About the author
My name is Ruth. I’m 54, a mum to three grown-up children, a proud granny to two little ones, and I live in beautiful Tynemouth, on the northeast coast. After working in the NHS for over 30 years – first as an occupational therapist and then as a psychotherapist – I never imagined I’d be navigating retirement due to ill health. But life, as it often does, had other plans.
My cancer journey
My journey with bladder cancer began in early 2022. I noticed tiny spots of blood after going to the toilet. I’d seen the adverts, “see blood, see your doctor”, so I made an appointment. Initially, because I was post-menopausal, the bleeding was thought to be vaginal, so I was referred to gynaecology. But when it happened again, a few more times over the next couple of months, I was sent for an urgent urology investigation.
In June 2022, a cystoscopy revealed a tumour in my bladder. Soon after, I had a procedure to remove the tumour and take biopsies. The diagnosis came in July: muscle-invasive bladder cancer. I went to that appointment with a close friend, and thank goodness I did. I knew it might be cancer, but I wasn’t expecting it to have gone into the muscle wall. Hearing those words was a huge shock. We sat in the park afterward, had a few tears, and tried to take it all in.
Treatment begins
From there, everything moved quickly. I had three cycles of chemotherapy followed by 20 sessions of radiotherapy at the Freeman Hospital in Newcastle, where all my treatment has taken place. The aim was curative. I chose radiotherapy over bladder removal – a difficult decision, but I weighed the pros and cons carefully and went with what felt right at the time.
For a while, it seemed to have worked. I had three-monthly scans and cystoscopies, but nine months later – towards the end of 2022 – the cancer came back. This time, it was in my bladder again, plus the upper ureter near my left kidney, and a nearby lymph node. That meant more chemo, then major surgery to remove my bladder, kidney, uterus, and ovaries. I had four more rounds of chemo from January to April 2024, and then, that July, I had the surgery.
Facing the big one
Before the operation, I tried to get my house and finances in order, just in case. Once I was in the hospital, things moved so fast I just had to go with the flow. It was a relief to wake up afterward and know I’d made it through. The early days were tough. Moving around was difficult and uncomfortable, and I remember wondering how I’d ever walk upstairs again. But with support from the physio team, I did manage it, step by step.
By the time I left hospital nine or ten days later, I could get myself washed and dressed, eat normally again, and – crucially – change my urostomy bag myself. That first cup of tea back home tasted like heaven! I’d organised a rota of friends and family to pop in daily, and that was a huge help. Just having someone to sit in the garden with, or join me for a short walk, made all the difference.
Tracking progress
I napped when I needed, listened to my body, and took things slowly. For the first few weeks, I needed lots of rest. Keeping a journal really helped. I could look back and see how far I’d come. Recovery isn’t always linear. Some weeks I’d feel stuck, then suddenly I’d turn a corner. Big milestones for me were being able to walk to a nearby café, and about seven weeks post-op, driving again.
I did struggle a little at first with changing my bag, especially when I was still exhausted. But with the help of my lovely stoma nurse Clare Bird, who had also been my cancer nurse back in 2022, I switched to a two-piece system that worked better for me. Having someone who understood my journey made such a difference.
Support came from many places: friends, family, Maggie’s Centre, the Macmillan helpline, counselling at the Freeman, and my amazing medical team. The Fight Bladder Cancer Facebook group and the UA’s website were a lifeline, too. Seeing others living full lives with urostomies helped me feel confident that life could still be good.
Tough decision for greater good
When cancer recurred again, in late 2024 – this time in a pelvic lymph node – I was treated with SABR, a highly targeted form of radiotherapy. It worked on that node, but sadly, in April this year, scans showed new activity in three more lymph nodes. I’m now preparing to start chemotherapy again. It’s been a lot. I recently retired from the NHS on medical grounds, a tough end to a career I deeply valued. But I also recognise that it’s given me space to focus on the relationships and activities that nourish me.
Nature has always been a source of solace. During the pandemic, I found sea swimming and made close friendships through it. I also do allotment gardening, practical DIY, and volunteer gardening with the National Trust. I’ve taken up willow weaving and green woodworking, skills I’m slowly returning to post-surgery.
My family have been very supportive throughout. I think it’s natural to feel sad about the impact the cancer diagnosis and recurrences have had on them, too. But ultimately, you can’t really protect people from that, and – in the end – we all have to find our own ways of coping.
Making plans
Three and a half months after surgery, I decided to test out a night away in my micro camper, Biffy, at a local campsite. It went brilliantly. Honestly, having a night bag is easier than trying to find a toilet in the middle of the night! That trip gave me the confidence to plan something bigger.
Cornwall had long been on my wish list. While still recovering in hospital, I started dreaming about a trip there in Biffy.
Inspired by the book The Salt Path, I mapped out a route along the perimeter of North Devon and Cornwall: Lynton, Treyarnon Bay, Porthtowan, Carbis Bay, Sennen, the Lizard, Falmouth, and Gorran Haven. I stayed at campsites and Airbnbs, walked stretches of the South West Coast Path, listened to skylarks and stonechats, swam, and soaked in the wild sea air.
Although I don’t often have problems with bag leaks, it did happen a couple of times while out walking, but I’d packed spares and managed the situation. A radar key, a lanyard for hidden disabilities, and a waterproof pad for beds made it easier to feel confident dealing with any issues. It turns out a hedge can be just as helpful as a toilet sometimes!
Finding my rhythm again
I think for many, your 50s can be a transitional and challenging time, especially for women, and that has certainly been the case for me. In 2020 I found myself dealing with the breakdown of a long marriage, alongside the pandemic, and the death of my father. So, there was much to deal with and process even before my cancer diagnosis.
My recent time on the road with Biffy, walking the coastal path, breathing in sea air, gave me plenty of time both for reflection and just being in moment. One particularly joyful moment was a one-to-one kayak session on the Helford River. It was peaceful, beautiful, and a confidence boost. I walked miles of coast path, tackled hills and steps, and found my rhythm again. When you’re on your own, people tend to chat more, and I had some lovely conversations along the way.
Even though I’m still dealing with cancer, I truly believe that having my bladder removed has extended and improved my life. I don’t feel that having a urostomy has hampered me at all. And yes, sleeping through the night without needing the loo is a bonus!
To anyone facing urostomy surgery: I know how daunting it feels. But take courage from the many people living well with a stoma. Within a couple of months, you’ll feel stronger. And before long, you’ll be back to doing the things you love. Ask for help – practical and emotional – and don’t be afraid to be honest about what you need. There is so much support out there, from the NHS, charities such as the Urostomy Association, and even stoma suppliers.
Life has taken some unexpected turns, but it’s still a good one. And I intend to keep living it fully.
