Support Groups

osmotar
osmotar Member Posts: 1,006
in Head and Neck Cancer #1
Have any of you attended or are attending a support group for head and neck cancer?

Comments

  • jim and i
    jim and i Member Posts: 1,788 Member
    #2
    NO
    The only one is available is 40 miles away and Jim is not thrilled with attending anyway. I probably could have gotten him to go once if it was close.
  • Hondo
    Hondo Member Posts: 6,636 Member
    #3
    jim and i said:

    NO
    The only one is available is 40 miles away and Jim is not thrilled with attending anyway. I probably could have gotten him to go once if it was close.

    Support Groups

    I don’t know of any in my area for head and neck cancer only. There are a lot of other cancer support groups here in Lafayette but I have never been to any of them.

    Hondo
  • sweetblood22
    sweetblood22 Member Posts: 3,228
    #4
    Hondo said:

    Support Groups

    I don’t know of any in my area for head and neck cancer only. There are a lot of other cancer support groups here in Lafayette but I have never been to any of them.

    Hondo

    If I could find one soley
    If I could find one soley for HNC anywhere near me, I would go. There are none even remotely close, unfortunately. I tried a general one, last year in May, but I was going because I was so depressed about not eating, and when I got there, they had snacks on the table. Cake, pretzels and soda. It was not good. At the time I was still peg dependent.

    If you want to try find a group near you. You can check with SPOHNC, I believe I have a link for them on the superthread. At the top section, I think.
  • mixleader
    mixleader Member Posts: 267 Member
    #5
    Support
    I don't know of any specific support groups near me, but I attend Gilda's Club meetings for cancer victims and caregivers with my wife at my side. I find these visits to be valuable to help me with the psychological aspect of all of this.

    Roger
  • osmotar
    osmotar Member Posts: 1,006
    #6
    mixleader said:

    Support
    I don't know of any specific support groups near me, but I attend Gilda's Club meetings for cancer victims and caregivers with my wife at my side. I find these visits to be valuable to help me with the psychological aspect of all of this.

    Roger

    Groups
    I have found one that is close to my home, they meet 3rd Wed of every month for 2 hours and it is specific to head and neck. My neice who is here wants to go with me. I was wondering what type of meeting discussions were held or if there is just an open forum chat.
  • sweetblood22
    sweetblood22 Member Posts: 3,228
    #7
    osmotar said:

    Groups
    I have found one that is close to my home, they meet 3rd Wed of every month for 2 hours and it is specific to head and neck. My neice who is here wants to go with me. I was wondering what type of meeting discussions were held or if there is just an open forum chat.

    I'm sure it depend on who is
    I'm sure it depend on who is running the meeting. The one I tried, usually had a guest speaker. (a fellow survivor telling their story. Or a talk on a topic related to cancer) Then there was some general chit chat and each person talked about themselves a bit or just introduced themselves.

    Rick, aka ratface/splinter I believe goes to SPOHNC meetings. He may have imput for you.
  • Pam M
    Pam M Member Posts: 2,196
    #8
    Not For H&N Specifically
    But on Wednesdays, I attend a support group meeting at a local Wellness Community (affiliated with Gilda's Club). The Center also sponsors various activities and speakers.
  • D Lewis
    D Lewis Member Posts: 1,581 Member
    #9
    This is my support group...
    No H/N support groups in my neck of the woods. I believe there is a general cancer wellness group locally, but it meets during the day, and I'm back at work now.

    Deb
  • Irishgypsie
    Irishgypsie Member Posts: 333
    #10
    D Lewis said:

    This is my support group...
    No H/N support groups in my neck of the woods. I believe there is a general cancer wellness group locally, but it meets during the day, and I'm back at work now.

    Deb

    Yes, but weren't too helpful!
    Yes, I initially attended a support group for head and neck and for young adults neither were helpful for my fears and derpession. The head and neck group was difficult because everyone there except me was over 50, so it just made me mad. Also, they always have geust speakers that talk about side effects, treatment etc. That stuff would've been nice to know before treatmment. I felt like people at the support groups didn't want to have a open forum to talk about fears of death, deppression, and how the have coped, etc. The young adult group was the same most didn't want to openly talk about stuff. I'm a registered nurse so to me if your not willing to open up and talk about the real issues then why have a support group. Now I just go see a counselor!!! :(
  • ratface
    ratface Member Posts: 1,337 Member
    #11
    D Lewis said:

    This is my support group...
    No H/N support groups in my neck of the woods. I believe there is a general cancer wellness group locally, but it meets during the day, and I'm back at work now.

    Deb

    I attend regularly
    I attend a SPHONC sponsored support group once a month which actually starts up again next Wednesday. We take the summer months off. You can find the times and locations by googling SPHONC. It's near my home and facilitated by a hospital social worker. Alternatively large hospitals that specialize in head and Neck cancer have their own. In the Chicago area the University of Chicago has it's own group. I attend at the cardinal Bernadine center at Loyola university. It's very convenient for me and only 15 minuets away.

