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Original poster

My dad and Glioblastoma

57 replies

Devastateddaughter · 04/06/2023 20:30

My dad has been diagnosed with an aggressive brain tumour, there is no treatment, so it's just palliative care.
He is old but a few weeks ago he was driving and playing golf, we are all absolutely devastated and despite his amazing ability to still make jokes, I know he's frightened. I can't stand the thought of him declining or being in pain, I can't bear the thought of him not being here anymore. He's already forgetting words and names .
He's been the most amazing dad .

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Fannieannie63 · 04/06/2023 20:38

I really feel for you I have no words except I feel for you. I lost my Dad to dementia he was the best. My advice is to spend time with him, talk and laugh that’s what I did . Much love I’ll keep you in my thoughts xxxxx

Figment1982 · 04/06/2023 20:40

I’m so sorry to hear this OP, my mother died from a gliosarcoma 12 years ago. Same situation: no treatment available. Happy to share my experience although none of it was positive, but I appreciate all tumours are different. I do remember that at no point was my mother in pain.

Original poster
Devastateddaughter · 04/06/2023 20:47

Thank you, it sounds daft but it's come as such a shock. He's home now but it's so difficult as my mum had a stroke a few years ago which changed her personality, she suffers from extreme anxiety, if I go round I'm not allowed to use the oven and she can't be left alone, even if I go to the loo she panics. She's also not very mobile and dad used to look after her. They have carers now but they stress my mum out.
The palliative care team are hopefully visiting this week, although it makes it more real , I hope they can help.
I know dad will decline quite quickly and he may have seizures which mum will never cope with.

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Original poster
Devastateddaughter · 04/06/2023 20:54

@Figment1982 was your mother able to stay at home?

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Figment1982 · 04/06/2023 20:56

I’m sorry, the situation with your mother sounds like an additional stress at an already horrendous time. I know what you mean about the shock, it felt like an out of body experience. The palliative team will be a great help I’m sure.

WorriedMillie · 04/06/2023 20:59

Hi OP, I’m so sorry you are going through this, if you’d like some emotional (including counselling) and practical support (also for your family and your Dad), I can recommend www.braintumoursupport.co.uk
They’re great and will be there for you for as long as needed ❤️

Welcome to Brain Tumour Support | United Kingdom

Homepage for Brain Tumour Support, the brain tumour charity dedicated to supporting patients, families, friends and carers. Founded in 2003 under the name of Hammer Out, it pioneered and continues to lead the way in delivering specialist support to any...

http://www.braintumoursupport.co.uk

SensitiveB · 04/06/2023 20:59

Hi I am So sorry to hear about your dad . It is really hard, and I would say make the most of the time you can be together .
my mother in law was wonderful and so sadly had this too. It is a really hard thing and my heart goes out to you and your dad

Original poster
Devastateddaughter · 04/06/2023 21:00

Thank you for the link @WorriedMillie

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Original poster
Devastateddaughter · 04/06/2023 21:03

He has done every crossword in the newspapers for as long as I can remember, I looked at one he was trying to do the other day and he can't write properly and none of his answers were even words, just a load of letters, it broke my heart.

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Figment1982 · 04/06/2023 21:05

Yes my mother was at home, and she was incredibly immobile.

She had about 3 weeks in hospital and then 3 weeks in a hospice. She had a seizure at the start of the hospital stay which rendered her completely immobile from the neck down. Couldn’t move anything, not even her fingers. This was all due to the site of the tumour, I don’t think this is a common issue…

She was sent to the hospice as the hospital deemed her too unwell to be at home. However once we got to the hospice and my mum continued to insist that she wanted to be at home, the hospice agreed it was entirely possible with the right package in place. They worked with the local authority and arranged for a hospital bed to be put in our living room, and she had a syringe driver for anti seizure and anti sickness medicine. We had carers coming in 4 times a day. We also had Marie Curie nurses coming in overnight a few times. It was all perfectly possible even though mum was as sick as could be.

I am not a medical professional so I don’t know if we were “lucky” with how that worked out, but if the patient has expressed a wish to be at home I don’t see why it’s not possible unless it will cause the patient unnecessary pain and distress.

