Closed Facebook Groups for treatment updates etc

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Annanza
Annanza Member Posts: 9
edited July 2019 in Stage IV/Metastatic Breast Cancer ONLY

I'm thinking about creating a closed Facebook group (primarily for family in New Zealand and very very close friends). I thought it might be an efficient way to keep people updated on my cancer journey. Have any of you tried this? Thoughts? Pros and cons? Love to have any kind of input before I decide to do (or not do) this. Thanks!

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  • LoveFromPhilly
    LoveFromPhilly Member Posts: 1,308
    edited June 2019

    Hi Anna,

    That sounds like a good idea if it feels good to you?

    Some people do that, or write blog posts, or emails. I am on a Whatsapp group with my friends and family and I can, if I am in the mood to, send a message on there to update folks. In fact, I just did, from my monthly MO appt this morning.

    They appreciate knowing what’s happening and it gives them a chance to reflect and ask questions. And it gives others a chance to answer for me and by my advocate if I don’t feel like answering.

    I guess my only thoughts are (being an ex-Facebooker myself), is to ask yourself if you have the energy for something like this and if you really want to commit to it?

    When I was first diagnosed, I had my mom and my best friend be my spokespeople. I sent anyone who had questions their way and they handled it for me until I gained the strength and energy but mentally and physically to want to participate in these kinds of convos. They can, for some people, be quite exhausting and can be re-traumatizing!

    So, I would just say, carefully think through your decision here :) and do what will truly make you happy. You have enough to deal with already...

    Hugs!

    Philly

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  • jensgotthis
    jensgotthis Member Posts: 937
    edited June 2019

    I have a private FB group that I invited the folks I wanted to keep in the loop to join. It's worked great for me and for them. I usually update after scans or major appointments. It's been a nice source of support and very user friendly.

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  • Moderators
    Moderators Member Posts: 25,912
    edited June 2019

    If we were able to offer private forums, do you think that would be a good alternative for some?

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  • LoveFromPhilly
    LoveFromPhilly Member Posts: 1,308
    edited June 2019

    mods I think so

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited June 2019

    I don't like the idea of Facebook having so much of my health information. As it is, when I was starting treatment and googling a lot of things, I was bombarded with Facebook ads about breast cancer and cancer in general. I was also messaging my sister from my phone, through SMS **NOT** FB messaging but I have the FB app on that phone - and we were both getting the cancer ads! I purposely didn't use Facebook messenger but I think putting the app on your phone gives them permission to read messages and contact info.

    Mods, that might be helpful and preferable to Facebook.


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  • JFL
    JFL Member Posts: 1,947
    edited June 2019

    Mods, I think a private group would be helpful. Or at least a group where the posts do not show up in Google and other search enginges. It is one thing if people have to dig to get into the boards but another if they show up on Google. I find when I am Googling my existing BC predicament at a given time (e.g., information about a trial drug I recently took or the uncommon drug combo I am currently taking), I keep coming across posts that I just posted in this site or various posts because of what I put in my signature. It is a bit disturbing! :)

    Annanza, I know a lot of people in Facebook groups that have had a great experience. The only thing keeping me away is that very few family members and friends know about my mets dx and having a closed group listed on my profile would king of give away that I have mets. Although with a closed group, no one can read the posts, one can see if a Facebook member is a member of the closed group. I need a hidden group!

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  • Moderators
    Moderators Member Posts: 25,912
    edited June 2019

    Everyone, we really appreciate your thoughts on this! Thank you.

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  • hausla01
    hausla01 Member Posts: 7
    edited July 2019

    I know this is a late post, but maybe it can help someone. I use the Caring Bridge website to update family and friends with medical news. It reduces my stress of feeling like I have to call people after appointments and I hope it saves my mom from some phone calls, too.

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  • jensgotthis
    jensgotthis Member Posts: 937
    edited July 2019

    I like the private forums here but how would one find it?

    I’ve found it very uncomfortable to see BCO posting and linking to threads on Facebook. I realize this is a public access site, but social media pushes feel weird to me

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