One of the few things that gave me hope was Lance Armstrong’s story (this was before the Tour de France winner was exposed as a doping cheat). A friend had given me his memoir, It’s Not About the Bike: My Journey Back to Life, in which he chronicles his own experience of near-fatal testicular cancer, his struggle to return to health and his joy at being able to become a father. I found Armstrong’s story very inspiring when I was reading the book or actively thinking about it, but it was hard to hold onto any optimism for very long.
I was lying in bed at home, crying, with the all too familiar despairing thoughts going round and round my head when my phone made its text message alert noise. It was Cass.
HEY JASON, HOW’S EVERYTHING GOING? CAN I COME SEE YOU YET?
I didn’t respond but the next day she texted again.
NOT GOING TO STOP ANNOYING YOU TILL YOU LET ME COME SEE YOU (:
(I found out later that she liked to do her smiley faces upside down, just to be different.) My failure to reply didn’t deter her. The following day another message pinged in: JASONNNNNNNNN. HELLLLLOOOOOOOOOO.
Feeling better than I had done recently and nagged by guilt about my rudeness in not replying, I finally texted back.
HI, I’M FINE THANKS.
She replied almost instantly: CAN I COME SEE YOU TODAY? I’M IN YOUR NEIGHBOURHOOD.
I was up to sending a text or two, but having visitors? That was a whole different thing. I typed, I DON’T KNOW IF THAT’S A GOOD IDEA, thinking that would be an end to it. But no.
I’LL BE HALF AN HOUR, TOPS. PROMISE.
I really didn’t know what to do, but in the end I decided that maybe saying yes and letting Cass come over briefly was the best way to get her to leave me alone after that.
FINE, COME FOR 30 MIN.
I made sure I was downstairs ready to open the door before my parents, because I didn’t want them making a fuss over the visit. Cass had that huge smile on her face she seemed to have every time I’d seen her. She was wearing a beanie, with no sign of her long black hair. Must have had a haircut, I thought. She was carrying a big bag full of something. She stepped through the doorway, saying ‘Jason, it’s just so good to see you!’ and opened her arms and hugged me.
Well, that was awkward.
‘Oh, hey,’ I replied, patting her stiffly on the back and willing her to get off me.
‘Where do you want to go?’ I asked dully. No Host of the Year awards coming my way.
‘Wherever you feel comfortable,’ she said, beaming.
‘Okay, let’s go to my room.’
The staircase up to the first-floor bedrooms was granite, studded with tiny pieces of quartz. I flicked the switch for the light above the stairs, making the surface sparkle and twinkle. As we walked up, Cass commented on how lovely the effect was. I made a non-committal noise but a few steps later she made another remark about it, in an attempt to keep the ‘conversation’ going.
I opened the door to my room but instead of ushering her in I went in myself and sat on the bed. She came in and sat near me. ‘How are you feeling?’ she asked.
‘How does it look like I’m feeling?’ I answered, angrily. ‘I can’t stop vomiting, I can barely eat, and I don’t know what I did to deserve this.’
The way Cass looked at me I could tell she had experienced exactly what I was describing. She felt my upper arm and said sympathetically, ‘You’re so skinny, Jase.’ She gave me a tight hug. ‘I wish I could take your pain away.’
Her words reached me in a way nothing else had been able to. I thought, Wow, who even says that?
My words tumbled out. ‘I don’t want to go bald, Cass. I want to be going out with my friends every week, not stuck in a hospital ward with dying old men.’
‘I know what it feels like, Jase,’ she said softly.
‘No, you don’t,’ I arrogantly replied.
She took off her beanie, revealing frizzy patches of hair. I was absolutely shocked. ‘We’re twins, Jase,’ she said laughing.
‘But … but I saw you before with long black hair?’
‘That was a wig, silly. This is from my treatment.’
‘I thought you finished treatment ages ago?’
‘I did,’ she said, ‘but it had a permanent effect on my hair.’
