About the author
My name is Wil Andrews and I live in West Yorkshire with my wife Sue. Having had bladder cancer twice, and living with a urostomy, I’m telling my story to show that you can still enjoy a full life beyond surgery. I also want to share some practical solutions that have made my life with a stoma that bit easier – perhaps they might help other urostomates, too.
First diagnosis of cancer
My first experience of bladder cancer was when I was 54. The diagnosis was a big shock and a lot to process. The recommended course of action was immunotherapy, so for three years I was treated with BCG (Bacillus Calmette Guérin).
I was then monitored for seven years until being discharged in 2014. Throughout, I was able to continue my work in education and had a happy and fulfilled life with Sue. We enjoyed exercise, travel and spending time with our growing family, and when I retired in 2016, I was looking forward to staying just as active.
Diagnosed for the second time
Then, just over two years later, came the devastating news that I had bladder cancer for the second time. Totally unrelated to my first diagnosis, this was a rare, muscle invasive and aggressive small cell carcinoma. I was stunned and fearful of what the future might hold.
Following chemotherapy, I had to choose between radiotherapy or major surgery to remove my bladder and prostate gland along with the surrounding lymph nodes. After much consideration, and talking with a friend who had been a Macmillan nurse, I opted for the surgery.
At this point, I didn’t fully understand all the implications other than that I would be left with a stoma. Life is so precious, and I was more focused on surviving than thinking about the lifestyle changes that lay ahead.
In May 2019, I had my operation at Pinderfields Hospital in Wakefield and reality kicked in – I now had a real stoma and had to learn to manage it. During those early days, I spent some time learning how to look after my urostomy, and how to change the pouch and use the night bags.
Dealing with leaks
Once home, I encountered challenges that most urostomates are familiar with, including leaks. I felt my life was becoming very constrained, which was frustrating. Physically I was improving but psychologically I was struggling because even when out walking, leaks were often a problem. I turned to the stoma care nurses at my local hospital in Pontefract – they listened, diagnosed the problem and gave me different pouch styles to try until we found one that worked well for me. A great team!
At least now I was dry – most of the time – but I was determined to find out what other stoma products were out there. Scouring the internet, I was amazed to find so many companies offering most of the items I needed to help me live life as normal.
The perfect trousers
I knew I had some physical limitations – not lifting, giving my body time to heal properly and managing a stoma that sat right on my ‘bend line’. Psychologically things were improving – leaks under control, a pouch I was comfortable with, and a night bag with a long flexible tube so that I could easily turn over in bed. I had special high-waisted underwear (CUI), and a Suportx breathable tube belt to help support my abdomen. Plus, Sue came up with a great idea to make using my night bag more comfortable so I could get a good night’s sleep. She unpicked a small area of the outer leg seam in my pyjamas for the tube to go through. Simple ideas are often the best!
It was also thanks to a suggestion from Sue that I found the perfect trousers to suit my size and new shape. With our grandson’s school prizegiving coming up, it had reached the point where I was considering asking Simon Cowell where he got his high-waisted trousers! Instead, I contacted a local tailor, who has been brilliant.
Having listened carefully as I explained my problem and quickly came up with a prototype. After a few adjustments, he then made the trousers for me in time for the big event. They were perfect in every way: elasticated waist inserts; discreet space for an expanding pouch; high waist; buttons for braces; loops for an elasticated belt, fitted well and comfortable too. I felt reassured that no-one would notice that the trousers were different, and I now have pairs to suit every occasion, plus some tailored shorts.
Cycling and swimwear solutions
When it came to exercise, cycling presented a bit of a challenge. That is, until a Suportx rep told me the company could make me some high-waisted support underwear with padding in the places I most needed it. Through the same firm, I also found a swim tube to support my pouch. I tend to wear a UV rash vest and swim shorts – Tom Daley-style ‘budgie smugglers’ are not for me!
Smooth travel
Sue and I were keen to continue our travels but in a way that would not aggravate the inguinal hernia I had developing. We chose our first-ever cruise, setting sail less than six months after my stoma surgery. It was the perfect solution for seeing lots of places without the need for us to handle our luggage, and it went without a hitch.
On the return journey I used my Sunflower Hidden Disability Lanyard for the airports and flights and didn’t have to lift a suitcase. I even had a solution for carrying my night bag discreetly – a denim shoulder bag made by our daughter’s mother-in-law. I could pop to the toilet, connect my night bag, tuck the night bag and tubing into the bag, close the Velcro cover and saunter back to my seat with no-one even batting an eyelid. All was well with the world.
Role reversal
Sue has always been a great support to me, but when she became very ill in 2022 and needed to be in hospital, it was time for me to look after her. Thankfully, she is doing well now, and having both had such big health scares we are even more determined to make the most of life.
We’ve been able to continue with most of the things we enjoyed pre surgery, exercising, visiting friends and family, and going on holiday. We’re also keen gardeners – well, I cut the grass! Most importantly of all, we are both still here and we are active and happy.
We couldn’t be more grateful to the NHS staff who helped us through such challenging times. They continue to take great care of us, and we also appreciate all the camaraderie and support that comes from being part of the Yorkshire & Humberside branch of the Urostomy Association.
Long live life!
- Visit our Directory of suppliers for clothing companies which specialise in stoma fashion
- Wil first shared his story in the Summer 24 edition of our Journal. See more about our Journal.