I had improved a lot, mentally. As strange as it was to admit to it myself, there were moments when I felt really happy. Being around Cass had worked magic. I felt genuine excitement when she came to see me with her little surprises. Less often now I counted the days until chemo was over, instead counting the hours until I could see her again either during my chemo sessions or at home.
She often joined the family for Friday paella night. My parents liked her very much and took comfort in the fact that she had been through so much and seemed to be fine. Like everyone else, they loved the way she was so comfortable with herself and what she had been through. She fit right in and would reassure Mum and Dad that I’d be okay by saying with a grin, ‘Jase is going to be fine, he’s got me annoying him every day.’
One time at the hospital when she knew my mum was going to be there, Cass asked her mum to come in and meet her. Mum and Gloria went off to have coffee and they clicked right away. They had shared the experience of watching a beloved child get diagnosed with a potentially life-threatening cancer and then go through harrowing treatment. They formed a great friendship that day, each finding someone to whom they could pour out their fears and worries and their emotions. They would often get together or talk for ages on the phone, giving each other comfort and support.
Cass loved to make me laugh, and if she could do it while amusing herself, even better. She had around a dozen wigs in all kinds of colours and cuts and lengths, and she would bring them in and put them on me. Of course I looked ridiculous and she found it hilarious. She also loved to rub my head, but not in the calming way my dad did it. She would get her hand on there and let loose that crazy cartoon-villain laugh. I’d say, ‘You’re scaring me,’ and she’d reply, ‘Says the one who’s bald!’
She always wanted to take photos of us together, and even though I felt self-conscious about looking so unlike my usual self, somehow she always got her way. She’d tell me that one day when I was cancer-free we’d look back on these shots and reminisce about the old days when I looked like an alien. Then she’d pull up pics on her phone of her own head when it was completely hairless and I’d say, ‘You’re the hottest bald girl I’ve ever seen.’ Only when she said, ‘Ha, thanks, Jase, you make a pretty good bald yourself’ would I add, ‘Of course, I’ve only ever seen two other bald girls. My head’s a fashion statement. I have style!’ It wasn’t sparkling wit, it was just regular teenage teasing and mucking around and it made the hours fly by.
I still had bad days with the needles, especially when Cass couldn’t be there. Even then, though, she was only a text away. One day the nurses were having such trouble getting a vein that I felt like a pin cushion. I looked like one too, thanks to the small bits of tissue paper they put on each unsuccessful attempt to stop the bleeding – they were all up and down my arm. I texted Cass: I CAN’T DO IT ANYMORE, MAN.
Her reply came straight away. WHAT’S UP, SPUNKY?
THEY CAN’T FIND A VEIN, IT’S A BLOODY MESS OVER HERE (NO PUN INTENDED).
AWW, WELL, WHAT IF I COME OVER THERE AFTER WORK AND GIVE YOU A BIG SLOBBERY KISS. WILL THAT MAKE YOU FEEL BETTER?
EWW, COOTIES!
Those few silly texts were enough of a bright spot to get me through. When she could be there to hold my hand as I was getting a needle, I pretended it didn’t hurt in an effort to impress her. She always made a fuss of me, saying, ‘Wow, look how brave you are now!’
No matter how I was feeling, she would lift me. It was funny thinking back to her first visit to my home, because now when she came through that door with her arms out and a big smile on her face I couldn’t resist smiling back on even the worst of days, and I loved her big hugs. She believed you should never go anywhere empty-handed, so I would have a childlike sense of excitement to see what she would have brought to entertain or tempt me. If she was seeing me on a chemo day, she might have a new game to show on her iPad. If it was a non-treatment day and she thought I’d be able to keep food down, she would bring homebaked cookies or Portuguese tarts or the over-the-top Krispy Kreme donuts I had a weakness for. No matter how many times a week she saw me, she always did something that could transform my whole day, and because of her thoughtful generosity it almost never failed.
When I was up to it she would ask if I wanted to go out to lunch. The first time I said yes, she took me to an Asian restaurant. I have to admit, I was completely against the idea. I thought I hated Asian food – my preferred cuisines were Italian and Spanish, and nothing else could get a look in. But Cass knew how to put me into place, telling me, ‘You’re sheltered, man, I need to get you out from under that rock.’ And when I continued to complain, she added, ‘Suck it up, princess, I’m driving so you have no choice.’
Of course when we got there and I actually tasted the food it turned out I liked it, just as she’d said I would: ‘I’ll give it to you, Cass, this satay isn’t too bad!’ I should have left it at that, but when she suggested I try coconut water I felt bold enough to say yes. She watched me take my first sip – unfortunately, that meant I couldn’t spit it straight back down the straw! Wanting to please her I said, ‘Mmm, this is good too,’ then went, ‘What’s going on over there?’, pointing out the window so I could grimace and gulp the rest of it down as quickly as possible to minimise the pain of drinking it. What I wouldn’t have given for a handy pot-plant.
On those rare occasions when our goofing around or Cass’s carefully planned gestures didn’t work and she saw me start to slide into despair, she would get serious: ‘Stop fighting against your reality, Jason. What’s done is done. There is no going back, it’s just a waste of energy. Instead, be wiser and make it into something worthwhile. Stay positive and accept that whatever happens, happens for the best.’
I thought a lot about that and found myself thinking, Well, if it meant going through all this I got to really know Cass, then it wasn’t all bad. If you’d told me back when I got diagnosed that I could feel that way about anyone or anything, I’d have said you were flat-out crazy. But Cass didn’t just bring some much-needed perspective into my life, she brought me joy at a period when there seemed nothing to be joyous about. She loved me at a time where I was most unlovable. She saw something worthwhile in me when I was at my resistant, complaining, self-pitying worst. If I hadn’t had cancer, I would never have felt that incredible acceptance and I would probably never have discovered just what a special person she was.
One night after a shower at the end of my third chemo cycle, I noticed brown marks on the skin around my shoulder and elbow. They looked almost like stains, as if clothing dye had come off on me. I tried to wash them away with a soapy flannel but they didn’t budge. The next time I went in to see my chemo team I asked them about it. They told me the marks were ‘chemo burns’: the chemicals going into my system were so toxic that they were basically damaging my skin from the inside out. I thought about the marks running along Cass’s spine. I, too, was building up battle scars.
For all the progress I was making psychologically in dealing with treatment, there were physical side effects that began to get on top of me. I’d had yet another stint back in hospital after developing a new infection. So far I hadn’t managed to get entirely through any of the three cycles without that happening. I’d lost 20 kg and all my muscle tone was gone. Thanks to a combination of ‘chemo brain’ and sleep disruption, my short-term memory was shot and often I couldn’t even remember what day it was. My sleep cycle was completely out of whack. I would wake up in the middle of the night convinced it was morning, and I was half-asleep much of the time. Previously, if I had to get up during the chemo treatment to go to the bathroom I wheeled the IV pole alongside me; now I was back to the state I’d been in after my initial surgery, leaning on the pole to keep me upright.
But the nausea was the worst. The medication I’d been given couldn’t control it. It felt like someone was living in the middle of my chest and kept wanting to come crawling up my throat to remind me they were there. I spent entire day
s on my hands and knees, unable even to sit without triggering a vomit. It felt so bad that I remember saying to Mum in between heaves that I couldn’t stand much more of this, that I’d rather live with the cancer than keep going this way. Not long after, there came a night at home when the retching sensation was so bad I couldn’t catch my breath. The more I tried the worse it got. Panicking, I gasped for help. My parents came and were eventually able to calm me down enough so that I could breathe again, but it was upsetting all round.
During this time Cass developed a very bad cough. No-one who has had cancer takes chances, so she went to the doctor to get it checked. Her immune system was still compromised, even though she’d finished her treatment well over a year earlier, and she had developed a lung infection. Both her doctor and mine said we should not see each other until she was well. She was upset at being ill, but in typical Cass form she made it all about me. We would phone each other to talk, or I’d message her asking how she was feeling and she would reply with something like: I CAN’T WAIT TO GET RID OF THIS SO I CAN COME CHILL WITH YOU AND RUB YOUR HEAD :D or I HOPE YOU FEEL BETTER, YOU POOR BUGGER. I CAN’T WAIT TO GIVE YOU A BIG HUG AND KISS XX
Maybe it was a lack of vitamin Cass, or maybe I got stir-crazy knowing the end of my chemo treatment was within sight and in all likelihood I would then have surgery to get through – whatever the reason, I was finding it really hard to stay positive. It was the last week of the fourth cycle and I only needed to have two more needles, one then and one in four days’ time. But my veins had gone into hiding and the nurse had no luck getting the needle for the cannula in. It became so bad they called in a doctor, who finally managed to get it in when I was just about at the end of my tether. But when I came back for what was supposed to be my very last chemo session I lost it even more badly than I had way back on the second cycle.
It didn’t start well. As with any hospital, you were seen by whichever nurse happened to be on shift. The cancer care centre nurses are specially trained and I’m sure they’re all dedicated, but I found that some seemed to be able to do what was needed with minimum pain. So when I arrived, with Dad to support me as always, I asked for a nurse who’d managed to get the needle in smoothly first go each time I’d had her. She wasn’t on, and I’m pretty certain my asking for her offended the nurses who were. They assured me they were all highly qualified and could do the job. But the nurse who ended up trying to find a vein just couldn’t get it.
I felt teary even before she started. She kept jabbing into my arm with no result other than pain, and no amount of toe wriggling on my behalf was helping. Another nurse came over to have a go, and it didn’t work any better with her.
I was getting increasingly agitated, despite their efforts to get me to calm down. They told me the third nurse would have a turn and I thought, Screw this. I undid the tourniquet, got up and stormed out. Dad hurriedly spoke to the nurses and the doctor and told them what they already knew: I wouldn’t be having my treatment today.
Dad came and found me and persuaded me that we needed to call the oncologist and fill him in. The oncologist told Dad it was really important for me to have that final day of treatment: that was a crucial dose. He said he would organise for the nurse with the golden touch to be assigned to me. Dad thanked him profusely, but when he reported all this to me back home I said I didn’t care, I wasn’t going back and that was that. Mum gave me a comforting hug and said, ‘We would like you to do it, but it has to be your decision.’
I went back. The treatment centre was packed that day and the nurses who had been there for the last attempt were pretty wary of me. Dad explained that the specialist had organised for a particular nurse, and that didn’t do much to warm up the atmosphere. She was working on another ward, but she’d been briefed about what was to happen. They called her down, and when she arrived I immediately felt more relaxed. She chatted away to me very easily and as she was doing so she slipped the needle in first go, without even a twinge of pain. I thanked her and told her she was amazing, and she warmly wished me luck and headed back to her other duties.
One more time the poisons went into my body, on their mission of killing something even worse. After four hours it was all over. I was done with chemo and it was done with me. Something came over me as we left and I found a huge burst of energy. I practically ran to the car, urging Dad to keep up, saying, ‘Let’s get the hell out of here!’
Chapter Seven
Every true love and friendship is a story of unexpected transformation. If we are the same person before and after we loved, that means we haven’t loved enough.
– Elif Shafak
My oncologist wasn’t thinking only about my physical health. He understood that my freak-out during the last stage of chemo was a sign of real distress and he had a practical suggestion to help. This would end up leading me in a whole new direction.
He referred me to the Sydney Youth Cancer Service, which is a collaboration between the Sydney Children’s Hospital and the adult-oriented Prince of Wales Hospital. It was what I’d been searching for – a place for people my age, with doctors and counsellors who understood what it was like to find out you were possibly going to die before you felt you’d even had a chance to live. It covered patients aged 15 to 25, which was perfect – because even though at 19 I was legally an adult, I had much more in common with a 17-year-old than I did with the 60- and 70-year olds with whom I’d shared a hospital ward.
