Support groups - any experience or opinions?

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TraciInLA
TraciInLA Member Posts: 1,994 Member
edited March 2014 in Breast Cancer #1
Hello, all -

6 months after finishing treatment, I'm finally starting to have a little more energy, and am feeling like I soon might be able to (slowly) start doing something besides work, eat, exercise, and sleep.

I was wondering about support groups, and thinking that we don't talk about them much here on this board. But I'd love to hear your thoughts: Have any of you attended and/or joined a live-and-in-person support group? What kind of group was it? What were your experiences?

Or do you prefer this online forum to face-to-face groups? If so, why?

I'm really interested in your thoughts and experiences, so thanks in advance for sharing!

Traci

Comments

  • New Flower
    New Flower Member Posts: 4,294
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    Hi Traci
    I have never attended any in person support group. Initially I did not think that I need one plus I underwent very rigorous treatment and was not able to drive around. I was going to join "Life after treatment" group but never made it. I was looking at Wellness community which has office in West Hills and We spark at Sherman Oaks. Never made it. Then I found this site and it completely satisfied me.
    I am still interested in meeting BC survivors I am not sure like to in a traditional group setting.
  • TraciInLA
    TraciInLA Member Posts: 1,994 Member
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    Hi Traci
    I have never attended any in person support group. Initially I did not think that I need one plus I underwent very rigorous treatment and was not able to drive around. I was going to join "Life after treatment" group but never made it. I was looking at Wellness community which has office in West Hills and We spark at Sherman Oaks. Never made it. Then I found this site and it completely satisfied me.
    I am still interested in meeting BC survivors I am not sure like to in a traditional group setting.

    Thanks for sharing your thoughts, New Flower
    It's so funny you would mention weSPARK in Sherman Oaks -- I work in Sherman Oaks, and I've been extending my lunchtime walks longer and longer, "training" for the Making Strides walk in August. A few days ago, I ended up walking right by weSPARK. The thought of walking in kind of scared me, so I didn't -- I'm just not sure I'm a support-group kinda gal....

    Traci
  • AMomNETN
    AMomNETN Member Posts: 242
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    Support Groups
    TraclinLA,

    I have attended support groups. I like them but have been unable to attend due to treatments. One I attend allows husbands to attend too. My husband likes that because he learns from the others there. The other one is women only, it is nice just to have others who have survived this to show there is life after breast cancer. They were of great help in the beginning and to go and help others who have just started the process. My first meeting they had a plastic surgeon give a presentation. As I said, I enjoy them. I hope this helps.
  • faith_trust_and_a_little_bit_of_chemotherapy
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    TraciInLA said:

    Thanks for sharing your thoughts, New Flower
    It's so funny you would mention weSPARK in Sherman Oaks -- I work in Sherman Oaks, and I've been extending my lunchtime walks longer and longer, "training" for the Making Strides walk in August. A few days ago, I ended up walking right by weSPARK. The thought of walking in kind of scared me, so I didn't -- I'm just not sure I'm a support-group kinda gal....

    Traci

    Hello Traci and New Flower
    As I waited to make an appointment at the Leavey Cancer Center in Northridge last week, an older woman finishing her radiation was gushing about the support group there. She went on about how fun and friendly and encouraging everyone can be. She was warm, and I don't mean from her treatments, and I found her genuine. Oddly, I have not found anyone going through this to be anything but sincere.

    I attended a support group a few years back for something unrelated to disease much less cancer and did not find the format particularly edifying. Long story short, the group dynamic works well for some, yet I was too aware that others were not having their needs met as some personalities dominated the meetings with the same issues that had been discussed the week before. I did not see a lot of forward progress and it ultimately seemed like a great waste of time for me. I have less time to waste now than I did then.

    If I may be so bold, and if we are all in the SFV, there are a zillion Starbucks where we might actually meet without the supervision and guidance of a Nurse Ratched. (You think maybe that's why I am a bit sour on the whole group thing?)

    ....and Traci, I'm not really yellow, but I was pretty darn grey after my first chemo, so any color is an improvement.
  • camsgram
    camsgram Member Posts: 106
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    Hi TraceyI think you should
    Hi TracinLA
    I think you should check it out and let us know! I'm just kidding. It's funny you brought this up, I just ask my onc nurse for a list of support groups. I am going to try to go at least once so I can form an opinion(actually I'll know within 30 seconds !)I have never been the group type (whatever that means) but really need to get back in the world. I have not worked since i got DX which was mid January. I need to get my groove back!
    If you check out a group I would love to hear about your experience. Good luck! Kathie
  • GregStahl
    GregStahl Member Posts: 188
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    I have
    tried to get Ruby to at least go to one or two if for nothing else but to meet new people outside of work and make some new friends who are dealing with some of the same things we are.
    I dont think the cancer support groups are going to be anything like AA or marriage groups where everyone sits in a circle and talks about thier feelings and sings Kumbahya (SP?) at the end...I would think its more casual atmosphere.
    Ruby has not been real interested, but she did get an ID here and post the other day. Was suprised and very happy that she did.
    Greg
  • Marcia527
    Marcia527 Member Posts: 2,729
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    I have not gone to face to
    I have not gone to face to face support groups because I wouldn't be able to talk about it to a real person. Remember the 'dog post' I said I was reserved. Now I have Parkinson's I've stopped driving. Plus I always hated routine where you have to be there at a certain day and time. This is why I hated bowling leagues. I loved working tho so ?

    This on-line stuff is just up my alley. hee hee...and I have a Wii to bowl at home too!
    Who said no man is an island?
  • MAJW
    MAJW Member Posts: 2,510 Member
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    Self support......no, it's not a bra.....
    Traci.........I was encouraged by my oncologist to attend, when treatments were all finished, the support group "Finding Your New Normal." I told me I wasn't interested in a group forum. I'm the type of person who needs to work things out for myself. I'd rather have solitude, peace and quiet when I am trying to figure out the rest of my life.....I do know of two who have attended, each went twice.....said it wasn't for them either....one said it was just to depressing, as there are women who are terminal and she felt she needed UPLIFTING instead.......I think if you're curious you should give it a try....let us know how it goes..lol I also told my oncologist about this website......he wasn't familiar with it....I told him I found this to be the absolute best place "to be" during and after the "journey"....

    Nancy
  • missrenee
    missrenee Member Posts: 2,136 Member
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    I have attended a couple of support group meetings.
    Hi Traci: I have attended a couple of meetings dedicated to breast cancer survivors. Like some of the others--I'm not really a women's group kind of girl--I much prefer one or two/three on one than a group. The women seem really nice and caring. However, I'm not sure I'm getting what I need from the group. Most have been attending for years, know each other well and it's more like a social hour for them. I did introduce myself and tell everyone my situation on the first day, and they were very supportive, but after that, more social. They also connect via email and there is one woman who is sort of the leader. I had a question that I asked her to circulate to all the members about my upcoming radiation. She did send the email to about 40 members and only 1 wrote back to me! Anyway, I don't know if I will continue with it. I really just need someone to talk to about the emotional and physical aspects of the journey. I do have an appointment with a therapist coming up. I'm thinking I don't have to always put on my "happy face" and positive attitude with her and I'll feel free to cry or rant and rave if I want to.

    Hope this helps you decide what to do. I always say, anything is worth a try.

    Renee
  • missrenee said:

    I have attended a couple of support group meetings.
    Hi Traci: I have attended a couple of meetings dedicated to breast cancer survivors. Like some of the others--I'm not really a women's group kind of girl--I much prefer one or two/three on one than a group. The women seem really nice and caring. However, I'm not sure I'm getting what I need from the group. Most have been attending for years, know each other well and it's more like a social hour for them. I did introduce myself and tell everyone my situation on the first day, and they were very supportive, but after that, more social. They also connect via email and there is one woman who is sort of the leader. I had a question that I asked her to circulate to all the members about my upcoming radiation. She did send the email to about 40 members and only 1 wrote back to me! Anyway, I don't know if I will continue with it. I really just need someone to talk to about the emotional and physical aspects of the journey. I do have an appointment with a therapist coming up. I'm thinking I don't have to always put on my "happy face" and positive attitude with her and I'll feel free to cry or rant and rave if I want to.

    Hope this helps you decide what to do. I always say, anything is worth a try.

    Renee

    Dear Renee
    I connected with a couple of breast cancer survivors through my daughter of all places. She was chatting with a friend on Facebook after my diagnosis and starting asking me some very pointed questions...seems one her friend's mom is a survivor and wanted me to know I could call her anytime for information. I met her and another survivor for coffee. Before I had finished my latte, I had two appointments for second opinions and a foot in the door at City of Hope. These two women reminded me that it's my body and that I should ask for copies of everything every step of the way. I felt completely empowered by them and they took the edge off a very frightening time for me. I whole heartedly agree that you need to let your hair down with a few kindred souls that know your journey. I was even recently assured by one of these women that sobbing in the wee small hours of the morning be it my bedroom or my shower is OK and not as unusual as I may have thought.

