About the author
Cathy Varley thought that 2024 was going to be her year. But a shock diagnosis of bladder cancer threw her into turmoil. In this blog, composed just four months after her surgery, Cathy describes how she has not only came to terms with her urostomy, but has grown to be proud of it!
Cathy’s story
“2024 was supposed to be an exciting year for me. I was turning 50 in the February, and I was embracing it! I’d got weekends away with my girlfriends, holidays, and a big party planned. I’d also had a trip to Florida booked to watch my 17 year old daughter Greta compete in a huge competitive cheer-leading competition; her ultimate dream come true. I’d never ever missed a competition since she started cheerleading at six years old, and I wasn’t about to miss her being on the world’s stage.
My diagnosis, which I received in the week of my birthday, came as a massive shock; I hadn’t seen it coming. I was being treated for UTIs and the menopause, so I just assumed all my cancer symptoms related to those.
Considering my treatment options
My first instinct, on hearing the news, was to start Googling; looking at what my possible prognosis might be and what my treatment options were. Initially, I was quite positive because what I’d been reading seemed to imply that bladder cancer was quite treatable and, if I’d got one of the lower grade ones, then I could have a quick procedure and a bit of chemotherapy. I thought ‘I can live with that’.
I went for initial surgery in March to determine the grade but, as I was in recovery, the surgeon said “I’m sorry but we haven’t been able to take the tumour out. It looks muscle invasive. You need to prepare yourself for possibly having your bladder removed’. I was just lying there thinking ‘I’m not having my bladder removed, absolutely not, no way!’
So I started researching bladder cancer treatments and bladder preservation and that’s when I went to see Professor Rosario, who was going to be leading on my case. I went into the appointment with loads of questions based on the research I’d done. He told me the results of my biopsy and that all the options I’d researched weren’t suitable for me as my cancer was high grade.
I was hysterical. I was absolutely begging him not to remove my bladder. I’m a 50 year old woman, and I still wanted to wear bikinis. I didn’t want a bag for life. I considered urostomies to be an old person’s thing; not for people with young outlooks, like me.
Professor Rosario also said that going to watch my daughter compete in America wasn’t an option, which was an absolutely devastating blow. I’d already cancelled all my birthday celebrations and the family holiday. Everything just felt horrendous.
An anxious wait
From diagnosis to surgery was a long time; I didn’t have my surgery until July. The amount of waiting, for scans and assessments was really challenging.
Professor Rosario was amazing. He wanted me to have an urgent MRI scan because there were uncertainties about the type of cancer I had due to contradictions in the histology and my presentation. He was concerned that there may be a primary cancer somewhere else.
All this was like a punch to the gut. I went to my GP because I was so overwhelmed by the diagnosis and was struggling to process the information I was given. I just couldn’t stop crying and my anxiety was so high. I recognised my reaction as a trauma response and felt I needed some help to calm my anxiety and process my thoughts.
I was prescribed anti-anxiety medication and these really helped and gave me the processing time and space that I desperately needed.
A change of heart
I thought long and hard, and spoke to my amazing network of friends and family about the cancer, and suddenly my outlook started to change. I’d originally thought I had a small tumour in my bladder, but then I was faced with the fact that the cancer might be somewhere else too, it was high grade and the chance of it spreading was high! I decided that I wanted the surgery; I wanted it all out.
My anxiety calmed down once I was happy with the decision I’d made, and I knew what route I was going down.
I had all the scans and thankfully the cancer wasn’t anywhere else; it was contained in my bladder. I explored having a neobladder, but decided it wasn’t for me, I was slowly starting to feel so much more positive about the prospect of a urostomy bag as I researched other people who had them.
Finding inspiration
I scoured social media for other women with urostomies and I found lots of young gorgeous women with colostomies, wearing normal clothes, swimsuits and bikinis. A couple of them had young children, and their lives were just carrying on, travelling, partying and living life to the full. That was the turning point for me. Finding those stories of real women inspired me, and made me realise that urostomies weren’t just for older people.
Then I spoke to my kids about it and that was another turning point. When I said I was going to have to wear a bag, they couldn’t see the problem. They told me they followed loads of people on TikTok and Instagram who had bags. They were so laid back and cool about it, like it really wasn’t an issue to them, and this was incredibly reassuring.
Preparing for surgery
Meeting with my stoma nurse was another key point for me; she was just amazing. With hindsight, I wish I’d had that meeting earlier, when I was still in denial, and I needed to educate myself. At the time, I didn’t really understand what a stoma was; I didn’t even know what one would look like!
My nurse gave me a little rubber stoma that I could try out, and samples of urostomy bags which I could stick onto my body to see how they felt and looked. I tried them out at home with my kids and my mum. I practiced changing it, and trying on different outfits, and even filled a bag with water to see how it felt.
My stoma nurse gave me so much valuable information about the surgery and life with a stoma. Finding out the reality was just brilliant. I asked her so many questions and she filled me with so much confidence.
Suddenly I was feeling so much more confident about having a urostomy bag. It was the beginning of my new life. It was such a massive shift from where I mentally was at the outset, when I was so traumatised that I couldn’t think straight. I was still absolutely terrified about the enormity of the radical cystectomy surgery I was about to have though.
In the end, I had the surgery in July, it lasted eight hours. They performed a hysterectomy, I had a stoma formed, and they operated on my bowel.
My life now
Throughout the recovery from my surgery, I’d say that the stoma and the urostomy bag have been the easiest bit of the whole process. I had to be more careful about my wounds, and my bowel was very painful. But I’ve had no discomfort at all with my stoma.
I’m finding life with my urostomy much easier than I imagined; I genuinely forget I’ve got it at times. I haven’t found any major issues so far. I experienced a rash with the adhesive with one bag, which was upsetting but, with the support of my stoma nurse we overcame that quite quickly. I’ve had two night-time leaks, but I’m now more aware of checking the connections on the night bags.
I genuinely thought I’d be laid up for months, and not being able to do anything. But I went to a wedding two and half weeks after my surgery. It did wear me out, I have to admit, but I was so proud that I went. Take every day, one day at a time; some days you can do things, and other days you can’t.
It isn’t all plain sailing. I’m having immunotherapy every four weeks, and those sessions wipe me out, and I feel poorly for a week afterward. But the immunotherapy will hopefully stop or slow the recurrence of my cancer, or reduce the risk of it returning somewhere else.
I am back doing everything I did before, and I’m going back to work on a phased return. So far, I haven’t come across any situations where I’ve thought ‘I can’t do that because of my bag’.
I feel that I have a good relationship with my stoma, and I call her Paloma. I’m really proud of it!”