Spilled milk

The steroids I took when I had cancer left me looking like the opposite of a cancer patient

25th April 2018

On my neck, nestled next to my collarbone, is a scar that people often mistake for a love-bite. They joke, “Ooh, someone had a good weekend! Who gave you that, then?” but when I explain that it’s a scar from a biopsy, and they ask, “For what?”, and I say that I had cancer as a teenager, they usually get a bit sheepish. I don’t really find it awkward, though, because that was my normal.

In 2009, when I was 15, I was getting so thin that some of my family thought I was anorexic. I’d always been slim, and teenagers’ bodies are always going through weird changes, so nobody really noticed the weight dropping off. Then came the fatigue. Getting home from school, I would flop onto the sofa and lie there lifelessly; watching TV for hours at a time without moving an inch. I felt drained all the time. Again, my mum put it down to hormones and left me to it.

Leila
I was a skinny teenager when I found out I had cancer

It wasn’t until that summer that things really began to escalate.

Now, it’s a good thing I sit like a weirdo because it probably saved me a big chunk of my life. Watching some trashy Saturday night TV at home, I was curled up in the armchair with my right elbow leaning on a propped-up knee, meaning my right hand rested – oddly quite comfortably – on the right side of my neck. Adjusting myself at some point, I felt something that I was sure hadn’t been there before. I poked at it for a second, then turned to my mum and said: “There’s a weird lump in my neck.”

The next day, I woke up around midday and checked to see if it had magically disappeared. It hadn’t. My mum abandoned the broad beans she’d been preparing for the Arabic dish bagilla for our lunch and drove me to the hospital. In hindsight, it was really lucky that it was a Sunday because if I’d had to go through GPs it might have taken a lot longer to figure out what was wrong.

Because of the swine flu outbreak that year, I was put in solitary confinement and had doctors and nurses coming in and out of the room all day with masks across their faces. If I’d never felt like a freak before, I did now.

As the hours went by, the weather outside developed into one of those rare hot and sticky August days, and of course – being an ill, forgetful and lethargic 15-year-old – I’d forgotten to put deodorant on that morning. The jumper I was wearing without a top underneath was getting pretty stinky and my mum (who’d been permitted to stay in the room because if I had swine flu I’d probably already infected her – sorry, Mum) began to smell the vile stench radiating from me.

The lump in my neck had been a tumour

Embarrassed that the nurses would be able to smell it, she tried to wash my jumper in the sink while I sat, arms folded, on the bed. Again — sorry, Mum. It didn’t work, and I continued to stink, so it ended up being a blessing in disguise that the nurses had their noses covered.

Leila
My mum Manda was by my side every time I vomited or couldn’t sleep through the night

That day has since been named Yellow Jumper Day and the broad beans ended up rotting at home because what followed were ten long days of blood tests, scans, more solitary confinement for possible Tuberculosis, an operation for a biopsy on my neck, a bone-marrow sample taken from my pelvis, and a lot of waiting around in hospitals across the South of England, before I was finally diagnosed.

The lump in my neck had been a tumour and I had Hodgkin Lymphoma – a blood cancer which could be likened to a distant, slightly less hideous, cousin to Leukaemia.

That night, lying in my hospital bed with my mum asleep in the pull-out next to me, I cried

The doctors told my mum first, and she then told me. I remember feeling slightly numb – not sad or angry, just a bit empty. That night, lying in my hospital bed with my mum asleep in the pull-out next to me, I cried. I wasn’t crying for my health or what my body was about to endure, because I had no idea what was in store. Instead, I wept for the mane of hair I was sure to lose. Superficial it may be, but that was what hit me the hardest. It was long, brown and ridiculously curly. Ordinarily, I would scrape it into a bun or ponytail to get it out of my face when it was annoying me, which was often, but I was now lying there, sobbing and clinging to it as if holding on tight enough would stop it from falling out.

Leila
My body shape changed so rapidly because of the steriods

I was put on a six-month course of chemotherapy, consisting of a lurid red liquid being pumped up into my veins (which made my mouth taste like metal and my wee turn red) as well as having to take twenty-six and a half pills a day, including steroids. The medication was incredibly strong but my anti-sickness tablets were quickly adjusted, so after one bout of regurgitating pasta and unbearable stomach pain on the first day of chemotherapy, I didn’t really have any problem with food after that.

Actually, that’s a gross understatement.

I didn’t look like a stereotypical cancer patient

I couldn’t stop eating. Thanks to the steroids, I was not full for the best part of a year. I would get home from school and devour everything in sight. It was like an ongoing joke. “Look how much Leila’s eaten! She can’t stop! Where’s that loaf of bread gone, Mu- What? She’s eaten the whole thing? Incredible!”

Teapot Leila
For my 16th birthday party (which I planned one night I couldn’t sleep during my treatment, with a fair bit of morphine in my system), I dressed as Mrs Potts from Beauty and the Beast. You can make up your own mind about the resemblance

Not only was I at this weird age where I looked way too old to be on a children’s ward and far too young to be in with the adults, but I didn’t look like a stereotypical cancer patient either. Kids on the oncology ward were being begged to eat because they were so thin and fragile and gaunt. Parents were on the verge of bribery trying to get their child’s appetite back, and there I was; sat up in bed like the bloated Queen of Sheba, with my mother at my side like a doting servant. She brought in carrier bags (yes, plural) of snacks every day, but she still barely had five minutes in the chair next to me because it was never enough.

I looked like I’d just devoured my entire family and stored them in my cheeks for winter

I didn’t look ill. I looked like I’d just devoured my entire family and stored them in my cheeks for winter. I was going through everything the gaunt kids were going through but receiving less ‘obvious’ pity, and I was thankful for it. I may have still gotten the crippling stomach-aches, hourly migraines and lost the use of my legs for a few months, but, from under my wig, I just looked like a bloated girl who was going to pass a lot of wind when she thought you weren’t looking.

Don’t get me wrong. I hated the way I looked. It wasn’t so much about the weight I’d put on, but the way I had ballooned. I still recoil when I see photos of myself from those days, but stretch-marks and self-depreciation are a small price to pay in exchange for receiving pitying eyes and sideways head-tilts.

I had to grow up a lot quicker than my peers

Despite getting to eat all the time, it was one of the toughest times in my life. I had to grow up a lot quicker than my peers, but I came out the other side stronger than I had been. I somehow managed to leave Year 11 with 11 GCSEs, even though I spent most of each week watching The Jeremy Kyle Show on a tiny hospital television, with needles going into me and tubes coming out.

spilled milk
My tattoo reminds me of the trauma my body has been through

My face and body took a while to deflate, but my hair soon began to grow back. Nine years later, all I’m left with is a smorgasbord of scars all over my body acting as little milestones, a few photos which I prefer not to look at too often, and a tattoo of spilled milk on my arm. The spill frames a tiny scar which I hope won’t fade and is there to remind me of my own strength, should I forget.

It’s hard to know when to stop talking about what I went through because there was no clear or satisfying ending to that chunk of my life. I cried to my mum when we got home from the hospital on the day that I was given the “all clear”. I didn’t know how to feel or how to process my emotions, but I knew I was meant to feel a lot happier than I did. So, I cried. And that’s ok – crying is great. I guess it just depends on what you classify as “spilled milk”.

25th April 2018