Mum, 74 recently diagnosed with GBM

Hi Yelloasteroid

a warm welcome to the community. So sorry to hear about your mum's diagnosis.

I've been supporting my husband through his GBM journey. He was first diagnosed in Sept 2020. Like your mum, he had surgery. He also underwent the 6 weeks of radiotherapy/oral chemo then declined all further treatment after that. He's said several times since that he wishes he hadn't had the treatment and on occasion wishes he hadn't had the surgery either.

Over the past 3 years I've read countless articles and heard countless stories via this community and the one thing I've learned is that everyone is unique. GBM tumours are rather mysterious and more than a little bit evil too. They impact people in so many different ways. There is no one size fits all approach to them. At the end of the day though, you need to accept and respect your mum's decision as she is the one living with this 24/7. It's not always easy to accept it - I get that.

Be mindful/wary of timeframes. These are best guestimates based on published averages and no one is average. We were initially told G had 12-15 months...that was 3 years ago give or take a week or two and he's still physically very active. His tumour was/ is in the speech and language area of the brain so his symptoms are all largely cognitive so its more like someone with dementia rather than cancer. 

This is a safe and supportive space so please reach out here anytime. There's always someone around to listen who gets it, someone to hold your hand and to offer that 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.

Please make sure you take care of your wee self here too. Taking "me time" isn't selfish. In fact, its essential to help put you in the best position to support your mum. I'll not lie this can be a gruelling emotional rollercoaster and it takes its too. After three years, I'm not too proud to admit that I'm exhausted - mentally, physically and emotionally. 

for now though I'm sending you and your mum a huge virtual hug and lots of positive energy. Be led by what she wants to do. Don't assume she's "ill" as these GBMs don't always work that way. Take each day as it comes. Stay strong.

love n hugs

Wee Me xx

Hi there,

So sorry to hear about your mum. I support my wife who was diagnosed in June last year. I'm glad you've found the community here as it will help you just to not feel so alone with all this at times.

Out of interest why did you mum decide against further treatment? We've had the whole shooting match here with surgery, radio and chemo. 

Wishing you and your mum all the best for whatever may come.

Chris

Thank you. Mum's tumour was left frontal lobe and has impacted her mobility greatly. She's also experiencing focal seizures. She was already hard of hearing and urinary incontinent, both have deteriorated further. 

Mum made her decision after a discussion about prognosis with the neurosurgeon. She also felt that surgery had such little impact on her symptoms, maybe her chances of a quality life improvement were slim/non existent. She spends a lot of time worrying about dad, too. Being totally dependent on family is making her very anxious and frustrated.  I've always worked in caring roles, and am taking the lead with her care needs. This is something I'd obviously be willing to do for her indefinitely, but she's not comfortable having everything done for her. It's just so sad as she's had a difficult life since childhood and I really hoped she'd have a less tragic end.