Hi all, we found a tumor in my mom’s brain on her 60th last week. She underwent a craniotomy and the surgeon was able to do a gross total resection (including some area around the 5 centimeter tumor.) It is GBM stage 4.
I’m her daughter, and just at a complete loss of feeling. She is doing great - already walking 5k steps a day and super motivated to do this fight. She has not begun radiation/chemo, sounds like that may start soon.
My father will be the primary caregiver. I am 26 years old. Any advice here would be helpful. I don’t know many my age who have lost their mom nor do I know anyone with GBM. I’m sorry we are all here in this club together :(
Hi there,
Yes, welcome to the club no one wanted to join but I'm glad you found us. I care for my wife who has a GBM diagnosed this time last year and she's had debulking surgery, radiotherapy and chemotherapy and we're now in a treatment break.
I know how terrifying it all is but for someone with a GBM then it sounds like your mum is doing really well. The fact that the surgeon felt able to perform gross total resection is great news. The surgery is the biggest prognostic indicator for a GBM and many can't have it at all. Those that can often have debulking surgery which is where they have to leave some of the tumour behind, that's the case with my wife.
There's lots of really useful information on the Macmillan site about different aspects of cancer so if you haven't already have a good browse and come back with any questions. I found it really helpful just reading through the threads in this forum to see what others' experiences had been like. Although we are all looking after someone with, or suffer from, a GBM we all end up taking slightly different routes depending on how it progresses and local care provision.
I wasn't sure if you're UK based given your spelling of "mom" instead of "mum" but Macmillan do offer Support Services on 0808 808 00 00 - most services are open 8am to 8pm, 7 days a week Clicking here to see what is available. This service provides lots of cancer information, emotional support, benefit and financial guidance or just a listening ear.
If you have any questions at all about what might be coming then lots of us in the group have been through the radiotherapy and chemo journey so do feel free to ask anything about hat to expect.
All the best,
Chris
HI Faith23
I just wanted to echo Chris' warm welcome to the group. So sorry to hear about your mom's diagnosis. Life's too cruel.
My husband, then 50, was diagnosed GBM in Sept 2020 so I can empathise with what you are going through. At the time my son was 22 and my daughter 20.
Chris has already covered all the key points but you might also want to take a look at this link from the main website Supporting someone | Macmillan Cancer Support
This is a safe and supportive space so please reach out here anytime. There's always someone about to listen who gets it, someone to hold your hand and to offer a virtual hug when its needed. You're not alone. We've got you.
if there's any questions I can help answer, please just ask.
For now though I'm sending you all a huge virtual hug and lots of positive energy. Stay strong. Please make sure you take care of your wee self here too. It's a lot to process and it takes time. Taking time for yourself isn't selfish, it's essential to help keep your own batteries recharged,
love n hugs
Wee Me xx
Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm
