All of that made the kids who had to be there feel a lot less tense and scared and intimidated – and it allowed them to get to know other kids just like them. If anyone doubted that was enough of a reason to build these special centres, Antoinette had an incredible fact: for young people treated in these centres, survival rates increased dramatically over those who went through the usual hospital system. She said to me, ‘Cancer is something you can’t fight yourself, and in these centres people like you and Cass feel like you belong instead of feeling so isolated from the world.’ That’s why Antoinette had made it a top priority to create a centre like this for her patients, and now she wanted to see them introduced all over the country.
In Australia about 1000 people between 15 and 24 are diagnosed with cancer every year. That’s a per capita rate around three times higher than for kids under 15, but it’s not just your chances of getting cancer that are worse in that age group; so are your chances of surviving it. From age 16 up, with certain cancers, your chance of survival halves compared to people 15 and under. And people in this age group have the lowest rate of any age group of being enrolled in the clinical trials that might increase survival – only 8 percent of 16 to 19-year-olds get the chance to do these trials and just half that, 4 percent, of 20 to 24-year-olds. No wonder teenagers and young adults with cancer have been described as ‘a forgotten generation falling through the gaps of our medical system’.
The need for things to change was so obvious, I couldn’t understand what the hold-up was. Antoinette explained that youth cancer centres weren’t cheap and hospitals were already struggling to cope on the government funding they received. This seemed so unfair! No sooner had I learned such places existed and found out what a huge difference they could make in saving young people’s lives than I found out how hard it was to turn them into a reality. There was some good news, she told me – two major fundraising organisations had joined forces to try to do something about the problem.
Sony Foundation is the charity arm of the huge Sony entertainment company in Australia. It focuses on young people and helps them in different sorts of ways, including funding holiday camps for children with special needs; giving major support to the Youth Off the Streets drug and alcohol rehab programs; and sending performers into hospitals to entertain young patients. But the project Antoinette was particularly excited about was a joint initiative between the Foundation and CanTeen. Thanks to high-profile fundraisers like National Bandanna Day, most people are aware of CanTeen, which was set up 30 years ago to support young people with cancer and their families.
These two good organisations had come together to create a project called ‘You Can’. Their target was to raise $15 million to create a network of youth cancer centres around the country, some built from scratch, others as major renovations within existing hospitals. Their goal was a really big one, but if anyone could do it they could. You Can fundraising went on for the entire year, Antoinette said, but the biggest and most glamorous annual event was called Wharf4Ward. Hundreds of people attended and Sony got all kinds of cool artists to come along, with lots of other big-name celebrities there too to help get the largest donations possible.
The event was always held in October – less than four months away. Isn’t it funny the way things turn out? If I hadn’t stormed out of that chemo session, I probably wouldn’t have known about You Can and now Antoinette was asking me to come along to Wharf4Ward with Cass to tell our stories as a way of helping the cause. It was all dependent on what the surgeon said, of course, and what happened with my treatment, but it sounded great to me. I said I’d pass the request on to Cass but I was sure she’d be keen, and if it was physically possible for me to be there, I would.
The appointment at Westmead with the surgeon, Dr Patel, was getting closer. My parents and Mel, who was back from her big trip, urged me to wait and see what he had to say and not try to anticipate negative scenarios, but I just couldn’t stop myself going online and reading as much as I could. It felt like pretty much everything was out of my hands: I couldn’t affect the cancer; I couldn’t affect the tumour; if I did need to have the surgery I wouldn’t be able to control that. About the only thing I did have control over was information. I wanted to find out every single thing I could about RPLND surgery and what it had been like for other people.
I understand why doctors and others say this research is a bad idea – you can find really solid, factual medical information on the internet, but it’s swamped by the horror stories and dire warnings. Eventually, my obsessing over all the terrible things that could happen snapped even Cass’s patience. She got really cranky with me, telling me I needed to put an end to the negative ‘what if’ talk.
‘Do me a favour and stop looking at the internet and delving into survival percentages,’ she said. ‘People may know the odds, but they don’t know you and your fighting spirit.’
I tried, I really did, but the more I looked into it the more unsettled I got. Cass texted:
I KNOW IT ISN’T EASY TO TAKE IT ALL IN BUT YOU’RE GOING TO BE ALRIGHT, JASE. YOU HAVE BEEN THROUGH THE WORST ALREADY, THIS IS JUST ANOTHER HURDLE. YES, YOU MIGHT HAVE A SCAR, BUT THINK OF THE CRAZY STORY YOU HAVE TO GO WITH IT!
Mel tried to distract me. She has always loved shopping for clothes for me and she’d brought me back almost an entire small suitcase’s worth from Europe, including official merchandise from Spain’s Real Madrid team store. Even so, she took me out to buy more just to keep my mind off the upcoming verdict.
Finally the appointment, my own personal judgement day, rolled around. Both Mum and Dad came along. It was a pretty quiet two-and-a-half hour drive to get from our place to the hospital, I was too wound up to chat. We met Dr Patel in his rooms. The first thing I noticed was that he radiated calm. He had a file of notes about my diagnosis and the treatment I’d had, and he asked a few questions about how it had been for me. Then he focused on the film I’d brought with me of the CT scans of my abdomen that had been taken on the completion of my fourth and final chemo cycle. Minutes ticked by as he said nothing, just examined the scans with intense concentration.
Finally he looked me in the eye and told me, yes, I did need surgery, the tumour did need to come out. He explained that the chemo had been effective in killing the cancer but not in shrinking the tumour. It was as if cancer was an invading army, and while it had been forced into retreat the tumour was the base it left behind. Unless the base was removed, it might be the site for the launch of a renewed attack.
He said the scans provided only an estimate of the tumour’s size; this would only be known for sure once they opened me up. He began to add, ‘The procedure is called an RPLND, which stands for –’
‘Retroperitoneal lymph node dissection,’ I interrupted.
He nodded. ‘What we’ll do is …’
Again I jumped in, ‘You’ll slice through my stomach, open me up from my sternum to below my belly button, temporarily remove my intestines out to get to the tumour and remove it.’
He could see that I was on edge and commented kindly that he was impressed with my knowledge. But then he said something that shocked me. ‘I can certainly do this surgery, but your case is a much more complicated one and I will need a vascular surgeon to assist me during the operation. The reason for that is the tumour is wrapped around one of your kidneys. If we are lucky, we will save the kidney but in the worst case you will lose it. The surgeon I will call in is highly skilled. I would not risk this operation without him.’ Dr Patel could see that I was freaking out at the news that I might lose an organ. ‘Don’t worry, Jason,’ he reassured. ‘We take out kidneys all the time. You’ll still be able to live a normal life.’
Mum, Dad and I were all stunned.
‘Am I going to make it?’ I asked.
‘I think so. Every large surgery like this carries significant risks, and we won’t know the precise situation until we get in there, but I am confident.’
Mum started crying. ‘Please save my so
n.’
Dr Patel was sympathetic, saying, ‘I wouldn’t touch him unless I was confident about removing the tumour.’
We spoke for a few more minutes about how the operation and my recovery would unfold. Dr Patel explained that there was normally a three-month wait for his services, but he would expedite things and get me booked in as soon as possible to maximise the chances of preventing the cancer recurring. He then called the vascular surgeon, Dr Vicaretti. As we listened, Dr Patel explained about my case and the planned surgery. He asked if Dr Vicaretti could make time to see me while we were there and thanked him when he said yes. Before we left Dr Patel shook my hand and said, ‘I will do everything in my power to save your life, Jason, and make sure this thing never returns.’
We went straight to Dr Vicaretti’s rooms with the scans and he, too, was patient and forthcoming with answers to my many questions. He explained that between the anaesthetist and their assistant, the two surgeons, the surgical assistants and the highly trained theatre nurses, there would be a team of 12 people working on me. He spoke glowingly of Dr Patel, describing him as one of the best surgeons in the country for this complex and highly specialised type of operation.
Mum hugged me all the way back to the carpark. She tried to make me feel better, saying, ‘Did you notice Dr Patel’s hands? They were so calm and pure.’ As soon as we were in the car, I got on my phone and started researching what it would mean to lose a kidney.
It was a long, silent trip home. When we got there I went up to my room. I needed to be alone and think about what I’d been told, and I wanted to talk to Cass.
While I was upstairs, Mel got home from work. Mum broke the news to her and told her they had to be strong – I did not want to be pitied or have people bursting into tears every time they looked at me. I told Cass my news and she said she would meet me at our special place. I borrowed Dad’s car and headed out. Apparently Mum and Mel were so worried about whether I could handle things that they urged Dad to follow me from a distance to make sure I was okay, but he was wise enough to know that what I needed most at that moment was a little breathing room.
Cass hugged me, then let me spill it all. She agreed when I said it sucked. ‘You’re right, it does, and it’s only natural for you to be upset. But you’ve come too far to give up now. You’re the bravest boy I know and you are a role model to so many people, including me.’
Cass calling me brave? That was the biggest compliment I could ever get. I wanted to live up to that statement, which meant I had to get all my worries and insecurities in perspective.
Things really did shift from that date. Over the next few weeks, Cass took me for long walks around Wollongong Harbour and she encouraged me to talk about whatever was on my mind. I didn’t cover up my bald head, and Cass told me how proud she was that I was being myself. I felt I’d do anything to keep making her proud of me.
There was nothing to do but wait to get confirmation of the surgery date. Finally it was set for August 22, giving me three weeks to get through without going crazy. Football season was in full swing – the perfect distraction. I hadn’t been well enough to see my team (I definitely still thought of them that way, not as ‘my old team’) play all year; it was a great feeling to see their familiar faces again. I felt well enough to join them for their twice-weekly training sessions. It was extra special to take the field with Adrian and Scaz, who had been such strong supports, with my other close friends Tomic and Correia cheering me on from the sidelines.
On my first appearance at training, all the first graders and youth players came to me and shook my hand one by one as a sign of respect. The coach officially welcomed me back and told me not to go too hard, but I was so excited that I thought nothing was going to stop me. That was until we started running for the warm-up and I felt myself getting worn out already.
Physically, those sessions were tough. I felt more exhausted after 10 minutes than I used to feel after the whole 90-minute session. I couldn’t keep up with the other guys and I was annoyed by that at first, even though they never made me feel bad about it. But fortunately my ball skills were still there, and the joy of being back on the pitch with my mates and joking around with them in the dressing room more than made up for any frustration or difficulty. Running around on the field, I really did forget my cares and worries for a while. I felt normal, and after the past few months that was the biggest gift in the world.
My doctors had said that if I was feeling well enough I could play in an actual game, and I couldn’t wait. Waking up on those three days a week – two training days plus match day – I would get a rush of adrenalin when I realised what day it was. Driving me to the field, Dad would dispense last-minute tips just as he’d done before games since I was tiny.
Before every game Scaz and I had a special ritual involving our wristbands. The first time I went back out on the field as part of the squad for a match, he tapped his wristband to mine and said, ‘Still brothers, right?’ It was a tiny moment no-one else would have even noticed, but it meant the world to me.
Everyone, including me, was realistic about how much I’d be able to play when I took the field in a match – 10 minutes was going to be about it. As we approached the end of the match we were 1–0 up. The coach turned to me and asked if I was okay to go on. I jumped up and ran out under the lights. It was a frosty winter’s night and my head was still bald from chemo, but right at that moment I felt no pain. One of my teammates passed me the ball. I lost it almost immediately to an opposition player, but all the old training kicked in and without even thinking I pushed forward and tackled him, winning the ball back. My team was yelling out encouragement as I passed the ball off, then ran around my opposite number, took a pass and shot the ball over to Scaz, who slotted it comfortably into the bottom right corner of the goal!
