Hi everyone I'm new here and never done this before.
My husband who is 55 had his brain tumour removed 10 weeks ago and is meant to start radio and chemo next week. However, we are currently waiting in A&E as he displayed stroke like symptoms and has then had 2 facial seizures. They've CT scanned and the tumour is back at 2.4cm in a different section of his brain but close to previous section. We don't know what the plan is yet. Just more waiting. We expected it to come back and feel like it might not be so big if treatment had started a little sooner. We've been waiting for his treatment to start as a positive and now it feels like the plans might change. I don't now what happens next, except I have to tell our children it's back!
Thank you for reading
XX
Hi Butterfly,
Welcome to the forum and so sorry to hear your husband's situation. I care for my my wife who has a GBM and we're 14 months in. She was able to have debulking surgery followed by radio and chemotherapy and whilst the scan isn't clear she doesn't have regrowth yet.
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.
When it comes to the practical and emotional challenges of supporting family and friends you may also benefit from joining our Carers only support group where you will connect with others navigating the same support challenges.
Have you or your husband been offered any counselling at all? Either way it’s always good to talk so please remember you can call the Macmillan 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.
Talking to people face to face can be very helpful so do check to see if you have any Local Macmillan Support in your area, do also check for a local Maggie's Centre as these folks are amazing. Or it may be as is the case for me that there are other local charities that can support you.
I really hope the clinical team can provide a clear course of action on what happens next for your husband. Please do feel free to come back here with any questions or just vent how you're feeling.
All the best,
Chris
HI Butterflyx4
oh I just want to send a huge hug your way. This too cruel.
I've been supporting my husband (now 53) through his GBM4 journey since Sept 2020. Even though we're all told it'll come back it's still a cruel blow when it does. We're further down the line than a lot of folk on here. G has been in the palliative care phase since the end of Feb 2023. I shudder to think what size his GBM is now. They stopped doing scans 6 months ago. At that point the oncologist told us he had a few short weeks, maybe 2/3 months...and he's still going, albeit he is slowing down.
Chris has already shared most of the advice I would offer but please remember you can reach out here anytime. You're not alone. We're here for you and we get it.
It’s always good to talk so please remember that you can also call the Macmillan 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.
Please make sure you take care of your wee self here too. It's a gruelling journey and taking some "me time" is essential to ensure you're in the best position to support your husband.
sending you love and light and hugs
Wee Me xx
Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm
