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
So sorry to hear about your husband. I had significant brain odema and I have a large inoperable tumour. I had changes to my colour vision (everything seemed darker or through a filter) and I kept bumping into things on the left plus I get flashing lights sometimes in the top left of my vision. I asked for a referral to our local eye hospital and they did various investigations and found that I had left superior quadrantopia in both eyes.
Thank you for your reply. I will ask for a referral for him but its a bit difficult getting him anywhere now. Will have to try hospital transport!
Sorry to hear this, you might want to think about whether it’s worth the challenges of getting him to the hospital as there is nothing they can do about this condition. I’m not allowed to drive. On a positive note, my symptoms have improved considerably and I feel that my vision has got better now that the odema has gone.
Hello Lolo and Steve
My husband had GBM and he fought for close to 2 years before losing the battle in March ‘24. Towards October last year he had vision problem and at that time I did manage to take him to optician. He was mobile at that time with support. Opticians could help a bit but they clearly said his tumour was invading his optic nerve and they did their best. He was given 2 pair of glasses- one for reading and one for TV etc. TBH reading one was hardly used as by then his cognitive skills had declined and he wasn’t able to read much. He did use the other pair but I am not sure how much it helped him as we realised that slowly he lost his peripheral vision and he wasn’t able to articulate or tell us if he could see properly. He didn’t lose his vision completely as he recognised people in front of him almost till the first week of March.
Take care of yourself. It’s a tough journey. Sending you love and positive energy
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
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