I\'m Baffled

Thanks, Pat, the compliment coming from you means a lot! Hope this finds you well. Carla

I am a relatively "new" member to ABLCS, and I can say that I was a "lurker" before I signed on. I found out about my BC and didn't have anywhere else to go except the net. MY Uro was great, and a huge wealth of info about procedure, but not so much with after care and LIVING!!! The first site I found was pretty wide open with regard to ostomies and diversions and had some info, but too much that didn't apply to me to weed thru. Google search brought me to ABLCS and WOW! exactly what I was looking for, specific to my situation and EVERYONE was helpful. Lurking af first gave me the security to know that this wasn't going to be another so-so site. I could feel that my time was well spent and I was getting good info. I learned a lot and found new ways to live with an indiana pouch that wasn't going to make me feel less than human and break the bank buying supplies that I could find elsewhere.

This website was the first one that really gave me a sense that it was going to be OK, statistics are scary for BC and so clinical and impersonal that you can't help but be scared and thinking the worst. Even those on this site who are struggling and having a hard time finding care and getting thru the HUGE physical and mental blow of hearing a BC diagnosis are upheld by others who have come before and know what it's like and can say it's going to be OK, and you feel you can believe them. My husband and parents and family all told me, "It's going to be OK", and you want to believe them so badly, but you know that it's their wish and prayer and not a 100% truth. HEaring about everyone here who has gone before me and dealt with BC and cared for someone with BC and had problems and still made it was a great stregth for me to lean on. If they could do it I could do it!!

I hope that those lurking, keep lurking until they feel safe enought to come into the group and tell us what they need and share what they've been thru and we can tell them, "the worst is over. It's going to be OK. you will make it." Even if they're lurking, they're still getting the messege and maybe even pass us along to someone else who needs this site and joins right away. Someone will always be standing on the sidelines not quite ready to join the parade. That's OK, at some point they may be our biggest supporters. My mom always told me it's the quiet ones you have to watch out for - maybe in this case that's a good thing and something to look forward to.

MEdicine is a great science but there is a long way to go to bring BC to a level of other cancers. I'm still explaining my BC and Indiana pouch to too many medical professionals that are in the urology section and DON'T KNOW SQUAT!! It's up to us to make this a known cancer and fight for better information for medical professionals and better testing for earlier detection. Let the lurkers be, they'll come around.

Like everyone else I don't know the answer why so many people come on the site and look but don't post. I do know that I may have been just a reader for a while too. But there were two things that got me hooked on the site, besides just needing advise. The first was that when my wife Judy and I went to our local hospital cancer info desk, the info they had on bladder cancer was ten years outdated. We even had to explain to the lady
what bladder cancer entailed. It was easy to see we needed a lot better info. So the web was the next place to turn. This site was not the first i visited, but it was the first I posted on and where I felt comfortable. How do we get more visitors to post, I can,t say. What I can say is, and I think I like a few other have somewhat of a unique view because of the fact I had went through two previous cancers twenty and ten years prior to bladder cancer. For me at least doing those times everything one had to go through was a whole new experience. Each problem or question I had, there was no one to turn to. I never new if what i was going through was normal or not. Like most men I don't like to ask for help, didn't want to rush to the doctors or hospital and some times waited way to long to do so. With bladder cancer this site changed all that. I have said many time that having this site to go to was like having a road map, or by todays standard a GPS. By reading others history before my surgery I was able to know what to expect. What was normal and what was a red flag. It also made it very easy to see that others had been there, done that and they were ok. If I couldn't find an answer to my questions, I now had great people to ask! I don't know of a much better compliment then that, That i can give to Cynthia, others on here, and this site. And maybe just in saying that, it is part of the answer to the original question. Maybe the site is so good, so successful that they can get all the info they need just by reading. I myself worry about over posting, putting my two cents in when they are not needed, or not knowing when to shutup. Like Now!
Maybe we need to tell visitors up front how important it is to the site that they post and explain to them that we can be their road map through this journey. If there was a page on the site made up specifically to be copied and posted in each of our urologist offices and in our hospitals cancer info area to help direct people to the site???
Duke

Heck..i know some Uro's who don't know as much as you do Carla about Bladder Cancer. I remember after my surgery and i was home with all those tubes in me and i went to see the local uro for follow up and he took one look at the Zombie i appeared to be and said, "I don't know what the heck any of those are"... OK back to Cleveland.
pat

See, George, you have me smiling again! Thanks for today's pat on the back and laugh. I am sure your wonderful wife Audrey has been there for you just as I have been for Jim. It's what we should be doing for our loved ones! There have been times when I was the one who was ill, mind you nothing like this thankfully, and Jim never waivered...ever! That's what you do for someone you love with all your heart and soul.

I appreciate so much what so many of you all have done to help me through all of this. 7/6 is Jim's next appt (just 1 week shy of his initial dx) and we are hopeful for another..."all clear" report on blood work and his CT.

I knew it! I knew it! Carla was my other choice! Beautiful indeed.

I know You have "been there" for Jim. Audrey was there for me too. But, While we have been there for Jim.... We have also been there for you. Now I(we all) am happy to know you too.

George