Gillian is a Trustee and Chair of the Board. Prior to her Bowel Cancer diagnosis Gillian was a Project and Process Change Manager within the Financial Services Industry, and officially retired in 2023. Gillian is a widow and has one daughter.
I received my first NHS Bowel Screening kit on my 50th birthday, which came back clear. Two years later another FIT test was sent in and on this occasion I received a letter back saying that traces of blood had been found in the sample (which may be nothing to be concerned about). Further investigation was suggested. At that time I felt physically fit and healthy and assumed it was likely to be a result of haemorrhoids, so I didn’t follow up at that time.
Several months later I noticed a slight change in bowel habits (I began to go more often) and very soon after that I spotted blood in my stools. I made an appointment with my GP who recommended a colonoscopy to investigate further. That was in spring 2017. A few weeks later, in mid-July, I went to the Western General Hospital in Edinburgh for the procedure, during which I saw a suspicious looking lesion on the monitor. The consultant (my colorectal surgeon) told me there and then that he was 95% sure it was a cancerous tumour. He took some tissue for biopsy testing. He also advised that it was very unlikely that my delay in following up the FIT test outcome had much bearing in my condition because bowel cancer typically grows slowly, over a period of several years. Afterward, he sat me down with my partner and explained what the next steps would be. These would include CT and MRI scans within the next couple of weeks and following that an MDT (Multidisciplinary Team) meeting would be held with other professionals to discuss the appropriate treatment plan (each plan is tailored to the patient, although there are generic processes to be followed).
At my next appointment with the surgeon he explained the findings from the scans and outcome of the MDT meeting. I had Stage 2/borderline Stage 3 rectal cancer (they couldn’t be 100% sure whether the cancer cells had breached the wall of the rectum). I met with my oncologist who explained that my treatment plan would include a 5 week course of pelvic Radiotherapy (daily sessions for 5 consecutive days over 5 weeks), together with daily oral chemotherapy tablets (Capecitabine). This would hopefully shrink the tumour and zap the cancer cells. During the first week I had some severe side effects from the chemo (including some breathing difficulties) resulting in a reduction in the dosage. This happened again in week 3 and again my dosage was reduced (my body doesn’t appear to tolerate Capecitabine). A further CT scan indicated a complete response to the radiotherapy as there was no sign of the tumour. The next step in the treatment plan was surgery, which they hoped would remove all the affected tissue and any cancer cells that may be lurking.
I went into hospital on 11 January 2018 for LAR (Low Anterior Resection) surgery and formation of a temporary stoma (to allow the joined up bowel to heal). Four days into recovery I began to feel very unwell, with a rising temperature and unable to keep any food down. Within a few hours my body was shaking uncontrollably and I felt freezing cold. I had a post op infection and had developed Sepsis. I was then hooked up to IV antibiotics, an oxygen mask and an NG (nasogastric) tube inserted – pumping out litres of nasty ‘gunk’. It took several days to stabilise and I spent a total of 18 days in hospital. I did receive some welcomed news shortly before going home – all the histology results came back clear. No cancer cells were found in the resected bowel tissue or lymph nodes.
Back home, recovery took a while. I was very weak due my depleted immune system and had lost around 10 kilograms and a lot of muscle mass. I found managing the stoma to be surprisingly easier than I had expected but it took a bit of getting used to. My surgeon and oncologist decided that it probably wasn’t in my best interests to have any adjuvant chemotherapy, especially since I’d had a bad reaction to it earlier and also because all my test results were clear. I was given 10 months to regain my strength before having the stoma reversal surgery. I would love to say that everything was fine afterwards and I returned to my pre cancer lifestyle, however, that was not the case.
Life before cancer was busy and mostly enjoyable. I say mostly because I had a very demanding and often stressful job as a contract Project and Process Change Manager in the Financial Services industry. I also did voluntary work as a panel member within the Scottish Children’s Hearings system. After my diagnosis I ended my work contract as it wasn’t going to be possible to maintain the workload throughout my treatment. I took a few months break from the voluntary work and resumed in July 2018 through to the end of my tenure, a year later.
My day to day life has been significantly impacted following my cancer treatment. I suffer from fatigue on a regular basis along with the after effects of the surgery and radiotherapy. These conditions are called LARS (Low Anterior Resection Syndrome) and PRD (Pelvic Radiation Disease). There is some crossover in the symptoms. With LARS it’s mainly a struggle to regain and control a regular bowel routine. This is exacerbated by issues with certain foods (interestingly it tends to be healthy foods that are the biggest culprits). Having very little rectum left often results in several visits to the toilet each day and the urgency is also problematic. I manage it through a combination of medication (Loperamide) and keeping a food diary. Time out of the house requires advanced planning, whether it’s a trip to the local shop for half an hour or a holiday for several days. Knowing where the nearest accessible toilets are located is essential. Having an emergency supply of Loperamide is also a must. It’s an unpredictable condition so the likelihood of an urgent need to go can happen at any time. In addition, the effects of pelvic radiotherapy also contribute to these issues, and the damage caused to muscle, nerves and blood vessels has an additional negative effect. Lower back pain is the latest issue I have to contend with, particularly impacting the length of time I can stand and also walk. Late effects of radiotherapy can appear years after treatment so I may yet experience more.
While I’m relieved to remain cancer free after 7 years I have had to adopt a change of lifestyle since my diagnosis. Sadly, I also lost my partner in November 2022 and then decided to take early retirement in 2023.
I discovered the Bowel Cancer Support Group UK on Facebook in early 2021 (During the Coronavirus restriction period) and began to immerse myself in the support community. I was soon asked to join the admin team and then the management team shortly after that. The creation of the Bowel Matters Charity has, and will enable our group to continue the valuable support to anyone in the UK affected by bowel cancer, through our lived experiences. It also opens up opportunities to collaborate with other organisations under an officially recognised status.