Keeping in touch

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Trubrit
Trubrit Member Posts: 5,796 Member
in Colorectal Cancer #1

I have wondered about this several times over the 18 months I have been a 'friend' on this forum, about how sad it is when one of our 'friends' passes and we have no way of finding out. 

The first time I thought of this was when LoveKitties did a search and found out that Vickilg had passed away. 

I have three freinds from this forum who are on my Facebook page, and if anything were to happen to me, they would find out there. But I know that not everyone has a face book page. 

As I read the thread started this-morning by Jen, enquiring after alexinlv and maxiecat, it saddened me to think that people, especially those who have posted many times here, slip away unbeknowst to us. 

So, any suggestions on how we can keep in contact other than on the forum. 

- I have a FB page and would happily keep you in my friends list, and I would also share my email through private message. 

Comments

  • Semira
    Semira Member Posts: 381 Member
    #2
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    if you like...

    to add me... look for Petra Meyer 148 and you should find my page on FB.

    Good to keep in touch..m

    Petra

  • Hopeful0524
    Hopeful0524 Member Posts: 22
    #3
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    Thats very thoughtful of you

    I'm quite new to this site, so I don't know too many yet, but I've noticed those that have a prominent presence.  I haven't even told my friends yet about my situation, so I'm not quite sure to mention FB yet.  But hopefully your idea grows. 

    Thanks for being thoughtful,

    TS 

  • Lovekitties
    Lovekitties Member Posts: 3,364 Member
    #4
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    Always an issue

    Here on the board we have always faced this issue and also one about folks having major procedures and not knowing their status for mnay weeks.

    Unfortunately, folks are reluctant to share how you can get in touch.

    I would ask that each person find a special trusted friend or relative who could come here to pass on news if it ever becomes necessary.  That way their privacy is protected, but we still have a chance of getting information about our friends here.

    Marie who loves kitties

  • Steph19877
    Steph19877 Member Posts: 20
    #5
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    Lovekitties said:

    Always an issue

    Here on the board we have always faced this issue and also one about folks having major procedures and not knowing their status for mnay weeks.

    Unfortunately, folks are reluctant to share how you can get in touch.

    I would ask that each person find a special trusted friend or relative who could come here to pass on news if it ever becomes necessary.  That way their privacy is protected, but we still have a chance of getting information about our friends here.

    Marie who loves kitties

    My facebook page is Steph

    My facebook page is Steph Biggin - please add me. I'm sure I have will lots to share / ask over the coming weeks after my mum had APR surgery yesterday

    thanks steph 

  • lilacbrroller
    lilacbrroller Member Posts: 412 Member
    #6
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    Steph19877 said:

    My facebook page is Steph

    My facebook page is Steph Biggin - please add me. I'm sure I have will lots to share / ask over the coming weeks after my mum had APR surgery yesterday

    thanks steph 

    notifications

    I've friended a few people outside CSN, and have PMed several w/in CSN over the years. 

    I've thought about my end game and CSN, and have decided that if I go into hospice and have a prolonged death, I'll take care of things myself. Otherwise, I'll have my brother notify everyone and post something here.

    I've left a lot of info on this board that I hope is useful to future users, and to solve the post mortem chat problem, I'm going up change my photo/avatar to read "deceased", as if it were stamped, and then my years of life.  Hopefully new members will figure it out and won't bump up my old posts and expect me to answer their questions!  CSN moderators usually delete the profiles of dead people, but I might have my family insert a little paragraph on my profile in case they don't.  

    so that's my exit plan for this space anyway. 

    cheers

    Karin

  • CSN_Rowan
    CSN_Rowan Member Posts: 87
    #7
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    lilacbrroller said:

    notifications

    I've friended a few people outside CSN, and have PMed several w/in CSN over the years. 

    I've thought about my end game and CSN, and have decided that if I go into hospice and have a prolonged death, I'll take care of things myself. Otherwise, I'll have my brother notify everyone and post something here.

