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

I am miserable. I do have help driving and next week we might stay at a hotel. I am finding this so very hard. I am sure the virus makes it worse since no one can visit us. I think his confusion is worse and the thought that they said treatments might not work scares me.

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@rosez oh, I am so sorry to hear this. Have you considered Meals on Wheels? They can deliver, for a very small fee, so that you have dinner when you get home. Have you. Been able to speak with the doctor again?

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@becsbuddy

@rosez oh, I am so sorry to hear this. Have you considered Meals on Wheels? They can deliver, for a very small fee, so that you have dinner when you get home. Have you. Been able to speak with the doctor again?

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We see the doctor every week. He says you are doing good, I'll see you next week. Actually he might start getting worse next week they said because radiation might cause swelling in his brain and make him worse.
I am home early enough to cook and neighbors have been sending us meals.

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@hopeful33250

Hello @rosez,

I've just been reading your conversations about your husband's illness and some of the difficulties you've experienced along the way. I can understand your sadness and feelings of being scared. When you say, "the thought that they said treatments might not work scares me" is very understandable given your circumstances right now. I'm so glad that you joined Mayo Connect and I hope you are finding support along the way both in your community of family and friends as well as here on Connect

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Because of the virus, my family and friends cannot help me. My children all live out of state so they cannot come here. Most of my neighbors are snow birds and have already left or leaving soon.

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@rosez

Because of the virus, my family and friends cannot help me. My children all live out of state so they cannot come here. Most of my neighbors are snow birds and have already left or leaving soon.

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Hi again, @rosez You talk about so many important feelings in your posts caused by caregiving! I, too, had no help with my wife so I understand your feelings of isolation and wondering how to carry on all the multitude of required tasks. I'm hoping you have at least a couple neighbors who aren't snowbirds. I find even waving across the yard these days is good for my mental health -- and a smile can go a long way to boost my spirits.

I found it interesting how you said your husband's doc parrots 'you're doing good'. My wife and I heard this at every one of her appointments with her primary care doc that it made both of us uneasy. We'd explain a change, something new happening, etc. and yet we were always 'doing fine'. I don't remember exactly when but one appointment when my wife was explaining a new tremor she was having, the doc saying 'well, you're still doing fine' and my wife looking at me and saying out loud 'Scott, do you think she's as full of bull (deleted) as I do?' It caught me so by surprise I burst out laughing! Not the most gentile way to get the doctor to actually listen, but it did the trick!

If I may ask, how much longer is your husband's course of chemo and radiation set for?

Sending Strength, Courage, and Peace

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@IndianaScott

Hi again, @rosez You talk about so many important feelings in your posts caused by caregiving! I, too, had no help with my wife so I understand your feelings of isolation and wondering how to carry on all the multitude of required tasks. I'm hoping you have at least a couple neighbors who aren't snowbirds. I find even waving across the yard these days is good for my mental health -- and a smile can go a long way to boost my spirits.

I found it interesting how you said your husband's doc parrots 'you're doing good'. My wife and I heard this at every one of her appointments with her primary care doc that it made both of us uneasy. We'd explain a change, something new happening, etc. and yet we were always 'doing fine'. I don't remember exactly when but one appointment when my wife was explaining a new tremor she was having, the doc saying 'well, you're still doing fine' and my wife looking at me and saying out loud 'Scott, do you think she's as full of bull (deleted) as I do?' It caught me so by surprise I burst out laughing! Not the most gentile way to get the doctor to actually listen, but it did the trick!

If I may ask, how much longer is your husband's course of chemo and radiation set for?

Sending Strength, Courage, and Peace

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He has three more weeks of chemo and radiation and then we wait a month for MRI to see if it worked

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@rosez

We see the doctor every week. He says you are doing good, I'll see you next week. Actually he might start getting worse next week they said because radiation might cause swelling in his brain and make him worse.
I am home early enough to cook and neighbors have been sending us meals.

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@rosez I’m so glad to hear that the neighbors are helping with meals. It sure can make a difference! About your husband and radiation to the brain. The effects of radiation therapy are cumulative so the fatigue will get harder to deal with. That’s the time you may want to stay near the hospital. If he is extremely tired, you’ll find that you have to do more for him and that will be hard for you. I’d hate for you to get totally worn out. Cyber hug to you!

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@becsbuddy

@rosez I’m so glad to hear that the neighbors are helping with meals. It sure can make a difference! About your husband and radiation to the brain. The effects of radiation therapy are cumulative so the fatigue will get harder to deal with. That’s the time you may want to stay near the hospital. If he is extremely tired, you’ll find that you have to do more for him and that will be hard for you. I’d hate for you to get totally worn out. Cyber hug to you!

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Thank you

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Hello Rosez @rosez, I'm sorry to hear about your husband's condition (I just read your first post). I don't know how changed your husband's attitude, but I thought that my personal experience could perhaps help you.
I myself have a WHO4 glioblastoma located in the 3rd ventricle (limbic system). When my tumor is bleeding, it presses on the thalamus and hypothalamus, which changes my character. I no longer feel emotions, I become more passive, I speak less, I lose the desire to do things. It does not make me sad but it is difficult for those around me to see me like this. I thought to myself that perhaps your husband does not live his situation as you perceive it. It is very mysterious how the brain reacts. It depends on the location of the tumor. For my part, since the hemorrhage has subsided and I have become myself again, I no longer see this behavior (that some older people, looking into the void ...) in the same way. I remember that I was not unhappy contrary to appearances. I was living in the moment and I felt pretty good (because I no longer felt stress). I remember I felt that I was not alone, that my husband was there for me and that I could trust him. Also, during chemotherapy, I put myself in "conservation" mode, in a small ball to preserve what I had left of energy. What worries me today is the distress of those I love. I now try to communicate my impressions to my family so that they know that, for my part, I was not unhappy and they did well.
Courage. There is always hope and the most comforting in illness is the love and tenderness received from those we love.

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Thank you for sharing your story

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Today starts week 5. I feel he is doing good but I am sinking. I am no good at this and he is constantly angry at me. I find it very difficult to understand him sometimes and my sisters make me feel like I am not patient enough. I want to cut myself off from everyone.

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