Monday, 21 September 2015

Upcoming radiotherapy & Little Princesses.

I really should be blogging more these days. I mean, I'm signed off work and I've completed my main 'off work time-killer tasks', e.g. revamp my bedroom and make my way through my To Be Read pile (I did make some progress on that, then decided to celebrate by buying more books. Obviously.)...
  I've been meeting up with as many friends as possible; when I bump into someone and we do that whole awkward dance when they say 'yeah, how are you? We should catch up sometime...' all the while making no concrete plans and waiting until the next bumping-into that will happen some months later – no, I've been snatching up every opportunity so when someone says 'let's catch up soon!' I immediately say 'Okay! Let's do that. When are you free?' I break out the diary and write them in.

  I've also been writing... Not blogging, writing. Oh actually, a teeny bit of blogging for Oh No Not Another Blogger, which is always mega fun as I love the team we've assembled over there, but yes, besides that just some serious writing. I've somehow gone from nothing but creative dead ends and frustration at lack of inspiration – or inspiration that can't be made into anything, which is ten times worse – to suddenly having THREE big ideas for creative projects, all of them on the go (and by that I mean the OpenOffice Writer docs are all open at once) and actually looking...promising.
**Quick shout-out here to the beautiful Bethany Scott! She is the reason one of my funny little projects, a piece of fiction that may someday be worthy of the term 'novel', is under way and beginning to take shape. She has this genius venture she's just brought about which is really a golden ticket of an offer on the table for struggling writers such as myself who have a few ideas here and there for a story but cannot assemble them all together in a proper plot. I've always struggled with plots – I can create characters and get a few scenes and 'moments' written down, a few sub-plots here and there, but no actual overarching plot. Nothing I can make big enough to fill a book. She's helped me so much with that! I adore you, Mrs Scott. I owe you a cuppa and a cuddle, plus a share of the profits if and when I'm published!**

Harvey making sure I write blogs...

So, I've been keeping busy. Keeping busy, and hating the fact that since recovering from my second operation I've been put on the back burner, some kind of silly medical waiting list, just sitting around twiddling my thumbs until the hospital (one of the two I'm usually seen at) call me up and say 'Hey! Congrats! You may have those six gruelling weeks of radiotherapy now! COME ON DOWWWNNN!'
Well, finally my number has been spun on the wheel... Or whatever expression fits with my slight 'game show' metaphor... Basically, I've been told 'yes, we'll kick it off now'.
  Inexplicably the CSF (see previous ranting jargon-filled post) started to dissipate a few days after my unsuccessful sucking operation – it's like it realised after those 2/3 days of confusion post-sucking when it swelled beyond belief that it actually wasn't wanted by the human it had selected to annoy. So the fluid gathered itself, packed its bags and bolted pretty darn quick. I held my breath for two weeks, running my fingers over the suddenly completely flat skin on my forehead and waiting for it to shout 'JUST KIDDING!' and re-inflate again. That didn't happen! It still hasn't happened! It's been three weeks now, and I'm genuinely believing that it's over. The Fluid Phase of my life has ended. So that's pretty fantastical, partly because it means I can stop hiding myself from public view as much and also because now the swelling has vamoosed, and they can fit me with a lovely plastic mask, I can start that delightful six-week course of radiotherapy.
  I genuinely don't think the radiographers, nurses, specialists and everyone in between and above in the pre-radio department at my hospital were prepared for my excitement in my appointments this past week. I was all smiles and totally up for making friends with them; I got called 'adorable' and received nothing but smiles back. I think I've laid the groundwork there to have a mostly agreeable treatment experience... That wasn't what I was aiming for though, of course. It's just an added bonus. No, I was just delighted to finally be getting on with everything. By mid-November, it'll all be over and I'll be able to start getting my life back on track. 

Now, I'm going to lose hair due to radiotherapy. That's what they all say. That's a real shame as there aren't many people who can say they've had two brain operations and managed to keep their hair – I'm in a very happy minority here, surely! My long hair has been a major comfort to me, too. When I had my first lot of surgery, I had my fringe cut the other way around so my parting would cover my hideous scar, and I started wearing my hair down. Constantly. This was new for me, as I'd always tied my hair back before. Nothing extravagant (or interesting or attractive), just a quick ponytail or bun done in under two seconds before rushing out the door to school/college/uni. It was a functional hairstyle, really. That was it.
Wearing my hair down all the time has been so lovely this past year, even when my highlights started growing out (I now get complimented on my 'funky dip-dye style', so I go along with that when really it's just laziness and lack of funds for another colouring with my genius hairdresser). It's felt like I'm properly being myself, as well as not being self-conscious about my scars and heroically sheltering the world from my ugly scalp.
Anyway, the time has come to lose hair. It'll come out in chunks and tufts where the beams zap my head, and my skin beneath the hair may burn a little, too. It sounds pretty unpleasant. I hate that my hair, this comfort I've made for myself, will be taken away from me soon. So I'm beating those evil (yet awesome and hopefully healing) radio vibes to the punch and having a little haircut before I start treatment. What's more, I'm donating the hair I get chopped off by my family hairdresser to a charity – Little Princess Trust, an amazing charitable organisation who make real-hair wigs for little kiddies who suffer from cancer.
  I see a whole lot of young'uns running around the hospital whenever I go in for an appointment – they seem so carefree, and so brave, even though they have probably already been through hell and back with only more to come, and they look like exactly what you'd imagine a very ill child would look like. They totally deserve a full head of hair more than I do.

I set up my JustGiving page one evening, the evening of the day I had my radiotherapy mask fitted and was once again repeatedly surprised by the sight of bald or balding (or bitchin' headscarf-clad) patients calmly wandering around the canteen or sitting sleepily in the waiting rooms or standing patiently in the pharmacy... All these incredible individuals. Wow.
Anyway, the page was set up and went live, I posted a long rambling status and link to it on Facey B, and then suddenly somehow I had raised over a hundred pounds in half an hour. By the time I was getting ready for bed, it was four hundred. And now after six days, I've collected over nine hundred and I'm genuinely amazed that at the rate I'm going, I may hit a thousand in just one week. It seems so crazy. I'm filled with this enormous shiny bubble of happiness that bursts and overflows whenever someone donates. It's a wonderful feeling, doing something that you know will help others – especially people you see every day, like those kiddies in the Royal Marsden hospital.

So my darling readers, here is my JustGiving page and feel free to throw a little dolla my way – but no worries if you can't or even if you just don't want to. I'd never force it on you! 
I think the reason so many gorgeous humans have donated already is because a) I have some bloody perfect friends and family members - even friends of friends and complete strangers have donated too, actually! and b) I've been promising everyone who donates a lifetime supply of hugs and coffee dates. My coffee dates are second to none - not only do I pay (and sometimes make the coffee using my exceptional barista skills), I also take selfies with everyone and post them to social media - which everyone seems to love! I'm sure I'll be writing a post pretty soon about my Coffee Date phenomenon - it deserves a whole post to itself, not a casual mention in a Brain Update post. Oh, no. 

Now, I feel I've updated/rambled enough here. Everyone enjoy your evenings, and days, and weeks, and heck, entire lifetimes. You never know what's right around the corner, or whom... I will post more regularly again now, and make these upcoming posts more coherent and more loyal to just the one subject at a time - less like a drunken/coffee-fuelled spurt of word vomit and one-sided small-talk babbling. That is a promise. 


- Bethany Scott's Fivesquid genius: https://www.fivesquid.com/freelancer/bethanyrscott
- Oh No, Not Another Blogger: http://ohnonotanotherblogger.co.uk/ 

1 comment

  1. Thank you for the shoutout! Although a cut of the profits won't be necessary - all I ask is a fast pass through the queue at Waterstones to get a signed copy of your debut. Also that coffee date ;)

    You should know you've inspired me to start blogging again - it's not ready yet, but will share when it's set up! Lots of love xx

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