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

Posted by mgm4kc @mgm4kc, May 10, 2025

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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annagayle | @annagayle | Jan 28 12:45pm
In reply to @becsbuddy "@annagayle Please tell Oscar thank you from all of us. We all know how difficult providing..." + (show)
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@annagayle Please tell Oscar thank you from all of us. We all know how difficult providing care is. And thank you to you, also. You’ve provided a loving home for Justin and have welcomed Oscar into your home.. thank you

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@becsbuddy ...thank u all so much. I will definitely pass this on to Oscar..I'm sure it will make him feel somewhat better about things..Oscar has definitely been our rock. The young man is nothing short of amazing ..thanks everyone

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maureent123 | @maureent123 | 2 hours ago
In reply to @justasmalltowngirl "Hello. I know I am late to the comment but I am a caregiver for my..." + (show)
Profile picture for justasmalltowngirl @justasmalltowngirl

Hello. I know I am late to the comment but I am a caregiver for my mom who had a grade 4 glioblastoma removed in October 2023. It was smack dab in the middle of the left side of the brain where we are. All our functions and speech etc. most people only live 18 months without treatment and she we were brought in one night after her surgery and told she wasn’t going to make it. Then all of a sudden she opened her eyes and asked for water and then everyday was a struggle, her right side partially paralyzed from the tumour removal along with really bad aphasia. But then all of a sudden she started getting a little feeling back here and there and she was healthily enough by August 2024 to start radiation and chemotherapy. She rocked it but after it was done is when she was super sick. All the way till Christmas. Then most of the radiation was out of her system and now she is still here and we are on month 20!!! So I suggest radiation if possible. It is worth it and did give her time and now they are saying she might get years. They don’t really know but she is the exception to the rule. She is in the 25% that live past 18 months. If you need anything at all or anyone reading this, please reach out. I have been through it all and trust me I can help. I can also tell you how to get funding and care. There is so many resources out there but you have to find them on your own. It’s sad really. You would think healthcare workers would help but they don’t. You will find that, help is very minimal and they will push you to take care of your loved one on your own but trust me, it takes a village. You need supports and help in so many ways. Please please reach out. You’re never alone. I will pray for you and your husband.

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@justasmalltowngirl Hello, I was just wondering how your mom is doing. My partner is starting 5 days on, 23 off chemo and after that he will be monitored with MRI scans. So far, apart loss of peripheral vision, you wouldn’t know anything was wrong. Your post about your mom has given me hope. We’re still at the 15-18 months prognosis, the consultant wouldn’t budge on that. We’re in the UK, not that’s relevant. I really hope your mom is still doing well and that you don’t mind me asking about her.

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