Hello I’m new

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My husband has two brain tumours and next week he has radio surgery  (SRS) for the fourth time  - this time 5 sessions, previous treatments have been just one. Concerned about the future - every three months follow up scan they find something new and each surgery it destroys a little bit more of his brain. 

  • Good morning I am sixty I had diagnosis of two brain tumours. Which they kept bombing with radiation treatment. Operation which removed some above right eye apparently in hospital for over three months. Sorry I am vague with the technical term etc, all I remember about being in hospital, when all family was called into discuss with consultant, he gave be at best three months. Family thought to get me home, that was five years ago. Since then yes life has changed, wobbly and wife has left me. So things has been hard taking a lot of pills daily, but now looking after myself back cooking etc, got my care team down to twice a day for hour in slot. At first it was four times for two hours. Must be hard for my x four years of hell , but family stood strong, seeing the grandchildren growing up, and my son twins which were born when I was in hospital. Son got lot of pictures of me holding them in my bed with tubes etc everywhere. 
    So hopefully this might give you some hope that your husband might like me prove everyone wrong. 
    I refused anymore treatment when they got me home, just the pills . I have changed but five years on makes my only memory of the hard years was the consultant saying three months at best. 
    This is a horrible disease which our brilliant NHS still hasn’t got all the answers.

    wishing you and family all the best wishes in your journey. Stay strong and support all.


  • HI Freedom Duran

    a warm welcome to the group. Sorry to hear about all that that's going on. 

    It's only nature to feel concerned. You don't mention the type/stage of your husband's tumours but in reality, any brain tumour journey is an emotional rollercoaster ride. 

    I supported my late husband through his GBM journey for over 3 years and I get the anxiety around those three monthly follow up/maintenance scans. All you can do though is take this journey one step at a time.

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

    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 take care of your wee self here too. Supporting someone on this journey takes its toll so please take time to recharge your own wee batteries. Taking "me time" isn't selfish. It's essential to help you be in the best place to offer support.

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

    love n hugs

    Wee Me xx

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