Monday, 30 June 2014

Post-Op; the next chapter.


24th April, 2014.
‘So you’ll come off that prescription pill of yours and then return here to see me in a few months. Do you know how long you’ll be staying in Winchester for? I think September would be enough time... Oh also, I’m booking you in for an MRI scan of the brain.’
My stomach flipped, flopped and then fell to my feet. ‘Another... Another MRI? Is that really necessary?’
‘I’m afraid so. You see, this is not normally how a brain tumour presents itself, but just to be sure and eliminate this...’ I swear, the neurologist carried on talking for several minutes about the properties of my gammy arm nerves and the potential links to my brain, but after the t-word escaped I was gone. My vision blurred and a thumping began to resound deep within my ears. I swallowed hard, shook the doctor’s hand and said my temporary goodbyes, then followed Nurse George back down the corridor and onto Pathology. The rest is history. The first person I told was my significant other and his flatmates; I’d repeatedly say ‘I’m sorry your girlfriend is broken’, and once I even uttered ‘who cares? I could have a brain tumour!’ After this blatant attempt at sick humour that failed instantly, tears fell freely. Then I shook myself, and started to believe that it wouldn’t be that bad. The neurologist was just ruling the worst things out. 

I began to watch the doormat for my NHS Hampshire Hospital appointment invitation, which ended up being scheduled for the 27th May. Before I knew it, I was back in that odious machine and watching four doctors through the observation window past my pale knees, tinted blue and clustered together around a computer screen... Pointing dramatically and noticeably, faces crippled with concern, typing information furiously. They found something. My brain revealed its secrets. I sigh with relief, and then am overcome with terror all over again. They finally know what’s wrong, which is wonderful – but it’s going to be something terrible.
Alyson comes to inject me with some fancy natural dye to help them see the blood-flow to the brain. She’s smiling painfully. ‘Make sure you drink a lot of water today to flush this out, dearie!’ She’s so kind. She must feel sorry for me. Her job must be so hard – seeing all forms of atrocious brain developments brought up by the MRI and not being able to tell the scan patients immediately. She’s the first to know everything. Power and pain combined. If I were her, I’d be walking home with heavy shoulders each and every day, hugging my husband and children over and over once I got home and sitting in my armchair for hours sipping red wine and watching American sitcoms from the simpler times of the nineties.

As I’m pulling off my enormous blue hospital gown in the cubicles opposite the MRI room, reattaching my many earrings and slipping back into my silver Vans trainers, I’m pondering the day ahead. I’m surely about to get some mildly life-changing news, within the next twenty-four hours. You know what’ll help my mood in the meantime? Hours upon hours spent wandering freely around London, possibly taking further advantage of my overdraft, before meeting up with family and friends for drinks in a Greenwich pub in the evening.



5th June, 2014.
Well, here we are. My own little room, an hour from home, the night before everything changes.
As we were driving out onto the main road, we saw some neighbours turning into our lane. They waved vigorously and made praying gestures, blew kisses and gave us thumbs-up. I could only smile weakly back.
Why am I in a private room the night before the surgery, and then afterwards I’ll be moved to the busier non-private ward? Hospital logic is odd at times. Having said that, in my twenty years I’ve never spent much time in hospitals. My sister broke her collarbone aged four after falling from her chair at the dining table, and I listened to her screaming in the X-Ray room as I sat awkwardly outside with my bedtime doll. We spent approximately six hours waiting around, that time. Then in my second year of university, at what was arguably the lowest point in my life, I had to sit alone in A&E waiting on a free doctor to take a look at my wrist, which I’d fallen on the night before when I slipped on black ice after a brutal argument. That led to maybe the worst revelations and most pointless upset I’d ever experienced. I developed a hatred for hospitals from that moment onwards. This situation isn’t helping.

I fall asleep suddenly after lying foetal and obsessing over the fact that I’ll never tire tonight.

6th June, 2014.
Suddenly it’s morning. My surgery is scheduled in at 8:30am, so my parents should be here soon after spending the night at the basic hotel across the road.
Marilyn (‘Maz, please dear!’) comes in to cuddle me as I sit, my fragile little form swathed in a gown that’s come undone at the back minutes after I tied it on. I've just showered in the pitifully chilly little breeze block, turning the heat all the way on with very minor changes, and I’m shivering still. That is, until this hug warms me back up again. Maz is my star. She doesn’t even know me, yet she could just feel the inexplicable pull down the hospital corridor into my little private room where I’d actually fallen asleep at 11:38pm with the bedside lamp on, waiting for the mysterious doctor Seb to come and approve the plan for me to spend the night after being tested that I’m not allergic to anaesthesia. Anaesthesia, a word I cannot even spell and yet tomorrow I’ll be injected with enough of this drug to send me far far away, under the sea and back again within minutes.

I have a pink arrow drawn on my neck. One, it’s a bright flaming pink, which is hysterical. Two, it’s genuinely there to remind the doctor what side of my head he’s digging into and fixing. He assures me he’s never experienced a ‘whoops, wrong side!’ moment while operating on someone before, but it’s always good to have this ‘just in case’. No need to panic, though. Sorry, what? Can I giggle at this, or...?

They’re wheeling me in. It’s like a TV show up in here. I have several plastic things inserted through my wrists or my hands and my blood pressure has been taken several times already since I woke up; I’m good to go. I’m being wheeled. I’m staring upwards at the florescent lights, they’re moving quickly and leaving green splodges on my inner eyelids, as I head out of my little room and towards the theatre. How exciting. I do love the theatre. My surgeon was curious as to what kind of actress I was – he even seemed impressed upon hearing about my Shakespeare adventures at the Theatre Royal, Winchester. He noted that I’m a writer, that Creative Writing is my preferred side of my combined honours degree and that I’m hoping it will lead me into a career, so it’s fairly important that my brain is in tip top shape and my hands are able to type or just write observations in notebooks, which the tumour has stopped happening for too long now.
Anyway, I’m being wheeled. All I can think is how sorry I feel for my parents, having to see this. This, their eldest child being helplessly driven into a horror-movie scene, about to have her scalp cut into, her mind played with and a disgusting lumpy imposter blasted and drained of its sickeningly excitable exuberance. I try to think of something to say now, something with enough mind-blowing silence-bringing power to resonate for decades in my family’s ears; I need an epic goodbye here, something cheerful and light-hearted to say to my folks so they’ll stay positive for the next few hours I’ll be under... However, all I can think of is... ‘See you later, guys! Fingers crossed!’ My parents grip tightly onto each other in the doorway as I’m pushed through for my inundation of blackout-bringing drugs. They’ve squeezed my hands multiple times, to reaffirm the strength I’m lacking. My heroes.
Then they’re gone. The doors are shut. No going back.
I’m so nervous about the most ridiculous event that is about to happen. (TMI alert!) They will be inserting a plastic tube type item into my ‘down there’ area, so I can unconsciously urinate during my op and for a couple of days afterwards. I wish I’d known about this before I came to the hospital – I could’ve made my ‘down there’ a little prettier...

‘Okay Grace, I’m just about to inject you here in your left hand, you’ll be off soon!’ Oh the general anaesthetic administrator man – the hilariously named Bacon. He’s such a sweetheart.
‘Fabulous!’ I’m sounding so enthused. I’m terrified, and the nurses look way too sympathetic. As if they know. They see right through me. I wonder for the twelfth time – will they hear my thoughts? Is that a thing? When my neurosurgeon removes the jaw bone, or rather casually ‘slips it out’ for just a few hours, to get to the right part of my brain of course, no big deal... Will my thoughts and memories just spill out onto the scalpel and pool on the theatre floor?
‘By the way Grace, what is that accent of yours?’ Bacon smiles as he loads a needle.
‘Sorry? Oh, you noticed that, huh?’ I almost laugh. Now surely isn’t the time to ask about my background – unless he’s attempting to distract me by making me talk about myself. Clever fella.
‘Well, my mum is Australian. She’s been over here for twenty-something years, but she’s still got her native accent and I inherited a lot of it growing up around her. There are certain words I say wrong.’ I notice my words are slipping a little between my mind and my mouth. I push on. ‘I’ve been out there quite a few times. Seven, I believe.’
‘I used to live there!’ He tells me a little about his stomping ground, which stupidly slips my cured mind now. ‘Are you thinking of Aussie beaches right now? Maybe that’s best. Relaxing.’
‘My family friends live in Coff’s Harbour.’ I close my eyes part way and smile fondly at the unexpected memory. ‘They have a gorgeous house that backs onto a trail to... Diggers Beach.’
‘Diggers? Is that your favourite?’
‘Yuh-huh. Definitely...’
And then I was gone, with the rockeries and waves from Diggers circling around my head as I enter the abyss. I must have been like every other patient, lured into conversation and then falling under before too long. Out like a light, predictable as can be.

My parents are in the cute little hospital garden, just beyond the ward and the conservatory where the TV is blaring, playing some cooking programme and some nutty older women are wandering about with post-biopsy dressings adorning their hairlines. Team Latter have been waiting quite a while now. Mama L is updating Facey B, having been given my password to use responsibly for updating my friends as well as hers. Dad is emailing his colleagues and the big-hearted heads of departments who are concerned for him – the wonderful suited and booted London geniuses who responded to his initial email about my t-word by saying ‘we’ll see you when we see you! Go!’ They even divided up his workload between them. Selfless suit-wearing superheroes, in their immaculate and fancy London building – I must visit them when I’m back to my old self. If that ever happens. Actually, I very much doubt I’ll ever return to my old self. I’ll forever be changed by all this. Sorry, I’ll save the deep talk for a little later on – right now, I need to relay the facts and figures. The aches and the relief.

My parents have been told that it was ‘good news’ if it took a while in the theatre. Any time taken over four or five hours is a good thing. If I come out after three hours, chances are my genius surgeon has had some unexpected trouble removing the tumour and he’s decided against it. He’ll have to find another approach. Like, leaving the gigantic ugly cist and the adjoined white lump and respecting their desires to mess with my mind and my limbs until eventually my brain stem can’t take the pressure any longer and gives up. They pass the three hour mark. Then the six. Somehow then it’s the eight. Status updates are happening, while my sister patiently sits through a compulsory GCSE Maths revision session in my old school.

My foot is being shaken repeatedly. ‘Grace, Grace?’ I’m hearing in a velvety tone, underlying urgency causing me to open my eyes ever so slightly. How long have they been closed? The questions I must ask rise fast in my throat, and yet can’t escape my lips. My left eye is sealed shut – I want to feel it with my fingers, but I can barely muster the strength to lift my hand. The more awake I become, the faster I assess what feels different. For example, there’s a plastic tube touching my inner thigh and reaching up my ‘down there’. I can deal with that, although the thought isn’t cute. The left side of my head – my forehead and my cheek, too, actually – it’s totally numb. Is that normal? Will the feeling ever return? It better. I want to be normal. That last thought surprises me, because it’s so naive and so true all at the same time.
‘Grace?’ The nurse looks impatient now. I frown as best I can at present and then stop immediately because it’s uncomfortable and too much effort.
‘Yes, how long has it been?’ I mumble, my head buzzing slightly as my voice escapes. I sound the same, even if I don’t feel it.

I’m moved straight into the ITU (probably better known as it formerly was, the ICU), and after about an hour or so of just lying in there with my eyes closed, concentrating mainly on breathing steadily and remembering where I am and why, I hear a voice a little way away.
‘Grace?’ That’s not the nurse. My parents are here. Now would be a wonderful time to open my eyes wide, sit up and give out hugs aplenty, thank them profusely for being here and having waited for goodness knows how long for me to emerge, tumour-free hopefully. In my mind, I do. On the outside, I just can’t. All I can do is squeeze their hands – and I swear I’m doing it with my right hand, the one that wasn’t working before... I can’t be sure. This must be a parent’s nightmare – I look appalling, shiny-faced with tubes coming out of every vein and orifice, a hospital gown clinging to my upper arms and random white stickers dotted all over my exposed skin. The whole left side of my face is hideously swollen. I’m clinging on to the comfort of these two voices. They’re telling me I’m alright. I feel a single tear slip out my right eye and travel down my cheek. Dad notices. I hope they get a message from that, as it’s all I can manage.


7th June, 2014.
My neurosurgeon, also known as my personal miracle man with the steadiest and most trustworthy hands in my entire world, stopped by the day after the surgery in his jeans and a tee to ask how I was doing. He said he wanted to observe my day-after MRI scan and use the images they got of my post-op brain as a ‘Sat-Nav’ to see how much smaller the tumour had become. As this was so soon after the brain-digging, and I’d spent the night in the ITU, I was weak beyond belief and only half-conscious of what was happening to me. My useless limp body was flopped from side to side, from wheeled ITU bed to machine, the doctors making a big deal of counting down from three as they all shifted my dead weight... I tried not to over-think that. Mr B showed my parents my fixed brain on the screen as I lay trying to nap in the scanner.

Miracle Man visited me many times after that, and seeing his knowledgeable face approach down the ward was always a pleasant surprise. The whole ‘he saved my life the other day’ feeling would smack me on my stitched-up head. He’d ask how I was, how much sleep I’d been having and if I felt more myself...I would have felt far too pathetic complaining about the headaches that were cropping up first thing in the morning, or saying how sleepy I’d been all the time. Instead, I pressed some buttons on my remote so I rose higher in my bed, sat as straight-backed as I possibly could without crumbling under the pressure, and almost bellowed ‘I’m wonderful! So so good, oh my goodness. How are you, though?’ He smiled, surprised. He checked up on me, going over a few things such as blood pressure and hand squeezing – I remember, and may never forget, when he remarked to my parents: ‘have you felt her squeeze your hand? She’ll write again.’

Hospital food is basic, but better than expected. I got to choose my vegetarian dishes from an extensive menu that the nurses bring me – and they always seemed to wake me up from my deepest naps to eat them. The exception being that I’d always have breakfast at 5am, after a sleepless night, when I was at my grumpiest. On my first fully-conscious sitting-up day, I ordered two slices of toast. The caring caterers dished it up in the conservatory and the nurse brought it to my bed, placing it on the table beside my parents. Dad offered to feed me the toast, as I still couldn’t even raise a hand. I nodded sheepishly, with a ‘yes please’. For the next fifteen minutes or so, slices of toast were being pulled into smaller pieces and brought to my lips. Chewing was a massive task; it required maximum concentration and quite exaggerated jaw movements that caused some painfully audible bone-clicking. The next day, Dad helped with my lacklustre vegetable hotpot. I felt the need to apologise to him for having to spoon-feed me as though I was a little child all over again, but he replied a little misty-eyed with ‘It’s the most satisfying thing I’ve done.’

All the nurses were gorgeous – all slim and bright-eyed, elegantly shaped and neat-haired, at least two were Irish and all OTT-friendly. They were never too far away, and they understood my ultimate need for tea. Several of them told me about their other halves, which of course meant I then told a couple of my nurses about my boyfriend; shared a couple of funny stories and explained that he is a bartender, barista and musician, so obviously I was always going to fall head over heels. The nurses giggled and gasped in all the right places, and I wondered if they enjoyed the fact that I may be their first twenty year-old patient in quite some time. Apparently getting a brain tumour doesn’t happen very often between the ages of fifteen and fifty. 
I'm just lucky, I suppose.

I couldn’t be more thrilled to have been moved from my dead silent private room to the six-bedded ward. Either side of me I have some incredibly strong and in some cases ancient aged and purely insane patients – women who have been told the same hideous news as myself, that they have a creature living within their brain, a t-word if you will, affecting their bodies and limiting their livelihoods. I can feel their tumultuous existences being tested and them fighting back, just like I am, despite the fact that most of them were born in the 1930s.
I’m woken every hour in the night the first time I spend twenty-four hours in the ward, by these patients’ worrying rambles and violent outbursts. Then every couple of hours during the day the nurses need to ask me the same three things, so my naps are often cut short, too.

‘Grace, can you tell me where you are? And your full name? And your date of birth? Excellent. How’s the pain? Out of ten, ten being the worst?’
‘Headache is at a solid three. Point five. Or four, really... Don’t worry, though. I’ll be alright.’
I didn’t want the nurses to worry about me. I wanted to be their star patient, and the ‘quiet one’ who just napped in her bed and was always sympathetic as they reassure the crazier ward members. Like the woman who wailed every hour in the night; ‘get off me! I want to go HOME, you hear me? HOME HOME HOOOMMMEEE. Where are my children? Give them back to me NOWWWW, do you even know whoo---? Zzzzz.’

Time is a relative complex. Sure, we'll all agree and saunter off on the basic understanding that sometimes the difference between a slice of toast being browned perfectly and an accurate scientific message being replayed correctly over an alternate-sized explosion, but basically the two can overlap. Sometimes. For different alternative universes.
This would be a little segment of this blog post that I penned while unable to sleep in the ward one night. Twenty minutes was always the amount of time that would pass while I had my eyes shut and was willing myself to think relaxing thoughts to drift off to self-induced unconsciousness. I almost longed for another sweet nine-hour hit of anaesthesia, just to give me a helping hand... I’d open my eyes time and time again to check the clock down the ward. The mocking clock, laughing at me during the four or five short hours when it was perfectly dark outside and I was unable to take advantage before it became 4:32am and it was brighter than anything once more.
My brain was clearly still a little under the weather from the op, muddled thanks to the twenty-odd drugs I was shotting from a little plastic cup every few hours, and suffering due to the lack of shuteye, because what I was attempting to get across in that odd little blog draft was the slowness of time and the way it would speed up every now and again without an explanation, but crawled painfully in this ward at night – well, I didn’t get that across very well now, did I? Poor brain, with the jumble of thoughts surfacing at night that varied from ‘I should go out for dinner ASAP with those Sparkford girls, and the one from Cromwell Road, we’d have the best time and get tipsy off wine no doubt...’ to ‘How am I still me? My personality hasn’t changed at all after that op... I’m still myself and that’s just baffling, man...’

I was also writing a little commentary on the other patients in the ward – the older women who were all at different stages of the pre-op post-biopsy road-to-recovery saga...
It is now 01:52am and I, myself, just personally lying in a dark neurological hospital ward in Hayward's Heath will say that this is a totally normal time for me to be experiencing intense insomnia and irreversible anxiety right here, at this moment. However, the elderly woman besides me snuggled up under her coat and threadbare blankets is snoring away, not at all frightened or losing sleep over the fact that tomorrow she is precisely scheduled in at 8:15am to have her thought-makers delved into.
That's behind me; thank Heavens.

10th June, 2014.
My grandparents and auntie on my Dad’s side came to visit a couple of days later. It was my grandma’s seventy-fifth birthday, and my sister had baked a gluten-free raspberry cake for us all to share in the conservatory with some tea the nurses were delightful enough to brew. My parents arrived first, to spend a little time with me before the modest party started. Mum passed me a birthday card and a pen, saying ‘just sign your name and write a little Happy Birthday message for Grandma, if you don’t mind.’ I took the card and leant on a magazine, writing ‘Dear Grandma, Happy 75th Birthday! Have a magical day – I’m so glad you’re coming to visit me, and we’ll have the loveliest time. Lots of love, Grace. xxx’ I passed the card back to my parents, and then paused. I suddenly stared downwards at my right hand, at the fingers that had just executed what was once an impossible task. I’d written something. Handwritten. My right hand had been cured. Mr B had somehow fixed it, no problem at all.
I don’t know what I was expecting. Maybe I had assumed that my dexterity was due to be worked on and built back up again; maybe my Facebook sister and ingenious physiotherapist bestie would be giving me exercises to undertake if I wanted my hands to behave accordingly again... I’d be up for that. Regularly popping into Winchester hospital to work on these things. Yet, no. I was already well on my way to being normal again. All it took was a slicing of the head and a digging around for a t-word, a playing with a 1-2% chance that I could pass away, or a 5% chance that I’d fall into a stroke and be paralysed on my right hand side for the rest of my days. Twenty-two ugly metal staples in my skull and some bits of blue fluff that protruded from my scalp. That was all. The recipe for ordinary.

Now, let’s talk drugs. I mean, the legitimate prescribed kind, not the classic student pickup in the park at 2am kind. For approximately four years, the only prescription pill I’d been put on was an oral contraceptive. I also spent a silly amount of money I never had on daily vitamins that I’d take after my cereal and before my coffee. I had some regular antibiotics when I suffered from several bouts of tonsillitis, as well as gallons of ice cream. I’d take the occasional pair of painkillers to settle a beastly hangover (often on a Thursday morning) over the past three years, or some Migraleve tablets to cure that migraine blindness, but never anything remotely interesting to alleviate any other symptoms or pains. Never anything serious.
However, after seeing a doctor about my gammy arm he’d prescribed me some sedatives to stop the symptoms, but warned me that I’d be drowsy so it was best to take them before bed. Then for the entire time I was in hospital, I was relying on a cocktail of pills in tiny cups and liquid morphine in plastic syringes being squirted into my mouth, plus anti-nausea injections in my stomach that left bright purple bruises. I’d had anti-inflammatory drugs to reduce the swelling in my brain, steroids to make my face nice and fat, plus some anti-convulsive medication to combat seizures. Dexamethasone, Clonazepam, Levetiracetam. Then several more pills to counteract the nauseating effects the more serious drugs might have. Ondansetron, Ibuprofen, Omeprazole, Paracetamol.
So I’d made up for all those years of boring pills or lack of prescriptions and then some. Now I’m on regular painkillers, the ones that are 49p in a supermarket, because my head is still not quite over all this drama. Maybe it misses the little roommate...

My support nurse, the Neuro Nurse Specialist who advises on aftercare etc., is yet another kind attentive soul with cropped blonde hair and sparkly eyes behind colourful glasses. She seemed amazed that I’d finished my degree before the op. She was explaining how her daughter studied at my university ten or so years ago, a Drama degree, only now to be part of the Met police.
Super-Nurse seemed concerned about my negative skin reaction to my anti-convulsive medication; after years of being spot-free and fresh-faced, I am suddenly a spotty freak. Across my chest and up my neck are some ugly adult acne marks and a few white-headed pimples, they sprang up overnight in the hospital and I couldn’t fight them off. My clear skin and my orthodontist-engineered straight teeth are two of the limited plus points that I have when it comes to my appearance – so now I’m scrubbing extra hard in the shower with my Ocean Salt facial wash from Lush which has ingredients such as vodka-soaked limes and sea spray that guarantee fresh skin once again, and then coating myself in my spot gel and Aloe Vera potion just for good measure. I wake up every morning and catch sight of myself in the mirror and more often than not, I’m disappointed. My face swells overnight on one side, the op side, and I just don’t look like myself nowadays. It’s immensely frustrating. She sees that. She suggested a few things I could do, and some other nurses recommended antihistamines to calm things down. Super-Nurse was most sympathetic over the phone one day, and then before saying goodbye she suddenly said: ‘By the way Grace, do you know a lady called..?’ I was taken aback for a moment when she uttered the name of one of my lecturers. ‘Yes! She’s been one of my main Creative Writing lecturers for the past three years at uni. How come?’
‘She’s my sister!’
This world, guys. Miniscule.

