Communication Issues - Grade 4 Glioblastoma

My husband was diagnosed with Grade 4 Glioblastomas in April 2023.  Since November last year he started to struggle completing a sentence, now he barely says anything to me.  This does seem to  beworse when we talk, he seems to speak much better to others.  More recently he has stopped using his mobile phone not even to message friends or to look at social media.  He was very social on his phone so this is quite upsetting.  He says it's because he can't read what they have put and that he can't type a message to them. I've tried setting him up with voice control messaging but he won't even try it.   For most of the time he just stares at the wall and won't speak.  I beleive this is probably partly down to tumour progression, but I also think the majority of it maybe down to him losing the ability to communicate because he spends so long alone. Unfortunately I have to work full time so most of the day he is alone.  I try to encourage him to get up and do things as I know it will help him mentally and physically, but he doesn't have any motivation at all.  It's just sad to see him like this when I feel sure he would be so much happier if he could interact.  The problem is, I just don't know where to turn to get help.  Any adivce would be much appreciated.

  • Hello and thank you for posting.

    I am sorry to hear about your husband and the situation you find yourself in. Living with a brain tumour can bring up many different difficulties to cope with, and watching someone you love change can be so hard.

    Some different charities and organisations may be able to help in this situation with social groups or meet-ups, I have listed some here.

    The Brain Tumour Charity and the Brains Trust may have suggestions.

    The cancer care map lists what services may be in your area that are useful.

    Macmillan has an extensive support network, this page in particular lists what may be available to you more locally.

    Do talk to your husband's specialist nurse (CNS) if he has one, or at the Macmillan, Maggies centre at your husband's hospital, as they will also know of things more local to you that could support you and him through this time.

    Take care and I hope you get the support you both need. If you would like to talk things through with the nurses on the helpline then call 0808 800 4040. Lines are open mon-fri, 9-5. 

    Sarah.