    You just reinforced my own reluctance as to the value of a support group. The dynamic of the group that you are describing is one of people that identify with their cancer...it's something that is part of us for the rest of our lives, but I firmly believe it does not define us. Static groups can't grow, and they missed an opportunity to move forward by essentially excluding you.

    Renee, I am grateful you have this forum to express yourself and share. Don't put on a happy face, and as far as I am concerned stay in your pjs. As women many of us were guided in the direction of making everybody else comfortable. Not that you need my permission, but it's your turn to rant and rave...knock yourself out, sister.
  • Balentine
    Balentine Member Posts: 393
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    Dear Renee
    I connected with a couple of breast cancer survivors through my daughter of all places. She was chatting with a friend on Facebook after my diagnosis and starting asking me some very pointed questions...seems one her friend's mom is a survivor and wanted me to know I could call her anytime for information. I met her and another survivor for coffee. Before I had finished my latte, I had two appointments for second opinions and a foot in the door at City of Hope. These two women reminded me that it's my body and that I should ask for copies of everything every step of the way. I felt completely empowered by them and they took the edge off a very frightening time for me. I whole heartedly agree that you need to let your hair down with a few kindred souls that know your journey. I was even recently assured by one of these women that sobbing in the wee small hours of the morning be it my bedroom or my shower is OK and not as unusual as I may have thought.

    You just reinforced my own reluctance as to the value of a support group. The dynamic of the group that you are describing is one of people that identify with their cancer...it's something that is part of us for the rest of our lives, but I firmly believe it does not define us. Static groups can't grow, and they missed an opportunity to move forward by essentially excluding you.

    Renee, I am grateful you have this forum to express yourself and share. Don't put on a happy face, and as far as I am concerned stay in your pjs. As women many of us were guided in the direction of making everybody else comfortable. Not that you need my permission, but it's your turn to rant and rave...knock yourself out, sister.

    Definitely Yes on the cancer support groups
    Traci,
    Yes I have been attending a cancer support group although we only meet once a month. It would be nice to meet twice a month but that is why I also come here to CSN on a daily basis. It is very supportive to talk face to face with others who can empathize with what you are feeling just as it is here but it is more personal because you can actually sit down physically and talk with one another. Strength is in numbers my friend and being of the same heart and mind and building one another up is the key.
    Lorrie
  • chenheart
    chenheart Member Posts: 5,159
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    I have never been part of a
    I have never been part of a physical support group~ it has never called my name, for some reason. I belong to a Women's Mystery Book Club~ we meet once a month and I love that! It is completely unrelated to cancer, and we talk about how we loved/hated/didn't care about a particular book we read. It is such a breath of fresh air for me, I can't tell you! They don't know about my health, and I don't know about theirs! It is Ostrich Therapy at its finest!

    This place, on the other hand is perfect for my cancer support needs! I can come in at 2AM, I can read a particular post or not, discuss something or not, or not come in at all! And no one knows but me. I can be 'selfish" and not respond, or be totally giving and respond to 99% of the posts, or just quietly reflect on my life and the lives of those connected to me here on the boards. It is wonderful when I can't sleep, when I have a joke, when I want to be distracted, when I am sad, while alone in my pajamas, or while Reggie is watching the golf channel. There is no right or wrong time for this place to be available. For a minute or an hour. And that works for me just fine!

    Hugs,
    Chen♥
  • New Flower
    New Flower Member Posts: 4,294
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    Marcia527 said:

    I have not gone to face to
    I have not gone to face to face support groups because I wouldn't be able to talk about it to a real person. Remember the 'dog post' I said I was reserved. Now I have Parkinson's I've stopped driving. Plus I always hated routine where you have to be there at a certain day and time. This is why I hated bowling leagues. I loved working tho so ?

    This on-line stuff is just up my alley. hee hee...and I have a Wii to bowl at home too!
    Who said no man is an island?

    Marcia I loved that post
    about"live like a dog" I wanted to respond but lost it.
  • cavediver
    cavediver Member Posts: 607
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    try it for yourself...
    I went to a support group...I had just finished chemo #1 and thought it a good idea to get support and information. Well, the group announced me as new, asked my status, I told them I had just started pre-surgery chemo etc.........my voice cracked cause I was still emotional and in shock over the dx. The 'meeting' was announcements of fundraisers and social events )cruise, day trips, dinner outings), then they had a guest speaker on vitamins. After the meeting, no one came over to say anything to me....I left alone and with no support given. I read this particular group as more of a social networking group...dinners and luncheons out etc. This was not what I was looking for. This site is fantastic for support, answering questions, and available 24/7! But, I might try another support group, not sure. I am sure they are all different...the people make the difference. So, I would say, give it a try........you might find one that suits your needs. Good luck
  • roseann4
    roseann4 Member Posts: 992 Member
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    cavediver said:

