By Your Side

by Jason Carrasco

  ‘How long has she had it for?’ he asked.

  ‘Since she was 16, so about two and a half years now. She’s had three brain operations, but you should see how positive she is, and they say that really helps, right?’

  He looked at me with sympathy. ‘I’m sorry, Jason, but you’re going to have to accept that your friend is almost certainly going to die and it’s likely to be very soon. In fact, her still being okay at this point is quite remarkable.’

  Hearing these words, Mum began to cry. I reacted by going deep inside myself. If I avoided eye contact with him or didn’t listen to what he was saying, maybe I could convince myself it wasn’t real.

  As I had done at the Alessandro Del Piero event, I saw in my mind’s eye a series of images of Cass and me together; I could see her beautiful smile and almost feel the hug and kiss she gave me every time I saw her. When he knew I was ready to listen again the doctor gently continued, telling me the story of Chris O’Brien.

  O’Brien was a famous Sydney surgeon who specialised in removing head and neck cancers. Unlike Charlie Teo, he spent his career working in the public-health sector, treating patients there. He was considered a world leader in his field and was known to many thousands of Australians as one of the surgeons featured on the TV series RPA, which captured the experiences of people at Royal Prince Alfred Hospital, where he ran the Sydney Cancer Centre. In 2006, when he was 54 and at the height of his career, O’Brien was diagnosed with a malignant brain tumour. The people around him – patients and medical staff – saw this as a horrible irony, but he wouldn’t have any of that. He said that around 33,000 people a year are diagnosed with cancer in New South Wales alone, so him becoming one of them wasn’t freakish at all.

  As a doctor he was a huge believer in the power of both patients and doctors staying positive. He said doctors had to be honest with their patients but they must never, ever destroy a patient’s hope. He underwent various treatments, including multiple brain operations (he chose Charlie Teo as his surgeon), and he remained strong and continued to hope for the best. But he knew his chances were slim because of the type of cancer he had.

  This is the part that made me want to curl into a ball with my eyes and ears closed: Chris O’Brien had a grade four glioblastoma multiforme. Of all primary brain tumours, it was the most aggressive and had the poorest prognosis. ‘It has a very, very capricious reputation for being, you know, relentlessly lethal – not absolutely 100 percent inevitable, but statistically the odds are weighted strongly against me,’ he said. But still, he added, ‘You don’t accept the statistics. You say, “Well, within the statistics there’s hope,” and you seek every treatment that will be of benefit.’

  He said those things in 2007, less than a year after he had been diagnosed, when he was having his third brain surgery. He survived until June 2009, dying just over 30 months after he’d been diagnosed.

  Chris O’Brien was optimistic, beloved, an expert in treating brain cancer, and had the best, most cutting-edge treatment available, but still he died from the disease. I didn’t want to take in what my doctor was telling me, that Cass too would die, but there was nothing I could say that would change the truth.

  This can’t be real, I thought, Cass is only 19. I’m going to lose the only girl I’ve ever loved.

  Eventually I recovered myself enough to ask another question. I described Cass’s episode a couple of months earlier: ‘She couldn’t walk or talk properly for months because of pressure on her brain from the tumour. Will it come back in the same spot? Will that happen again?’

  ‘There’s no way of knowing for sure,’ the doctor replied. ‘It could come back anywhere; however, I’d say there’s a strong probability of it recurring in the same spot. And of course the brain controls everything, so wherever it recurs the effects are likely to be devastating.’

  I wiped away my tears as I thanked him, and Mum and I left his office. Outside she gave me a big hug and said, ‘I’m so sorry, Jason.’ Mum and Dad had come to love Cass in their own right, but they also understood the extra special bond between the two of us.

  The drive home was completely silent as I tried to process what I’d heard. I was angry, despairing, defiant and desperately sad, all at once.

  The silence was broken by my phone’s text-message alert. It was Cass, checking to make sure everything had gone okay at the doctor’s. I replied, EVERYTHING ALL CLEAR.

