I never imagined I'd find myself joining a forum like this, but sadly, my mum, with whom I'm incredibly close, was admitted to Luton & Dunstable Hospital in early June after experiencing slurred speech for the first time. She stayed in the hospital for over a week as they conducted numerous tests (CT, MRI, MRI with contrast, and all the blood tests). Initially, they suspected a stroke, but it was later confirmed that she needed to be transferred to a neurological specialist at Queen Square for a biopsy.
Two weeks ago, we received the devastating news that she has stage 4 glioblastoma. The tumor is inoperable, and she is about to begin an aggressive six-week course of radiotherapy and chemotherapy, which will take place daily from Monday to Friday.
To say I’m heartbroken would be an understatement. It's incredibly difficult to accept, especially since she seems so well in herself. Since the episode of slurred speech, she hasn’t experienced any other symptoms. She currently lives alone, with my brother just down the road, while I’m in London and she’s in Harpenden. Her prognosis is bleak, and the thought of losing her so soon is absolutely devastating. I’m also deeply afraid of the potential symptoms she might face, such as seizures, aggression, and the possibility that she may no longer be the bubbly, smiley mum I know and love.
I’m trying to prepare myself for what lies ahead in the coming months, but I’m not sure where to begin.
Hi MarioG
a warm welcome to the online community. I'm going to start by offering you a huge virtual hug. I'm so sorry to hear about your mum and can totally empathise with your fears and concerns.
You can read the gist of my story in my bio but I supported my late husband through the 3 years of his GBM journey so I get it.
G was able to have surgery but did later on at varying points in the journey say he regretted having it. The only treatment he accepted was the 6 weeks of oral chemo and radiotherapy. He coped really well with this regime and his main side effect of it was fatigue which kicked in around week 4 and lasted for about a month after the treatments finished. He did appear slightly worse during the treatment but that settled once the treatments were over.
You said you didn't know where to begin. You have begun- you've reached out here and that's a big first step to take. This is a safe and supportive community so please reach out here anytime. There's always someone about 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.
You might also want to explore one of the other groups Glioblastoma multiforme brain tumour forum | Macmillan Online Community when you feel up to it.
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 take care of your wee self here too. Taking some me time isn't selfish. Its essential to help you keep your batteries charged so that you are in the best shape to support your mum when she needs you.
Take this journey one step at a time. Remember to breathe. You're coping so much better than you give yourself credit for (you'll just need to trust me on that)
love n hugs
Wee Me xx
Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm
