Survivor Support Group in Richmond (Henrico) Virginia

Dafne
Dafne Member Posts: 6
edited October 2015 in Head and Neck Cancer #1

I am the wife of a very recent (May) head and neck cancer survivor. What I learned very quickly was that my husband had a lot of post-treatment-cancer questions that I could not answer. In short, I understand that I can't understand.

Of course, I investigated cancer survivor support groups here in our hometown, Richmond, Virginia, in the county of Henrico.  I learned there are a number of cancer-survivor support groups, but what I also learned was that the majority are "cancer-specific" (okay, that makes sense) or those that accept "any kind of cancer" all meet during the day. Since, as a survivor, my husband has returned to work, he needs a group that meets in the evening or on the weekend, and hence this query:

Does anyone know of a cancer-survivor support group in Richmond (Henrico) that meets in the evening? Until he can find him someone or two or more someones to talk to, his questions are on hold. 

By the way, I found a number of discussions on this head and neck site interesting and germain, but my husband is not an Internet person, and would most benefit from a face(s)-to-face(s) exchange. 

Thank you, 

Dafne

 

 

Comments

  • Barbaraek
    Barbaraek Member Posts: 626
    Survivors

    Daphne,

    Does the doctor who treated your husband have any former patients who would be willing to talk with your husband? My husband's radiation doc has treated about 6-8 people with his type of vancer over the last few years and he gave us a name of someone who would be willing to talk with my husband 1 on 1.

    Also there is the national group SPOHNC, but I don't know if there is chapter in your area. Best of luck.

     

    Barbara

  • MarineE5
    MarineE5 Member Posts: 1,029 Member
    Questions

    Dafne,

    Two quick suggestions, first, post your husband's questions here on this discussion board as there is usually someone here each day that can more than likely answer his question.

    Secondly, in the evening, there are a few of us H & N survivors that use the Chat room on this site as well and you can get real time answers there. The Chat room gets a bit active around 9 PM generally, but others visit off and on during the day and night. It is a mix of Caregivers, Patients and Survivors in there, so you don't know exactly who may be there when you show up.

    Again, as I mentioned, post your questions here, someone will reply, they may have walked a similar path and has the knowledge to help your husband.

    My Best to Both of You and Everyone Here

  • wmc
    wmc Member Posts: 1,804
    Welcome to the H&N Group..........

    Welcome to the H&N group, and sorry you need to be here. This just might be the best place for answere for now. At the top of the group forum you will see a Superthread (Read only) which has many answere as well as sugestions on haw to adjust and care for himself, here is the link: http://csn.cancer.org/node/261072

    I'm in California and the only ones I know only meet in the daytime and during the week so many can't ever go. You could alwasy ask his questions and someone is here most of the time as some are East Coast and West Coast and several in the UK so we cover a large time zone. As for me I just pop in on and off all day and night as I spend much of my time on a site for Laryngectomee, as they removed my vocal cords with my cancer so I have to spend lots of time thete as I an Admin for their two sites, Web and Facebook as well. 

    You never said where his cancer was, as head & neck does cover a lot. Mine was stage 3 SCC in the superglottic [just above vocal cords] I never had to have chemo or radiation which most on here have had. They removed 86 lymph glands as precaution and my larynx. I was cut from ear to ear, but they got it all and tomorrow is my two year mark. Let us know if we can help. Remember you are not alone in this anymore.

    Bill

  • Dafne
    Dafne Member Posts: 6
    Barbaraek said:

    Survivors

    Daphne,

    Does the doctor who treated your husband have any former patients who would be willing to talk with your husband? My husband's radiation doc has treated about 6-8 people with his type of vancer over the last few years and he gave us a name of someone who would be willing to talk with my husband 1 on 1.

    Also there is the national group SPOHNC, but I don't know if there is chapter in your area. Best of luck.

     

    Barbara

    Thank you . . .

    Thank you, Barbara, that is such a good idea. I will write his doctors immediately and ask. 

     

     

  • Dafne
    Dafne Member Posts: 6
    MarineE5 said:

    Questions

    Dafne,

    Two quick suggestions, first, post your husband's questions here on this discussion board as there is usually someone here each day that can more than likely answer his question.

    Secondly, in the evening, there are a few of us H & N survivors that use the Chat room on this site as well and you can get real time answers there. The Chat room gets a bit active around 9 PM generally, but others visit off and on during the day and night. It is a mix of Caregivers, Patients and Survivors in there, so you don't know exactly who may be there when you show up.

    Again, as I mentioned, post your questions here, someone will reply, they may have walked a similar path and has the knowledge to help your husband.

    My Best to Both of You and Everyone Here

    Thank you, too

    Thank you, MarineE5. I wish I could persuade my husband (Howard is my darling's name) to take to the Internet for things like that, but he is "not into it." He is such a people person and, as I mentioned, would benefit the most from a personal exhange. 

    I am so glad you answered. 

    Dafne

     

     

  • Dafne
    Dafne Member Posts: 6
    wmc said:

    Welcome to the H&N Group..........

