I think the forum is fantastic, and is quite easy to use. I'll admit that immediately after the software changed I didn't like it as much as before but I think that was simply because of CHANGE. I don't even notice it anymore and it is quite easy to use. I definitely did not mean to infer that there was any problem as far as the forum software or it's usage.
I initially came here after diagnosis looking for answers and support - I got both. I much prefer this site to others because it just seems more personal.
I also wonder how some of the bladder warriors are doing that I conversed with during my treatment (Jack for example). You statement about the PTSD hit home for me. Since I am doing well and hoping to stay that way I find myself a little more hesitant to visit as much as during treatment, simply because it brings back the memory of what/could happen again in my future. I admire you and all the other moderators who hang in there helping all of us - so thanks.
Because it seems that the number of new visitors seems down compared to several years ago if maybe things had improved in terms of new bladder cancer patients, if the ongoing BCG shortage issues were maybe resolved, or even some new treatments had been discovered?
As I get older this "new world order" that we seem to be living in makes me think of an old episode of the "twilight zone". We are confronted with so many things now in terms of everyday life and how different things seem to be in almost every part of our society that I purposely limit my exposure to the internet much more than previously - there seldom seems to be much good news and it becomes overwhelming.
Thanks again for all you and your team do - it is appreciated!
As the President it is a question that I and our board have grappled with. I just checked and on the website there are 182 what we call peepers and 1 user myself. This is a low number of peepers but it is constant 24/7. We have such a large data base that people spend a lot of time researching. We assume that most are finding what they need. Our intent was to build up a substantial data base and we have done so. Sooo, people don’t post to a under used forum they are finding what they need, but they are not getting the community, the cheer leaders they need.
We are in the middle of a redesign of the forum, with an eye to making things as simple to use as possible, and ways to grow community. We spend a good amount of money and time to help people find us but we need to do better.
I think one of the problems it that once people are through their personal crisis just want to put in behind them. While this is very understandable , if you can check in on the newbie’s once in a while it would help. If you remember It means a lot to hear you can get through this I got through it as have many others have, you’re got this. Some survivors have told me that coming back triggers some form of PTSD by their description. That I can understand and we wish them well in their healing. We have lost community now we have to find ways to get it back. We recognize the problem now we have to fix it.
T2 g3 CIS 8/04
Chemotherapy & Radiation 10/04-12/04
RC w/umbilical Indiana pouch 5/06
Left Nephrectomy 1/09
President American Bladder Cancer Society
When I was diagnosed with BC in 2016 this forum was my lifeline for information and support. It
helped me get through one of the most frightening times in my life. That
was the case for the duration of my TURBTs, Cystos, and my 24 BCG
treatments. I got far more detailed information from this forum than I
did from my Urologists and his team.
Now that I am 6 years post diagnosis and about 3 years post BCG
treatment, I can honestly say that my bladder and my mental health are
doing much better. I still have frequent urination (although much
better) and I don't think my prostate will ever be the same (that could
be age related - now 72) but I am doing so much better that I am not a
frequent visitor like I was during my treatment period.
SO....I notice that there doesn't seem to be as much participation on
the forum as was the case 5-6 years ago. Could it be that during the
Covid period (seems to have mostly subsided as a big issues these days)
the medical community was pushing a "only critical issues" could be
handled due to healthcare shortages? Has the rate of Bladder Cancer gone
down? New treatments proven more effective?
Has anyone else noticed a difference or is it just my imagination?