My Cancer Journey
I went to the GP because I thought the blood I had seen in the loo was due to serious piles. She did find piles, but sent me to a colorectal specialist who did a check and suggested a colonoscopy. During this procedure it was clear there was a large nasty looking polyp. The consultant said it was certainly cancer.
Other tests followed and a pre-operation assessment for a planned procedure to remove (resect) part of my lower colon, just around the join with the sigmoid colon. The surgery was to be in a month’s time, so I asked the surgeon if there was anything I could do in the meantime – he suggested I concentrated on getting fitter. So I did. Going to the gym, riding my exercise bike, long walks with the dog.
The original plan was keyhole or laparoscopic surgery, but once inside he found I had a fatty mesentery – fat around the visceral organs. He could not see clearly with the scope, so had to open me up.
As well as removing part of the colon tube, they also take the associated mesentery – the curtain of tissue that connects the colon to the back of the abdomen and carries the blood necessary blood supply, lymph system and nerves. 7 or the 21 lymph nodes removed had signs of cancer along with two blood vessels. This put my diagnosis as Stage 3C. This meant that it was highly likely that small cancer cells had escaped the area of the tumour. Too small to be seen on CT scans, but sufficient that they would cause secondary cancers if left unchecked. I would need chemotherapy in order to systemically kill all the cancer cells floating around and wherever they had settled.
My physical recovery from the operation was quite quick. A colon resection is a major operation, but my fitness training served me well. I was ready for chemotherapy in only 4 weeks. I was transferred from the Colorectal team to Oncology. They fitted a PICC line into my arm in order to simplify the infusions of FOLFOX.
The chemotherapy was delivered in 12 cycles at two-week intervals. One of my cycles was delayed due to low white blood cell count (neutropenia). Side-effects were slight to begin with, gradually making themselves felt over the months. Typically, I would feel tired in the four of five days after the infusion, then start to get out and about. My main exercise was walking. Walking the dogs or photography. In the second week we would search out cafés in interesting locations. I liked to spend as much time outdoors as possible.
This was all in 2015 and 2016. My drive for exercise was self-generated. It just felt the right thing to be doing. Of course today, there is a wealth of evidence that shows the benefit of exercise before, during and after treatment.
Side-effects are cumulative. I had some peripheral neuropathy. Tingling in the toes and fingers. It affected my voice and hearing. My hair did not fall out, but changed to fly-away hair from its original tough curliness. Nails became brittle, mouth ulcers and constipation were all minor irritations. Fatigue made it harder to get motivated to get out and about, but I persevered and usually felt much the better for it. I think the most challenging side-effect was the impact of the steroids causing sleeplessness. You would think that fatigue would make me sleep, but the steroids found me sooo tired, but wide-awake and ‘wired’ at 3am.
It was a relief when the last cycle was complete in May 2016. Summer was just getting underway and the fatigue slowly drained away, along with most of the side-effects. I enjoyed the warmth of the sun as I walked the Cotswold countryside with the dogs.
It took some months before I could undertake any work again. Yes, there was fatigue, but that was waning. I had brain fog. It was difficult to concentrate, and I had difficulty remembering things. This affected my self-confidence. Previously I had a long and various career which involved lots of International collaboration, public speaking and leadership. Now my self-confidence was gone. Would I ever chair meeting again? Could I run a school workshop?
It was 6 months later that I discovered Cancer Rehabilitation. This was a weekly class run by a fitness instructor and a cancer physiotherapist. This truly turned my life around. I had not realised that cancer and cancer treatment destroys muscle. The classes concentrated on rebuilding muscle and fitness generally. Mixing resistance and aerobic exercise. I enjoyed it and started going twice a week at different venues. Gradually my self-confidence returned.
However, it was still difficult coming to terms with the brain fog and memory. I was not able operate in the same way that I had done. I returned to workshops and speaking, but on a less hectic schedule. Not picking up where I left off but being choosier about the kind of assignment I would consider. My attention span for meetings was very short. I had previously had management and leadership roles that I relinquished during treatment, now I made it clear that I would not be seeking to retake those activities.
That isn’t to say that my earlier skills an experience were lost. I found a new outlet in helping to co-ordinate and organise the Cancer Rehabilitation classes. This activity came to the attention of the local health authority. They invited me to be a patient advocate. Part of the Public Patient Voice – enabling the patient perspective to be heard in the development and operation of the health trust. I also became an awareness speaker for Bowel Cancer UK.
It was around this time that my brother Damon was diagnosed with bowel cancer. I had advised all my brothers to get checked. Two were successful in getting colonoscopies. Polyps and a Stage 1 cancer were diagnosed. Damon, however had symptoms and visited the GP, he refused to refer him for investigation, saying he was too young. At 58 he was under the age for bowel cancer screening and therefor not at risk. A week before his 60th birthday (screening age) the GP relented. The diagnosis was advanced Stage 4 with peritoneal and serosal disease. He died 6 months later.
By now I understood more about the Public Patient Voice and realised that my own lived experience as a patient and as a brother would carry weight and perhaps I could make an impact so that tragedies like the death of my brother would not happen again.
I was recruited as Patient Advocate to the regional Cancer Alliance – able to be involved in the development of cancer services. My local health trust asked me if I could set up a bowel cancer support group for Gloucestershire. Plans were drawn, funding arranged, and meetings scheduled…
…then COVID appeared over the horizon. Staff were redeployed, meetings cancelled. I looked at what I could do in the meantime. COVID would not stop people getting cancer, and those people would still need support. They would not be able to meet face-2-face. So, an online support group was needed. One that was safe, ethical and supportive. Support, information and advice for people affected by cancer, by their peer, people who have been there before.
I set up a Facebook group, originally for Gloucestershire but then realised all of the UK would need it. This was 2 weeks before the first lockdown. Things were quiet. Colonoscopies were not happening. No-one was being diagnosed. After 3 months we only had 40 members. The suddenly it all took off, diagnoses were happening again and our membership rapidly grew. There was a peak during the post COVID catch-up, then it settled down to a steady growth.
Moderating the Facebook group and all its comments put me in a privileged position. I could see what people were experiencing across the country day-to-day. The issues, the challenges, the fears, the gaps, the support needs, the good outcomes and those that succumbed.
Access to these close-up details and seeing the BIG picture transformed my understanding of bowel cancer as it is experienced by the individual. I realised that I had a responsibility to reflect this in my work as a patient advocate.
I was invited to join two international organisations: Digestive Cancers Europe (DiCE) and Inspire 2 Live. Through these I became involved in research and policy development. My public speaking skills came back, enabling me to present the patient perspective at major international conferences and forums.
Organisations like DiCE and Independent Cancer Patient Voice (ICPV) provided high level patient advocacy training and development. They introduced me to researchers looking for patients to join their teams to ensure that the interventions they develop are relevant and workable for people with cancer.
Meanwhile, the online support group numbers grew steadily. I recruited and trained new moderators. Eventually becoming the charity Bowel Matters.
Cancer has had a dramatic impact on my life. The diagnosis traumatic, the loss of my brother was devastating. My career and plans for a higher degree came to a halt. I still have physical implications from the side-effects. On the other hand, I have a new purpose in my life. All those transferrable skills from my pre-cancer life are finding new avenues. I’m not studying for a higher degree, but I am fully engaged in research.
I am focusing my research work in two areas. Early detection – helping people to be diagnosed at an early stage. Minimal Residual Disease (MRD) – enabling people to have better monitoring and decision-making during their treatment. Both areas aimed at improving outcomes – higher survival rates and a reduction in impact of treatment.
A different life, but no less rewarding.