Tuesday 3 September 2019

Acceptance


Hello, all!

I have no idea how long it’s been – and I refuse to look because if I don’t look at it, then I can’t feel shame over it, alright? It’s a system that’s working well for me so far, and I’m going to stick to it. So, apologies, and thank you to anyone who actually keeps up with this darned thing (I say ‘anyone’ like there’s more than one of you. Highly unlikely.).

I had some thoughts and I came across my blog again and I thought that perhaps I would put those thoughts somewhere other than the folder I keep on my laptop for things-that-I-never-wish-to-look-at-ever-again-because-they-were-strange-feelings-I-had-at-one-am-and-I-don’t-want-to-be-reminded-of-how-pathetically-weird-those-early-morning-hours-can-get.

Anyway, I had some thoughts on acceptance this time (oh, aren’t you all just so excited for this one). Mostly on acceptance of myself, really. I’ve reached a point where I’ve found myself fully in my twenties, living mostly as an adult now, feeling adult emotions and wondering where the experiences of my childhood have left me – what state am I now in, and how does it affect my future? What kind of a person do I really want to be for the rest of my life? Because that’s a thing you can change, you know. Lot’s of people say that ‘people can’t change’  and ‘a leopard doesn’t change its spots’ but it’s total crap. People can change if they want to – and do change, in fact, quite regularly. And it got me thinking on the things I wanted to change, and the things that have already changed over the past couple years – the skin that I’ve stepped into. One that was always there waiting for me, but just needed to be claimed.

See, mostly what I’m talking about is how I am now that I’m past the illness. How I am now that I’m so far out that it all seems like some kind of distant dream as opposed to the reality of a good portion of my teenage years. I remember trying to escape it at several points – going off to university, thinking that this was finally my chance to completely shed the cloak of cancer I had inadvertently donned at fourteen. Shed the pity and the embarrassment and the explanations and worry – shed all the parts of me that I thought weren’t necessary. Shed the parts of me I thought were ‘damaged’.

I hadn’t realised then that some of the most beautiful parts of me had been collected during those years.

Don’t get me wrong – cancer has damaged and broken me in so many ways; twisted me so that I can never see life in the same way ever again, made me a more selfish, anxious person, turned me into a careless, irreverent sort of person. But it’s also opened me up in ways I didn’t think possible.

I’m more compassionate, more empathetic. I live life much more aware of the people around me, and how each and every action I make and word I speak inevitably affects something or someone. The world is a study on causality, and we’re all cogs in the machine of it all. We all contribute to the chaos, we all live within the same bubble, breathing in each other’s dust and bumping each other’s lives onto different tracks. I mean, it was always like that, obviously, but cancer is responsible for making me aware of it. Now I know how I can affect others.

For example, every now and then, I’ll say something mean – or think something uncharitable – and I’ll have a sort of flashback. I’ll think back to this moment, that has stuck with me over the past five years, where things started to get truly serious when I was ill.

I was in isolation on the ward, blasted with high dose chemotherapy and pretty much without an immune system to speak of. I was tired, and sick, and I had tubes snaking out of my chest and my nose and arm. I felt like I’d been fighting forever, you know? It was one of those long, drawn out moments that didn’t seem like it would ever end – like I would be suspended in a bubble of misery forever. Like nothing would ever feel truly better ever again, even if I got well again.

My stats were starting to waver, my heart rate was slow, my kidneys weren’t putting out what they should be. Nurses and ICU staff kept bustling in and out, threatening me with catheters and a trip to Intensive Care, and worrying over what my body was doing. Everyone seemed to be at that point – you know, worried.

But for that half an hour before they started to debate putting another tube in me, I finally felt peaceful. I finally felt like there was something better waiting for me. It was like I could sense what my body was starting to do, like I could feel it teetering on the edge of giving up, waiting for me to give the go-ahead, wondering if it should pitch this fit or not. Of course, the likelihood is that the nurses would’ve stopped it in its tracks before it managed to get that far – but for once, I felt an inkling of control. An inkling of relief.

Like if I’d wanted to, I could’ve let myself give up. Let myself drift off into something, finally, without pain. And it was so tempting, really it was.

But it only took the turn of my head to realise that it would’ve been a mistake. I remember shifting, my limbs burning with the pain, my stomach lurching and neck shifting enough that I felt like choking on the ulcers lining my throat. I remember letting my head flop to the pillow, feverish skin and all, and I remember feeling my heart stutter inside my chest at the look on my Mum’s face.

I felt like I couldn’t breathe as I looked at her tense shoulders, the trembling fingers as she tried to coax fluids into me, her watery eyes trained on my chest and my face at all times, watching me breathe and checking for pain or for signs of going downhill. A panicked sort of helplessness that comes with sensing your child clinging to the balance, hoping and praying that nothing happens – but knowing there’s not much you can do about it if it does.

It was like waking up again.

And suddenly my heart was beating faster at the trembling lips of my Father and his gruff strokes along my bald head – his countless trips to the shop for items I found I didn’t want, after all. His promises that my life was going to be something better than this.

My kidneys worked just that little bit better with the distraction of my little sister, her scrambling for anything to take me away from the pain. Her clammy hands and her scowl when my parents made her leave my side to go home.

I found myself wanting to live more than I’d ever wanted to. People say it’s that it’s a fight against cancer, but it’s not really. Treatment for cancer is something to live through, something to survive. It’s something to lay back and just take. To endure.

But for one of the only times during my treatment, I found myself wanting to actually fight. I found myself focusing on the tiny cells wreaking havoc within me, as if I could destroy them through sheer force of will. I found myself doing whatever I could to make it even a little bit easier – longer gulps of water, more co-operative at meal and med times, stretching the withered muscles in my legs. Anything that made me feel as though I was doing something to work against what was trying to destroy me from within.

And, now, when I think of those moments, when I’m mean and uncharitable, when I think of what I chose to live for – I think that what I’ve been through, and what it put my family and friends through, and how they all live now because of it, is enough. I think enough pain has been inflicted on the world on my behalf, and I think that if I can avoid one more person feeling even a fraction of what we felt, then it’s surely my duty to at least try. Try harder, and try better, and live more aware.
I know you all probably started this hoping for some kind of insight into how I’m doing, and not some self-righteous moral spiel (which I promise I wasn’t aiming for), but that’s exactly where I’m at right now. The world is a terrible place, and plenty of people who absolutely don’t deserve it have bad things happen to them all the time, and I’m still trying to come to terms with that, but I’m learning that the answer to everything is always just to be goddamn kind.

Just try harder. If the only thing I’ve learnt from almost dying twice is that, then I’ll live the rest of my life at least knowing that I’ve tried to give back the emotional energy expended on me.

Anyway. Oh gosh, this took a turn I wasn’t expecting. My true point to this post was that I think there came a time when I realised that I’ve got to stop trying to bury what happened – stop trying to pretend like cancer never happened, like every second of it isn’t etched into who I am now – and just accept that it will always be a part of my life. That, actually, it made me a better, more loving, more grateful person.

Sure, my spine is fractured, my ovaries are dead, my head is scrambled – not even mentioning the late effects risk of further cancers, as well as issues with my lungs and heart – and I’m always worried that the next issue is just around the corner. But I’m alive.

I’m alive.

Not only that, but I’m living in America for the year as part of my degree (information for the nosy ones) – studying at a University here, returning to my most cherished state of total Befuddledness, and trying to see whether I’m truly capable of being a fully functioning and competent adult (likely not, but y’all can’t say I’m not trying).  

So thank you – to everyone who got me here. I know I’ve said it before, but something always reminds me how grateful I am, and I feel the need to tell you all again. I hope you’ve enjoyed this utterly pointless instalment of a blog that absolutely no one reads anymore, and its, once again, crazed ramblings at ungodly hours. And I really will keep you all updated at least once a year this time (wow, aim for the moon).

Over and out,

B x

Wednesday 3 February 2016

'Climbing My Carpet'

I know it's been two years now since I have been on treatment and, honestly, the talk of cancer-related issues is probably becoming somewhat tiring to a lot of you (sorry...) - but I have MORE to complain about so strap in, mis amigos, you're in for another treat of a post. *insert inappropriate winking face here*

No, seriously, though - it's SOOO (that deserved three O's, okay) good to be so far out... but World Cancer Day is coming up (apparently) and so is the anniversary of a good friends death, and honestly I thought I would just write a post to you all to let you know how I am, and what I'm going to be thinking about this month.

I assume that most of you have heard the phrase 'brushing it under the rug'. Well, when I was on treatment this was very much my attitude about every bad thing that happened to me. I had a night where I was so overwhelmed by such intense agony that I begged for death? Hey, better sweep that under the rug. Kidneys starting to fail, think I'm about to die? Under the rug you go, buddy. Told that I can never carry my own child? Hey - guess where that's going? CORRECT, under the rug.

Don't get me wrong - it worked for me at the time. I didn't have to deal with any deep emotional stress because I didn't think about it all that much, I just focused on keeping going with my treatments and trying to stay alive. There's nothing wrong with that, and actually it is probably one of the things that kept me from completely falling apart at the seams.
Honestly, though, after treatment was over the cracks started to show. I was nervous and jumpy, agitated at the smallest things - most of all, actually, I was so angry. It's impossible to describe the kind of rage I felt, that I still feel. At the injustice of it all, you know? I used to spend whole nights going through every mistake I'd ever made in my life, every person I had ever hurt and added them all up - trying to see if all of it deserved me suffering like that. Honestly, I felt like it was my fault. I felt like there had to be something that had caused it because if there wasn't - if it was random, and unstoppable and just "life" or "what happens" - then I don't think I would have been able to cope. I just needed to know that the fate wasn't as imperfect as that, even though I knew it was - even though the evidence for that stares us down every single day of our lives; on the news, in the streets, in our own hearts. Once I realised this, I'm not ashamed to say, I went a little crazy.

I couldn't deal with it all, I couldn't deal with all of these feelings in my head - and all these memories, too - and I just kept trying to shut it off but it wouldn't go away, kept pushing itself to the surface and forcing me to think about it constantly. It was like one of those scenes in a horror movie where the TV is on static because a ghost is in the room and someone tries to turn it off but it just keeps coming back on. The worst part of it was I thought that I was losing myself, bit by bit, to the illness all over again. All the pain, all the sadness, that I should've let myself feel while I was trapped in the hospital or at home came flooding in and I didn't know how to deal with it and be a part of normal life. So, really, I took myself out of my normal life. I didn't attend school, and I just spent whole days inside my head trying to piece myself back together - but nothing was fitting and I just started to give up, dropping the pieces one by one and lying down to let it take me.

I think the turning point was when I realised how much it affected those around me, saw that if I lost myself - then they lost me, too, and honestly at that point in time I was much more valuable to them than I was to myself. It made me take another look at the carpet that I had stuffed all those memories and feelings - and all that pain and anger and sadness - under and I, instead of climbing it to get through like I always did, I started to look under it. I tried to teach myself how to be with my own feelings, how to sit with the horrible things that had happened to me and to be okay with them - to understand that they were horrible, but that they happened and that nothing can change that fact. I'm saying all of this in past tense, but honestly I'm still trying to teach myself to do that. It's really hard to be okay with something that feels so completely wrong, but it's not impossible, and that's what I'm working towards now; being okay with who I am, what happened, and trying to let other people know it's okay for them to be okay with it, too.

I'm not saying that I'm completely sane now, or anything, because I'm absolutely not (who is?). What I am saying, though, is that now I can actually see around all of the craziness that has happened. I can breathe again, I can think about what happened and sit with it awhile (not too long, though, mind...) and I can act like myself again. Now that I can see that, though, all I can see around me is all of the other people I know and love who are having to do this all too. All I can think of is all the people worldwide who have to deal with this, have to process this like I did - have to choose on a daily basis which pain they're going to have to sit through first: their emotional, or their physical. All of it because the world is an imperfect place and because it's just life. To speak the truth (or write it) - I'm not okay with that, and I don't accept it. I know that's stupid to say because, really, what can I do about it? What I can do, though, is I can stand up and I can say "hey, I know it sucks, and it's not your fault - don't ever think you deserve it - and I'm going to stand with you".

Basically, what I'm saying is this: I know World Cancer Day seems like another made up day to gain more money for organisations and for people to jump on the cancer-sympathy-train, and honestly it quite just might be that, but cancer isn't made up. It's very much real, it's very much present and it's very much a problem that a lot of people have to face, and ARE facing right now. A lot of people that I know, in fact, are dealing with it right now. And honestly, we just all want people to stand up and tell us that you know we're going through hell, and that we don't deserve it - and most importantly, that you stand with us. Please - just stand with us today.

Love to you all
Lil xoxo

(Dedicated to my beautiful friend, Jamie, who sadly died two years ago of cancer - and who I wish, with every bit of me, hadn't. Not only because she was one of the most purely good people I had ever met, and someone who was so full of life, but also because everything would have been a hell of a lot easier with her here. To Jamie - I miss you.)

Tuesday 19 May 2015

The Beginning of Befuddled Baldy

Going into my tenth year of school (age fourteen), I got sick. It was the kind of sickness that crawls up on you slowly; without the snot and the coughing and fever. In fact, after two weeks of being at home and sleeping my mother asked me if I had had a fight with the girls at school and was avoiding them. Desperate to stay at home and sleep more, I admitted to some chest pains and was subsequently dragged back to my GP.

