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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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YoSof · 12/06/2023 12:53

Yes she’s at home, other than loss of feeling in her right hand and the seizures she looks the picture of health.

The anti seizure meds seem to be working, but make her feel really groggy and tired.

I’m so sorry you’re having to deal with all the extra strain on top of the devastating diagnosis, there aren’t really any words for how fucking cruel it is x

Original poster
Devastateddaughter · 12/06/2023 18:31

Just made a complete idiot of myself in the supermarket trying to buy a Father's Day card, I thought I had it together but it hit me and I couldn't stop crying.

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YoSof · 12/06/2023 20:45

Devastateddaughter · 12/06/2023 18:31

Just made a complete idiot of myself in the supermarket trying to buy a Father's Day card, I thought I had it together but it hit me and I couldn't stop crying.

This is so sad, I wish I could give you a hug.

Do you have people looking after you while you’re trying to look after everyone else? X

Original poster
Devastateddaughter · 12/06/2023 20:47

I'm single but I do have my daughter, sister and her husband .

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Timeforabiscuit · 12/06/2023 22:03

Don't worry about the spontaneous crying, really don't, the grief and stress of it all catches you out at the strangest times.

CheeseTouch · 12/06/2023 23:00

💐 Glad you have some real life support xx

Original poster
Devastateddaughter · 13/06/2023 12:02

mum woke up this morning to find dad on the floor, luckily the carer arrived and got him up. I arrived just after and he tried to get to the loo , which he could do yesterday and half fell again, I managed to catch him but at 6ft + and 17 stone it wasn't easy.
Palliative nurse is coming today and will up his steroids.

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Original poster
Devastateddaughter · 14/06/2023 22:27

Dad is now bed bound, it's just not safe to try and stand him up as he can't weight bear now, he is declining daily. We are having real trouble getting help from the incontinence team, it's added so much stress to an already horrendous situation . He is sleeping most of the day and can't make himself understood at all . I can't believe how quickly this is happening.

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YoSof · 14/06/2023 22:42

I’m so, so sorry to read your update. I know decline can be incredibly quick with glioblastoma, it’s so fucking cruel and traumatic. We are still here and listening x

BurntOutGirl · 14/06/2023 22:50

So sorry 😞. My dad died of GBM. He was bed bound 3 weeks before he died. Pretty much unconcious for the last week.

tigergoat · 14/06/2023 22:58

I am so sorry you're all going through this. I went through the same with my dad 4 years ago. It's a fast decline, I know. The only thing I can say is to be there with him and talk to him and comfort him. The knowledge that you did that will then comfort you, in my experience xx

Original poster
Devastateddaughter · 15/06/2023 06:38

Thank you xx I can't stand that he's lost all dignity, having to literally haul him out of his chair onto the bed was traumatic, watching him trying to talk and just a jumble of words come out so we don't know what he's asking for is awful, what if he's trying to say he's in pain and we don't do anything because we can't understand him?

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Original poster
Devastateddaughter · 15/06/2023 07:48

I've just been in to see him, his sheets are soaked with urine , despite all the pads he's wearing, we have asked for him to have a catheter fitted but just can't get through to the incontinence team. I feel like screaming.

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YoSof · 15/06/2023 09:25

Does he have a specialist nurse you can call?

BellaVita · 15/06/2023 09:37

@Devastateddaughter am so so sorry to read about your lovely dad.

My son (26) was diagnosed with a Glioblastoma a year ago this month after a totally out of the blue seizure. It feels like we are living with a daily ticking time bomb.

Sending all my love to you xx

Original poster
Devastateddaughter · 15/06/2023 10:44

I'm so sorry too@BellaVita sending you love. My dad's steroids were increased yesterday and it's made a big difference, he can speak in short sentences today, he still can't find all the words but we are managing to sort of understand him.

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Original poster
Devastateddaughter · 15/06/2023 10:58

@YoSof we do have a palliative care nurse who gave us the number for the continence team, called them and they gave us the number for the rapid response team who said it's nothing to do with them. Called the continence team back who gave us another number for the district nurses who gave us the number of the continence team. It's a bloody farce.

