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