Hello

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I am new here as my beautiful daughter was diagnosed with GBM back in July after seizures while still on holiday in Greece.

this devastating disease has now affected her personality, behaviour, short term memory and emotions. As a family we are strong and positive but I am finding it difficult to find some help/support outside research and family:friends.

I would love to know if anyone has found support specific to  GBM in the UK.

thank you

  • Hi

    Sorry to hear the news about your daughter. It is a very difficult situation to find yourself in

    I have used this forum for advice and support. I hope that you will find that here too.

    The nice part of this place is that you don't have to explain. We all understand because we have lived through the same experiences. 

    Unfortunately for me , the journey has ended for my wonderful, witty and clever husband but I still log in here from time to time

    Please try to make some time for yourself which I know is nearly impossible

    Wishing you well

  • HI Lozza67

    welcome to the online community. So sorry to hear about your daughter. It's such a cruel diagnosis.

    As Life Detour says this group is very supportive. It's the best I've found over the past 15 months.

    My husband (51 at the time) was diagnosed with a GBM4 in Sept 2020 so I can empathise entirely with where you are coming from here. I struggled to find any support or help until I found this forum. HIs tumour is in the Broca's area of the brain that controls speech, language and understanding. Physically he's still in good shape but mentally he's a bit like a dementia patient- easily confused and with little short term memory. 

    We might not have all the answers but there's always someone around who gets it. There are two other groups that I have drawn support from. They are Brain cancer forum - Macmillan Online Community and Carers only forum - Macmillan Online Community

    It’s always good to talk so do 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.

    If there's any questions I can answer for you I'd be happy to support where I can. 

    For now, please try to stay positive and stay strong. Sending you a huge virtual hug.

    love n hugs

    Wee Me xx

    Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm