3 months life expectancy for my dad

HI SArah1984

a warm welcome to the group. So sorry to hear about your dad. Life's too cruel...

I've been supporting my husband through his GBM4 journey since he was diagnosed in Sept 2020. It's a real tough rollercoaster ride. Everyone is unique and these tumours impact people in so  many different ways. There really is no rhyme or reason.

Memory is a weird thing with these tumours I've noticed. Ask my husband about things from 20+ years ago and he's fine. Ask him about something a few minutes ago and forget it...he doesn't know. Pressure changes in the brain can also impact things, as can changes in medication. It might be worth a call to his medical team to explain these changes and get their take on it. 

We are now at the stage where its likely to be weeks/ 3 months and I was advised to report any changes to the oncologist. Things can change in a heartbeat with these tumours. We're not medical experts so I'd err on the side of caution and ask, even though its a positive change you are reporting.

This is a safe and supportive space so please reach out anytime. There's always someone around here who gets it, someone to listen, to hold your hand and to offer that virtual hug when its needed. You're  not alone.

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 I'm sending you a huge virtual hug and positive energy. Stay strong. I totally understand how tough this is.

love n hugs

Wee Me xx

Hi wee me, Thankyou so much for your lovely message, and I’m so sorry to read about your husband. Life is very cruel, I’m sending you all the strength for the coming months.

honestky it’s almost like he’s had dementia since October, and now all of sudden he’s almost back to the man he was before, after being given such awful news he has weeks to a short few months. The only comfort I ever took from his confusion the last few months was that he wasn’t aware of what was happening, I can’t bare the thought of him knowing in his final weeks. It’s so cruel xx

thamkyou again for your reply, I pray it’s comfortable as it can be for your husband. So sorry x 

Sarah1984

So sorry to hear about what your dad is going through - and of course you aswell. This disease is truly horrendous and heartbreaking to witness a loved one suffer with - I won’t go through my story here but by all means look at my profile where I have talked about my wife that sadly passed on 3rd December. What I will say is she did go through a brief period where she seemed much better like your dad, but it only lasted for about a week unfortunately - I don’t want to make you feel any more upset about the situation than you undoubtedly already are but getting other people’s experiences that have been through the same I feel does help in getting as much info as you can. As you mention it does feel like they are suffering with dementia and it is really painful to witness … I really sympathise with what you are going through it is so hard. 

Take care x

Hey Sarah1984...

I'm sorry to read your story.  As others have said, it can be a rollercoaster - none of us who have been on this journey with a loved one will be surprised at changes in personality.

Since they have told you they can offer no further treatment, I hope you already have been referred to your local hospice, but if not, please ask your GP to refer him as soon as possible.  That may sound like something you don't want to do just now (especially if he is apparently doing OK) - but you will likely need their expertise sooner or later, and starting to build the relationship early is really helpful.  They are a mine of information, they can provide a lot of immediate practical and emotional support for you all and they have access into lots of services and are often a quicker route into getting things sorted (modifications or equipment to the home, blue badge for the car, OT referrals).

Obviously no-one can tell you how quickly your dad will progress.  My wife lasted much longer than I thought possible.  It's really tough - but for now all you can do is live day by day.  Things will settle into their own rhythm.  Keep reaching out for help.  And make sure you look after yourself.

Big hugs...

Pete

Hi PGB, I’ve just read your profile about your amazing wife and mum to your two boys. My heart aches for you all, I’m so sorry. No words can make of what you’ve lost and been through any better, life can be so cruel and unfair. Be gentle on yourself and you and your boys keep close. 

thamkyou so much for taking the time to reply to me, I can’t imagine how hard that was when things are so raw, I’m so grateful for your honesty regarding how well my dad seems at the moment, I know it won’t last but it’s so hard to believe he will go downhill so quickly. How life can change so quickly. He’s the most amazing man and dad, I’m so angry this is happening to him. He’s only 62, he loved life, never complained just enjoyed everything. I’ve got three boys who adore their granddad, days are very heavy. We are just trying to make the most of everyday and keeping positive around him. Thankyou again so much for your reply. This forum has been so helpful in understanding how things will go. :-( 

take care X

Hi Pete. Thnakyou so much for your message. I’m so sorry about your wife. I can’t imagine at the moment how painful that’s been for you. We have that all to come, it’s all happened so quickly it’s hard to get my head around it, such a cruel cruel disease. The palliative team are in place now, but for now we are preparing to care for him as home, whilst we can. We have had information about hospice, we are lucky we are a big family so the plan is to keep him at home, this has been his wish when he spoke to the nurse. I guess we just take each day as it comes. 

Thankyou again for your reply, and I’m so sorry for your loss. Look after yourself xx

Hi Sarah

i am recently new to this amazing group of people that share their experiences with loved ones suffering with a GBM. My situation with my Dad is much similar to yours with regards to timelines. You’ve actually given me some hope of normal conversation returning even if only for a very short time. 
it is a very difficult time for all involved, such a horrendous disease. Best wishes x

Hi Nan K, so sorry to read about your dad. Nothing can prepare you can it, it’s heartbreaking and so cruel. I can honestly say he’s almost back to how he was, it’s been months of confused conversations, no emotion and with him only replying with short answers when he’s spoken to, it’s like the spark in his eyes was totally gone. The past week he’s just got better every day, he’s cheerful, remembering everything, conversations feel so normal. Hard to believe this will end so quickly. I hope you get this window of “normal” for a while with your dad, to talk how you used too. Here if you need to talk xxx it’s so so cruel 

Hey Sarah1984,

Sounds like you have the right support in place.  We cared for Fi at home too.  But our palliative care was provided by the local hospice.  So I think we are talking about the same thing.  What I know is that I needed all the help I could get from professionals, friends, neighbours and family who all rallied round.  A wise GP said to me last summer just to accept all the help I was offered.  And that was the best advice I received.  In reality there are times you have to say no (I've said it before... some people just can't cook.) - but in general people want to help, and you are going to need as much support as you can get.

And please keep reaching out here so that we can at least be supporting you as best we can.

Pete