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FB Communication?

Bonngo's picture
Bonngo
Posts: 79
Joined: May 2012

Was wondering what the thought was out there of starting a FB page for our group?  I find that I do not log in here as much as I would like as it is a bit cumbersome and I get lost following the threads sometimes.  I think a good percentage of people are on FB every day.  Your feedback is appreciated!

Srashedb
Posts: 482
Joined: Dec 2013

there are a few FB pages for kidney cancer but I don't find much substantial info there. 

This forum has a decent exchange of info, support and feels like family.

those are my thoughts 

Sarah

icemantoo's picture
icemantoo
Posts: 3235
Joined: Jan 2010

Bonngo,

 

There is a Kidney Cancer Survivors FB group with about 2800 members. Other members of this board as well as myself post in that group as well. You lose your privacy as it is connected to your FB page. There is no bio information so ou know little about the other poster except what thay put in a post. There are many more replies then here and most of them are very basic. It is harder if not impossable to retrieve earier posts. There is also a FB group for the Kidney Cancer Association. I stay away from that as it is used to diseminate right wing political commentary from the Heritage Foundation and Forbes magazine and any disenting views are removed as well as diseminating  the personal right wing views of Wm Bro the COO of the Kidney Cancer Foundation.

 

 

Icemantoo

Bonngo's picture
Bonngo
Posts: 79
Joined: May 2012

Ok scratch that idea.  I will try harder to log in order to participate in helping others as I have received abundance of support when needed.  

Srashedb
Posts: 482
Joined: Dec 2013

I didn't mean to discourage you from FB; I have checked out the groups. As for privacy, you can make it private in your settings.

very glad that you are making an effort to stay here because you will find support as well as give it. This has been said before but this a family.

for medical information that is more advance, I would also suggest Smart Patients; there is lots of info but it can get overwhelming at times. 

Sarah

Positive_Mental_Attitude's picture
Positive_Mental...
Posts: 454
Joined: Jul 2014

I know many people who are adverse to posting on FB.  I have an account, but I rarely post or "like" anything.  To me FB has too many strange privacy and tracking issues.  Also, I do not want to share with the world that I had cancer.  Very few people in my life know about it.  I'm not trying to hide it, but I don't want it on my Facebook page.  As others have said, there are private groups, and I belong to one not related to kidney cancer, but I never participate because I only log onto FB once every few months or so.

APny's picture
APny
Posts: 1956
Joined: Mar 2014

ITA about the privacy issues. Nothing is private. Regardless of how you set your account. So I simply deleted mine years ago and guess what? I survived without it just fine.

Footstomper's picture
Footstomper
Posts: 1238
Joined: Dec 2014

I know of too many teachers who have lost teir jobs for posting innocent stuff on FB which is then taken out of context or blown out of all proportion. I know of one who lost her job over a picture of her on a beach dinking beer in the sunshine.

Avoid like the plague

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