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dealing with and finding a support group for local recurrent breast cancer

Be Happy Girl
Posts: 3
Joined: Sep 2012

I have been dealing alone with local recurrent breast cancer for 2 years without any group. In my area of Ct. there are no groups for this type of breast cancer and I was asked to leave the survivor group I was in. Devastating to me. I have tried for 2 years to get the local breast centers and The American Cancer Society to start one.But no luck even though there are others in this category. Wondered how others cope and if there is a group I could find locally. Glad to hear about this Discussion board. After almost 4 years cancer free I had 2 more local recurrences and got asked to leave. Trying to stsy positive and happy but so hard without my group that I had for almost 4 years. Not everyone stays a survivor or is stage 4. We need a voice too and a group like the others have. Thanks, Be Happy Girl

MAJW
Posts: 2515
Joined: May 2009

So sorry you were asked to leave....how insensitive can they be? Here's just a thought....would it be possible to start your own group? Perhaps you could make some fliers on the computer and ask your cancer center if you could post it there...And explain why....if you belong to a church, post it there and perhaps they would supply a room that you could use to hold the group meetings...I understand, as I am stage IV but in remission....where do we fit in? Who was this group you were asked to leave ...who are they affiliated with...or was it a grassroots start up? They should be ashamed of themselves!

I must say, this board has been my support group for 3 years...I couldn't get by without the support, caring, advice and encouragement from this amazing group of women....we can say ANYTHING, rant, rave, you name it and someone always comes to our "rescue"...there's women in every stage of this journey...from long term survivors to newly diagnosed....please give "us" a try......and give thought to starting your own group...you're not alone in this fight...

We care....
Hugs, Nancy

Be Happy Girl
Posts: 3
Joined: Sep 2012

Wow. I didn't expect such a wonderful relpy and so quickly. So happy to have this new group.
I am so on overload trying to keep my job and go to dr appts that starting a group would be too much for me. And I don't belong to a Church. When I say I have tried for 2 years I have really tried so hard to contact over 10 organizations for help with this. Now I can count on your group for support for sure. Thank you thank you.

The groups that told me to leave or that I don't qualify to attend were Breast Cancer Centers at hospitals in my area of Fairfield County Ct. as well as 2 private survivor groups.
I do believe that this is a voice that needs to have a group to go to but so happy to have your response. It was through a call to attend an event at the American Cancer Society that I found out about this Discussion Group. That was about 2 1/2 hours ago. She was so distressed about my story that she did everything she could to help. I told her that I was not attending her event due to my bad experience with them and getting a group started. Then of course I really vented and said I tired of hearing about survivors and the pink hoopla if they can't even find one social worker for this area of the county to help with this group when I had secured a room, called all the centers for possible breast cancer women to come(they all had some to send for recurrent breast cancer). Of course the breast centers didn't make it a priority either. So sad.

Again Thank you I don't get to vent very often as you can see! No family in the area and lost 4 friends and a fiancee during this process. But have new friends now that are fun after a year and a half alone all the time, but they know nothing about my cancer or my financial troubles from this disease. The first group ran when they found out what I was dealing with. Again so glad that you all understand.

I may need to switch to another treatment that is not approved yet for Breast cancer. My doctor so far says he can't do it. Will know my result in 12 days or so when I do another ultra sound of breast. Any experience with Compassionate requests from Wyatt Pharm etc ?
Next time this won't be so long. Take care Nancy
BE Happy Girl

Be Happy Girl
Posts: 3
Joined: Sep 2012

Also,great news that you are in remission. That is the best. Be Happy Girl

Bella Luna's picture
Bella Luna
Posts: 1575
Joined: Aug 2009

Nancy has an excellent suggestion. Can you start a support group of your own? There is definitely a need and I am sorry you were turned away because of your recurrence.

You know, when I was in a support group, there was a woman who was such a pillar of grace and strength. When she was done with treatment, she moved onto the next group that dealt with post recovery. I mention her because this beautiful spirit had a recurrence and tried to get back into the newly diagnosed group. She was also asked to leave because the center thought the other women who were battling cancer wouldn't be able to handle seeing someone who is dealing with a recurrence. As you can imagine, it was devastating to hear the news... "Sorry, you can't stay."

At the time, the center didn't have a recurrence/Stage 4 support group. There was an obvious need and the program developed one. Thank goodness, someone heard this woman's cry for help and meet her needs. They created a new program for Survivors dealing with recurrences and Stage 4.

I wish you well with finding the much deserved support you need. Hugs to you.

rallendorfer
Posts: 245
Joined: May 2012

this is going to help you a lot. I also tried to join a group and it was all survivors and they didn't seem to want me when they found out my mouth was burnt up from my 1st chemo. I thought that I was welcome there and I was wrong and it darned near put me under.

HOWEVER, the one lady I met there who was human told me about this board and here I am, with you, and others finding a little warmth in this cold dismal disease.

So glad you found this site too!
Rebecca

camul's picture
camul
Posts: 2122
Joined: Dec 2010

When I was diagnosed stage iv 2 years ago, I saw a counselor through the cancer center. She was very nice but not what I needed. I needed someone who really knew what I was going through, so I checked into a cancer support group. When I told the facilitator that I was stage iv, a look came across her face so I asked her if I would be welcomed and accepted. She was straight with me and said it would be hard for me as well as the people in the support group as my terminal diagnosis was their biggest nightmare. I understood, but felt really alone. Then Gagee from this board who is a very good friend and was in treatment for bc, told me about this site. The people here have been wonderful and understand when you are having a rough time, feeling hopeless and need to vent, without judging or telling me to buck up!
I believe we have all found out who our friends are, and some who I doubted when first diagnosed took time, but some are back in my life. It took time for some of my siblings to be able to talk about it. People get scared, or just don't know what to say, so they avoid us altogether, they may or may not come around, and I don't have the time or energy to worry about it.
You will learn, there are so many amazing women on this site. Smart, funny, young, old, happy, hopeful, encouraging, and a lot of us scared. This disease sucks but it also brings out the best (and sometimes worst) in all of us.
Wish you the best in this unpredictable journey.

rallendorfer
Posts: 245
Joined: May 2012

So wonderfully said. It is a virtual friendship organization, almost like following a soap opera or characters in a book that you have come to love, except you get to interact with these people in a safe environment. No one can see your house is dirty when you type, or that you are bald or in your natty bathrobe. And if you feel bad, unlike being with a "real" group you can just lay out for a couple of days without being stared at like you have 3 heads...of course after going through chemo I wouldn't rule that out!

Rebecca

missrenee's picture
missrenee
Posts: 2137
Joined: Apr 2010

I love this place as well. It's helped me in more ways than I can count. I've come here for advice, to cry, to vent, or just to share my feelings. Everyone here is compassionate, understanding and loving.

When I was just diagnosed (almost 3 years ago), I tried a support group. I found it clickish and unfriendly. One woman (who believed in natural healing) told me the chemo I was taking would kill me faster than the cancer! I left-in tears. I had to stop my husband from going in and giving them a piece of his mind.

But then I found a most wonderful support group--The Wellness Community. They are a nationwide survivors' group for cancer patients and their whole families. They provide classes in yoga, tai chi, cooking healthy, knitting, journaling, etc. and various support groups. I have been attending my 2-hour/week group therapy for over a year. It's wonderful because everyone there "gets it", you can say anything you want, and like Vegas, what happens in group, stays in group. The group is lead by a facilitator who is a licensed therapist. Plus--added bonus--it's all free! Check to see if you have one in your community. I don't think you'll be disappointed.

Best of luck and please stay here with us. We care.

Hugs, Renee

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