Jane’s Story: Bladder Cancer

Jane was 60 when she was diagnosed with bladder cancer in May 2024. She previously worked in health and social care, and in 2019 was awarded a PhD for her research on befriending for people living alone with dementia. 

Noticing something wasn’t right

I had worked in the NHS for many years but when I noticed blood in my urine, it did not occur to me that I might have bladder cancer.

I searched online for possible causes and was alarmed to discover that blood in the urine could be a sign of bladder cancer.

After three days the bleeding stopped, but I believe that if you are worried about cancer it is better to get checked so I made an appointment at my health centre.

My GP ruled out a urinary tract infection, and told me that blood in the urine is a red flag symptom for bladder cancer. Around the same time, I also experienced brief episodes of abdominal cramping that felt like period pain.

Looking back, I remembered having similar symptoms the year before. At that time I was worried I might have a gynaecological cancer, but tests for these were clear, and in any case the symptoms disappeared for many months.

I now wonder whether the bladder cancer could have been detected sooner had I been more aware of the signs and symptoms.

I had also been a heavy smoker for 25 years but did not realise that smoking significantly increased my risk of developing bladder cancer.

 

Getting referred and receiving a diagnosis

My GP requested an urgent ultrasound scan and cystoscopy, and in May 2024 I was diagnosed with bladder cancer.

I underwent two TURBT (trans urethral resection of bladder tumour) procedures and a biopsy was taken.

The results showed three high-grade tumours which had penetrated the inner lining of my bladder but had not spread into the muscle.

It was a frightening time.

I am deeply indebted to the Macmillan Support Line and Dundee Maggie’s Centre. Their support before, during and after my diagnosis and treatment was invaluable.

 

Making difficult treatment decisions

After my diagnosis, I was faced with a difficult treatment decision. I needed to choose between immunotherapy and surgery.

As a layperson, I found it daunting to research and understand the benefits and risks of each treatment option and apply them to my own situation.

Surgery would permanently change my body, while immunotherapy might not work for me because my cancer has a high risk of returning.

Fortunately, I found Action Bladder Cancer UK’s Patient Decision Aid for people with high-risk non-muscle-invasive bladder cancer.

It helped me understand my options better and enabled me to have informed discussions with my urologist.

My consultant explained that if immunotherapy was unsuccessful, the outcome of surgery later might be less favourable because my cancer had been identified as aggressive.

After careful consideration, I decided to have surgery to remove my bladder, surrounding organs and several lymph nodes.

 

Surgery and urinary diversion

Before the operation, I had another major decision to make about urinary diversion.

I could choose an ileal conduit, where urine continuously drains into an external urostomy bag, or a continent urinary diversion that would allow urine to be stored internally and released at certain times.

I chose a continent internal pouch. The pouch was created from a section of intestine and sits inside my abdomen. It connects via a channel to the outside of my body through a small opening, called a stoma, near my navel. The pouch is designed to collect and store urine until I empty it by inserting a catheter, a flexible tube, through the stoma.

My operation took place in October 2024.

I have enormous respect for my surgeon, who performed a highly complex nine-hour operation, and for the ward staff whose kindness, humour and expertise helped me through a very difficult time.

 

Recovery and complications

My recovery was long and challenging.

I spent five weeks in hospital and endured several complications, including sepsis, anaemia and a bruised nerve that caused loss of movement in my lower left leg.

When I returned home, I had to use crutches to walk and still had two catheters draining into leg bags. One diverted some urine from my kidneys to allow the newly created pouch to heal. This was removed after six weeks. The other drained urine directly from the pouch and was left in place for a few months.

At first, I had to gradually stretch the pouch by clamping the catheter for increasing lengths of time each day to allow urine to build up inside it.

Unfortunately, the pouch did not expand sufficiently and later had to be enlarged under general anaesthetic.

Recovery was physically and mentally gruelling.

The catheters leaked and urine frequently got onto my clothes, bedding and the floor.

The pouch is made of intestine which naturally produces protective, lubricating mucus.

I had to regularly flush the pouch and catheter with saline to prevent mucus build-ups and blockages.

When the pouch catheter was removed, I needed to self-catheterise every two hours, day and night, to try to prevent leakage.

It was exhausting and unsustainable. My specialist nurse suggested wearing a urostomy bag to catch the leaks and I found this incredibly liberating.

There were times when I felt that I no longer recognised myself. My small flat was filled with medical supplies and my whole life revolved around recovery, learning to walk again and adapting to an entirely different way of passing urine.

Throughout this phase, I received exceptional support from my family, district nurses, an occupational therapist, a physiotherapist and my urology specialist nurse who continues to provide expert advice whenever I need it.

