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Lack of available support for gall bladder cancer

Nancyjean
Nancyjean CSN Member Posts: 2
in Emotional Support #1

I have gall bladder cancer. I m a relatively new cancer patient (person, victim, target, survivor, superwoman...?)

Seems there was a forum for those diagnosed with GB Cancer on this site.  But the last post was years ago. Nothing on this site now. So have we eradicated GB Cancer?  Ans I am the lone patient up here in Canada? Highly doubtful. 

I have great friends and family support. An oncologist that I think knows what he is doing...his "bedside manner" is dreadful though...that's another story.

I have been searching for actual cancer support - connection with others in the same boat. Very hard to find. The Cancer Centre I attend has nothing. Cancer Chat Canada has a wait list.

I was rejected from an online forum that looked fantastic - but it was in the UK and they did not accept Canadians :( 

I have found a relaxation group at a cancer support agency and will try that on Friday.

When I mentioned to the oncology nurse on the health care team that I was looking for a group of other cancer patients - perhaps also taking the chemo drug I am currently on (capecitabine) - he 

looked blankly back at me. "Oh, I could look at our website." I had already done that and nothing found. Then he offered to find a focus group at the company that makes the drug...I just shook 

my head...not what I am looking for...

Anyone out there?

I am not sure how this works...is it posting rather than live chat? I just joined and am hopeful...

Cheers

NJ

 

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  • accordiongirl
    accordiongirl CSN Member Posts: 63
    #2
    Hi Nancy

    First, let me tell you that i am sorry you are dealing with this - and clearly feeling all alone.  i hope what i found for you helps somewhat.  If you go to the Discussion Boards and click on "Rare and Other Cancers" there will be some posts about Gallbladder Cancer - they look to be just 2 or 3 weeks old.  i didn't get a chance to investigate the actual posts, but wanted to tell you about them.  i hope they lead you to what you are looking for. 

    Best of luck to you.

    ~ accordiongirl

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