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Thread: new caregiver/new to forum

  1. #1

    new caregiver/new to forum

    Just wanted to say 'hi'. I am new to this forum and new to caregiving. I'm 29 and my husband is 43 and the one with the SCI. It's a long story, but I'll make it short. The problem started with spinal chondrosarcoma and he had 5 surgeries to debulk the tumor and decompress his spine. Everything was ok until he started chemo and his spinal chord swelled. Before the swelling, he was weak and in a chair, but he was still able to get around and transfer into his wheelchair, etc.
    After the swelling, he's lost everything from about mid-torso down. It's been a really tough adjustment for both of us. He's been bed-bound for the last year. We've both been through our share of self-pity.
    I'm so glad I found this place. Until I stumbled upon this forum, I was feeling pretty bleak. I have NO idea if the cancer is gone, but it seems to be stalled, at least, so my goal right now is to help him become as independent as possible so he can have as normal a life as possible. He's still got use of his arms and upper body. His neuro-oncologist wants to try a surgery that would gaurantee he'd never walk again, but is the best bet for getting rid of all the cancer. My husband is not ready to accept that just yet. I keep telling him that being in a wheel chair is NOT the end of the world. And here I am finding proof of that.
    I've already gotten a lot of good ideas from browsing here.
    Thanks to everyone!

  2. #2
    welcome to carecure!

  3. #3
    Senior Member
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    Hi!!

    Welcome to CC... keep coming back.... there is a wealth of knowledge and support here.

  4. #4
    Moderator Obieone's Avatar
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    Yes welcome new SCI wife ..... we have a saying around here that ... "we're sorry you had to look for us but awfully glad you found us "! If you need to know something just ask .. someone always has an answer albeit occasionally more entertaining than informative ... we try to cover all the bases ! And if you just need to vent by all means do that ..... we have ice cream, we have chocolate, we have rocks to hide behind ..... we even have a pipe we like to share .

    The holidays can be an especially stressful and difficult time for many of us here ... I suspect you're going to need us in the days ahead! Be sure and visit often .... this place can be like a good tonic just when you need it most!

    Obieone
    ~ Be the change you wish to see in the world ~ Mahatma Gandi


    " calling all Angels ...... calling all Angels ....walk me through this one .. don't leave me alone .... calling all Angels .... calling all Angels .... we're tryin' and we're hopin' cause we're not sure how ....... this .... goes ..."
    Jane Siberry

  5. #5
    Senior Member
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    Got a younger sister for me? What a huge age difference between you both. Hope your weekend went well.

  6. #6
    Senior Member kate's Avatar
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    Quote Originally Posted by new_SCI_wife
    His neuro-oncologist wants to try a surgery that would gaurantee he'd never walk again, but is the best bet for getting rid of all the cancer. My husband is not ready to accept that just yet. I keep telling him that being in a wheel chair is NOT the end of the world. And here I am finding proof of that.
    No, it's not the end of the world. It can feel that way, for sure, which is one reason it helps to nose around in these forums. People do choose to live well in spite of everything, and fight like hell for the possibility of a return to health. It's like a giant adjustment that you have to keep making on a daily basis, over and over again.

    I don't know how I would make the kind of choice you describe . . . is there a time pressure to do this quickly? Have you had 2nd opinions?

  7. #7
    Senior Member zillazangel's Avatar
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    Welcome, and I'll echo Obie - sorry you belong to this club, but glad you're here since you do. My husband is a high leve quad with nothing but a shoulder shrug and head movement and we somehow manage to have a fun life together. Lots of stress, and that is what this forum is for!! Post anytime, and nothing is off limits here, so be sure to ask for support when you need it. Welcome,

    Ami
    Wife of Chad (C4/5 since 1988), mom of a great teenager

  8. #8
    Senior Member WM's Avatar
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    Hi new SCI wife! I feel for you and all that you and your spouse have been through and are going through! And due to the tough decisions ahead of you as well! My guy has been a paraplegic with quite a few health issues and severe chronic pain a little over 17 years now. Even so, there are still good times. It's just sometimes harder to find them, have to do more working at it than other people may, but it's still possible I know this has got to be a huge adjustment for you both. Hang in there and be good to yourselves. I know you have got to be very physically and emotionally drained, so please do not forget to take care of YOU. That's just as important as helping your hubby! Don't forget it!
    "I just want you to know, it was the best time ever." J.F.F.

  9. #9

    Life is good

    I to have just found this site. Its been 14 years since my accident it took awhile to figure out what i could do and what i couldn't do.Then my wife and i started putting are lives back together it isn't the same life.We learned how to do thinks differently. You might have to give your husband time to adjust but don't let him give up and please don't give up on him because i know thinks do get better.

  10. #10
    Senior Member kate's Avatar
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    Quote Originally Posted by Scott Jandrain
    I to have just found this site. Its been 14 years since my accident it took awhile to figure out what i could do and what i couldn't do.Then my wife and i started putting are lives back together it isn't the same life.We learned how to do thinks differently. You might have to give your husband time to adjust but don't let him give up and please don't give up on him because i know thinks do get better.
    Welcome to you, too, Scott.

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