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  • Hi Emmax

    a warm welcome to the online community. So sorry to hear about your mum's diagnosis and all that you are going through. I can empathise with you. My husband was diagnosed with GBM out of the blue in Sept 2020. He had a funny turn while out running mid-July where he realised he didn't know what words/language was. He was only 50 at  the time and still is a total fitness freak.

    As you say yourself it's still early days so please take time to process all that's happened and take each step as it comes. If you feel the steroids are contributing to your mum's behaviour I'd speak to the medical team and see if they can adjust the dose or offer some advice. My husband had to go back onto steroids about 3 months ago and they certainly make a difference to the person's personality. He was initially taking them too late in the day which was disturbing his sleep. Things improved when he began to take them first thing.

    Please also remember your mum is recovering from major surgery and that takes time too. She's also probably quite scared inside even if she doesn't say it out loud. In those early days, my husband would disappear off for really long walks on his own. At the time I was worried sick but looking back I recognise he needed that time alone to process all that happened in a short space of time. Be patient here...this is a journey that takes endless patience. Be led by what your mum needs or wants.

    Not sure if it will help or not but I shared our tale on a community blog for MacMillan last year. Here's the link Caring for a partner with a brain tumour – a Community member’s story - Macmillan Online Community

    This is a safe and supportive community so please reach out here anytime. There's always someone about to listen who gets it, someone to hold your hand and to offer a virtual hug when its needed. You're not alone. We've got you.

    You might also want to explore Glioblastoma multiforme brain tumour forum - Macmillan Online Community orCarers only forum - Macmillan Online Community Personally I've drawn a lot of support from this community over the past 33  months.

    It’s always good to talk so please remember that you can also 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.

    Please make sure you look after your wee self too here. Taking "me time" isn't selfish, it's essential to help you keep your batteries charged and to put you in the best place to support your mum. I'll not lie - this is a gruelling emotional rollercoaster ride and after all these months I'm not too proud or stubborn to admit I am emotionally, mentally and physically exhausted. So go for that coffee/drink with friends, go for a walk, go to the gym or whatever it is that you do to make you feel like you.

    If there's anything I can do to help support you here, just ask.

    For now though I'm sending you a huge virtual hug and lots of positive energy. Stay strong.

    love n hugs

    Wee Me xx

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

  • Thankyou I do appreciate your reply I have already used the MacMillan help support and they have been truly amazing