Already a member? Sign in
What - Inspire is a place where you can connect with people who share your health concerns and find information and advice in groups sponsored by organizations you know and trust.
Why - As a member you can use Inspire to let friends and family know how you're doing, contact others who share your health concerns, receive personalized updates and information about participating in surveys and clinical trials, and more.
How - Joining Inspire is completely free and usually takes less than a minute. Join now!
I was wondering if anyone attends a regular local support group and if they found it helpful? I signed up to attend an "I can cope" support group through the American Cancer Society but don't know how it will be. Those Weight Watchers support groups never helped me lose a pound, so I might just not be a group person! At the same time - we all should have some type of outlet, right? Thanks!
I have had ovarian stage 3c for two years. I have not
reached remission and am on chemo indefinitely.
I was in denial stage for almost a year before joining
a support group. There are pluses and minuses...
the plus side is that women in the group have prior
experience with certain drugs and can offer information that you may not get through medical/nursing staff. For me the down side was
strong interest in the journey of another survivor
because her journey mirrored mine...she looked very good and participated in a lot of activities with family
and friends and then boom, she died. All within a month. That was incredibly disheartening. Also, when I
was first diagnosed and had surgery, the woman from
the local ovarian support group called me upon recommendation of a mutual friend. After hearing my
story she said I would be lucky to survive 2 years...
it is almost two years now and I feel pretty good and
I am still hopeful that a miracle will happen for me...
her call was a real bummer for me psychologically.
And I have taken emotional hits from my doctors too...
all have said to get my papers in order....so i have
learned to shut out these inocuous remarks and
keep the hope...I think support groups really depend
upon what your personal needs are and how the
particular group can fulfill your needs. This group
I was in had women who had really bonded to the
point where I felt like an outsider looking to join
a sorority.
ohmama, I'm a people person and I love my support group! It is so important to know you aren't alone in this fight and to actually "lay eyes" on other survivors. You can go to the meeting knowing folks will understand if you're bald, can't eat, look like hell that day, or whatever. We exchange tips about how to handle side effects of treatment, have speakers from time to time, and send cards or flowers when someone needs a lift. (I like funny cards myself.)
At our meeting last month, we all brought something to share that brings us joy. It was so fun and uplifting! And, one lady brought some sheets of bubble wrap with the big bubbles and at the end, we all took off our shoes and walked on the bubble wrap. Some folks had the enthusiasm of young girls. It was great to see!
My group is one for all gyn cancers and actually has awareness tables with literature that we give to women and talk with them one to one on about gyn cancers. (I even flag down men and give them a wallet-sized card with signs and symptoms of ovarian cancer to take to a woman in their lives!)
We've done some fund-raising, too, so we can help women out in small ways...with a bill or gasoline because they have to travel so far to the doctor. Our group helped get an ovarian cancer car tag (the first one in the U.S.!).
This past November we put together little gift bags for ladies undergoing chemo -- included things like lip balm, hand sanitizer, etc., and a personal handwritten note of encouragement. Many of the ladies who participated were undergoing treatment themselves. They knew if they got tired, they could rest.
And we know our group is a fluid one. There may be times when folks don't feel good and can't participate in person. That's OK. We still keep in touch.
I would love to start a support group, because, it would give cancer survivors a place to vent and we could exchange ideas. We could talk about the doctors, chemo, vitamins, essiac and family support. We could support each other.
I am in Chicago, IL. Would anyone be interested?
I am very disappointed with the so called ovarian cancer support group at MD Anderson. The first one attended the two women in charge told me this is not really a support group; instead they have different speakers once a month. There are hardly anyone that attends and nobody is really friendly. The two women in charge do not have very good social skills and not very informed about ovarian cancer. I was 37 years old when diagnosed with stage 4 ovarian cancer. I don't have anybody around me who can relate to what I am going through. Through cancare they hooked me up with supposedly the same thing I am going through. Instead it was a much older person who has been in remission for many years and is not very warm and caring. I feel like I am burdening my husband and family even though they are very supportive. I have a six year old and I am very afraid of dying and leaving her. Is there anyone in the Houston area who is going through the same ordeal. Thanks for letting me vent.
I would definately look and see if there is a ov cancer support group in your area. You definately need to try them out b/c the people attending make all the difference. I hate to miss my monthly meeting, since we are all going through the same type it is nice to hear others experiences on chemo and side effects. We also have monthly speakers who talk about diet, side effects, etc. which is helpful. It is also a great way to find out about new research and ca information. The one I go to is sponsored through the hospital.
I belong to OVCA support sponsored by the wellness Community. Even though it is a 50 minute drive to reach I joined 2 months ago and very glad I did. Check to see if there is a Wellness Community near you.
Actually, there were no support groups near me. I live up in the boonies of upstate New York so I started my own. I went to a cancer seminar and while there, sent around a sheet of paper asking people if they were interested in starting a support group. 9-10 signed up and I made a flyer, sent it out, put it in the church bulletin, local newspaper and hung them all over town. The first meeting I had 5 people, last month I had 3 and hopefully this month I hope to have 7. I arrange for a guest speaker each month. If you need any help, email me at nora_lachance@yahoo.com. Good luck
We have a very small group in my area that meets once a month. We are all OVCA warriors and are working on getting the word out to this area. I (like you Fireball) have not been able to go to the breakfast meetings due to family and carting kids around but we also communicate and keep up on each other via email. We are starting to grow (3 new added this past month) and it's nice to know that we are doing something to get the word out to women in our area.
Is there a cancer center close to you that may help you to connect with others?
Melissa
Hi All,
I have belonged to an Ovarian /Gynecologic Support Group here in Melbourne, FL since I tossed my wig aside and dipped my to in the water in 2003.
The friendships I have made with my fellow survivors are like no others. Our status as SURVIVORS is the bond from which we approach our new lives. We motivate each other and keep our spirits up.
Life with this cancer is not always rosey and we have lost many friends - wonderful cherished women to this terrible disease. Each loss is unacceptable. We mourn and then resolve again to make a difference in their honor.
I could go on...but if you would like to see what a few determined Survivors in a Support group were able to build and how it evolved, please take a look at our website. www.tealriboncfl.com
I wish it was possible for more communities to have a Support Group program for Gynecologic Cancer Survivors. Maybe it is possible to start one in yours.
Take care, all of you,
Connie
You might want to check the Wellness Community
(http://www.thewellnesscommunity.org/) . Mine in central NJ has a gynecological networking group that meets once a month.
There is also a gynecological support group at the cancer center I go to. If you have social workers where you are treated they might help you find a group.
I also belong to the ovarian group on ACOR
at acor.org which is similar to this group. Share has meetings for OC survivors but they are in NYC.
Good luck
Dee
I'm sorry there is an error on the website for my ovca group that I sent to you.
Here is the correction: caringtogetherny.org
I hope you can find one that will help you,because I did........Linda
Ladies,
I feel blessed to have an all ovca support group where at least 2-3 dozen women attend monthly at our local hospital for some very upbeat discussions and we all support new comers and visit them at the bedside in the hospital.
We have a yearly weekend retreat, have a team for Relay for Life, bring in speakers, hold fundraisers etc etc.
It's an hours drive for me but so worth it. Although it takes time from my family to attend, they benefit from the sense of impowerment these women give me.
I like having both an online and actual group for support as both a breast and ovca survivor. There are over 80 women all total in the group, which has been active for 10 years. We do have a monthly newsletter and if anyone is interested, let me know and I'll add you to our mailing list.
Blessings,
Sue
I might be going out on a limb here, but I think in some ways we (as in me) older woman tend to see a more limited set of people, now that our kids are grown...so a support group might be especially beneficial. For those who are younger and balancing all of the demands of family, sometimes outside employment, and the disease, I can see where an in-the-flesh support group might just become one more item on a time constrained to-do list...and therefore, not as satisfying.
There are a few great support groups online; one on Yahoo:
http://groups.yahoo.com/group/ovarian_cancer/
Here is one on FACEBOOK:
http://www.facebook.com/home.php#/group.php?gid=2209779963
This one is a small group and if you love to laugh, these are guaranteed to:
http://www.facebook.com/group.php?gid=45051137122
They look on the bright side. Anyone feel free to check out my blog. I am a 6+ year survivor and will keep on going no matter what; a word of warning; My blog is listed as Adult Only for a reason; I hold nothing back and refuse to. If you don't have a sense a humor that blog may not be for you but it is the truth coming from a Stage IIIc Ovarian Cancer survivor who has been told that death is near so many times; I just refuse to believe it:
http://shoppingkharma.blogspot.com
My mother joined a support group and it has helped her tremendously. I try to go with her at least once per month. Even though its not just OVCA survivors, many of the feelings and emotions are the same. She's made a couple of close friends through the group. If there's a group close to you, I would suggest giving it a try. You don't have to participate in the group or tell your story if you don't feel comfortable (my mother was very emotional her first visit). IF it's not for you, then don't go anymore. But you might be surprised.
This is my support group. I don't have time for an actual one. My family comes first. That doesn't leave me much time to go anywhere. I'm not complaining. As a bonus. I get to meet special people from all over the world.
I just recently joined a support group, just for ovca surviors. If you can't make a meeting, they are a phone or e-mail away.They have been so benefical helping me in a positive way. We are all sisters in this dreaded disease and know it will be a part of our lives forever. They do know and understand what you are going through. I found from experience ovca surviors are your best support..............,because they do get it! I can't tell you enough about this group. I know they would help you in anyway they can. Here is their web site: www.caringtogethemy.org.
Good Luck to you and hope this helps.
I would love to join an OC group but I live too far away from any. I feel very isolated.
Jeanie
I didn't go to a support group until after my front line therapy was completed. I just wasn't ready...and the groups I knew of were quite a long drive. Afterwards, I decided to look again for a local group, because I wanted to offer to just be an empathetic listener to any woman with OvCa who might need someone. I found that one of our local hospitals had a group for breast and gyn survivors (and caregivers are welcome). The social worker who runs the group told me that there wasn't enough continuity for a gyn group to be on its own :-( There are about 20+ women in our group. We meet monthly. After a few meetings I felt very comfortable opening up as part of the group. I have learned quite a bit from the group members - regardless of the type of cancer we each have. While I don't feel that I "need" the support group, I do find that I look forward to participating, whenever I can.
And, of course, this website has been a wonderful place to meet and exchange ideas and information.
I belong to a very small local support group for all cancer survivors. We have already lost two members, one to stage 4 breast cancer, and one to stage 4 ovca. We have one man who is battling prostate cancer. I have found it valuable in a limited sense. We are all very caring of one another. OTOH, I am the only one with ovca, so I don't get the "I know what you are going through" that I get here.
Zircons, that would be great if you started one. The woman who started ours is a young mom who survived colon cancer. She wanted a group so badly she stepped out of her comfort zone and started one herself.
Whether online or IRL, I think it is invaluable to have others to talk to who really, truly "get it."
Add to the discussion