By Your Side

by Jason Carrasco

  Keeping up a brave face, I kept reminding myself that I was going through this in order to stay alive. My choice was endure it or give up and accept death, and that was no choice at all. I just had to get through it. I could see the nurses appreciated the effort I was putting in, and in turn they would do anything they could think of to make it more bearable. A nurse called Kristi, for instance, made a point of using the smallest bore needle and always found a smiley-face band-aid to put over the puncture wound. They were little things, but they made a huge difference.

  I became much more reserved about my cancer, and isolated myself from everyone, thinking, No-one could possibly help or understand me. I would just stay angry at the world and believe that I could fight this thing myself. That was until Cass appeared in the midst of doubt and showed me that burying fears and bad thoughts wasn’t the answer. Recognising them, letting them go and replacing each one with a positive thought was the way to be. But it would take a lot of practice, and I was a very long way away from achieving her calmness.

  By the end of Day 4 of the cycle I was exhausted, but before Dad could take me home there was a consultation with my oncologist, Associate Professor Mori Aghmesheh, in his rooms, 15 minutes’ drive in the opposite direction to our house. In front of him were the results of the CT scan I’d had before starting this cycle, as well as my daily blood tests. The news wasn’t good and he gave it to me straight, ‘While the chemo seems to be working, the tumour in your abdomen isn’t shrinking.’ He explained that if a teratoma didn’t shrink but remained after the cancer cells had been killed off, it could degenerate into another cancer. He asked me to lie down for an examination. Feeling my belly he said, ‘I’m sorry, Jason, but that’s going to need to come out. It’s the only way.’

  Dr Aghmesheh explained that this meant retroperitoneal lymph node surgery, RPLND for short. It was a big, big operation – far more complicated than the surgery I’d already had. The reason it was necessary is because testicular cancer generally moves through the body in a predictable way. Once in the lymph nodes, if it’s left untreated it goes upwards and outwards: to the lungs, liver and brain. This is something no-one wants to happen. The lymph nodes where all this starts get the ‘retroperitoneal’ part of their name because of their location: behind the major organs that are located in the abdominal cavity.

  First of all, the surgeon would make a cut from just underneath the breastbone to a little way above the pubic bone (skirting the belly button). Having opened the patient up, there are then a whole lot of things in the way before he or she can even see the lymph nodes, so what they do (don’t read this while you’re eating) is pick up the intestines and other organs and shift them out of the way, often ‘parking’ some of them on the outside of your body. They remove the tumour and all the lymph nodes that are connected to it. If they see any other affected areas, they may remove these as well. Then they carefully put everything back into position and close the wound up.

  If all goes well, the surgery usually takes between three and six hours, but it has been known to last for 20 hours where there are difficult complications. As well as the usual risks that come with any major surgery, including infection and reaction to the anaesthetic, there is the risk of damage to the bowel and other organs, which could cause ongoing problems. The scar is massive and, of course, permanent, and recovery takes months.

  Dad asked Dr Aghmesheh what would happen if I didn’t have the operation. He replied that although the tumour was no longer being ‘fed’ by the cancerous testicle, all it needed was for one active cancer cell to remain and it could spread through the body. In his view, this was just too great a risk to take. He wrote out a referral for a specialist surgeon based at Sydney’s Westmead Hospital. The surgeon would order some more tests and then, if he agreed with the oncologist’s assessment, he would do the operation.

  It was almost impossible to absorb this news. I reacted by withdrawing, not really meeting anyone’s eyes and barely speaking. I’d thought chemo was absolute hell but now there was this. I was barely 19, how could anyone possibly expect me to deal with it all?

  We came out of the rooms and walked back to the car. I had shut down. I didn’t talk, I didn’t cry, I just put one foot in front of the other like a zombie. The quickest way home was along a freeway, where the speed limit varies between 80 km/h and 100 km/h. We were flying along in the left-hand lane when something inside me snapped. I thought frantically, I can’t do this. I can’t handle it. I’d rather be dead than go through that operation. I wasn’t aware of doing so, but apparently I started to shout out, ‘NO, NO. No more tests. I can’t take it.’ Then I undid my seatbelt and reached for the door handle, intending to throw myself out of the car.

  Somehow, Dad’s reflexes were quick enough for him to reach over and grab me just as I started to open the door. He pulled me back in and managed to avoid smashing into any other cars, although in swerving over to the side he hit a culvert and damaged the front tyre as he came to a halt. I kept my eyes down but I was aware of Dad staring at me. Ever since the night I was diagnosed he had stayed positive, doing everything he could to make me laugh. He would talk to me about how I would definitely play soccer again when all this was over and he would help me get back to form. But now he was angry. Really angry. I understood. Not only could I have hurt myself, I could have killed us both. And, almost worse, I was giving up.

  He said, ‘Don’t do this to your mother. Don’t do this to your family. There are thousands of people out there right now who are dying and wish they could be you and have a chance at life.’

  I mumbled, ‘Every year something bad happens to me. When is it going to end, Dad? I just want to be normal.’

  ‘Do you think your cousin Mitchel wanted to die? What would he think of you right now? I’m sure he would have given anything for just one more day. He didn’t have that chance, but you do. You can’t give up now. We’ve come too far. Do it for your cousin, do it for your family and do it for yourself. We will get through this together.’

  I started sobbing, as though I would never stop. Dad said, ‘Put on your seatbelt.’ I did and after he had checked the tyre was okay to drive on, he pulled back out into the traffic and continued towards home. Not a word was spoken.

  Dad’s words really resonated with me. It made me see that I was actually one of the lucky ones. It was time for me to take responsibility and face up to reality. But my internal roller-coaster was at full throttle and by the time we got home 15 minutes later I was upset all over again. When Dad stopped the car I ran inside and went up to my room. Dad followed me and stayed outside the door to make sure I wasn’t going to do anything else stupid. When he heard me call Cass, he felt reassured enough to go back downstairs.

  I couldn’t bring myself to tell Cass what I’d done for fear of what she would think of me, but finally I admitted to her that I was struggling, although I didn’t admit how much. She told me I could get through it and I pretended to believe her.

  After what felt like hours I went down to get something to eat. Mum hugged me so tightly and said, ‘I am sorry for what’s happening to you, Jason. I love you.’ But I was still angry and sad. I told her I just wanted to be alone and went back up to my room. Dad said to me he would be sleeping on the lounge-room sofa that night in case I wanted to talk at any point, no matter how late. I knew, of course, he was mainly doing it so he could stop me should I try to run away or do something I’d regret. I went to bed feeling completely defeated and utterly hopeless.

  The next morning Dad called my treatment team at the hospital and told them what had happened. Quite rightly the impulse to self-harm is taken very seriously, so I was immediately readmitted as an inpatient for my own protection. Over the next few days I was seen by a social worker, a psychologist and even a doctor who specialised in treating young people. They would come to me in my ward, or if I was up to it I would go and see them in their rooms. They got me to open up about what I was feeling and gave me strategies to cope. It helpe
d for a little while, but none of them seemed to stick. I just kept coming back to the feeling of absolute loneliness and isolation, with no one I could relate to. These professionals tried their best to help but I kept thinking to myself, What you say is all very well, but you’ve never been a teenager with cancer, so in the end you really can’t understand or help me.

  The chemo routine was back in full spin: blood test, cannula insertion, fluids for hydration, three bags of chemo chemicals and another bag of hydration fluid. I kept going further and further into myself, reaching a really dark place, until early one morning, when Cass messaged me as she did every day, I let fly.

  HEY HEROOO, she wrote – a silly greeting she often used to try to make me smile, HOW’S EVERYTHING??

  I texted back, I DON’T WANT TO DO THIS, CASS, THIS IS FUCKING BULLSHIT, MAN. I CAN’T STOP VOMITING. I’VE GOT THIS DEATHLY COUGH. THE NURSES ARE STABBING AND PRODDING ME AND I JUST CAN’T TAKE IT ANYMORE. NAH, SCREW THIS, MAN, I’M DONE WITH IT.

