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What It's Really Like to Live With Cancer as a Child

Updated on May 28, 2017
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Getting cancer isn't something that's supposed to happen to a perfectly normal, healthy, 14-year-old girl. This is my story.

Childhood cancer: a terrible illness you hear about in the news. Forty-three children a day receive this diagnosis—88% of these kids survive. Childhood cancer only accounts for 1% of all cancer cases, but about 60% of these children will experience related problems later in life, including infertility, heart failure, and secondary cancers.

Almost every day, you'll see a Facebook post of a child holding a sign saying, "I beat cancer!" or you'll hear somebody talk about their uncle or grandad in hospital having chemo. This deadly illness will most likely appear in your life at some point, whether it be a friend or relative who has been diagnosed with the disease.

But not you.

Cancer often seems like a foreign concept—a heart-wrenching story you see or hear about from charities or heartbroken relatives, or perhaps the gut-wrenching stories from the survivors themselves. You see pictures of weakened children in hospital beds bearing their bald heads, or adults surrounded by their family attached to IV lines. But most people don't know what it's like to be the person attached to the drip, with murderous drugs and endless painkillers pumping through your body 24/7, confined to your hospital bed for weeks on end.

Is It Tonsillitis...?

My diagnosis came quite slowly. I went to the doctor after coughing up some blood, and he took one look into my mouth and diagnosed me with tonsillitis, as my tonsils appeared extremely swollen. I remember one of my friends saying to me, "Are you sure? Because no offence, but it looks a lot worse than tonsillitis!" I took antibiotics for a week, but they did nothing. The doctors then recommended an emergency tonsillectomy, mainly so I could recover within a week and be ready to go on holiday for the summer as planned.

So I went to the hospital, waited around for a very long time, and finally went under anaesthetic. When I woke up, I remember being offered painkillers and toast, but I wasn't hungry. I could still feel the swelling in the back of my throat. My parents explained that my tonsils were still there, and that they weren't the issue. The problem was that something was growing behind them, pushing them forward. The surgeon took a biopsy, but the sample wasn't big enough.

Surgery Revealed an Underlying Problem

This was the moment I started to panic. I realised my symptoms had been there for months. I couldn't swallow food, as this Thing was blocking my throat. I hadn't been able to breathe through my nose at all, nor had I been able to hear properly from one ear—symptoms I thought were due to a cold or hay fever. I was scared, in a hospital bed, unsure what was going on. It dawned upon the darkest corners of my brain that I might have cancer, but I tried my hardest to shut this out. Don't be such a drama queen, I told myself. Getting cancer isn't something that could happen to a perfectly normal, healthy, 14-year-old girl.

But I was sent to Southampton hospital for a second biopsy, and I was shocked to find myself admitted to a cancer ward. This solidified my fear. They took the biopsy, and I was sent home. I spent the next four days awaiting a phone call, to confirm what I already knew. A cancerous tumour was growing in my lymph nodes, blocking up my ear, the air passages through my nose, and halfway through my throat.

The Diagnosis

When I was diagnosed, I wasn't shocked. I didn't cry. I'd already kind of accepted it in my head, even though I never really wanted to believe it. Hell, I'd already started planning how I would tell my friends. I remember receiving countless messages from people I barely knew saying something along the lines of, "I know how you feel. My [insert family member here] had cancer, but (s)he survived, and so will you!" Gifts from relatives I barely know and condolences from friends of friends and people I've seen walking through corridors came rolling in, but the sympathy was gone after the first couple of weeks.

As was my hair. I started chemotherapy quickly, and I spent five days in hospital receiving it. I went home for the weekend, and then I went back in for the next six days, which was bearable. I came home again, still feeling fine, expecting a two-week break before my next round of chemo.

But no. Those two weeks I spent mostly in hospital.

My Experience With Chemotherapy

Chemotherapy drugs attack every fast-growing cell in the body—which was good for me, as I had a specific type of non-Hodgkin lymphoma called Burkitts. This s an extremely rare and fast-growing form of cancer, and fast-growing means it responds well to chemo. But it also attacks your blood. Low platelets means your blood can't clot. Depleting haemoglobin means oxygen can't travel around your body fast enough, leaving you feeling fatigued, weak, and sometimes unable to even walk. No neutrophils means neutropenia, which basically means your body has no immunity to anything. I had to boil all my water before I drank it, I couldn't use public transport, and I had to shower two or three times a day. Despite all of these precautions, I still got an infection that meant hospitalisation for at least five days between each cycle of chemo, attached to yet another drip of antibiotics.

Another crappy effect of chemo: It breaks down the lining of your mouth, making it extremely painful to eat. I lived off a diet of morphine, ice cream, and pancakes for a very long time!

And my hair... oh god, I miss it so much sometimes. It started falling out around week 5 of treatment, whilst I was between two cycles of chemo and in the hospital for an infection. I was devastated. I hated showering and rarely brushed my hair, as masses of my own hair would fall away if I so much as touched my head. I got so frustrated with it that as soon as I was back home and my wigs arrived, I shaved off what was left of my hair.

I then went back to hospital for chemo for eight days straight. Eight days being locked up in a hospital room, attached to a drip through a tube in my chest, unable to leave the hospital ward. It was terrible. My will to live was deteriorating, I was questioning whether the treatment was even worth it. There I lay, passing time by trying to convince myself I was asleep, seeing double whenever I opened my eyes, hairless, weak and bored to the point of insanity. I can't tell you how many times my parents bought me McDonalds—partly because the hospital food was so grim, and partly because even they hated sitting within those four walls for the whole day!

My Personal Experience...

The worst part wasn't the drugs. It wasn't the toxic chemicals simultaneously destroying my body and saving my life, nor was it the knowledge that I could potentially drop dead at any moment. I wasn't scared; I was just going through the motions, seeing it as just another inconvenience.

The worst part was the people who looked at me judgmentally for wearing a black hoodie with the hood up on the hottest day of the year, struggling to breathe as I walked up the stairs in public—until they took one look at my lack of hair and suddenly understood. It was spending weeks at a time in hospital, unable to leave, with no communication with anyone other than my parents and some nurses. It was cancelling plans last minute because I couldn't get out of bed. One time, I got up to put some rubbish in the bin, and I remember standing in the kitchen, which was right next to my bedroom, and then suddenly, my vision went black, I was shaking, unable to support myself. My dad caught me falling forwards, and he held me up until I could see again and he could help me back into bed.

I hated having to ask someone to help me walk to the toilet, and not being able to stand long enough to make food. I hated being pushed around the hospital in a wheelchair, while everyone else could simply walk. I even hated missing school. I remember asking teachers for work, and receiving sympathetic emails with small attachments, telling me not to worry about deadlines or completing anything. I wanted to do the work. I wanted some kind of sense of normality back in my life—but all I could do was visit hospitals for various treatments.

Childhood cancer is extremely underrepresented, but so intensely important. Especially teenage cancer, which is the rarest. But the teenagers who have cancer are missing out on their education, and sacrificing their social lives, simply to receive treatment so they don't die! It's a lonely, isolating time—seeing your friends going out, running around and having fun, knowing you're not physically strong enough to go and join them.

This article isn't meant to be a sob story; my intention is to write a brief introduction to the world of teenage cancer patients. I survived my illness, but there are so many children who do not. I'm currently in remission, and everything is going well, but even after almost two years, the psychological effects still haunt me.

If you're reading this because you were recently diagnosed, then remember you're not alone. Whatever else you have going on in your life, whatever kind of treatment awaits you, you can get through this. On the days in hospital when you're questioning whether it was even worth it to turn up, remember that you're still alive, you're still fighting, and this pain will be worth it, one way or another. It took me a very long time to realise it, but it's true.

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    • Mahrukh Khalid profile image

      Mahrukh Khalid 2 months ago

      Though I was scrolling by but this article caught my eye. I might not know how it felt for you, but I respect you for mustering the courage to share your story and informing oblivious people like me about child cancer. I hope whoever reads this understands the importance you're trying to get across to us, and work hard one way or another to prevent this from happening to any other child.

      May God bless you!