17th June, 2014.
I’m lying in bed at 10:30am, putting off getting up, when I hear the phone ring and Dad answers it in the study next door. I very briefly wonder who it could be; grandparents most likely, or family friends wanting to know how we all are and when they can visit. Soon, I hope. I roll over and face the wall, desperate to doze some more.
Today is going to be good. I’m debating attempting to apply makeup for the first time since the op. Why? Because my boyfriend is coming to visit this evening, and never mind the fact that he’s seen me first thing in the morning before I shower when I have bed-hair and askew pyjamas, or after work with bags under my eyes, laddered tights and stinking of popcorn... I need to look the best I can.
Suddenly I notice the seriousness in Dad’s voice as he talks on the phone. The long pauses after he speaks. Later, I learn that it was the hospital. I have to go back. 4pm today, my surgeon wants to see me. The results are back. They know more about my tumour.
Apparently, when the hospital calls and tells you the appointment time, you drop everything and cancel every potential plan. I understand this totally, but when it means my parents are telling that lovely boy not to get on the train after he finishes work and that we may have to postpone his visit altogether, it’s not okay. I sat in the living room with my arms crossed, cheeks flushed and tears welling up, shouting at my parents about how unfair everything was. Mum and Dad then tried to explain that it’s just in case we get the worst news. The worst news here meaning the c-word – the only thing worse than the t-word.
The hour-long car journey to the hospital is painful to say the least. I’m uncomfortably positioned with a pillow in the passenger seat, Mum’s in the back, Dad’s driving. Both parents are pale. We’re all silent. My sister is staying with the neighbours for the afternoon as she apparently wasn’t allowed to come and hear the news, in case it was bad.
The idea of being told I have cancer crosses my mind as we slowly make our way up my hometown high street. This is the first time I have allowed myself to consider the c-word. I wonder how I’d react to my life-saving surgeon telling me this devastating news. Judging from my response when I first met him and he was frankly discussing the threat of the tumour and the risks of the operation – ‘no problem’, ‘okay, that’s cool’, ‘awesome’ – whatever I said I’d be smiling bravely as I was back then. I’d wait until I was out of the building before I cried.
I banish the c-word again as quickly as it had appeared, and try to sleep in the car. Upon arriving at the hospital, I see the entrance and instantly feel sick. My legs are about to give way at any moment as we enter the reception; they instantly recognise us and point us down the corridor, where the Super Nurse is waiting. She ushers us into the conservatory, where the resident crazy lady can still be found watching the blaring blurry TV, and then calls us when Mr B is ready in the ‘Quiet Room’. That sounds ominous.
We shake hands with Miracle Man and sit tentatively around the coffee table. The windows behind him look out onto the garden, and my former next-bed neighbour in the ward catches my eye, walking in circles with her husband before sitting on the patio and drinking cups of tea. I wonder if she would recognise me. She has dressing stuck to her white wispy hair – she’s post-op now.
The neurosurgeon is asking about the visible breakouts on my skin, and saying I should come off my anti-convulsive meds. There will be more danger of a seizure, but he isn’t worried. My parents are sitting on the edges of their chairs; Dad’s clinging on to the wooden arms, Mum’s got her hands clasped together in her lap, I’m trying to stay upright and staring hard at Mr B, trying to read the report in his eyes before it comes out of his mouth.
‘The histology is good,’ he says sincerely. We all exhale heavily and sink down in our seats. I’m suddenly exhausted beyond belief, and my parents have tears in their eyes. He goes on to tell us the actual name for the tumour, a pilocytic astrocytoma, and that it’s low-grade and slow-growing.  If the most non-threatening is rated 1, and the worst is a 4, I’m safely at 1. The parents say thank you several times through tears, while I’m just sat smiling, thinking of this wonderful information I now get to pass on to my panicked friends – and my stressed sister! As soon as the doctor and the nurse leave the room, I called my sister and she squeal-cheered down the phone. Then I called my boyfriend, and tell him to get on that train. Then I called my college bestie. When we eventually set off home, Mum was sat in the back seat texting everyone and calling out the replies she received; Dad had a stronger grip on the wheel and was making jokes; I was suggesting we celebrate with a takeaway from our favourite local Indian restaurant – the same one we’d been in with a treasured friend just after I found out about the mysterious ‘growth’ – and texting the boyfriend as he was on his train to me. We were almost normal again.

I’m so happy the neurosurgeon got to deliver this positive conclusion to us. After all, he had dropped some major bombs during our first meeting. Like the fact that the growth was indeed a tumour; he didn’t know exactly what it was made from; he couldn’t necessarily remove it all... The most shocking was that the growth was as he described ‘A pre-disposition at birth.’ Something that was decided when I first appeared in the world – or maybe some time at primary school during lunch break, when I was crushing on a boy at fourteen, or eating my breakfast before my 7:20am train to college, who knows? This t-word wasn’t genetic; I didn’t grow it because someone else has several generations ago, it’s all down to me. Nice work, me. I always thought my brain was on my side. It somehow got me a glorious 73% grade on my dissertation (or rather Extended Creative Project/ECP), which counted for 20% of my whole Undergraduate degree – and I never thought to mention my gammy arm and non-writing hand to my markers, or ask for an extension due to bad health... I also scored more than my fair share of 60+ per cent grades throughout my three years, and a generous handful of beautiful 70+ grades that were often celebrated with multiple beverages at 11:30am. Turns out my brain was always biding its time and waiting to surprise me. With a hideous pilocytic astrocytoma, apparently.
After the operation, the super surgeon told us what he’d found was indeed substantial in size and took more time to remove than he’d thought. He threw in some more explosive facts, three of which stuck with me and I’m never likely to forget them...

1. At one point during the op, he was a fraction of a millimetre away from my brain stem, meaning if he’d slipped even slightly with the tools then at this moment in time my only means of communication would be blinking my eyelids. I have so much love for those steady hands of his.

2. This surgery he performed on me was ‘by far one of the most challenging procedures a neurosurgeon can perform’... As he said this, the registrar Ms F (very business chic blonde woman with stunning piercing blue eyes, very honest-looking) just sat beside him nodding energetically in enormous agreement.

3. I have had the tumour for ten years at least. Could be fifteen. He’s not sure, but he knows it’s been brewing for a decade – and only now, with my undergraduate degree safely behind me but only just, now I’m twice the age I would have been when it first appeared, it decided to start swelling and affecting my body enough for me to question it. Just, wow.

There are people in my life who have never known me without an alien lump growing happily inside my head. There are people who have asked how I’m doing, or if I need help with anything; questionnaires have asked about my general health, or where my mental state is at the moment – and I have had an impressive answer for half my life, if not more, and yet I never knew. I keep wondering if I should be sad that this hideous growth has been removed, because after all, it’s been a huge part of my existence for who knows how long now. It’s been part of me, whether I’ve liked it or not. Maybe it’s the reason I failed my driving theory test first time, or why I fancied the most laddish Hollister-clad fool at college, or the thing to blame for the nights when I was inexplicably a lightweight all of a sudden, feeling my inhibitions fall away after two pints of cider. If this is the case, I won’t miss it at all. Maybe, however, it’s what made me brave and confident on these rare occasions; it made me apply for Head Girl at my high school, take part in Go Ape! with friends, tell a clueless guy that I loved him while falling asleep in a tent, and write a piece of fiction for my Extended Creative Project that was inspired by personal, at times unpleasant and ultimately true events in my own life. I could easily be thanking it.
I maybe should say a quick thank you to the lump, because if it hadn’t come about then I wouldn’t be where I am now – sitting happily on the sofa in my family home, typing away and looking up to see a mantelpiece covered in cards, the floor beneath packed out with flowers and presents, the windowsill at the back of the lounge room boasting an even bigger collection of well-wishing love-sending mementos, handwriting I either know all too well or that I’d never seen before, all meaning so much I can’t even express it in words or say thank you with enough sincerity or enthusiasm – or at least without choking on my happy tears, which are pretty much constant nowadays. I’ve never felt so in touch with my feelings, which is a stupid sentence but it’s true, and it’s all thanks to this awful thing.


I will never comprehend how many people in my life reached out to me, sent me a Facebook message or a tweet, dedicated an Instagram post, baked me cakes or brownies, or went out specifically to buy me a card or order flowers – I even received two Moonpig cards, which require more effort than I’m worth surely, yet here they are, sitting across the coffee table from me in pride of place. My Ultimate team sent a massive card filled with kind words, and a team photo – I will always be on that team, and one of my biggest complaints about my ‘gammy arm’ was that not only could I not write, but I could not throw a disc any more, not to save my life. As a result I was missing training sessions and socials because I felt like such a failure and a waste of a player. My colleagues at the prestigious quirk-filled Everyman cinema sent a whole host of goodies in a huge parcel – make sure you check out the literally amazing ‘Amazing Grace’ picture in the right margin, it’s just an idea of how immensely talented my colleague is – and the two cards signed by my co-workers put the biggest smile on my face. Not to get too mushy here, but I’m so lucky to actually love the place where I work and get along with all the people I work with. That’s rare, trust me.
The lovely librarian from my high school, the mother of two talented friends of mine, popped in and bequeathed a Minnie Mouse-shaped Malteaser tree unto me, while I was having coffee with one of my favourite friends and her fantastic mum. My boyfriend was also sitting next to me, and with all this amazing company I was feeling inconceivably lucky for the millionth time since waking up after my operation. Just having friends come to visit, friends who’ve taken the time to jump on a train to my town or drive all the way to my humble abode just for a few hours chatting with me and seeing how I’m doing is the sweetest, most caring thing... Having cups of coffee or green tea, sharing baked goods and swapping gossip; I am constantly blown away by my friends’ ability to listen to my ridiculous Tumour Tale and their genuine wanting to hear me ramble about how things have been lately, before they respond to my pestering and tell me the latest updates in their own lives. I’ve been deprived of new information for too long, damn it. I need to be kept up to date. Anyway, it’s that much easier to get out of bed in the morning when I know I have some lovely coffee companions due in a few hours, or some champagne is to be shared in the evening. Plus, getting out of bed each morning means that I’ll go downstairs and once again be greeted with this incredible array of love and best wishes in card and present form... It’s overwhelming and instantly puts the cheesiest grin on my face – which is nice, because I always go through a difficult range of emotions after waking up in the morning.

Since coming home from hospital, I’ve been waking up late – the earliest has been 9:30am, and the latest 11:05 – getting out of bed painfully slowly due to headaches or leg pains, and instantly catching sight of myself in my full-length bedroom mirror, and being disappointed that I don’t look like me. More often than not, I look like a hospital patient – maybe a recent hospital leaver at best. For ages my face was still not quite right, still swollen in places and my left eye always less than bright at the beginning of the day. My hair, however, is no longer lacklustre and matted, no longer parted to show my ugly operation scar and the spiky shaved hair that grows around it, which has made a big difference. My parents’ hairdresser offered me a free hair session as a post-op gift; she is definitely one of the most generous individuals I have encountered. She coloured the lower half of my hair as unfortunately the top section can’t be coloured for several weeks ‘just in case’, trimmed some length off and changed my parting in my fringe so it covers my 22-staple scars perfectly. I got a new lease of life from this – I started wearing makeup again and actually making an effort choosing my clothes each day. I also managed to take a ‘selfie’ that I was mildly happy with, which I then posted onto Facebook as a tentative update on how I’m doing. One hundred and seventy likes later, I’m speechless once again.
Social media has redeemed itself recently. After a couple of years of having to hide certain silly stories on my News Feed, unfollow inane tweeters, delete ignorant or heartbreaking online friends, block creepy blokes and shameless spamming chicks on Instagram – the warm fuzzy feelings I’ve received from all these outlets have restored my faith and brought the happy tears time and time again. People’s concern, encouragement, positive thoughts and prayers have all come across so beautifully and I don’t think I’ve ever felt anything like it. Needless to say, a few times in the days after my operation I was lying in my hospital bed contemplating going for a walk up and down the corridor or just closing my eyes and forgetting the world for a while longer – I’d summon up the strength to check my inbox and the social apps on my phone with limited 3G, and find the motivation I needed to swing my legs out and put my feet on the floor. Saying ‘thank you’ will never be enough, but I’ll still be saying it forever.

It’s over three weeks on now, and my goodness it doesn’t feel it, but at the same time it really does. I’m sitting here on my childhood home’s sofa, in my usual spot where I’ve been making a groove for myself for quite some time. I have my laptop on my lap, burning my thighs under my blue maxi skirt that I happily purchased with the last tenner of my overdraft in Middlesborough way back when. I put off logging onto my laptop for quite some time, and I’m not sure why. I think I was afraid there was some inaccuracy in my neurosurgeon’s prophecy that my hands would be stronger than ever – my motor skills would be formidable once more; I’d be touch-typing once again and pretty soon unable to recall when exactly I lost the ability to and regressed to an infant school pupil pushing wooden beads on a fake abacus. One evening recently my family were sitting watching ‘Easy A’, and I was tap-tapping on my keyboard amazed at all the noise I was making with my fully functional fingers and my hunt ‘n’ peck typing. After months of only being able to update my status, tweet and blog via my iPhone 4 with my left hand, which was being abused to the point that I had a deep groove in my left little finger where I’d been resting the device... I was on Blogger and checking up on my page views as if I was back in first year blogging every evening about my petty love life and seeing where my audience were visiting from in the world and via which internet providers, and also waffling an essay for my ridiculous Reading Theatre lecture the following morning. In that moment, I was suddenly overwhelmingly afraid of the fact that someday I may take my typing for granted. I may live in a little apartment with a gorgeous glass computer desk upon which I had a state-of-the-art Mac with a super-skinny keyboard and I may well be procrastinating from writing my hard-hitting column for a newspaper or a light-hearted article for a magazine – I’ll make sure that if that ever happens, there would always be some way of reminding myself that once upon a time I was suffering from a gammy arm and had no way of writing my feelings down besides using my left hand painfully slowly and making multiple spelling errors as I attempted to do so. Maybe I’ll frame a piece of paper torn from a notebook that displays my atrocious handwriting from way back when. Specifically the piece I wrote about a winged Megara creature in my Creativity: Writing and Teaching module; I was physically clutching a pen in my right hand, tight as I could, and moving my wrist by pushing on it with my left hand. It was laughable and yet I was near tears. I also once had to withdraw from a spirited group game of ‘Stop the Bus’ during some downtime at work, because my competitive play was insultingly limited by my ghastly scrawl. Well, no more. Handwriting and typing are back in my life, and I refuse to lose them again.


Now, I’ve said it before and I’ll say it a million times more – I’m glad this happened to me. I know that’s a really terrible phrasing and quite frankly just plain morbid, so let me try and explain. I’m glad it happened to ME, if it was going to happen to anyone. My parents said they’d switch places with me in a heartbeat, but really that would just make it worse. If it were a friend, family member or even just an acquaintance – actually, even someone I disliked or didn’t know that well – I wouldn’t be able to cope. I’d have wept so much more for them than I have done for myself, and that is a fact. So yes, I might sound crazy, but I wouldn’t rather have had this whole experience any other way. Also, cheesy as it sounds, I now have such a new zest for life – I appreciate everything and everyone, I yearn for new experiences and treasure old, I make plans for the future and am no longer afraid. I started this year feeling anxious because after my time at university ended, I wasn’t sure where I’d be or what I should be doing. Now I’m just excited. I’m finally seeing the open doors. All it took to get me here was a little blip, a few tears, and a big scar across my head.


Check some stuff out, maybe...
* Ben James Miller's EP on Bandcamp (all payments going towards brain tumour charity): http://benjamesmiller.bandcamp.com/album/one-day-ep
* My artistic colleague Matthew Anstee: http://teaandpencils.com/
* My Twitter/Instagram username: @gracieactually

Tuesday, 3 June 2014

The t-word, and the bright side.

Airplane tracks, scratching the sky, leaving a white cloudy path to Earth. To Earth, or from it - taking off or landing, depends how you look at it.

