Hi
New to this group, and am really struggling.
My husband suffered a large seizure in December , CT and MRI scans followed, and was thought to have meningitis or encephalitis. On 20 Feb he was told he had a grade 4 glioblastoma.
The neurologist told us it was incurable and inoperable and without treatment he had between 3-4 months to live. The oncologist said that it had spread to so much of his brain that the radiotherapy would have to cover his whole brain and would be extremely toxic leaving him bedbound and in pain. My husband has opted for quality of life and is now under the care of the local palliative care team who are absolutely wonderful.
I have given up work to care for him and I watch him deteriorating; so much medication, mobility issues, personality changes, so many changes. He cannot be left on his own as his seizures are not under control. Our sons do come and stay when their work allows but I feel so lonely and cut off. I get terrible feelings of anxiety, and although I stay positive and smiley when he is there, when I am on my own I lose my breath and often just want to cry.
I feel that I am just waiting for him to die which I find very upsetting as he is my world.
Has anyone else experienced this?
