Cynthia--
That was extremely well put, and I hope those who have been reluctant to post will do so. My blc is in the category of non-invasive and low grade, but I found this forum and started posting just recently when I had a recurrence. Therefore, I agree with you that those who post are in some ways a self-selected bunch and don't necessarily represent the full gamut of bladder cancer survivors. Truthfully, I still don't have my head around the notion that I'm a blc survivor.
The other day I was driving somewhere by myself for a couple of hours, listening to nice classical music, and getting extremely melancholy, thinking about my children, future grandchildren, leaving everybody, etc. I realize that one of the things making me melancholy was that I've been reading in all the threads, invasive, metastatic, etc. I don't know how many others are like me, but I tend to over-research on medical issues (for anyone I know, not just myself). I prefer to know what might be in store, even if it's unlikely. I now realize that I may have been putting an undue burden on myself by reading all the threads so closely. For those of us with non-invasive and/or newly-diagnosed blc, maybe it would be better to focus our posting and reading more on "our" threads, and the types of worries and questions and feedback we can offer to those who are at the same point in the bladder cancer "journey." Fortunately, many of us will never move to one of those other "roads" down which others here have traveled or are traveling. And the folks with invasive blc likewise may not want to dwell in the land of the mestastatic just yet.
I've posted in the past on the ACOR blc e-mail list, and, while I like the set-up here better than there, some of the new folks here might want to look into that venue as well for posting questions and concerns. I know some of the people here are on there as well, including you (Cynthia). In fact, I think I found this site from something posted in the ACOR list.
Keep up the good work--you're doing a great job, and are addressing people's concerns very quickly as they come up.
Ann