The whole team ran up, jumping around and hugging me in their shared excitement – they understood how much it meant to me. Sure, to anyone looking on, it was an ordinary Under-21s suburban match with nothing riding on the results, but I don’t think even Andrés Iniesta scoring the goal that won Spain the 2010 World Cup was happier than I was in that moment.
The ref blew his full-time whistle. We’d won 2–0 and I’d played my part. I was grinning from ear to ear. But as the adrenalin drained away, I suddenly realised I was exhausted. In fact, I was struggling even to walk steadily back to the changing sheds. Without needing to say anything, Adrian and Scaz came up, one on either side of me, put their arms around my shoulders and helped me.
I was back again three days later for training, feeling a little bit stronger with every passing week. I made a point of appreciating every moment of being out there because hovering around in the background was the knowledge that I might not survive the surgery, and even if I did there would still be an anxious wait until I knew whether I was truly cancer-free. A lot of us throw around the phrase ‘living in the moment’ pretty freely without really thinking about what it means. I used to be just the same before my diagnosis. But now the full reality of it hit home. When I was out there on that field with my mates, whether it was at training or in a match, I was truly in the moment. It was a precious time.
Cass, supportive as ever, came along to watch the games, including the freezing cold night ones. I could hear her yelling encouragement from the sidelines and it spurred me on even more. I’ll admit it, I wanted to impress her. I felt like just one of the guys, but apparently my pale head shone under the lights. I got a couple of comments from players on other teams about how it wasn’t the smartest time of the year to shave my skull. I didn’t usually bother trying to explain. Cass loved to tease me about it and from her, of course, that was fine.
The challenge was to keep my mind off the surgery during the hours of the week I wasn’t playing football. Cass and I went out walking, climbing up to our special spot on the hill to get away from it all, and she made time to come over and watch movies with me every week. I also went back to the Youth Cancer Service. While I w
as there I talked more with Antoinette, who said that maybe I should try to capture some of my experiences on paper – perhaps write a book about what I’d been through could help other young cancer patients. And Cass might like to work on it with me, as a joint project?
I thought this was a great idea and couldn’t wait to talk to Cass about it. When I did, she was just as excited as I was. She went home and texted: I SERIOUSLY CAN’T WAIT TO START WRITING SOMETHING. I TOLD MY MUM AND SHE THINKS IT’S A REALLY GOOD IDEA.
I wanted to make sure she understood that I would never have contemplated doing this kind of thing if it hadn’t been for her. I wrote back:
THE TRUTH IS, CASS, THAT THANKS TO YOU I WILL NEVER BECOME A VICTIM OF CANCER. YOU’VE CHANGED MY PERSPECTIVE AND I WANT TO FOREVER BECOME AN ADVOCATE AND HELP PEOPLE, LIKE YOU HELPED ME. SO YOU SHOULD THANK YOURSELF FOR THE BOOK!
We decided we would start as soon as I was feeling well enough after the operation. Having a tangible goal like this was something to help me stay focused and positive but it was a day-to-day battle, and one I didn’t always win, as some of the other texts between us in those weeks clearly show.
Cass: YOU’RE ALLOWED TO BREAK DOWN AFTER EVERYTHING YOU’VE BEEN THROUGH. YOU’RE ALLOWED TO BE EMOTIONAL, BUT YOU’VE ALREADY COME SO FAR AND IT’S JUST 1 MORE HURDLE YOU NEED TO JUMP BEFORE YOUR RECOVERY.
Jason: IT GETS ME CUT THAT I HAVE TO DO THIS BUT IT WILL CHANGE ME. I THINK – LOOK HOW MUCH OF AN AMAZING PERSON YOU TURNED OUT TO BE!
By Your Side Page 12