‘Is my hair going to go like that too?’ came out of my mouth.
That’s when Cass explained all the things she’d glossed over when I’d seen her at the birthday party. She told me what kind of tumour she’d had, how rare it was and how aggressive, and how, even before she could start chemo, she’d had weeks of radiation so intense that it had permanently damaged the roots of her thick black hair.
‘So is there any chance it will grow back?’ I asked.
‘I don’t think so, and I don’t mind – I like being bald and scaring people like you!’ she said, grinning.
She went on to tell me about the chemotherapy she’d had, like the radiation – it was the strongest kind possible – and how she’d been in hospital for all those months. But she wasn’t complaining or telling it as a woe-is-me sob story. In fact, she was making funny anecdotes of her experiences. She told me about Gloria passing out at the sight of the brain fluid coming out: ‘So we spent the first few nights side by side in hospital beds, can you believe it!’ she said, chuckling away.
She kept laughing as she told me how she had to be fed from a tube and pushed around in a wheelchair during that time, and how pretty much every morning she would wake up and vomit but the feeding tube would make it go all over her face. She shook her head as though the only thing you could do with something as ridiculous as that was to laugh at it and at yourself. I was a bit taken aback by her approach, but another part of me was thinking how much better my own life would be right now if I could find a way to not take it all so seriously.
She leaned over to show me the scar where they’d opened her up to remove the tumour. It was a finger-length dent right in the middle of her head and it sent a shiver through my spine.
‘Can you believe they cut open my skull and put it back together with glue?’ she said, in an amazed tone.
It was so strange to hear Cass speak in that awed manner about something most people would find really terrible. ‘Wouldn’t that really hurt?’ I asked.
‘Yeah, but the morphine they have is incredible. You don’t know what it’s like being high – unless you’re morphine high,’ she said with a wicked laugh.
I laughed too and said I knew exactly what she was talking about, having had ‘self-serve’ pain relief after my surgery: ‘That button can never be pressed enough!’
Next, she showed me the dark line running along her spine and explained how it was a permanent reminder of her radiation treatment. She opened the mysterious bag she was carrying, got out her iPad and pulled up some photos from when she was undergoing treatment. She was in the wheelchair and in bed after surgery, hooked up to a forest of tubes and wires. She was so thin and frail. But what amazed me was that smile in every single shot. How could anyone be that positive, even in normal day-to-day life let alone under circumstances like that?
I had to get my own iPad out – she’d insisted – so she could show me all her favourite games and supervise me while I downloaded them. Her top pick was Shark Bait. She showed me how it worked. The graphics were pretty basic and so was the idea of the game – you controlled a shark swimming in a sea among seals and skindivers, some armed with spearguns. The seals were trying to stay out of your way and the armed divers were trying to shoot you. You were trying to eat them all. When an attack succeeded, there was a spurt of blood in the water. Clearly it was addictive, because Cass said, ‘I played this for days at a time in hospital. I’m pretty sure I’ve got one of the top 10 high scores in the history of the game.’
‘It’s quite gruesome, though, isn’t it?’ I said.
‘Yeah, but I like eating people,’ Cass said then let loose a cartoon villain laugh: ‘Mwahahahaha!’
I felt more at ease than
I had been with anyone for a long time, so much so that I opened up about how hard it was to come to terms with losing a testicle – every guy’s worst nightmare. Her response amazed me: ‘Please! Girls aren’t even going to notice.’ That possibility hadn’t crossed my mind.
There were yet more surprises in her bag of tricks. This time she fished around and came out with a portable hard drive. I asked what it was for. ‘Go get your laptop, there are more than a hundred movies on here, so you never have to be bored in the hospital again – it’s kind of sad that I’ve watched them all,’ she said with a laugh, then added, ‘Have you seen Despicable Me yet? No? Great, we can watch it together!’ It was a really kind and thoughtful thing for her to have done. I asked when she needed the hard drive back. ‘Have it for as long as you want, Jase.’
