Sam Rose, Northampton
I was diagnosed with bowel cancer when I was 22 years old back in 2010. I recall one evening in January that year when I was bleeding all night.
I saw my GP and after examining me she said she didn’t know what the cause could be and sent me to hospital instead.
I went to A&E and one of the consultants told me I needed an operation to have a polyp cut out and examined.
In April, I underwent a procedure known as laparoscopic surgery. It’s a process that involved surgeons examining my pelvis and the inside of my abdomen.
When the results came back I was told there were cancerous cells inside the polyp. When they told me the news I was stunned! I didn’t think it could be cancer. My parents and I actually believed it might be piles as I’d been bleeding while going to the toilet for a few months.
A colonoscopy I had later showed there were more cancerous cells in my body. I was told I should have my colon taken out, so I had most of it removed in August and then an internal pouch created and a colostomy reversal in January 2011.
It’s been nearly a decade since then and my life has changed massively. I went from being totally healthy and never even having as much as a broken bone, to racking up experience with so many different medical tests, hospital treatments and visits.
After having bowel cancer, I had a really good quality of life, and I still do. Having the internal pouch has been brilliant for me and it has worked very well so far.
However, having Lynch syndrome means I have to have regular check-ups – a flexible sigmoidoscopy, a gastroscopy, and for a few years, a CT scan, all annually. The tests give me horrible anxiety every time, and I’ve had a couple of scares along the way.
In the eight years that followed my bowel cancer, I struggled with health anxiety and grief from what had happened to me, and a fear of the future. The emotional struggle is real, and I think it’s often overlooked.
I said that’s what life was like in the eight years after bowel cancer. Since then I had two other cancers – uterine and duodenal, both in 2018. I had a hysterectomy for the uterine cancer, which means my partner and I will never be able to have biological children.
I then had Whipple surgery for the duodenal cancer just three months after the hysterectomy. This was picked up during an annual gastroscopy, and the uterine cancer was discovered when I went for an MRI after complaining of a recurring abscess.
The gynaecologist wouldn’t have worried about the MRI results if it wasn’t for my Lynch syndrome, but instead he pushed for a hysteroscopy.
If it wasn’t for the genetic testing, both cancers could have been picked up a lot later. Instead both were diagnosed early and I’m doing well, physically at least. I feel like on the emotional side of things it’s a little early to tell, but I’m doing okay so far.
I have always been a writer and I use writing to deal with my cancer experiences. I think having cancer has made me more grateful for my life and given me a different perspective. People say don’t let cancer change you, but it has changed me, and I am fine with that.
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