  She replied straight away. I KNOW HOW MUCH THIS SUCKS, JASON. DON’T BE SILLY, YOU’RE ALLOWED TO BE UPSET AFTER EVERYTHING YOU’VE BEEN THROUGH. THAT’S TOTALLY NORMAL. BUT YOU CAN’T GIVE UP, JASE, YOU’VE COME SO FAR ALREADY.

  NOW I MIGHT NEED THIS OTHER OPERATION – CAN’T EVEN DEAL WITH THIS ANYMORE.

  OH, I WISH I COULD TAKE YOUR PAIN AWAY, JASE. I JUST REALLY WISH YOU DIDN’T HAVE TO GO THROUGH THIS. BUT I’M GOING TO COME VISIT YOU AND MAKE IT ALL BETTER :D

  I pulled myself together enough to text, NO, CASS, YOU’VE ALREADY DONE ENOUGH FOR ME, IT’S FINE. I’M GOOD NOW.

  I still hadn’t learned that you couldn’t say no to Cass. She wrote, I’M ALREADY COMING AND YOU CAN’T STOP ME.

  YOU DON’T EVEN KNOW WHERE I AM.

  I KNOW YOU’RE IN WOLLONGONG, AND THAT’S ALL I NEED TO KNOW.

  Sure enough, she went to the hospital’s front desk and found out that I was in the oncology ward. She arrived just before the day’s chemo was scheduled to begin. I hated to wear pyjamas or hospital gowns, so whenever I was physically able to, I made a point of getting dressed in normal clothes including shoes, even if I wasn’t planning to go outside the ward that day, so at least I was fit to be seen.

  When Cass walked in I was getting more and more agitated at the thought of how difficult it would be to get the day’s new cannula in, working up to a real drama by the time the purple-clad nurses got to me. I started going on about how I didn’t want to do it and it was going to hurt and all the usual complaints. But then I saw a whole new side of Cass. She wasn’t going to let me get away with anything.

  ‘Stop being silly and look at me,’ she demanded. There was something in her tone that made me shut up and do what she said. She took control, saying to the nurses, ‘He’s ready for the needle now.’ The nurses did the last bit of preparation before the injection, and as they did Cass said to me, ‘Take your shoes off.’

  ‘What are you talking about?’ I said in astonishment.

  Just at that moment the nurse whose job it was to check all my details as part of the treatment protocol asked, ‘What’s your date of birth, please?’

  I opened my mouth to answer and Cass said, ‘Take your shoes off, Jason!’

  Unable to figure out what exactly was going on, I went into autopilot mode: my mouth reeled off the answer to the nurse while I tried to kick off my shoes. One nurse put the tourniquet around my upper arm to get the veins to pop. ‘Squeeze, please,’ she instructed.

  I hated this because next came the pain. But before I could start down that mental track Cass was in the ear on my other side, demanding, ‘Wiggle your toes.’

  What the hell was she talking about? This wasn’t the time to be playing silly games.

  She said again in a no-nonsense tone, ‘Don’t look at the needle, just start wiggling your toes.’

  I didn’t want to upset her so I did what she was asking, even though it was clearly ridiculous. I turned to Cass to find out what was going on and the nurse said, ‘All done.’

  I turned back, stunned. ‘What? I didn’t even feel that!’

  Cass said with a big grin, ‘That’s because you were wiggling your toes, Jase. It distracts your mind from the thought of the needle. It’s the oldest trick in the book,’ and she gave me a cute wink. I laughed, and for the first time in a long time chemo felt like something I could handle after all. And Cass was right – these strategies can make a big difference! I learnt that scratching your arm while getting a needle was a good way to distract yourself from feeling the pain of the jab.

  Cass stayed with me, and her company made the hours go by quickly. She’d brought her iPad and we played games and watched Despicable Me. It was her favourite movie and she really wanted me to like it too. No worries there, I thought it was hilarious and over the coming months we watched it dozens more times together – it became ‘our movie’.

  Cass had also brought Maltesers. When she came over to my place that first time she’d chatted about sweet treats, and I’d mentioned they were my favourite. I didn’t think anything of it, but it turned out she’d been working it into the conversation so she could get that bit of intelligence, filing it away so she’d know what might tempt me when the time came. She had it all planned out. As long as I only had a few I could keep them down, and it was amazing how much brighter a little treat can make you feel, especially when it was delivered by Cass saying, ‘You deserve it.’

  From then on, I always wore ‘my Cass beanie’ whenever I had treatment, and every time I had to have a needle I wiggled my toes and had a Malteser afterwards as a reward. Cass’s influence made me happier, and when I was happier I felt less pain. I must have seemed like a different person to the nurses to whom I’d given such a hard time previously.

  On Day 6 of my cycle I was released to go home. Cass came over and said brightly, ‘So, what are we doing?’ My response was, ‘Anything that’s not being stuck in this house.’

  We went for a walk. At first we wandered fairly aimlessly around the streets near home, then we found ourselves at the foot of a large hill. In all the years I’d lived in the area, I’d never been up there. As we approached it I said to Cass, ‘I can’t get to the top. I can barely walk on flat surfaces.’

  ‘Oh, shut up and give me your hand,’ was her reply. I smiled and gave her my hand, and she more or less towed me to the top.

  What awaited us was something beautiful. We were so high up we could see for miles. The view swept around from the expanse of Lake Illawarra on our left to streets of impressive houses ahead of us, then round to the coastline on our right. There was a pavement marker that showed the directions to various suburbs, towns and cities. We figured out where Cassie’s place was and then we realised we could just make out the hospital.

  ‘I’m not going back there, at least not for a while,’ I said.

  ‘Yeah, I think we’re a good distance away from that place,’ said Cassie.

  The top of that hill became our special place and we went there whenever we could. We talked if we felt like it and took funny selfies, and made each other laugh with our loud singing. But sometimes we just enjoyed the silence, feeling the fresh air on our cheeks and listening to the birds sing. There was hardly ever anyone else around – maybe the odd dog-walker passing through, but that was about it. We would sit for hours appreciating the surrounding beauty and letting the peace that came with it wash over us. I had never actually allowed myself the time to really take in a view like this. Before the diagnosis I would have been wanting to kick a ball around up there, or I’d have taken a quick glance and thought, okay, time to move on. I had no idea what I’d been missing out on.

  It was amazingly refreshing to escape from the world for a bit and just breathe. When we did speak, we told each other hilarious stories about what mutual friends had been up to, or we’d list all the things we were going to do as soon as my treatment was over. She’d tell me about a new movie coming out that she wanted to see and say, ‘So hurry up and get better and we can
go together’, or she’d say, ‘My mum made these garlic prawns that you have to try. I’ve already organised with her that as soon as you’re well you’ll come over and have them. Then I’ll make you my Portuguese tarts. You’re going to love it!’ When our ‘heritage team’, Spain and Portugal, were up against each other in big football tournaments we’d banter about whose was better. We talked about anything and everything, except cancer. That could wait until we were back down the hill; it was not welcome in our special place.

  Whenever Cass pulled out her phone to take a photo or check a text message, her picture of us would come up. She’d tease me, saying, ‘Who’s this big head on my screen?’ I’d laugh and respond, ‘I think you mean handsome big head – that’s why you chose me for your screensaver!’ The teasing was always good-natured on both sides and every single time I saw that photo it warmed my heart. It was a simple but incredibly meaningful gesture that made me feel like I mattered in this world.

  The more time I spent around Cass, the more relaxed and happy I became. I had rediscovered my smile. Spending time with her was something I looked forward to and that gave me a reason to get through whatever test or treatment I had to endure. I even stopped worrying about the RPLND operation because it hadn’t been confirmed. I’d have to wait until I was through chemo to see the surgeon and find out, but till then I decided I wasn’t going to worry too much about it.

  Two days after I’d been sent home I was back in the outpatient cancer centre for more treatment, but unfortunately that night I got sick with another infection and had to be readmitted to the ward, where I stayed for a week. It was depressing, but Cass was a big help. She was working at a bridal boutique owned by her brother-in-law’s mother, and would come by every second or third day after work with her big smile and warm hugs. She would also text me daily without fail. Seeing her name pop up on my phone and a message like, HOW ARE YOU GOING? THINKING OF YOU, CUTIE XXX really made my day.