Sunday, 16 October 2016

Taking the brain for a walk.

For those of you who don't know – I can't imagine there are many of you as, let's face it, this blog mentions it a LOT – I have a brain tumour. Read all about my diagnosis in 2014, my operations (plural), the hideous aftermath/'slow recovery' and the surprise radiotherapy RIGHT HERE (start at the oldest post!).


It still feels weird saying it. Like, you'd think after 10-15 years of letting it grow (although I was totally unaware, to be fair) and then having 2 craniotomies a year apart to dig it out (couldn't manage all of it as it's in a tricky spot. I have a wee bit left still) I'd be used to and comfortable with telling people. But I'm not. I sometimes hate telling people, actually. Breaking bad news to and bringing up a tidal wave of sympathy from others is not my favourite thing to do. But there are times when it needs to be said. For instance, I recently told a work superior about my condition because the fact that my recovery was still in progress meant I couldn't work full time – that was hard, but I felt better when I'd told her.

So now you know. Or, you knew but have been reminded. Sorry about that. Let's get to the point of this post, shall we?

I could not have got through some aspects of my journey without the amazing people at The Brain Tumour Charity. That is a fact. They have sent me letters (thanks, Jo!) and presents, and added me to their 2000-strong sufferers' support group on Facebook – which has been mind-blowing, hearing what others are going through and giving support as well as receiving advice on certain things. And the virtual group hugs are immense.
I've also had a chance to see around their offices, which was actually really fun and enlightening. The energy in that building was warm and happy – and determined.
Recently I've been helping them out with writing bits and pieces, tweeting, and even recording a little something they could use in promo. I am always excited when an email from them appears in my inbox, and I can always make time for their projects.
So yeah, I love this charity. I really hope that someday I am in a position to donate some of my income to them, because they are attempting amazing things as well as providing support for families and friends of the afflicted, too.

The charity also does Information Days; they are like little conventions almost, when doctors and nurses and patients and their peers – anyone! – is welcome to come along and learn. My neurosurgeon actually spoke at one of these events recently, and I'm devastated I couldn't go that particular day as I was still pretty deep in post-op recovery. I am so desperate to go to the next one, though. They happen all around, but my local one would most likely be Brighton. 


(Training, on the seafront!)

The Brain Tumour Charity puts on this fantastic event called The Twilight Walk. Or rather, walks plural. They gather together volunteers, all of whom raise money individually or in groups, to walk 10km and raise awareness. The hashtag is #walkwithus, and the T-shirts are the charity's stunning trademark red. I was delighted to have been able to sign up this year, as before I've been too weak to participate. This year though, I am bringing it the hell on. I have trained as best I can with my family, my team, and we have got two of our oldest and dearest friends on board to walk with us on the day. We'll be walking in Windsor, which is such a nice thing as it's near where I was born and lived until I was two, and where I made my first friend (see below, us in the 90s. Updated photo to come). 


My team are raising money for the charity RIGHT HERE, and we are astonished and proud to have reached over £1,200. Please do have a look, my friends, and donate a few pennies if you can manage it. I will thank you with hugs, coffee and general happy brain vibes. 



I will be writing about how the event (today) goes, don't you worry. It will be in a monthly round-up soon! Until then, I am sure photos will be shared on my Twitter and on The Brain Tumour Charity's Twitter. AND their Facebook page, too. 



Wish me luck, guys! 
Let's stamp out brain tumours! 

4 comments

  1. I think it's probably time to remove the "almost" part of your blog title. <3

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    1. Oh, you! Thanks so much. I may keep it a little longer, I don't wanna get ahead of myself...! ;)

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  2. Good luck on the event!

    Mel ★ www.meleaglestone.co.uk

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    1. Thanks, angel. It was amazing! xoxo

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