There was one final thing she had for me: a grey fleece beanie – it was the gift she had attempted to bring me on my birthday. ‘Your head is going to get cold at night and in winter, so you’re going to need to keep it warm. I also got it so you can look good when I take you out.’
I was blown away by the effort she’d gone to. I ’fessed up to my feelings when I’d freaked out on her previous visit: ‘You were always the prettiest girl, Cass, of course I didn’t want to see you on my birthday looking terrible!’
‘And you were always the shy, stuttering one!’
We laughed and agreed that as two former ‘kebab buddies’ the first thing we’d do when I finished treatment would be to go and get a nice greasy kebab together.
Before she left she wanted something from me: a photo together. ‘Put your beanie on, we’re twins now,’ she said. I smiled rather hesitantly while she beamed, in trademark Cass style. ‘Thanks, buddy, you just got me a new screensaver.’
We went downstairs. She had to get going but I wanted to introduce her to my family first. As we descended Cass started to comment again on the stairs – they’d really made an impact on her. She was midway through saying, ‘I just love these st–’ when she slipped. I was right by her side and grabbed her as she went down so she didn’t fall far; she just landed on her bottom and bumped down another step before she stopped.
The poor girl was so embarrassed because my parents and sister, having heard us coming down, were at the bottom of the stairs waiting to say hello. She blushed but got up quickly. Everyone asked Cass if she was okay and she insisted she was and continued as if nothing happened. But I couldn’t stop laughing at the thought that it was her who had made an impact on the stairs. It was the first real laugh I’d had since being diagnosed. It really made my day. From then on, our private joke name for the staircase was ‘the beautiful stairs of death’.
After a brief chat with my family Cass left. I didn’t quite know what to think about Cass and her visit. She certainly made me feel good in a way that I hadn’t felt for so long. And I was super embarrassed about how I’d been acting towards her up until now. I really appreciated her coming, and I thought she was an amazing person. She’d been through the worst, but you’d never know it to talk to her. Cass had the most beautiful, cheerful soul. It was as if having cancer had made her even more of a happy person. Is that even possible? She was my role model: I wanted to be able to find the positive spirit she exuded.
But that night, hours after she’d gone, I started to come crashing down to earth. Face it, I thought. It was really nice of her to have made the effort, but realistically that would be it. She’d shared her story, brought me some practical tools to help me get through chemo and that would be that, I couldn’t expect more of her.
Chapter Five
The best kind of people are the ones that come in your life and make you see the sun where you once saw clouds. The people that believed in you so much, you start to believe too. The people that love you, simply for being you. The once-in-a-lifetime kind of people.
I was so wrong to think Cass’s attempt to connect with me and cheer me up would be a one-off. If ever there was a girl who was going to stick around for the long haul, it was Cass Nascimento. She continued to text me every day. I responded, but I did it in a jumble of mixed emotions. When I was with her I felt really special. Not the freakishly different from us because he has cancer kind of ‘special’ that made me feel so isolated, but really cared about and valued. It sounded crazy, but I could almost say she made me feel loved. The compassion she had shown me was so deep, it was unlike any other connection I’d had.
No-one loved me more than my parents and sister, of course, but their love was riddled with worry and fear, even if they tried not to show it. Cass, on the other hand, talked to me quite matter-of-factly as one survivor to another, because that’s what she expected me to be. I found her attitude genuinely inspirational. And for the first time the word ‘inspirational’ didn’t make me scowl. She was the real deal. She had been through something so bad, so challenging, but she’d come out the other side sunny, generous and optimistic.
Cass meant what she’d said to me about the photo of us in our beanies. She kept it as her screensaver the whole time I was having treatment. When I felt comfortable enough to ask her about it, she told me it was her way of saying, ‘Just because I’m not always with you, doesn’t mean I’m not always thinking of you.’
