Hi everyone, I'm new here.
My dad was diagnosed with grade 3 anaplastic oligodendroglioma in summer 2018. He had radiotherapy and oral chemo, and because of the genetic signature of the tumour the doctors felt able to make a prognosis of a decade or more - which was kind of 'amazing' in context.
Whilst scans show that the tumour is not growing again (yet), he's experienced a gradual decline in cognitive function, memory and mobility, which has become much less gradual over the past year. It's been quite challenging to get to the bottom of individual things i.e. is his mobility bad because of balance, or pain, or muscle weakness caused by...lack of mobility? He's under the care of a neuropsychology team as well as an oncology team, and the tests they have run suggest that he is experiencing a 'degenerative condition' as well as the brain tumour i.e. dementia, but then their Alzheimer's lumbar puncture didn't show the markers....
It's all come to a head more recently because he collapsed while out - unclear whether he fell or had a seizure - and since then he's been suffering on and off from incontinence, periods of real confusion (but then more lucidity) and is really very wobbly/ slow on his feet. He actually seems generally placid and content, which is a huge blessing, but his days are very mixed. He had some great days over Christmas, meeting his new grandchild, being quite lucid and engaged, chatting to people - and then days/ moments where he presents very much like someone with advanced dementia (needing help with toileting, confusion etc). He's just gone back to hospital yesterday after several weeks there before Christmas.
I suppose what I'm asking is whether it sounds like he is now approaching later stages of the brain tumour and we are moving to a different stage of care - and what sort of things I should be asking, or doing, to try and help. Up to this point it feels a bit like the cancer team aren't involved because the tumour isn't growing, but the neuropsychology team haven't given much insight either. I feel a little like we're continually dealing with GPs or A&E people and not actually getting an overarching view of 'yes, this is a man with advanced brain cancer, and these are things we should be doing next'. And then I guess I just have dark scary questions about what to expect over the coming weeks (months?) whilst also not really knowing who to ask, or how.
I'm sorry if this sounds very rational or cold, it can be my way of dealing with things. It's obviously so upsetting but I want to try and support him and my mum as best I can (whilst also living several hours away).
Hi Sezrah
a warm welcome to the online community. Thank you for sharing your story.
It's so hard to know if the end is approaching when there is so much going on. I supported my late husband through the 3 years of his stage 4 brain tumour journey (Glioblastoma) and I found in the latter stages that asking the doctors direct often quite blunt questions worked for me. Doctors often give guarded answers as there are no hard and fast rules here. In G's case his decline both cognitive and physical was like going down lots of flights of stairs. He would decline then plateau ( having reached the landing) then go down some more then plateau again. The end when it came was fairly swift. He had a stroke/seizure overnight on the Sunday and passed away peacefully the following Friday in our local hospice.
Perhaps ask the medical team what you and your mum should be looking out for and being concerned about eg swallowing issues, more confusion than normal. As for support. be led by what your mum and your dad need and also what you can cope with. Again there are no hard and fast rules here as everyone's situation is unique.
This is a safe and supportive space so please reach out here anytime. There's always someone about to listen who gets it, someone to hold your hand and to offer a virtual hug when its needed. You're not alone. We've got you.
It’s always good to talk so please remember that you can also call the Macmillan Support Services on 0808 808 00 00 - most services are open 8am to 8pm, 7 days a week Clicking here to see what is available. This service provides lots of cancer information, emotional support, benefit and financial guidance or just a listening ear.
For now though I'm sending you a huge virtual hug and lots of strength.
love n hugs
Wee Me xx
Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm
