So sad: Husband has glioma and I feel he is fading away

Posted by rosez @rosez, May 9, 2020

My husband has a grade 2 glioma and I feel as if he is fading away. He mixes up words and is very quiet. He just finished his first week of chemo and radiation.

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@rosez

Your sight is for medical questions., not for ranting so I do not see a reason for staying.

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Not at all, @rosez Please stay and know we all unload from time to time here! I did that often when I was first in the caregiving discussion group! We all need to talk at times and this is a great place to do it! All caregivers need other caregivers!

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@IndianaScott

Not at all, @rosez Please stay and know we all unload from time to time here! I did that often when I was first in the caregiving discussion group! We all need to talk at times and this is a great place to do it! All caregivers need other caregivers!

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Thanks

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@rosez

Your sight is for medical questions., not for ranting so I do not see a reason for staying.

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@rosez As patients and caregivers, we all need to rant at times. Sometimes writing out a rant can lead to clarity for the person writing. It also gives members the opportunity to share and offer solutions. Rants are welcome! Please continue to check in and share. How are you today?

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@colleenyoung

@rosez As patients and caregivers, we all need to rant at times. Sometimes writing out a rant can lead to clarity for the person writing. It also gives members the opportunity to share and offer solutions. Rants are welcome! Please continue to check in and share. How are you today?

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Today is the first day since this all began that I didn't want to cry all day. Two days ago I felt as if I didn't care anymore. For the sake of my sanity, i am going back to the gym. My trainer is going to set up a corner no one uses and I am going to try to start beading jewelry again.
I don't see much of an improvement in my husband but will know after the 16th when he goes for an MRI.

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@rosez

Today is the first day since this all began that I didn't want to cry all day. Two days ago I felt as if I didn't care anymore. For the sake of my sanity, i am going back to the gym. My trainer is going to set up a corner no one uses and I am going to try to start beading jewelry again.
I don't see much of an improvement in my husband but will know after the 16th when he goes for an MRI.

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@rosez ... I am praying for you. Caring for others within their expectations is always difficult, and rarely allows you to feel that you can make a difference. You have been there through thick and thin, standing by your husband's side when he needs you most. It takes strength, courage and commitment to get through it, and compassion for what he is experiencing; I hope he is recognizing the efforts you're making for his well-being. If he isn't, it may be due to the disease. I have a meningioma that affects my emotions when I have symptoms; my feelings are "flat" and I have a lot of difficulty expressing thanks since I don't 'feel' grateful. When it is day-in-day-out 24/7, it wears me out as well. I hope your husband realizes that you are a Godsend to him and loves you more for your care and devotion to him. You deserve it!

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@christinehigdem

@rosez ... I am praying for you. Caring for others within their expectations is always difficult, and rarely allows you to feel that you can make a difference. You have been there through thick and thin, standing by your husband's side when he needs you most. It takes strength, courage and commitment to get through it, and compassion for what he is experiencing; I hope he is recognizing the efforts you're making for his well-being. If he isn't, it may be due to the disease. I have a meningioma that affects my emotions when I have symptoms; my feelings are "flat" and I have a lot of difficulty expressing thanks since I don't 'feel' grateful. When it is day-in-day-out 24/7, it wears me out as well. I hope your husband realizes that you are a Godsend to him and loves you more for your care and devotion to him. You deserve it!

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Thank you

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@christinehigdem

@rosez ... I am praying for you. Caring for others within their expectations is always difficult, and rarely allows you to feel that you can make a difference. You have been there through thick and thin, standing by your husband's side when he needs you most. It takes strength, courage and commitment to get through it, and compassion for what he is experiencing; I hope he is recognizing the efforts you're making for his well-being. If he isn't, it may be due to the disease. I have a meningioma that affects my emotions when I have symptoms; my feelings are "flat" and I have a lot of difficulty expressing thanks since I don't 'feel' grateful. When it is day-in-day-out 24/7, it wears me out as well. I hope your husband realizes that you are a Godsend to him and loves you more for your care and devotion to him. You deserve it!

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My joy was short lived. He tried to play 9 holes of golf and came home exhausted. He showered and went to sleep. It breaks my heart to see him so weak. He can hardly walk and stumbles. He tried calling me but couldn't find my phone number. This has aged him sooo much.

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Six weeks of radiation and chemo are now over. He goes on maintenance. Tumor has not grown which the doctors are pleased with. Unfortunately, side effects are here to stay. He shakes, is quiet, never remembers anything, not allowed to drive, etc. This is not what I was expecting and did not know my life would totally change.

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@rosez

Six weeks of radiation and chemo are now over. He goes on maintenance. Tumor has not grown which the doctors are pleased with. Unfortunately, side effects are here to stay. He shakes, is quiet, never remembers anything, not allowed to drive, etc. This is not what I was expecting and did not know my life would totally change.

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Hello @rosez Good to hear from you again here! I might imagine your husband is relieved to be done with his most recent radiation and chemo regimen.

Your post helped me recall the tough times in life when my wife would say to me 'this isn't what I expected from life'. I would remind her of a phone conversation she and I had in the early days of our courtship. She was in one city while I was hundreds of miles away in another. We were on the phone, late at night (remember waiting until after 11:00 pm so long distance was the cheapest?), talking about the future when she said to me 'you know, Scott, neither of us knows what the future will hold nor how easy or hard it might be. I know we don't have much of anything right now, but I know I'd rather struggle with you than without you'. I told her I absolutely agreed!

That sentiment never changed for us. I always remembered those words -- that we’d rather struggle together than struggle apart. After we married our life held more than a share of little struggles, significant struggles, and then the monumental struggle of her years with brain cancer. As partners there were struggles where she shouldered the majority of the load, then other times when I did. In each of those times we’d remind each other of that old phone call.

From the day I met my future wife nothing was ever what I had thought it would be. At first I didn’t even think we’d ever marry since we were both engaged at the time, just not to each other. 🙂 I guess I’m trying to say none of us ever know the twists and turns our lives will take or where our paths will lead. Certainly times of caregiving are a prime example of this! I never expected to be my wife’s caregiver at 49 nor did she expect to have to battle for her life as she did.

Wishing I had some magic words to soothe your way, but at least I can send strength, courage, and peace

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That’s beautiful... you both are blessed ❣️

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