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Secret sbc facebook group - tools in our tool box!

61 REPLIES 61
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Community Champion

Re: Secret sbc facebook group - tools in our tool box!

Smiley Very HappyThat's the sort of thing I  do Eileen. Don't worry, just glad you're ok Smiley Wink

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Member

Re: Secret sbc facebook group - tools in our tool box!

Hi Julie, I'm OK thanks, I didn't even realise I'd clicked on the thread and created a post. Sorry.
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Community Champion

Re: Secret sbc facebook group - tools in our tool box!

Eileen did you mean to leave a message? Hope you are ok

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Member

Re: Secret sbc facebook group - tools in our tool box!

 
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Member

Re: Secret sbc facebook group - tools in our tool box!

Hi Julie

I would be interested in chat girls I am 47 diagnosed in April 2015 with bc then in July 2016 diagnosed sbc in bones and recently in lung my name is karen tingle my Facebook is a picture of me x husband

Hopefully talk soon

Karen
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Community Champion

Re: Secret sbc facebook group - tools in our tool box!

Hi Juliewp,

 

There is Younger Breast Cancer Network (UK), they have a public main page on FB but also an invitation only closed group. They are not specifically secondaries but are for younger women (under 45 I think).

 

There is also Breast Cancer and Secondary Breast Cancer, a mixed primary/secondary and various ages.

 

Secondary Breast Cancer Support Group, mixed age group for those with secondary bc, also family/carers

 

Then there's my group Chat Girls,which is for women with SBC of all ages, you on't find us by searching as we are a closed/secret FB group. Ee do have women at all stages of their Secondary diagnosis including last days and we do have members dying so it doesn't necessarily suit everyone. However, there is support, love and laughter too. If you are interested in Chat Girls sed me a PM on here with a brief history of your cancer journey and your FB  identity ie name and what to look for like where you are what your picture looks like (so I  can find the right person!). Once we are FB friends I  can add you. If the other groups sound more like you then just go to their FB pages to see how to contact/join.

 

Good luck.xx

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Member

Re: Secret sbc facebook group - tools in our tool box!

Juliewp, I would love one as well, preferably for younger women, if I still belong to them of course. 37:)

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Member

Re: Secret sbc facebook group - tools in our tool box!

I am searching for UK based Facebook groups for (preferably younger) ladies with secondary breastcancer - this thread seems to imply there is a secret one!  I belong to a few but most are US focused and have not found any in the UK.  Please let me know if you know of any and how I can access them.  Many thanks in advance

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Community Champion

Re: Secret sbc facebook group - tools in our tool box!

Thanks Ethel and to you too!! xxx Happy Christmas all, hope everyone has as painfree and relaxed Christmas as possible.

 

To all those of you who are having problems getting to join the FB group I'm sorry. I've tried to contact you but it seems you haven't got private messaging set up on this site so I can't which in turn means we cannot 'talk ' to you about the group and how to join. If you cannot get messaging set up perhaps you can contact the moderators for help/ advice on how to get it enabled.

 

Julie  xx

 

 

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Member

Re: Secret sbc facebook group - tools in our tool box!

Happy Christmas to us all! Ethel x

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Member

Re: Secret sbc facebook group - tools in our tool box!

I've tried to friend you in the hope of getting you group details he,p please x

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Member

Re: Secret sbc facebook group - tools in our tool box!

Please see the bcc post how to friend. X
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Member

Re: Secret sbc facebook group - tools in our tool box!

You must get fed up of numpties like me. I thought I had sent you a friend request but when I look it appears i am `following` you. ( I thought that was a twitter thing) so now I am completely stuck as even folliwing instructions from the help page the only option I get is to `unfollow` what a shame as I feel the facebook page would be my better option. Any help would be apreciated.
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Member

Re: Secret sbc facebook group - tools in our tool box!

I don't understand this...will just blame chemo brain lol.

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Member

Re: Secret sbc facebook group - tools in our tool box!

CAn you pleas tell me how to join ...thanks


Suze
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Member

Re: Secret sbc facebook group - tools in our tool box!

How do I join the FB page....help

 

 

Suze

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Member

Re: Secret sbc facebook group - tools in our tool box!

Please friend here. I can't talk privately unless we are friends. Ethel x
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Member

Re: Secret sbc facebook group - tools in our tool box!

Is it on this site or facebook we need to send a friend request?
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Member

Re: Secret sbc facebook group - tools in our tool box!

I can't message you unless you friend me sorry Ethel X 

 

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Member

Re: Secret sbc facebook group - tools in our tool box!

I too am looking to join the secret facebook group. I was diagnosed in July with SBC 14 years after my initial diagnosis.
I think I have sent yourself and Julie a friend request on here but I am not that good with these things.
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Member

Re: Secret sbc facebook group - tools in our tool box!

Thank you Ethel, for all your help and getting me onto the secret Facebook group.i am overwhelmed by the number of welcoming posts I have received already from so many of the lovely ladies on there, I'm sure I will be spending quite some time with them! Thanks again, Anne xx

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Member

Re: Secret sbc facebook group - tools in our tool box!

Hi you need to friend request Julied or me to chat here. Ethel x
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Member

Re: Secret sbc facebook group - tools in our tool box!

Hi everyone,

 

hope you're all as well as can be. I am new to this site, I have bone mets in skull. I'd love to join your FB page please. I'm not sure how to go about it though?

 

Anne x

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Member

Re: Secret sbc facebook group - tools in our tool box!

