Matthew Deeny, Hertfordshire
I was diagnosed with stage 3 bowel cancer in December 2022, aged 39.
I had a nice, easy, happy life until July 2022 when my mum was diagnosed with pancreatic cancer and admitted to a hospice, she died the following month with me, my dad, sister and cousin by her side. During this time my dad had been having treatment for liver cancer, he struggled without my mum and went into hospital a few months later and also passed away.
In between my mum and dad passing away I noticed I was getting a stomach pain pretty much immediately after eating anything, I then didn’t feel like I was going to the toilet properly and went to the doctors who assured me it was IBS (irritable bowel syndrome) from stress.
The tablets they gave me didn’t help and now my stools became narrow with black specs. I persisted with a few trips to the doctors as I knew something wasn’t right and every time I looked up my symptoms they all seemed to point towards bowel cancer.
Eventually they arranged for me to have a FIT test which triggered a referral or a colonoscopy. Everyone reassured me if would just be a polyp or something because of my age and I had nothing to worry about, even the nurse that admitted me said it would probably just be that and looked quite shocked when I told her after what they had found.
During the colonoscopy the surgeon showed me the screen and said he had enough experience to be able to tell me it was cancer and was quite large and had been there quite a while.
My wife was called in, a nurse looked after my daughters, and we went into a room with the surgeon and met one of my cancer nurses for the first time. I thought I would feel shock or worry but I didn’t really feel anything, I think it was more of a relief to find out what it was and now I knew something could be done about it.
I just asked if they could remove it and he said that hopefully they will be able to. Panic didn’t really settle in until I was told I would need a CT scan to see if it had spread anywhere else, I hadn’t thought of this. This was the worst wait; I convinced myself it was in my lungs and noticed every tiny little ache or pain but one of my consultants rang me one evening as he knew I was very worried to tell me it hadn’t spread. This was a huge relief, and I felt I could now deal with whatever needed to be done. I then met my surgeon who put my mind at ease that we would be able to get rid of this and get back to normal.
A week later I went in for keyhole robotic surgery which was converted to open surgery as my anatomy was abnormal, which I think was a bit of a headache for the surgeon. After a week in hospital, I was able to attend my Dad’s funeral and after a few return trips to the hospital due to Ileus and blockages I started chemotherapy as the cancer had spread to some lymph nodes. This was quite hard and the side effects like sensitivity to cold, fatigue and pains in my feet weren’t very nice but I was just grateful to be getting treated and some of the people in the chemo centre looked a lot worse than me so I couldn’t complain.
Three months later things were going well and we went on holiday, when we there I suddenly noticed my stools looked flat and when got back home I was referred for a colonoscopy, which showed something but they weren’t sure if it was scar tissue so I had a CT scan.
When the phone rang on the Friday to come into the hospital on the Monday, I knew straight away what this meant and rang my cancer nurse who confirmed it was cancer again and reassured me they would again do everything they could.
The doctors said it was quite aggressive as it had grown so quickly and I met a new surgeon on the same team who arranged for me to have my large colon and rectum removed because if he just removed the cancer and part of my bowel again, it would probably come back again. I had another CT scan to check for spread and it hadn’t, which again was a massive relief.
A few weeks later I had the operation. I had been told I would have a stoma bag, but I hadn’t asked about or looked into the operation or stoma bags and told my doctors and nurses I didn’t really want to know anything about it. I thought I’d see what it’s all about when I wake up and work it out then, which for me made it easier. When I woke up, I was having a blood transfusion and had a stoma bag which was quite interesting. I really wasn’t bothered by it and still aren’t, it saved my life.
The only thing that was a bit unexpected was I had pictured my bum hole just sort of being sewn shut, I didn’t realise from top to bottom of my rear would be removed and sewn up, that was quite sore and it took a while to be able to sit down comfortably.
Once I left the hospital it took a good few months to get back to any sort of normality and I had quite a few trips back to the hospital with infections and blockages. My last one was two months ago, but I know what the signs are now and can get to the hospital straight away to get admitted and treated.
I’m having CT surveillance scans every six months and blood tests and regular meetings with doctors. I am struggling with fatigue and find it hard to make it through the day without some sleep. I also need to keep hydrated with isotonic drinks and supplements as I get very dehydrated very easily which I was warned about as it is part of having an ileostomy.
After a lot of tests because of my age and what had happened to my parents it turned out the cancer was because of some dodgy genes I have, they call it Lynch-like syndrome and unfortunately, they don’t know very much about my particular ones so at the moment I just have to wait and hope they find out a bit more about them in the next few years. It’s a bit of a worry but at least it’s been identified.
The fatigue and not being able to do simple tasks that I could before my stoma, like lifting and DIY, can be a bit of a struggle and frustrating. But I'm just happy and very grateful to have been able to have the treatment and support that I’ve had, and to still be here with my family, which outweighs any physical problems I’ve been left with.
My family and friends were brilliant and couldn’t do enough for me. Some of my friends and friends of my parents became family and I never felt alone. My wife was very strong, in front of me anyways, I always thought the whole thing must be a lot worse for her than me, I just needed to lie in hospital or bed most of the time while she looked after and nursed me and cared for the children. She has been amazing though and I don’t know how she stayed so strong for us, but she made me stronger.
If something doesn’t feel right, persist and push for the tests you think you need, you know your body and if something isn’t right. No matter what life throws at you try and keep positive, try not to let it get you down. You are stronger than you probably realise when it comes down to it.
