I have been diagnosed with a grade 5 Glioblastoma bran tumour and underwent a biopsy in Feb 2024.
My oncology team decided that tumour testing showed my tumour most receptive to radiotherapy so treatment was decided to be super aggressive daily radiotherapy for 3 weeks then review.I have received max radiation do a brain can have so am waiting for 3 weeks then oncologists will review original tumour scans
then post radiotherapy scans to discuss next steps.
Where I’m struggling is what happens now - I have been discharged back to my home- hubby works full time
, & we have 1 23 year old living at home.
My presenting symptom was peripheral sight loss in my left eye picked up when I booked an eye test - this has continued
and increased as a my tumour is occupying my thalamus which decodes my vision images so there are lots of times
that I feel like I’m getting a distorted reality/am I dreaming view/ blurred unrealistic image of the world. I can’t see any
images to the left of me, make sense of what I am seeing, know if what I’m seeing is real or if I’m dreaming yet other times
i can be lucid and the vision makes sense. Does anyone else have /understand this?
Medical staff haven’t said but should I be accompanied/ have a nurse?
My wife saw things out of her left side a lot. Often it was one of the children she thought was standing in the corner.
Have you spoken to your GP about your ongoing care? How are you managing at home day to day?
