implied that the cancer hadn’t spread, so it could be a relatively straight forward operation.
I had surgery where they removed the tumour in my bowel. However the cancer had spread so they also removed all my ovaries, fallopian tubes as well as small section of my kidney.
When I was recovering from the surgery they talked to me about freezing my eggs. However the success rates are really low, and it would have delayed the start of chemo and meant another procedure. It was always unclear what the final impact on having kids was, so I decided against it. It has been one of the most upsetting things about it all, and the aspect that has taken the longest to come to terms with. One of the best things was the extra bond that developed with my sister, especially when she said that she would donate eggs at any time to help me.
Around four months after surgery, I started my course of chemotherapy. It left me feeling nauseous, tired, super sensitive to the cold and feeling achy all over my body. It made my eye sight worse and there is such a thing as ‘chemo brain’, I felt cloudy. It made making decisions and any forms of stress very difficult to deal with.
Although the initial treatment was very unpleasant – it’s the aftermath that has the most long term impact. I’ve had long periods where my mental health has deteriorated. I’ve had to change careers, from a well-paid job to one that is much easier but has left me with financial worries. For a long time I was scared of getting ill and became a bit of hypochondriac. I couldn’t get travel insurances and I was scared of being too far away from a hospital. I became less brave and adventurous.
After treatment had finished I “discovered” rowing, which has been amazing. I didn’t want to go back to the sports that I did pre-cancer, but starting something new, with an amazing group of strong people, was perfect for me. Lining up for the first race, in a double with my best mate, was one of the scariest, but most fun things I have done – I still get the buzz getting into any rowing boat now.
I was thinking about doing an ironman challenge before getting ill, so that was definitely on the list, and completing it made me feel like I was stronger than cancer. I also managed to qualify for my age group for a standard distance triathlon to race as part of Team GB, so pulling on my personalised tri-suit felt pretty good.
I have always done quite a lot of fell running, but I am now mentally better (if still physically weaker) at longer, hillier muddy runs. And I am back into climbing, camping and watching the stars on a regular basis.
I start a new job in October 2020. For me that marks a complete recovery – taking back control of my life, making choices that are right for me, not dictated by the impact of cancer. I am looking forward to getting more excited about a career again, and using my brain again. I will still use the mental strength that I have gained – it has been a really valuable learning and has had more silver linings than I was expecting.
Since finishing treatment I’ve had to go back to hospital a few more times for colonoscopies, and have had polyps removed fairly regularly. I also had early stage cervical cancer, and due to scar tissues from the original operation I had to have a kidney removed three years ago. I didn’t have a specific moment being five years clear of the disease, but the last two colonoscopies were clear, and my nurse specialist and I agreed to stop monitoring. That was amazing, with a tinge of anxiety – there is something very reassuring about being checked a lot and the comfort blanket of the NHS.
I am excited about not thinking about cancer! It is no longer a major “thing” in my life, and it has taken a while for that to happen.
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