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Hi,
After being in denial for over a month I’m finally able to reach out. I’ve been reading posts and everyone is so encouraging!
My symptoms started July 2019 when I had hematuria and I went to the clinic next day and they told me I had a UTI. I didn’t even think anything of it. But, I started having burning off and on and each time I’d go back to the dr and they kept telling me I had a UTI, even though I’d go back and tell them the antibiotics weren’t working. After two weeks of antibiotics in March, 2020 and no relief I went to a new Dr. and I was starting to have pain in my left side. She sent me for an ultrasound which found a tumour in my bladder. I’ve never been in so much shock in my life. 3 days later I had a CT, which confirmed exactly what the ultrasound said, I had a cystoscopy a few days later and a TURBT a week later. Pathology is muscle invasive high grade utothelial ca. 🙁 I start neoadjuvent chemo next week and with have a RC in the fall. I have never been more terrified in my life. I’m a single Mom to an amazing 16-year-old and I am so scared.
Karen
Hi Karen,
I had a RC seven months ago and it went very well. Extremely impressed by the quality of care and compassion of the surgeon, nursing staff, et al. Five days in hospital to ensure everything was working well, then home to learn how to live with my neobladder. That’s going well also. A recent CT and blood tests showed no signs of any lingering cancer. Building my strength and stamina back up weekly and have been golfing three time a week since the courses opened.
Wish you all the best for your treatment and surgery. I know all will go well for you.
Don
Hi kjc18:
As a mom of 4 who has dealt with bladder cancer twice, I can tell you I understand what it is like to be scared – scared of the impending surgery, scared for our kids, scared for the unknown future etc. etc.
While I did not have to undergo a radical cystectomy, I still had a lot to cope with having surgery and BCG treatments. My youngest son was having serious health issues of his own at the same time. It was overwhelming to have to handle both his needs and my own. I found reaching out to others really helped with putting things into perspective. If you haven’t already done so, I recommend contacting BCC at their toll free number and ask to be connected with a female peer support volunteer who has been through the surgery. This way you can get the low down and the tips and tricks on what to expect.
I connected with others that had done BCG treatments and I know that I felt a lot better when I learned what to expect. All the best going forward. (((((HUGS))))
Hi kjc18,
Your story is very similar to mine. I am a 48 yr old female and I am currently recovering from RC which I had on June 18th. My chemo was from February to May. Not fun at all, but I got through it and my CT scan after it showed no evidence of cancer (yay!). As I said, my RC was done on June 18th. I was in the hospital for a week, then home with several tubes/catheters to care for. Three days after being home, I was admitted to hospital again with complications with pain and bowel issues. I was in for 8 days. I am home now and am fortunate to have a caring husband and teenage kids to help out. You will need some help with things like meal prep and house cleaning. You may want to stock up on easy meals or frozen meals that you can just pop in the oven or microwave. If you have friends and/or family who ask how they can help, meals and cleaning is what I personally would ask for.
As for the fear, I’m not sure there is any way around that, but if it gets too much, I would seek help/counselling of some sort. You will get through it. It will seem like a long haul, but not all days will be bad. It’s a little different navigating all of this with COVID, so make sure you make sure to keep in touch with friends and family as much as possible. ‘
If you have any questions, don’t hesitate to ask.
Hi kjc18,
You should check to see if there is a Support Group available in your area by going to the BCC site https://bladdercancercanada.org/en/get-support/ I run the Hamilton Group and we are now using Video Conferencing to communicate. The folks who attend are very helpful and are willing to share their experience and help answer non-technical questions.
My best,
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