    try it for yourself...
    I went to a support group...I had just finished chemo #1 and thought it a good idea to get support and information. Well, the group announced me as new, asked my status, I told them I had just started pre-surgery chemo etc.........my voice cracked cause I was still emotional and in shock over the dx. The 'meeting' was announcements of fundraisers and social events )cruise, day trips, dinner outings), then they had a guest speaker on vitamins. After the meeting, no one came over to say anything to me....I left alone and with no support given. I read this particular group as more of a social networking group...dinners and luncheons out etc. This was not what I was looking for. This site is fantastic for support, answering questions, and available 24/7! But, I might try another support group, not sure. I am sure they are all different...the people make the difference. So, I would say, give it a try........you might find one that suits your needs. Good luck

    I attend ECaP meetings.
    Dr. Bernie Seigel started Exception Cancer Patients which is a support group for people surviving and/or living with cancer. He wrote many books including, "Love, Medicine and Miracles". His groups are all over the country so check to see if there is one in your area.
    For me, meeting with others and talking face to face has been helpful. Our group talks about survival behavior like being an advocate for yourself, saying no when you don't want to do something, etc. Important stuff!

    Roseann
  • TraciInLA
    TraciInLA Member Posts: 1,994 Member
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    roseann4 said:

    I attend ECaP meetings.
    Dr. Bernie Seigel started Exception Cancer Patients which is a support group for people surviving and/or living with cancer. He wrote many books including, "Love, Medicine and Miracles". His groups are all over the country so check to see if there is one in your area.
    For me, meeting with others and talking face to face has been helpful. Our group talks about survival behavior like being an advocate for yourself, saying no when you don't want to do something, etc. Important stuff!

    Roseann

    Thank you, all
    It's so interesting to read your different experiences and attitudes towards support groups.

    When I was first diagnosed, my OB/GYN warned me to avoid any groups that are not led by a trained mental health professional, for the same reasons some of you have shared. All the groups at the cancer support center I'm looking into are led by a licensed therapist or social worker, so I can probably expect at least a minimum level of facilitation.

    Walking into a group of people I don't know is right up there with the Scariest Things In The World for me, so we'll just have to see if I'm feeling brave....Like some of you, part of me thinks, with the support we all give each other here, why do I need to gird my loins and try this? On the other hand, the universe put a free cancer support center within walking distance of my office -- maybe it would be ungrateful not to at least check it out.

    On a side note...I'm surprised at how many of us in the San Fernando Valley keep finding our way here! New Flower and faith_trust: I'm wondering if either of you are interested in the Making Strides San Fernando Valley walk in August? I'm signed up, I'm committed, I'm doing it! I'll send you both a PM in just a minute, so we don't bore everybody else here.

    Traci
  • Christine Louise
    Christine Louise Member Posts: 426 Member
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    Exercise group
    For a while before chemo made me too tired, I went to a stretching class that was good. Nobody talked about their health, just joked and groaned while doing gentle stretches led by a charming woman. It's at a local cancer support center.

    It helped me to see others who, although they didn't say it, were obviously post-surgery or in various states of survivorship. I liked the comradeship and activity and didn't want the talk. I'll start going again soon.
  • New Flower
    New Flower Member Posts: 4,294
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    Hello Traci and New Flower
    As I waited to make an appointment at the Leavey Cancer Center in Northridge last week, an older woman finishing her radiation was gushing about the support group there. She went on about how fun and friendly and encouraging everyone can be. She was warm, and I don't mean from her treatments, and I found her genuine. Oddly, I have not found anyone going through this to be anything but sincere.

    I attended a support group a few years back for something unrelated to disease much less cancer and did not find the format particularly edifying. Long story short, the group dynamic works well for some, yet I was too aware that others were not having their needs met as some personalities dominated the meetings with the same issues that had been discussed the week before. I did not see a lot of forward progress and it ultimately seemed like a great waste of time for me. I have less time to waste now than I did then.

    If I may be so bold, and if we are all in the SFV, there are a zillion Starbucks where we might actually meet without the supervision and guidance of a Nurse Ratched. (You think maybe that's why I am a bit sour on the whole group thing?)

    ....and Traci, I'm not really yellow, but I was pretty darn grey after my first chemo, so any color is an improvement.

    Traci & Faith-trust
    I like the idea. We have Starbucks at every corner.