Support group advice

Barbara2 · 08-22-2011, 10:01 AM

I have a friend who has asked me to help her start a breast cancer support group here in our little community of about 2,500 people. Our nearest support group is about 40 miles away.

I am wondering how many people who visit Her2+ Support, also attend a support group in their community. I will be willing to help her get this started, but I really wonder if I would care to attend. (BTW, she also has Her2+ breast cancer, but has never cared to research or go to this website.)

When finishing chemo in 2003, I started searching the internet for info on this Her2+ breast cancer that falls into the 25% bracket of breast cancer. I knew it was unique and wanted to find out as much as I could about this type of cancer. I eventually found this site, which I believe may have had a different name at the time. I have never felt I needed any more of a group-type support than what was found here at the Her+ Support site. It gave me everything I needed. Knowledge, advice, friendships, courage, hope…and the list goes on and on. (THANK YOU, CHRISTINE and of course JOE)

I don’t know much about the local support groups; what the meetings consist of, etc. and maybe the friendships that are established would make it a good option. If you have any thoughts/experiences, I would appreciate hearing what you think.

Thanks!

Sheila · 08-22-2011, 10:31 AM

Barbara I belong to a local support group that is 20 miles away. It is a good group of breast cancer survivors, but they get together more for friendship I think....I am like a human oddity being Stage IV and being in treatment this long...they do not know that this is the case for many survivors in this day and age. Most of them have not had a treatment or oncology visit in over 5 years, some 10 years. I am like you, I get more on the Her2Support web site than i would ever get anywhere else.....when you have the best, you stick with it!

BonnieR · 08-22-2011, 12:12 PM

Barbara, you pose a very interesting question! As a former psych nurse, it got my attention especially. Because groups can have down sides, too, depending on their focus.
The ones I attend (or have attended) are conducted by professionals. Alot of issues can come up and alot of misinformation can be passed around if not facilitated. I once went to a few that were "chats" and I knew people were saying things that were inaccurate and misleading.
The beauty of this board, and others like it, is that we have a large enough pool of members who have done their homework on ONE type of cancer that we can police ourselves. With so many forms of breast cancer out there, it is easy for people to think one size fits all, regarding treatment etc and give advice to others that is not appropriate.
Having said all of that negative stuff, I think the idea of a support group is a good one, if it stays on the social side. Lunch together, that sort of thing. And just general sharing. OR, where do you all receive treatment? Is there a social worker on staff who might be approached to conduct a group?
The friendship and support of others is a great thing.
Keep the faith

DeenaH · 08-22-2011, 04:06 PM

I do go to a local support group. It is facilitated by an integrative md. I have gotten invaluable info from this group. I don't know that I would go to a group not run by a professional. Maybe if I go into remission because I feel educated enough about navigating the medical system that I could be of help to others.

Jackie07 · 08-23-2011, 04:09 AM

I attended our hospital-sponsored breast cancer support group one time and was deeply disappointed. The only 'member' there appeared to be a 'whiner' who was playing the role of a 'victim' and the social worker (a man) was trying hard to re-direct her constantly. I couldn't help but wonder if she's the reason why there're no other survivors present.

She wanted the social worker to get a compression sleeve and glove like the ones I was wearing. I almost felt guilty to have caused more trouble to the social worker. There was no 'group dynamic' because she's demanding all the attention. I felt so sorry for the social worker because we've known him for a long time, both in the hospital corridors and our neighborhood walking/biking trail. He had managed to drop almost a hundred lbs within 3, 4 years.

I like our online group setting because it eliminates the distractions - here we can focus on the topic and the discussion. I know myself gets distracted easily in a group setting and/or become bored quickly during a lecture.

Pam P · 08-23-2011, 06:15 AM

I attended a support group years ago. I was facilitated by a chaplain and an oncology nurse. Good leaders. The nurse could verify & correct info. We met for a few years then the facilitators got new jobs out of the area and the group ended. I looked a bit for a new group but couldn't find much. I think this was a unique group - just dx to stage IV, about 8 people. One woman passed just before the group ended. It was a blow and we didn't recover the group after that. I did get a lot of support and sharing with people with same situations and fears. I do value this online support much much more.

Barbara2 · 08-24-2011, 05:43 PM

Thanks for your replies and suggestions. I agree…stick with the best, and this is it (Her2+ website). And, as you said, the fact that we all share the same type of cancer, makes us unique; we don’t have to sift through loads of information to find something that pertains to us/Her2+. And yes, it eliminates distractions, plus we are free to go to the group anytime day or night, whenever the time is right.

