H Lucy21
I'm so sorry to hear about all you and your husband have been through. It's cruel.
I can also empathise with you regarding the lack of support for the cognitive problems. My husband was diagnosed GBM4 in Sept 2020. His tumour and subsequent surgery caused cognitive problems. Initially he was offered speech and occupational therapy, but he decided at the time he didn't need them. To be fair at that point he probably didn't but as time has gone on, the picture is starting to change.
I'd suggest if your CNS hasn't already offered the support that you enquire about what's available. If that doesn't get you anywhere then try your GP.
It frustrates me that they seem to almost wash their hands of people and leave the family to flounder through trying to cope, as well as the person themselves.
This group is a really safe supportive space so please reach out here anytime. I understand how difficult this journey is for you too. Personally I've drawn a lot of support from this group and Glioblastoma multiforme brain tumour forum - Macmillan Online Community There's always someone around to listen who gets it. Someone to hold your hand and offer that virtual hug when its needed too. You're not alone.
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.
For now, I'm sending you a huge virtual hug. Please take care of yourself here too.
love n hugs
Wee Me xx
Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm
