Surprised by a Brain Tumour

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Hi Everyone

I woke one morning in June with a floppy Right Leg, although I could walk I definitely had neurological symptoms .... they got worse... I had no other symptoms apart from patchy severe nerve pain in lower Right leg in the preceding weeks. My GP  thought I had injured myself ..... OMG.... so I called an Ambulance . After CT & MRI a Left side Parietal 4 cm Tumour and major inflammation, with an additional small tumour in my right lung diagnosed... Steroids helped me to regain some R side function. I was referred to St Georges where a marvelous team removed the tumour followed by radiotherapy by the Cyberknife at The Marsden. I write this as it may help those of you who are facing sudden decisions. 

Initially the tumour was thought to have metastasized from the lung, but the pathology has given a different result, that may work in my favour as the one in my lung is a tricky gremlin. 

I am here to, once I can pin down the pathology of this brain tumour engage with your experiences, ask clinical questions, and link up with some buddies, it is all too much for friends to handle at times so I need somewhere else to be. 

As I suffered neurological deficits on my Right Side I would be grateful for the experiences of others in recovering normal function. I can walk but have intermittent sensation, numbness, cramps, pins needles etc remaining in right leg. I am not on any medication, although I am exercising religiously. 

If you have any physiotherapy wisdom, experience of non-opiod drugs (although they all look awful) that you found helped I would like to know

Wishing you all a good day  

  • Hi Kitchi, just briefly before I have to go out.. Mine is LT parietal & coming up 8 years with no massive problems?

    Can’t say I even worry about it too much either.
    Ok well, it’s taken me a while to “come to terms” as the phrase goes, but best wishes to you in these your early days

    I’ve written plenty in the past on here about it - read it & DM me if you feel like it? 
    Li

  • Hi Li 

    Thanks for the support, I will be more confident seeking advice when I know the exact pathology of my gremlin, should know soon. Good to know you are still in a good place a few years on. 

    cheer for now 

  • Oh yes of course - grade 

    Forgot to say mine is Grade 3

  • Hi Kitchi

    so sorry to hear about all you've been through. I see this group have already reached out to you to offer their support which is lovely to see.

    You might also want to consider using our  Ask an Expert - Macmillan Online Community  or talking to your GP or medical team or giving our helipline a call. (The number is below) 

    Everyone's journey through this is different so equally everyone's experience is different. 

    I am supporting my husband through his brain cancer journey but we have no experience of the symptoms you describe. Sorry. #

    sending love and hugs

    Wee Me  xx

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