still can't find a support group

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Betsy13
Betsy13 Member Posts: 185
edited March 2014 in Breast Cancer #1
I have been searching in my area since last Feb. and there is no support group closer than 50 miles away. NO ONE should go through this alone. I am alone. I read these great stories about one woman came home from the hospital and her friends and cleaned her house from top to bottom; another woman said that she had someone to take her to radiation and take her home; another one said that her in-laws were indespensible; yet another about her best friend drove 400 miles every other week and brought her 2 weeks worth of dinners...I feel so sorry for myself because I have had none of that. No one did anything to help. I am starting over making new friends. I still feel like crap. I still have zero support at work. I still can't take time off to get rested. I am so afraid that I am going to keel over dead. But what really scares me is that no one will care. I will not be missed. I am alone and lonely. I hurt so deep in my soul that I don't know what to do. There is no group or person to help me through what I feel now. Barbara Delinsky sent me a copy of her "Uplift" book and I couldn't read it because it depressed me so much. Life is unbearable and I don't know where to turn. My husband gets mad at me now because I am so exhausted when I come home from work Friday night that I don't want to do anything. It's like yeah, you had cancer, no big deal. My life will never be the same, yet it seems to me that they don't want to have a clue. I don't know. I just don't know what to do or where to turn for help. I thought I'd vent here again. Life can be hard sometimes, but should it be this hard?

Thanks for listening,
Betsy
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  • KathyLQ
    KathyLQ Member Posts: 100
    #2
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    "Breast Cancer Husband", by Marc Silveris written for the partner, (but I read it myself and found helpful information in it for me too. (subtitle: How to Help your wife (and yourself) through diagnosis, treatment, and beyond.)

    CancerLifeline have cancer support groups all across the Nation. I went to one in my area, just for breast cancer, and I do think it will be an ongoing thing for me.
  • ladyg
    ladyg Member Posts: 1,577
    #3
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    Betsy maybe you
    can find someone here on the boards that lives in your area. I am sure that most of us would like to be able to help you. Has your husband gone with you to your dr. so that he can find out that what you are feeling and being tired is all a part of what the beast does to us? You need to take care of yourself and try to get rested. I know from experience that the fatigue can be bad. I thought I could keep on working and pushed myself so hard that I ended up having to take 10 days off and then start at 4 hours a day and work my way back up. It was not fun so please be careful.

    Hugs,
    Georgia
  • disneyfan2008
    disneyfan2008 Member Posts: 6,583 Member
    #4
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    how far is your cancer ctr?
    Mine is only 15 mins from work..they had many support groups..only thing is they were during the day...and I worked the whole time...so i just met with counselor on my melt down days...

    good luck...
  • disneyfan2008
    disneyfan2008 Member Posts: 6,583 Member
    #5
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    not sure if this will be any help
    info@supportconnection.org
  • Betsy13
    Betsy13 Member Posts: 185
    #6
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    KathyLQ said:

    "Breast Cancer Husband", by Marc Silveris written for the partner, (but I read it myself and found helpful information in it for me too. (subtitle: How to Help your wife (and yourself) through diagnosis, treatment, and beyond.)

    CancerLifeline have cancer support groups all across the Nation. I went to one in my area, just for breast cancer, and I do think it will be an ongoing thing for me.

    Thank you!
    I will contact cancerlifeline.org and pray they have a group in my area. I have never heard of them.

    Thank you, thank you.
  • Betsy13
    Betsy13 Member Posts: 185
    #7
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    disneyfan2008 said:

    how far is your cancer ctr?
    Mine is only 15 mins from work..they had many support groups..only thing is they were during the day...and I worked the whole time...so i just met with counselor on my melt down days...

    good luck...

    cancer center
    My cancer center is only 20 minutes from where I live. They have one group session, for any kind of cancer, once per week, during the day. Like you, I can't make it. The counselor there was so difficult to get in to see that I saw her once and never re-scheduled. She was ok, but I think I was so frustrated, that I had already given up.

    Thank you!
  • Betsy13
    Betsy13 Member Posts: 185
    #8
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    disneyfan2008 said:

    not sure if this will be any help
    info@supportconnection.org

    site
    I tried to find this site, but couldn't. Can you give me any more information, please?

    Thanks.
  • Sher43009
    Sher43009 Member Posts: 602 Member
    #9
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    Betsy13 said:

    site
    I tried to find this site, but couldn't. Can you give me any more information, please?

    Thanks.

    ASC
    Have you tried your local ASC? They have a 24 hour hotline so if you can't travel to them maybe you can talk on the phone?? I hope you feel better soon.
  • Kat11
    Kat11 Member Posts: 1,931 Member
    #10
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    Betsy13 said:

    site
    I tried to find this site, but couldn't. Can you give me any more information, please?

