Mum recently diagnosed GBM ...

Hi Sam,

Welcome to the group and so sorry to hear your news. I cared for my wife who was 47 and had a GBM. Thankfully she was able to have surgery and treatment so I guess she was "lucky" but we lost her in February, 18 months after diagnosis. 

My usual intro to the group is below but just to respond to your questions first. It might be worth seeing if you can speak with the oncologist about why treatment wasn't possible. It is unfortunately quite common for surgery not to be an option. Sometimes they give palliative radiotherapy but it largely depends on what the MRI shows and it may provide negligible benefit if the tumour is very advanced. When my wife's recurred back in November they said further treatment wasn't possible as it would just further degrade her quality of life.
Has your mum been passed to a palliative care team or hospice support? If not then do chase her GP to get this started as they can be invaluable. 

I wish I could help you with timescales but I can't. There are some amazing stories of people who seem to just keep going despite the odds but there are equally others where people deteriorate very quickly. Sorry that's not much help I know but I'm afraid it is a case of just playing it by ear and keeping an eye on her symptoms. I found it useful to keep a journal for this that I could then share with healthcare professionals when asked how things have been.

Again the seizure question isn't possible to answer. My wife didn't have one until very near the end when they started being triggered by moving her between the commode and the bed. For a lot of people it's worse for the caregiver than the patient. My wife has no memory of it after they had happened but it's tough to watch and stay calm.

Hope some of this is useful and please do use this group to ask questions (even if we can't always answer) or just vent how you're feeling.

Wishing you and your mum all the best,

Chris

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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.

Have you or your mum been offered any counselling at all? Either way it’s always good to talk so please remember you can call the Macmillan Support Services on 0808 808 00 00 - most services are open 8am to 8pm, 7 days a week Clicking here to see what is available. This service provides lots of cancer information, emotional support, benefit and financial guidance or just a listening ear.

Talking to people face to face can be very helpful so do check to see if you have any Local Macmillan Support in your area, do also check for a local Maggie's Centre as these folks are amazing. Or it may be as is the case for me that there are other local charities that can support you.

Hi Sam

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

I don't have a lot to add to what Chris has already said but just wanted to reach out.

I supported my late husband through his GBM journey. He was 50 when he was diagnosed out of the blue, initially given 12-15 months and stubborn bu***r that he was, he lasted 38 months and one day.

There are no hard and fast rules here  as everyone is unique. I would echo Chris' advice to talk to the oncologist to ensure that you fully understand their rationale. It seems to be pretty standard practice to treat for potential seizures. G had one major seizure two days before his surgery in Sep 2020 and didn't really have any issues with them again until Feb  2023. Last summer they manifested as focal seizures where he would just zone out for a minute or two or longer. The first sign one was imminent was he got goosebumps and the hairs on his arm were all on end. He was on Keppra right from the outset but it was a low maintenance dose up until last year then the dose varied as the months went on. Steroids (dexamethasone) were also introduced and again the dose went up and down on those.

I'd also encourage you to chat to your  GP to introduce you to the community nursing team and local hospice community team. Getting to know these angels in disguise ahead of time is really helpful. We were introduced to our local team  at end of Feb 2023 and they were a huge support right through to late October when G passed away.

Over my time within this community I've written a few community blogs (our story is also on my profile so I'll not bore you here) but I thought these blogs might be helpful at this stage

     Caring for a partner with a brain tumour – a Community member’s story - Macmillan Online Community

“I’m fine”: how do you really cope as a carer? - Macmillan Online Community

This is a safe and supportive space so please reach out here 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.

It’s always good to talk so please remember that you can also call the Macmillan Support Services on 0808 808 00 00 - most services are open 8am to 8pm, 7 days a week Clicking here to see what is available. This service provides lots of cancer information, emotional support, benefit and financial guidance or just a listening ear.

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

love n hugs

Wee Me xx

So sorry so hear this, Sam. What an incredibly difficult time for you. 

WeeMe and Branoc have said it all already and unfortunately, one of the most difficult parts of this disease is that it is so different for everyone. My partner was diagnosed back in June last year and, like your mum, she was given around 3 months and told she wouldn't see the end of summer without treatment. Her tumour was and remains inoperable but they did throw everything else at it, brachytherapy, proton therapy, chemotherapy and she is still here today, 10 months after diagnosis. I won't say she's going strong, because she isn't, she is getting gradually weaker and more unwell but she hasn't experienced any seizures at all yet and she is still mostly up and about.

I do think it is worth questioning why they believe no treatment other than steroids would be of value, the treatment can be a hard road but it does usually keep things at bay for a while. 

It is so very unfair, hoping for the best for you and your mum