I couldn't bring myself to get out of bed this morning. Normally the family home brings out this early-riser in me, stirs the student and rouses the responsible; but today, I felt sedative-heavy, world-weary and generally defeated. It's such a cliche. A few fun-filled days in the sunshine with a backdrop of worry and the unknown - eventually that dark cloud will catch up with you. It wasn't until the third time in about thirty minutes that my dad's hand passed over my forehead that I felt ready to open my eyes. That, and he was rustling something in his lap. The same something that just landed on the doormat. Not one, but two packages of love and hope. I'd never ask for presents, but hey...
From my angel Kate, my coffee and wine lover, gossip-exchanger and general go-to girl, putting the world to rights most days and sipping Frappuccino's outside Sainsbury's in the midst of a nose-ring crisis every now and again - she sent me a card, a note, a book, a chocolate bar. I knew it was Kate when I saw the card, the quote 'Falling down is part of life; Getting back up is living', made me think of her wardrobe coated in quotes and the little pick-me-up pictures texts she sends me when I don't know what to do with my life. She pottered around Waterstones and she found me a real gem, a beautiful novel by one of my favourite authors, 'Every Day' by David Levithan. It's going to the top of my to-read bedside pile. As for the Dairy Milk bar... That badboy found a happy place long ago. 


My three amigos, the aforementioned family, sent me each a handwritten postcard, plus some Crystals goodies - oh gosh, the goodies. Two gem rings I'd set aside at work ages ago, plus two stones specially made for healing and protecting. Happy tears aplenty. I can tape some 'important sentimental-type' rings to my hand during my dreaded op - more on that later - and I've got 'em now. Those stones will sit on my pillow. Pride of place. 


My all-time favourite book is 'One Day', by David Nicholls. I urge you all to read it. It inspired me to go beyond the blogging world and create my own characters; all with their own back stories and rich personal dramas, dreams and lessons they've learnt. That book made me weep in the hot Majorca sun last summer, while I was making my way through the tougher parts of the plot, and then again when the book ended, and I was halfway through a bottle of cheap peach schnapps and a game of Scrabble. It made me feel, not just write, damn it.
So this is why I feel the need to fill in everyone's history - like today, Sister S with her two daughters at home, who she named the second she met them, and her apartment in... Wait for it... Winchester. Fate. Destiny. Geography. C'mon, seriously. What are the odds?
Sister S believes in the power of blogging. She wishes me well in all that I do, and she knows what a therapeutic thrill writing gives me. That's important. 

Mr B, my neurosurgeon, is honest and straightforward. He looks us all in the eye, dead steady, as he tells us the facts - what he knows, and what he doesn't know. For instance, he knows it's a tumour. He knows it's a substantial size. He knows he won't be able to remove it all. He doesn't know what exactly it is - but he's going to find out. Without a biopsy; he's just going to dive into my head and have a jolly good look. While I'm going under and then instantly waking up again, in actuality it'll be around eight hours of tampering and fixing and rooting around. Removing the evil.

So yes, the t-word has been dropped. The cards are on the table, the first glove-slap issued. And I'm actually doing alright. The whiplash is fading fast, to be replaced by fierce determination and what not - whatever it is we brain patients develop and cling on to. 

Mr B left the room, briefly, to fetch some cups of tea for us all. Builders'; milk, no sugar. Sweet enough, and a sweet gesture. As he backed out of the room, my team (Team Latter, mighty mighty) and I huddled together and took one tiny moment - one of two, the second being just as I left the hospital and turned the corner when I was suddenly stupidly overcome - to just sob, just a little. Because it's so much. 

My brain looks like a cat's face on the computer screen. A scrunched up, displeased moggy who's been disturbed from his nap between naps. This muddled brain of mine is throwing up all kinds of mad metaphors. Today it's all things cat. 
We watched 'The Secret Life of Cats' last night, and in between the stunning photography encapsulating cats - just cats falling through the air, like physically falling and saving themselves on those mighty haunches of theirs - there were more stunning images of cats, and little facts here and there about hunting patterns and the importance of a good slow-blink to gain trust... So basically, my stupid brain is stuck on cats. That's okay. I am a crazy cat lady forever. *beats chest, throws up douchebag backwards peace-sign*

The 40+ Facebook messages have all been read and thoroughly exhausted me, and honestly I couldn't be more thankful to be this damn knackered. Right now, all I want is a stack of books and a shot of Jack D. I'm settling for a blanket and CSI. 
Tomorrow we have a Waterstones trip planned. A book-hunting extravaganza. The search for the perfect bedside companion. Then we'll have a coffee, go for a pub lunch, then I'll nap. That's enough planning for me. Books and coffee. 

Thursday afternoon, I go into the magical hospital. Those wonderful exceptional individuals who devote their lives to others, they'll be focusing on me and I couldn't be more grateful. Friday evening, I'll be on the ward with others like me, looking out into the gorgeous garden, reading my books - and visitors will be encouraged. Oh, yes. I want visitors! I'm allowing myself this one selfish concept - a friend at my side as much as possible. Just the thought of seeing friends, neighbours, family, my oldest and dearest and the most unexpected human wonders I've come to know shuffling up the ward just to steal a few minutes holding my hand - man, that sounds like perfection. 

It's stupid, but I can't help thinking: thank goodness this is happening to me. I wouldn't wish this on anyone. 

My sister's made me a CD entitled 'stars', featuring songs all with a similar subject matter. I am sensing a theme. The Fault in our Stars, arguably the best book to come into existence recently, is being given the movie treatment - and it appears onscreen Friday. Friday, while the surgeons are tinkering. Now, I'm not sure if it's just the US, or worldwide, or what have you... But go and see it, guys. Consider that an order from a gurney-bound girl with stars dancing around her head. 
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