I'm really sorry about your dad's decline daddysgirl. I can't begin to imagine how scary this must be for you right now but I hope our member's experiences of the latter stages of glioblastoma on this discussion will help you to prepare for what's to come and help you feel less alone on this journey.

We have some general information about the last few weeks and days on our website as well.

Best wishes to you both, 

Steph, Cancer Chat Moderator

Hi, I lost my mum last year to the same disease. Its so hard to deal with as the hospital, doctors etc can't answer the questions we have. I begged them to tell me how I would know that mums health was declining but they just said that I'd know! I didn't ,she was given a prognosis of 12 months but died 9 weeks later. Nothing could of prepared us for her death, she was only 67.My only advise is to make the most of every minute and make sure you say what you want to say. Life can change for any of us in the blink of an eye and to have no regrets after the death of my mum was the only comfort I had in an incredibly dark time. Being realistic is the best way forward, take each day as it comes.

Xx

Thank you for your reply.

We’ve been told today that Dad is not strong enough for any radiotherapy or chemotherapy so going forward treatment will only be palliative.

Steroids have stopped and this has brought his heart rate down. Sometimes he comes back and can talk but most of the time he is sleeping.

what does palliative actually mean? He is still in hospital. 

Does this mean they will stop looking after him.

to be honest I’m terrified. He’s my best friend and I’d do anything to protect him. He’s not in pain but last time he was given bad news it hurt so much to see him cry. 

Doctor told him news today but I’m not sure he understood. 

I do not have a good relationship with my mum. She shows no emotion at all.

any advice would be really aporeciated

thank you x

Hi, my mums palliative care was from Macmillan nurses who ensured she was comfortable and pain free when treatment was no longer an option. She was also under palliative care in the hospice, it's end of life care but doesn't mean the end is imminent.

My dad didn't show any emotion through mums illness and it was incredibly difficult. 

I know how you are feeling, the pain is the worst plus not knowing what will happen or when. We were lucky to have a hospice place where mum was referred to for symptom control but within a few weeks she deteriated. It's scary how quick things can change. Palliative care in the hospice gave mum the dignity she deserved in her last weeks.Dont worry about not coping, it's impossible to, just take each day as it comes.I had no idea mum would die on the day I was with her which made me see that I couldn't prepare for it and it was never going to be easy.

Please keep in touch, message me any time. xx

Thank you Lily, 

We saw Dad today. He has no memory of being told yesterday. He was so awake and seemed happier than he’s been in a while today. I couldn’t bring myself to mention what’s happening.

I don’t know what to do for the best. Today he was saying ‘In a few weeks when I feel better......’ I just went along with it.

Is this the right thing to do? 

So exhausted and confused and sad all at once 

Karen x

Hi, we had the same thing happen when mum would forget how long her prognosis was etc. We just left it as we didn't want to have to keep telling her for her to be upset over and over then forget again. We did have a little book that we would write things down in quite early on so we knew exactly what her wishes were. It was hard at the time but a comfort knowing the time we had left was for us to be with her and that everything was in place for when the time came.. Things can change so quick with Glioblastoma, just try to take each day as it comes, talk about anything you feel you want to and if you get a chance , laugh. We had an incredibly desperate time with mum but between the tears and trauma we did, at times, have  moments of laughter and happiness as odd as it sounds and those are the bits that keep us going, even now.

Xx