Glioblastoma stage 4 for best supportive care

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My dad had a cataract operation early March.  Following this he had word finding difficulties and then had a “funny” sensation in his right arm.  He was taken to hospital with suspected stroke.   Few days later an MR revealed glioblastoma stage 4, treatment was not an option and he was for best supportive care and 24 hour nursing care was advised as he could start to have seizures.   He also lived alone (my mum died almost 2 years ago of a stroke).

he went into a nursing home and over the course of the last 6 weeks he has deteriorated.   He is currently taking steroids but will be changing to antiepileptics.  We feel he has been “plonked” in the nursing home we have no idea what to expect.   He is now incontinent switching between nappies for want of a better word and catheter.  He is sleeping most of the time apart from meal times.  We have been told this is part of the seizures but today that it’s because he is lay in bed all the time.  He was interested in the Tv but no longer interested.  He seems to understand things said to him but can’t talk properly to us.

Has anyone had a similar experience of what g to e seizures are like.  We were told worse case scenario he had 3 months and we are getting on to 2 months now.

thanks for any advice u can give. 

  • Hi Kazg

    a warm welcome to the group. So sorry to hear about all that has been going on with your dad.

    I supported my late husband through his 3 year GBM journey. He went through a spell last August of  having multiple focal seizures per day. He was admitted to our local hospice for a couple of days until they got them under control with a high dose of Dexamethasone and Keppra. It did eventually settle them.  I'm not sure if they are similar to what your dad is experiencing. G used to zone out totally for up to 5 minutes at a time. A couple of times he lost consciousness altogether. When they were at their worst he was prescribed midazolam to help things then the  Dr added a low dose of lorazepam into the mix too which helped to keep him calm. 

    A GBM journey is a total emotional rollercoaster and I'm quite sceptical of the timelines Drs offer. We were initially told G had 12-15 months. He lived for 38 months and 1 day in the end. At various points in the journey we were told he only had days or a few weeks. That in itself is emotionally and mentally draining. I came to the conclusion that there are no hard and fast rules. This journey lasts as long as its meant to last. 

    My husband was 54 when he died. In some ways he was lucky in that he was physically very fit up until the bitter end. Cognitively he wasn't and his symptoms were more like dementia than cancer. During the last week of his life he became incontinent and I'm almost glad he was so ill by then that he knew nothing much about it as he would have been horrified at being in a nappy. 

    G's speech and understanding were compromised from very early on but they got so bad towards the end that he wasn't making any sense. He was still coherent but he was talking gibberish a lot of the time. He too loved to watch TV bit could only watch things he'd seen several times before as he couldn't follow the storyline of anything new.

    The sad reality is that all you can do is take this journey one day at a time. In our case once they got the seizures under control, G was better for about 8 weeks but then the tumours began to impact on other things and things went downhill very quickly in mid-October.  

    Sorry if this isn't the picture you'd expected me to paint here but in my experience its better to be open and honest. 

    Please make sure that you are taking time to take care of yourself here too. Supporting a loved one through a GBM journey is exhausting mentally, emotionally and physically. Please take time to recharge your own wee batteries.

    This group 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