Hello everyone.
My dad completed two rounds of PCV and didn’t even have any side effects but he has decided that he wants to stop treatment now.
He has been discharged from Oncology and will be transferred over to Palliative care in the community now.
I really admire dad as throughout this entire journey he’s been so calm and brave - it doesn’t seem to have phased him at all really. I feel like I’m on the verge of falling apart most days!
I think I am wondering what the next phase will be; dad is still very mentally coherent although I’ve noticed he’s not one for much conversation nowadays. This is very sad as we used to chat for ages about certain things.
Physically he’s a shell of the man he was - in bed most days and doesn’t want to get up or do anything. I think he’s exhausted. He’s also lost the vision in one eye and I think this has really knocked his confidence too.
What an awful disease - I feel like I’m grieving for parts of my dad that have left us already.
sending love to everyone here x
HI Suzuki750
thank you for sharing the update with us and I'm so sorry that you've not had better news.
I have to say when we were handed off to the local palliative care team, it was the best thing that could have happened to us as a family. It meant that I had a local number that someone would answer 24/7 should I need any help We were introduced to the local community nurses and local community hospice team who were amazing.
It also meant that when the end of the journey approached as a family we were surrounded by people who knew us and not complete strangers. That made a huge difference to myself and my two young adult children.
Anticipatory grief is a real thing during a GBM journey and its so hard to process. Take each step as it comes. It might not feel like it just now but you will get through this. If there is anything I can do to help support you please just ask. Also remember that the helpline is there for you too,
You're not alone. We've got you.
For now though I am sending you a huge virtual hug and lots of strength
love n hugs
Wee Me xx
Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm
