Has anyone ever started a local support group?

katefm
katefm Member Posts: 112 Member
edited March 2014 in Colorectal Cancer #1
Hi guys-

I wondered if any of you have ever started a local support group? We're seriously considering starting one - there are currently 3 support groups here - 2 for women only, and 1 through the hospital that's open to any kind of cancer survivor and their caregiver/family/friends.

We went to the one group available to us, and while they were incredibly supportive and motivating, they face a different set of challenges than we are facing now. When we walked in, they sort of looked at us like "are you lost?!" - they we stunned (and again, completely awesome) when they heard about Jim's cancer. The talks are all organized - there's a little free time to talk at the end, but there's always a theme to the group. We are by far the youngest people in the group - there's not a person a day under 70. Jim and I are 37 and 34, respectively. We're got a little girl and a baby boy...I just don't know that these people would be running into the same kind of issues...trying to coordinate preschool drop-offs during chemo, etc.

SO, with that rather long bit of background...does anyone have any suggestions for me? How do I attract people to the group that are closer to our age? Do all of the talks have to have a theme? It seems to me that it would be nice to have coffee and chat about life...not just cancer. (Or chat about life WITH cancer!)

I'd love to hear any words of wisdom!

Thanks-
Kate

Comments

  • StacyGleaso
    StacyGleaso Member Posts: 1,233 Member
    #2
    Hi Kate!

    I work at a law firm which specializes in Medical Malpractice. The attorney I work with insisted I start a cancer support group with both clients and members of the community who could benefit from such a group. He just LOVES telling folks about my getting through stage 4 cancer in hopes of raising their spirits with their battles. (It used to embarrass me, now I just roll with it!) In order to have folks feel comfortable about attending and sharing information, it started out as a few small groups. It turns out where we have meetings twice a week, lasting about 2 hours a night, but usually running a little bit over. We have guest speakers, too. The attorneys will do wills for members for free. This is a good thing for everybody, really, not just those who actually had/have cancer, but also their caregivers. The reason for two meetings is that it's more accommodating to folks' schedules. I would say that the average meeting has 17-25 people.

    I started it up by letting my oncologist's office know that I was doing it. I ran into tons of younger folks back in my chemo days. The meetings include everything from sharing stories about families, to what works for nausea, to deeper things like life and the universe. One of my sisters, who is crafty, taught crochet and knitting to a few who were searching for something to do while getting their chemo @ the oncologist's office. Initially, I thought people would not want something like this, but the response has been amazing.

    E-mail me through this site if I can help in any way.

    Best of luck, sounds like a GREAT idea!

    Stacy

    P.S. Several people made really good friends and meet outside the formal support group, just like folks on this site do!
  • 2bhealed
    2bhealed Member Posts: 2,064 Member
    #3
    hi Kate!

    I saw on one of your previous posts that you live in Sheboygan. I'm originally from Racine! And we got our two Westie pups from sheboygan years ago. (they are no long alive). :-(

    Anyway, I haven't started a support group per se, but have been to a couple (not where I live now). The first group was at a church and one of the "moderators" was a nurse and had never had cancer. The other women were all survivors of some sort. I was the only colon and was the youngest too. (39)

    I brought a bunch of my reference books to share with folks and the nurse was very patronizing and condescending about it. There a woman who was really struggling and crying and everyone just sat there. No one really knew what to do. I reached over and took her hand to lend comfort but most everyone just sat there.

    I didn't really fit in and felt that there needed to be some sort of group leader who knew more about this kind of stuff so that women like the one crying didn't leave feeling even more alone (or like me who left feeling more alone since I was the only one doing any alternatives and was looked at with skepticism).

    So then I went to another group that was only into alternatives that met a a woman's house. I went a few times but it didn't really do it for me either. So i figured I needed to start one myself. I approached the ACS rep at our Relay for Life but he was NO HELP at all and had NO CLUE that there wasn't even a support group in our area. Hello?

    So all of this to say, GOOD LUCK with starting one. You are doing a good thing!! I believe strongly in support groups and have been to them for other issues.

    I would think if you put an ad in the paper or notices in church bulletins you would get something started and word of mouth would get things going....especially if you are advertising a younger group.

    There are plenty of breast cancer groups but where does a younger person find support for colon cancer? They are hard to come by.....I surely haven't found any.

    Keep us posted!

    peace, emily who gave up on starting a support group and instead started a juicing workshop at the coop! :-)
  • rthornton
    rthornton Member Posts: 346 Member
    #4
    2bhealed said:

    hi Kate!

    I saw on one of your previous posts that you live in Sheboygan. I'm originally from Racine! And we got our two Westie pups from sheboygan years ago. (they are no long alive). :-(

    Anyway, I haven't started a support group per se, but have been to a couple (not where I live now). The first group was at a church and one of the "moderators" was a nurse and had never had cancer. The other women were all survivors of some sort. I was the only colon and was the youngest too. (39)

    I brought a bunch of my reference books to share with folks and the nurse was very patronizing and condescending about it. There a woman who was really struggling and crying and everyone just sat there. No one really knew what to do. I reached over and took her hand to lend comfort but most everyone just sat there.

    I didn't really fit in and felt that there needed to be some sort of group leader who knew more about this kind of stuff so that women like the one crying didn't leave feeling even more alone (or like me who left feeling more alone since I was the only one doing any alternatives and was looked at with skepticism).

    So then I went to another group that was only into alternatives that met a a woman's house. I went a few times but it didn't really do it for me either. So i figured I needed to start one myself. I approached the ACS rep at our Relay for Life but he was NO HELP at all and had NO CLUE that there wasn't even a support group in our area. Hello?

    So all of this to say, GOOD LUCK with starting one. You are doing a good thing!! I believe strongly in support groups and have been to them for other issues.

    I would think if you put an ad in the paper or notices in church bulletins you would get something started and word of mouth would get things going....especially if you are advertising a younger group.

    There are plenty of breast cancer groups but where does a younger person find support for colon cancer? They are hard to come by.....I surely haven't found any.

    Keep us posted!

    peace, emily who gave up on starting a support group and instead started a juicing workshop at the coop! :-)

    Here in Atlanta there is not, that I have been to anyway, a support group specifically for colon cancer patients (I've been told that such a group exists, but I've not been to any meetings). There is, however, a wellness center that offers free yoga classes for cancer patients. I went there once to get the free yoga class, but first they made me sit through this self-introductory session. I was a 35 year old guy with stage IV colon cancer surrounded by significantly older women that all had breast cancer and were mostly talking about end-of-life issues. I remember that a couple of them were talking about not seeing their children get through graduate school, and I was thinking "hey, I'm IN graduate school!" It was thoroughly depressing to me, since I was more in a overcoming-and-surviving-cancer state of mind. When the time came to introduce myself, I politely left and I haven't been back to a support group since. But a couple of people have suggested to me that I start a group for, specifically, colon cancer patients, or perhaps, specifically, younger cancer patients, or maybe, specifically, younger colon cancer patients. So many niches to fill, but I don't know if there is a large enough population here to support a support group. Anyway, I'll be interested to hear what happens with your effort to start a group.

    Rodney
  • Unknown
    Unknown
    #5
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  • shmurciakova
    shmurciakova Member Posts: 906 Member
    #6
    I have never been to a support group or tried to start one up, because I live in a rural area and I am pretty sure there are no other young colon cancer survivors around here. As a matter of fact I only know of one other "young" survivor of leukemia.
    However, you could contact the CCA (colon cancer alliance) because I seem to recall they have some sort of program for starting groups in your area. You could also contact colonclub.org which is a website like this one, but it is specifically geared towards young colon cancer survivors. Two young women started the site and they could probably give you some helpful advice.
    Cheers,
    Susan
  • MarkWalz
    MarkWalz Member Posts: 58
    #7
    Kate,
    When you find out any information about starting one, please let me know. I have asked and asked about this. I also agree with the others on this posting. It seems like everyone looks at you so strangely when you ask about starting one. I have asked two hospitals in my area, neither one has one. So keep on fighting. I am 53, but would love to be in a group with you and to support you and your family.
    Mark
  • katefm
    katefm Member Posts: 112 Member
    #8
    Thanks everyone for your suggestions! Or for your stories of support groups that you weren't comfortable joining. That helps me just as much - it gives me a goal for the kind of atmosphere that we want to create. (ie. no nurses giving us nasty looks for sharing books!)

    I am excited about the prospect of starting this group. Jim is getting his chemo through a wonderful clinic that has an annual survivor's picnic every year - last year there were more than 400 people there. I have to believe that at least some of them were in the 25-55 age range! I've already found two other cancer survivors that are interested in helping me with the group - one of them survived stage II colon cancer and the other survived stage IV lymphoma. They are both around 35-45 I would guess - and very spirited people!

    I'll let you know about my progress. I hope it works out. Even if it doesn't, we've already made two other friends who have slayed the dragon!

    Cheers,
    Kate
  • JADot
    JADot Member Posts: 709 Member
    #9
    Hi Kate,

    My hats off to you for thinking about this.

    I run a book club and partipate in a walking-marathon training, it's a TOOOONNNNN of work to keep it all going smoothly. I keep it as informal as possible, but still, at times it gets stressful. So if you really are thinking about doing this, make sure you budget a lot of time for it.

    Best of luck,
    Ying
  • moniquebar
    moniquebar Member Posts: 57
    #10
    Hello Kate,

    I remember my first meeting with my oncologist and when I asked him if there was a colorectal cancer support group he replied, Um, no.

    Um, why not?

    According to my doctor, who actually had the decency to look a bit chagrinned, there was not any great call for a colon cancer support group. I then glanced at a support group poster on his wall and noted that there were two breast cancer support groups, one for older women and one for younger women, a prostate cancer support group, a childrens club, a brain tumour support group, a lymphoma and leukemia support group, a women with metastatic cancer support group, a relaxation support group for patients and their families, and an ovarian cancer support group, yet, lo, no groups directed specifically at colorectal or lung cancer.

    I have since wondered if this is because colon cancer and lung cancer, the top two most common types of cancer, are still considered embarrassing diseases. That is to say that neither disease receives the same amount, or the same kind of press, as breast or prostate cancer. Whatever the reason I am certain that I would have benefited talking to people who were going through what I was. However, when I looked at some recent cancer stats (the latest were gathered in 2003) for my city, not one person in my age group (20-39) was diagnosed with colon cancer. I must say that one of the toughest things about this disease is how alone I have felt. Good luck with your venture.

    Monique

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