It was also an eye-opener because it operates out of the Kids Cancer Centre in the Children’s Hospital. The first time I went there and saw all those tiny kids with cancer, it was quite shocking. In many cases, they were too young to understand anything much at all about what was happening to their bodies, or why their family’s whole life had been turned upside down. If I was struggling, what must it have been like for them?
Over the next four weeks, while I was waiting for my appointment with the specialist urological cancer surgeon at Westmead Hospital on the other side of Sydney, I made fortnightly visits to the Youth Cancer Service. I knew Cass had been treated at the Children’s Hospital and I asked a few people there if they remembered her. It seemed that no-one who had encountered her – doctors, nurses, counsellors – had forgotten Cass. They all talked about how special she was, how she never complained even during the worst of the surgeries and the treatments, and how she always wanted to make those around her feel better.
One of the nurses said to me, ‘Cass did it tough, but she never showed it. Instead, she would comfort the other kids or ask us how our day was going. She was a very brave and selfless girl.’ I told her I couldn’t agree more – Cass was my hero. Everyone I spoke to asked how she was doing and were so happy for her when I told them she was feeling good and enjoying her job, that she’d started studying Marketing at TAFE and hoped to be able to study it further at uni. Invariably, they asked me to pass on their best wishes.
It was thanks to these conversations that I understood once and for all how harrowing Cass’s experiences had been. Even though on her first visit to my house she’d painted a picture for me of what she’d been through, she didn’t fill in all the details of how excruciating it had been and she certainly didn’t talk about just how exceptionally bravely she had endured everything that was thrown at her. It was only here I learned about how much stronger her chemo had been than mine. Unlike me, she’d been so weak she hadn’t even been able to push the wheelchair she was confined to, let alone walk out like I had done.
I thought again how incredibly lucky I was that Cass had decided to take me under her wing. She would have been the last person in the world to turn her cancer experience into some kind of competition, but even so I was more appreciative than I had been before about how patient she was with all my complaining. What I was going through was really tough, no doubt about it, but it paled next to what she’d been subjected to. Yet amazingly she hadn’t told me to shut up, she’d just listened and coaxed and sympathised with and encouraged me.
&n
bsp; Right around this time she replied to a text in which I’d been talking about how hard everything was. She wrote:
I KNOW HOW BAD IT IS AND HOW SICK YOU ARE FEELING BUT YOU’RE ALMOST THERE. YOU HAVE DONE SO WELL. YOU NEED TO KNOW HOW PROUD I AM OF YOU AND THAT NO REGULAR PERSON COULD HAVE GONE THROUGH WHAT YOU HAVE. DON’T FEEL BAD FOR WHINGEING. YOU ARE ENTITLED TO WHINGE AS MUCH AS YOU WANT. I’M JUST REALLY SORRY YOU HAVE TO GO THROUGH ALL OF THIS.
That girl made me want to live up to her faith in me.
One of the people I met on these Sydney visits was the wonderful Dr Antoinette Anazodo. She had come to Australia from England, where she’d worked in cancer centres just for young people. When she was made Director of Adolescent and Young Adult Cancer for the two hospitals in 2010 she could see how much a special Adolescent and Young Adult program was needed, so she set it up. Over the past few months I’d met a lot of medical professionals who really cared, but Antoinette was something special. She wasn’t only trying to help the patients who came through the centre but she also wanted to change the whole approach to youth cancer care across the board. When I talked to her about what a tough time I’d had in hospital and how much I had wanted to be able to talk to someone my age who was going through the same thing, I could tell straight away she really, truly understood.
Antoinette told me that the approach used in Australia for young people with cancer was about 15 years behind what other countries, including the UK and the US, were doing. She described the dedicated centres that had been set up in those places where you still got the very best medical care the system had to offer, but it was done in an environment that aimed to be a million miles from a traditional hospital set-up. It looked as much as possible like somewhere you’d actually want to be. Even in the inpatient wards, the walls were painted bright colours, the curtains around the beds featured funky designs and there were sofas for parents to sleep next to their kids. In the outpatient areas, there was cool-looking furniture where you could hang out and talk, and game consoles and places to watch movies together.
By Your Side Page 11