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“I was getting some blood when I wiped after the toilet and at first I thought it was a gynaecological problem. I had it checked and they said everything was fine,” Julie tells Bridge Magazine. “This delayed my diagnosis because I assumed it was a urinary tract infection (UTI). In the end I had to push the doctor to do more tests because my mum had bladder cancer so I was concerned about it.” Julie was eventually diagnosed with bladder cancer via a cystoscopy (a camera which looks into your bladder via your urethra, which is where your wee comes out).
TREATMENT
In December 2021 Julie had intravesical immunotherapy, or ‘BCG’ treatment. This treatment uses a vaccine, originally developed for tuberculosis, placed directly into the bladder through a catheter (a tube that goes into the urethra). This stimulates the person's immune system and stops the cancer from spreading. “I had to hold in urine for 2 hours and move position every 15 minutes to ensure the liquid fully covered the bladder,” said Julie.
Julie waited 3 months for the bladder to heal and then went for another cystoscopy in March 2022 to check the treatment had worked. Unfortunately, the cancer had spread into the bladder muscle, so the doctor recommended having the bladder removed and sent Julie for a scan to check that the cancer had not spread anywhere else in her body. “I was told by the oncologist after my bladder removal and a double dose of chemotherapy, that I would have a 50/50 chance of survival,” recalls Julie. “Chemo was horrible, but I had great care, they adjusted the chemo for the mouth ulcers and nausea.”
"Not looking like a sick person helped me not feel like a sick person."
CREATING A NEOBLADDER
When Julie was told her bladder had to be removed, she was offered the option of a stoma with a urostomy bag, which collects urine on the outside of the body, or a neobladder. “I was pleased to have the option of the neobladder, I thought that I could always go to a stoma at a later stage if it doesn’t work.” Julie spent one month in hospital due to complications with her bowel. Infections also meant Julie had a few visits back to the hospital post-surgery. “The neobladder is not waterproof in the same way that a bladder is waterproof and means any small infections in your body can turn into life-threatening sepsis very quickly,” Julie explains. “I have to watch for signs of infection and carry emergency antibiotics with me. I take them at the first sign of pain to avoid a hospital stay”.
What is a neobladder?
A neobladder is created by stitching a small section of the patient’s small intestine into a small bladder shape and attaching the urethra and kidneys to it. A neobladder can only hold 200ml of wee compared to an adult bladder which can hold up to 600ml.
“My Bladder Control is up and down and I do experience Leakage. I use continence liners, especially when I am out and overnight.”
INCONTINENCE
“I struggled with incontinence after the surgery and pain from holding urine,” Julie tells Bridge. “I was taught to self-catheterise because I was struggling to fully empty my bladder (urinary retention). I now empty my neobladder with a catheter morning and night. I suffer quite badly with sleep deprivation because I have to wake every 2-3 hours to empty my neobladder. It means I often have to nap in the afternoons and can only manage a half day at work. I just feel lucky to be alive and have to accept the new me. Life is different.”
LIFE AFTER CANCER
"When I first had to catheterise, I could only do it at home the way that the nurses showed me with a mirror. For a whole year, I didn’t really leave the house. I had gone from so empowered with a shaved head to feeling so useless.” “After a lot of persistence, I managed to self-catheterise without a mirror and I went back to work. I was amazed at how much it lifted my spirits to be back at work and out in the world again. I am very prepared when I leave the house and have a pencil case I carry with me which has a catheter, sterilising spray and wipes.” “I started getting out and about a lot more, and we even went on holiday, although I needed a whole extra suitcase for all my bladder supplies! I had very interesting conversations with airport security explaining what the catheter was.” Now at age 61, Julie is cancer free, pain free and living life to the full.
HELPING OTHERS
“After struggling for such a long time feeling stuck at home, I am always more than happy to share my story and help others where I can. Even if it involves sharing intimate personal details with other women. If it helps them learn how to self-catheterise when out and about, then it is worth it,” says Julie. " I joined the Bladder Cancer Australia (beatbladdercanceraustralia. org.au) group and they were very supportive from the beginning when I was choosing treatment options to now giving me opportunities to offer support to others who are getting used to the 'new normal' after bladder cancer.
If you are experiencing incontinence or need support with self-catherisation skills, call the National Continence Helpline. For a FREE and Confidential Chat with a Nurse Continence Specialist. 1800 33 00 66