Hi, I'm new here. Sorry to send such an awful first message but my Dad has High Grade Glioma brain cancer and when we saw the MRI scan it seemed to be everywhere. My Dad was very confused and numb down his right hand side plus very slurry in speech and eventually after many A & E trips they finally found this. Its inoperable but he's been given high does of steroids which have really helped. But he's having them reduced. What we don't know is how long? I know that's a very silly question but after the steroids stop working does any one know if they'll be a rapid decline within days or weeks? Me and my brother plus a friend are doing 24/7 care. I have children and a job so struggling to cope but if its going to be a few short weeks then I will cope but if it could be weeks or months then I'll struggle. I know this sounds so selfish but I want to care for me Dad. I don't really know what i'm looking for as feel the steroids are masking everything. Any advice or experience will be appreciated and hope i don't offend anyone at all. Thanks for reading!
Hey, sending you, your dad and your family so much love and light.
I have posted a few times on here about my dads journey, after an episode that I now know was a type of seizure in December 2023 he was subject to various scans and tests and following tumours being identified from the scans a neurosurgical biopsy to identify the type of tumour. On 28th February 2024 we were told he had a grade 4 glioblastoma.
For him, like your dad, owing to the location of the tumours there was no possibility of debulking and they were glad to have been able to get enough tissue to perform a biopsy without any complications. I do think we saw a significant decline in his cognition from this point onwards though.
My dad was deemed well enough to undergo six weeks of radiotherapy during which time his steroids were increased significantly just to get him over the ‘finish line’. Unfortunately his condition had deteriorated rapidly and four days after radiotherapy ended he was admitted to hospital after a fall (he couldn’t remember falling but had broken ribs). He spent several weeks in hospital where his condition deteriorated at a horrific rate and we were repeatedly reassured by his consultant his condition would improve and this was the after effects of the radiotherapy. Added to this, he contracted covid in hospital and pneumonia as a result of the broken rib. We saw no improvement whatsoever and at times a startling rate of decline physically and cognitively.”. He was transferred from the hospital to a HCC (not sure if this is a Scottish provision only or if they exist elsewhere in the UK) however it is a facility that offers the same type of care as a hospice but patients may have been deemed to have slightly longer to live than hospice requirements and they are not deemed able to be cared for at home (-he could not walk or move himself at all by this point, was incontinent and had lost all concept of where he was). He died at the HCC on 2nd August, only 5 months after diagnosis and despite his consultant oncologist repeatedly assuring us he had 12-18 months to live from diagnosis.
I was directed to a timeline which I found exceptionally useful, it was compiled by medical professionals working in a brain tumour hospice in the states and it charted everything I saw in my dad in terms of his decline. I’m not sure why his consultant stuck so rigidly with the 12-18 month diagnosis, I almost felt like I was being gas lit by them as they repeatedly assured me he would get better and all I saw was daily decline.
if you think it might be helpful I could share the link with you, it is a guide but I found it helped me process the decline I saw in him and prepared me far better than I felt the oncology team did for his death 
Please feel free to message me xxx