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Original poster
Devastateddaughter · 17/06/2023 12:07

Thank you @BurntOutGirl , I ordered a couple of external type catheters from Amazon including a Convene one that you suggested , but due to his anatomy they didn't work. Plus it was so undignified for dad to have his daughter trying to fit them.
Finally , late yesterday , a district nurse came out, saw us holding the bloody pint glass for dad to wee in (honestly it was the only thing that we could get to work due to 'anatomy ') and fitted a proper catheter. The relief on his face !
I'm grateful for the suggestion though x

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drivinmecrazy · 17/06/2023 12:15

I'm so sorry you're going through this OP.
I have no words of wisdom I can give, but I will say in my Dads final weeks the District Nursing team were so unbelievably fantastic that I can't find the words.
They were a source of so much strength and comfort to my father and us.
They were truly angels.
Wishing you love and strength X

Bobbybobbins · 17/06/2023 12:40

So sorry OP. My DM died at home in the summer and her last week was very undignified in some ways with personal care but also what she wanted in terms of being at home with her family. Sounds like you are doing an amazing job. It is very tough caring for a parent but shows your love and strength.

mintbiscuit · 17/06/2023 12:42

I lost my mum to this 3 years ago. After being admitted to hospital with seizures we lost her 3 months later. The worse bit for me was not being able to communicate properly in that time. The tumour had impacted on the parts of her brain which controlled speech. Nothing made sense. I spent a lot of time just sitting and talking at her! I also created photo albums for her to look at.

I know this sounds awful but in her final days I reassured her that my brother and I would be fine and that it was ok for her to go. I was relieved (but still devastated) when she finally passed because she was hadn’t been ‘with’ us for a while, if that makes sense. She was a shell of what she once was and had no quality of life.

My heart goes out to you OP and the others on this thread that are/have been impacted by this cruel disease.

YoSof · 17/06/2023 20:39

I’m so sorry for the loss of your mum @mintbiscuit

I think I’ve been kidding myself and holding on to hope because my stepmum looks so well and there have been no “major” symptoms. Her seizures have increased so she’s now on steroids, and today she got confused over which tablets she had to take. I have read so many times that the decline is usually rapid, so her looking so well means nothing does it? I know what’s coming and I don’t think any of us are ready for it. I want to scream about how cruel and unfair this disease is, even writing the above has made me cry

Highdaysandholidays1 · 17/06/2023 20:48

Could going into a hospice be an option? I breathed a sigh of relief when my relative went into one for the last few weeks as it was so hard to deal with the incontinence, falling, and general chaos of it all at home. It was so peaceful there and we could stay as long as we liked, also very nice for children to visit. I think there can come a point where that's by far the easier option all round, as they have lots of pairs of hands and experience of managing palliative care. Just an idea to ask about it, our GP was the one who secured the place, they are quite hard to come by but I'm so glad that the final weeks were there and not here.

Original poster
Devastateddaughter · 18/06/2023 09:30

@Highdaysandholidays1 we have asked about this , you're so right, the chaos at home is not at all restful, there are so many people coming and going, trying to get dad in and out of bed is very difficult (although slightly easier now the steroids have been increased and he can weight bear again) , the packs of pads and wipes stashed here and there , filling and emptying bowls of water to wash him , it doesn't sound too bad but it is chaotic.
The palliative care nurse said he's not ready for a hospice so it would have to be a care home and we're not sending him to one of those.
The increase in steroids has been amazing, he can now use his right arm again and is answering crossword questions and he looks so well too . In a way though , while the improvement is great, it's a false hope because we know it won't last.

My heart absolutely goes out to everyone who is suffering or has/had a loved one with this cruel disease, I had no idea before now the awful impact it has. There's something to be said about just going suddenly, my dad is fully aware of everything and I can't bear to see the indignity he is having to endure, he's such a proud man.

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