Contact info in case something happens.

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JWoo
JWoo Member Posts: 1,171
edited August 2014 in Members by Location

Hi ladies and gents. - SEE EDIT****

I hope this is okay with the mods. 

With the recent loss of a dear BCO sister, and the MIA of a few, I thought it would be a good idea to keep a contact list for those of us that are interested. I don't mind keeping the list of whatever info you want to provide and making contact so that should something happen, or you go MIA for too long, your family here can get whatever message you want to convey. I will be providing my email address to whoever PM's me that is interested, again for when you or your loved ones want to provide info to your BCO family.  It can be your full contact info, just your email, a phone number, whatever you are comfortable with. I will have one back up person that has this info (yet to be determined) and we will of course never share your contact info unless you wish it, and will not post it in a public forum, nor will it be shared outside of the BCO community. I know there are thousands of us world wide, and it will be a big task, but I know that without all of you, I would have fallen apart months ago and stayed that way. 

Here is a template to follow:

Screen Name:

Real name:

Email:

Phone:

Mailing address:

OK to share any of the above with your BCO family in private messages?

Your main Topics (the ones you post on most regularly)

Mods, if this is not okay, or you would prefer me to do this in a different manner, please let me know. I just think that this would make a lot of us feel better in case something happened to one of our friends, or ourselves. 

***Edit- the Mods have provided a central list that you can sign up to be on https://community.breastcancer.org/forum/7/topic/709157?page=1#idx_19

And a few ppl had the great idea to have a list within your main boards to stay connected outside of BCO, which is what I will work on with my main friends here.  If you wish, I am happy to be the contact for whoever needs or wants one that does not have one on here in case you go MIA, or you or your family want to send a message to the community.  Again, I won't be sharing your actual info with anyone but my backup, just working as a relay. 

<3 jeni

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Comments

  • Kicks
    Kicks Member Posts: 4,131
    edited July 2014

    You want me/anyone  to just give out that much information over the internet blindly?

    Everyone who has a  'reason to know' in regards to me already has all my information.  You (or some ?) have no reason to be blindly given that much personal information!

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  • JWoo
    JWoo Member Posts: 1,171
    edited July 2014

    Um- that is why i stated : for anyone that wants to share, and you can provide as much or as little info as you like.   It is just an idea, and there are a lot of us that don't have family or other support systems- BCO is our link to others that share our trials. Just trying to do something nice for the community, you don't have to participate. 

    Again- mods- if there is already something like this, a suggestion on how this would be done best, or if you have a way for ppl to contact in case we go missing, or our families need to let the community know about something in a timely manner- please let me know. I just don't know what else to do. There doesn't seem to be a system that we can really use that we all know about. 

    thanks 

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited July 2014

    Kicks, it's great that you have established a support system with friends from BCO outside BCO. As Jwoo stated, this all came about because we have lost contact with someone on a mutual thread and sadly, a dear friend passed who was also on the same thread. This is totally optional, no one is requiring you to do anything. 

    We're trying to keep the friendships going, and trying to figure out a system to do so. 

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  • Lily55
    Lily55 Member Posts: 3,534
    edited July 2014

    JWoo thank you, such a kind and generous offer. I would love to participate but would probably limit the info I am willing to share to my screen name and email/phone but I am still mulling it. If you were the person keeping records then for your own protection I think you would need to ensure you register and comply with data protection laws. 

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  • Moderators
    Moderators Member Posts: 25,912
    edited July 2014

    Hello all, please check out the link here: https://community.breastcancer.org/forum/7/topic/709157?page=1#idx_19

    A longstanding member, nowheregirl set up a password and username protected 'central address book' originally for stage iv sisters but now expanded to everyone to hold contact details.

    The mods

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  • nihahi
    nihahi Member Posts: 3,841
    edited July 2014

    jwoo......I "get" the reason why you want to start this project, and I think your intentions are heartfelt and very sincere.

    On the "Moving On" thread, we have created our own personal contact list, outside of the realm of BCO, that we share among ourselves. The contact info is only available to people who have provided  their own info, and has been very helpful in staying in touch with those who are taking a break from the boards, but want to maintain some kind of private, personal contact with women they have connected with on that specific thread. We all have a history of quite a lot of time together on a Diep thread, so we have a good "feel" for each other, which is very important. It is NOT open to the general membership of BCO, and has worked very well for us.

    Ironically, it was Kristine's first dx of brain mets and resulting surgery, that prompted the ladies on that thread to start sharing contact info outside of BCO. 

    Maybe something like what we have done, would fill the need you gals on the insomnia thread.

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  • JWoo
    JWoo Member Posts: 1,171
    edited July 2014

    Thank you everyone! Mods- thank you! - I will want to look into/get added to the central list. It would be great if that particular thread were front  and center somewhere so that members would know about it.  

    Nihahi- that is a great idea. So sad about Kristine, I am just crushed. 

    Lily, If you want to PM me your info, or work with the thread you are most active with to start a contact list, whatever info you are comfortable giving to people is totally up to you. And that central contact list that the mods listed- that will def be helpful to anyone that wants to stay in touch. 

    a lot of times we don't think about this kind of thing until it is too late, and having a relay person is a good idea, that way only one or 2 ppl have access to anyone's info, and one contact to let whatever group you are a part of know whatever you want them to know. 

    All of you are so amazing!

    I love this community!

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  • FireKracker
    FireKracker Member Posts: 8,046
    edited July 2014

    thanks but no thanks

    Every thread I'm on I have sistas who have all the info that's needed

    I made one mistake will not make another

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited August 2014

    Ladies, if you don't want to make your information available, you don't have to, this isn't mandatory by any means. After having lost a dear friend on the Insomniacs thread (Fierce Blue Bird), it got some of us thinking how we could stay in contact with members when they go MIA from BCO for whatever the reason (yes, some people get tired of the whole BC stuff and may want to disappear). Just a way to maintain contact. 

    If you want us to be able to contact you in this situation, please help us come up with a way to maintain this info without compromising any of it to people outside of BCO.

    ** Please don't leave mean comments here as they are totally unnecessary and reflects on you, not us. **

    Edited: 

    It's totally unnecessary to leave comments if you DON'T want your info, the intent was if you DO want to share contact info. 

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  • FireKracker
    FireKracker Member Posts: 8,046
    edited August 2014

    that comment was not mean

    Just facts

    Try again,u just might get it right this time....

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  • FireKracker
    FireKracker Member Posts: 8,046
    edited August 2014

    bump

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