Clare Filer, Bristol
I was 50 when I was diagnosed with stage 2 bowel cancer in September 2022.
I worked in retail management for over 30 years until 2021, when I was made redundant, and decided to become self-employed. I launched my driving and companionship service in October 2021. A year later I was diagnosed with bowel cancer.
I had a history of haemorrhoids since having my children, and I had experienced occasional bleeding from my rectum which I always put down to piles. I used over the counter treatment, which usually helped settle the problem.
At the start of 2021 I noticed a change in my bowel habits and the appearance of my stools. I had diarrhoea regularly and often needed to go to the toilet quite urgently. My stools started to be covered in a dark red blood/mucus and I started to worry that there could be a bigger problem than just piles.
I kept looking up symptoms of bowel cancer, and convinced myself for a while that it couldn’t be that as I hadn’t lost any weight, I didn’t have any abdominal pain and the bloody mucus appeared on the stools, not in it. I started to feel very tired and anxious, so in July of that year I went to see my doctor.
She was very understanding, she did an internal examination and asked me to do a FIT test. This came back as positive, so I was referred for a colonoscopy, which was at the end of August. I knew straight after my colonoscopy that something was not right as the endoscopist would only discuss the results with me once my husband had arrived. I was told that an 8mm polyp had been found and that three biopsies had been taken.
Within a week I received a phone call from a colorectal nurse asking me to have a CT scan, followed by an MRI. I was then asked to attend an appointment at Southmead hospital with a consultant colorectal surgeon. On 28th September 2022 I was told by the consultant that the biopsies had come back as adenocarcinoma, and my scans had identified it as stage 2.
The consultant explained to me that as the tumour was so low in my rectum, they would have to completely remove my anus and rectum to ensure the entire tumour was extracted – this was called extralevator abdominoperineal resection (ELAPE surgery) and that I would be left with a permanent stoma.
I wasn’t shocked to hear I had cancer, I knew deep down that something was seriously wrong, and had been for a long time, but I was shocked to hear of the extent of the surgery I needed and that I would be left with a permanent stoma.
In a way it was a relief to get a diagnosis and know what I was dealing with, but I knew it was a very serious operation which had many risks, and I was frightened.
The worst thing was the thought of having to tell my children that I had cancer. My daughter had just started her master’s at Cambridge and I was worried that she would want to come home once she heard the news. My son was still living at home doing his A levels, and again, I didn’t want my illness to impact his studies. When I did tell them, they coped with it better than I had anticipated and wanted to be involved at every stage, so they knew what was happening. They continued with their studies, as long as I promised to tell them everything as it evolved.
I had my ELAPE surgery on 24 October 2022, just three months after I had been to my GP to tell her of my symptoms. The surgery lasted eight hours and was done using robotic technology, which minimised my scarring. I was in hospital for a week following surgery, until my drains had been removed and I felt I could manage my stoma independently. During surgery several of my lymph nodes were removed and sent for biopsy to see if there were any cancer cells present.
On 22 November I had the post-operative appointment with my surgeon and was told that three out of 22 of my lymph nodes tested positive for cancer so I was advised to have a course of adjuvant chemotherapy to reduce the risk of reoccurrence and improve my chance of cure. My chemo was to be a combination of Oxaliplatin and Capecitabine and I was transferred to the oncology team. I had four rounds of chemo, my first was on 21 December 2022.
I had been told that I could experience several side-effects, and within a couple of days I had most of them, including nausea, diarrhoea, chronic fatigue and, the worst for me, peripheral neuropathy – where any contact with the cold caused pain, this included breathing in cold air, eating, drinking or touching anything cold.
I found the first two weeks following infusion to be the worst, the third week I started to feel slightly more normal, but after the third week, I had to have another round. After round three, I had my biggest low and told my husband that I wasn’t going to have any more as I couldn’t bear the side effects, luckily both he and my children managed to talk me round and I completed my course.
It is now three years since I finished chemotherapy and three and half years since my surgery. I had another coloscopy and CT scan after a year, which showed no signs of cancer, and have had six monthly CER blood tests, which have remained stable. This Autumn (2026) I will have another colonoscopy, and if that is clear I will have a colonoscopy every five years.
I have adapted to living with a permanent stoma (and a sewn up bottom), it doesn’t really stop me eating or drinking what I like, or doing what I always did. I do have to be more careful of lifting and pushing heavy weights as I am at higher risk of parastomal hernia, I also find it uncomfortable if I am sat on firm surfaces for long periods of time. These are small things to live with, and I consider myself very lucky to be cancer free up until this point.
Reoccurrence will always be at the back of my mind, but I have learned to live life to the full, whilst I can!
I will always be grateful to all the NHS staff who I encountered, from symptoms, to diagnosis, to aftercare, they have all been amazing, and I know I can call up my stoma or colorectal nurse if ever I am worried about anything.
I am quite a private person and my way of coping whilst I was being treated was to only share what was happening with my closest family and friends. It was only when my treatment was complete that I felt ready to tell more people of my experience.
Unfortunately, as I was a year into self-employment, and was a sole trader, I was not entitled to any sort of sick pay (ironic as I had worked 30 years as an employee and never been ill!). I did worry about money and found it tricky to discover if I was entitled to any sort of benefits, having never claimed benefits before. I did find out that I could claim ESA (Employment and Support Allowance), which helped, but I did start working again six weeks after my surgery, and continued working whilst having chemotherapy as I didn’t want my new business to fail. It was hard.
I would encourage anybody experiencing any symptoms which could potentially lead to a bowel cancer diagnosis to talk to their GP, particularly if you have blood in or on your poo.
Never be embarrassed to let medical professionals examine you (I’ve lost count of the number of people that I’ve showed my bottom to!), they’ve seen it all before and it could just save your life.
Trust in our NHS, I couldn’t have asked for any better care, and I will always be in debt to all the wonderful staff I encountered.
