By Tom Eremondi
That’s one topic discussed by Bladder Cancer Canada’s Tawny Barratt and cancer survivor Angela in this recent podcast, sponsored by Coloplast Canada.
In the podcast, Angela tells Tawny she was born with spina bifida. “My spine was on the other side of my back in a sack the size of an orange. I needed surgery to fix that and there was a lot of nerve damage.”
Among other things, her brain wasn’t communicating with her bladder. “There was never a signal saying, ‘it’s time to go.’ My parents were told I would need to be catheterized every day of my life.”
With each catheter costing about $10 and the procedure needed up to 10 times a day, costs mounted. “Medical staff taught my mom how to sanitize them so they could be reused. As I got older, I would stretch out my reuse of catheters as much as I could.”
Perhaps it was the reuse, the number of times needed, or the inflammation from having to do it at all, that led to another medical issue. Angela began having frequent urinary tract infections (UTIs). “Sometimes I could flush them out with water or drinking lots of fluids, but I was also on antibiotics for years. This is something very common for people with spina bifida.”
In her late 30s, though, another health problem developed: bladder cancer. “In August of 2018 I noticed large blood clots in my urine. I immediately made a doctor’s appointment because I’d never seen that before. It was first treated as a UTI but I had chronic pain in my bladder and kidneys, so I went back to my doctor.”
A cystoscopy found bladder cancer but Angela “wasn’t really surprised. I thought I had it. It was still a shock when I found out. I was at my desk and my co-worker came in and I started crying while I was on the phone. I left work right away; I was pretty emotional, so I called my mom and dad. Because that’s what you do.”
Angela says her first prognosis was low-grade bladder cancer, and the feeling was that everything was going to be okay. Then a second cystoscopy showed the cancer was high-grade. “That’s when things kind of changed a little bit. I had surgery to remove the cancer and started BCG [Bacillus Calmette-Guérin] treatments.”
While Angela’s medical team tried to save her bladder, once the cancer became muscle invasive, the decision was made to remove and replace it with a urostomy bag. “I was a bit angry about this. I thought that my life was going to get a little bit harder, but I didn’t think it would be aggressive. I’d read about people needing their bladder removed but that was after years of fighting it. With me it was all very quick.”
Like so many bladder cancer patients, Angela was fortunate to discover Bladder Cancer Canada’s website. “I went through everything on the website; whatever I could read. I think when you have a great site, easy to navigate, for anyone who’s coming in with questions, they can easily get their answers.”
The information was useful but it was the attitude of others that helped her outlook. Angela even adopted the practice of naming her urostomy bag, choosing Peatrice. “I’ve seen other people do it so I wanted to name mine, too. It’s a fun way of looking at it and a positive spin that’s cute.”
On the Bladder Cancer Canada website, she also found information to complement medical professionals. “They’re very busy so you might not get a chance to ask all the questions. Sometimes you’re not taking it all in because it’s so overwhelming. I had information from the guidebooks and knowing that before my doctor told me meant I could follow along because I knew the medical terms he was talking about. I think that’s important.
“I’m grateful and just so happy that I came across the site. It was nice to have that connection with other people who understood what I was going through. It was nice to have one source of information that I knew was legitimate.”
BCC note: Using a catheter does not mean that you will get bladder cancer. Catheterization is widely recommended and recognized by urologists and nurses. If you need to use a catheter, it’s recommended you learn more about their use and proper sanitization.
There are currently 80,000 Canadians living with a bladder cancer diagnosis and 12,000 more will be diagnosed this year. At Bladder Cancer Canada, we are doing everything we can to increase awareness of this devastating disease to as many Canadians as possible – including this podcast that we created for Bladder Cancer Awareness Month.
Bladder Cancer Canada’s mission is simple: To support patients, increase awareness, and fund research. Please join us in making our vision a reality – a world where bladder cancer is just a memory. If you enjoyed today’s blog/podcast, help us make a difference – please consider making a donation today.
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