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Scared of losing my mum

Slp93
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So 4 weeks ago my mum was diagnosed with glioblastoma stage 4, she had debulking surgery but unfortunately she had stroke during that and now has no movement on her right side, I have 2 younge children 4 month old and a 2 year old who loves his Nana very much, I'm just scared of losing her we don't really know how long she's got and because of the stroke she still stuck in hospital which means my children can't see her, I don't want them to forget her and I've also got to be the strong one in the family and feel like I'm a little numb about it all, please help me feel less scared

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    Hi - I'm so sorry to read about your mum. My lovely dad was diagnosed last august with a GBM and as you are feeling now, it totally shocked us all at the start of this journey. I couldn't believe that my fit, healthy dad and grandad to my 3 kids was diagnosed with a brain tumour and then to digest the poor prognosis news.  But I will say that you do quickly adjust to you 'new normal'- that's not to say it's easy, but what else can you do? I've learnt to take it a day at a time and make sure I have as much knowledge on the tumour, the treatments and ask lots of Qs at every appointment. You will feel a bit more in control once you get to grips with understanding the cancer and building relationships with the Doctors's and other health professionals you'll meet along the way. 
    I've been overwhelmed with how lovely the doctors have been and even with a grim prognosis there are quite a lot of positive stories thay give you hope of time and quaility of life. We've had some touch and go moments but modern medicine is amazing and given us more time with my Dad. 
    Like your mum, my dad suffered set backs which meant he had some prolonged hospital stays which is an anxious time.  Try be there as much as you can for her and say the things you want to say. Don't forgot to take some time for you though so you can digest what's going on and spend time with your little family. Maybe draw up a rota so between family and friends they can visit when you take some time to breathe. 
    It really is an agonising time and I wish I could say more to help but as I said earlier, after the initial shock I've learnt to enjoy each day I have with my dad and not look too far ahead as my head can't cope with that.

    My kids know grandad isn't well but they really cheer him up and when he was in hospital he loved hearing their voice notes and videos so keep sharing those with her. 
    Finally, try talk to friends and family about how you feel - saying it out loud can help and it's ok to be upset, angry, scared etc. sending you a big hug xx

  • Offline in reply to Pipp15

    Wow Thank you so much for advice hope your Dad is okay, its nice to know that someone else felt like I do, I will definitely take your advice on board much love to you and your family

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    I was diagnosed with GBM4 nearly 3 years ago.  I underwent surgery and chemo and radiotherapy. To my family it was a life changer. My wife and children have given the support and encouragement to live every day. I surrounded myself with people who made me strong. I found I had no time for fair weather friends. I read all the articles about this invader and some comments scared the hell out of me I confess initially. Everyone is different I have had 2 years of stability, however it has returned and is now inoperable. I cannot sit here looking on the dark side. I take each day as it comes and treat it as a bonus. I have my MRI every 3 months and chemo every month so carry on regardless. 

    John 

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