We are honored to work with Jonathan to share the story of his bladder cancer diagnosis. Through months of cystectomies, surgeries, cystoscopies and finally, BCG treatments, Jonathan decided to capture the ups and downs of his cancer journey and through his writing and photography, patients and others in his life could get a glimpse into his experiences from his perspective.
Jonathan’s story is his own personal experience and may not reflect your own diagnosis and treatments. As always, remember that stories shared on Jonathan’s site, the Bladder Cancer Canada blog, podcast or elsewhere are not a substitute for professional medical advice or treatment. The content on Jonathan’s site are the personal views of the writer and is for information only. Always consult your physician and do not rely on information you find on the internet when making decisions about your health.
The day for Jonathan’s first BCG treatment arrived and had Jonathan feeling very panicked. Bacillus Calmette-Guerin (BCG) is a weakened form of the tuberculosis bacterium which stimulates immune responses within the bladder to destroy the cancer cells.
“Since the treatment itself has a host of negative symptoms associated with it, and being a live virus, you have to be very careful for at least a day afterward so you don’t infect yourself or others around you,” says Jonathan. “As a precaution we setup our basement bathroom for Mandy to use and I would be the only one using the main bathroom after I received my BCG treatment.”
At the hospital, the nurse approached Jonathan with the BCG solution. She was wearing a full gown, a mask and a full-face shield. The syringe had a big red bio-hazard sticker on it, which contributed to Jonathan’s feelings of anxiousness.
BCG is injected through a catheter and because Jonathan had already been through so much already and was swollen and sore, the first attempt to catheterize him failed. The nurse offered to have someone with more experience attempt the catheterization and she, too, had no luck. “Keep in mind each attempt was making things worse and unbearably more painful,” says Jonathan. “Each nurse had tried several times with no success. Now my only option was to skip this treatment, or have my urologist come and do it. We thought for a bit and agreed to try yet again.”
Jonathan’s urologist was in surgery at the time, so Jonathan had to wait for a gap in between surgeries. “When a gap opened up, the nurses realized the BCG solution had expired, and the pharmacist had to mix a new batch,” says Jonathan.
“We sat and waited. Finally, the stars aligned, and it was go time. The doctor used a special tip on the tube to help things, but it also caused more pain. He managed to get the tube in, but it was the first and only time I yelled out in pain while in the hospital. Not only was I dealing with pain, but my mind was jumping forward knowing I had to do this five more times. To help calm me down, the urologist gave me an Ativan. It didn’t ease the pain, but it made me care about it less.”
Jonathan experienced a burning sensation as the BCG solution was injected but it felt manageable. Once it was injected, Jonathan needed to let the liquid coat his bladder – this was done by changing his position every 15 minutes. “Stomach, left side, back, right side,” says Jonathan. “This made sure the solution coated my entire bladder surface. Mandy kept the timer going so I was able to close my eyes and try to relax.”
The first void of the bladder after BCG treatment is usually done in the hospital but because of the delays in getting his catheter in, Jonathan was told that he would need to void at home since the department was closing for the day.
“At home, we set me up in the bathroom. I had a blanket and a pillow and my trusty space heater to provide warm soothing air,” says Jonathan. “I had to drink as much water as I could, and every time I went to the bathroom, I had to wipe everything down with bleach. The instructions said use a diluted solution, but I went full strength. Peeing was excruciating – it was as bad as it was after my surgeries. I started to wonder if I was ever going to be able to pee again without wanting to put my fist through the wall. We didn’t want any cross-contamination, so Mandy would pass food to me but I wouldn’t leave the bathroom whatsoever.”
After six hours, the virus coming out was mostly inert. Jonathan wiped everything down, took a shower and put the blanket and pillowcase in the washing machine. He emerged clean, but completely exhausted. The countdown had begun; he’d receive five more rounds of BCG in an effort to keep his bladder cancer from returning.
You can listen to Jonathan talk about his BCG experience on our upcoming podcast along with Dr. Zlotta, member of Bladder Cancer Canada’s Medical Research Board and Professor in the Department of Surgery (Urology) at the University of Toronto and Director of Uro-Oncology at Mount Sinai Hospital.
The podcast will go live on Friday, May 27th,2022.
If you See Red, See Your Doctor
Early detection of bladder cancer is critical to preserving the bladder and protecting the quality of life for bladder cancer patients. The most common symptom of bladder cancer is blood in the urine, and unfortunately, this symptom is not always taken seriously. Medical attention is not always sought – particularly for women, who think that this blood could be related to their menstrual cycle. Other symptoms of bladder cancer include:
- The need to urinate often
- An intense need to urinate
- Trouble urinating
- A burning sensation or pain during urination
- Back, pelvic or groin pain
Waiting for and receiving a cancer diagnosis can be an extremely frightening and isolating experience. Many people share how alone they feel during this time, because others around them can’t relate at the same level. Support services are extremely critical during this time and BCC offers several free services through our website including a discussion forum, a peer support program (where patients talk one on one with other patients), online support groups, educational webinars, downloadable patient guidebooks and more.
All of these services are available for free at www.bladdercancercanada.org.
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