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Supporting Glioblastoma Patient: What can I expect as the caregiver?

Posted by mgm4kc @mgm4kc, May 10 8:38am

My husband will have resection surgery next week. What should I expect when he comes home? How can I prepare? It's me, my husband and the dog... a couple of friends are very supportive but I worry losing these connections as our lifestyle changes due to treatment. Thanks for your insight and sharing of experiences, lessons learned ...

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Mentor
Becky, Volunteer Mentor | @becsbuddy | Oct 25 5:50pm
In reply to @birdlmao "@justasmalltowngirl hello I am new to this group. My mom has glioblastoma grade 4 and was..." + (show)
Profile picture for birdlmao @birdlmao

@justasmalltowngirl hello I am new to this group. My mom has glioblastoma grade 4 and was diagnosed last year dec. had surgery on nov.1 and then we got the pathology report back on dec.1.
She did radiation 3 weeks, had c-diff she had a really hard time. She did 6 months of chemo.
They told us the tumor didn’t comeback 2 weeks later we met with the surgeon and she had another surgery . She was
Monday surgery day, Tuesday icu and Wednesday home. Crazy right?
She ended back in the hospital 2 week after that due to a fall and hurt her head. They did about 4 ct scans. They didn’t say much but a little inflammation. Now all she does is sleeps all the time and is really confused!!!! I have been trying to get her to urgent care to get her 2 staples in head removed but she has no memory. Is this normal? Do you think she will return to normal or is this the new norm?? Nobody is telling me nothing.. is she declining? I don’t know if you can answer me but at least give me some info if you can that is… thank you so much for reading this long msg! Amber

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@birdlmao You certainly have a hard job in caring for your mom.
https://www.mayoclinic.org/diseases-conditions/glioblastoma/symptoms-causes/syc-20569077
Your mom has hit a stage with glioblastoma that can be pretty common. She just wants to sleep. You can play some of her favorite music that might stimulate her brain. Do you have nurses aides whom come to help you? Have you contacted Hospice for help? While your mom is in bed, you want to keep her comfortable. Bed baths, skin care, oral care, anything you can think of that will comfortable. And talk to her! And call her doctor—they know all the details!
Are you doing all the care by yourself? Any siblings to help?

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tpq | @tpq | Nov 2 11:25am
In reply to @mattk56 "We are on very similar paths. My wife stays active, with taking daily 1-2 mile walks...." + (show)
Profile picture for mattk56 @mattk56

We are on very similar paths. My wife stays active, with taking daily 1-2 mile walks. She is also on a keto-genic diet- no sugar and low carbs. She is also on a strict supplement regimen to decrease inflammation and boost immune system. Despite all this, the fatigue is real, and she often has to push through it. I know everyone is different, but generally anything he can do to improve his health can be helpful. Fresh, organic, low sugar fruits and veggies; fresh air and sunshine ( wear sunscreen and cover up when undergoing treatment); and something we need to do more of: laugh and love life! Feel free to write back- we're all in this battle together.

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@mattk56 hi have you seen any changes being on the keto diet. There is a doctor in Boston who has written many papers on keto helping with GLB recovery. He doesn't get a lot of attention from the medical profession but seems pretty serious in his approach

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mattk56 | @mattk56 | Nov 3 7:53am
In reply to @tpq "@mattk56 hi have you seen any changes being on the keto diet. There is a doctor..." + (show)
Profile picture for tpq @tpq

@mattk56 hi have you seen any changes being on the keto diet. There is a doctor in Boston who has written many papers on keto helping with GLB recovery. He doesn't get a lot of attention from the medical profession but seems pretty serious in his approach

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@tpq Its always hard to point to any one thing and say that this is making a positive difference. But I believe the keto diet has made a difference. I view cancer as a metabolic disorder, and anything that can be done on that level gives one an advantage. The keto diet, with its limitations on glycogen (carbs and sugars), has to have an impact on cancer progression. Could you share the docs name in Boston? I'd like to see what he has to say. I'm not surprised that he isn't getting much attention.

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Moderator
Colleen Young, Connect Director | @colleenyoung | Nov 16 3:23pm
In reply to @birdlmao "@justasmalltowngirl hello I am new to this group. My mom has glioblastoma grade 4 and was..." + (show)
Profile picture for birdlmao @birdlmao

@justasmalltowngirl hello I am new to this group. My mom has glioblastoma grade 4 and was diagnosed last year dec. had surgery on nov.1 and then we got the pathology report back on dec.1.
She did radiation 3 weeks, had c-diff she had a really hard time. She did 6 months of chemo.
They told us the tumor didn’t comeback 2 weeks later we met with the surgeon and she had another surgery . She was
Monday surgery day, Tuesday icu and Wednesday home. Crazy right?
She ended back in the hospital 2 week after that due to a fall and hurt her head. They did about 4 ct scans. They didn’t say much but a little inflammation. Now all she does is sleeps all the time and is really confused!!!! I have been trying to get her to urgent care to get her 2 staples in head removed but she has no memory. Is this normal? Do you think she will return to normal or is this the new norm?? Nobody is telling me nothing.. is she declining? I don’t know if you can answer me but at least give me some info if you can that is… thank you so much for reading this long msg! Amber

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@birdlmao, how are you and your mom doing? Any update? Thinking of you.

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