By Paul Stewart
My name is Paul, and I have been taking part in the Miles of Hope challenge to help raise funds for the Urostomy Association. With the charity being such a trusted source of support for urostomates needing advice or a listening ear, it is my way of giving something back.
I’m 75 and live in Sheffield with my wife, Morag. I have been retired for 11 years, having worked as a university librarian. I was diagnosed with bladder cancer in September 2018, when I was 68.
When I first experienced symptoms, such as needing to pee but not being able to pass much urine, and traces of blood appearing in my urine, it was initially put down to my having an enlarged prostate. My GP did keep referring me to the Urology Department at the Royal Hallamshire Hospital, and eventually, after cystoscopies indicated a possible problem on my bladder wall, I had a biopsy, which evealed my diagnosis.
Maintaining positivity
I have been very fortunate to be under the care of a brilliant surgeon, Professor Derek Rosario. Even when he had to give me ‘bad’ news, his positive manner was infectious, and this has certainly helped me to maintain a positive attitude. When offered the choice of having a neobladder or a urostomy, I opted for the former, although I was warned that recovering my continence after surgery could take quite some time.
My operation went ahead in October 2018, about five weeks after my diagnosis.
After surgery to remove my bladder and have the neobladder (made from part of my small intestine), I was keen to recover my fitness, although I recognised that this could be a long journey. In hospital you are encouraged to walk around the ward. Once back home, starting with short walks around the block, and gradually extending them, I was able to go for longer walks close to home.
I have been a keen walker for much of my life, and first met Morag while out in the Peak District. Walking in the lovely countryside is our main form of recreation and staying active. Particularly in the company of friends, it is a great way of keeping your spirits up. For me, it has been about getting back to living as full a life as possible.
Just over two months from my operation, I was able to go out walking again. Life wasn’t without its difficulties though, and continence was definitely a problem. I had to rely on continence products to help, although this wasn’t really approved by my surgeon. Doing pelvic floor exercises is an essential part of recovery, but it’s not easy to regain one’s continence with a neobladder, and I admit that I didn’t manage that well.
Travel has been an important part of life to Morag and me, particularly in retirement. So, a little over a year after surgery, we went on a walking holiday to Patagonia in South America. We have been on many holidays together, both in the UK and abroad. Again, part of living life to the full!
Embracing challenges
One of the challenges I set myself was to walk the Coast-to-Coast path, 190 miles from St Bees in Cumbria to Robin Hood’s Bay in North Yorkshire. I set this goal when I was recovering in hospital, and it was originally planned for May 2020, but COVID changed this. Eventually, I managed to achieve my goal, doing it in two parts: from St Bees to Kirkby Stephen in July 2022, and then from Kirkby Stephen to Robin Hood’s Bay in June/July 2024.
Between these trips, in June 2023 I had to have another major op, changing my neobladder to a urostomy, and also having my right kidney removed because of the spread of cancerous cells. Again, I was determined to get my fitness back, and I followed a programme of exercises to strengthen my core. I found that my urostomy was easier to manage than the neobladder, and being able to use a night drainage bag meant I no longer had to get up twice in the night. Incontinence was no longer a problem, although I have had to cope with the occasional ‘accident’.
My Miles of Hope challenge this year was prompted by a reprieve from further surgery. Having had a serious UTI in February, which had to be treated in hospital, it was thought that cancer may have spread to my remaining kidney and ureter. However, a biopsy has shown that, fortunately, this has not been the case – at least not so far.
Having walked the Coast-to-Coast with me, my friend David was keen to do the Offa’s Dyke Path (177 miles) along the England and Wales border. We had booked to walk the first part, from Chepstow to Knighton (80 miles), in September. It didn’t look as if this would happen, as I might have been tied to a dialysis machine, but I have been able to do this first part, with the remaining 97 miles from Knighton to Prestatyn in North Wales to be completed next year, hopefully.
Urostomy life
Having a urostomy doesn’t mean there is any extra planning for a trip like this. We stay in small hotels, pubs and B&Bs, and our luggage gets taken on to the next overnight stop. As for any trip, it’s important to have sufficient stoma supplies, including night drainage bags with a plastic stand. I carry a spare urostomy bag set in my rucksack, but I haven’t had to use that. It’s important to keep well hydrated, so you need to carry enough water.
Thanks to the wonderful generosity of my friends and family, I have so far raised £1,155 for the UA by taking on the Miles of Hope challenge. I first got to know the Association through going to a meeting of the Sheffield branch. They provide great support, and the meetings are an opportunity to get together with people who are in a similar situation. I have found the UA’s Facebook support group really helpful, as is the information on the website and via the webinars.
Life doesn’t need to stop with a urinary diversion. If you are determined, and follow the appropriate exercise regime if you can, you will hopefully get back to doing most of the things you enjoyed before your surgery. It doesn’t have to involve walking long distances. Keeping active is the main thing. When I got home after my first operation, I thought that I would spend a lot of time sitting in my armchair, reading and listening to music. Although these are things I enjoy, I try to get out most days for a walk, maybe just around the neighbourhood.
I wouldn’t have been able to cope with my health issues without the support of Morag, my sons, Dave and Jon, and my friends. My message for anyone setting out on this road: just keep going!
