Rob Jones, Merseyside
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I was diagnosed with stage 4 bowel cancer aged 58.
My symptoms began in early 2012 as a dull ache in my abdomen, between my belly button and pubic bone. I went to the GP and explained my symptoms and he was very supportive. At first, we thought it could be muscle strain caused by sailing. I then had scans on my kidneys which came back clear, and I was referred to a gastroenterologist next who felt it wasn't anything serious, but did qualify that by saying they couldn't be sure from an external examination, so referred me for a sigmoidoscopy to be sure.
My sigmoidoscopy took place on Halloween, or as I called it, 'trick or treat' day. My wife Sheila and I sat patiently in the waiting room, watching as people went in and then came out, summoning their partners to leave. Eventually it was my turn and as the procedure was being conducted, I could tell by the expressions on the nurse's faces that all wasn't well. At the end of the procedure, they asked me if my wife was with me, and they requested that she should be brought into the room with me before discussing the results, which told me there was definitely something wrong.
They took Sheila and me into a side room where they told us they were 95% sure I had bowel cancer. They asked if I wanted to be left in private to discuss this information. I responded that I wanted go home and crack on, and then in terms of next steps, I was told I'd receive a phone call the day after. The following day, we got the phone call from the colorectal nurse who informed us the scan, consultation and operation where all booked in for my treatment. When I questioned whether they were certain I had bowel cancer, she said, "They're certain!"
My symptoms began in early 2012 as a dull ache in my abdomen, between my belly button and pubic bone. I went to the GP and explained my symptoms and he was very supportive.
My thoughts about the day I was diagnosed was always what a terrible 'trick' to play on someone, but at least it was 'treatable' – this is a mixture of my humour and a play on words.
At the time of diagnosis, my then employer was magnificent in terms of support. I was at the stage of my career that I was scaling down work towards my 'second' and final retirement so I only worked two days a week. I was told me not to go back to work until I was completely well, either through surgery or subsequent chemotherapy. They paid me in full from that moment until the following September, when I took advantage of an offer from them and retired – again!
In terms of treatment, I had the tumour removed from my bowel in November 2012. No stoma bag was required, and this was followed by six sessions of chemotherapy. In June of the following year, I had five tumours removed from my liver resulting in 65% of my liver being removed, and this was then followed by another six sessions of chemotherapy. I had no real side effects apart from neuropathy in both feet, which I still have to date.
After the operation and treatment, things went pretty much as planned with three monthly, then six monthly scans and consultations. In August 2015 however my CEA blood count started to rise. Because of this, every three months I would have some form of scan, a blood test and a consultation. They would ask, "How are you Mr Jones?", and my standard reply would be, "Fine, unless you tell me different." This would usually be met with, "Well your scan shows nothing, but your CEA blood count is up again, so we'll see you again in three months." This continued and continued, and I even had a liver ablation in June 2019 because they saw something on a scan. In January 2022, my liver consultant told me that there were nodules in my lungs and that he was passing me over to oncology for chemotherapy.
When we met the oncologist, we were told she wasn't bothered about the small nodules, which were 2-3mm, but told us that cancer was back in my liver. I was also told that it was likely that I'd be on chemotherapy for the rest of my life and that she didn’t think chemotherapy would shrink it this time. I had eight sessions of chemotherapy and had a break whilst my family and I went to Kos on holiday. When we returned, I had a PET scan and was subsequently informed my liver was disease free and I was kept under scrutiny.
At the end of November, I had what was to be the first of two lung ablations to remove the nodules that had been there for a few years. During the process, I was warned that the lung could collapse, which unfortunately it did. I woke with a chest drain in and had to stay in hospital a few more days. Unfortunately, about a week later whilst at home, the lung collapsed again and I went into atrial fibrillation with a pulse rate of 150 bpm. In the early hours, my wife and I attended Aintree A&E where I was promptly dealt with and the chest drain re-inserted. I spent a further nine days in hospital and prior to my discharge, I had a CT scan. I didn't receive the results of this scan until February this year, when I was told it was back in my liver and this time I only had a 30% success rate of shrinkage. Seven more sessions of chemotherapy followed before I was told it wasn't working. As of June 2023, I'm hoping to go on oral medication that will give me a 10% chance of shrinkage.
After over 10 years of surgery, treatments, and constant scans and blood tests, living with bowel cancer has just become a 'way of life'. As sad as that may sound, my attitude towards life doesn't allow me to dwell on the negative side of things, but to move forward positively. Throughout the 10 – 11 years since diagnosis, I've tried to de-stigmatise the word 'cancer' through my humour and positivity, without being flippant towards the seriousness of the situation. By doing this, it's allowed people to talk more freely to me about my situation rather than talking about the 'big c'. I always refer to it as the 'little c', because it's neither big nor clever. I'm fine with everything, life is what it is, and we move on positively with a smile on our face. I anticipate life will get a bit sh*tty, but I'll deal with that as and when.
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