Hello all,
My husband was diagnosed with this a month ago. Before that we only knew it was a tumour.
Unfortunately he has not been given any treatment apart from steroids.
Surgery not possible and no radio or chemotherapy will be effective.
I have lots of support from District nurses and hospice at home nurses.
We came out of hospital with a package of care, but no follow up from neurology.
GP has been amazing and so have friends and family.
I’m finding it difficult to remain positive.
Im just taking every day as it comes.
We didn’t really have support from neurology in hospital and still haven’t now he’s home.
Is there anything I can look at to see what the future will bring.
HI sillylinda
a warm welcome to the online community. So sorry to hear about all that's going on.
I supported my late husband through the 3 years of his Glioblastoma and had a love/hate relationship with his medical team to be honest. He was able to have surgery and the neurosurgeon and his team were fantastic. The oncolocogy weren't so great. G was passed into the palliative care phase about 8 months before he passed and I was left feeling that the oncologist couldn't wait to hand us over. We never heard from him again. I guess what I'm trying to say is don't go looking to neurology for support. Focus on building the local support network around you both.
Being passed into the palliative care phase was the best thing that happened to us all as a family during G's journey. We got to know the local community nurses and the local community hospice team. Having a local phone number that I could call 24/7 and know that help was at the other end lifted a huge weight from my shoulders.
G chose to die in our local hospice and they were fantastic. They wrapped their arms round all of us and ensured that he passed peacefully and pain free. The staff had got to know us as a family so we weren't surrounded by strangers and that was a huge help.
Everyone's journey is unique. Take it a day at a time. Its an emotional rollercoaster ride for all involved so please make sure that you take some "me time" to recharge your batteries too. I personally drew a lot of support from this community. There's another couple of groups you might want to explore-
Cancer carers forum | Macmillan Online Community
Glioblastoma multiforme brain tumour forum | Macmillan Online Community
I've written a few blogs for MacMillan's community blog space. These two might help too in some small way
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's anything I can support with, just ask. I'll be open and honest with you.
For now though I'm sending you a huge virtual hug and lots of strength.
love n hugs
Wee Me xxx
Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm
