Hello.
I havent been on here in a while. My husband was diagnosed with an agressive grade 4 gliobastoma in May 2023. He was operated on and we have been told that it is incurable. He went through the 6 weeks of radiotherapy and chemo (tablets) ok. Was due to have 4 weeks rest with no treatment before starting on the 6 months of chemo (5 day cycles) but sadly he collapsed after 1 week. He was in hospital August 2023 to Oct 2023. He then had a big seizure in January 2024 and was in hospital for 2 weeks. He has complications from being diabetic which do not help and we are struggling keeping his sugar levels at a reasonable level. He lost a lot of weight during his treatment going from a XL to M but is now back to XL - mainly due to the steroids as he doesn't eat that much now. His mobility has been effected big time and he spends his day either in the hospital bed we have in our living room or the rising recliner. He is unable to walk unaided and we no longer use the zimmer frame as his legs just don't hold him up and he'll sink to the floor. We have a Sara Steady ( basically like a sack barrow with a folding seat!) that we use to move him around. We have been given a big wheelchair that it too big to keep in the house so its in the garage. Its too much work to get him to this on our own so he has only been in it once when friends were visiting and assisted getting him into it so he could sit outside as it was a sunny day.
Now he is complaining that he cannot see - everything is very dark and he keeps asking for the lights to be on when they are on 24/7. He had a period of only being able to see in black and white but can now see colour. He has diabetes and has recently had his annual diabetic eye screening which came back all ok and has had his eyes tested with no change. This loss of sight is new and was wondering if any other people have experienced it? We are due another MRI beginning of August. He has MRI's every 3 months and each one since May 2023 have come back ok - no further growth. The radiotherapy and chemo have done what they are meant to do and have shrunk the tumour.
His left side is effected and he loses feeling in his left foot. But its his eyesight that I'm worried about.
Lorraine
HI Lolo,
My wife had a few visual disturbance throughout her illness. These got a lot worse when the tumour started to come back as it started to impact the optic nerve. Her peripheral vision was very poor and she'd regularly see people that weren't there.
I really hope the scan in August gives you a bit more idea what's going on. It's so hard when these symptoms pop up and you don't know if they are due to the tumour or not.
Sending hugs,
Chris
