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