Like you I have suffered the consequences of radiation, in my case for ovarian cancer. I have found that the care for these consequences seems minimal compared to what is provided in the UK. I found an amazing support group, Pelvic Radiation Disease Association that I wish was available here. They provide a comprehensive booklet entitled "managing the bladder late effects of pelvic radiotherapy" that is available online for free from their website, click on their Resources tab. Mayo won't let my share the link in this comment.
Perhaps that can guide your efforts.
I agree that life is too rich to focus on one issue. Every day we breath is a gift.