Dear Diary...A day in the life of someone with bladder cancer

Gerry* was diagnosed with high-grade bladder cancer in 2022. He received an incorrect course of Intravesical immunotherapy (BCG), which treated the cancer but left him with severe urinary tract bleeding and urinary urge incontinence. This is his story.

NAME: Gerry

FAMILY: Adult children and an unconditionally-loving dog.

OCCUPATION: Healthcare worker.

CONDITION: Bladder cancer.

SYMPTOMS: Severe urinary urge, frequency and blood in urine.

TREATMENT: Intravesical immunotherapy (using BCG).

Trigger warning: suicidal thoughts

*name changed for privacy.

Life and work...

After my intravesical immunotherapy using BCG to treat my bladder cancer was administered incorrectly (two acute doses rather than one acute and one maintenance dose), I developed severe urinary tract bleeding and urinary urge incontinence. This meant I was experiencing a sudden and very intense need to wee and often there was only a few seconds between the sensation of needing the toilet and the release of urine. I struggled in my job as a healthcare worker because I was having to go to the toilet sometimes twice an hour. Most of the time I was urinating blood.

Incontinence...

I had episodes of urinary urge incontinence (not being able to hold on until I got to the toilet) in the car, in the street and even in a public lift when we were on holidays. I tried wearing the continence aids (pads and pants), but found they were too bulky so you could see them under my clothes. An elderly man caught me urinating on a tree and he started screaming at me. I was worried that he would call the police.

I could not tell my employer that I had bladder cancer because I was worried that they would find a reason to terminate my employment. I could not tell my friends because it was embarrassing. There were times when I felt very alone and I wondered what would happen if I ended my life. My daughter showed me incredible kindness and understanding and helped me through the hard times. She isn’t a nurse, but her compassion has simply changed everything.

The innovation that helped me...

I came up with a solution that helped me. It was simple, but it worked. I kept a large plastic bag in the car to cover myself so that I could pull over in a side street and wee in the urine bottle I had hidden under the car seat. I would put the bag on my lap and pretend to be looking through my shopping to find something so I could wee in the bottle without anyone noticing. Innovation does not have to be high tech. Simply carrying a urine bottle and a very large plastic bag in your car can make all the difference.

What I have learned...

Eventually, I resigned from my job as a healthcare worker and now work in an office. I have learned a lot over the last few years of experiencing bladder cancer and incontinence. The most important thing is to accept help. You never know what is out there until you have a look. Sometimes you get help from people you don’t expect. Go your own way. Ask questions, join online support groups like BEAT (beatbladdercanceraustralia. org.au). Be your own best friend and advocate. Remember that your medical professional is obligated to provide informed consent before any treatment. In other words, they are supposed to explain the risks, the benefits and the alternatives. Please, if you feel that you are not being provided with informed consent, ask for a second opinion. Work out what matters to you. Life is a gift. Don’t waste it on people who don’t care about you. Have a reason for getting up in the morning. I firmly believe that life has meaning and purpose when you serve other people. You are important and you do matter. Even when you feel ashamed and embarrassed you have a right to be here. Try to surround yourself with people who care about you.

Intravesical immunotherapy (BCG)

According to Cancer Council NSW, Immunotherapy is treatment that uses the body’s own natural defences (immune system) to fight disease. Bacillus Calmette-Guérin (BCG) is a vaccine that was originally used to prevent tuberculosis. It can also stimulate a person’s immune system to stop or delay bladder cancer coming back or becoming invasive. It is put directly into the bladder through a catheter. Patients may be asked to change position every 15 minutes so the vaccine washes over the whole bladder. This is usually done as a day procedure in hospital, and each treatment session takes up to 2 hours.

Watch a video from Cancer Council NSW for more information on immunotherapy vimeo.com/220265929

What is urge incontinence?

As the bladder fills with wee (urine), it stretches to make room for more wee. When the bladder is about half full you feel the need to go to the toilet. A healthy bladder can hold up to 600mls of wee, so most people can hold on after this initial feeling until it’s convenient to go to the toilet.

People who experience urge incontinence can get a strong feeling to wee (urinate) even when the bladder isn't full. This can occur in both men and women and involves a strong urge to wee, often followed by loss of wee before reaching the toilet. If you experience urge incontinence you may also have the need to wee more frequently. Even if you don’t accidentally lose wee, urgency and frequency can interfere with everyday activities because of the need to keep going to the toilet.

Urge incontinence seems to become more common as we age. Symptoms may get worse at times of stress and can be exacerbated by fluids like tea, coffee, fizzy drinks or alcohol. Urge incontinence (leaking wee) may also occur as a result of constipation, an enlarged prostate gland or simply the result of a long history of poor bladder habits such as going to the toilet before the bladder is full, 'just in case'.

Urge incontinence can be linked to multiple health conditions, including stroke, Parkinson's, multiple sclerosis and other health conditions that interfere with the brain's ability to send messages to the bladder via the spinal cord. These conditions can affect a person's ability to hold and store wee. Pelvic floor (muscles that hold up your organs) dysfunction can also be a factor so your doctor may suggest an assessment with a pelvic floor physiotherapist.

If you or someone you care for are experiencing problems with urgently needing to go to the toilet, call the National Continence Helpline for a free and confidential chat with a continence nurse specialist. 1800 33 00 66 Mon-Fri 8am-8pm AEST