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
