About the author
Allen Rowlinson was diagnosed with bladder cancer in June 2010, aged just 52. He was working up to 70 hours a week as a childminder and enjoying an active lifestyle, including walking, kayaking and camping. He ate sensibly, had never smoked and rarely drank alcohol. He considered himself “hardly the ‘textbook’ bladder cancer patient!”
Discovering I had cancer
I discovered I had cancer when I had a biopsy to determine what the ‘something’ was that had been spotted on my bladder during a scan carried out because of repeated bouts of epididymitis. In plain English, that’s inflammation of the tube at the back of the testicle. The diagnosis turned my world upside down and my head was filled with questions. How long did I have to live? Would I see my wife Anneke into old age? Would I be around long enough to experience being a grandfather when our son and daughter had families of their own? Would I ever be able to live an active life again? It was a very frightening time for me and everyone close to me.
Life-saving surgery
Radiotherapy was an option but, as my urologist explained, it wouldn’t cure my cancer. It would only reduce it enough to keep the disease at bay for five to ten years. After that, I’d need to have my bladder removed and face a life of weeing differently. So, rather than endure years of worry and then such a major operation later on in life, I decided not to delay the life-saving stoma surgery on offer to me.
Our local specialist cancer hospital is the Christie in Manchester and that was where I received chemotherapy. For the ten hour operation to remove my bladder and create a new way for me to urinate, I was under the care of the team at Wythenshawe Hospital, also in Manchester. I opted for a urostomy rather than a neo bladder because it sounded more practical for the active lifestyle to which I was so keen to return. I was very lucky to have a top surgeon, who has since specialised in teaching others to do robotic surgery, and I have never had a major problem with my stoma.
Having had cancer, I needed regular tests and scans for 11 years until the consultant signed me off, and now have a blood test twice a year to check that everything is working alright. It was both a relief when I was signed off and at the same time a bit of a worry that my safety net had vanished. But I have learned to get on with my life, trusting that if there’s a problem the blood tests will pick it up.
Sources of support
A friend who had the same type of cancer, and the same surgery as me two years before my diagnosis, was a great source of practical and moral support, always telling me to ‘keep my pecker up’. Before my operation, I saw the stoma nurses at our local hospital, Trafford General (the birthplace of the NHS), so they could explain to me what to expect living with a urostomy. As for deciding exactly where my stoma would be located, they had never before been asked to make sure that it would not interfere with the use of a buoyancy aid – as a keen kayaker, I had brought one along to my appointment!
After my operation the stoma nurses continued to support me as much as I needed, and they still do. I also received helpful information from the Urostomy Association, having joined before my surgery. This was how I found out there was a local branch, and Anneke and I attended meetings whenever we could. We both found them invaluable for information as well as support from others
going through the same as us. The branch later folded so when we can, we now attend meetings run by local stoma care nurses.
Embracing life again
As for learning to live with my urostomy, throughout the first year after surgery I used to wake upset that the bag was there. In the second year I still felt frustration, but since then I have generally accepted my situation. Unless something goes wrong – like the occasional leak – having a stoma is hardly ever on my mind and it has become part of my normal life.
When I was first told that I needed a stoma, the nurse said that I would be surprised how soon I would get back to normal. She was right that I did get back to my regular activities, although I have to do some in a slightly different way. I wear a level 1 support waistband for everyday life as I find it holds my bag in place well and stops it bulging, making it less visible. I wear a level 2 support belt for strenuous exercise like lifting, digging and using heavy tools. I also wear it when I go kayaking, along with a leg bag because I can’t necessarily get out of my boat when my regular bag needs emptying.
I’m enjoying life again, and as well as going on camping, walking and kayaking holidays in the UK, France and Luxembourg, Anneke and I have visited family in Holland and Dubai.
“Having a stoma is hardly ever on my mind and it has become part of my normal life.”
Family joy
I would not have got through the down times without my family and especially Anneke. We have now been married for 40 years, which makes me so happy.
It has filled us both with joy to see our son and daughter marry their partners, and we love spending time with our seven-year-old granddaughter. Even she supports me in her own way, having noticed my night bag when staying over at our house. When I explained what it was for, she was concerned that I had been so ill, but we reassured her that I am okay and now she is very matter of fact about my urostomy. Children today are more aware and accepting of health conditions and disabilities, which is fantastic. A while ago she came out with the brilliant statement:
“The good thing about grandad’s bag is that he does really big wees!”
Forever grateful
As a family, we will be forever grateful to all the wonderful NHS staff for all their dedication and care. My advice for living with a
urostomy is to stay as positive as you can and believe that you will find a way to do the things you want to. Also, accept support from family, friends and professionals when you need it. You will get back to enjoying your life and feeling like yourself again.