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any support groups out there?

Marshkl
Posts: 3
Joined: Mar 2004

I had osteosarcoma 7 years ago and am having a hard time dealing with the physical limitations. Anyone know any online support groups?

char1970's picture
char1970
Posts: 18
Joined: Apr 2004

hi there... i'm sorry to hear you're having a hard time dealing with things. i've been in your shoes and can say it wasn't until i connected with fellow bone cancer survivors that i felt understood and truly cared about. it took me 9 yrs to find this but now that i have, my life is so much more fullfilling.

there are a couple online support groups that I know of the first is www.abcsurvivors.net, for adult bone cancer survivors. and the other id www.acor.org, online cancer resources which has various groups, ex. otsteo gr and depression. also, depending on where you live there are programs like Gilda's Club and the Wellness Center which are for anyone whose life has been touched by cancer.

keep on keeping on... char

RockinRobin
Posts: 4
Joined: Sep 2004

Don't know about support groups, but I am searching for another person who had a sacral chordoma. You did, right? Please e-mail me at rzoesch@aol.com. I would love to hear from you. I received all my cancer treatments at Massachusetts General Hospital. Surgery 12/14/04, with 2 rounds of radiation, one before and one after surgery, both proton and photon beam radiation. I live in Akron, Ohio, but since Mass. General had a protocol treatment plan for chordoma patients, I went there. Luckily, I had friends who retired from Akron, Ohio to Watertown, Mass., just across the Charles River from Mass. General, so it was financially possible. I stayed with them for up to 2 months at one point. I call them my "Earth Angels"! I am 61 years old, female, 60 at time of diagnosis. How are you doing now, Char? I have urinary incontinence as a result of my cancer treatments and have to catheterize myself daily. I have had 7 UTIs (Urinary Tract Infections) since December of 2004, when I had my tailbone, S-4 and S-5 removed. My tumor was at the very end of my tailbone. Would love to start e-mailing with you and compare notes. Thanks. - Robin (RockinRobin in the cancer chat room)

EdithGerritsen's picture
EdithGerritsen
Posts: 2
Joined: Feb 2006

This is just me,
I had bone cancer 23 year ago, I had a prothesis in my right leg.
You know somehow I really feel happy that I am alive, I cannot run, but I can Paint, coook, learn languages, I cannot have children but I have my dogs, I cannot go to a Gym or play golf or..many sports, but I can swimm, walk. You know I broke my left ankle las december and the first thing that came to my mind .. Thnak God was not my right leg!
Try to see what you like and Can do I you will feel a lot better.And see if there is not something else deep inside that is bothering you.

Love
Edith

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