My experience of being diagnosed and treated during the pandemic
Monday 4 April 2022
Clare Bryan was diagnosed with stage 3 bowel cancer in August 2021 aged 34.
I'd been experiencing some odd symptoms for a few months. I was extremely bloated, having irregular bowel movements and had noticed some blood when going to the toilet. We'd not long moved house, and with working full time and having two children, I just put it down to stress. My husband convinced me to contact my GP after the bleeding got worse. Tests found that my calprotectin levels were raised, an indication of inflammation in the bowel. After discussing this with my GP, we agreed that it was likely I had Inflammatory Bowel Disease (IBD) but a colonoscopy could confirm this.
In July 2021 I was referred for a flexible sigmoidoscopy, a 'mini' colonoscopy. The procedure had barely started before the endoscopist stopped and started asking me strange questions: 'Who do you live with?' 'Where's your husband?' That's when I really started to panic. The procedure ended abruptly after he explained he had taken some biopsies from my colon.
As soon as I was out of the procedure room, I contacted my husband and told him to get to the hospital. We were ushered into a tiny room and told that they had found a large tumour, it was likely cancerous and that I needed a CT scan to see if it had spread. Less than 48 hours later I was back in the hospital and in a CT scanner which thankfully showed no spread to other organs but inflamed lymph nodes. I also had a full colonoscopy to check my bowel for polyps; this came back clear.
In August 2021 I had surgery to remove my sigmoid colon and the surrounding lymph nodes; the tumour had grown out of my bowel wall and there were tumour deposits in my lymph nodes. My cancer was graded as T4, N1c, M0; a stage 3 cancer. The recovery from surgery was slow and due to the COVID restrictions no visitors were allowed so I was keen to leave the hospital and get home to my family as soon as I could, but in hindsight an extra few days in hospital would have been beneficial.
At 34, I felt nothing could be seriously wrong with me, cancer was something that happened to other people. You read about younger people having cancer but never in a million years did I think I would be affected. I would urge anyone, of any age, to get in touch with their GP if they have any symptoms. The earlier bowel cancer is found, the easier it is to treat.
I was referred for chemotherapy however there were long delays; the first appointment available was over 10 weeks post-op; meaning it would be difficult to start treatment within the recommended 12 weeks of surgery. After discussing this with my specialist nurse, she agreed to see if another hospital would be able to see me sooner, and I was subsequently referred to a different NHS Trust.
My oncologist recommended that I have eight cycles of CapOx chemotherapy and this started in October 2021; I struggled with side effects from the start and was reacting badly to the infusion element of my treatment. My immune system also suffered and I was hospitalised with COVID and treated for neutropenic sepsis. Once I'd recovered, we restarted treatment with a lower dose of the infusion and although this helped initially, I again became neutropenic and had to delay my treatment.
The infusion is given on a day ward; pre-covid you could take someone with you but that's all changed; you have to attend alone, you're socially distanced from other patients and you wear a mask for the duration of the treatment. Although all of the staff are fantastic, it can be a lonely place to be. My three weekly oncology appointments were also over the phone and I feel this impacted on my care; I was unable to show my oncologist any physical side effects and often the telephone conversations were short and felt impersonal.
Unfortunately my immune system continued to struggle and my oncologist took the decision to end my treatment early after five chemotherapy cycles, again this news was given to me over a short phone call. Initially I felt devastated, almost as if I'd failed somehow, but after speaking to my specialist nurse, I understood why the decision was made and I'm hoping that we have done enough to prevent any spread/recurrence. Luckily, I've had some very good friends and family who've kept me going during treatment and I will be forever grateful for their support.
At 34, I felt nothing could be seriously wrong with me, cancer was something that happened to other people. You read about younger people having cancer but never in a million years did I think I would be affected. I would urge anyone, of any age, to get in touch with their GP if they have any symptoms; the earlier bowel cancer is found, the easier it is to treat.
Read more real life stories of people affected by bowel cancer