Matthew Wiltshire, Surrey
I'm 51, married with two boys of 21 and 17. My entire world changed in April 2015 when, following a colonoscopy, I was told I had a cancerous tumour in my colon. I'd had no symptoms other than a few dodgy looking poos that left me with slightly redder tissue than normal – I just figured I'd been eating too much steak and drinking too much red wine. However, it was enough to send me to my GP who didn't suspect anything sinister but thought it wise to check anyway. I was in the operating theatre three weeks later and after a successful surgical procedure to remove the tumour, I was sent home to continue my life – without radiotherapy or chemotherapy.
There's no doubt that the time I spent in hospital was the worst I'd endured in my life. I ended up being fed through a drip in my neck for a week. I was also given an ileostomy for three months. I managed fairly well, learning to sit the wrong way on the toilet, eating very carefully to avoid blockages, and adjusting my golf swing on a family holiday in Portugal. The stoma was reversed, my bowel reconnected, tummy stitched up, and I was sent home to continue my life.
I celebrated my one year all clear anniversary on 6 August 2016. Not long after that something seemed to change. I started to have an unpleasant feeling in my bottom which became quite painful. I reported to my surgeon who hoped it was scar tissue, but following numerous scans revealed that the cancer had returned – this time in the pelvic region.
My oncologist put me on six weeks of daily radiotherapy with tablet form chemo plus weekly intravenous chemo. After two weeks the radiotherapy side effects kicked in. That ended just before Christmas 2016 and as we headed into 2017 the scan showed positive results and it was looking like I would need surgery. At this point, I looked around for the best surgeon I could find. I found him and he insisted on rescanning me. His machines managed to pick up some "suspicious" looking nodules in my lungs, which were cancerous.
Relationships inevitably change. Roles change. I’ve gone from being the provider, supporter, advisor, carer, to almost the opposite.
This meant I now had advanced bowel cancer as the cancer had spread.
In May 2017 I met with my new oncologist who decided chemotherapy was the way forward. Twelve cycles every fortnight with a small break in the middle. The good news was that I was "RAS wild" – it meant I could also take some targeted therapy that attacked the cancer's blood supply. The scans I had in July 2017 showed that I was responding to the chemo then my next scan in November that year revealed that virtually everything had disappeared. The only thing that came out of the blue was that I had a pulmonary embolism. So, I was straight into hospital where I was given a bunch of injections and handed a box full of syringes, so I could self-inject a blood thinner every day for six months.
After a scan in February last year and whilst I was waiting to get the results in March, I managed to get an appointment to see the radiologist. We had met him previously and he was very professional but when we met him on this day it was different. I now know why the oncologist should give scan news. I walked out of there with one thing going around in my head – "go home and get your affairs in order". I'd gone from cured to incurable in fifteen minutes. The cancer in the lungs was back. My oncologist called the next day, same prognosis, slightly better delivery. "It's not months, it's years".
I can't speak for everyone, but I tried to keep busy, read, trying to generate some form of positivity. I created a plan, set some goals, and I just found some comfort in doing what have done in my entire working life. It was at this point I found The Mulberry Centre. They were unbelievable, picking me up off the floor and showing me the first steps on the journey of coping.
Chemo started again in April 2018, with another six cycles and the same drugs. The next scan was in July 2018. Chemo was working again, nodules had shrunk or disappeared; better than expected but at the next scan in September I got less good news. There was lung disease progression – 30 nodules, some had doubled in size. On the upside, the pelvic area was stable and there was no new disease. As a result, my oncologist changed the drugs.
I started the new regime of six cycles in September this year. Aside from the standard side effects of having your body decimated by drugs, I get something called First Bite Syndrome – every time I put food in my mouth for the first time my saliva glands go crazy and cause a burning sensation in the jaw.
I’d gone from cured to incurable in fifteen minutes.
Cancer changes you, it's unavoidable. I see the world through a new lens, with a different perspective on life. Some of it bad. But some of it good too.
Therefore, relationships inevitably change. Roles change. I've gone from being the provider, supporter, advisor, carer, to almost the opposite. My wife needs to look after me (more!), my boys now worry about me, I'm less of the "big brother" to my sister, and my Dad faces burying a child. The dynamics have changed.
No one wants to burden me with their problems. How do you argue with someone in my position? Is my opinion more important because I've got cancer? It's tough. The strain on our little family is immense, and I see this as something I need to resolve. And so, I pick myself up, take a deep breath, and I go again. And try to live my life, with as much enjoyment as possible.
Matt's story can be explored in further detail at www.bowelbloke.com
Matt also features in an episode of our podcast 'In conversation with George Alagiah: A Bowel Cancer UK podcast'. In the episode George interviews Matt and the charity's Chief Executive, Deborah Alsina MBE, about living well with advanced bowel cancer.
Life has been pretty busy since December 2018! The good news is that I'm still here to tell the next chapter – that means I was diagnosed over six years ago, and three years since being told to go home and get my affairs in order. So, I consider myself lucky to have outlived expectations.
I managed to get some Radio Frequency Ablation (RFA) during 2019 and had a clear scan in April 2020. I had a year off chemo, which was fantastic and gave me a chance to rebuild my body and get relatively fit! Unfortunately, ten lung nodules returned in June last year and so I had to get back on the dreaded FOLFIRI for another 12 cycles.
It's been a mixed bag since then – still no new disease and stable in the lungs – I normally have shrinkage after treatment so was a bit disappointed. Although I was expecting worse as I had COVID in January and then multiple delays and infections. I am hoping to get some more RFA soon – I figure if we can zap another 10 lesions, maybe only five will return.
The pandemic has been challenging for everyone; I have tried to embrace the positives – the most important one has been having my boys at home, and as a family spending quality time together. These times are so precious.
I have also managed to create and launch a new charity, The Cancer Club. Since I've had cancer, it has been incredibly difficult to find people "in the same boat" and so the charity is to help men living with advanced cancer by providing a place to talk, get involved in sport, and hopefully have some fun.
Please take a look and follow:
But we're improving access to treatment and care for advanced bowel cancer
Nearly 10,000 people in the UK are diagnosed with advanced bowel cancer each year. This is when the cancer has spread to somewhere else in the body, such as the liver or lungs. People with advanced bowel cancer typically have poorer outcomes but access to surgery and drugs can help to extend life and can sometimes be curative.
We're determined to improve survival rates and support for people with advanced bowel cancer. We want to see improved access to high-quality treatment to ensure longer survival and a better quality of life for people, including:
- Increasing survival rates and improving holistic support for patients and their families
- Reducing inequalities in access to potential life-saving liver surgery
- Improving access to cancer drugs based on clinical need and not postcode
- Providing better communications and support for people with palliative and end of life care needs.