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The Story of the Big C

Defeating Leukaemia - Sharing my Experience of Fighting off Cancer during Childhood

CW: This article discusses the topic of cancer which may be distressing to some readers.

Me (left) and my bestie of 20 years (right) 2004; the calm before the storm.

In the beginning…

There’s 17 years of tea to spill about living and surviving cancer so let’s dive straight in.

My name is Emily, I’m now 22 years old and I survived cancer. People have not encouraged me to talk about having cancer, in fact the very opposite. However, now after finding encouraging friends, and confidence in myself and my story, I feel that I can talk about this without feeling weird about it.

This post isn’t going to include loads of technical medical jargon you have to google because I was literally 4 and can’t remember all that kind of stuff, except the odd thing, so sit back and enjoy reading my experience of childhood cancer.

The year was 2005, I was 4 years old. The whole diagnosis began by having an allergic reaction to the pre-school boosters, specifically the MMR vaccine. My arms swelled up and I vividly remember a doctor drawing arrows all over them.

The memory after this is a little foggy, remember I was only 4, but I then somehow got diagnosed with Acute Lymphoblastic Leukaemia. Whether the vaccine triggered the cancer to wake up from lying dormant within the system or what is a mystery, as we found out nobody really knows how a person ‘gets’ leukaemia. Not that I know of, we still don’t really know what causes childhood leukaemia.

I live in the Lake District and the closest cancer unit was 2 hours away at Newcastle RVI. So, popping across to Newcastle to go to hospital was my life for the next 2 and a half years. I left primary school for that time too, so missed all the basic education that people didn’t think would impact a child but it’s there on the syllabus for a reason so must be important and not to be missed.

However; this didn’t seem to be the case for my education story as after defeating cancer I was placed back in the same class I had left a few years earlier and expected to catch up on my own. No help, no extra lessons, no support, not even when joining secondary school was there any support. We asked, they said no, they don’t do anything like that and if you want any you’ll have to pay for some externally. I even remember the slap in the face in sixth form of them telling me ‘you’re socially mature, you just need to work on being academically mature’ like you know my history, why would you say that!!!

But I proved them all wrong despite no encouragement academically and managed to get some decent GCSE’s, some ok A levels and a pretty amazing degree! This wasn’t enough for me though, I felt like I was split in half, the person I was before cancer and after, more about this later.

The Cancer years…

I had chemotherapy. Even as a four-year-old noticing your hair fall out in huge clumps was enough to realise something is very wrong here, this is serious. I knew I was ill but I don’t think I realised how ill I was, apparently I nearly died twice through infections but obviously I don’t remember nearly dying, lucky me.

One very traumatic thing I do remember is having a ‘line’ permanently attached to my chest, to feed drugs into, which happened regularly but one day I was attached to the machine with a big long wire and a nurse walked into it, tripped over and almost ripped the whole line out of my chest… You can imagine the tears. This line then got infected with e-coli and had to be removed. One scar accounted for. They then put in a removable one, which needed a giant needle to stab back into the chest, on the other side. Another scar.

The last story I feel like I should include is a tale about paralysis. The one thing I’m allergic to is Metoclopramide, which I was administered as an anti-sickness drug to counteract the chemo effects. However, having this intravenously meant I got a full wack of it and then found out I was allergic. One minute I was fine, colouring in a colouring book, the next minute my chin was stuck to my chest and I couldn’t move my neck. The antidote was administered and a few hours later I could move again. Very strange feeling to be unable to move your neck. The annoying thing is if you google ‘metoclopramide paralysis’ nothing comes up, I even had a doctor (orthodontist, I believe) a few years ago say ‘that’s not a side effect of that drug’ well it happened so I don’t know what more I can say!

Being in the hospital as a child at Christmas time with cancer is definitely not fun, but as you can see below, the staff at Newcastle RVI did everything they could to make it as festive as they could given the circumstances!

Christmas 2005, spot me in the bottom left corner

It makes you feel very frustrated when doctors don’t know your medical history until they decide to look it up. If you go to a local doctor, they will not look at your medical history, I always have to tell them why I need a certain thing done. I have to have a heart scan to check there’s no damage to my heart every 5 years, trying to explain this to a doctor who just thinks oh it’s an average 22 year old ringing me up, is very annoying, like no I have this huge medical file, please read it before you treat me.

Some slightly fun little stories to end this section on because sometimes making light about how ridiculous a situation is, can be more healing than not speaking about it at all. When you have cancer you get used to the long, boring time of waiting for results, it can take hours. If you’ve had or have cancer you’ll know what I mean. However, how did my parents keep a 5 year old occupied you ask? One word; Gameboy. Even nowadays I highly recommend getting a Gameboy to pass the time during long waits, it’s very handy for keeping you occupied and the battery lasts for ages!

Another little story, every Tuesday I’d have a chemo session. At the time I would call the drug that puts you to sleep ‘magic milk’ because it was a white substance and put you to sleep, obvious right? A great name for it from the mind of a 5 year old. These chemo sessions involved an injection in the base of the spine to go up to your brain to protect it from the cancer. Sorry I don’t know all the technical aspects, that’s just what 5 year old me knew about what was going on! After these chemo sessions, getting wheeled back to the ward, my parents would have a few strawberries to make me feel better and get the taste of chemicals out of the mouth! So top tip, after chemo, get yourself some strawberries!

The aftermath…

I always wanted to be a doctor to give back to those who helped me during treatment and I think pre-cancer me would have been able to smash through school and education with top grades and have the easiest time. I know this is really random to think, but there’s some evidence beforehand that this could have been the case as I was put into the class above me to learn there as well as in my own class. I had a really great friend who I've known for 20 years now (pictured below) and she really helped me get back into living in the real world and had my back so that was very kind of her, no wonder we have been friends for so long!

Me (right) and my bestie (left) 2005

Anyway, going through school with the general stuff a teenager has to go through, as well as dealing with all cancers side effects wasn't fun of course. I remember being in year 7 and I happened to mention I had cancer to a classmate (because they asked), and because the attention wasn’t all on this one girl, she decided to say ‘you shouldn’t be proud you had cancer’. Kids are ruthless sometimes! After this I didn’t really think or talk about cancer until year 11 where I began to become more self aware. Trying to google what happened to you when you have limited memories and used to rename the drugs and machines as fun little names isn’t easy.

So connecting with other cancer survivors and people still affected by cancer through MindlessMag has been life-changing. Getting the chance to talk to other young people affected by cancer is so reassuring and really does make you feel less ‘weird’ and like you went through this trauma that nobody will ever understand!

I don’t know if this is interesting for anyone, me sharing my random stories but I hope some people out there can relate. I’ve never had the opportunity to speak to other young people who survived cancer in their childhoods and remembered things from it like this. So, if you’re out there reading this and have had a similar fun time like me, I’d love to chat with you and share experiences, I have plenty more fun facts, more than can be included in this article, to share!

Thank you for reading!


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