I\'m Baffled

12 years 10 months ago #38158 by sara.anne
Replied by sara.anne on topic I\'m Baffled
Pat, many people do not feel comfortable posting "private" matters in public. But MANY do gain a lot from reading what others write. I also know that many people contact Cynthia individually, using the "contact us" toggle under "Support."

For myself, I gained so much knowledge from you and others on this Forum when I was first diagnosed. That is why I (and I know you, especially) try to respond whenever we feel it can be helpful.

Sara Anne

Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
Forum Moderator

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12 years 10 months ago #38157 by mamatrausch
Replied by mamatrausch on topic I\'m Baffled
Pat
Im not sure why others dont post but I can tell you I dont reply to all the posts unless I have had experience with the subject.(as I am only 8 months from RC)
I do reply for encouragement to others.
I wish more people would post with all types of questions.
It is informative, fun and lets me get to know the people on this site better. I dont know what the answer is just thought I would share.
Julie

T1/G3-CIS 10-01-2010
10-27-2010-Indiana Pouch

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12 years 10 months ago #38156 by Patricia
I\'m Baffled was created by Patricia
First let me say this...I believe this is one of the most up to date informative sites on bladder cancer since web/cafe yet i will see 30 guests and no postings or some number comperable to that. Why are they not posting? Are they getting the info they need without having to post? Is it too confusing to post?
As an exercise in going to another site which I shall refer to as the TwitterBladderCancerSite......there will be 59 respondants to "When can i have crazy Monkey sex" or some nonsense category ...not that crazy monkey sex isn't an interesting concept...but the point is they are responding. Maybe we need to have to sign in before we can read posts...thats what they do and then maybe more likely to comment. ??? Just pondering. Anyone got any answers or maybe noone will read this one? I had one old poster say to me the other day that she just doesn't bother anymore because noone answered her. And that does bother me as she is fighting a recurrence of TCC in a most unusual case of it having popped up in her scar area and was discovered by punch biopsy. So it was on the skin...ever hear of that one? I hadn't.
She's undergoing another rigorous round of Gem/cisplatin and responding but grueling.
Pat

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