Tuesday, 1 September 2015

CSF: Cerebrospinal Fluid / Cocking Shitty Fiend.

Hello! Who fancies a good old-fashioned brain update? Spoiler alert: it's not the happy ending we're all hoping will come around ASAP, but nor is it another depressing dramatic addition to the never-ending tale... This update is just a little story about an epic annoyance.
I have an ugly lumpy collection of Cerebrospinal Fluid taking up a small but noticeable portion of my face; the top left (my left, your right) side of my forehead is full of goop and can either be hard, tightly swollen, or soft and...wet. That's the only way I can describe it.
It's apparently quite a common result of having a second operation which involved cutting through scar tissue; using the same 'opening', as it were, that was used in the first op. This fluid usually circulates around the brain and the spine, and it's seeped out from its usual residence and gotten itself trapped between my skull and my skin. Stupid fluid, it fancied an adventure and wandered a bit too far afield. Now it's stuck where it shouldn't be and I'm sure it is just as miserable and pissed off as I am.

Every day it's different. Every day it moves itself around differently, or doesn't move at all. It feels different, too. I'll wake up in the morning and because I'll have been lying flat for 7+ hours the fluid will have settled into a rock-hard fat mound high up on my forehead. Then as the day goes on, it's anyone's guess. Sometimes by the time I've sat down with some breakfast the swelling will have softened and the fluid slipped down to around my left eyebrow level, and the left side of my forehead will be flatter than the right side (the normal side). Seriously, it's so creepy when my forehead gets that flat – I can feel all the bones (or rather the artificial stuff they put in there, plus the bones that aren't too happy or settled as they've been shifted about a fair bit) beneath the thin skin, and more importantly the gaps between them. I can push my finger against the skin and it'll pucker and fold, and basically yields then disappears into the holes beneath the skin... I'm not describing it well, I'm aware. It's like when you press a finger onto a water balloon and the rubber gives in a little and you can feel the liquid underneath – well on the plus side, it's a perfect party trick. That and something I realised recently, which is when I chew a deep dimple appears in my temple. I press my teeth down into my jaw, and the dimple appears. I release the pressure, and it vanishes. I also like to jiggle the skin when it's resembling a bag of goo – I make waves!

Yes, it's very entertaining. Yes, it's very annoying. Even a neurosurgeon I saw for a consultation about it said it was a 'very annoying problem', and well he is the expert on these things. It's annoying because it makes my face look fat, but fat in an uneven way. At least the steroids last year which gave me a nasty case of 'moon face' made me look chubby all over. With this fluid I can turn to the side and look like a weird creature. I've had my hair cut so a fringe falls over the offending side of my face, but still in some photos you can tell – I can definitely always tell – that something's not quite right.
Having this stupid sack of moisture in my face only adds to my ever-growing sense that my best years are behind me. Appearance-wise I mean, c'mon some of the best times of my life are nowhere near yet... I hope. I do believe that my prettiest (or generally pretty) years are way in the past now. It was a very tiny window a while after getting the shit kicked out of me (verbally and sometimes physically) for having a thick discoloured 'lesbo crop' in Year 9 (which then grew into a fuzzy bushy 'thunder-cloud' hairstyle in Year 10); no, it was for a while when I resembled Zooey Deschanel with my sturdy block fringe and heavily-lined eyes, then another peak time was when I went ombre and lost a fair bit of weight due to stress and self-loathing in my third year of uni. It was going downhill anyway after I got into my happy relationship and thus stopped caring about my make up and then brought on the 'relationship gut', so when I was carted off for my first operation it just quickened my fall from grace.

Oh, the gathering fluid is also annoying because it's preventing me from starting radiotherapy, and so basically it's stopping me getting on with my life. For two months now the specialists have been saying 'let's give it a few more weeks, wait for it to disperse on its own', and while some people who don't see me that often will say they swear there's been an improvement and it has most definitely shrunk considerably, I am firm in my belief that it's not going anywhere. I've given it all the time the doctors and my surgeon said was required, which was 2-4 months, and nothing. If it were to disperse, where on earth would it go anyway? I like to imagine it would slowly but surely find its way through the skin that so wickedly holds it in, and dissolve into the air around my head as I slept, becoming one with the universe and being truly free... If only.

So a while ago I'd had a consultation booked in with my neurosurgeon in his outpatients clinic but he cancelled it as he basically said I was all well and good in the hands of this new hospital for the time being; the hospital that will be putting me through radiotherapy. That was good news, because it meant no ferrying ourselves to and fro between two hospitals. Then the specialist I'm seeing in this shiny new hospital, the radiotherapy venue, asked me to book in a consultation with my neurosurgeon to discuss this swelling after he saw it a second time and wanted a surgeon's opinion. Typical!
My surgeon was having his well-deserved holiday, so we saw another surgeon whose name I cannot pronounce but who was superbly professional and pro-active and generally a nice person. I'd been told a long time ago that having the CSF sucked out of my head with a needle was ill-advised, and my surgeon would be reluctant to do it because there would be a risk of infection.
This guy, however, heard me say 'I want it sucked out', then listed that as one of a few options (the others being 'leave it' or 'another heavy-duty op to shift some bones')... Then said sucking it out was the best idea. I skipped out of the hospital that day, shouting excitedly about how fantastic it was that something good was finally happening, that everything was slowly but surely being fixed and yeah I won't lie, that soon I might be somewhat pretty again and wouldn't look like a lopsided ogre or the poor misunderstood beast in The Goonies.

Two days later I went to a third hospital, the one that all the surgical folk and nurses have begrudgingly moved to from my perfect first hospital, at 7am, and was put in an operating theatre fully conscious for once to have a syringe stuck into my face. The nurses in the theatre were actually excited to have a conscious and chatty patient lying in a surgical bed; they all smiled at me warmly and made an effort to talk, I even swapped life stories with one lovely Irish gal who actually instinctively grabbed my hand as the needle went in. It was overall a very positive surgical experience. I didn't feel a thing! I even got to see some of the fluid after it was withdrawn. That may sound weird, but bear in mind that I have had a lot of tumour removed in my last two operations and let me tell you, not being able to actually see this evil growth thing that's buggered up my life was torture. My sick curiosity has been so unsatisfied. Anyway, this fluid was hardly worth the trouble it's caused. I had the theory that it would resemble the kind of pee that you take when you've drunk a lot of water – quite clear but with a touch of yellow. My sister insisted it would look like cloudy lemonade. Mum, forever the one with the darkest imagination it seems, pictured water with running lines and smudges of blood through it. My dear friend and neighbour Amo said 'crystal clear' most confidently – and she was right! The surgeon chuckled at me a little when I admitted that I wanted to see the CSF, and obligingly showed me the syringe after he withdrew it from my head. What an anti-climax. It could have easily been tap water. He could have staged the entire procedure, maybe just to make me quit bitching about my swollen head, and filled a syringe up in the sink.
I was next-level happy all day that Thursday. I had a bit of down time after the procedure, a coffee and a nice greasy brekkie in the cafe attached to the Sussex County Hospital (thank you, Mama) then we went home and chilled out for an hour or two. I was texting everyone filling them all in and giving them all the deets. Giving good news is a very rare blessing for me. I'd even posted a photo of myself on Facey B two days before and told all my online friends about my CSF struggles and how they would soon be over – so then when I'd fixed up my face and glammed up my crepe bandage with a silky scarf, I took another couple of photos and told the online world that 'my face is almost perfect once more'. I got over a hundred likes and so many sweet comments, people congratulating me and saying how happy it made them seeing me doing well finally. My heart was almost exploding with joy. Then mum and I trekked up to London to attend an event at Waterstones Piccadilly – the New Day New Normal tour starring three awesome authors: Louise O'Neill, Lisa Williamson and David Levithan. We'd been frantically feasting on each of their recent releases in prep for the talk and the readings they'd be doing.
*****I'll be writing a blog post SOON about my decision to give 'bookstagramming' a try; sharing my love of lit and reading on social media and shoving excellent books and inspirational authors in everyone's faces...so in this blog post I will gush momentously about the books by these three authors, don't you worry!*****
This event was the second amazing thing to happen that day. Some days go by without even one thing! Also the gigantic bandage (styled expertly with hair pins and a scarf, don't forget) was quite a conversation piece. I befriended all three authors (yes, befriended. We're basically besties now) as they signed my books and I bombarded them with brain tales.
It was a magical day.
So imagine my disappointment/rage/heartbreak when I woke up the following morning to see my bandage had slipped off in my sleep, and beneath it, unbeknownst to me...the fluid had returned.
I feel like there's less fluid collected than before, but still. I hate this CSF, and it won't go away.

Now, a week after my failed procedure, my head looks chubby but also deflated. There's no other way to phrase it. The way my bones have settled, or the way the fluid likes to sit, whatever it is I am left looking a teeny bit strange. For the past few days it's stayed on the 'deflated' side, which is good. I haven't woken up with a hard shiny tennis ball on my forehead plus its accompanying headache – which is a major win. I remember when I had to load up on painkillers, anti-nausea drugs and drink some sweet morphine the second I woke up... A half-deflated freaky-looking face is definitely a fantastic alternative.
I'm seeing my original (beloved, ingenious, God-like) neurosurgeon this Thursday 3rd. He'll be discussing my options with me. I hate discussing options. There's no 'I quit, get me a new brain please' option...


*****The one upside? Thursday 3rd is when Louise O'Neill's new book Asking For It is officially released. So before my 1:30pm appointment, I'll whizz into town and grab my copy. I can always read it in the CT scanner waiting room... *****

1 comment

  1. Brave, beautiful like a Disney Princess, your not called amazing Grace for nothing xxxxxx
    #amazingGrace xxxx

    ReplyDelete

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