My husband who is just 60 years old was diagnosed on Christmas Day with a Glioblastoma .He had a near complete resection in January but during surgery he hada stroke and has a Left Hemiparesis so is now needing to be hoisted in and out of bed and has gone from been independent and working full time to being housebound with x 4 care calls a day. He had an MRI prior to starting any radiotherapy and chemotherapy which showed some tumour next to his brain stem and in another area (vascular)so he is having chemotherapy only .His tumour is methylated .It is such a shock and very difficult to cope with as a family we are struggling .I just wondered if anyone else has had a similar situation ?
HI Tiffany
a warm welcome to the online community. I'm so sorry to hear about all that's been going on with your husband. Life is too cruel for words.
Everyone on here has a similar but different GBM story. I supported my late husband G through the three years of his GBM journey. He was 50 when he was diagnosed out of the blue in Sept 2020. For the vast majority his symptoms were more cognitive than physical. His tumour had impacted the part of his brain that controls speech, language and understanding. His eyesight was also compromised very early on. He also quickly lost the ability to read. Most of his symptoms up until the last few weeks were more like dementia than cancer so our journey was a bit different to some.
That said nothing prepares you for that diagnosis so please don't be too hard on yourself here. You've all found yourselves on a journey that you never expected to be on and it takes time to process all of that...lots of time. I likened G's journey to a long distance endurance race. I felt that I had been flung into this race with no kit, no training, no map, no idea of the course ahead or how long it was but just knew that I had to keep going. I was in your situation when I first discovered this community and over the years I drew a lot of personal support from this group plus Cancer carers forum | Macmillan Online Community
I also wrote a couple of community blogs for MacMillan that might resonate with you. Here's the link -
Caring for a partner with a brain tumour – a Community member’s story - Macmillan Online Community
“I’m fine”: how do you really cope as a carer? - Macmillan Online Community
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.
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.
If there is anything I can do to help here please just ask. I'll be open and honest with you at all times.
For now though I am sending you a huge virtual hug and lots of strength. You are coping with this so much better than you give yourself credit for. You'll just need to trust me on that.
love n hugs
Wee Me xxx
Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm
