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Living with incurable cancer - stage 4 glioblastoma

Paul-GBM4
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I was diagnosed with a grade 4 Glioblastoma ( Brain cancer) in July 2022   initially it was investigated as a secondary cancer , as i also had a lesion on my liver. But when that came back benign, I opted for a craniotomy to have the mass removed . After surgery, I was asked to cone and see the surgical team and also received an appointment with oncology for the next day. The surgical team told me, the mass had been identified as a grade 4 Glioblastoma and was incurable and on average life expectancy was 12 to 18 months.  I am not ready to give up and promised my 4 grown up children (27, 25, 22 and 16 ) I would bear it.

Initially I found sleeping difficult and wake every hour through the night (but overtime this improved,  I'd had 6 clear quarterly scans so started to believe I was in the 1% club that actually survived, then in May my scan showed regrowth, I had my second Craniotomy 3 weeks ago, and since coming out of hospital 24 hours after brain surgery,  I am back to waking regularly during the night and being an emotional wreck. I don't have as strong belief that I can beat it anymore,  , but need to get back in that head space,  any suggestions welcome . Talking about it to family is hard as I try and protect them from the reality of the situation,  and friends don't seem to fully understand 

Paul  x

  • Hello Paul

    I'm sorry to hear about your diagnosis and all that you've been through in the last two years. It's undoubtedly been a difficult time and natural that you've been struggling with your mental health as a result. You've been through such a rollercoaster anyone would find it difficult to maintain a positive head space. 

    It sounds like you are close to your family. It's good to hear that you have their love and support through this time and it's understandable that you want to try and protect them. I wonder Paul if you have had any professional counseling support since your diagnosis? Often having someone to talk to who is not a loved one, friend, or directly linked with your care can help. Having a safe space to talk about how you're feeling and explore your emotions can be a great help with managing your mental health. 

    If this is something that you think may be helpful to you then there are a few options you can consider. Do talk with your clinical nurse specialist as it may be that the cancer team has access to a specialist cancer psychologist that you can be referred to. If there is a Maggie's in your local area then you can also consider getting in touch with them to access their support.  The Brain Tumour charity also has lots of support options available. Your GP should be able to let you know what options are available to you locally and may be offer something more short-term to help with your sleep patterns. 

    If you'd like to talk with one of our nurses I know they would be happy to listen and offer any advice, information, and support they can. They're available Monday to Friday 9am to 5pm on 0808 800 4040. 

    I do hope that things settle for you Paul and that you're able to get some support to help manage your mental health in a more positive way. Don't be afraid to lean on your family. Even though you want to protect them, I'm certain that they will want to offer as much help, support, and love as they possibly can. 

    Best wishes, 
    Jenn
    Cancer Chat moderator 

  • Offline in reply to Moderator Jenn

    Thanks for the response,  so far I have not had any formal councilling , but I think the think the time  has come to look into it , my wife and son went away last week , as I was recovering from the second craniotomy,  so I spent the week with my sister in Yorkshire,  since coming back home,  I have been struggling with emotions , and my wife isn't coping with it and tells me I need to get over it and live and uses phrases like "it is what it is !" Which makes things even harder. As it feels like she doesn't care , I know that she does but she lost her first husband to cancer and has her own health issues so is probably scared about being on her own again , we also have 4 adult kids 3 of which have moved out and have their own lives the youngest 16 year  old boy with adhd and high functioning autism.  He has taken to storming off when he can't cope, I can't cope with his attitude , and he then gets angry. And everything escalates. I feel like me being here makes everything worse. So struggling to find my positivity.  When I wqs first diagnosed in June 22 I was physically strong but mentally a wreck, but having had 6 clear scans had started to believe I could beat this. In may when the scan showed regrowth , I had to face up to the fact that it's less likely that I'll survive , and as , I am now on steroids and 4 weeks past surgery , struggling to sleep and about to start chemo , feeling like I am a burden and making things worse at home, and so not sure if there is any point in going through further treatments. Can you point me in the direction  of someone who can help , I am seeing the oncologists on Friday,  but not sure they are the right people. 

    Regards
    Paul
  • in reply to Paul-GBM4

    Hi Paul, 

    We have some information about counselling on our website, including sections about the different types of counselling that are available and how to find a counsellor.

    I hope this helps and all goes well with your appointment on Friday. 

    Kind regards,

    Steph, Cancer Chat Moderator

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