Dad diagnosed with Grade 4 Glioblastoma

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Hi All, I am new to this forum and just reaching out for any similar experiences or advice. Just today my dad has been diagnosed with Grade 4 Glioblastoma and it is a large one. He’s 73 and up until a few weeks ago he was a normal, fit and active man. There had been a few signs that something wasn’t right as he was having a few issues remembering things and at the end of last month he took a funny turn which made us think he’d had a stroke and we rushed him to hospital and that’s when the tumour was discovered. Today’s appointment was tougher than we had expected. In the last couple of weeks he’s gone from walking, talking fine to barely being by able to string a sentence together and needing help to walk, he’s deteriorated so fast. Doctors have minimal options for him right now as he’s so weak and won’t consider surgery unless the increased dose of steroids helps him recover somewhat. If the steroids don’t help him improve enough for surgery then we are looking at 2-3 months! Our world has turned upside down and don’t know what I’m expecting from this post other than to hear any positive stories or even just a similar story and outcome. Sorry for the long post 

  • Hi, my Husband (51) was diagnosed with the same in November last year, he had surgery in December but they didn’t get it all, in March they told us after he had a seizure that he had days to live and he woke up and has been back with us since! He’s on his 6th round of palliative chemo and we just keep playing with the meds including the steroids to manage his symptoms on a day by day basis - do you have a direct email to your oncology nurse ? 

  • Hi MsBee 

    a warm welcome to the online community. So sorry to hear about all that's been going on.

    I supported my late husband through the three years of his Glioblastoma journey, He was 50 when he was first diagnosed. Nothing prepares you for hearing that diagnosis so I can empathise with the journey you are on.

    You can read the gist of our tale in my bio. 

    Those steroids can work magic so I hope that they have stabilised things for you. G had a love hate relationship with them but they did support him greatly through the last few months of his journey. Just watch - they can make the person quite cranky/nasty and they do increase appetite too.

    This is a safe and supportive space so please reach out here anytime. You might also want to explore (+) Glioblastoma multiforme brain tumour forum | Macmillan Online Community There's always someone around here 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.

    Please take of your wee self here too and don't underestimate the toll this is taking on you. Take time where you can to recharge your own batteries.

    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