New with Ostesarcoma...

angelred1 · New User Joined: 05 Dec 2004 Posts: 2 Location: none

Hello, I am so pleased to have found this site. I am almost 41 yrs old and I have stage 4 osteosarcoma that has metatised(sp?) from my hip, to my spine, to my lung. I have searched for a cancer forum, I live in the middle of nowhere and there are few who don't turn up their noses at me. I am in a wheelchair and on O2, I went through 3 back surgeries before they noticed the 7 tumors on my hip/lower spine, they surgically fused S-1,to L-4, it didn't hold, as soon as cancer hit there, the fusion started slipping. I live in constant pain, and my life has change so much in the past 7-8 months. This is when I found out I'd be a full-timer with thee chair, and was told "learn to live with it". Well, I'm not doing so good at it, it's frustrating when everything I need is out of reach so my babies(7&4) can't hurt themselves, yet makes it almost impossible for me to function half way normally, and that's not when I'm drugged out of my mind, I have 2 caregivers that take turns caring for me so you'd think it would be easy, no way!! Well, I have bored you long enough with my story, might I have the pleasure of hearing yours? I enjoy talking with people, they sometimes help me see the forest through the trees, so to speak.
Thank you for allowing me to vent.
[b]Keep fighting the Great Fight!!![/b]

leo · Contributor Joined: 23 Sep 2004 Posts: 1575

Hello

Thanks for posting. You certainly have a great attitude, and you have 2 wonderful kids to live for. You can always come here for support.

best regards,
Leo
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Disclaimer: this information is for informational purposes only. It is not medical advice.

Cassie · Regular Joined: 09 Dec 2004 Posts: 10 Location: AZ

Hi, Angelred,
I'm having trouble posting messages, but will try this again, so if the other shows up later and repeats information here, you'll know why!

Your post moved me and I'd love to keep you and your family in my prayers if you'd like. My experience is with breast cancer which, though it's led to lymphedema, is not so disabling as your situation. I've had two mastectomies, chemo, radiation, and am now on hormonal therapy. Also developed some heart rate problems from the chemo drugs, but that's easier to control than the lymphedema, which involves ongoing therapy, self-management, special exercises, and compression garments (arm, hand, and chest).

I have two kids at home as well, though they're older than yours--24 and 25--both learning disabled, one (Dara) with diabetes since age 15 months, the other (Tony) autistic. They're such a gift, keep me from focusing exclusively on myself and offer so much love, but they're also the source of my major frustration: not being able to care for them the way I'd like. My husband has been wonderful and I certainly hope you have some such support as well (do you?), though I do understand it's rare.

I wondered if you'd had anyone come to your home and help you to make it more efficient for your situation. I'm not sure if that would be an OT, a public health nurse, or a specialized social worker, but I'm willing to bet there's somebody in your state/city/community whose job it is to do just that. They can often suggest simple things that make specific jobs easier, or even offer suggestions for financing bigger alterations as needed. If you can connect with someone like that they can make a big difference in your sense of independence and potential.

I'm praying that there will be some moment today of special satisfaction and joy that'll give you a real lift,
Cassie

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