Sam

Throughout my entire life I have found myself looking for the ultimate rush and it wasn’t clear to me until I sat and thought about it, that I had already experienced the ultimate rush. In fact I had been through it without even realising. It had struck my life like a steam train striking a wandering beast!

I had tried many times for the ultimate rush. For example I would climb on top of the light posts above an oncoming VLine train, and lie there while the fast moving train would crash its way down the track and disappear into the horizon. But that wasn’t enough to calm my desire to have the ultimate rush. This new venture was an out-door education class. Throughout the course I found myself facing severe injury or even death. Like abseiling – sailing down a 30 metre rock face, climbing a sheer rock face on the side of Mt. Sugarloaf, white water rafting down the Goulbourn River and the adventure of the rope course at Rubicon.

Finally I decided to try Bungee Jumping which gave me a feel of the rush I was looking for. I can’t really describe what I felt as I jumped from the 220 foot tower. All I know is my heart nearly jumped out of my chest.

From then on I still continued looking for the ultimate rush, trying various other activities.

Later I realised, it was April 1994, I faced the ultimate rush like never before. That’s when my life changed dramatically as I had just found a new girlfriend and my life couldn’t get any better. It didn’t, but for reasons I would never have expected. I was due to go into hospital for a biopsy on my left shoulder, which had been giving me trouble for a while. The doctors suspected I had a cyst in my shoulder. Well, that’s what they told me anyway.

I remember being injected with a general anaesthetic to put me to sleep. I woke up about 40 minutes later. It feels funny waking up after anaesthetic, as you feel like you’re really heavy. Once I was able to open my eyes, my first sight was my parents. They were looking at me with tears in their eyes. I didn’t know why they were crying. I thought there was no reason to cry. All I had was a biopsy. I asked them what was wrong but they didn’t reply.

I was taken back to my room, where I still had no answers. Finally my parents told me why they were so sad. They told me the doctors had found cancer in my shoulder blade. “Cancer? What are you talking about? I don’t have cancer, I can’t have cancer. Maybe the doctors are wrong!”

It was like I was in a big tunnel. Every thought in my head was echoing. I thought I was going to die. ” Oh my god, what about my girlfriend”. The thought suddenly hit me. What would happen between us? Would we stay together? How was I going to tell her? I could no longer hold in my emotions and tears rushed down my face. Then I realised that I had no way of contacting her, because her step dad didn’t allow it and her phone number wasn’t in the book.

The doctors soon came to speak to us about what type of cancer I had and how they would treat it. I had Ewing Sarcoma, a bone cancer. As they told me I drifted off into my own little world, where all I could think about was what I was going to do. How was I going to tell my friends? What about school? Would I continue to go even when I had lost all my hair because of the chemotherapy?

A while later I walked a slow, thoughtless walk to the telephone in the corridor. I rang my friend Peter, who answered the phone. And as I thought of what to say to him I started to cry. He thought that I was laughing but when I told him what I had he grew silent. I can only imagine how he felt, shock was probably the main thing.

Sometimes I ask him how he felt when I told him and he says he can’t explain and I leave it at that. As I rang more of my friends the word about me started to get around. People like to gossip. Pretty soon even the people at the football club that I played for found out and soon I had family and friends come and visit me. I can remember all of their facial expressions. They all looked shocked and they all didn’t know what to say. Most would just stay silent and give me a kiss, a hug or just a smile. I don’t blame them. I mean what could they have said that would have made me instantly better and able to leave the hospital, because that’s all I wanted to do.

I was showered with all different types of balloons and chocolates. I still slowly began to feel better as more people began to speak more freely. I still hadn’t told my girlfriend. That was the one thing on my mind. It was getting late and as the last of the visitors left I told my parents to go home as well, they were looking tired. I lay awake for a long time with tears in my eyes. Finally I began to close my eyes leaving my worries of that day behind and forgetting about the day that would follow. I didn’t dream.

The next day I woke to find my parents beside me. I was to have a Port-a-cath inserted, under my skin running up to the central vein in my throat. They would use this the following year to pump all the chemo drugs into my body. I was to have it removed later, in January 1996.

At about 10:30 the phone rang in the ward and it was for me. It was my girlfriend’s mum. She said that Elizabeth, my girlfriend, had rung my house to see how I was and my grandfather had told her that I had cancer. She had run to her room crying and her mum asked her what was wrong. She told her but she was too upset to ring me at the hospital. She also had no idea what to say. Her mum told me that they were coming to the hospital. They arrived soon after. Her mum came in and said hello, then left us alone. Elizabeth was standing in the door. She didn’t say anything, she just walked up to me and we hugged for a long time. We didn’t speak much. I think it was because we both didn’t know what to say to each other.

I was shifted into a new ward, which would soon become my second home for the following year and a bit. There were a lot of young children with different types of cancer and every time I came back for treatment I would see new faces with the same sad and distant facial expressions. If I close my eyes and think about the hospital I always see a little girl’s face. She was one of those new faces in the ward when I had returned for more treatment. I can remember waking up during the night and seeing the little girl just sitting up in her bed alone. She looked so scared. It’s a face that I will never forget. It’s hard to explain.

Anyway, I finished my first treatment, which made me very sick in the stomach. The drugs would have this effect on me every time I had treatment. I returned to school two days later, but I only went to visit. Everyone in year 10 had been told about me in an assembly so when I got to school a lot of people would stare at me not knowing what to say. Even my friends didn’t know what to say, they just spoke of other things. Then when the day came when I lost all of my hair I took up the nickname of Casper (the ghost) as I looked like a ghost. Also people who I had not seen for a while didn’t recognise me. They would also just stare. People like to stare at what’s different. I stopped going out as much during the day, but I went out a lot at night. Maybe because there were fewer people around!

By November the chemotherapy had reduced the cancer in size and the doctors were now able to remove a large section of it, but in doing this they also would have to remove my shoulder blade, the lifeline to the movement of my arm. They explained to me that this was the best option, but they could not confirm how much movement I would be left with. I would only be the second person to have their shoulder blade removed. Fear raced through my mind. I was afraid. What if I could never move my arm again? What would I do?

Soon came the day for the removal of my shoulder blade. I tried not to think about it but it was difficult as my family around me all had tears in their eyes. I was taken into the operating room and put to sleep. I woke about three hours later seeing my family around me. I tried to move my arm. It didn’t move. I started crying as my mum gave me a hug. With tears running down my face I told her that I couldn’t move my arm.

I remained in hospital for a week living purely off pain killers. The doctors came to see me and I found that I had little movement in my arm. It would never be the same again.

Christmas came and went and I talked more about being sick with my friends.

In 1995 I started year 11 and I went through all the staring again, as there were people that I didn’t know. Even when I couldn’t see them I knew that they were staring. It’s not every day you see a walking ghost.

I miss not having the full use of my left arm but I suppose I just have to deal with it, as there is nothing anyone can do. I stopped having treatment on the 15th of June 1995 and my hair has grown back good and strong. I have my olive complexion back also. When I got my first haircut we had a party in my honour. When I looked in the mirror that night I could see my old self again.

Now when I look back at my experience the ultimate rush that I faced was purely death. Thinking that I would die was the rush, a feeling that I never want to face again.

Sam Casilli (2001)

Update

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February 25th 2006 was a very special day for the Casilli family. Sam married Vanessa at St Mary’s Catholic Church in Williamstown. They honeymooned in Lankawi, Malaysia. For us it was a new beginning for Sam, who, on his wedding day, said that he hoped we were proud of him. As parents we could not have felt more proud – not only of his achievement, but of his courage and zest for life.

Julie Casilli