Hello everyone
i was diagnosed this week with Glioblastoma, and it was a shock, to say the least! They can’t do radiotherapy or operate to remove it as it’s too BIG and right in the centre of CNS, so causes issues with left and right communication. The only option is chemo or to try for a trial, which of course depends on so many factors. And even if I get to trial, there’s only a 2-5% chance of getting rid of it. Any comments or advice gratefully received, Thankyou x
Hi Blastoma
a warm welcome to the group. So sorry to hear about your diagnosis. Life's too cruel for words at times.
I supported my late husband through the three years of his GBM journey. His initial tumour was in Broca's area of the brain and impacted his language, understanding and communication skills from the outset. He was able to have surgery but to be honest, further down the line, he said he regretted having it. Post-surgery he had 6 weeks of oral chemo/radiotherapy together which he coped well with then he declined all other offers of treatment so I have limited personal experience of the treatment side of things. Our journey started during covid so there were no trials on offer.
Can I suggest that you write down all your questions, fears/concerns about the diagnosis and offer of chemo and take those notes to your next appointment. The people best placed to advise you are your medical team as they can see the scan images etc but the notes will help ensure that you don't forget to ask about something that is important to you. There's no such thing as a silly question.
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. 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.
A GBM journey is an emotional rollercoaster so please take this one step at a time. Focus on the facts as you have been told them. Steer clear of Dr Google - he's a scary dude. Everyone's situation is unique too.
For now though I'm sending you a huge virtual hug and lots of positive energy.
love n hugs
Wee Me xx
Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm
