On the 21st December 2023 my dad was diagnosed with a brain tumour at the age of 61, we later found out after the Christmas rush that it was grade 4 and ‘aggressive’. My dad was operated on in the 3rd week of January and about a month ago finished his 6 weeks of radiotherapy and tablet chemo. My dad was at home for the first 4(ish) weeks of his treatment but with limited mobility. He then fell and ended up in hospital for a month. He finished his treatment whilst in hospital. He came home last week but has no mobility, poor speech and sight. Whilst in hospital we also found out that part of the tumour has broken off and dropped into his spinal fluid (told this is extremely rare!?). We thought once treatment ended, he would get some strength back and be able to live more of a ‘normal’ life. However, my dad is currently bed bound, cannot do anything for himself. Has anyone else or your family experienced symptoms like my dad? I am very worried that he won’t get any quality of life back and this is ‘it’.
Hi Luanne92 and a very warm welcome to the online community which I hope you'll find is both an informative and supportive place to be.
It sounds like you and your dad are going through a very difficult time and it's natural to worry that he won't improve.
I'm not a member of this forum but I noticed that your post hadn't had any replies yet. Responding to you will 'bump' it back to the top of the discussion list again.While you're waiting for replies, it would be great if you could put something about your dad's diagnosis and treatment to date into your profile as it really helps others when replying to you and also when looking for someone on a similar pathway. It also means that you don't have to keep repeating yourself. To do this click on your username and then select 'Profile'. You can amend it at any time and if you're not sure what to write you can take a look at mine by clicking on my username.
"Never regret a day in your life, good days give you happiness, bad days give you experience"
Hi,
I might not be able to answer your queries but wanted to offer support and send you my thoughts. My dad has been on a very similar journey. An ‘episode’ in early December with a long wait over Chris
as to be seen by his GP followed by referral scans and tests which culminated in a neurosurgical biopsy after which it was confirmed he had a grade 4 GBM. Mask fitting and then 6 weeks of radio but decision taken not to give him chemo. I am in the hospital at the moment waiting to see the consultant as he was admitted last week after a fall (he has no recollection of the fall) leading to bruisg on his ribs and pneumonia. The deterioration since around week two of radiotherapy has been absolutely shocking and seems to worsen day to day. We have no idea what the tumour is going though as ty have said they would not comment u til further scans are done 3 months post radio but honestly I’m not even sure if he will still be here then
all I can say is that if you would like to talk to someone going through the same hell day to day then please do, I feel like I am on a rollercoaster and can’t get off, the most devastating few months of our lives xx
Hi Luanne
a warm welcome to the online community. So sorry to hear about all that you, your family and your dad have been going through.
Sadly with brain tumours there are no hard and fast guarantees but remember he has been through a major op plus the gruelling 6 weeks f treatment. The radiotherapy keeps working on the body long after the sessions are complete. In my late husband's case, it took over a month for his energy levels to return after completing his 6 weeks of treatment. These tumours impact everyone differently so the people best placed to advise you on what if any recovery you can expect are his own medical team. I would strongly suggest that you speak to them to seek their opinion on what you can expect over the coming weeks/months.
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 positive energy.
love n hugs
Wee Me xx
Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm
