still can't find a support group

Ritzy

Betsy13 said:

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.

You might give the American
You might give the American Cancer Society another chance. Perhaps if you explain to whomever answers the phone that you want someone that has a similar diagnosis, they can put you in touch with someone else.

I am sorry that this is so hard for you. I pray that it will get better very soon.


Sue

Betsy13

Ritzy said:

You might give the American
You might give the American Cancer Society another chance. Perhaps if you explain to whomever answers the phone that you want someone that has a similar diagnosis, they can put you in touch with someone else.

I am sorry that this is so hard for you. I pray that it will get better very soon.


Sue

Thanks, Sue!
Thanks, Sue! I appreciate it. Once I am back at work, there is no extra time to do anything except work, sleep, get up and do it again the next day. I'm a teacher so I'm on Christmas break right now. I'll call them again later this afternoon.

Merry Christmas and Happy New Year!
Betsy

joannstar

Betsy13 said:

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!

did you try your church/temple group?
I was very public about my diagnosis (my husband is the temple president--so everyone knows me) in temple (I'm Jewish). I was amazed at how many women came up to me to tell me of their experiences. It was very helpful to me as they could understand what I was going through. I found that this support kept me from needing to find a "cancer" group.
Perhaps it will be a solution for you also.
Hugs,
JoAnn

Curlz

Betsy13 said:

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!

Definitely try again!
The other thing you might do is call the ACS' general 800#; the people who answer that line are doing nothing but talking to patients and their family members. I'm betting that if you explain to someone there that you were mismatched w/your original Reach volunteer that they'll work to find someone whose experience and Dx aligns more with yours. If nothing else, they can look outside of your area--phone calls and emails don't have geographic boundaries!

As for your 'friend,' I'll share an experience that I had this year with one of my closest female friends...she was going through a lot of sh*t in her own life, and although I'm usually the person everyone turns to for support, I reached a point where I literally didn't have it in me to deal with her any more. When we did speak or email, she always asked how I was, I'd say that I was okay but ridiculously tired, and then she'd launch in to her own drama updates. Little by little, I stopped communicating much, which is VERY rare for me. Once I was finally over the hump of radiation and starting to feel like myself again, we really talked about it. She thought I was pushing her away and didn't WANT her support, and decided that I didn't want her friendship (HER issue, obviously). I just kept saying "You're not listening to me...the ONLY person I gave any energy to was ME. I barely had enough to do that, and that's how I went to work and treatment every day. But that was all I had. I had nothing left for anyone else." Once she really heard me, she realized that SHE should have pushed more and should have realized that for once, I actually NEEDED others to be there for me. Sometimes those of us who are generally strong are afraid to admit that, most especially if we're functioning on the surface.

This is my long-winded piece of advice: be open to help, be willing to ask for it, and if you're sure you're being clear about it and you're still not getting what you need, move on to find people who DO get it. Even if they're on this board vs. physically in your life! There are call-in support groups too. Make YOU your priority as much as possible right now!

mom62

Betsy13 said:

Thanks, Sue!
Thanks, Sue! I appreciate it. Once I am back at work, there is no extra time to do anything except work, sleep, get up and do it again the next day. I'm a teacher so I'm on Christmas break right now. I'll call them again later this afternoon.

Merry Christmas and Happy New Year!
Betsy

suffering
Betsy, so sorry you are having a hard time. I am lucky I have friends and family. I did lose some friends between my first and second diagnosis. What I realized was that it wasn't me it was them, a true friend never leaves you. It took a while but I've let it go. It will take time. Start with small goals. The fatigue and heartache will dissipate over time. Get up every day and remember you are worth it. Take it one day at a time. Get a message or pedicure to make you feel better. My goal is to make it to my sons high school graduation in june. I'm stage vi with bone mets. You have a long life ahead of you be strong and you will get through it. Love and prayers and positive thoughts sending your way!