  She texted back, I’M SO HAPPY FOR YOU! WEOWW!!

  It was impossible to accept that this beautiful girl was going to die and nothing could be done about it. I’d survived a potentially lethal cancer and so had hundreds of thousands of other people. And Cass was no ordinary person. Everyone deserved the chance to live, but didn’t she deserve it more than most? Of course I was biased, but wherever she went pretty much everyone she met was unusually taken with her. Her warmth, compassion and generous soul touched everyone. She made a difference for the better, every single day. How was it possible that all of her goodness would not be rewarded by a miracle?

  But, as much as I fought against the idea, I gradually realised I had to accept the truth – Cass was already living on borrowed time. Who knew when the tumour would come back or how quickly it would incapacitate her. If none of us could save her, I had to do something to at least tell the wider world about this extraordinary girl. We’d been so excited about working on a book together, but for the first moment I realised that was unlikely to happen: Cass probably wouldn’t have enough time to see it through. The thought was like a dagger in my chest.

  My mind raced, trying to come up with another approach. I wanted to tell her story to as many people as possible but especially to other young people who might be inspired by the way she had faced adversity. How could I do that? The answer came to me in a lightbulb moment at university.

  As the start of the 2013 tertiary year had approached and I’d felt confident I would be well enough to continue studying again, I’d begun to think about exactly what it was I wanted to achieve in my life, professionally. Having cancer had changed so much about the way I saw the world – it wasn’t surprising it changed my ideas about my career, too. Studying Commerce was all well and good, but I found that now I wanted to do something that could make a real difference. I thought back to Chris Reason and how his story had helped me and, no doubt, many other people as well. I decided that what I really wanted to do was become a journalist so I could tell meaningful stories around health and wellbeing, and inspire other cancer patients the way he had inspired me.

  So I switched courses and enrolled in a Communication and Media degree. Among my choices was a subject called International Media Studies. It was actually a second-year option, which I shouldn’t have been able to take as a first-year student, but thanks to admin and timetabling quirks my name was accepted on a student list for it.

  I’ll admit that the first couple of weeks presented a pretty good case for why I should have waited to tackle the subject: with no grounding in the topics being discussed, I quickly lost focus and let my mind drift. To be honest, I paid so little attention I couldn’t really tell you anything about what was discussed in those tutorial lectures. But when we began a strand examining the strategies charities and not-for-profit organisations use to engage potential supporters, I was suddenly riveted.

  We studied the ‘Make Poverty History’ campaign and analysed its effectiveness, then we watched videos designed to raise awareness on a range of other causes. We talked about them in our tutorials, with the tutor, Nicola Evans, asking us to go round the group one by one and say whether each video had made an impact on us or not, and why. Different campaigns affected different people in different ways but some of them really hit home, triggering a strong emotional response almost across the board.

  It hit me that I could use those techniques for Cass’s story. By filming her, I could take her smile and her strength to the world. Even if they were getting to know her on film rather than in real life, people would be able to see ho
w amazing she was. I didn’t have any experience or any specialist equipment, but I did have the burning desire to document as much of Cass’s life as I could. I hadn’t figured out exactly how I could use whatever footage I got, but I was filled with urgency. This was my new mission.

  I hung about until the other students had left and then asked Nicola if I could talk to her for a few minutes. She must have been expecting me to ask about an assignment because she looked a bit taken aback when I started pouring out Cass’s story: how I had this special girl in my life who had inspired so many people including me during my cancer experience, and how all the experts said she was going to die and how I didn’t want that to happen, but if I couldn’t save her I wanted to tell her story, but at any time she might lose her ability to talk and think clearly … and … and … Out it all came in one huge rush. Nicola listened carefully and I guess she found my sincerity touching because she responded by telling me that she could relate, as she knew people who had the same disease.

