My Mom Aged 75 Diagnosed with GBM Stage 4

Hi Ravi,

Welcome to the group and so sorry to hear about your mum. I cared for my wife who had a GBM but she was a fair bit younger than your mum at 49 and managed just over 18 months after surgery.

There's lots of really useful information on the Macmillan site about different aspects of cancer so if you haven't already have a good browse and come back with any questions. I found it really helpful just reading through the threads in this group to see what others' experiences had been like. Although we are all looking after someone with, or suffer from, a GBM we all end up taking slightly different routes depending on how it progresses and local care provision.

When it comes to the practical and emotional challenges of supporting family and friends you may also benefit from joining our Carers only support group where you will connect with others navigating the same support challenges.

Hope some of this is useful and please do use this group to ask questions or just vent how you're feeling.

You're right this disease is unforgiving so do look after yourself because it's unbelievably hard watching a loved one go through this.

Sending love and a hug,

Chris

Hi Ravi,

My mum has also been diagnosed with a Grade 4 glioblastoma. She's had surgery to remove what they could, and she is due to start radiotherapy in the next few weeks.

How are you, and your mum? X

Hi Nikkiw91,

I am very sorry to hear that you mom is diagnosed with GBM Grade 4. It is an unforgiving and ruthless disease.

My mom passed away on the 20th of March 2024. It has been 2 months.
It was a rough time for me and my mom. We had to admit her in the Emergency Room and she passed away 3 days later. I would not like to scare you by giving details of what happened after my mom's last chemo session.

But here are a few things that I would like you to know:

1. In my opinion, please dont tell your mom about her disease. (I hid it from my mom so that she wouldn't have to bear the shock.) If you have already told her then its ok. I hope she is mentally strong. 
2.  Please love her and give her the utmost care possible at all times.
3. Tell her that you all are there for her and that she will get well soon.
4. Hold her and assure her that everything is all right.
5. Give her whatever she wants
6. Keep her spirits high...talk about all the good days and reassure her that all will be fine.
7. Give her medicines on time.
8. Be near her always.
9. Make her life as peaceful and as comfortable as possible.
10. There may be time when  she may say things that make no sense at all...just go with it and don't correct her...(it is part of the disease thats affecting her brain)
11. Keep asking her if she is comfortable or not...
12 Also ask her if there is any pain. If yes, then do give her the medicines as prescribed by the doctor.

I am crying while typing this. I am so sorry you have to go through this. I pray to god that a miracle happens and your mom gets better....

Be strong Nikkiw91. 
I am here to support you.

God bless you wherever you are.

Best wishes and regards,
Ravi

Thank you for your kind words Branoc.

My mom passed away on 20 march 2024. It has been 2 months.
It has been quite difficult for me. 

I am sorry for the late reply. I just didnt have the strength to do anything after she passed away.

But, I would gladly support anyone in this forum by way of my experience as a caretaker.

Please stay strong all of you.

God Bless You All !!

Regards,
Ravi

so sorry for your loss, Ravi. Sending love and light and hugs

Wee Me xx

Oh Ravi, I am so so sorry for you loss. 

It's just horrendous... We can see some signs of mum deteriorating, but she hasn't started radio/chemo yet. In fact we are looking on booking a holiday away asap before treatment starts.

Sending you love and strength x

Hello Ravi and Nikki,

I'm so sorry to hear about the loss of your mum. I can only imagine the pain you’re feeling and the frustration.

My Dad has recently been diagnosed with a GBM in the left frontal lobe, he’s also over 70. It’s now been almost 7 weeks since the scan, and around 9 weeks since the onset of symptoms. So far he has had the craniotomy to remove most of the tumour. The radiotherapy (and hopefully chemo if he’s able to have it) is scheduled next month. We are still quite early in the journey, as it was only mid April when the scan revealed the tumour. 

During the first steps of our journey, the GP visits and A&E were extremely traumatic, but I’d be here all day if I started to go into detail about how the system initially failed us. My dad had very concerning symptoms which got increasingly worse over a couple of weeks, these included confusion and issues with cognitive function - I’d predict he was functioning at around 10% of his normal self - it was devastating. It was painful and worrying to see, but the doctors initially put this down to a reaction to other medication. After being admitted to A&E, and them finding the mass on the brain, he was given steroids which significantly improved his symptoms within a week of taking them, and these continued to work wonders up until his craniotomy. He’s still taking them and is doing well.

My Dad’s surgery went well and they were able to remove most of the tumour. He was out of sorts for a few days, but was able to come home 4 days after surgery. His progress once he got home was really incredible, and he was up and about, in the garden, doing things, which he’s continued to do since. He’s always been active and so far nothing has stopped him getting back to himself - which I pray continues as we start the next chapter in the treatment. He has some symptoms (some numbness and he gets tired sometimes) but his recovery and attitude so far has been really remarkable. The diagnosis has been really difficult and upsetting for us all, but I’m trying to be as positive as I can, and I’m just thankful that so far my dad’s responded well and he’s back mostly to himself.

I know the information for the over 70s is worrying, and I’m so sorry Ravi that your mum’s experience was so poor. I just wanted to share our experience so far for anyone else who is on this journey with a loved one over 70 - I’m not sure what the future holds on this journey for us, but so far we’ve had some blessings, which have been great lights in the darkness, so I hope they continue.

I hope you’re doing okay and you’re feeling better soon. Your mum would be so proud of your strength Ravi, times like these are the hardest. 

I hope everything goes well with your mum’s treatment Nikki, and she’s feeling as well as can be. I think we’re at similar stages in the journey, so sending lots of love, hope and strength. 

Sending warm wishes to you all x

Hi, my Dad has GBM. He is 73 years old and they say it’s inoperable. We live in Cornwall, and I’m just wondering would we have more hope for an operation if we lived elsewhere. I’m just praying and wishing for anything. If anyone can help. 

Hi Briann,

I'm going to say probably not within the UK and perhaps not even if you were in any country. I say this because I think the criteria across the UK are fairly standard and there are many instances where surgery just doesn't have enough benefit to outweigh the risk involved. 

I'm in Devon and my wife was operated on at Derriford. The neurosurgery team are excellent but when her tumour came back they said it was now inoperable because of it being multi-focal. She was also starting to deteriorate and there was the question of remaining quality of life if she had to undergo further surgery. 

Have you had it explained why surgery wasn't possible for your dad?

Have they offered radio and/or chemotherapy for him? 

I'm so sorry. It's just beyond cruel.

Chris

Hello, yes. They said they couldn’t do anything. They just sent him home.with steroids and Kempra. Dad is still walking and talking well. Dad was given a month and it’s nearly 4 months. His own mother ( my Gran), past 17 years ago with a brain tumour. It’s awful, my poor mum seeing her lose her strong husband, day by day. Me and my sister are trying everything, and getting nowhere. There is a time, very soon where we will have to let him go. It would be cruel but respectful. Thank you so much for replying, and your kind words. Everything was worth the ask. Xx