Hi Julie, just want to say thank you for starting the f/book group up, the lovely Ethel has has got me on it last night, I'm not great on Facebook and how it all works but my daughter said she will help get use to it.

Looking forward to chatting to you all,

Thanks again Janette xxxxxxx 

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Community Champion

Re: Secret sbc facebook group - tools in our tool box!

Oh Cress I'm sorry you are having problems I did get a PM from you and replied briefly, will try again sending you more details.

 

julizd, have you been sorted yet? if not you can PM me or ethel.

 

I started the FB group and ethel is one of our lovely regulars who has bought a lot of new members to us so if there are any of you out there with SBC who think you might like an extra avenue of support PM either of us and we can have a chat about the group and whether it's right for you and how to join xx

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Member

Re: Secret sbc facebook group - tools in our tool box!

i dont come on here very often and even less so on macmillan but there are others here who know about the group who will help you too. ethel x

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Member

Re: Secret sbc facebook group - tools in our tool box!

Just so other people know to message someone else in private i think we have to be friends first. Please dont give up as the facebook group now has over 200 active women with sbc who are there to chat 24/7 in a place that cannot be seen by friends, family or anyone else. Its different to here and macmillan and just adds another tool in your toolbox to cope with all that comes with sbc. Ethel x

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Member

Re: Secret sbc facebook group - tools in our tool box!

emerald can you contact the people on here. I need to talk privately. please dont give up. x

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Member

Re: Secret sbc facebook group - tools in our tool box!

Hi Emerald,

 

Lucky ol' you! I've tried the Private Message and Friending... think it must be the Masonic handshake next lol!

 

Best x 

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Member

Re: Secret sbc facebook group - tools in our tool box!

Hi you will need to friend me and personal message me so that I can explain as you will not find it via google or any other searches. Ethel x

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Member

Re: Secret sbc facebook group - tools in our tool box!

Hi could I be added to the group too please x 

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Member

Re: Secret sbc facebook group - tools in our tool box!

Hi All

 

I was welcomed in to the facebook group yesterday, nice place and people, thanks Ethel

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Member

Re: Secret sbc facebook group - tools in our tool box!

Hi, me too please 

Janette xxxx 

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Member

Re: Secret sbc facebook group - tools in our tool box!

Hello Ethel,

 

I would be interested in joining the secret FB page for SBC as well. How do we go about it?

 

Thanks,

 

Julia

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Member

Re: Secret sbc facebook group - tools in our tool box!

It says if you are new it has to be approved by the moderator so I guess I need to wait to be approved

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Member

Re: Secret sbc facebook group - tools in our tool box!

Thanks for getting back to me I will try and work out how to set it up

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Member

Re: Secret sbc facebook group - tools in our tool box!

Emerald you don't have private messaging enabled. I've sent a message too but it says you haven't set it up. That's what I really hate about this forum the messaging is so difficult. X
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Member

Re: Secret sbc facebook group - tools in our tool box!

I would like to join but I do not know how to send a PM

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Community Champion

Re: Secret sbc facebook group - tools in our tool box!

Bsm,

I have tried to send you a private message but it says you've not got this set up, maybe you can PM me?

Julie x

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Member

Re: Secret sbc facebook group - tools in our tool box!

Second Hope the charity for people with secondary breast cancer was set up by the women on the secret secondary breast cancer Facebook group Chat Girls. It is a safe place to chat seven days a week 24/7 with others who know just how I feel.  It's the best tool in my toolbox! Ethel x

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Member

Re: Secret sbc facebook group - tools in our tool box!

Hello Julie. May I please join the Facebook group? 

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Member

Re: Secret sbc facebook group - tools in our tool box!

Bump
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Community Champion

Re: Secret sbc facebook group - tools in our tool box!

Mermaid have PM'd you xx

 

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Member

Re: Secret sbc facebook group - tools in our tool box!

Hello Julie can I join the Facebook group too please
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Community Champion

Re: Secret sbc facebook group - tools in our tool box!

scoobiesue, I've sent you a PM xx

 

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Member

Re: Secret sbc facebook group - tools in our tool box!

Julie I have a FB account and have tried to join you ladies. Not sure how I have managed to get it wrong. Help please.SSue

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Member

Re: Secret sbc facebook group - tools in our tool box!

Hi Ladies

 

I would very much be interested in joining the SBC FB Group.  I have sent a PM, as i mentioned this forum is great and reading and sharing experiences in more ways can only be a help too xxx

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Member

Re: Secret sbc facebook group - tools in our tool box!

Thanks Julie

Hugs Janette xxxxxxx 

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Community Champion

Re: Secret sbc facebook group - tools in our tool box!

 

Siani, so pleased go hear you are finding our FB group helpful.

 

It was very small when I set it up but there is obviously a need as we have over 200 members now! Yes natalie, as it's a FB group you do need a FB account. Once you have set up an account PM me and I'll explain how you can be added to the group.

 

It is specifically for those with SBC so everyone knows 'where you are coming from'. It's a very supportive group but remember there will be women at all stages of SBC including those at the end of the journey. Being a big group of eople facing a life limiting illness we do have losses. It can be difficult when we several members leaving us in short periods of time. So it can be a double edged sword, however I think that we would say that the sadness and loss is outweighed by the love support and friendship.

 

If you join FB and want to join us you'd be warmly welcomed xx

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Member

Re: Secret sbc facebook group - tools in our tool box!

I've recently joined the FB group & found it inspirational. A place to safely say what you can't in other areas of your life, and to realise that you are not alone. Thanks ladies x