Sad Son of a loving Young Mother (Stage 4 Glioblastoma)

Hi, I'm going through this with my mam to, it's horrendous she was only diagnosed in December has gone down hill so quickly, I've had to take a little break from seeing her, as it's really effecting me. 

It's been a whirlwind of a few months I can't totally understand where you are coming from, trying to process what's happening etc... 

My mam just isn't sleeping at all. Spoke to the palliative nurse this morning as I'm so anxious to go and see her, because the way the tumor is making her react, it's breaking my heart, she's just going in today, I'm also worried in case she kicks off because I'm not there. Everything is going through my mind today. 

Is your mam in a hospice or at home? Does she have a palliative care nurse? 

I really sympathize with you, it's one horrendous disease 

Hi, Thanks for your reply.

My mom is in Hospice. In Norway we have it's own place for something called "Lindrende avdeling" Which focuses on patients having it as well is they can, When it comes to both pain and symptoms.So i suppose that means "Palliative"

Fortunately, this is located only 5 minutes from where i live, so it makes it very easy to visit her multiple times each day.

The nurses she has are great, they are very caring and checks on her every 20 minutes if not more.

My mother is only 53 years old, which makes it extra hard for my brothers, where the youngest are 10 and 12.

Since my mother cannot speak anymore, i am not aware of any "Personal" changes, other than she has always been a caring woman, and she does still stroke me on my arm and face, which shows her caring personally still fortunately. 

But some days she could not care less about who are there, and she will focus on other unrelated things.

So everyday is totally different unfortunately.

I'm so sorry she's very young! Life is so unfair, I can't imagine how you are coping. 

Can relate to every day being different, it's the same for me, as time goes on it certainly does get harder. My mam gets so agitated and very angry I know there not her, but it really hurts. 

My mam was giving 2 months, everyone is different with this disease. It's hard to see someone you love go through this, unfortunately there isn't a manual to what we need to know, it's taking one day at a time. 

It's bloody awful. It's also so draining on the ones who are watching them deteriorating. 

Sending hugs 

Sad to hear that your mother is agitated and angry, i do not think i would handle that well.

But as you say, it is not her, it's the tumor...

My mom was given 7-8 months WITH treatment, since this stopped working, They were talking weeks.... This was in early November however.

Even the doctors in hospice is surprised how long it has taken, So it seems she is very strong at will still <3

I hope everything turns out as peaceful as it can get for you as well, thanks for sharing your experience again.

She had surgery on 10th December to remove some tumor then results on 27 which was when we were told she wasn't medically fit for treatment. 

It's really hard when she screams and shouts at me, I know it's not her. 

Same to you, anytime for a vent we are all here to support one another, vent away. It does make you feel better. 

Take care 

SadMonkey, I’ve just read about your mother and I’m so sad for you. It’s hit home as I’ll be 53 in a few days, and am managing with a grade 4 astrocytoma. I don’t have children so I can’t imagine what you are all going through - I didn’t realise you were so young. The poor little ones..

my dad died of a glioblastoma 10 years ago and he had 6 months between diagnosis and his death. But we felt like we lost him quite early on, so it did feel more like waiting for the last few weeks. I remember him sleeping a lot too, especially as he neared the end. And the Marie Curie and Macmillan nurses were amazing

i wish I could hug you all, but I’m sending love xxx

HI sadmonkey

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

I supported my late husband G through the 3 years of his glioblastoma journey. He was 54 when he passed away. Sadly a glioblastoma journey steals the person from you piece by piece. There are no hard and fast guidelines with timescales as everyone is unique. G was initially told 12-15 months with treatment in Sept 2020. At the end of Feb 2023 we were told a few days maybe a couple of weeks. In the middle of August we were again told a few days. He was physically very fit and being relatively young, his body was physically strong from the neck down. G eventually passed peacefully at the end of Oct 2023.

Hard as it is, this journey will take as long as it takes.

This is a safe and supportive space as you've already seen so please reach out anytime. There's always someone about to listen who gets it, someone to hold your hand and to offer a virtual hug when its needed. You're not alone. We've got you.

For now though I'm sending you a huge virtual hug and lots of strength.

love n hugs

Wee Me xxx