Original poster
Devastateddaughter · 04/06/2023 21:09

Dad has a hospital bed in the lounge, they have given us pre-filled syringes in case he has a seizure but mum just ignores us if we try and explain what she has to do. I said I'd move in with them but they've said there's no need .

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YoSof · 04/06/2023 21:11

I’m so sorry you’re going through this, I’m going through the same with a family member and it’s just devastating.

With regards to your mum and whether she’s coping or able to help your dad with medication, it might be worth talking to the adult social care team and asking for support from them too. Sending love x

Original poster
Devastateddaughter · 04/06/2023 21:16

I'm so sorry for those that have been or are going through this, it's horrendous. My dad has always been so strong , he broke both of his wrists a few years ago and took himself to hospital on the bus , as he didn't want to bother us , To see him in a wheelchair and struggling to find his words is heartbreaking.

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Mariposista · 04/06/2023 21:32

So so sorry OP.
I have just lost my beloved gran after having her on EOL care at home. Similar to you, wee had a hospital bed, syringes with powerful drugs and the palliative care nurses coming several times a day. It is tough, so so tough.
Take care of yourselves. Remember that hearing is often the last thing to go, so talk to your dad as much as you can. He will be comforted knowing you are there. What a horrible situation. Wishing you the very very best.

Original poster
Devastateddaughter · 04/06/2023 21:43

Thank you, I'm so scared, we don't know what to expect, he has lost the sight in one eye, which is how it all started and is struggling to remember words, we don't know how long he has left.

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lieselotte · 06/06/2023 11:54

Hi OP very sorry to hear this. Have you heard of Laura Nuttall? She was a young lady who died of this same type of brain tumour two weeks ago. Her mother tweets as shitscaredmum and has a website with various resources which may be helpful. I see that one poster has already pointed you to the Brain Tumour Support charity. There are also others.

It's a terrible cancer with very few treatment options, although Laura lived for 4.5 years after her diagnosis.

Timeforabiscuit · 06/06/2023 12:07

Hi @Devastateddaughter - my dh has glioblastoma, and I know the decline can be very rapid.

For communication, try and give him lots of time, with dh left was right, head was foot, so it was a real challenge. We did have a tin can painted one end red, the other green, so we could see if he was feeling good or aggravated, this helped when he lost his words. Don't try and interrupt or speak for him unless he asks for a word, they can lose the thought in their head and get very frustrated.

Playing music helped, or sport match commentary, audio books as well were a good distraction.

Hand hold from me, this is not an illness you recover from and there is a certain amount of solidity in the inevitable, and you're making the best of an impossible situation.

Original poster
Devastateddaughter · 06/06/2023 18:39

@Timeforabiscuit I'm so sorry about your husband, it's awful . X

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Original poster
Devastateddaughter · 11/06/2023 22:02

I saw dad yesterday and I can see even more of a decline. My mum is in a terrible state and phoned my sister late last night because she was hot !

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CheeseTouch · 11/06/2023 23:14

I am sorry to hear about your Dad. 💐 My brother has this too. He’s had surgery and just started treatment. So we are early on the journey and trying to come to terms with it.

Original poster
Devastateddaughter · 12/06/2023 07:07

@CheeseTouch Im so sorry for your brother and your family, I hope his treatment goes well xx

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CheeseTouch · 12/06/2023 08:45

Thank you @Devastateddaughter - happy to dip in on here every so often to check in Xx

YoSof · 12/06/2023 08:55

Im so sorry to hear your dad is declining. Have you had any support from adult services with your mum?

I’m so sorry your going through this.

My stepmum is into week 3 of 6 of her treatment, radio and chemo. Her seizures have increased so they’ve upped her treatment for those. They will rescan her four weeks after treatment to see if it’s helped, feels like we’re desperately trying to cling to hope where there is none. Cancer is a bastard, but this type takes the absolute biscuit

Original poster
Devastateddaughter · 12/06/2023 09:44

The situation with my mum is so hard to explain, she has full capacity but the anxiety she suffers with is off the scale, she is in a constant state of panic. I don't know what can be done to help her. As a family we now have a rota for us to stay with them, some of the carers are good but others are totally useless. Dad is faecally incontinent and one carer didn't change his bed.
@YoSof I so feel for you all x

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Original poster
Devastateddaughter · 12/06/2023 12:51

@YoSof is your mil at home? We're so worried that my mum won't cope with seizures.

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