I belong to a local support group, mainly made up of a lot of much older ladies then myself. They are a great bunch and we have a laugh, but the big C is never mentioned! So if you want any emotional and/or factual support this is not the place to get it. That suited me fine for a while, if I needed any detailed info I came onto this site and got all the answers I needed. But we recently had a new lady join and the leader asked me to take her under my wings, so to speak. She is very anxious, which is understandable, and I tried to give her as much info as I could, incl. a link to this site and relevant publications etc. She now has said to the group she really can’t cope with all the doom and gloom she keeps reading on the site and wishes she had never asked. Coupled with the fact that she has just discovered that I have had a recurrence, she tries to avoid me altogether. I have noticed that the younger ladies that originally joined, some of whom have secondaries , have stopped coming to the support group. I am also having more tests and I am in and out of hospital for more investigations, so could do with a bit of support from people who ‘know’. I don’t really know whether I should still go this group. I know we don’t all want to talk about the big C all the time and a lot of us just want to get on with things, but surely a support group is just that, support for people living with BC. I know that this site offers the live chat sessions, but I don’t want to talk freely when my OH is about. He is very caring and understanding, but I feel is getting just a bit fed up listening to me going on and on, so better for me to do these sort of things when is at work.
Have any of you girls any experiences with support groups, and what do you think.
Really sorry to hear about your experience with the support group - the same thing happened to me when I first joined a ‘general’ group in that no one spoke about what bound us together and I found it really strange. In the end I decided to form my own group (that was back in 1997) and it’s gone from strength to strength.
Is it just one person who ‘runs’ it as it can be a bit difficult to change the way things are sometimes done. I’m not sure whether you have a link into CancerVoices (part of Macmillan) as they will come out and give advice/support on how best to go forward with a group. They’ve also got a workshop on 9 April down in London called ‘putting life back into your group’.
The one area that is difficult and has proved to be difficult in our group as well is the question of recurrences and secondaries as a lot of the ‘new’ ladies can’t cope with it being discussed which I’ve acknowledged so the 5 of us who have got secondaries have decided to meet outside the normal group at a local restaurant.
Is it run by the breast care nurses or an individual? It it’s the bcn you might have an opening there to express your concerns.
I’m sorry you are having a difficult time at the moment, there are a couple of BCC’s support services that might be what you are looking for. The first is Breast Cancer Care’s telephone support group. The aim of the group is to give you the opportunity to talk privately and confidentially to other people around the UK with similar experiences.
Discussions cover issues such as coping with the impact your diagnosis has on your life, relationships, returning to work, money, as well as other peoples’ expectations of you.
The groups are completely free (we pay for the phone calls) and as long as you have access to a phone and have a quiet private place from which to call, you can join us from anywhere in the UK.
Alternatively there’s Breast Cancer Care’s peer support service. The telephone service aims to quickly put you in touch with one of our trained peer supporters, who has had a personal experience of breast cancer. Our peer supporters are from diverse backgrounds and ages and have experienced different types of breast cancer and treatments. They are ready to listen, offer skilled emotional support and share their experiences and understanding.
For more information about both these support services and other support available to you please telephone our helpline on 0808 800 6000or email: <script type=“text/javascript”>eval(unescape(‘%64%6f%63%75%6d%65%6e%74%2e%77%72%69%74%65%28%27%3c%61%20%68%72%65%66%3d%22%6d%61%69%6c%74%6f%3a%69%6e%66%6f%40%62%72%65%61%73%74%63%61%6e%63%65%72%63%61%72%65%2e%6f%72%67%2e%75%6b%22%3e%69%6e%66%6f%40%62%72%65%61%73%74%63%61%6e%63%65%72%63%61%72%65%2e%6f%72%67%2e%75%6b%3c%2f%61%3e%27%29%3b’))</script>.
i would love a support group to be set up in my area, the nearest is 6 miles away in a hospice, i really do not want to go to a hospice, but i think the town i live in (29’0000 population), well, i can’t possibly be the only under 50 in this size area who has had bc! i would love to set my own up, but i do not know how to go about it.
Alisonxxxx
I’ve avoided face to face support groups because I’ve always thought that just because I have breast cancer doesn’t necessarily mean I’ll get on with other people who have it. I would hate a support group where the ‘big C’ wasn’t mentioned! I also don’t like anything pink and fluffy or fund raising or anything about diet, make up, thinking positive or yoga…and my perception is that support groups spend a lot of time on these things.
Somehow for me the internet and on line forums have been the ideal place for support. I’ve cyber met (and for real too) some fabulous women from all over the country. I can pick and choose who I take and give my support from and to…for me the internet just provides so many more opportunities to meet like minded women.
Thanks for your kind comments. I can see where you are coming from Jane, but I understand that each group runs quite different, some have all that ‘fluffy pink’ stuff, a you say, others don’t. Pinkdove, your input was interesting. My group is actually run by a lady who has no experience of BC, nor do any of the ‘helpers’, i.e. we have a proper committee, with secretary, treasurer and tea maker. This in itself is a problem, but maybe other groups are also run by non BC survivors, I don’t know. The leader is also not very computer literate, so does not offer immediate access to the net and all its associated help/advice/literature. As you say, Pinkdove, the main problem seems to be the support for ladies with recurrences and/or secondaries. When I first joined and introduced myself and said that I had a recurrence, I got the feeling that ‘their worst nightmare’ had just walked in the door. As we’ve had some funding the group offers alternative therapies (reflexology and hand massage) and I do enjoy these treatments. And I said before, all in all they are a happy bunch and we have some nice days out as well as the meetings, and they offer support when someone first joins, but it definitely is not the place if you have ongoing problems, want further info or just chat with someone about the whole CA journey. Like Jane, I have made some virtual friends via the net, and that is where I get most of my factual info from. So I suppose what I am saying is that I’ll stick with my group for purely social reasons, but not for BC support.
The one really good thing about our group is that I set it up independently of the hospital so we have complete say in what we do and don’t want. We also don’t have anyone in our group who hasn’t had a diagnosis of cancer (except for the two breast care nurses). We have open meetings and other times have speakers such as the lymphoedema nurse and physiotherapist and then other speakers on things that aren’t cancer related.
It’s interesting that you say yours is run by people who haven’t had bc - I think I’d find that quite hard (depending on how they run it) - its like someone trying to tell me how I should react etc with having secondaries as I don’t know how they can tell me something they haven’t experienced. You can empathise with someone but you can’t truly know what it’s like until you’ve experienced those emotions as it’s not just about the medical side of it.
I think the main thing we all get out of it is friendship (but it’s not ‘pink and fluffly’). As Jane says, some you don’t get on with but I have to say there are very few in our group that I don’t get on with and the majority are brilliant and really close friends now having been in existence since 1996. When I was diagnosed with secondaries it was amazing how many of my ‘primary’ friends rallied round and gave me support in loads of different ways. I don’t feel that I need ‘support’ from the group as I’ve always had a support network outside the group as I have a lot of friends who are medical professionals (even a psychotherapist and a psychiatrist which came in useful in the early days!!) plus the type of work I used to do.
It’s what suits you as an individual - it can be a bit intimidating going to a group for the first time because you have no idea what to expect, what the members will be like, what will be discussed, etc. but I feel ours has a really good balance - it must have as we’ve got 70+ members! The main thing is the friendship and having a laugh but also in supporting people when things get a bit hard (that’s usually on a one to one basis). We’ve also had to address the issue when one of our members dies which is always really hard but we’ve got round that by having a ‘celebration’ dinner rather than sitting there all doom and gloom and going home feeling really down.
Alison - if you really want to look at setting up a group think about contacting Macmillan as they have CancerVoices and their user rep should be able to help you. They have some good booklets on setting up a group. Ours started with just 2 of us!
hi Pinkdove, i am a member of cancer voices i didn’t realise that they had reps!! thank you for that, i will certainly get in touch with them. i would certainly want it to be run by people who had had bc though
Alisonxxx
If you look on the Macmillan/Cancer Voices website you’ll see under Cancer Voices ‘contacts’ and then a list will come up of all the Macmillan Development Community Network Co-ordinators and it’s the one that’s in your area that will be able to help you. Ours is Jamie Spencer and he’s been really helpful.
Hi Pinkdove, i couldn’t find that section (i am an old mac user!!!) but i have sent an email outlining what i would like to help achieve in my area.
Alisonxxx
Hi pinkdove and alisioncamera,
was very intrested to here about Support groups i often feel the need to be in a room with people who really understand where i’m coming from. Unfortunatly i havn’t found any in the area where i live. I really don’t feel i can talk to the people closest too me, they really don’t understand. I have had the most amazing support from family friends and collegues but its not enough. After all treatment is completed you feel alone and out on a limb thinking ‘wot next’ If i hadn’t had this sight to go to i don’t know what i would have done. A support group would have been a god send.
Sorry to hear that there isn’t a support group in your area. I think you’re right, people very often underestimate how they’re going to feel once all the treatment is finished and how you go forward from then.
Have you thought about contacting Macmillan to see if there’s a group somewhere in your region?