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

Greg and Toni,
I can so relate to your journey. My wife was diagnosed with GBM in Oct 2024, had surgery that removed about 80% of tumor, underwent the 6 wks of radiation and chemo. She is just about to finish up her 6th month of 5 day chemo every 28 days. She is also receiving Avastin infusions every 2 weeks. She is really doing incredibly well considering. She tolerates her treatments well, and can mostly care for herself. But like you guys noted, the cognitive struggles are real. She also deals with a lot of fatigue and tires out quickly.
I do my best to care for her and try to understand what she is going through. To be completely transparent, I often get impatient with her struggles, and then feel guilty later. I hate what this cancer/treatments has done to her, and to us. She retired from 40 yrs of teaching in June of 2024, and we had grand plans to enjoy retirement together. Cancer has robbed us of that time. We do our best to stay active, but it isn't always easy.
So we continue to stay the course. Her last scan looked good, with no signs of progression. We don't know what the plan of action will be once she completes these days of chemo. We are scheduled for a scan in the beginning of July, so I guess we will wait and see.
She has a tremendous faith from which she draws her strength. I should have a great faith as well, but I can't shake the bitterness and fear.
Thanks for taking the time to read this. Blessings!

does she have any tips for chemo and radiation ? anything i can buy to make greg's journey easier.
since last month he quit smoking cigarettes completely, he goes on a walk daily (usually about 2,000 steps) - We have been cutting out sugar out of our diets (since cancer feeds on glucose - sugar and carbs.. and chronic inflammation with high sugar intake, always since its ) and cutting down on salt/sodium as well ( increases inflammation, weakens the immune response, harms beneficial gut bacteria, raises blood pressure and swelling - could worsen edema.)

Greg and Toni,
I can so relate to your journey. My wife was diagnosed with GBM in Oct 2024, had surgery that removed about 80% of tumor, underwent the 6 wks of radiation and chemo. She is just about to finish up her 6th month of 5 day chemo every 28 days. She is also receiving Avastin infusions every 2 weeks. She is really doing incredibly well considering. She tolerates her treatments well, and can mostly care for herself. But like you guys noted, the cognitive struggles are real. She also deals with a lot of fatigue and tires out quickly.
I do my best to care for her and try to understand what she is going through. To be completely transparent, I often get impatient with her struggles, and then feel guilty later. I hate what this cancer/treatments has done to her, and to us. She retired from 40 yrs of teaching in June of 2024, and we had grand plans to enjoy retirement together. Cancer has robbed us of that time. We do our best to stay active, but it isn't always easy.
So we continue to stay the course. Her last scan looked good, with no signs of progression. We don't know what the plan of action will be once she completes these days of chemo. We are scheduled for a scan in the beginning of July, so I guess we will wait and see.
She has a tremendous faith from which she draws her strength. I should have a great faith as well, but I can't shake the bitterness and fear.
Thanks for taking the time to read this. Blessings!

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.

Thank you for your post. I am the caregiver for my son. We are working with three hospitals and the staffs have been great. However, we are going to need funding resources soon. They have not been able to provide and suggestions so far. I’m trying to research between treatments etc. I would appreciate any suggestions on organizations etc to reach out to.
Thank you

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.

Hello,
Do you know any agencies that could help watch my partner so I can take some time off?
Thank you.

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.

I could use some advice with my niece she just turned 26 yesterday and we are looking at long term care now and is struggling