    It's a social opportunity once a month and I think it's worthwhile. We have guest speakers from the hospital or nearby support industries, i.e. lymphedema therapy, hyperbaric therapy. The facilitator illicits ideas from us for speakers. Some days we get only a couple of members and some days we get from 4-8 attending. It's always a small group. Almost always we will get a new person with all the expected fears and that's why I go. Sometimes you get and sometimes you give back. The group was there for me in the beginning and continues to be there if things go wrong. We also share many of the same challenges and it's good to share solutions. I highly recommend it but be aware that it's not for everyone or the faint of heart. Folks do get sicker and sometimes succumb to the disease and you will find yourself emotionally engulfed. See what's available in your area and attend one meeting.
  • osmotar
    osmotar Member Posts: 1,006
    #12
    Irishgypsie said:

    Yes, but weren't too helpful!
    Yes, I initially attended a support group for head and neck and for young adults neither were helpful for my fears and derpession. The head and neck group was difficult because everyone there except me was over 50, so it just made me mad. Also, they always have geust speakers that talk about side effects, treatment etc. That stuff would've been nice to know before treatmment. I felt like people at the support groups didn't want to have a open forum to talk about fears of death, deppression, and how the have coped, etc. The young adult group was the same most didn't want to openly talk about stuff. I'm a registered nurse so to me if your not willing to open up and talk about the real issues then why have a support group. Now I just go see a counselor!!! :(

    Thanks
    Irishgypsie, thanks for the info. I am going to have my second chemo infusion next monday, I've made it thru the chemo with out too many issues. I'm more interested in talking to folks who have gone thru the radiation, which for me will start sometime in Novemeber. Possibly finding someone who may even gone thru this with the same doctors I am dealing with.

    Linda
  • osmotar
    osmotar Member Posts: 1,006
    #13
    ratface said:

    I attend regularly
    I attend a SPHONC sponsored support group once a month which actually starts up again next Wednesday. We take the summer months off. You can find the times and locations by googling SPHONC. It's near my home and facilitated by a hospital social worker. Alternatively large hospitals that specialize in head and Neck cancer have their own. In the Chicago area the University of Chicago has it's own group. I attend at the cardinal Bernadine center at Loyola university. It's very convenient for me and only 15 minuets away.

    It's a social opportunity once a month and I think it's worthwhile. We have guest speakers from the hospital or nearby support industries, i.e. lymphedema therapy, hyperbaric therapy. The facilitator illicits ideas from us for speakers. Some days we get only a couple of members and some days we get from 4-8 attending. It's always a small group. Almost always we will get a new person with all the expected fears and that's why I go. Sometimes you get and sometimes you give back. The group was there for me in the beginning and continues to be there if things go wrong. We also share many of the same challenges and it's good to share solutions. I highly recommend it but be aware that it's not for everyone or the faint of heart. Folks do get sicker and sometimes succumb to the disease and you will find yourself emotionally engulfed. See what's available in your area and attend one meeting.

    thank you for the response.

    thank you for the response.
  • Goalie
    Goalie Member Posts: 184
    #14
    osmotar said:

    thank you for the response.

    thank you for the response.

    Georgetown
    Here in the Washington DC area Georgetown Univ hospital, where I went, has enough of a trade in H&N - alas - that they have a group just for these. It was never convenient for me as we did rads first thing every day and this was in the afternoon. By then we were home and not wanting at all to go back. Early on I think I didn't want to know about it and by the time it would have been useful, I was too sick to want to go. Now, though, I wish I had; just another lesson I hope never to use. Doug
  • Hondo
    Hondo Member Posts: 6,636 Member
    #15
    D Lewis said:

    This is my support group...
    No H/N support groups in my neck of the woods. I believe there is a general cancer wellness group locally, but it meets during the day, and I'm back at work now.

    Deb

    Hi Deb
    I am with you, this is my support group right here and had been so for the passed 3 years


    Best group I have ever been with
    Hondo
  • SASH
    SASH Member Posts: 421 Member
    #16
    Support Group
    I helped run a SPOHNC support group for a few years until I got my new job that doesn't afford me the time to go back. I found it very helpful not only for the information I was able to pass on, but what others brought to the table. The other person that ran the group was a Head and Neck nurse so had a vast knowledge of the anatomy and what changes happen with both surgery and radiation side effects.

    I did talk to the facilitator of another group for H&N support but never went to that group because she seemed to have an attitude. She made it out that her group was better because she ran the group and she was a licensed social worker.
  • palmyrafan
    palmyrafan Member Posts: 396
    #17
    Support Group
    There are no head and neck support groups around me that I am aware of. As I can't drive and my husband's schedule is pretty tight, I find this site to be of more support and comfort than I would probably get in a physical support forum.

    There is a brain tumor support group about 15 minutes away, but again, with my husband's schedule, time just doesn't permit it.
  • Pam M
    Pam M Member Posts: 2,196
    #18
    Irishgypsie said:

    Yes, but weren't too helpful!
    Yes, I initially attended a support group for head and neck and for young adults neither were helpful for my fears and derpession. The head and neck group was difficult because everyone there except me was over 50, so it just made me mad. Also, they always have geust speakers that talk about side effects, treatment etc. That stuff would've been nice to know before treatmment. I felt like people at the support groups didn't want to have a open forum to talk about fears of death, deppression, and how the have coped, etc. The young adult group was the same most didn't want to openly talk about stuff. I'm a registered nurse so to me if your not willing to open up and talk about the real issues then why have a support group. Now I just go see a counselor!!! :(

    Too Bad It Wasn't Helpful
    My group is older (at 46, I'm the next to youngest), but it's good - depending on the day (and the need) we cover life, death, treatment, recovery, depression, fears, joys, jokes, sex, and any other topics that pop up. Granted, some days I feel like maybe I should consider leaving the group, but more often, I think the meeting was a good use of my time.
  • Pam M
    Pam M Member Posts: 2,196
    #19
    D Lewis said:

    This is my support group...
    No H/N support groups in my neck of the woods. I believe there is a general cancer wellness group locally, but it meets during the day, and I'm back at work now.

    Deb

    Hitting the "Like" Button, Deb
    THIS is the support group that got me through treatment.
  • fisrpotpe
    fisrpotpe Member Posts: 1,349 Member
    #20
    yes
    They started a local one about 45 months ago. It is very good. The hard part is to get the local doctors to suggest it to those fighting to attend. We meet twice a month once on the Cancer Center grounds and the other off site. One is durning the day and the other is evening.

    John

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