Thursday, 9 April 2015

Round 2 / The Cyst Gist.

Deciding who to tell first, who to text or who to call first, is like deciding whose day to ruin first. Whose good mood to fuck up quickest. Telling is the worst part, by far. That's why I'm so grateful I can blog. Let the blog tell its readers!
Damn, now I'm feeling horribly sorry for whoever reads this post first. 

'Oh Grace, I have to go in again.'
My lovely neurosurgeon is painfully honest, and I can tell he hates giving bad news, but it comes with his job I suppose. 
'Great.' Is my instinctive response. 
'Not great.' The surgeon almost chuckles at me. 

Right, so here's the background info. 
When I was struggling with some unusual symptoms last year, a loss of motor skills and co-ordination issues, it was a result of a cyst growing and swelling around a tumour in my brain. 
It was a Grade 1 pilocytic astrocytoma - a tumour that if found is usually located at the base of the brain but in my case was lodged firmly and quite deep in the middle of the left hand side of my brain. It had been growing for 10-15 years. It was a pre-disposition at-birth decision; something that was meant to be and always in the making. Nothing could have been done to avoid it - which actually made the whole thing seem less tragic. 

Now, the tumour has been blitzed by a genius and what couldn't be removed remains small and unthreatening up there in my noggin. Excellent. The cyst around it, however, has been growing angrily again over the past two months or so. My balance has been affected, and actually that's about it. I'm walking into things and tripping over, getting slightly dizzy when all I've done is spin around 180 behind the bar... But my handwriting is still on point, I can type with both thumbs, and I'm talking out of both sides of my mouth. My face is still symmetrical. 
It's nowhere near as bad as it was this time last year. Also, I was quicker to get it seen to this time. Last year it was a good four months of crappy childish handwriting and smacking into walls before I even mentioned I was feeling odd. So I've learned to listen to my body, and to report anything unusual no matter how silly I might seem. 

Last time I adopted my most positive attitude. I pumped my fists and I smiled through it all - at least it's just me, it's me, only me, nobody else, just me. If it was anyone else, that wouldn't be okay. But it's just me. I was taking one for the team. I figured a positive attitude was one thing I could control; I could convince people that it was all cool, as long as I was cool. 
I hate giving bad news. I feel responsible for others' reactions - despite being told that I mustn't. People will feel how they feel, it's not my doing. Except it is. My stupid ill health is making everyone sad or mad (or SMAD - thanks, Suki St James). 

I won't be so positive this time, guys. I know I'll be alright, don't get me wrong! I'm in the best hands, I have awesome support, my body will be made to behave. BUT I won't be as gung-ho through it all again. I don't think I can be. I think this time I have to be honest. And honestly? Not fair. That's what I'm feeling. Not fair, not fair, not fair. So totally not fair. Nothing about this is fair. What did I do to deserve this? C'mon, universe. You're meant to have my back... I mean, I feel horrible and guilty yelling through tears 'WHY ME?!' But seriously, why? What did I do?
I've lied, I've cheated, I've stolen - I've punched another human and delighted in his pain. Nothing to warrant a major personal punishment though, surely? Nobody deserves this. I wouldn't wish this on anyone. I wouldn't even want a serial killer who felt no remorse, hated Robin Williams, ate exclusively live baby animals and listened to nothing but 1D to have to go through this. 
My thoughts are so jumbled and ugly right now, I'm sorry. I'm typing this little chunk in the back of the family car, while jamming along to Fleetwood Mac ('Rumours' seems to do the trick right now). I had to get my thoughts down asap. 

I have one month, one week. 15th May - 15/5/15, that's the day we start Round 2. It's mad - some people never go through this even once. Some people break a bone, get their tonsils removed, have a baby - but their brain is never called into question or touched by a scalpel. 
I've never broken a bone. I was one of the few 90s kids who never had their tonsils (I called them my 'stencils') removed. Despite rumours, I've never had a baby...
And yet, this. My first ever operation and overnight stay in a hospital was this! I was very much chucked in the deep end. Luckily, I can swim. 

Anyway, I have a month and a week. I made it clear that I needed my whole April, and the first week of May. I obviously jinxed myself when I made plans more than a week in advance -  when I booked holiday at work, arranged for my boyfriend to visit, bought tickets to see Caitlin Moran's book tour a second time, paid extra to meet Joshua Radin again before seeing him perform live for the sixth time, and excitedly booked to go to London with my best girl and see Carrie Hope Fletcher talk about her new book; I'd also told my oldest friend I'd visit him in Kent soon... Silly me, making plans. 
At least my little trip to Berlin in March wasn't compromised. My first time going abroad since the surgery. I'll admit I had worried right up until the plane took off - the doctors will call, I'm going to have to stay behind, I won't make it... I did, though. I had the best time, and I want to go back. Although I suppose that won't be this summer now, like I'd planned... I won't be doing my MA this September, either. These things have been decided for me. Serves me right for making plans. 

I'm not having my the same life taken from me this time. I'm not having to rush away from Winchester, from my uni friends and my perfect cinema job. I'm not having to move home.
Instead I'm having to abandon my new life. The life I've made for myself out of next to nothing, a mess of ruins I found myself in after the last bout of bad news. I recovered, more or less, I found another (and even more) perfect job, I made the best of my unexpected living situation, I got a gorgeous group of new friends. I've learned new skills, I've learned more about myself, I've made do with what I've got. I've rebuilt. And now that's being taken away, too. 
It may be better this time, because I know what's coming. Then again, for the same reason, it could be so much worse. I think last time I was a little naive and underestimated the amount of physical trauma an operation like this could cause; I also assumed I'd bounce back immediately and there would be no fallout. After all, this was all done to make me better, wasn't it?
I'm trying not to think about being wheeled into the theatre, the horrible time in ITU after the surgery, the nurses constantly asking me what my name is and what the date is, being trapped on a sofa or in a bed taking naps every hour because being awake is just too damn hard, and on top of all that I'll be receiving visitors - good friends and old friends and family friends who want the best for me - and I'll be sat there or lying there or whatever just trying to avoid their eyes and the sad looks on their faces as they process my hideous physical state yet at the same time try so hard not to look. I hope I imagined most of that... 

I feel like last time I was betrayed by my body, the universe checked in and saw what was happening and decided 'we'll sort this. It's not okay. We got this, honey.' And boom, I got through it. However, this time I worry that the cosmic powers will check in again, see the evil is resurfacing, and they'll shrug. 'We sorted it once,' they say, 'That's all you get. This is obviously meant to happen to you. Sorry, honey.' So I'll come off worse this time... Because I'm a lost cause.



So yeah, now you have the gist. The Cyst Gist. I have to be clear: this is the hardest part, sharing the news. The operation will be fine by comparison!
Last time I was overwhelmed with well wishes, kind messages and thoughtful gifts, which surprised me no end and helped me so so much - spurred me on, made me want to get through it all and recover. I would never ask for cards and gifts - save your money, guys! But happy thoughts, positive vibes and well wishes are always welcome. I'll accept those. I'd never ask for more.
*

Things to do before surgery; while I'm still able-bodied and of relatively sound mind...


-- Play a proper game of Ultimate, or at least attend a training session. Fly Hard (plus any and all of their sister teams) can always put a smile on my face, wake my lazy arms up and give my legs a good talking to. Also, I'd like to see some team mates again. 

-- Lose whatever weight I can in prep for the major intake of comfort food while lying on the sofa barely moving for two months. 

-- Properly decorate my bedroom.

-- Perfect every drink I make at work before I get signed off (preferably to Maestro standard, just to prove I can).


-- Enjoy the birthdays! My mum's birthday and my sister's birthday are coming up in my pre-op month. I intend to make the most of the happy days - and maybe go a little nuts with presents. Maybe. 

-- Visit Brighton again.

-- Finally see The Gospel Youth play live (this may well intersect with the previous goal; gotta love Brighton boys). 


-- Cuddle Caitlin Moran. Tell her a witty Feminist anecdote. Then get a photo with her. 

-- Say thank you to Joshua Radin for helping me through every tough time with his tunes. Then get a photo with him. 

-- Get my hair done. Just because a chunk of it is getting shaved off, doesn't mean I can't get it cut and coloured perfectly beforehand! 

-- Take as many selfies as I want. Before long my face will be fat and inflamed, my head will be skewered with staples, my skin will be pasty and every strand of hair will be stuck together with grease and medicinal cream. I don't like my face or my body much now, but I'd better make the most of it before it gets worse. 

-- Go swimming. I haven't been brave enough to swim since my last surgery - even after I was given the okay to submerge my head underwater! - so I really should before that's on the 'banned' list again. 

-- Get very drunk. I have a party booked in on the 25th of this month, and a few gatherings here and there before May 15th, so I'll make the most and say yes to every drink. Because, why not? WINE not?

-- See each and every friend. Because texting them this shitty news hasn't been nice at all, and blogging all the gruesome details won't be much better. I need to talk to my nearest and dearest, face to face. I also need every cuddle I can glean from good friends. 

-- Stock up on films, books and anything else that will amuse me in hospital and on the sofa at home. Take everything Netflix can offer me. Finally spend the Waterstones points I've been saving up. Last time I had real trouble reading in hospital - partly because I was trapped on a ward with cranky crazy old ladies, but mainly because my head just refused to swallow words, or even pick them up off the page. I would read fifty-two pages of Lauren Graham's lovely debut novel, and none of it would stick and sink in. (I knew it couldn't be the reading material - her book was beautiful!)
Anyway, as soon as my brain behaves a little better with books I'll be making my way through the TBR pile I've accumulated over the past year, for sure. 

-- Visit my oldest friend (and perhaps have that Eurovision party we planned, early though as on the 19th I may be in hospital listening to the wacky old chicas singing instead of the Spanish heartthrobs).

-- Vlog a little. I keep meaning to make something of my YouTube channel, even if only a handful of people actually like seeing my face being all animated and chatty. I'd love to see if I can try my hand at making videos; then again, maybe I'm strictly a blog person and my voice only comes across on a page. 

-- Be happy. Just generally. Make every day happy. And maybe a little cheesy.
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