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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 | @rosez | Oct 25, 2020

Thank you. Distance because of Covid has ruined so many lives.

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Amanda Roe | @amandajro | Oct 25, 2020
In reply to @fwentz "Thank you, Amanda, for your kind words. No, we live far apart and at age 81..." + (show)
@fwentz

Thank you, Amanda, for your kind words. No, we live far apart and at age 81 I'm reluctant to travel there because of COVID. Fortunately though her children live nearby. She was living in a nursing home where they were not able to visit her. She became quite ill and was taken to the hospital. When it became clear she needed hospice care, my niece was able to move her to her place where the children are able to be with her 24/7 by trading shifts. I'm grateful for that. I'm also glad that I was able to travel cross country last September and had a good visit with her and my niece.

And my good thoughts go to @rosez and her husband in their grief.

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@fwentz I am sorry to hear of the distance between the pair of you but what an absolute gift her children were able to give your sister, and your entire family, by taking her in and caring for her in her final days and allow her to be with many loved ones. Has that provided you some comfort during this time? Have you been able to use technology (i.e. Facetime or something similar) to see and/or talk to her at all if she is able?

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1 reply
FWW | @fwentz | Oct 26, 2020
In reply to @amandajro "@fwentz I am sorry to hear of the distance between the pair of you but what..." + (show)
@amandajro

@fwentz I am sorry to hear of the distance between the pair of you but what an absolute gift her children were able to give your sister, and your entire family, by taking her in and caring for her in her final days and allow her to be with many loved ones. Has that provided you some comfort during this time? Have you been able to use technology (i.e. Facetime or something similar) to see and/or talk to her at all if she is able?

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A couple of weeks ago my niece called me when she was with my sister for an outside visit at the nursing home. I got a chance to chat with my sister although I did almost all of the talking. She had some one-word responses once in a while. But that was a bit of contact. It turns out my niece wasn't set up for WhatsApp and I wasn't set up for Viber then.

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Erika | @erikas | Nov 1, 2020
In reply to @rosez "Thank you for your words of comfort." + (show)
@rosez

Thank you for your words of comfort.

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@rosez I wanted to check in with you. I'm not going to ask you how you are doing because obviously you are grieving an unthinkable loss. I know you have supports, I'm wondering how you reach out to your supports and what that experience is like for you?

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1 reply
rosez | @rosez | Nov 2, 2020
In reply to @erikas "@rosez I wanted to check in with you. I'm not going to ask you how you..." + (show)
@erikas

@rosez I wanted to check in with you. I'm not going to ask you how you are doing because obviously you are grieving an unthinkable loss. I know you have supports, I'm wondering how you reach out to your supports and what that experience is like for you?

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I have 2 sisters here. I don't reach out to them. They have invited us to dinner. I did get in touch with one friend and asked them to go out for dinner.
Our world has ended.

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1 reply
Erika | @erikas | Nov 2, 2020
In reply to @rosez "I have 2 sisters here. I don't reach out to them. They have invited us to..." + (show)
@rosez

I have 2 sisters here. I don't reach out to them. They have invited us to dinner. I did get in touch with one friend and asked them to go out for dinner.
Our world has ended.

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@rosez You will find the Loss and Grief group helpful. Please see the link below.

Loss & Grief thread here: https://connect.mayoclinic.org/discussion/recent-totally-sudden-traumatic-loss-of-our-daughter-45/

It's positive that you will meet your friend out for dinner. Supports are so important in times like these. May I ask if you feel comfortable reaching out to your sisters as well?

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rosez | @rosez | Nov 2, 2020

My sisters have done enough for us. We have been eating at one sister one night a week

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thomhorowitz | @thomhorowitz | Apr 24 9:33pm
In reply to @colleenyoung "Welcome @rosez. I feel your sadness. I've added your message to the Caregivers group (https://connect.mayoclinic.org/group/caregivers/) as..." + (show)
@colleenyoung

Welcome @rosez. I feel your sadness.
I've added your message to the Caregivers group (https://connect.mayoclinic.org/group/caregivers/) as well as here in the Brain Tumor group.
You might also be interested in this discussion:
- Glioblastoma Multiforme and Cognitive Loss https://connect.mayoclinic.org/discussion/glio-blastoma-multiforma/

You are not alone. I'd like to bring a few members like @IndianaScott @donnamar @nursnis and @johns66. They've been there and understand your reality right now.

How many weeks of treatment will your husband have? Was he quiet and struggling to find words before treatment started?

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Had full resection with clear margins. Just finished 3 WEEKS RADIATION AND tmx. no REAL SIDE EFFECTS. LIVING FOR NEXT mri. need TO PROVE STATISTICS ARE WRONG!!!

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2 replies
Mentor
Sue, Volunteer Mentor | @sueinmn | Apr 25 9:02am
In reply to @thomhorowitz "Had full resection with clear margins. Just finished 3 WEEKS RADIATION AND tmx. no REAL SIDE..." + (show)
@thomhorowitz

Had full resection with clear margins. Just finished 3 WEEKS RADIATION AND tmx. no REAL SIDE EFFECTS. LIVING FOR NEXT mri. need TO PROVE STATISTICS ARE WRONG!!!

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I'm so glad to hear your good news! Clear margins is an awesome report. Keep up the positive attitude and keep us posted.
I'm pulling for you.
Sue

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thomhorowitz | @thomhorowitz | Apr 28 4:46pm
In reply to @thomhorowitz "Had full resection with clear margins. Just finished 3 WEEKS RADIATION AND tmx. no REAL SIDE..." + (show)
@thomhorowitz

Had full resection with clear margins. Just finished 3 WEEKS RADIATION AND tmx. no REAL SIDE EFFECTS. LIVING FOR NEXT mri. need TO PROVE STATISTICS ARE WRONG!!!

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Sadly the data from all care is lumped together. Important to find neuro- oncology team that has clinical trial options. There is a bell shaped curve even in medical specialties. I have two academic settings I am working with. Both have specialized teams working on glioblastoma. A reason I live in a big city with several medical schools.

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