Hi everybody,
I just wanted to let everybody know about our group. I’ve previously posted a thread but thought a fresh one would be appropriate to celebrate our six months up and running.
In March 2010, I was diagnosed with breast cancer at age 36, with two pre school age sons, no family history and no risk factors. I was given a Breast Cancer Care information pack by my breast care nurse and found my ways to these forums pretty quickly. The support was invaluable. I met a quite a lot of ladies here who are still my friends, and we went through every step of the process together. One in particular, Midge, became one of my closest friends. We realised just how valuable peer support was for women our age going through a diagnosis and treatment, especially given that you feel so different from your peers in your normal world and so different to the other patients in the medical world.
We attended one of BCC’s/Lavender Trust’s younger women’s forums in Manchester. If you don’t know already, they are a two day residential event in a nice hotel, in various cities across the UK, and you get to meet loads of other young women who are within three years of diagnosis, and there are experts on hand giving talks about fertility, diet, exercise, menopausal symptoms, relationships etc. I’d heartily advise any young woman reading this to go on one if they can (hopefully someone from the moderating team will even post a link to the current list of forums ?).
Anyway, we met a group of other young women, one of whom had the fab idea of setting up a secret Facebook group so we could all easily stay in touch. I realised from attending this event that, at the very time I felt horribly isolated and in need of local friends my age dealing with this same trauma, there were other girls all around Manchester, where I live, dealing with it in isolation too.
Given the ongoing support our little Facebook group was giving to our little band of forum attendees, I decided to try and use a similar idea to link other young women from Manchester together, so they didn’t feel as
isolated as I had felt. I had always felt very welcome and comfortable on the BCC chat forums, so I set up a Manchester network secret group n Facebook and told people about it here.
Within a few days, it was abundantly clear to Midge and I that we would have to ditch the Manchester and make it a UK group, as we were inundated with requests to join from young ladies across the country. We renamed ourselves " Younger Breast Cancer Network (UK)", set up a public Facebook page and asked ladies to message us there so we could join them to the main group. In the six months which we have been running, we have just shy of 400 members in our secret chat group, and the group is busy at all hours, day and night.
We have had to set up sub groups now, as we are so busy! Everybody has to be in the main group, but we also have entirely separate secret groups for certain things. These include groups for those with recurrences or a secondary diagnosis, for members who are past their main active treatment and want to stay in touch but not be reminded of the difficulties of dx and active treatment 24/7, those untreated in discussing research/evidence papers/articles, publicity, awareness and media and administration. We also have time out rooms for any members who feel particularly overwhelmed at given points. The group is too large to manage alone now, so some of our longer term members have been kind enough to accept admin responsibilities. We are currently organising fundraising ring fenced for younger women’s services/research (eg. BCC’s Lavender Trust), an awareness campaign and publicity to let girls across the oncology units know we exist.
The research shows that psychological outcomes can be worse for younger women, aft a breast cancer diagnosis, and that peer support is essential. That’s why forums like this and like our FB group are so essential. The criteria to join the secret FB group of YBCN (UK) is that you are UK resident or have very strong links to UK (as treatment differs so much from country to country), and that you are a younger woman with a breast cancer diagnosis, which we class as generally under the national breast screening age of 47, but do look at individual circumstances as and when necessary. It doesn’t matter if your diagnosis was a few years ago, or if you have a secondary diagnosis now as we will add you to the main
group and then any relevant subgroups.
Our members tend to talk about fertility, infertility, early menopause, dealing with young families, implications at work/on their careers, fundraising for younger women’s services and younger women’s awareness, as well as a whole host of other breast cancer and non breast cancer topics. The ability to post photos is really useful, especially to see how the cold cap has worked for people or how long hair regrowth takes. It is a secret group, so your posts can only be seen by other members of the individual groups, and not by your whole Facebook friend list or on google.
It is this privacy which is the main benefit to most of our members, as we have to discuss heartbreaking topics like abortions in early pregnancy, the loss of a sex life to a new bride and young mums receiving a secondary diagnosis, and we find our members can talk freely about things they just couldn’t share in public.
We know our criteria does exclude older women, and although we fervently hope that everybody facing breast cancer gets the support that they sorely need, we are afraid we have to be quite strict on admitting members as we don’t want to water down the main benefit and purpose of the group, which is to provide peer support and a network for younger women who are feeling isolated, and to enable them to meet local girls and women just like them who might be living just round the corner from them.
We have members ranging from 21 upwards, if you fit the criteria and would like to join, just follow the link (which I know is the old name but won’t seem to allow itself to be changed for some technical reason! ) .
And, before I go, I’d like to say a HUGE thank you to Breast Cancer Care’s team who have supported us in setting up our group, provided sound advice when we have struggled, and have let us discuss our group on their forum. We could not have done this without BCC (not least because that’s how we all met!) and I would urge readers to keep using the BCC forums and services (especially the younger women’s services!!!) as they will no doubt prove as invaluable to you as they have been for us,
Thanks for reading,
Vickie
