I wanted to write about the toughest time of my life.
My story (in short) has been told many times over the years, whether it was in a mag, newspaper or interview. But I wanted to share how it truly was, how I truly felt and what I truly went through (and my family and friends).
Even though it’s coming up to 14 years this year, sometimes it honestly feels like yesterday.
I still remember what it was like to have two legs, to never think twice about getting up in the morning and walking to the toilet or shower.
I remember what it felt like to play netball (centre) and have big hopes and dreams of one day playing for Australia (ok that probably would of never happened but a girl can dream) . I remember feeling the same as everyone, at parties, at school , with my highchool bf.
Then everything changed.
For the good part of year 9 and 10 I kept complaining about a pain in my knee, a strange pain, one that my parents I’m sure thought was nothing. It was so painful. If someone was to tap me on the knee for my attention, it would have toppled me over. I told the doctors a few times, and because I played ALOT of sport and netball they put it down to growing pains.
It wasn’t until two years later they decided to do a scan...
Now, we think and we hope that after a scan the results would be accurate. Well, for me, that wasn’t the case. They told me it was a cyst and nothing to worry about and it would go away on its own. Or... I could have minor surgery to remove the “cyst” and have two weeks off school. Two weeks off school with ice cream and jelly sounded pretty cool to me, so that’s what I went with.
Little did I know, that decision would become the reason I’m still here today.
Two weeks later the doctor called and asked both my parents to come in to talk about the procedure for some reason and I have no idea why I felt uneasy. Why would they want us all there?
“I’m sorry, but what we found wasn’t a cyst, but a rare form of cancer called synovial sarcoma".
Now if you could imagine as a child growing up, whenever you hurt yourself or felt sick you always looked at your parents for reassurance. Well this was a day that I remember vividly, looking at my parents, my Mum broken, my dad shocked & asking a million questions that the doctor couldn’t answer (he had never seen my type of cancer before) so for me it was horrifying, I wanted them all (and the doctor to tell me) everything is going to be ok , but the truth was it really wasn’t .
I remember going home that afternoon and letting my older brothers know their younger sister had a rare cancer in her knee. I’ll never forget their reaction. As a younger sister I always grew up being picked on or played with. So to see them shocked and heart broken really upset me.
Little did I know, that the next day I would be faced with the most difficult decision of my life- Amputation or operation?
Well my options were - amputation 4 inches above my knee; or radical surgery to try to remove the rest of the cancer and have several operations including plastic surgery , skin grafts and most likely not a very functioning knee (and high chance not being able to remove all the cancer). I also knew that there was a chance the cancer had spread... so for that I truly didn’t know what to do.
But I remember looking at the doctor and saying “ I would rather die than have my leg amputated “ and walked out of the room. Obviously looking back now that was a very naive and stupid thing to say, but what do you expect from a 15 year old... he gave me a few days to think about it.
In those few days, I had scans from head to toe, I got on google after dad did (that’s all he did for days) and saw the survival rates. And once my body scans came back clear and I realised just how bad this cancer was (pretty much chemo resistance) I decided I was going to lose the leg. After all, I knew the doctors and my parents wanted me to, I knew deep down they knew it was for the best. But don’t we hold on to hope? Hope that there’s a small chance?
One week later he scheduled my amputation. Out of everything, I found those days waiting the hardest. To know I had two perfectly fine limbs that I will walk into that hospital with and I wouldn't be walking out.
The drive to the hospital is one I’ll never forget. But also one I’m very thankful for. I asked my dad to turn the car around a million times, I knew he couldn’t or wouldn’t and shouldn’t! But I was terrified . But it wasn’t until he said "I wish we could Kelly but I’m sorry". I knew this wasn’t just about me, this was about everyone. They would of taken my spot in a heart beat. I knew they didn’t want to be driving their youngest child to lose their leg, so from that moment on I decided to be strong (as strong as I could). I went to the hospital, I stayed strong enough to keep calm and I went in to surgery.
I think it was the longest 5 hours of my parents lives (went pretty quick for me) but I remember finally waking up and looking in the tv screen seeing a reflection of my sheets, and seeing that there was no longer a leg. That was real.
Even though I didn’t spend a lot of time in oncology, I still spent some time there. Not to mention the families who had been at the children hospital for months or years. And for me that's what put things in perspective. I would lose my leg and potentially be cancer free for the rest of my life (I didn’t have chemo because there was no point) but there were lots of kids that would never get to leave.
I decided that this was it, my leg wasn’t growing back, I’m never going to change what my life was now, so for me it was about moving forward. I spent a week in the royal children’s hospital, and although it was hard, it was made wonderful by my family , friends and staff.
Those days changed me forever, and I believe for the better. I had a long road ahead with rehab, learning to walk & adjusting to life. But this unfortunate situation has made me into the person I am today. I don’t believe it happened for reason (I don’t believe anything does, I think if you tell that to someone who’s lost someone or been through something so difficult it’s inconsiderate and well...don’t) it just happened. And it happened to me. But that’s life. And it can be real shit sometimes.
But 14 years on, I can truly say I’m ok. There are days when I struggle and there are days I sometimes ask why. But we all have battles, big or small and I think the more we support people, the more we realise how shit things can be then we can find peace in knowing that someday it will eventually feel ok. I owe so much to my Mum & Dad, not just for putting up with my tantrums, but for standing by my side through absolutely everything. I know it must have been the most difficult time in their lives (sometimes I wonder if it was harder for them than me) but they stayed strong and pushed me to pursue everything I wanted.
To anyone going through something similar, please feel free to message me, and for anyone who has been diagnosed or knows someone diagnosed with a rare cancer please visit rare cancers website, maybe one day there will be no such thing as a rare cancer.
www.rarecancers.org.au