    Thanks.

    Betsy I am sorry you are
    Betsy I am sorry you are feeling so down and out, We are here for you. Hope we can find something in your area so you can have more of a one on one. Hugs
    Kathy ~
  • New Flower
    New Flower Member Posts: 4,294
    #11
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    KathyLQ said:

    "Breast Cancer Husband", by Marc Silveris written for the partner, (but I read it myself and found helpful information in it for me too. (subtitle: How to Help your wife (and yourself) through diagnosis, treatment, and beyond.)

    CancerLifeline have cancer support groups all across the Nation. I went to one in my area, just for breast cancer, and I do think it will be an ongoing thing for me.

    Betsy, I am sorry
    I still believe the best choice to stay with us, here. Support from family and friends has disappeared as soon as invasive treatment was finished. Even oncologists do not understand how difficult first year after treatment is.
    Unfortunately, many of us are having difficult time. Read this post http://csn.cancer.org/node/208037.
    Wishing you happy holiday and real break from work and stress.
    New Flower
  • Brooklynchele
    Brooklynchele Member Posts: 123
    #12
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    Supprot group
    Betsy - where are you located? I have a similar problem with the support groups in my area being held during the week when I am unable to attend.
    Hugs,
    Michele
  • Betsy13
    Betsy13 Member Posts: 185
    #13
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    New Flower said:

    Betsy, I am sorry
    I still believe the best choice to stay with us, here. Support from family and friends has disappeared as soon as invasive treatment was finished. Even oncologists do not understand how difficult first year after treatment is.
    Unfortunately, many of us are having difficult time. Read this post http://csn.cancer.org/node/208037.
    Wishing you happy holiday and real break from work and stress.
    New Flower

    New Flower
    Huh...never had support from family or friends so there was nothing to disappear. My husband and kids were it. Found out I actually have no friends. Two friends through the whole thing, one having her own health issues and one who lives 3 hours away. They are still there as much as possible. My husband and kids are sick of me being sick...they just don't get it.

    Thanks for the post, I will read it.

    Merry Christmas,
    Betsy
  • Betsy13
    Betsy13 Member Posts: 185
    #14
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    Brooklynchele said:

    Supprot group
    Betsy - where are you located? I have a similar problem with the support groups in my area being held during the week when I am unable to attend.
    Hugs,
    Michele

    Midwest
    I'm in Kalamazoo, MI
  • cinnamonsmile
    cinnamonsmile Member Posts: 1,187 Member
    #15
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    i understand
    i really understand where you are coming from and i feel for you. if you have a local United Way you could try them, or the salvation army, your local american cancer society chapter, perhaps tell your cancer drs your dilemma. they may not be able to provide the help themselves but they may be able to point you in a direction of someone or agency who can help.it is sad that your husband isnt more supportive and understanding, my best friends husband was the same way only worse. i am learning that unless you have had had or have cancer you have no clue what its like to have cancer. good drs may be able to emphathize with you but they still dont know. its the same way with people, good, caring understanding people could emphathize but have no idea until they have it. if nothing else, you could try a counselor, i know that means another appt and more running around but it would be a caring,lving being who cares about you at least for an hour. or if you need someone to chat with, the cancer survivor network does have a chat room to live chat with people. i hope you call around, some one, some where has an answer for you. and yes it does suck that with a major illness sometimes we have to do so much extra to be our own advocate. i am not into prayer, but i will certainly send you warm wishes and luck...
  • Betsy13
    Betsy13 Member Posts: 185
    #16
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    cinnamonsmile said:

    i understand
    i really understand where you are coming from and i feel for you. if you have a local United Way you could try them, or the salvation army, your local american cancer society chapter, perhaps tell your cancer drs your dilemma. they may not be able to provide the help themselves but they may be able to point you in a direction of someone or agency who can help.it is sad that your husband isnt more supportive and understanding, my best friends husband was the same way only worse. i am learning that unless you have had had or have cancer you have no clue what its like to have cancer. good drs may be able to emphathize with you but they still dont know. its the same way with people, good, caring understanding people could emphathize but have no idea until they have it. if nothing else, you could try a counselor, i know that means another appt and more running around but it would be a caring,lving being who cares about you at least for an hour. or if you need someone to chat with, the cancer survivor network does have a chat room to live chat with people. i hope you call around, some one, some where has an answer for you. and yes it does suck that with a major illness sometimes we have to do so much extra to be our own advocate. i am not into prayer, but i will certainly send you warm wishes and luck...

    Hi Cinnamon
    I tried everything you suggested. My rad. onc. had me call someone at the cancer center and I ended up in tears. It just isn't worth it. I was going to a counselor, but she can't really help anymore. I don't know how to deal with what I'm feeling right now and since she hasn't had cancer, she can't help.