  It was clear that I cared deeply about my friend, but what I hadn’t explained was why I was telling my tutor all this. She asked me now, ‘So how is it you want me to help?’

  I had to admit I hadn’t figured that part out yet but I told her the idea that had come to me during class, about filming Cass. Then, in one of those wonderful synchronicities that life presents you with sometimes, she told me that her sister, Kerinne Jenkins, was a freelance writer and director of short films, adding the magic words, ‘Would you like me to put you in touch?’

  I was so excited by this that even before I spoke to Kerinne I needed to capture some of my ideas on paper. I put everything down on my computer at first, but my mind was fizzing and I had to see all the bits on one page. So I raced out to a nearby newsagency and bought the largest sheet of project cardboard they had. I wrote all over it: thumb-nail sketches for anecdotes about how Cass had helped me during treatment; stories about other young cancer patients she had inspired; lists of celebrities whose lives had been affected by cancer and who might be willing to help us; inspirational sayings that had a connection to Cass and her outlook.

  I just loved my inspirational quotes. They were like speaking directly to the great people of history and receiving personal wisdom and encouragement from them. I read the ones above my bed every day and never failed to feel lifted by them. I felt like I had a responsibility to make a mark on the future by getting Cass’s message of hope out to the world. Even if she could not live on in a physical sense, her words and her spirit could. It was my duty, my goal, my mission to make it happen.

  Over the next couple of days I wrote and wrote. When the front of the sheet was full I wrote on the back, and when that was full I went back to the newsagent’s and got more. The project needed a name and I knew the perfect one: CASNAS, the opening letters of Cass’s first and last names, and one of the nicknames she’d had in her school days. I went through my daily routine as normal, but the whole time my brain was occupied by Project CASNAS. I’d never in my life felt so determined to make something happen.

  True to her word, Nicola passed on to her sister everything I’d told her and indeed Kerinne was interested – she offered to drive down from Sydney to meet with me. The three of us sat down together in the UniBar. I liked Kerinne immediately. She was very understanding and clearly knowledgeable in her field. She, too, was taken with my story and, like her sister, didn’t judge me for my naivety. I told her that I was sure all I had to do was turn a camera on Cass and her personality would shine through and blow everyone away. I wasn’t certain what form the footage would take, but I liked the idea of ending it with shots of other people, including celebrities I had on my list, sharing their favourite inspirational quote and featuring the hashtag #CASNAS. Then all I needed to do was make the video go viral.

  Kerinne gently explained that there is no magic formula to ‘make’ a video go viral and you can’t force it. It happens because people respond in a genuine way to whatever you’re showing them. If it’s funny cat footage and it makes the viewer laugh, they’ll want to send it on to friends because it’s likely to also amuse those mates. If it’s a heartfelt video about a cause, people will forward it because it tells a story and makes them feel that, by acting, they really can make a difference. The only ‘trick’ is that the message you send has to be real or no-one will bother to watch it, let alone forward it.

  She also explained to me that, in this kind of film, two minutes’ worth of video might be put together from hours and hours of raw footage, so the more I could film Cass the better. I could use my camera phone or any other decent quality equipment I could get my hands on. She said I could just film our everyday activities or, if I felt confident enough, I could try to ask Cass to speak about things that were important to her and that interview questions might work as a prompt for this.

  In Kerinne’s view, the way to make my idea really take off would be to have some kind of #CASNAS event where people could come together and celebrate Cass’s philosophy, and that I’d need to put a lot of thought into what that might be and how it might work. I could do that while continuing to gather as much footage as I could. When I’d made some progress, we could talk more about how I could take it to the next stage and whether she would be able to help with that.

  Impatient as I was, I learned that it was a much slower process than I could ever have imagined. But over many months as I tried to make my idea a reality, hitting hurdles, stumbling and trying again, Kerinne was a source of endless encouragement and advice. I can never thank her enough.

  Even though Project CASNAS was occupying so much of my headspace I said nothing about it to Cass, for two reasons.

  First, despite my passion, the idea wasn’t yet fully formed and when I told her about it I wanted to have a really clear outcome in my mind so I could answer the questions she would probably ask. It might make all the difference between her agreeing or not.

  Second, I didn’t know how to bring it up without being able to explain my sense of urgency as I had done to Kerinne and her sister. No way on earth could I ever talk to Cass about the likelihood that she was dying. Cass was all about hope. How could I give her the message that I thought hope was futile and that I believed the doctors who said she had already outlived expectations? No way. Never.

  Cass certainly wasn’t entertaining thoughts of giving up. Her sense of humour was as strong as ever and she loved to post funny, sometimes wry, often cheeky comments on Facebook, like this one from April, ‘So, waking up this morning I had a green juice then about an hour later I had some oats, instantly throwing it all up. What I want to know is, how did the juice come out first?’

  If she did ever refer to death it was only to make a joke, like the post not long afterward when she wrote, ‘Been sleeping all day & still feel like shit. Ah chemo, you’ll be the death of me!’

  The novel The Fault in Our Stars, about two cancer-struck teens coming to terms with mortality and love, had come out the previous year and was becoming a real word-of-mouth success but it somehow never made it onto our radars. But we didn’t need fiction to be reminded of death and dying. The reality of it was very much on my mind, thanks to both Cass and Dylan Tombides.

  Dylan, the football star who had generously reached out to reassure me in the lead-up to my abdominal surgery, had worked incredibly hard to get his fitness back and be ready to play in the 2013 Under-20s World Cup. But the cancer had not only returned – it had spread to his liver. He hadn’t given up, he was back on chemo and talking about being well enough to play internationally again before the end of the year, but the signs were very bad. I was devastated for him and his family and terrified that the same thing was lying in wait for me.

  This fear and uncertainty felt like even more reason to get going on my project. My 20th birthday was fast approaching and I resolved that I would get through that and then tell Cass about my plans. I felt like I needed to celebrate after everything I had been through, and a party would be a good way to th
ank everyone who had been by my side on treatment. We’d have about 50 people over and Dad could cook his famous pizzas – the ones he’d been so keen to serve the previous year. How long ago that seemed.

  A couple of weeks before the big day I sat down in my kitchen with Cass to finalise the arrangements. We were chilling out, listening to music and chatting happily, when a text message came through to my phone from a girl I knew. Cass picked up my mobile, saw who it was from and pulled a face but said nothing. I didn’t think any more of it but then I showed her the Facebook guest-list I’d created, and when she saw the same girl’s name on it she started sobbing. I was so surprised I didn’t know what to do at first. I’d seen Cass go through the most awful, painful medical experiences but I’d never seen her like this before – she was really crying her eyes out.

  ‘Cass! What’s wrong?’ I asked.

  She pointed to the sheet of paper. ‘Why are you talking to this girl? Why is she invited to the party?’

  I had no idea what was upsetting her so much. I replied that after I’d recovered enough from my treatment to start socialising again, when Cass was in the US and afterwards, I often used to see this girl when I was out. She would always come up to me and ask how Cass was doing. That meant the world to me because my favourite thing was to talk about Cass, and this girl obviously cared about the answers to her questions. Every now and then she would send me a casual text and I would reply. That was it. It was the absolute truth, but it didn’t seem to get through to Cass, who continued to cry with her head in her hands. I stood up and went over to give her a cuddle, but she shrugged me off, saying, ‘No! I don’t want a hug!’

  When she was able to talk again she explained that she’d had history with this girl. She really didn’t like her and there had been friction between them since primary school. I told her that of course if I’d known that I would never have invited the girl but there was no way to uninvite her now, not without looking incredibly rude and starting some huge gossip-fest. I told Cass that I’d stick with her at the party and she wouldn’t have to interact with anyone she didn’t want to.