Phone support people NEVER call...
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I didn't want to point out, or single one group so I'm trying to be nice here. But they say no one should have to go through a bc DX alone. I'm two yrs out now but I have tried SEVERAL times to be hooked up with someone that had a simular DX as mine. Every time I called one of these places that promises that...they NEVER had anyone that was Stage III, Her2, positive nodes, or even remotely close to it? They would ALWAYS tell me they will put me through their system and they WILL find someone. I always waited and ended up with little to no support. (Thank GOODNESS for these boards or I would of had NO support at all.) But many times I just wanted to TALK to someone that understood. (A real human voice.)
One group gave me someone when I was in my 3rd month of chemo. That person was was NOT her2, nor stage III but I was happy to talk to her anyway. But she told me to call her any time. I tried maybe twice and she was always busy and said she would call back. Never did. So I just gave up. I called another major place that does that phone support. They had some women call here and pretty much yell at me like I should be happy I'm alive. She said "You don't have cancer today RIGHT...so quit worrying about it". She was really nasty. So I decided NOT to use that place again. I was crying when she was done yelling at me.
So recently I was feeling down since I lost my Mother to cancer in August...then my own concerns and just wanted to talk to someone. So I gave this other place a chance again. I was told once more they DIDN'T have anyone my stage, or her2 but would see what they could find and get back to me. That was TWO months ago.
So finally now a women calls me back yesterday out of the blue and says she wanted to check in on me. She was the same gal they gave me when first DX that never had time for me. So she asked how I was doing and we talked maybe 4 minutes when she put me on hold and came back to tell me how sorry she was but had to take a call and would call me back next week or some where after to see how I"m doing. (Gee thanks...don't bother.) I've done this all alone till now...I'm tired of them making me think there is someone out there to talk when you need too. Why do ALL these cancer foundations that offer all the peer counseling and such never have anyone for us to talk to? Then when I do get someone they never have any time. I've went through my entire nightmare alone with the exception of this board and the Her2 support board. I wish they wouldn't make promises they can't keep. Its very hurtful for those of us that have no family members or friends to talk to about out so called journey. I suppose I'm just venting so you can ignore this. But I just couldn't believe how I was dumped again yesterday...why did she even bother to call me.
Has ANYONE here had good luck with ANY of these groups that offer the phone support where they MATCH you up with someone that is roughly the same age and DX's? Just curious.Chelee
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Do you live near a major hospital? All three of the large hospitals in my area have breast cancer support groups. I haven't attended, so don't know if they are arranged by specific dx, but that might be a place to start. I'm sure the social worker at the hospital where you had your original surgery would be able to get this information for you.
Another suggestion...are you part of other organizations? I have received a lot of support from the community recreation center where I exercise. The classes I take are almost entirely female (Jazzercise, aqua aerobics and yoga). Once I told a few people I had been diagnosed with breast cancer, I had several people I never knew had been treated come to me to share their stories and offer support. There are a lot of survivors out there and you meet them in unexpected places. I start chemo on Monday and the Jazzercise instructor brought me a big back of books this morning to read while I'm getting treatment. She and I have exchanged opinions on books in the past and she knows I'd rather spend the time reading.
I'm sure you will find someone but you may have to look in some other places. In the meantime, feel free to vent away on these boards.
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Chelee: I felt alot of frustration you have experienced. The support groups have not helped me and the breast cancer centers have now become so sophisticated, I got lost in what was available to me and what wasnt. So! I went to my onc and said I wanted to volunteer. Try and help others with bc get through their chemo. Its the best thing I have ever done. I meet people from the fears of starting chemo to celebrating the end of treatment.
Im sensing a fear that maybe there are not many stage 3, her2 patients. You will meet them at the oncs office. They go there for their Herceptin.
Since I couldnt get the help I thought I needed, I made a difference and it made me feel good.
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