Recently diagnosed with Glioblastoma (GBM)

  • 8 replies
  • 49 subscribers
  • 124 views

Hi All,  I’m new to all this, ie forums, so bare with me as the brain surgery drilled down a bit close to the tumour so takes me I while to txt Face palm‍♂️

brief story..4 months ago , i had a seizure  out of the blue, and on the back of that I have been diagnosed with a GMB grade 4 tumour which is apparently  terminal, ..   I’m a positive person and Believe family and friends will help me smash past the general max shelf  life that science gives me , and every day since the ‘news’ I live each day as good day with my wife and boy, .

Currently finding hard to communicate via at txt or email , so is there another option where I communicate via a ‘group chat’what’sapp by phone or something where people are in  a similar situation   

Cheers

Sean

  • hi sean .similar here. apparantly theres programnes where you talk to your computer or phone and it types it for you. sounds like you are doing well. so far ive exceeded all prognosis. going to take a lot more than a brain tumour to get rid of me!

  • Me too Sean, same diagnosis and still stable four years on. Stay positive and try to exercise your brain - it really helped me after the op (puzzles in my case, but whatever works for you) xx

  • Lovely to hear this , Thankyou for sharing  Raised hands that’s what I done new year (puzzle) ..get a bit frustrated with the lack of energy at the mo, so working on that as well as not sleeping past 3am

  • Yeah, the energy comes and goes - don’t beat yourself up about it, or overdo things. But most days I feel pretty normal (whatever that means).

    you seem to have a good attitude, it’ll really help along the way x

  • Love that, and your words Raised hands.same mindset ,so can relate , but on the off day my brain look at 2026 instead of beyond..for example , I wanted to see snow this year and I did this week, but then got a little emotional because I’m looking at it as a last..I need change that and believe it  ,on all days …..4 years on for you , amazing Punch

  • How could you not get emotional sometimes? You’ve been dealt a rough blow, and you’re facing it head-on. This is good! 
    And the snow was beautiful Heart eyes

  • Hi Sean

    a warm welcome to the group. So sorry to read about all that has been going on.

    I supported my late husband through the 3 years of his GBM journey so can empathise with the journey that you have found yourself on. Very early on G lost the ability to read and used the text to speech function on his pc to have things read to him. I'm not that tech savvy but I suspect that there will be plenty apps out there that convert speech to text. If you give the helpline a call they may be able to suggest something.

    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.

    Love n hugs

    Wee Me xx

    Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm