Some moments of my cancer experience are still very prominent in my mind. I hope that in sharing my story I will be able to help someone else through their experience, or help someone to understand what it's like.

Part 1 – The Rock

I was diagnosed with Acute Lymphoblastic Leukaemia in May of 2004 when I was 15 and half way through year 11. I had several of the symptoms for leukaemia, however I had an excuse for every one. Never did I think that I could have cancer. I had severe bruising all over my body, especially my legs but I was in the Rugby League class at school. I was tired, but I worked a lot and played every sport imaginable. I never had a moment spare. There was only one day that I truly felt lethargic, not just tired. When you are just tired if you want to lift your arm you can, but when you are lethargic and you want to move some part of your body no matter how much you try it is just physically impossible.

The only reason that I found out that I had leukaemia was because I had a constant line of pain across my stomach that was always there – a dull ache which at least twice a day turned into a sharp pain that would cause me double over in agony. I didn’t think anything of this, thinking that it was just something to do with my period. This pain went on for about a month and half until one night I woke up in extreme pain at 1am in the morning and my mum took me to the hospital. We waited for several hours and I was finally seen around 7am. I was taken in, they checked me over gave me some morphine for the pain, cannulated me and took blood. Later my Mum and I overheard the nurses saying they wanted to clear emergency for the next shift. So I was sent home at about 9am with suspected appendicitis and if I was to vomit I was to return straight away.

We left the hospital and Mum took me to Maccas. I had pancakes and an OJ. We went straight home after that, and as I was walking up the stairs to my house I vomited over the railing. So, sadly, it was back to hospital for us. We jumped in the car, me still in my PJs from the night before, and we arrived at the hospital at about 10.30am. We waited until about 2pm to be seen again, and were met by a lovely lady who was to be my doctor for the day. She wanted to take blood again but I refused, stating they already took some that morning and I was getting stabbed again. The lady explained to me how they had lost my bloods that morning and if I allowed her to take more she would personally walk them to the lab. (I didn’t believe that she would take them herself but I agreed.)

"I was tired and grumpy and just wanting to go home"

At approximately 4pm that afternoon the lovely lady doctor returned with a grim look on her face. She was no longer bubbly and cheerful. It seemed that light in her eyes from earlier was no longer flickering. I looked at her with concern. She sat lightly, as if floating on the end of my bed, and looked up towards mum and I. Focusing in on my face she said “ Your blood count is this _____ your haemoglobin is this _____ your platelets are this ______ and your white cell count is this ____. We believe you have leukaemia. We are going to send you in the next available ambulance to the another hospital for further testing”.

I sat looking at her. My facial expression did not change. I asked “Isn’t leukaemia cancer?” She replied a simple “Yes”. She then got up from my bed with me following her every move. I could no longer see her deep brown eyes as she was staring at the floor as if she knew how great the fight awaiting me was. She looked up once more before leaving and said “Here is a phone. I suggest you call the rest of your family and let them know what’s going on. It is important they see you”. There where no tears falling from my eyes, I was in shock but couldn’t really think straight.

I turned to my mum who was sitting on my right, phone in hand. I could see the silent tears begin to fall down her cheek. She began to blame herself for my misfortune, thinking it was some how her fault. She then began to call my family. She refused to tell them anything over the phone and within what seemed like seconds they were all there before me. My mum had broken down by this point. I had cried at her crying but not at the fact that I had cancer. It hadn’t sunk in yet. My dad was strong and positive, saying we will beat this no matter what. My sister wailed. She was crying for me for what I hadn’t yet understood, and my brother stood silent looking into my eyes for a brief moment, then seemed to be looking through the wall seeing something I wasn’t. 

I was then transferred to a different hospital. At 7.45 pm when I arrived I was put into an isolated room and every time I woke I remember seeing a different person. First my mum and dad together, and then my Aunty Barb and then my Aunty Trish and the pattern kept going until 3.30 in the morning when I was moved to the ward. I remember seeing the lights flash by me like in the movies. My first nurse on the ward was Julie. She was a cleaning freak. All I could think was, “Who cleans at 3.30 in the morning?” Well, Julie does.

"The next three weeks went by in a blur"

They felt like 3 or 4 days. Religiously, my father sat by my bed from 7 till 2 and my mum from 4 till late, sometimes even staying the night when I couldn’t sleep. I was lucky in a way - my parents allowed me to make the decisions in regards to my treatment. When doctors would walk in and begin talking about me to them they would stop them and tell them “We are here to listen, you need to tell her what’s going on - it’s her body, her choice”. I think this was their way of trying to stop me rebelling. I was later given the option to change to a children’s hospital because I was only 15, but figured that I started at this hospital and that is where I would finish.

I had the usual complications throughout my treatment. General things like vomiting, mouth and stomach ulcers. Doctors putting local in for lumbar punctures, walking away and then beginning the procedure once the local had worn off. I had a couple of really awesome nurses - Erica, Chassidy, Stu and Aaron. Aaron used to come in when he first started his shift and be all chirpy and say hello and if I didn’t answer in the same happy chirpy way he would continue to walk in and out until I did. One morning I was stubborn for about 45 minutes in the end I got sick of hearing his voice so I did it.

Aaron was the one that explained leukaemia to me, saying that my body was producing cars with no doors (cancerous cells) and since the cars weren’t complete they had to sit in the parking lot but the parking lot was filling up and there was no way to clear it so there was no room for healthy, non-cancerous cells (or cars with doors). Chemo was how you cleaned the parking lot out. He also told me something I thought was so ridiculous at the time and that was that you forget the pain. In a year’s time you won’t even remember what it felt like. This made me angry at the time, thinking how would he know,  he hasn’t had cancer. But over time I realised he is right. I remember that it hurt and how much it hurt but the pain itself I don’t really remember.

Another day that sticks out in my memory is my first day out of hospital. I got a day release and I got to go home. I was lying on my parent’s bed about to ring my best friend, the first time I had spoken to him since all this happened. I called him and asked him if he had heard what happened. He replied “Yes, someone said you were really sick with cancer”. To this I said “Yeah, I have leukaemia. Today is my first and only day out for a while, did you wanna do something?” What he said next broke my heart. I can still hear the tone of his voice and how he trailed off quietly at the end as he said

"I don’t think I can see you without any hair"

To this I was shocked. This was my best friend, the one person who knew more about me than I thought I knew about myself. I hung up and cried for hours, curled up in a ball on my parent’s bed, not knowing what to think. In time I learnt that everyone deals with everything differently. It took years for us to really talk again and it’s only recently that we have really tried to repair our lost friendship. It still hurts but I have to remember that he was 16 and what would I have done if I was in his shoes?

One day during my 4th cycle, I was lying in bed as they were preparing to start my chemo. I yelled “No!”. Mum was sitting in the chair beside me. She didn’t look up and she didn’t move. I continued to go on and say “That’s it. I have had enough, lets get out of here. I’ll pack the bathroom stuff, you can do my clothes”. I just assumed that Mum was going along with what I had said because she had supported my decisions the whole way through. Yet when I stopped to look up at her I saw she was frozen still, her eyes glazed over and her cheeks covered in tears one by one falling on to the pages of her book.

I stood for what seemed like an eternity looking at her, wondering why she wasn’t supporting me and my decision to go home and die. To go for some quality of life instead of quantity for a moment. I was 15 and it clicked that even though I was getting stabbed and getting chemicals put through me every moment of the day, even though I was the one lying in the bed, my Mum, my Dad, my family and friends were still sitting in the room. From that day I realised I wasn’t just fighting for my life,

"I was fighting for my family as well"

Some days it was harder than others to think positive but I knew what was at risk if I didn’t.

I got to the end of my 6th A cycle and I was told that I would need a bone marrow transplant. It was my decision, although they said if I didn’t have one now there was 95% chance that my cancer would come back and that if it did they didn’t know if they could get me to the stage where it would be possible for me to have a transplant. I agreed after many tears were shed. I picked my date. I figured if I’m going in I at least want to feel like I have some sort of control over it, because when dealing with cancer you really have none.

I was originally told that I was a common tissue type and had nothing to worry about, however later, after meeting my donor, I discovered there was only one person in the whole world on the bone marrow registry that actual matched to me. When they originally tried to get in contact with him he was no longer at the address that they had on record. So at that hurdle they continued on to search the rest of the world and came up empty.

From there they went to the electoral roll and tracked him down. Thankfully he agreed to save my life and we have been very good friends ever since. We see each other at least once a year and regularly keep in contact through emails, photos and letters. I will forever be grateful and in debt to him. I planned my funeral at 15 and thanks to him I am not planning on using that plan until I am old and grey.