Grandfather Kevin Owen, who lives in Chester, was diagnosed with Stage 3b colorectal cancer when he was 57. He lives with the late effects of chemoradiotherapy and life-changing surgery.
How was your cancer diagnosed?
My symptoms were the classic blood in poo, weight loss and fatigue. Looking back at photos I can see how ill I looked – but it was gradual and difficult to spot. I also had lower back pain which made sense considering where the tumour was. My GP put it down to weight loss and having less ‘padding’.
What treatment did you have?
The plan was to have a period of Chemoradiotherapy for five days a week for five weeks; to either gain a suitable margin for surgery or with the (outside) chance the tumour might disappear. Treatment started in September 2021. Fortunately it was only a 25-minute drive from home.
What was your experience of treatment?
I had been briefed by a registrar about the treatment and what to expect with side effects. No mention was made of any late effects. I had two tattoo dots a few days previous and the therapeutic radiographers were very helpful in explaining how things would work. I was concerned about having an artificial hip and also very curious about the whole treatment.
Treatment started and being told to stay still made me want to itch my nose so badly. The machine started doing its thing. I was told the first stage was the X-rays to ensure everything was spot on. They asked me to stay as still as possible, but I started crying. The fight was on. One of the Radiographers came through to see what was up and I told her and eventually was able to remain calm and start again.
Walking away from the first treatment was weird as I expected something. None of the expected side effects from the Capecitabine had started and I felt OK.
The days turned to weeks and by the start of the third week I was so tired I had a morning and afternoon nap. I was cold all over but my hands and feet were tingly and could not tolerate cold things. I also had cravings for Hula Hoops and was told by my team to go for it.
One other eventful happened during those five weeks. I told the Therapeutic Radiographer that I was worried I was getting so many X-rays on my pelvic area. You know, causing cancer and stuff. She looked at me and just said “Kev, you do know why you are here don’t you?”
I had to go back to the waiting room as I could not stop laughing.
I was monitored with regular blood tests and caught up with a nurse each week. Then came the last treatment: I left my box of biscuits, said Thank You, rang the bell and left.
What happened next?
Then I waited. I was told by my surgeon that I would need to wait for three months as the radiotherapy would carry on working. Nobody checked on me to see how things were. I just felt lost.
On the online forums it was common for people to say they found the waiting the hardest part. I contacted the hospital to try and see a Dietician as I was trying to make sure I was keeping healthy – ready for whatever came next – but nobody came back to me.
Then the time was up and the appointments came through for the scans and I saw my surgeon (he was amazing) just as lockdowns were being reinstated.
No change could be seen from the scans and so an APR (Laparoscopic abdominoperineal resection) was the next step; and a likely permanent stoma. I was given the choice to see during surgery if a possible future reversal could be done. I just went for the permanent stoma as I had supported people with stomas in my work and thought I would be able to handle it easily. I was wrong about that!
Before the surgery I sent a goodbye and love you text to my wife around 8:30am and the next she heard was from Mr Bowden at around 6pm. All had gone Ok, although the tumour was larger than expected and there was a lot of damage to my pelvic floor from the radiotherapy.
I recovered reasonably quickly and was told that I was clear of any signs of disease around three weeks later. I went on my way. Everyone was so relived. I felt lost again.
Did you have any side effects or late effects?
In October 2022, I had a hernia which they suspected was causing regular blockages of my stoma. I was operated on and my surgeon found the bowel had narrowed near the stoma and so fitted a brand new stoma which now seems to work as it should.
Later that year I decided I could no longer work. I felt I was unsuitable to be training people and my mental health and other symptoms were worsening. Throughout 2023 I was trying to get answers about the fatigue, the mental fog, the leg and back pain, the wind and poor mental health.
I came across the Pelvic Radiation Disease Association and this got me thinking. Could this be it? In December 2023 I had an appointment with a consultant and had the most enlightening and powerful hour going through my symptoms and how radiotherapy and the chemotherapy could be the cause.
I was given Pregabalin for the nerve pain which has helped considerably and simple peppermint capsules to ease the wind problem which again, has helped so much.
This has helped me so much mentally in managing my symptoms. I now know that if I am fatigued and I look back over the previous days, I have done too much again. My leg pains come and go but are easier to cope with as the “edge” has been taken off. The wind issue is more under control and I know which foods cause most issues which would always be the case with or without the late effects.
What helped or helps you cope with cancer?
Today, writing this I am recovering after being with my three-and-a-half-year-old grand-daughter during the day yesterday. We laugh together, we giggle together when my stoma trumps and we sneak snacks from the kitchen before Nain (Grand-mother) comes home from work at 2pm.
What did you or do you find hard?
I went back to work around May 2022 (trainer in Social Care) on a phased return. I felt a different person and people noticed. I had lost my spark and passion and I found myself struggling with fatigue which got worse over the following months, I struggled with forgetting words while in training which caused issues, I started having pains shooting down my legs and a stiff lower back, I was on constant food diaries trying to find out why I had so much wind which is an issue with a stoma bag for obvious reasons. But most of all, I felt “numb”. I wasn’t feeling the new start that everyone kept telling me to look forward to.
How are you now?
So here I am, over three years from diagnosis and treatment. My life is much more manageable now since I have been supported with my late effects. I still have periods of resentment when I catch sight of my colostomy bag and need to distract myself with something. I support or volunteer with Bowel Cancer UK, Local Stoma Support group, The Merseyside and North West Cancer Alliance, Pelvic Radiation Disease Association and Radiotherapy UK where I can share my experiences to help others, but also help myself by being with people who understand.
Do you have any advice or messages for others?
I keep thinking back – if I had been told of possible late effects would it have helped at all? The answer is mostly yes as I could have sought help sooner from the relevant people, but the effects would still be there I presume. Still, I am still here!
