Support Groups.

Has anyone set up a support group?
Does anyone attend the LMC in Liverpool?

I am thinking of writing to the BC nurses and asking if it would be possible to set up a support group.

Any help or ideas on this would be great.

Rx

Hi Liverbird - Just wrote to you on another thread! I was involved with a couple of support groups in UK, one I ran for people with lymphoedema, and the other was run by the BCN for anyone with breast cancer and I used to go along sometimes (in a professional capacity in those days). I would be amazed if there isn’t already a support group in your area - but you may have already enquired with the BCN, local health authority, GP surgery etc. Ours used to meet once a month at a local hotel, which actually provided a room free, we just paid for the tea/coffee. We would usually have a speaker, whether someone medical, or from one of the charities, or something like “colour me beautiful” or a complimentary therapist. Used to have a coffee and a chat for about half the meeting, and the speaker for the rest. I am sure lots of people would support you in setting something up. I think Pinkdove who often posts here runs a support group and she might well write something here if she sees it. Perhaps BCC could also give you some ideas. Anyway, brilliant idea and do go for! Good luck. Love Sarah

Hi Liverbird and Sarah

Sarah - hope things are going okay for you, I seem to remember you were starting chemo? Hope you had a good Christmas and New Year with your children.

Liverbird - I set our group up back in 1996 without any input from the breast care nurses, out of small acorns…
Within a few months though the breast care nurse got to hear about us and asked if she could join and we now have two breast care nurses who come to the group with around 20-25 members at each meeting (we have 90+ members in all). One of my friends (who is 39) has now taken over the running of the young women’s group as we’ve found that there’s so many more younger women (up to the age of 45) who are now being diagnosed. I was one of the youngest when I set our group up at 40.

Macmillan have a lot of information in helping you set up a support group and have various booklets on whether you want to be a ‘support group’ or a registered charity,

I’ve always felt strongly that we are a support group and although we’ve raised quite a bit a money over the years that isn’t our main function, it’s been about offering support and friendship and we have so many close friends. We’ve also put on 3 big fashion shows (courtesy of John Lewis supplying the clothes) over the years to an audience of 400.

I feel it’s like everything, if you feel passionately about something go and do it, don’t wait for someone else to do it. We are completely independent of the hospital (we meet at a local hotel) and are able to run it how we want to.

One thing I would say though is if you do set up a group make sure that all your members ‘own’ it - don’t get just one person running the whole lot because if, for some reason they can’t make it, it all falls apart which is what happened with the general cancer group I was part of in 1995.

Sorry this is quite a long post and I could talk for England about it! We have speakers about cancer related and non cancer related things and the most important thing is that we all have a laugh. A lot of people think it’s doom and gloom but ours certainly isn’t. I also decided in 2006 that we needed a website so I approached Macmillan for a grant and got a really good local web design company in our City and hey presto we’ve got our own website now and have had thousands of hits on it. It’s got all the practical info on things such as financial info, national charities, hair loss, swimwear, complementary therapies, etc etc but nothing medical as we’re not health professionals.

I’m also amazed, as Sarah is, that there’s nothing in Liverpool considering the size it is - loads in Preston and surrounding but nothing that close to you. I’m originally from that neck of the woods and think it’s sad that nothing has been set up considering the size of the City.

Hope this helps in some small way.

Pinkdove

Hi Thanks to both of your for such detailed info.
We do have a group which i went to for about a year. It is run in the daytime when alot of people can’t make it to the group.
We didnt have many speakers at all. I once suggested having amoena mags around and was told one lady got frightenend reading things and they didnt want Bc material around as it was depressing.

We also have one in the North of the city at a hospital. As the Linda McCartney is a huge place and has a headstrong dept and mcmillan support just thought it would be good to have a group there. I am very concerned that we dont get support once we are past the treatment stage and i have foundthis time to be when i am more anxious.

Will run it past the BC nurses as i do know two of them quite well.

Well done having set up such fantastic groups.

Rxx

Our main group runs in the evening because of the problem of people working, etc. and seems to suit people really well.

Maybe that person who got frightened should never have gone to the meeting as she obviously wasn’t ready!

Have you thought about getting a few of you together who are like minded to start a group - we started off just two of us (the other lady was the reason why I set the group up as she knew her cancer was coming back within a year of first being diagnosed and didn’t feel comfortable about going to the general cancer group), another person got to hear about it and it just escalated. We started meeting in our homes and then, as we got bigger, rang round the various hotels to see if any of them were willing to give us a room free of charge and that’s what happened.

You don’t necessarily need to rely on the BC nurses to set it up initially. As I said before, if you feel strongly and passionately about it you’ll find a way to making it come true as I did. A friend and myself have now set up a very private secondaries group which is strictly by invitation only as we want to be able to have the say in who and who doesn’t go to that group as we need to protect ourselves against people who might drag us down - it’s a bit different from setting up a primary b.c. group. We’ve 5 of us who are all like minded - upbeat in spite of what’s going on for us and yet are able to talk about things if we’re feeling down or in need of a bit of support. Another friend of mine said people are either drains or radiators and I think she’s right!

Liverbird - Do hope you can get something started - let us know how you get on.
Pinkdove - I am so glad you saw this, I knew you would give a really helpful reply - you are so dynamic! Thanks for asking how I’m doing - Yes, going through chemo and all going OK, had two of six so far. I quite often post on “Anyone Starting Chemo” started by Dyzee. This whole forum thing has been a wonderful support to me and makes me feel so connected to home in UK - coming back for a week next month for my son’s half-term! Hope everything is going on OK for you. Sarah x

where i live the only place you can access a support group is at the hospice 6 miles away, i feel its very sad for a town our size not to have any support group at all, i am hoping to get one started in the near future
Alisonxxxxxxxx

Hi Sarah

Glad to hear you’re doing okay on the chemo - only 4 more to go, then 3, then 2 etc! When was the last time you came home? It’s been absolutely lovely here today, mind you having said that it’ll probably be awful for the rest of the week! Went out for a walk and was amazed to see all the plants and buds on the trees starting to grow.

I’m fine thanks. Had a CT scan on Thursday and saw my oncologist for the results the next day and my liver tumours continue to shrink (that over the past 9 months) so was really relieved. My oncologist is brilliant, she’s so intuitive and really cares about her patients and I know we’re really lucky to have her.

Look after yourself and I hope the weather is okay when you come back!

Pinkdove
x

Hi Alison - really sorry to hear that you haven’t got a support group but glad to hear that you’re thinking of getting one started soon - as I said, Macmillan have some excellent booklets on starting a group (which I didn’t know about when I first got our group off the ground but maybe they weren’t around then!). Talking to your breast care nurse(s) can also help and it will just evolve as time goes by. Good luck x

Hi Liverbird,

I am in Liverpool aswell, and don’t know of any specific support groupd-I have secondaries. I don’t know if you have visitesd the Lilly Centre,-I ahve phoned them but have not had time to visit yet. They don’t have any support groups at the moment, but it might be worth talking to them.

If you need some help setting something up, let me know.

Nicky

Hi Jenny

Good to meet like minded people - I notice on your post that it says ‘whisper back’ but it’s come up in this main bit.

I’m part of the other website - are you? If so you can send me a private message for ‘Pinkdove’ under the secondaries forum. I’ll pick it up and we can correspond further on that site. I’m part of the secondaries closed forum on there but not under Pinkdove.

Our little group has come about by the fact that there are 6 of us in our primary support group who have secondaries but our needs aren’t being met there, which is a bit ironic in a way as I set the group up! But I also appreciate what it might potentially mean for those who have just been diagnosed with a primary.

Over the 10 years that our group has been in existence I have never known as many women with secondaries at the same time and 5 of us are going to meet today at a local restaurant. We’re not too sure about the 6th person as at the moment she’s draining us when we do see her so have taken the decision not to tell her at the moment. She’s currently seeing a psychologist up at the hospital.

Pinkdove

Hi
It does annoy me so so much about you not finding support in the group you set up because you now have secondaries.
This is exactely what i found in the support group i attended they wanted everyone to be ‘fine’ once DX. Also i did not want to sit playing bingo and attending drunken fund raising events with second rate entertainment it isnt me. Also i couldnt be positive all the time.
For goodness sake just because ladies get secondaries should they then ‘hide’ away and not mix with newly DX ladies.I for one am totally aware we are living with the possibility it can come back and take our lives. My mum and 2 fantastic friends died from it.
I am truly inspired by some of the ladies who have secondaries on here. I would be the first to be there for anyone with secondaries.

Bloomin shame on here you cant exchange email addys as Nicky i would love your help.
Unfortunately i am not on any other email groups except breakthrough BC where i have exchanged email addys but do not post regularily.

The group you mentioned i have been too and am willing to whisper you about my experiences.

Let me know and any way we can help each other it would be good.

Rx

Hi Liverbird

It is a shame we can’t talk openly about what’s going on for us but I can see both sides of it. We’ve now got a very informal secondaries group going (5 of us) and met for the first time yesterday and I think, in some ways, that probably suits us better.

We do, though, if anyone in the group asks us where we are with regards treatment etc tell them the truth and I think it does help them to dispel the fear when they see us and see us looking well at the moment. The times that I have been really unwell I tend to withdraw from attending the group as that’s what I prefer.

I just think it takes time really for people to realise that we’re all different - some will go on to develop secondaries and hopefully, for the majority, they won’t. It’s about learning to live with whatever stage we’re all at.

Take care.

Pinkdove