a new normal

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a new normal

by xxoo6 on Sun Jun 12, 2016 07:18 PM

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My husband was diagnosed almost a month ago with Glioblastoma. He had surgery and was able to remove 90% of the tumor. I know every case is different and the unknown is scary as hell. He will begin Chemo and radiation within the next 2 weeks. When did you make changes to your home life? Did you move into one floor homes beforehand? I do not want anyone especially, him to think we are giving up. Did everyone keep things as is or make changes before needed? We have a large family and wondering what would be best? I understand we all will be living a new normal lfesyle.

RE: a new normal

by rmp1399 on Mon Jun 13, 2016 11:32 PM

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My mom fought gbm for over three years. She had a stroke from the tumor bleeding (that's how we found out about the gbm). She was a little weak in her left side after that so we put in grab bars in the bathrooms and showers and made sure there were railings on both sides of the stair cases. Does he have any deficits at this point? I wouldn't make changes or move. You want to make him feel as normal and comfortable as possible. Once my mom started declining....we moved a bed downstairs to the main level in our den room....which had a bathroom as well. There was no way she could safely get up the stairs at that point. But that was three years after diagnosis. He could live a very normal life for a while!! Just want you to know...during radiation my mom was very fatigued. She slept all the time. I was so scared that this was the end for her, but it was just the effects of the radiation. It actually lasts a while after the radiation is over. Encourage exercise when he can. It will help. But let him sleep when he needs it. The brain needs it. It is definitely a roller coaster but try to stay positive....and for us at least, found solace in prayer. This is a great place for help and answers.

RE: a new normal

by devonsvoice on Wed Jun 15, 2016 11:05 PM

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My husband was diagnosed four months ago with an inoperable GBM in his thalamus. The tumor is stable right now but did not decrease at all from initial treatment. He has left side deficits, and monthly Temodar has now been delayed twice due to platelets being under 100K. With all the seizure meds he's on, plus the left side issues, plus financial issues going forward, we have to move. No bed or bath downstairs. It's just the two of us. He's changed so much in four months that it's alarming. Everyone's situation is different, but if stairs become a danger, or financial circumstances warrant it, then my advice would be to move sooner rather than later, while he's well enough to handle the stress of a move. That having been said, due to future financial issues and the high cost of homes where we are, we have to leave our entire support system behind to afford another home, and it's tearing me up inside. My best to you, and I wish you weren't having to go through this.

RE: a new normal

by Jaimelee on Sun Jun 19, 2016 03:35 AM

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My husband had a "scrambled egg" size tumor on his left frontal lobe in '12. The imagining was jarring. But the Boston surgeon was great and confident enough to send him home two days later and also August of '15. Still scary as hell but we didn't have to change our living arrangements yet. Personally I'm going to wait till the last possible moment before making changes like that. 

Chemo and radiation will make him tired. There was a point where my husband suffered from brain swelling from the cocktail he was on, he even forgot my name just knew I was significant, but we got thought it. You'll get through it and suggest to not make any changes. 

RE: a new normal

by alibro2003 on Sun Jun 19, 2016 09:57 PM

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Hi, 

My dad aged 74 was diagnosed 15 months ago & he is doing fine & is just as normal. He walks 4 miles every day, gardens & does everyday tasks just as before. Every case is different but try to keep positive & take one day at a time. I wouldn't make any changes until you need to. You are going through an awful, scary time at the minute, but when I think back to the tears & sadness we went through 15 months ago, it didn't seem possible that we would have the good times that we have now. We don't know how long this will last but every day is really a blessing. Hopefully you will come through this tough time too & get back to normal. My dad recommends walking to combat the tiredness that chemo causes. Good luck & best wishes to you, your husband & all the family. Keep positive. 

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