After our talk I wanted to be just like this amazing girl, but I couldn’t figure out how to do it. I felt like I should try to live up to her grace and happy spirit, but I was so far from that place. I dealt with it by lying. When she texted to ask how I was doing I replied that I was okay, not letting on how hard I was still finding it to come to terms with what was happening to me.
Around and around went my thoughts, pointlessly covering the same old ground. Why didn’t I recognise the warning signs earlier? Why didn’t the doctors do different tests? What caused the cancer to develop? I wasn’t just fighting the disease, I was fighting myself. Eventually I would come to realise that acceptance is the path to freedom. Ignorance and a refusal to accept reality leaves you trapped in your own mind. But, back then, I couldn’t see that.
None of the things I’d used to restore my mental balance before I got diagnosed worked anymore. During high school, especially in Year 12 when things got tense leading up to the final exams, I’d put my headphones on late at night, crank up the music and dance around my bedroom. I would never have done it in public; I made sure my own family were asleep first, and once alone I could really relax and let go. It was fantastic stress relief. But when I tried it after that first chemo cycle it was awful. I was overcome with dizziness just a few bars in and had to sit down.
I had a whole box full of medications to help with the side effects of chemo – anti-nausea pills, anti-constipation pills, pain-relief pills. They worked to varying degrees, though there was never a day when I felt completely symptom-free. What I really wanted was a make-it-all-go-away pill, but it was sadly lacking.
There were better days and worse days, better half-hours and worse ones. Dad shaved my head as he had promised. We recorded it on video and had a nice laugh together while it was happening. That was a good half-hour. But the second chemo cycle was upon me, and now that I knew what to expect, I was dreading it. I didn’t know how I was going to force myself to get through it, let alone two more cycles after that.
Cass sometimes called me her hero in her texts. I loved the thought of that. It would have been great to be a hero to someone who I regarded as a hero myself. But I felt like a fraud. She would never have called me that if she knew how I was really feeling, I thought. If she knew what a big sook I was. So I kept on pretending, thinking I was fooling her.
I tried to pull myself together and got ready to go to the hospital’s outpatient cancer centre for the beginning of my second cycle. I had the beanie Cass had given me on my newly bald head and my earbuds in, listening to a playlist Mel had put together for me. Mel and her boyfriend, Adam, were going to Europe on a holiday they had been looking forward to for a long, long time. When I got sick she had offered to cancel, but I said no way. N
o matter how much I reassured her, she felt bad about going off and leaving me, so she wanted to do something for me before they flew out. She made sure to contact me using Facebook Messenger every day she was away so she could check on how I was doing and let me know I was always in her thoughts, and we Skyped whenever we were able.
The music Mel had left me was another way of showing how much she cared. Various studies, including one done in 2013 by researchers from Brandeis University and the University of Zurich, have found that listening to relaxing music has a significant effect on getting the body’s nervous system back to normal after it’s been stressed. Music worked for me that way, but in lots of other ways too. It became a really important outlet for me to release toxic emotions. It got me pumped up and ready for a long day of treatment – I’d listen to high-tempo songs from Kanye West or the Black Eyed Peas, or electronic dance music with a good drop to build my adrenalin and make me believe I could get through the day.
It was a useful mood-changer when I was feeling down or battered by an endless negative or anxious thought loop. At those times I would choose more sensitive, quieter music, with Sara Bareilles and Coldplay as particular favourites. It matched my mood and helped me cope. And it was good at distracting me from physical pain, too. I could take my focus away from the horrible nausea that came with chemo by either listening to soft, calming, meditative music or something much harder, like Tupac Shakur. While our circumstances were very different, I took inspiration from his lyrics about embracing your struggle and using it to propel you to greater things.
I was counting on my music to help me get through that chemo day much better than I had the last one. Some of the nurses who had been there during my previous freak-out were on shift, and as I walked in I saw them exchange ‘Oh no, here we go again’ glances. I guess I couldn’t blame them; I probably would’ve felt the same if the positions were reversed. But I was determined to stay calm and told myself over and over, You can do this.
By Your Side Page 8