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Life-limiting illness

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Original poster

Gbm grade 4

19 replies

Nat2345 · 03/12/2019 12:46

My beautiful mum was diagnosed with a glioblastoma multiforme grade 4 brain Tumor in June this year, she had a bebulk operation, two weeks of radiotherapy and is currently on her third cycle of Temodar chemotherapy, she is 66 and seems more confused now as ever she is very repetitive with what she says and forgets something she told me five minutes ago. Any one in a similar situation? Thanks

OP posts:

Minxmumma · 03/12/2019 15:43

Sorry no advice but didn't want to read and run
Gentle hugs and

Original poster

Nat2345 · 04/12/2019 05:45

Thanks so much it means a lot just to know someone has taken to time to read and reply thanks again x

OP posts:

Yurtle · 04/12/2019 05:51

Another one who didn’t want to read and not respond. GBM is horrible. for you and your mum. Is there any support available from the hospital e.g. Macmillan nurses?

dinodiva · 09/12/2019 06:08

I’m so sorry. I lost my mum to GBM in October, diagnosed in July. She never got as far as treatment. It’s a horrible, shitty disease.

She did get very forgetful - she couldn’t seem to retain new information but everything pre illness was still there.

PrettyPurse · 09/12/2019 06:25

My Dad died of it 7 years ago.

He was misdiagnosed at first unfortunately so he could only have radiotherapy for symptom management.

Thinking of you

PrettyPurse · 09/12/2019 06:27

My Dad would replace words with non-words. Whilst he was still mobile he reminded me when walking of a patient with Parkinson's disease, when they get "stuck" when walking.....and then suddenly can go again

PrettyPurse · 09/12/2019 06:40

My Dad died in the January so was ill this time if year too.

At this stage he was still eating and drinking but used a wheelchair for mobility. He was still cognitively sound and we celebrated Christmas early.

He was still "him" at this stage but due to steroids had put on loads of weight and was eating loads - much to my Mum's bemusement as he was never a big eater!

Original poster

Nat2345 · 09/12/2019 08:02

Thanks so much for everyone’s replies I’m overwhelmed by the support here.
Last few days mum has become so not interested in the world around her just sits in her reclining chair all day only moving to potter to the toilet ( she uses a frame and has to have someone behind her at all times as she panicks about falling over), she won’t go out anywhere and becomes quite aggressive and agitated at myself and my dad. She has a doctors appointment today to check her sodium levels are still stable but her and my dad go over there and put on a show like everything’s perfect at home ( when it certainly isn’t) they refuse any help from outside people and the physio have discharged her as every time they go she screams shouts and refuses to participate in anything they do! Feel so lost right now I have no idea signs of decline or anything if anyone can give me some signs to look for I would be so grateful.
I’m so sorry to hear so many of you that replied have lost loved ones due to this beast illness xx

OP posts:

ElspethFlashman · 09/12/2019 08:07

Well everything you are describing is a sign of decline I'm afraid. It may mean the tumour is getting larger and taking over some of her cognitive abilities.

Is she on Dexomethasone? It's a steroid that tries to keep the inflammation in the brain at bay.

Since she is Stage 4 and GBM, I imagine the doctor will not be fooled that everything is OK, as it's a rapidly progressive illness.

ElspethFlashman · 09/12/2019 08:08

I will also add that spaciness and lack of interest in surroundings is a typical sign of advancement. That's how my Dad was.

Original poster

Nat2345 · 09/12/2019 08:16

Thanks so much for your reply and your insight, she is on 8mg daily or the steroid you have mentioned and sometimes refuses to take it and really screams and shouts for hours then decides she wants it, her body clock is also so so mixed up she sleeps all day then has my dad awake all night constantly asking for the toilet even if she don’t want to go, her eating still seems ok she still has her three meals a day but only eats half of what’s there but that’s been going on for about a month now. This week she has reduced her fluid intake and probably only has three drinks a day and sometimes don’t drink all of them.
I’m hoping the doctors can see through it, it’s such an awful time as my dad believes she is moreless cured so convinced my mum the same thing. She’s constantly telling me this past week she don’t have much time left and feels it’s her time. It’s so sad as I feel I lost my mum in June when all of this started she is no where near the person she was it’s such a shame! If you don’t mind me asking how long did you dad have left once he started displaying these symptoms ?

OP posts:

PrettyPurse · 09/12/2019 10:41

My dad died 14th January. So at this stage he was still eating, drinking and able to hold conversations appropriately

PrettyPurse · 09/12/2019 10:45

Just checked FB... 31st December he was eating and drinking but not mobilising. Was replacing words with non-words and slurring at times

Original poster

Nat2345 · 09/12/2019 11:28

It’s all such hard work and very confusing as my mum seems to be displaying what the physio discribed as challenging behaviour it’s hard to tell sometimes. Been up there this morning to help my dad get her ready for the hospital and she was back to her normal cheery self and made my dad promise he wouldn’t tell the doctors she is struggling. Grrr wish he would understand that he isn’t helping her by lying to the professionals!

OP posts:

ElspethFlashman · 09/12/2019 19:36

Well my Dad was quite quick from diagnosis, I'm afraid. We were diagnosed at a much later stage that your Mum. Op & Chemo & Radiotherapy was impossible. Treatment was only the Dex (which was brilliant in fairness). It was just too late.

So I wouldn't like to compare him to anyone else as he was so quick. It's not really representative.

Original poster

Nat2345 · 10/12/2019 08:11

No I agree but thanks for your insight it does help, update from my end mum went to consultant yesterday dad told them she sleeps all night ( she’s wandering the bungalow all night) and says she does everything still herself ( she can’t do anything even wash properly) so he’s prescribing the fourth round of chemotherapy next week for them just hoping she remains as stable as possible for Christmas

OP posts:

Cherrycee · 24/12/2019 22:56

Hi OP, my mum is in the same position although she was only diagnosed last week and had surgery today. It was borderline whether she'd be well enough to have treatment due to her age and other medical issues, but it's happening. All it does is buy time though. It's a huge shock and we're still taking it in. Mum doesn't really understand how bad it is and thinks she'll beat it.

Hope you're doing ok, look after yourself. Christmas is very tough when you're going through this.

concernedforthefuture · 24/12/2019 23:46

So sorry for all of you going through this. My DDad was diagnosed with GBM4 earlier this year in his early 60s, and sadly died two months ago. It's a horrid disease. On reflection, I'm glad for him that it was relatively quick and he didn't have to suffer for months on end, but I don't think I've really come to terms with it all; it just doesn't seem real. Last Christmas we had no idea.

Original poster

Nat2345 · 26/12/2019 06:05

Concerned for the future- I’m so so sorry to hear about your dad it truly is a devastating type of cancer it plays havoc and don’t give anyone notice before it comes to turn all our lives upside down be kind to yourself xx

Cherryce im so Sorry to also hear this brutal brain cancer has got to your mum how is she recovering from her operation? Well I hope, what treatment is she going to be able to have?
My mum is still with us after all the downs she seems to of picked right up again and is due to start her fourth lot of chemo today she’s back at the doctors next Thursday for more blood tests.
We had a lovely day yesterday we had mum and dad down our house for dinner and we truly made it special. Heartbreaking to try and take in the fact that would probably be the last Christmas with mum around. Xx

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