    I've left a lot of info on this board that I hope is useful to future users, and to solve the post mortem chat problem, I'm going up change my photo/avatar to read "deceased", as if it were stamped, and then my years of life.  Hopefully new members will figure it out and won't bump up my old posts and expect me to answer their questions!  CSN moderators usually delete the profiles of dead people, but I might have my family insert a little paragraph on my profile in case they don't.  

    so that's my exit plan for this space anyway. 

    cheers

    Karin

    Hi Karen,
     
    I'm one of the

    Hi Karen,

     

    I'm one of the members of the CSN Support Team, and I just wanted to let you know that the profiles of deceased members are not deleted, they are blocked to prevent the accounts from continuing to be used by family members or spammers after death. This means that the person's posts remain accessible to future readers, but no one can make new posts with the account. If a family member posts in that person's name to let people know that they are deceased, we leave that up.

    We appreciate your valuable posts over the years and definitely want them to remain available for future readers! 

    Rowan

    CSN Support Team

  • Lisa2012
    Lisa2012 Member Posts: 142
    #8
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    You amaze me

    Sue,

    You are one of the most caring people that I know.  Thank you for bringing this topic up for discussion.   I don't have any ideas or a plan, except that I plan to be here for a long time.

     

    lisa

     

  • Trubrit
    Trubrit Member Posts: 5,796 Member
    #9
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    Lisa2012 said:

    You amaze me

    Sue,

    You are one of the most caring people that I know.  Thank you for bringing this topic up for discussion.   I don't have any ideas or a plan, except that I plan to be here for a long time.

     

    lisa

     

    Thats the kind of plan I can live with

     I don't have any ideas or a plan, except that I plan to be here for a long time.

    Thank you, Lisa. I like you plan, it is the best. 

  • Helen321
    Helen321 Member Posts: 1,459 Member
    #10
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    Hopeful0524 said:

    Thats very thoughtful of you

    I'm quite new to this site, so I don't know too many yet, but I've noticed those that have a prominent presence.  I haven't even told my friends yet about my situation, so I'm not quite sure to mention FB yet.  But hopefully your idea grows. 

    Thanks for being thoughtful,

    TS 

    I never put my cancer on

    I never put my cancer on facebook.  I don't need people from my elementary school knowing anything except that I find silly memes funny and like to think I'm funny.  I do howevr have Trubrit on my facebook.  People just send emails instead of posts so that you can still be private.  Gives everyone a chance to see more than just one picture too and that we're more than just someone with cancer.

  • Helen321
    Helen321 Member Posts: 1,459 Member
    #11
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    Lisa2012 said:

    You amaze me

    Sue,

    You are one of the most caring people that I know.  Thank you for bringing this topic up for discussion.   I don't have any ideas or a plan, except that I plan to be here for a long time.

     

    lisa

     

    I think this is the absolute

    I think this is the absolute best response Lisa! I plan on being right here with you!

  • Trubrit
    Trubrit Member Posts: 5,796 Member
    #12
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    Helen321 said:

    I never put my cancer on

    I never put my cancer on facebook.  I don't need people from my elementary school knowing anything except that I find silly memes funny and like to think I'm funny.  I do howevr have Trubrit on my facebook.  People just send emails instead of posts so that you can still be private.  Gives everyone a chance to see more than just one picture too and that we're more than just someone with cancer.

    I'm an open book

    I put it all on Facebook. My birds, my kids, food, my colonocopy results..... no, not the pictures. HA!

    Its an individual thing, and I respect what others do and do not want on their FB page. For me, because I find that people are pretty ignorant about what the cancer journey entails (as I was before I got it), I like to share the ups and downs. Once, when I looked like absolute crap while doing chemo, I posted a video of myself. If anything, it frightened people, cause nobody came around to cheer me up. 

     

  • Phil64
    Phil64 Member Posts: 838 Member
    #13
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    Trubrit said:

    I'm an open book

    I put it all on Facebook. My birds, my kids, food, my colonocopy results..... no, not the pictures. HA!

    Its an individual thing, and I respect what others do and do not want on their FB page. For me, because I find that people are pretty ignorant about what the cancer journey entails (as I was before I got it), I like to share the ups and downs. Once, when I looked like absolute crap while doing chemo, I posted a video of myself. If anything, it frightened people, cause nobody came around to cheer me up. 

     

    I guess I'm pretty open

    yoiu can access my blog at http://PScamihorn.me

    This is a public blog.  And I have posted something for pretty much every stop of this journey.

    You can find me on FaceBook as Philip Scamihorn.  And if you send me a friend request please let me know you are one of my CSN friends.

     

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