Glioblastoma 72 Years Old Weeks To Live

My dad is almost 73 years old. He has been diagnosed with GBM and was offered surgery (which he declined). He was told by the neurosurgeon that he'd made the correct decision. He's been given weeks to live and at the moment is still lucid and independent. The tumour is approx. 5cm in diameter. I'm staying with him 24/7 and I am hoping someone here can give me some sort of realistic timescale for when he will likely lose his awareness as that's what I'm dreading most. I'm absolutely inconsolable at not being able to have a conversation with him again and ask his advice because he's been the best dad in the whole world to me. He's my rock and my best friend. It love him so much and this is just too cruel. He only started displaying symptoms a month ago. Steroids are controlling the swelling and he's not in any pain. His main concern is not knowing how life turns out for me and my daughter. At the hospital the doctors and nurses looked at me like they knew this was going to be very quick. 

  • Hi, really sorry to hear about your Dad. I can identify as my mum 72 has a GBM and she is one in my life I've always been able to chat to and receive empathy and support. I understand your main anxiety for your life and obviously you don't want your dad to suffer, it's so so hard..My mum was diagnosed with a GBM May 2016, she asked them specifically not to give her a prognosis, it was her way of coping and seems to have helped her mentally fight it. She had all SOC care treatment including surgery which is gold standard front line treatment if you can. NHS can be very reluctant to be pro active with this disease as they have weigh public spending with chance statistically of a positive outcome. My mum GBM was stable for a long time, but unfortunately returned this past summer (more severe then before). Again no prognosis wanted and mum is still very much a part of life and doing well in herself. She has always focussed on life through out this...my little girl see had seen grow is now 5. NHS reluctant offer active treatment now as probably less statistical chance of success in their eyes. We are waiting on regular hospital's decisions and if they not offering or recommending active treatment, or another op we will contact another hop that suitable & get a 2nd opinion. She is already had Temodor/TMZ chemo which well tolerated and helped keep stable with radiotherapy, but chemo tried again and not working now. I am also currently trying get her referred to private 'Care Oncology' clinic in London (you pay but set amounts many people can afford) as they offer evidence based re-purposed drugs that can prolong & enhance life & are well tolerated. Joining FB groups 'Brain tumour support groups and an American set up but international group 'GBM survivors to thrivers' been very helpful & inspiring. Mum takes lots of supplements which help & would recommend especially to anyone not currently having active treatment, there are special diets can help too. NHS do tend give worse case scenerios prognosis therefore even without treatment (it's your dad choice, but people do live long term with this condition but only if they pro active & have treatments ) ..your Dad could well be here lucid for months not weeks. I'm not sure why chemo (when generally GBM front line chemo well tolerated & radiation, not been suggested as you not mentioned.. I wonder if your dad understandably feels depressed after shock diagnosis & declining treatment as unusual be offered nogthing even 'pallative chemo'. My  thoughts with people's declines I'm not a medic or God, from reading people's posts over last few years who sadly lost their loved ones seems around a month or so in general, but every one so individual and very occasionally people do pass on very quickly as happens some people without condition..a Grandad was watching his Grandson play & smiling at him having lost some his verbal communication capacity & passed on soon after one story I heard..More often over a period of weeks, every family has said peacefully. The disease gives anxiety & little peace, but if patient is pro active you can make more memories with your loved ones. My heart does physically feel what you feeling with anticipatory grief, I've had it for years, none our parents are immortal, it's the hardest fact to accept. This disease highlights this in most direct way...we will survive this (I tell myself daily) and while they are here, it's helped me knowing I'm supporting & helping someone who been there for me all my life. Look after yourself. Much love to you.

  • Thank you so much for your kindness. It really means a lot. We're taking each day as it comes. Surgery in my dad's case wasn't a viable option due to location and size and risk. He also has other health problems and was told by the neurosurgeon on discharge that he'd definitely made the correct decision. We also decided that due to the rate of return that we didn't want to do anything further and focus on quality of life. 

    We've already made some fantastic memories and will continue to do so. 

    I hope your mum continues to fight bravely against this awful disease. 

    Thanks again for taking the time to post such a detailed and helpful reply. X