Gemma Savory, Staffordshire
I was diagnosed with stage three bowel cancer when I was 30 years old in 2014, three years later it has spread to my left lung. I’m now living with stage four bowel cancer but in remission.
I spent eight months going back and fourth to my GP. Early on I was referred to the hospital, but it got blocked by another GP. I had a lot of bleeding in between my periods, saw blood when I went to the toilet, excruciating back pain, stomach cramps, constipation, weight loss, fatigue and severe anaemia. When I was 20 years old, I was diagnosed with kidney disease so a lot of my symptoms were put down to this, but I was also told it could be endometriosis, take laxatives, just my hormones and that I was too young for it to be anything too serious.
I never mentioned cancer to my GP, I didn’t want to come across as a drama queen.
It was only when I was making weekly trips to the GP that they referred me for a colposcopy for the second time. The first colposcopy didn’t find anything, so I begged them to do it again and they found a lump in my vaginal wall – it was the tumour in my bowel that had broken through into it.
Mentally cancer is tough and I have so much anxiety around whether, or most likely when, I will need further treatment. Every scan is like a torture.
Once they determined it was bowel cancer, I was referred to another hospital and met my colorectal surgeon. The first thing they did was create a colostomy as they said it was make my treatment easier. About a month later, I started a five-week course of chemo-radiation, followed by APR surgery (abdominoperineal resection). I had a lot of reconstruction work on my rectum and my vaginal wall using my stomach muscles and skin.
Once I had recovered from this operation, I had 30 weekly sessions of chemo, which lasted for nine months. I was then told I was in remission.
However, just over a year later in May 2017, I had a routine CT scan and they found four tumours in my left lung. They told me I was incurable.
I had further a year of chemo and in July 2018 I underwent lung surgery to remove all the tumours, and now I’m back in remission. I’m now on ‘watch and wait’.
Life is tough. One of the major side effects from the first round of chemo was it depleted my already low kidney function. I had to start haemodialysis in order to have a stronger, second chemo treatment. Haemodialysis has changed my life completely as I’m now essentially kept alive by a machine three days a week. It rules my life.
My husband and I have trained to do the dialysis at home, in order to make my treatment slightly more flexible. This has involved learning to set up and troubleshoot the machine, put my own needles in, take bloods, learn sterile techniques and flush my chemo line. I basically have a hospital at home.
I never mentioned cancer to my GP, I didn’t want to come across as a drama queen.
Having cancer also means that I’m now ineligible for a transplant so I’m going to be on this dialysis for the rest of my life.
My physical appearance has changed since cancer treatment, I feel like a map of scars with a bag now. I get tired easily; have numbness in my hands and trip over my feet all the time from peripheral neuropathy. And let me tell you, chemo brain is a real thing – my memory is appalling.
Mentally cancer is tough and I have so much anxiety around whether, or most likely when, I will need further treatment. Every scan is like a torture.
My grandfather on my dad’s side died from bowel cancer when he was in his fifties – my dad was only 13 at the time. I didn’t mention my family history of bowel cancer until I saw my surgeon. They tested me for FAP and MAP, but it came back negative and so were the results for my dad and sister. I was put into the 1,000 genomes project as they suspect there is a family link but it’s just not yet known.
Going back to a normal full time job would be near impossible for me due to needing dialysis so I work freelance at home when I can.
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