    Welcome to the H&N group, and sorry you need to be here. This just might be the best place for answere for now. At the top of the group forum you will see a Superthread (Read only) which has many answere as well as sugestions on haw to adjust and care for himself, here is the link: http://csn.cancer.org/node/261072

    I'm in California and the only ones I know only meet in the daytime and during the week so many can't ever go. You could alwasy ask his questions and someone is here most of the time as some are East Coast and West Coast and several in the UK so we cover a large time zone. As for me I just pop in on and off all day and night as I spend much of my time on a site for Laryngectomee, as they removed my vocal cords with my cancer so I have to spend lots of time thete as I an Admin for their two sites, Web and Facebook as well. 

    You never said where his cancer was, as head & neck does cover a lot. Mine was stage 3 SCC in the superglottic [just above vocal cords] I never had to have chemo or radiation which most on here have had. They removed 86 lymph glands as precaution and my larynx. I was cut from ear to ear, but they got it all and tomorrow is my two year mark. Let us know if we can help. Remember you are not alone in this anymore.

    Bill

    Another thank you

    Gosh, Bill, what an ordeal, but many, many congrats on getting through it!

    BTW, I hope you don't think that your treatment was any less traumatizing than those who have had radiation and chemo. My husband had many treatments of both, but I am absolutely sure he did not suffer less than you did.

    To answer your question. His cancer was on two glands on his neck and one little itsy, bitzy "thingy" (I don't know how to describe it) way back on his tongue. As an aside, did you know that there are no nerves on the back of the tongue so that when he had his biopsy to check it out, he was prescribed a pain medicine but, incredibly, never needed to take it! 

    In any case, those three cancers were caught very early (and were described in the biopsy report as "mild") and he was given a very high survival percentage. But "early detection," high percentage" did not diminish the h*ll of his treatments, the side-effects, and the aftermath. That is why he would find it so beneficial to talk about it, with someone, and again, in person.

    Thank you for reminding us that we are not alone.

    Dafne

     

     

     

     

     

     

  • amr2662
    amr2662 Member Posts: 45 Member
    myCancerConnection

    I was a patient at MD Anderson Cancer Center in Houston.  They had a telephone support program for patients and caregivers.  I think it had a different name in the past but I found the following information on their website.

    myCancerConnection

    Finding out you have cancer can be a very lonely experience. But you're not alone. myCancerConnection volunteers are here so that you don't have to make the cancer journey by yourself. 

    myCancerConnection's one-on-one support connects cancer patients and their caregivers with others who have been there. Requests are matched by disease, mode of treatment, and experience. Support is open to patients,caregivers and cancer survivors who were treated anywhere, and we've made connections around the globe.

    Please call 713-792-2553 or 800-345-6324 for more information.

  • phrannie51
    phrannie51 Member Posts: 4,716
    Asking former patients to help

    newer patients is a great way of forming a group.  When I was diagnosed in 2012, I found a girl in this forum who was from my town....she called me, she also hooked me up with two other people who were treated here....I talked to both of them, also.  From there it has spiriled in this town.  We now have a Head and Neck survivor group who meets monthly....if it happened here in Podunk, Montana....I'm sure it can happen it a bigger area.

    p

  • Dafne
    Dafne Member Posts: 6
    amr2662 said:

    myCancerConnection

    I was a patient at MD Anderson Cancer Center in Houston.  They had a telephone support program for patients and caregivers.  I think it had a different name in the past but I found the following information on their website.

    myCancerConnection

    Finding out you have cancer can be a very lonely experience. But you're not alone. myCancerConnection volunteers are here so that you don't have to make the cancer journey by yourself. 

    myCancerConnection's one-on-one support connects cancer patients and their caregivers with others who have been there. Requests are matched by disease, mode of treatment, and experience. Support is open to patients,caregivers and cancer survivors who were treated anywhere, and we've made connections around the globe.

    Please call 713-792-2553 or 800-345-6324 for more information.

    I will get to it on Monday

    Thank you, amr2662.

    Today is Saturday, and I will start calling first thing Monday morning. It is wonderful how many places may be helpful once you start asking. CSN is my go-to place from now on.

    I'll let you know what they say -- for your future reference when you recommend them.

    Dafne

     

     

  • Dafne
    Dafne Member Posts: 6

    Asking former patients to help

    newer patients is a great way of forming a group.  When I was diagnosed in 2012, I found a girl in this forum who was from my town....she called me, she also hooked me up with two other people who were treated here....I talked to both of them, also.  From there it has spiriled in this town.  We now have a Head and Neck survivor group who meets monthly....if it happened here in Podunk, Montana....I'm sure it can happen it a bigger area.

    p

    Yes . . .

    Thank you, phrannie51. 

    Now I know where to start asking, and why I am here for my husband. All of the replies have not only been wonderfully caring but chock-a-block full of good ideas, as yours is. 

    Your response is very helpful. 

    Dafne