Hi,
My mum was diagnosed 2 years ago with GBM and was given a prognosis of 2 years. We are so grateful she is still here and receiving stable scan results.
Since she was diagnosed the right side of her body has never been the same, it seems completely numb. However, she has still managed to get out and walks around shops unaided (although she is unsteady and walks differently).
Recently she has had a few occasions where she has been out and has frozen unable to move, and since this she can’t go out without her legs feeling like jelly. We tried to go to the shops yesterday but walked into one shop and had to turn back around to leave as she didn’t feel right. I’m just wondering if anyone has experienced anything similar? She is worried that she will be stuck in the house for the rest of her life.
Since diagnosis she has also found it extremely difficult in the car. She is so scared of having an accident she will shout and get upset in the car, blaming it on my dads driving although he is driving normally.
Just turning here for some comfort really as I’m feeling the reality of everything again being 2 years in.
Love to you all and your families x
Hi Justlooking
Glad to hear that your mum is doing ok two years down the line.
I'm not familiar with the changes that you mentioned but I would encourage you to mention those to your mum's medica team. I supported my late husband G throughout the three years of his GBM journey. He avoided shops where he could as he got very confused about having to pay for things. It was fine if he could tap his card to pay for whatever he wanted but he couldn't remember how to put his PIN in or what it was. He suffered from focal seizures at points and would just zone out for a few moments. Sometimes these episodes lasted seconds and others lasted several minutes. The first sense he got of one approaching was that the hairs on his arms would stand on end, (Bizarre I know but that sign was a reliable warning.) Introducing steroids back into his medication settled these on the whole for a few weeks.
G was always the worst passenger in a car regardless of who was driving but he did get more agitated as time went on. I always just put it down to the personality changes we were seeing with the progression of his GBM. It's weird what gets them really panicky. For G it was external stairs. He was fine with the stairs in the house but any that he encountered outdoors scared him.
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 strength. This is an emotional rollercoaster ride for all involved.
love n hugs
Wee Me xx
Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm
