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djwill5
Posts: 13
Joined: Feb 2013

I am here, looking for someone that is going through something similar, that knows what I'm going through.  I have searched the internet looking for online support groups, with little success.  Last month my husband was diagnosed with GBM (brain cancer).  During surgery to remove the tumor, the doctor just happened to make David's entire right side useless.  Anyways, next month, I'm hoping to leave my job and become a full time caregiver (my mother will be forever greatful).  We have 2 grown sons, 2 granddaughters, and a very active teenager who's a Sophomore in high school.  Anyone out there just want to chat?

Deborah J Cornwall's picture
Deborah J Cornwall
Posts: 32
Joined: Feb 2013

I haven't been through something similar, but I've interviewed people who have. I'm so sorry you and your husband have been faced with this challenge. I think the most important question is whether you are confident about his current medical team in terms of whatever follow-up and monitoring is involved. I suspect that any kind of brain surgery offers risks, but I'm sure you couldn't imagine the impact of dealing with such an aftermath. I hope that your grown sons are nearby to be able to help you with the challenges of your teenage child, for whom this has to be a stressful time as well.

You might want to look for a local support group for caregivers. Check to see if the Cancer Support Community has a local affiliate. They're really impressive in their caring and capabilities, and the caregivers who participate in their support activities feel a wonderful sense of community and togetherness. They're often able to help each other. If not this one, there may be another such support group through your husband's cancer center, or perhaps the American Cancer Society can help you find one. They generally are very knowledgeable about local resources. Try calling them either locally or at their help line at 1-800-ACS-2345 24/7.

I wish you the best. Please know that many of us out hear are sending you good thoughts and best wishes.

djwill5
Posts: 13
Joined: Feb 2013

I have considered looking for a support group, however, we live in a very small "village" of about 100 and the next town is only about 12,000.  I'm sure if I quit making excuses and look, they are there.  I'm really more worried about our daughter.  As far as follow up care, we aren't seeking traditional treatment, we're going the alternative route.  We didn't want to be so sick from treatment, that would only add months, that we couldn't enjoy what months we have left.  We want to go to our daughter's ball games, and continue on our Church boards and other activities.  We were afraid with chemo and radiation, that wouldn't be possible.  Our family doctor is great, and seems to give us anything we want, as far as tests and scans and such.  We are in physical therapy twice a week, after spending 2 weeks at a rehab hospital learning how to walk, dress, eat, all of that good stuff.  We're in hopes that David can regain some use of his right arm, that now lives in a sling.  Thank you for listening to me ramble :)

Deborah J Cornwall's picture
Deborah J Cornwall
Posts: 32
Joined: Feb 2013

DJ, if this site doesn't do it for you, you might try the Cancer Support Community, which has a virtual and facilitated 90-minute support session weekly. Go to cancersupportcommunity.org and click on "support" and then on "on-line support" and you'll see it.

Best of luck to you all. Your "rambling" is important conversation, and I value your story and your having shared it.

 

Deborah J Cornwall's picture
Deborah J Cornwall
Posts: 32
Joined: Feb 2013

DJ, if this site doesn't do it for you, you might try the Cancer Support Community, which has a virtual and facilitated 90-minute support session weekly. Go to cancersupportcommunity.org and click on "support" and then on "on-line support" and you'll see it.

Best of luck to you all. Your "rambling" is important conversation, and I value your story and your having shared it.

 

Deborah J Cornwall's picture
Deborah J Cornwall
Posts: 32
Joined: Feb 2013

 

 

Deborah J Cornwall's picture
Deborah J Cornwall
Posts: 32
Joined: Feb 2013

 

 

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