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

I am praying for you and your husband. My brother has been diagnosed with glioblastoma. I believe that new therapies car T cell gene therapy, oncolytic viruses, TMZ and radiotherapy and TTField offer hope. More hope than what you may believe now.

Make sure to have him use sun screen when going outside the drugs can cause sunburn which hurts!

@mgm4kc, I added your discussion to the Brain Tumor support group as well so you can meet fellow glioblastoma caregivers like @IndianaScott @saintdijo @lemertens @red77465 @angls64 @marybeths @alibit11 @ruthannray.

@mgm4kc, how did your husband's surgery go? How is recovery going? And how are YOU doing?

I added an update….looks more like I commented on my own site tho….not sure. But STILL ENDURING I Hate this Cancer

Hi this is Greg and Toni (his girlfriend) - The first week was really hard. Not only for Greg (has stage four glioblastoma) but for me as well. He never really got weaker. He was more so impulsive when walking. He told me alot he was "lost". He had surgery last month on the 12th and finally he started acting like his old self. He still has aphagia but isn't "lost" anymore. TIPS: Get a cold cap off amazon - 20 dollar grey one. Greg tried to not use pain meds at all - he got discharged the second day after surgery. He was severely confused. and i was terrified he was going to fall or accidently over dose by taking too many medications. - We had him sleep upstairs. So when I was at work when he was at home - He wouldn't have to be going up or down stairs when I wasn't there. He is very strong and 48 years old. Going up the stairs the first time after surgery he was shocked how much it made him feel dizzy and*
+ legs felt weak. Steroids also made greg super HANGRY - i am so glad he got off steroids .. He would get so aggitated on them. That was another thing about gregs personality that changed - he gets aggitated or what it seems like he is upset . I bought him multiple journals and also like "About me" journals from target and amazon. So if he were to lose memory he would always be able too look back and read what he wrote in hopes hed later regain memory.. best idea ever. he does have short term memory loss. -its gotten a little better but i'm thinking hes going to have the short term memory loss forever. He also got pretty sad he isnt able to work anymore. And we had alot of help with having close family facetime him alot while i was at work .It does take him awhile to process what i say to him though still. Sorry I am rambling on about a bunch of different things. But these are all things I wish some one would of told me. I am so happy I found this website. I wish I would of found this sooner. It's such a scary situation and I hope you find a couple things I said helpful !

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.

I’m glad for you and your mother. My son in law has glioblastomas in the frontal lobe. Please pray for David. It’s really hard in my daughter and the kids and me. He had radiation but one tumor is aggressively growing. We’ve all prayed

Thank you for your story it helps so much

So happy for you that it’s not progressing