Tom Clifford, Bath
My story begins in February 2022 when at age 58, I went for a routine health-check provided by my employer.
As part of this medical, I was offered an at-home test that’s known as a FIT (faecal immunochemical test) to do, which I completed and returned. A few days later I received a call from the doctor who’d conducted my medical to say he needed to make an urgent referral to a colorectal surgeon to arrange a colonoscopy.
At no time between this medical and my previous health-check did I exhibit any symptoms of bowel cancer, with my previous FIT test coming back clear. This might have been because, as it turned out, I didn’t have a typical form of bowel cancer. During my colonoscopy, the cancer was found at the splenic flexture on the left side of my abdomen (where the colon makes its right-angled turn). The histology from tissue samples taken during my colonoscopy showed I had poorly differentiated signet ring cell cancer.
Because signet ring cell cancer doesn’t form tumours but spreads like a sheet, establishing the staging through imaging can be difficult and my care team debated whether to give me pre-op chemotherapy. In the end, the decision was to proceed with surgery, and follow with post-op chemotherapy. I didn’t receive confirmation of the staging until after I had a bowel resection in July 2022, at which point I was told I was stage 3.
My chemotherapy commenced five weeks after surgery. My original drug combination had to be changed very early on as I had a serious reaction to the tablet part of the combination. The replacement drug severely affected my bowel movements for the duration of my chemotherapy, and I lost around four stone in weight. I ultimately had six out of a planned eight cycles of chemotherapy, finishing on a single drug regime as I developed severe neuropathy in my fingers, which is now permanent.
For my seventh round of chemotherapy, my obs were all good. I was waiting for the cannula to be inserted when suddenly my right arm started to spasm. Over the course of the next 20 minutes or so, all four limbs started to have uncontrollable spasms and my blood pressure got so high that the machine could no longer read it. I was blue lighted to A&E and immediately given a head CT scan but this was all clear. It transpires this was the onset of functional neurological disorder (FND), more than likely caused by the stresses of the proceeding 10 months, for which I’m now receiving specialist psychologist input. FND causes non-epileptic seizures — I have no warning of their onset, don’t know how long they’ll last, or how many I may have in any given day. Needless to say, I’m no longer allowed to drive.
In the summer of 2023, I had my first anniversary colonoscopy and associated scans. The scans showed the cancer had spread to distant lymph nodes associated with my renal artery. The cancer is now incurable with plans for palliative chemotherapy to follow at the appropriate time. I am now just over six months into my ‘watch and wait’ regime and have had two scans. Following my last scan, radiotherapy was discussed but my MDT (multi-disciplinary team) couldn’t reach a consensus on its therapeutic value, so I've decided to continue with ‘watch and wait’ and see what my next PET scan shows.
I’ve always been a ‘glass half full’ person and have approached my cancer journey with positivity, whilst also recognising the reality of the situation. The support of my family and friends, cancer care team and employer have been critical to being able to maintain my positivity and living life as normally as possible. I’ve also benefited from wellbeing counselling, as well as specialist psychological support; despite being a bit skeptical at first, it really is good to talk!
Lastly, there was and is the power of sport. Whilst I can no longer play, I’m a community rugby coach and currently coach a university women’s rugby team and have continued in this role throughout my cancer journey. I’ve fed off the energy the team generates at training and in matches and they too have been an important part of keeping me positive. I’m pleased to say this year has been their best season yet and, with luck, I’ll get to see them through another season. I’m also a Peer Support Line volunteer for Bowel Cancer UK because I want to share my experiences in the hope they can help other patients in some way. What I get back is that supporting others who may be some way behind me on their cancer journey simply makes me feel good, which helps with my own wellbeing. For anyone who’s considering volunteering for this charity – I’d say do it! It will make you feel better about yourself, and you might find it therapeutic like I have.
- Find out more about volunteering
- Read more real life stories
- We're here to support you
