Facebook network for younger women diagnosed with breast cancer

Hi everyone, I’m just letting you know about an idea I am trialling at the moment. Wen I had my diagnosis and treatment 2.5 years ago, at age 36, I felt very isolated, and different, and alone. The fact that I was surrounded by older ladies in waiting rooms, and the shock people had when they realised that I could get breast cancer, only served to compound those feelings of isolation. I do not think that the medical profession has considered the different ages of women when they are treating us. For example, the chemo info sheets I received told me lots of weird and wonderful potential side effects but didn’t really mention the main side effect for me as a younger woman, ie. that my pre-menopausal hormones would be hit with a sledge hammer, that I would suffer really tricky mood swings, weepiness etc and my changing hormonal status itself would affect my anxiety levels. If they had pointed this out, maybe It would have saved me some feelings of madness and isolation.

The BCC website was great at bringing me together with other young women going through this, and I have made great lifelong friends through it. The younger women’s forum I went on in Manchester was also great, but I was bemused that there was a whole group of young ladies there, who lived 20 minutes down the road, all based at their own units but under the umbrella care of the Christie, and nobody had thought to put us together. Therefore, we were all really close to each other but isolate at the same time.

So in an attempt to stop this happening to the new crop of younger women diagnosed, I have set up a Facebook network, initially for the Manchester area (though there are ladies from further afield contributing). It’s aim is to link younger women together so they can supported by other local young women going thru this cr@p at the same time.

It’s called Young Breast cancer network (Manchester), there is an initial fb page and then if you send a message explaining who you are and your situation, we can add you not the private group to chat freely and hopefully meet up. Who knows, if it works well I might do ones for other areas too!

So please feel free to come along and join us. As with this forum, and others like it, the usual cyber safety rules would apply. We already have more than 20 members ranging from ladies who were treated a few years ago to ladies just in the first stages of their “journey”.

Thanks for reading.

********I am editing this on 17/11/12, to update anybody who might just be reading these first few posts. It soon became apparent to me that the support network for younger women was needed far beyond the Manchester area, and therefore I opened membership out and we have members from across the UK now, and a few from distant far flung places too! It has been renamed to reflect this and can now be found as ‘Younger breast cancer network (UK)’, and at the time of writing we have over 100 younger ladies, chattering away. ************

Bump to get in main page!

I would love to join :smiley:

Ps. The main page is visible to anyone who searches it, so there isn’t personal stuff on there. The reason I join you to a private group is so that you can chat without it being a public forum. It’s a secret fb group so nobody outside the group knows you are in it, and nobody outside the group can read your stuff. Obviously, I’ll be monitoring it and if there’s any sign of somebody being a fraud, or being unkind etc, I’ll block them immediately.

Come find us on Facebook, send a message on the page explaining who you are and then I can send you a friend request. Once you’ve accepted the friend request I can join you to the group. You can then unfriend me if you want to. We’d love to have you join, and hope it really helps. X

Tors, I’m not in Machester, I’m in the SE but i’ll join. My first name is Joanna so when you see a request, that’s me x

oh i will send a message now :slight_smile:

Just sent one too xx

Bump

Anyone who’s unsure, I just wanted to vouch for how lovely the people already there are. They’ll make you feel very welcome. Everyone is at different stages of treatment so lots of advice, help and support to be had. Come join us

I’d love to join, Im in London but I’m more than happy to chat online. will search nexzt time I’m on FB

Hiya, I’m probably being daft but I can’t see how to get to the closed group? It’s not under my “groups” section to the left on my main page. Could you double check I’ve been accepted to the group? Thanks :slight_smile: x

Hiya, you need to go onto the public page, then send a message asking to be joined to the private group. I’ve set it up like that so that anybody who might need the support can stumble across it easily on a search, but if the chat then takes place on that page the whole world would be able to see it. By sending a private message to the page, nobody other than me and the other lady helping me moderate it can see your message. We can then send you a friend request and once you accept it, we just click you into the group and it should pop up on your groups list.

Sorry it’s a two stage process but was the only way I could figure out to use Facebook as a tool, to let people know we exist but also to keep our thoughts and fears private to a restricted group.

I’ll keep an eye out for your personal message so I can get the ball rolling. Stick with me though, cos I’m not at my computer 24/7!

I did that yesterday and accepted you (?) as a friend - I’m Joanna. Maybe i just need to be clicked into the group? Thank you :slight_smile: x

I’ll go check xxx

just got the add - thank you :slight_smile: x

Phew, technology is NOT my forte!

Just shamelessly bumping this thread to keep it at the top of the lead board :wink:

Just want to let everyone know that we have 41 members already!!! Wow!

Also, just want to say I’ve changed the name of the group to…

Young breast cancer network (Manchester)

Ta-daaa! I was told the other one was rubbish and not catchy enough , but now we can sing YBCN to the tune of YMCA.

Leah, if you are reading this, do you fancy coming over to the page and liking it???