Facebook group for crc folks

annalexandria
annalexandria Member Posts: 2,571 Member
in Colorectal Cancer #1

Hey guys! Just wanted to let you know there is a FB group for colorectal patients and their caregivers that you might enjoy.

I am one of the admins.  It's pretty wide-open in terms of discussion (cursing is allowed, just fyi Foot in Mouth), and includes frequent links to a lot of good new research that is being published (one member is a scientist and that's kind of his thing).

This isn't meant to replace CSN by any means, just offers another way to connect and learn!

The group is called Colorectal Cancer Survivors Unlimited.  It is a Closed group, so just send us a request to join if you want to take part.  You do have to have a FB account to participate.

 

AA

Comments

  • KathiM
    KathiM Member Posts: 8,028 Member
    #2
    FANTASTIC!!!

    There is also a CSN facebook group, and a group called Colontown, which is exclusively for colorectal cancer, as well as Colonpalooza being there, too...

     

    The more the merrier, I always say!!!

     

    Hugs, Kathi

  • NewHere
    NewHere Member Posts: 1,428 Member
    #3
    Ω@%$&^$&$T YEAH!!!!

     It's pretty wide-open in terms of discussion (cursing is allowed, just fyi Foot in Mouth),

    I may drop a note for it at some point

  • beaumontdave
    beaumontdave Member Posts: 1,289 Member
    #4
    I goldarnfrickingadagnab like

    I goldarnfrickingadagnab like it!

  • JanJan63
    JanJan63 Member Posts: 2,478 Member
    #5
    I was on two of them until

    I was on two of them until another member totally pi$$ed me off and then I left both groups. I found there wasn't at all the warmth there is here and there was a lot of posts about supposed cures and preventatives that annoyed me. I get enough on my facebook without 20 or more new posts a day, usually with nothing of any value in them. I was also on an ostomy page but left that, too, after one too many pics of nasty ostomy issues.

    Jan 

  • annalexandria
    annalexandria Member Posts: 2,571 Member
    #6
    JanJan63 said:

    I was on two of them until

    I was on two of them until another member totally pi$$ed me off and then I left both groups. I found there wasn't at all the warmth there is here and there was a lot of posts about supposed cures and preventatives that annoyed me. I get enough on my facebook without 20 or more new posts a day, usually with nothing of any value in them. I was also on an ostomy page but left that, too, after one too many pics of nasty ostomy issues.

    Jan 

    We tend to limit

    the "selling" of so-called cures that have zero evidence to back them up...the group is definitely all about being evidence based, and when alternative stuff comes up, it gets discussed pretty carefully (and debunked when appropriate).  So feel free to try us if you want to take another shot at a FB group!

  • JanJan63
    JanJan63 Member Posts: 2,478 Member
    #7
    annalexandria said:

    We tend to limit

    the "selling" of so-called cures that have zero evidence to back them up...the group is definitely all about being evidence based, and when alternative stuff comes up, it gets discussed pretty carefully (and debunked when appropriate).  So feel free to try us if you want to take another shot at a FB group!

    I'll check it out, thanks!

    I'll check it out, thanks! The last one I was on when I mentioned that I was NED a member got all angry with me because her husband isn't going to make it. We got into quite a tiff. She suggested that if I didn't want to see any more posts about supposed cures I should take myself out of the group and I did.

    Jan

  • John23
    John23 Member Posts: 2,122 Member
    #8
    Social Media……

    Social Media……

     Odd they call it that, when it usually becomes so anti-social.

     

      Long live CSN.

    (where everyone is welcome)

     

    (“You don’t know how good you got it, ‘till you don’t got it”)

     

    Be well, ya’ll !!

            John

  • Unknown
    Unknown
    #9

    Hello, I logged into Facebook, navigated to the group, and clicked on the join button. The instructions say to include an explanation, but I am unable to find a place for that. Should I message you through FB?

  • annalexandria
    annalexandria Member Posts: 2,571 Member
    #10
    unknown said:

    Hello, I logged into Facebook, navigated to the group, and clicked on the join button. The instructions say to include an explanation, but I am unable to find a place for that. Should I message you through FB?

    Hi there!

    Yes, you can message me or Kenny a brief overview of your cancer experience.  We ask for this because we've had quite a few fake profiles joining the group, and we've found that the fakes don't usually bother with a reply.  Thanks!

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