In terms of the “other” groups, one that is conducted by professionals would keep the topic in focus and stop misinformation. It seems that without that professional, the focus would probably be more of a social event, although some people would surely be seeking information, too.

So, we will see where this goes. Nothing will ever be attempted, if all possible objections must be first overcome. ~Samuel Johnson, Rasselas, 1759

BonnieR · 08-24-2011, 06:31 PM

I suggest you all just go out to lunch once in awhile and keep the topic light!
Keep the faith.

sarah · 08-25-2011, 08:24 AM

Hello,
I also was asked to help start an English speaking support group here in southern France by a psychologist who had cancer patients who needed support in English so I did. We meet once a month in the conference room of a cancer hospital. We always have an oncologist and psychologist present. We are available by email and phone also.
Our members come from all countries including France (they prefer us to the French support groups for some reason). We tend to be an upbeat group of survivors. However we lost a therapist right at the start to lung cancer and have since lost 2 other members to BC and one survivor's son committed suicide, all of which has been sad for us but because we are like a family it has helped us all come through it, especially the carers of those that passed away. We also had a financial emergency with a new member - something we were not expecting to need to deal with or equipped to deal with but we managed and found the throat cancer patient a caravan to live in free and money for food, the French system paid for his medical treatment since he had fallen ill while visiting France. So I would say it's a good thing to do if you have good support. Sometimes people just appreciate someone to listen which is what we have all learnt to do through "training" by our therapist and psychologist members. Medical advice is obviously something we do not give, although we will state what has helped us with side effects, etc. Mainly we feel our purpose is to give moral support and as our motto says "You are not alone" to be there for people.
So I would urge you to give it a try. I love everyone in my group, they are a family to me, as I feel the people on HER2 are to me and I know "I am not alone" because of them and because of you and so if I can help someone else through a difficult period, it is my joy to do so. I stay in contact with some of our past members to make sure they're ok but part of me is pleased that they have moved on and don't need us anymore.
Health and happiness
love sarah

Barbara2 · 08-25-2011, 02:31 PM

Bonnie, your reply brought a big smile. The lady who wants to start a group was asked to do so by two other ladies. It sounds like for our first meeting we will just get together and talk about how to set up the group, and lunch on the side would be fitting! The lady who asked me to help, told me that I am good at finding "stuff" so she was asking for an assist for what could be an assortment of things.

Our community is very small. We have ONE oncologist that serves 1/4 of South Dakota, plus some folks from neighboring states. I'm thinking our group will be small as well, but that is not to say it wouldn't offer support to it's members.

Sara, your assignment was a big one, and it sounds like you pulled it off very well. Holding your meetings at a hospital helped to keep the meeting on a professional level, and having an oncologist and psychologst on board would be ideal. Good for you for your desire and enthusiasm to make it happen. "You are not alone" is a great motto, and we may us it also.

sarah · 08-26-2011, 08:17 AM

Hello Barbara,
Thanks for your kind words about our group and yes, with pleasure use our motto! We are planning a new website but for now it is:
www.csg06.therivierawoman.com should you wish to check us out. yes we're lucky to have the hospital there behind us and professionals. we also have volunteers doing meditation and art classes as well as one on one psychological meetings with our psychologist. We have a large ex-pat community here and we feel we aren't reaching everyone who may need this help and that's our challenge - to get the word out more without a budget!!! I think every cancer patient needs someone to talk to who's going through or has been through cancer so size isn't important, just a friendly voice. I know I was lucky to have a cancer buddy to talk to and we are now great friends - she's visited me here in France.
Health and happiness
love sarah

MJo · 08-26-2011, 04:32 PM

I am six years out and I go to the Wellness Community. During treatment, when I could, I went to weekly support group for people in treatment. All cancers were in the group. When treatment was over, I joined a breast cancer survivors group. You had to be a few months out treatment. It meets twice a month and has a paid, professional facilitator. She's a licensed MSW. However she's very down to earth and is very much part of the group. Longest survivor in there is 10 years. We don't have any kind of agenda or curriculum. A lot of the time we don't talk about cancer at all. We've had a few recurrences and all agreed the women should stay in group if they want to. We're on Facebook--Friends On The Mend

sarah · 08-26-2011, 11:08 PM

Hello MJo,
great will look for it. not too keen on Facebook - wants me to be "friends" with the world!!!
We're also on FB but I don't check there, only our message boards.
our longest survivor is 25 years out BC not HER2 and did a severe diet at the beginning and still into homemade fresh juices.
health and happiness
sarah