John Wilson, Coventry

I was diagnosed with Stage 4 bowel cancer aged 38 on 30 July 2020.

I’m a married father of two, married to an amazing wife Liz, and my beautiful children Henry and Rose. I’m so lucky to have such a great and supportive family.

My cancer journey started with finding blood in my stools and going to the toilet more frequently in April 2020. I had no other symptoms. This was during the start of the first COVID lockdown when I was adjusting to working from home with two small children. I put the symptoms mainly down to stress at the time. The word ‘cancer’ never entered my thoughts due to my general level of health and fitness, being 37 years old and having no family history of cancer.

Face-to-face GP appointments were hard to come by at this time due to the lockdown, but after several phone calls with my GP and an eventual face-to-face appointment I was prescribed various laxatives for a couple of months. I don’t think the word ‘cancer’ even entered the GP’s thoughts either! My symptoms continued before I started having stomach pains in June 2020, which led to my going to hospital and eventually having a flexi-sigmoidoscopy in July 2020.

I was diagnosed as having Stage 1 cancer initially, before it was confirmed I had stage 4 nine days later. My initial colonoscopy was aborted midway through when the camera couldn’t progress past the tumour they found in my lower bowel. A 10cm tumour was discovered. I then had a nine-day period of follow up scans which led to a consultation where I was told that approximately seventeen tumours had been found in my liver. The tumours were spread throughout all sections of my liver, so surgery was not possible. 

To say my diagnosis was a massive shock is an understatement. Whilst I never took my health for granted pre-cancer and was always grateful of it, I feel I’m now the ultimate example of not judging a book by its cover and that cancer can happen to anyone. This feeling of shock was further enhanced by the fact that my bowel consultant/surgeon – one of the most experienced colorectal experts in the Midlands – told me, prior to the colonoscopy, that he was ‘90% certain that we’ll find nothing sinister, but we’ll do the colonoscopy anyway just to check’. I’ve tried to forget those words, but I know I never will.

Surgery wasn’t possible initially, so I started palliative chemotherapy two weeks following my stage 4 diagnosis. During those two weeks I had minor surgery to have a drug port inserted in my upper chest. My chemotherapy regime involved four different drugs and typically lasted six or seven hours. I was then attached to a pump for 48 hours until this was disconnected. In the more than five years since, I’ve had this same chemo regime (with a few minor tweaks to change the cocktail of drugs) for over seventy different cycles.

The only extended chemo ‘breaks’ I’ve had are to have surgeries and radiotherapy. I’m lucky and grateful that the chemo worked initially for me to have a liver resection in March 2021, which was a massive procedure that involved 70% of my liver being removed. I’m very fortunate that the liver is the only organ that regenerates and partially grows back! This was followed up in June 2021 with a bowel resection to remove the primary tumour in my lower bowel. Unfortunately, after each surgery or radiotherapy treatment, I keep having tumour reoccurrence in my liver. My second liver resection was in September 2022, using the same incision as the first procedure. Cutting into the same scar tissue lines has caused an incisional hernia in my abdominal area. I’ve been dealing with this hernia now for three years. I’m currently unable to have it fixed (I can’t risk being off treatment for too long). It’s in such a bad state that I’m unable to exercise much. This has been extremely hard to deal with from a physical and mental point of view as I feel that exercise is so important. In addition to the above surgeries, I’ve also had ten separate radiotherapy treatments to my liver, five in July 2023 and five treatments in October 2024.

I’ve heard the phrase before that cancer takes everything from you. I feel this is well and truly the case for me. I have been pretty much destroyed physically, mentally, even financially to some extent and every other way possible. My brutal chemo regime has (for half of my cycles) involved either of the drugs panitumumab or cetuximab. This has had a huge physical and mental impact due to the damage that it does to your skin and appearance. I feel that even my memory has partially been taken from me due to the many rounds of chemo causing brain fog or ‘chemo brain’ as it’s known amongst many cancer patients. I’ve had such a relentless five plus years of non-stop chemo, surgery and radiotherapy that I almost can’t remember my life pre-cancer now. I’ve joked before that I can no longer use the phrase: “I know ‘XYZ’ like the back of my hand” anymore, because even the back of my hand has changed so much that I don’t recognise it!

I’m currently unable to have any further chemotherapy treatment. Further surgeries have been ruled out for now and any future radiotherapy treatment is very unlikely to happen, given the amount of damage my liver has taken. Since my stage 4 diagnosis almost five and a half years ago I’ve taken things one day at a time and I’ll continue to do this. I’m extremely lucky and grateful that I managed to respond to the chemo treatment for so long, as I’m well aware that this doesn’t always happen for many others in this situation.     

I’ve been very lucky to have such a great oncologist and medical team. The various nurses who have treated me for three years in hospital and over two years of home treatment have all been amazing. I’m very lucky to have had private medical care from my work and I honestly would not be here without it. My employers have been, and continue to be, very supportive, and the love and help from my family has been overwhelming. I certainly wouldn’t have been able to continue without my wife and children in particular, as well as the immense help we’ve had from my mum and from my mother-in-law. My wife has been an inspiration and an absolute rock to have alongside me from the first diagnosis to now. This situation is definitely harder for her than for me at times, so I’m constantly amazed at all her help and love I’ve had throughout.

Bowel Cancer UK has been a great source of information for me in terms of managing treatment and side effects and the best practices to lessen their impact. I’ve also been inspired and moved by reading the stories of many others going through similar experiences to myself and my family. It’s been an even more valuable source for my wife. She has been on the ‘Young people with bowel cancer’ forum since my initial diagnosis and it’s been a great information tool for picking up tips on how to manage side effects and to hear from the partners of bowel cancer patients experiencing the same thing. Liz made friends online with some other wives of husbands all in their 40s going through stage 4 bowel cancer. Several of us even managed to meet up in person one summer weekend which was a great and helpful experience for us and, I’m sure, for the other families too.

Prior to my diagnosis, I feel I would be the last person anyone would guess would have, or would get, stage 4 cancer. If it can happen to me, it could happen to anyone, so I encourage everyone to pay attention to their body and any unusual symptoms and to get checked out and seek medical appointments. Not only this, but to persevere again and again if resistance or doubt is met from your GP.

I’m so glad to see the work that Bowel Cancer UK is doing in raising awareness. It seems much more prominent now and awareness has certainly changed over the last five years since my diagnosis. If that awareness would have been around five or six years ago, I’d like to think it would have made a difference to me and my family.

Sadly, that’s too late for me now, but it gives me great hope and warmth that someone somewhere will notice that advert or campaign, have a think and act upon it. If it saves their life or helps to extends it, then what an incredible thing you’ve done collectively. Thank you.