 

Learning to live with a continent pouch

Although I wear a urostomy bag, I still need to catheterise regularly. I do this every two to three hours.

Emptying the pouch prevents urine becoming stagnant and reduces leaking and the risk of infection. It also helps keep the stoma and channel open and, for me, feels closer to emptying a natural bladder.

I recently underwent a procedure to widen the channel after it began narrowing and making catheterisation difficult. Following that procedure, I spent two weeks with a catheter continuously draining into a bag.

It gave me a valuable insight into what life with an ileal conduit might have been like. Even though my pouch still leaks, I do not regret my decision. It was the right choice for me.

I like the feeling that I have voided my ‘bladder’. Also, afterwards, my bag remains empty for an hour or two and sometimes longer.

Catheterising outside the home can be challenging. I rely on clean, accessible public toilets with enough space and surface area to manage my equipment.

I prefer to use accessible toilets because I feel under less pressure to hurry as I do in standard toilets. In the latter, I have had the experience of people banging on the door and making audible comments about how long I was taking, made worse by the fact that my disability is invisible.

These experiences are upsetting and stressful. I believe there is still significant work to be done to improve the availability of hygienic, accessible public toilets for people with a wide range of disabilities and medical conditions.

The Mitrofanoff Society has been a good source of support and advice (the type of urinary diversion I have is sometimes called a Mitrofanoff). Following their recommendation, I wear a medical alert bracelet that states: ‘Mitrofanoff Urinary Diversion, No Urethral Access’.

 

Recovery, independence and returning to life

With practice, self-catheterisation became much easier, and I gradually developed confidence in managing my healthcare outside the home in my local area.

Next, I started taking day trips to nearby cities, carefully identifying suitable toilet facilities so I would feel less anxious about returning.

More recently, I successfully completed my first overnight stay away from home.

My ambition is to travel abroad, although I know it will require diligent planning around medical supplies, insurance and accessible facilities.

With adjustments, I have been able to resume all my other previous activities, from voluntary work to hill walking.

I was always a keen swimmer, and I was delighted to return to the pool. I also took up running as an important part of my recovery, helping me rebuild strength and improve movement in my leg. For both activities, I use an ostomy belt to keep my urostomy bag secure and supported against my body.

Last year, I completed a 10km charity run.

For anyone who is a swimmer with a urostomy bag, I found out the hard way that there is a normal increase in urine production when your body is immersed in water, especially cool water. This is worth knowing whatever type of urinary diversion you have.

 

Life after treatment and living with long-term effects

One aspect of recovery that surprised me was the wider impact the urology surgery had on my body. I encountered changes which I had not been alerted to in patient information literature. A radical cystectomy affects many body systems, and in my view, a holistic approach is vital.

The removal of pelvic lymph nodes resulted in lymphoedema, a serious lifelong condition that causes swelling in my legs and lower abdomen due to a build-up of lymph fluid.

Lymphoedema can get worse without proper care. I am monitored by a lymphoedema specialist.

I now wear medical compression stockings every day, keep my legs elevated when at home, and take regular exercise.

I also experienced significant menopausal symptoms after surgery. I was already post-menopausal, but my ovaries still produced small amounts of hormones. Their removal caused severe fatigue, brain fog, appetite changes, mood swings and a crawling sensation on my skin called formication, which kept me awake at night. Thankfully, these symptoms have largely settled over time.

If my pouch did not leak, the only visible sign of my urinary diversion would be a small, flat stoma, the size of a 20p piece. I have come to see my stoma as an integral part of my body and have even become fond of it. I named her Julie. She is a beautiful dark fuchsia colour almost the shape of lips.

While wearing a urostomy bag has altered my body image, I do not feel embarrassed about it. In fact, it has brought out the activist in me. I am happy to talk openly about my experiences and help challenge misconceptions about living with urinary diversions and stomas.

I am single but I imagine that if I was in a relationship, or started a new one, I might initially find intimacy awkward, though not impossible.

 

Looking ahead

I live with the knowledge that the cancer might return, but I came to the realisation that my life has always been uncertain.

I continue to adapt to life with my urinary diversion and remain determined to travel more, including abroad.

Facing mortality has made me focus on what matters most to me: being useful, staying connected to people, enjoying the arts and nature, being politically active and appreciating everyday life.

As E.M. Forster wrote: ‘Death destroys a man: the idea of Death saves him’. This perspective shapes how I try to live my life today.

Everyone’s experience is unique, but I hope that sharing my story helps someone feel less alone. I am also keen to raise awareness of bladder cancer, highlight the importance of high-quality information to support decision-making, and promote a holistic approach to treatment and care.