I was diagnosed with high grade, muscle invasive bladder cancer in September 2006. Like most people, I had never heard of bladder cancer, so it is not surprising that I was completely unprepared. Truth be told, I was scared and confused. I sought answers to very difficult questions: What would my life be like without a bladder? Without a prostate? With a neobladder or an ileal conduit or an Indiana pouch? And how would I choose between them? My medical team tried its best to answer those questions, but could only go so far. They acknowledged that, like bladder cancer itself, the experience of being a bladder cancer survivor was not well studied and that my questions were best answered by the experts, the survivors themselves. Though I tortured Google for answers, the silence was deafening.
It was not very long before Google had something to say. One year after my radical cystectomy, in November 2007, the BCAN Inspire web community was launched. Bladder cancer survivors, partners, caregivers, family, and friends finally had a place to get answers to the questions that I had asked; to ask other questions like them, no matter how personal; to share good news and bad; to offer tips and tricks that make life as a bladder cancer survivor easier and more complete; and to give and get comfort during difficult times.
I have been an active participant of the BCAN Inspire community for over five years now and have been excited to watch the community grow and mature. As of August 2014, we are over 10k strong! This dynamic group of very capable and wonderful people want what I want: to make the lives of those impacted by bladder cancer less scary, less confusing, easier. I think that we succeed.
The theme line for the BCAN Inspire web community is “Together, we are better.” After five years as a member of this incredible community, I can tell you that this is more than just words.
To join the BCAN Inspire Web Community, go to https://www.inspire.com/groups/bladder-cancer-advocacy-network.