I’m so sorry, my dad was diagnosed with stage 4 GBM in March and is no longer with us. He passed away in July. It’s a hideous disease with little or no treatment - only 1% survive. 

We tried radiation to shrink the tumour but didn’t make it to the chemo stage - both were just a brief extension of his life. 

I truly hope your partner is in the 1% club 

My partner has been stable for the past 2 months and on Friday was diagnosed 4 months ago, hasn’t had no treatment, which is why I think it’s wrong diagnosis just need to get the doctors to listen to me 

I’ve got my fingers crossed for you. TBH we pushed so hard for treatment even if it was a last throw of the dice for my dad. 

I am so sorry to hear about your Dad, I am pushing for more tests and treatment, seeing a neurosurgeon on Wednesday and I am very anxious as i don’t want to be fobbed off like last time. 

I was told the treatment would make his quality of life worse

Fobbed off is the words I was looking for I’m awake all night with him at the moment terrified he will fall out the bed, it’s a hospital bed but no side rail he try’s to swing his legs out but wouldn’t be able to stand as too weak in the legs out of hours nurses just don’t want to know, but if he falls then a 999 Ambulance tied up.

Did the NHS not arrange an occupational health visit? We got the works, bed with rails, kommode, sara steady for getting from A to B, recliner chair, wheelchair etc…I would certainly push for a visit if not? 

Did the NHS not arrange an occupational health visit? We got the works, bed with rails, kommode, sara steady for getting from A to B, recliner chair, wheelchair etc…I would certainly push for a visit if not? 

Hi Chris our home is like a mobility shop trail and error I suppose to see what we need now a hoist coming tomorrow will have to work out exactly what we need and send the rest back we did ask for a recliner chair but by all accounts they don’t provide them.

Pleased you’re getting / got sorted, it certainly makes things that little bit easier for everyone. The one thing I didn’t enjoy was the 3/4 carer visits per day as it felt like my parents home wasn’t their own anymore if that makes any sense? 

We got a good recliner chair for my dad via the NHS but maybe it depends on where you live? They actually bought it for his needs which the view someone else could use it someday.