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Facebook metastatic bc group?

72 REPLIES 72
Bevlaar
Member

Re: Facebook metastatic bc group?

Ok great. I've asked the admin. They just want your full name. Cam you send me a private message and I'll pass it on xx
sivam
Member

Re: Facebook metastatic bc group?

Yes please I would like to be added to the facebook group, sorry I did not reply earlier, Thank you so much xxMavis

Bevlaar
Member

Re: Facebook metastatic bc group?

Hi mavis.. I'm a member of the same facebook group as Ethel. Think we just have to add you as a new member and admin will then accept you.
Would you like me to add you this morning in case Ethel doesnt see your post? xxxx
sivam
Member

Re: Facebook metastatic bc group?

Hi Ethel, I am interested in the Facebook metastatic group, but dont know how to e mail you. I belong to another secret Facebook group of just 12 people who were part of BCC forum having chemo at same time in2011 and we meet up once a year in the centre of the country.Two of the 12 have developed  mets and the love spread from all in our group has been tremendous. How do I join the Secondary group?xx Love and Light xxMavis.

Amalfi
Member

Re: Facebook metastatic bc group?

Hi Ethel, still not sure how to access the facebook page.

Amalfi
Member

Re: Facebook metastatic bc group?

Ethel, i have sent you a pm on facebook

Ethel_horner
Member

Re: Facebook metastatic bc group?

Hi all, there were 20 there yesterday mostly from the south of the country but some from the nw too! We had a ball. It was so good to talk freely and share our tales and compare notes. It was lovely to put faces and personalities to names. The group is on Facebook but is secret so won't show on timelines or googling which means like Anne kirkbride man you have kept their dx secret too. The group has over 100 active sbc women who are there (between them) 24/7 for support and advice with others who know from personal experience. Can't wait for our next jamboree, the Midlands is next. Ethel x
rosie53
Member

Re: Facebook metastatic bc group?

Oh thats fab!!
I thought it was you that went to the Christie, i understand what you mean about it taking a long time to get to this place, me too.
Anyone posting from the northwest please feel free jump on board, it would be lovely to have a get together???
Hugs J x x x
LemonDrizzle
Member

Re: Facebook metastatic bc group?

Hi J, I'd forgotten you go to the Christie too (I get very mixed up these days!). That sounds like a really good idea- it's taken me nearly 12 months to get to this point but I think it's another step in the right direction. A northwest group is a great idea, thanks for suggesting it.
LD x
rosie53
Member

Re: Facebook metastatic bc group?

LD are you in the northwest?? If you are we could maybe get a northwest group get together organised and maybe meet up somewhere in Manchester?? Just an idea see what you think
hugs J x x
bertie1
Member

Re: Facebook metastatic bc group?

Have a great time ladies xx
LemonDrizzle
Member

Re: Facebook metastatic bc group?

That sounds lovely Bev and Belinda, lots of support but more importantly enjoyment! I feel a bit like you Natalie - think I'd like to do something like that.
LD x
Bevlaar
Member

Re: Facebook metastatic bc group?

Hahaha belinda...sounds like fun! I belong to a group of "secondary" ladies ....most of which attend the same hospital for treatment...a few of us meet regularly for coffee or lunch. But on 6 feb there are 12 of us meeting at a lovely city hotel for afternoon tea with prosecco.
One of the ladies rung to book it and told them we were a group of ladies all receiving cancer treatment and they gave us 50% discount!!
Its lovely to have these get togethers...so much love and support xxxxx
belinda
Member

Re: Facebook metastatic bc group?

Have a great time all. Years ago, many happy memories, a group of us, from here, BCC forum, stayed up chatting till 3 am, we met and all stayed overnight in a London hotel. We were too excited to sleep, it was our first meet of many. The next day at breakfast one of our friends, slightly hungover, came down to breakfast with her wig on back to front. Good times. Have fun. X
LemonDrizzle
Member

Re: Facebook metastatic bc group?

Hope everyone going has a great time.
LD x
rosie53
Member

Re: Facebook metastatic bc group?

Aww enjoy, would love to do something like that
hope you all have a fab day.
Hugs J x x
Bevlaar
Member

Re: Facebook metastatic bc group?

Have a great time Ethel! Covent Garden wont know what's hit it hehe! xxxx
Ethel_horner
Member

Re: Facebook metastatic bc group?

Twenty girls from the facebook group (plus some from here who don't do facebook) are meeting from all over the country tomorrow. So if you're near Covent garden from 12pm and can hear a loud, raucous bunch of women you'll know its us. Ethel x
Ethel_horner
Member

Re: Facebook metastatic bc group?

🙂
Ethel_horner
Member

Re: Facebook metastatic bc group?

🙂
Ethel_horner
Member

Re: Facebook metastatic bc group?

Please do not put any information on the forum if you want to know about the secret fb group (100+ very active supportive sbc women) but pm me for a chat . Ethel x
Ethel_horner
Member

Re: Facebook metastatic bc group?

You need to pm me x
gigli
Member

Re: Facebook metastatic bc group?

Hi. Can I please join the Face book page. My name is *********
Ethel_horner
Member

Re: Facebook metastatic bc group?

There's something on your settings stopping pm x
Ethel_horner
Member

Re: Facebook metastatic bc group?

Carly I can't pm you as it's blocked and I need to talk to you privately first. Please contact me. Ethel x
Carlyb1979
Member

Re: Facebook metastatic bc group?

Hi, I am also looking to join the fb group, but can't work out how to pm anyone to give my details! Find this forum very un-user friendly compared to fb! Please help!
Ethel_horner
Member

Re: Facebook metastatic bc group?

Bump xxxx
lyndam1
Member

Re: Facebook metastatic bc group?

Thanks June, will give it a try. x

June_BCC
Member

Re: Facebook metastatic bc group?

Hi Lyndam1

 

To PM another user just click on their name and then select - Send this user a Private Message.

 

Best wishes

June, moderator

lyndam1
Member

Re: Facebook metastatic bc group?

Like quite a few others would love to join FB group but not sure how to pm you

Ethel_horner
Member

Re: Facebook metastatic bc group?

Bump x
Gillg78
Member

Re: Facebook metastatic bc group?

I am a member of several. There is the sad terrible side to it also but the advice and support I feel from these ladies has helped me immensely. All of my onc questions have came from the advice of these ladies. X
Desi-2
Member

Re: Facebook metastatic bc group?

That's wise Janette must admit there have been times it's made me feel quite low xx
rosie53
Member

Re: Facebook metastatic bc group?

Thanks chocolate and Desi, mmm not sure now about what to do, don't want sad news to bring me down!! Will mull it over for a few days i think
Love and hugs Janette x x
Chocolates
Member

Re: Facebook metastatic bc group?

Yes Janette - I hope you can get your yourself sorted out. You will find it useful but remember there are ladies on there who are close to the end of their lives as well so you need to be prepared. Just want d to warn you in advance xxxx
Desi-2
Member

Re: Facebook metastatic bc group?

Janette if you want pm me your surname il try and add you to the group later today when I get back home xx
rosie53
Member

Re: Facebook metastatic bc group?

Hi ladies, i'm not on fb either but reading these posts on how interesting and helpful it can be i think i might give it a go.
Please can you tell me how i go about it?? I am useless with computers etc but my daughter would be able to help me sort it
thank you hugs Janette x x
Ethel_horner
Member

Re: Facebook metastatic bc group?

Just bumping this up the forum x
JulieD
Community Champion

Re: Facebook metastatic bc group?

Canton, that's messages disabled here on BCC incase I wasn't clear. I see your post has been edited probably because you gave your full name, which of course I do need. If you can enable your messages here or send me a\PM here with your details that would be good. You should be able to click on my name which should take you to my profile page and there you should be anle to 'send a message'

 

Hope you are doing ok

 

There is Secondary live chat on here tonight at 8.30 - 9.30 if you'd like to join us

 

Juliex

Canton04
Member

Re: Facebook metastatic bc group?

Hm, will check. I am Caroline on Facebook. Profile pic sitting under a lamp in a green dress.

JulieD
Community Champion

Re: Facebook metastatic bc group?

Canton have tried to send you a message but can't, sems you have messages disabled

Bevlaar
Member

Re: Facebook metastatic bc group?

Yes Julie...j was particularly moved by the recent passing of a lady who only lived a few miles from me. I really felt for her daughter who was posting. I have a daughter around the same age and a son a bit older. The thought of leaving them under these horrible circumstances is unbearable. It hurts so much to think of how they'll cope with it....and i just dont want to go yet.
Sorry for being so glum......love and hugz. Bev xxx
JulieD
Community Champion

Re: Facebook metastatic bc group?

Just a quick reply to let you know I've seen your posts and will try to contact those individually that want to join the FB group, probably Sunday as a bit busy tonight, so keep an eye on your messages.

 

Bev, you are doing the right thing, you must be led by your oen needs and dip in and out as suits you. We have had a particularly hard time with more deaths close to each other than ever before but I'm afraid that's the reality which is as you say why you need to think carefully about joining. Hope you are ok xx

tiger_feet
Member

Re: Facebook metastatic bc group?

Hi Julie I have added you as a friend but not managed to private message you my details in order to be considered for joining Facebook chat girls, can't work out how to do it. I'm 57 & diagnosed with bone mets in spine neck & pelvis in dec last year? X
Bevlaar
Member

Re: Facebook metastatic bc group?

Chocolates, belinda, ethel, julie...i recently joined Chat girls on fb and it was ok at first with lots of encouragement and support but all of a sudden in the space of a few weeks we lost a handful of ladies.
It upset me so much and i was really distressed to read the posts from daughters and families of ladies in the last stages of their lives. It put me in such a negative state of mind that i decided to come off for a while. I'd find myself dwelling on it all day and quite often got physically upset.
It wasn't good for my family to see either. Maybe I'll feel differently later on.
So i would say yes think hard about joining.
Love and hugz...bev xxx
Canton04
Member

Re: Facebook metastatic bc group?

Hello, I'd like to join the Facebook group(s) too.  I've added Julie as a friend but not sure how to send a private message.

I'm Caroline, just turned 44, diagnosed with primary TNBC June 2013, finished treatment April 2014 and diagnosed with liver mets a few weeks later.  I live in Luxembourg.

 

Can you invite me to the facebook group Julie?

 

Thanks,

 

C

Chocolates
Member

Re: Facebook metastatic bc group?

Julie - thank you for saying that. I spent all weekend worrying about whether I had upset anyone. It has been such a hard few months hasn't it. But in other ways that is the strength of the group - I wish not but it brings us even closer together. Just hate it all so much. I really hope you are looking after yourself. You're always in my thoughts as you give so much. Please always save some for yourself. I've just emailed about the parliament thing - haven't fully made up mind but it is a chance we can't miss.

Huge hugs everyone. xxxx
JulieD
Community Champion

Re: Facebook metastatic bc group?

Well said Chocolates was going to post something similar. I feel like you Belinda, my life has been enriched by the women I have met and I would not change meeting them but it is so so hard when we lose our friends. Chat Girls has just been through the worst couple of months since we started in 2011 and it has been an incredibly hard and sad time.

 

The love and support is great. You can be open and honest about your thoughts, feelings and fears, we share tears and laughter BUT you do have to remember that by it's very nature the group has lots ofend of life talk and we do lose our lovely friends.

 

If you are interested in joining then PM me your FB details, preferably more than just your name as there may be more than one Jenny Jones, so an idea of your FB picture where you're from... would be useful to find you.  Also if you wouldn't mind giving me a brief history of yourself that woulde be good. To PM me on here if you put JulieD into the search box and select users in the drop down it should then take you to my page and there should be a send message option.

 

Thank you for the nice things you've said those of you who belong to the group already xx

belinda
Member

Re: Facebook metastatic bc group?

You have explained it well Chocolates. I would meet all my late friends again, I would choose the same path but over time, especially if you meet up, the loss after loss is hard to bear. I often look up late friend's messages here, just to 'hear' their voice again. I closed our chat forum last winter as we 3 who were left were rattling around an empty room as it were and it was too sad. Easier to email. I have kept in touch with late friend's families, children, been to funerals, visited graves. That said I have also had so much fun, support, friendship. We ate chips by the seaside, were up in the middle of London at 3am. We used to usually meet at a chosen hotel, have a meal together, a breakfast together before all going home. The girls still help me now when I'm having a wobble, I can think what would they do, say.
And life is all about reaching out isn't it? X
bc-lass
Member

Re: Facebook metastatic bc group?

Chocolates who are you on chat girls?