Looking back on it, my GP was the best that they could possibly have been. He was a relatively short man, with an eccentric temperament and tousled silver hair. I was bustled into a room with two medical students who, with nervously sweaty palms, felt my glands and checked my temperature and blood pressure. They both, between two highly intellectual medical brains, decided that I had some indeterminable virus. My GP, after listening to their conclusion, narrowed his eyes at me. He slowly went through a check-list of questions; Did I feel tired? Was I nauseous? Had I lost weight? Did I have any pain anywhere? Lumps and bumps? Finally, he dragged my clammy palm up to my face and studied them both.

"Order some bloods and come see this." He glanced at the perplexed medical students, who came over and also studied my palm intensely. He scribbled 'lymphoma' down on his pad. What? I suddenly felt the urgent need to nap.

"Something isn't right." My mother, who was sitting next to me, interjected. I sighed.

"Hmm. Mother thinks something isn't right. Okay. I'm going to take some bloods and we'll run them through today and hopefully get some answers for you by this afternoon or tomorrow morning."

Within days I was sitting in Addenbrookes Hospital, Cambridge. The most incredible thing about Addenbrookes is the sheer size of it - it is a world within itself, and for me it was to become just that: my world.

After an x-ray and more blood tests I was sent home to rest. Not that I needed it, having been in bed for the past three weeks now. Later that evening, while procrastinating attending an orthodontic appointment, my Mother got a call from the paediatric department at Addenbrookes. Apparently they had found a 'shadow' on my x-ray and needed a CT scan as soon as possible. My Mum gripped my hand all the way down to the dental surgery, her knuckles white. She then cried into the nurse's arms - who luckily happened to be a good friend. Then, after a tense - and for me, confusing - weekend,  Monday came and it was time for my CT scan. Within a few hours I was told I had a life threatening disease.

Diagnoses aren't like they are in the movies. You don't get told the news, cry and then become some kind of steely eyed, determined power woman. The human brain just doesn't work like that. I mean, sure, I cried; but only after being told that I couldn't swim with baby elephants in Malaysia the following week. It's not that I wasn't scared or upset, because I was. But my Oncologist's never said 'cancer' once in my diagnosis, and being only fourteen I didn't quite understand what a 'large mass in the mediastinum' really meant for me. Of course, once they explained I would lose my hair, it started to dawn on me. It didn't hit me until I was in the throes of it, and then I had no choice but to continue - my allotted time for the initial break down was over.

The weeks that followed were a blur of talking, tears and terror. Talking to our friends and family about it, the constant deliverance of bad news. I mostly left it to my parents, not understanding that a cancer diagnosis was not supposed to be given in a chirpy tone, followed by extreme awkwardness when that person proceeded to actually feel emotion. I patiently waited for everything to start, somewhat darkly enjoying the attention I was getting - though I would soon realise that though the attention would last, the enjoyment would not.  

I had my biopsy a week after my diagnosis. They cut into my neck, my chest, stuck a giant needle into my pelvis - and then finished off by threading a long tube through a vein in my neck. Everything was prepared immaculately; samples taken, my body turned into one walking port - ready to receive whatever poisons they had concocted for me. I was a walking chemotherapy vehicle.

The recovery from the surgery was slow - the slashes across my neck and chest made it almost impossible to move without pain, and I could barely look down for fear of seeing the unfamiliar, snaking tubes protruding from my chest. Finally, after a week of constant pain and sickness, they let me home on Friday so I could have one last shot at normality before I started chemotherapy on the Monday.

I refused to go into school on the basis that it was impossible to wear a bra for more than a second without either; extreme pain, or having to adjust and touch the line that dangled grotesquely through an open wound in my chest. Instead, I wore a baggy fleece into town that Saturday to meet my friends in a cafe. Photos were taken and muffins eaten, me hunched in the lurid raspberry fleece with my hair greasy and unwashed and my skin pale and sallow. My parents hovered nearby, obviously worried that letting me out of sight would result in the implosion of the tumour, or the ripping of carefully placed stitches.

The weekend came and went, normality slipping through my fingers like sand. Monday arrived, and I was dragged into the paediatric oncology day unit at the hospital. Staff wore brightly coloured pins and uniforms, and the walls, behind the plastering of children's drawings, were painted a sickly yellow. Kids younger than me, aged maybe four or five, wheeled around on mini trikes and cars - their bald heads gleaming with the slight sheen of sweat from the energy their sick bodies were exerting. Ghostly-pale mothers wheeled IV's behind them on which hung brightly coloured liquids labelled 'CYTOTOXIC' while fathers hovered nearby, should a child fall or pull their multi-lumen line clean out of their tiny bodies. I shuddered.

Talking to my doctor didn't approve my mood. He addressed my parents (as I was a minor) - and talked in a language I didn't understand; the language of medicine. After about an hour of what sounded like foreign place names, but were supposedly chemotherapy drugs, I began to wonder whether he was doing it deliberately to keep me out of the loop. If I wasn't scared - I wouldn't run, right? I then decided that if I was to try and run, I wouldn't make it past all the tricycled children, their parents AND the double doors.

An hour and a half later (they really like to up the suspense), I was hooked up to a bright red bag of chemotherapy. The nurses warned me that it might turn my pee red - so I drank as much as I could in order to keep seeing it happen. After eventually growing tired of the red pee, I began to feel optimistic about the whole ordeal - I wasn't noticing any adverse symptoms. I hadn't seen one kid throw up yet, and they all seemed happy enough. Unfortunately, on my way home from the hospital (cheery and thinking of my next meal) - the throwing up began. It didn't stop for a full ten days. I was sick almost non-stop. I would; wake up, throw up, go for chemo, be sedated, wake up, throw up, go home, eat, throw it up, sleep.

I was ready for this, though. I'd seen 'My Sister's Keeper' at least twice and knew what the deal was; I throw up, I lose my hair. The thing about the films is; they don't show all the nasty in between. If I wasn't bent over the toilet throwing up, I was soothing the army of ulcers lining my tongue and mouth. If I wasn't retching, I was howling from the acid reflux. I was in pain all of the time; my limbs, my stomach, my throat and lips.

I'm pleased to say it did get better. I found drugs that worked and eventually I would throw up only after the days I had to have all four of my chemo drugs infused. I began to live with everything, although instead of getting skinny like it showed in films- my face and body ballooned. I ate anything and everything, the high dose of steroids I was on pushing me to eating extremes. My face became fully circular - with the lack of hair and the pallor of my skin, my father likened me to a full moon (which is now, in our house, a term of endearment - as only my father could manage that).

It became easy. I would watch endless TV, do stupid arts and crafts projects that would clutter the house just so I could say I had done something productive: all while my mother lovingly supplied me with whatever food I fancied, which was pretty much cheesy mash or other potato products at every hour of the day. I was bad tempered and angry - angry that my life was meaningless and hard.

I was only comforted by the Young Adult Service at my hospital. They took me places, introduced me to people. The feeling of loneliness soon somewhat dissipated and I was returning to my normal self again - and soon enough, cancer free, too!

It returned sixth months later. Having to go through it again was easier: I knew what to expect. Fighting for my life was in my DNA now. I wasn't brave, I wasn't courageous - I was doing what I had to do. One thing most people don't understand about cancer patients is that calling us brave doesn't make us feel better about our condition. We don't have any other choice - if our cancer is curable, why wouldn't we cure it? It is that simple, we are just fighting for our right to stay on this earth. The way I look at is, missionaries and aid workers in third world countries risking their lives for the greater good and the service of others is bravery. Me fighting for my life - well, that's just simple survival.

Recently, being a year and a half out of all treatment (and still cancer free!) I was asked by someone what it did to my personality, having cancer. I gave the usual answer, the one people want to hear, about it changing everything and I was all about the LIVING now. But the truth is, I'm not. I love living, and I'm grateful for being alive, but I also am controlling and selfish and scared. Cancer has left all these scars; and not just literally. Every time there's a twinge in my chest, I'm scared. Every time I get tired or lose weight, I'm scared. Not many people know necessarily what I had to do to stay alive and maybe if they did, they would understand more why I am like I am. In my world, selfishness keeps you breathing. Controlling my life now is a way for me cope with such a huge lack of control with my health. I think the point I'm trying to make is that although I had cancer, and fought and survived twice, it doesn't make me a superhero. It doesn't make me stronger than everyone else, or more valiant. I still make mistakes, I screw up big time, and I'm still learning how to live just like everyone else is. If anything, cancer just made me more human.


I think one of the most important things that I have found from my cancer journey is that I am no longer afraid of dying. That isn't to say that I'm not afraid of death - because I am, very much so. Death is the door you can never come back from. But dying? You can come back from that. And I know, because I have. 

Love
B x

Friday 17 April 2015

I am, I am, I am.

Okay - so you know how I said I would write soon? Yeah... Sorry. I mean, I thought about it. I really did, and it's the thought that counts, but I just couldn't bring myself to put words to the page. Or screen, in this case. I've always found the most difficult part of loving to write is having to separate all these vibrant ideas in my head long enough to actually put one down.

I think one of the mistakes that people make when writing is the need for it to be meaningful, always. It was one of the most startling things for someone to ask me when I was younger; "But what does it mean?". I never needed anything to have meaning back then, much less my words and thoughts. Then as I got older everything suddenly needed meaning - I was taught by everyone to find the meaning in everything, you can't just enjoy the words and the feel of them over your tongue any more, they have to actually have a purpose.

I began writing again last year, after a while of avoiding it. It's a bit like riding a bike, you might be wobbly at first when you start again but you can never quite forget it. I'm actually not sure what this has to do with what I sat down to write about but somehow we have reached here and I'm not quite sure how to get back so I'm just going to start again.

So, I've been thinking recently - after a super interesting conversation with my counsellor - about who I am. I know that's a super cliché thing to say, especially at my age, but at this point it really does need to be answered (or at least I thought it did).
Readers (if there are any of you left), have you ever stopped and asked yourself who you are? Because I have found recently that it is not as straightforward to answer as one might think.

The first problem with defining oneself is labels. Do I believe in labels? Do I fit into specific labels? More importantly, what do I have to gain or learn by labelling myself? Not only that, but all people see labels differently - so the way I define myself might be completely different to how others define me.

Anyway, as you can see, I started off absolutely confused as to just what I was doing asking such a complicated question that in all likelihood I couldn't answer. I mean, it didn't stop me from trying to answer it further, but at least I realised it was stupid and futile.

So the next step to me figuring out who I am was trying to gage what my friends thought of me. Surely one of the best ways to find out who you are is to look at who makes you who you are? Unfortunately, in my experience, my friends have known me as multiple things; Immature Lily, Cancer Lily, Selfish and Angry Lily, Post-Cancer Lily, More-Cancer Lily, Semi-Reformed Lily, Confused Lily, Tired Lily. There's so many that I can barely remember them all - never mind try to define myself by them.

I looked then to my family, but the same thing happened and I then realised that the only person we can really ask to answer who we are is ourselves (wow what a deep statement). The thing is, there are so many qualities that define who I am. So I started to make a list of what I thought I was. I'm going to post it here because those of you who are reading this already know me pretty well:

  • Feminist
  • Cancer Kid
  • Cancer SURVIVOR
  • A Romantic
  • CHRISTIAN
  • Selfish
  • Loving
  • Drama Queen
  • Humorous 
  • Writer 
Okay so those are just the ones that I could come up with in the moment that I was actually writing. The thing is, though, that makes me several things. It doesn't just make me one thing- but many. I think it was then that I truly realised asking myself who I was was a futile attempt. Not because it was confusing and the answer was hard to find - but because it was impossible to find just one answer. Humans are not 2D beings, we are three dimensional. We are made up of what we have been through, what we want, our futures, our pasts, our presents. We are a scrapbook of scars and love and fear. 

Being a fan of Sylvia Plath, I found a great line from 'The Bell Jar' that really describes how I feel about being alive. Being alive to me is no longer about searching for answers or meaning - I have reverted back to the days when I would write because I needed to, not just when I had something meaningful to say. I'm living. And you know what? That's friggin' AMAZING, why question it?

So I'll leave you with the words of Sylvia Plath;
"I took a deep breath and listened to the old brag of my heart: I am, I am, I am."

Love to you all, B x

Tuesday 10 February 2015

“Waking up was a daily cruelty, an affront, and she avoided it by not sleeping.”

The quote in the title is from a book; "A lion Among Men" by Gregory Maguire- which funnily enough is written from the perspective of the cowardly lion from the Wizard of Oz. That's exactly how I have been feeling recently: Cowardly.

So I'm just going to say it- I'm a total insomniac. I always have been, I suppose. When I was a kid, I had this huge imagination and no idea how to control it- so I would imagine spiked tentacles coming out of my closet, and Shadow Beings darting across my doorway in the middle of the night- those were probably the least of my worries in a world like this, but at age 7 or 8 they were serious enough to make me sleep with the cover right over my head. How this would prevent me from coming to any harm from such supernatural beings, I'm not too sure- and to be honest it was actually super hard to breathe under there... but anyway that's not the point.

The point is that I've always been like this- when I got a bit older, and I had witnessed more in my life to be scared about than just spiky octopuses, I got nightmares. Terrible ones, that meant putting off sleep was better than sleeping and having to face the nightmares. I eventually saw a therapist for a while, and she helped me cope with them- as I had started to fall asleep in school- but they were always in the corner of my mind as I pulled back the covers each night to slide under.

When I had cancer, and I was on treatment, I was so miserable that actually going to sleep wasn't the hard part- waking up was. Having to go through that every day, each one more horrible than the last, was just so unbearable that staying up until 6am with Sex and the City, food and my thoughts seemed preferable than waking up and realising I wasn't the same little girl who's worst fear was some Shadow creature that she'd made up in her head- the fear that I was dealing with now was real, and unavoidable. I would take my medications, and receive chemo, and throw up, be poked and prodded and then I would do it all over again- every day. My life had turned from one where my imagination wasn't the only thing I couldn't control- I couldn't control anything anymore. My whole life was about fighting for my life, I was living a nightmare. So to avoid waking up, I avoided sleeping. However, this didn't work out so well for me when I realised that actually exhaustion and a terrible sleeping pattern didn't bode well for getting up early for hospital appointments and actually being well enough to cope with everything that was happening.

So, now all that's left is the present. Why don't I sleep now? Well, it's quite boring, if I'm honest. The only time I can really feel what I'm feeling is when no-one is around me and the world is silent and dark. It sounds stupid, but every day I'm so many different people- for my parents, for my friends, for polite acquaintances, for teachers, for medical professionals. It's a never ending cycle of different personalities for each group. When it gets to 2am and darkness has covered England like a blanket, and my house is silent apart from the soft breathing of my family- I feel like I can breathe and be myself. I can write, and cry, and just listen. If I want to, I can just sit and stare- I can just think. I can keep myself sane, is the more important thing.

I think people who live in writing are like that anyway- we get our best ideas when the dark is all around, and nothing is there to distract the millions of thoughts and voices whirring in our minds. And if I'm not desperately scrawling at 2am, then I'm probably reading feverishly. There's no laziness in the early hours of the morning- you would think there might be, when it's silence and no-one is around- but everything seems to move much more quickly than when everyone is awake.

I should probably stop rambling about my pathetic sleeping habits now, and leave all you lovely people to actually get ready for bed- or get up, depending where you are. I love you all, I'll write soon.

B x



Thursday 15 January 2015

Flu-Ridden Ramblings

I'm not even going to apologise for not writing in so long, as I probably sound like a broken record (though I am- sorry, that is, not literally a broken record). It's been a whirlwind since I last wrote- I have had both the best and worst of what is now my semi-normal life. I have dealt with abnormal problems like yet more health issues, and I have dealt with normal stresses- like school and exam pressures and boyfriend dramas (though I refuse to divulge that information, as it is boring and tedious).

What I will talk about however, is the adjustment between cancer-life and normal-life. I mean, it's not like it's just a switch that you get to turn off whenever you finish treatment- you can't just go back to being "normal". Life doesn't work that way with anything, least of all something like cancer.

Getting back to normal is a lot more difficult than people think it is. The common misconception people make is that everything you have been through just leaves and you forget it all- after all, why does it matter if you're not going through it anymore?
I've learnt that people are very shallow when it comes to these issues. What I mean by that is not that people aren't awesome with them, or they aren't sympathetic- because most of you are. It's just that a lot of you work on appearances- if I have colour in my cheeks, and hair on my head, it means I'm okay. When really that's not the case at all- just because I'm a year outside of treatment doesn't mean that I'm magically normal again, it just means I'm further away from the trauma than I was before.

I read a blog post recently that I absolutely ADORED, which gave a list of things a person with cancer wants you to know. I thought it was brilliant because it really gave me something to relate to- something I could laugh at, something I wanted to so badly show my friends and be like "hey this totally applies"! But I didn't. I have recently become quite cautious in what I say about my situation and where I am, and what I've been through. This isn't because I don't want to talk about it- in fact, talking about it actually helps me. Lots of people hate talking about their cancer, but I'm one of the ones where talking about it makes me feel like I'm not alone in it. Like people know a little about what I'm going through, and therefore they're one step closer to understanding it.

Anyway, the reason I'm cautious is because the words 'attention seeking' and 'selfish' have been thrown about quite a lot when it comes to me and what I talk about and say. I'm not going to point blame, or even blame anyone really. Because the truth is, I totally understand where people are coming from when they say that. Cancer has made me a little selfish, and I totally admit that- but I also want people to know that I'm selfish for a reason. Fighting for your life kind of does that to a person, it makes you look out for yourself, and it takes a while to adjust back to NOT just looking out for yourself.

But what I don't get is the 'attention-seeking' part. I mean, if truth be told, I am a little dramatic- I have known to be called a drama queen by some of my best friends and I totally don't mind that. I'm fine with being a drama queen. It's not a big deal- I'm theatrical. But when it comes to cancer, if anything I downplay what has happened. Even mentioning it casually- makes people look as uncomfortable as if you had presented a tarantula to them. It's difficult to feel comfortable around people who are uncomfortable with part of who you are. Cancer is a huge part of who I am now, the best and worst of me- the most significant thing that has ever happened to me, and the most devastating. I need people to talk about it with me like it's second nature, like it's just a characteristic of my personality. Like it's not the elephant in the room.

I guess the point of this was really just to say that I'm not adjusting back to normal life. It's hard to be around so many people who know my whole situation and still don't just accept it without feeling super uncomfortable. I get that for some people it is a reminder of family members, or previous sadness- but for me, it's my life. I think when I go to university, and meet new people who don't know my situation it will be easier. Because then at least they won't be not accepting part of me, they'll just not know about it.

Sometimes I just feel a little hopeless- like life after cancer sucks just as much as it did when I had it. But then I think; at least I'm alive. Finding things to be grateful for every day helps me get through- and it's my new year's resolution to find at least five a day. So, I thought I would share today's with you all.

1.        I'm totally grateful for Kate Bush and her amazing voice and way with words
2.        I'm super grateful for my Mother, who brought me a range of food lovelies so that I wasn't so down about being ill this week and sat through a terrible musical with me just because she loves me
3.        I'm grateful for Lucy and her wit and hilarity and the way she swoops in every day after school to make me feel better and to let me know how she is, and how her day went
4.        I'm so grateful to my Dad, who is in India at the moment, but who made this week far more bearable by making silly jokes and just being there to cheer me up in my state of illness
5.        I am massively grateful to my friends Becky and Matt N, who have both shown how much they love me (by telling me, or by buying me a coke and having THE best catch up- or by planning a girls night) and have cheered me up
6.        And finally I am grateful for my gorgeous boyfriend, who has told me he misses me every day I've been ill and has bought me flowers and chocolate to cheer me up and make me feel loved.

All of these things (and I managed six, not just five) make me think that really, life isn't so bad after all. I've got people who care about me, and I'm not sick anymore (not with cancer, anyway) and I laugh at least once every day.

Find something you're grateful for- because life is good, readers.

Love to all.

Lil xoxo

Wednesday 14 May 2014

"We need never be hopeless because we can never be irreparably broken." J. Green

I think there are points in life where everything just seems a little meaningless. It's hard to continue, and everything you do seems to have no real end point, no real reward- like you're working really hard towards absolutely nothing.
I've gotten to that point now, and while aimlessly trawling through the internet a while back I stumbled across a saying; "Everything will be ok in the end. And if it's not ok- it's not the end."
It struck me that I had been looking for this saying my whole life. There are variations of it, "things will get better" being one of them, but only this set of words really struck me as the most meaningful thing I have read (especially when trawling through the internet).
I thought, and thought, about this one little phrase and what it could possibly mean. And I realised life is one great marathon- everyone is just trying to get to the end. No matter whether you jog it, walk it, run it, wheel it- everyone is just aiming for that finish line. You start off confident, able, and slowly that confidence is knocked and you get more and more tired and weary until you feel you can't go any further. And at some point or other you wonder why the hell you are even running the damn race in the first place- especially since no one else around you seems to be struggling with the run.
I feel like this is the make or break of that persons marathon/life- we can choose to discontinue and leave the race, or we can continue and accept that water bottle from that stranger (or that helping hand from God, a friend, or family in real life) and keep on going even though we have blisters and we're tired.
I think of it as this- there's blister plasters to cool the blisters on your feet, there's power bars to keep you energised, but there isn't another marathon once you've left it.
And even though sometimes it has sucked, and it's worn you out and all you want to do is sleep for a thousand years at the end- you're happy you've made it, sad it's all over and relieved you can rest now.
I imagine that's what it's like at the end of life. And I pray that I make it to the end because even though I'm tired, and I'm battered and everything seems a little bit pointless- it's not the end yet. And you know what?
Everything's going to be ok in the end.

This post is dedicated to a friend of mine whose Dad is in the hospital, and struggling a bit at the moment. To him and his family, everything must seem like that terrible point in the race. So this post, my first post dedication, is for them.

Love to all of you runners in this never ending race,

B x