    I just try to think positive thoughts when the dark ones come and cry when I need to. I don't know what else to do. I vent here, but that gets old after awhile.

    I truly appreciate everyone's ideas. I was hoping there was one that I hadn't tried yet.

    Take care,
    Betsy
  • mom62
    mom62 Member Posts: 604 Member
    #17
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    Try Yourself
    Hi Betsy,

    I know it may be hard but maybe you could start your own group? Maybe hang up a flyer in your church or post office and ask anyone who is interested to call you? You may be surprised how many people in your community are suffering like you are. Maybe you could ask your local church if you could use their facilities for your meetings. Just a thought, no one should be alone. You alwasys have us to vent to. I have had great sucess with my therapist, maybe you need to shop around for another one, not everyone is a good fit. You are in my prayers.

    Terry
  • Curlz
    Curlz Member Posts: 42
    #18
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    mom62 said:

    Try Yourself
    Hi Betsy,

    I know it may be hard but maybe you could start your own group? Maybe hang up a flyer in your church or post office and ask anyone who is interested to call you? You may be surprised how many people in your community are suffering like you are. Maybe you could ask your local church if you could use their facilities for your meetings. Just a thought, no one should be alone. You alwasys have us to vent to. I have had great sucess with my therapist, maybe you need to shop around for another one, not everyone is a good fit. You are in my prayers.

    Terry

    Try the American Cancer Society
    We're all on this board thanks to the ACS, and they have a wonderful program called Reach to Recovery...if there's no office close to where you live, there are still volunteers who will call and talk to you by phone. These are women who have had breast cancer and gone through extensive training to become R to R volunteers, and it's exactly what they do!

    I just went on the purple Find Support and Treatmen tab off www.cancer.org (ACS's home page), followed the links to find locations in your area, and this is the first one that came up (but there were others): Portage (877) 499-4673

    PLEASE call them...the program is FREE, and as a former ACS staff member (can you tell?!?) I can tell you that even with the knowledge I had from working there, I found my Reach volunteer to be a tremendous help!
  • Betsy13
    Betsy13 Member Posts: 185
    #19
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    Betsy13 said:

    Thank you!
    I will contact cancerlifeline.org and pray they have a group in my area. I have never heard of them.

    Thank you, thank you.

    cancerlifeline.org
    Nothing in my area. Thanks for trying!
  • Betsy13
    Betsy13 Member Posts: 185
    #20
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    Curlz said:

    Try the American Cancer Society
    We're all on this board thanks to the ACS, and they have a wonderful program called Reach to Recovery...if there's no office close to where you live, there are still volunteers who will call and talk to you by phone. These are women who have had breast cancer and gone through extensive training to become R to R volunteers, and it's exactly what they do!

    I just went on the purple Find Support and Treatmen tab off www.cancer.org (ACS's home page), followed the links to find locations in your area, and this is the first one that came up (but there were others): Portage (877) 499-4673

    PLEASE call them...the program is FREE, and as a former ACS staff member (can you tell?!?) I can tell you that even with the knowledge I had from working there, I found my Reach volunteer to be a tremendous help!

    American Cancer Society
    I tried them. They assigned a woman to me for Reach and Recovery. She had Stage II cancer and had nothing like I did. We were both frustrated and after 2 phone calls, we gave up. Very disappointing for both of us, I think.
  • Betsy13
    Betsy13 Member Posts: 185
    #21
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    mom62 said:

    Try Yourself
    Hi Betsy,

    I know it may be hard but maybe you could start your own group? Maybe hang up a flyer in your church or post office and ask anyone who is interested to call you? You may be surprised how many people in your community are suffering like you are. Maybe you could ask your local church if you could use their facilities for your meetings. Just a thought, no one should be alone. You alwasys have us to vent to. I have had great sucess with my therapist, maybe you need to shop around for another one, not everyone is a good fit. You are in my prayers.

    Terry

    support group
    I have been trying to start my own support group. I have had no luck. I have tried talking with people, putting up flyers, etc., etc.

    I feel like a broken record. I feel like all I do is whine and complain. I have tried everything that I can think of to either get support or create my own type of support.

    I even called a 'friend' the other day. She told me that she offered to bring food at the very beginning. Well, at the very beginning, the fatigue hasn't kicked in yet. Then when I said I wished she had called back and offered again, she told me that it had been my responsibility to call and ask her to do it because she had offered once...wow, I was flabbergasted. I kinda hemmed and hawwed and said that I just couldn't.

    I don't know. I truly appreciate your ideas and am still willing to try. I also called Susan G. Komen and the woman was so mean who answered the phone that I ended up in tears and told her I was sorry to have bothered her. Again, I don't know. However, I do know that I am still dazed and amazed by people. Their 'kindness' never ceases to amaze me!

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