My name is Maureen. I’m 65, retired and have been married to Ian – my best friend and supporter – for 44 years. We live in Durham and have two children, plus four young grandchildren. I’m sharing my story to help people understand that having a urostomy doesn’t mean giving up everything you enjoy. You may encounter challenges as you adapt, but with support and perseverance you can find a new lease of life, so please don’t lose heart.
I’ve always enjoyed playing sports, and in 2015 I took up cycling. Never did I think I’d fall in love with it the way I did. I joined Durham Network Breeze cycling club in 2018 and haven’t looked back! The friendships I discovered with like-minded women cycling in the countryside, putting the world to rights during a coffee stop or two, have been really uplifting. And the freedom of getting somewhere under your own steam, in fresh air, seeing things you just never would from a car, is so fulfilling. You are one with nature.
In 2021, I completed the Whitehaven to Tynemouth Coast to Coast. I then undertook the British Cycling training and became a Breeze Leader. I’ve led local rides and longer ones, including a tour from Edinburgh to Aberdeen. I thoroughly enjoy my voluntary role as a Breeze Leader, and love meeting new people and sharing experiences.
Last December, I had the honour of Cycling UK naming me one of their Top 100 Women in Cycling. I’m not a campaigner, nor am I actively involved in changing lives, but I’ve been told I’m ‘inspirational’. Why? To me, I’m just one of millions of people who have heard those dreaded words, “You have cancer”. Giving up cycling, however, was never on my agenda. It never even crossed my mind that having cancer could change my life forever.
Putting on a brave face
Having had bladder infections from early childhood, regular cystoscopies were part of my life to ensure that my badly scarred bladder wasn’t showing signs of anything ‘nasty’. It was in May 2023 that this routine procedure revealed cancer.
I can still remember my pounding heart and the awful sinking feeling when I received notification of an appointment with my amazing consultant, Jenny Koo Ng at Sunderland Royal Hospital. I’d been under her care for ten years, but knew instinctively that meeting her in person meant I wasn’t going to get good news.
I had no symptoms and it was hard to contemplate. I couldn’t bring myself to tell Ian; I needed time to absorb it and do some research first. Two days later, the secret was out as my appointment was confirmed by letter.
Ian feared the worst straight away, as I had, but I put on a brave face and said it was possibly a review of my treatment. How I wished it was. Ian came with me to the meeting. I didn’t break down as Jenny gave me the news. How, I never will know, but I was calm and asked many questions.
I was adamant that if I was going to have an operation, it was going to be the total removal of my bladder. I was tired of cystoscopies and general anesthetics. Jenny was in agreement: it was not only the best option but the only option. I could never thank her enough for the care she had given me over the years, but I was now to be handed over to another consultant.
Due to complications with my left ureter, I was referred to the Freeman Hospital in Newcastle. Ian and I saw Dr Arjun Nambiar, a surgeon specialising in robotic reconstructive urology and pelvic oncology. I wasn’t expecting an actual date for my operation, more a period of time, but was told 19 July. I was delighted, not because it was going to be sooner rather than later, but because it meant I could still participate in a planned cycle just days before! A great way to take my mind off what was coming and spend time with my cycling buddies.
Surgery and beyond
My surgery lasted ten hours, and most of it was done robotically. In addition to a radical cystectomy (the removal of my bladder, nearby lymph nodes, womb, ovaries and part of my vagina), part of my bowel was used to reconstruct both a left ureter and urinary diversion via a stoma.
Afterwards, Dr Nambiar made time to telephone Ian, letting him know all had gone well. I also remember him coming to see me on the recovery ward, as well as the night nurse who looked after me with compassion before I was moved to the urology ward the next day.
During ten days in hospital, I learned how to look after my stoma. My first leak was after removing the night bag for the first time and forgetting to put the stopper in the day bag. Whoops!
My family made the 21-mile journey to see me daily. Another visitor was a lady in her eighties, Eileen Spraggon, a former nurse who had lived with a stoma since her twenties. A long-serving Urostomy Association volunteer, Eileen had been given my number before my operation and we’d talked on the telephone. I was inspired by her story, and it was lovely to meet her.
Sadly, Eileen passed away last year, but I will always be grateful to her for introducing me to the UA. She brought in a couple of their magazines for me to read, and I subsequently joined. I have found The Journal very informative and inspiring. I even passed an article on to my friend’s brother-in-law after he was diagnosed with bladder cancer.
Learning lessons
Once home, I was visited by community stoma nurse Kayleigh, who was brilliant. She gave me tips, like using a flannel as a towel to dry the stoma area, and ordered various samples so I could find the bag that suited me.
At first, I had lots of leaks. Choosing the right bag, and ensuring I allowed enough time for the adhesive to properly attach to my skin, were key. Ian and I also bought a waterproof mattress cover for any nighttime mishaps.
We took the brave decision to go to Wales just six weeks after my operation. I learned lessons on this trip! The first was to carry a night bag in the car in case of long traffic jams or remote countryside, where toilets are few and there was nowhere to go, even for a wild wee!
The other lesson was to carry a collapsible bowl for the nightstand to go in. Embarrassingly, I forgot to ensure the tap on my night bag was in the off position. I woke after a couple of hours, but the carpet was already wet. Owning up to the landlady was hard, but she was brilliant, taking it in her stride. She borrowed a wet/dry vac machine and put down some old towels to soak up the wetness. I can’t tell you how grateful I was.
Back in my happy place
Keen to get back on my bike again, I’d put a plan to Dr Nambiar after my operation. My idea was to use an indoor trainer to build up strength and stamina before going out, hopefully by December. He felt this was reasonable, so I did a couple of 12.5-mile sessions indoors. But the pull of nice weather was just too much and, after checking with Dr Nambiar, I ventured out in October. I did a couple of short rides with the Breeze group, and then – on 4 November – I led an easy Breezy ride. From there, there was no stopping me! I was back in my happy place.
In 2024, I cycled with my girlfriends from Carlisle Cathedral to Newcastle Cathedral, and St Paul’s Cathedral to Canterbury Cathedral, with panniers. My night bag only just fits into my pannier (height being the issue), and I obviously have to carry day bags and all the other bits and bobs we need. We share rooms and I put an old pillowcase over my night bag. All I have encountered from this great bunch of women is kindness and support. We’ve got three more cycling weekends to look forward to this year.
My urostomy hasn’t held me back from foreign travel either – I’ve visited places in Europe and even Saudi Arabia.
So, has having a urostomy affected my life? Yes, I have more things to pack and carry around with me. Yes, I do have leaks now and then. But I can honestly say, life without my bladder has been the best decision. It hasn’t stopped me living an active life, and I’m just so grateful to be alive.
