By Your Side

by Jason Carrasco

  My return to work was going well, and I was looking forward to being able to move to three days a week as my stamina built. Twice a year or so, all the trainees were moved to a different section to give them experience across the entire organisation, and after I’d been back at work for a couple of months it was time for this shift. I was interested to find out how the new section worked and enthusiastic about the opportunity to learn. My new boss seemed a bit standoffish but I thought maybe he was just waiting for me to prove myself. I didn’t think twice that he knew my recent history from my personnel file; he was my manager so that seemed perfectly reasonable.

  But he just didn’t seem to warm to me. In fact, even though we sat very close to one another in the open-plan office he barely spoke to me, instead getting his personal assistant to pass on messages or allocate tasks. The work I was given was very mundane stuff but I figured that was fair enough. After all, I was a trainee and that meant starting at the bottom. I kept my head down and worked hard and productively each day.

  After I’d been there a couple of weeks it was time for the section’s monthly meeting. This was a chance to catch up on our overall progress, assess what we’d been doing right as a group and figure out what could be improved. There were around 40 people in the section and the meeting was for everyone. I got there in good time, equipped with a notepad and pen, eager and ready. My boss, who was running the meeting, walked around the full table handing out agendas.

  He skipped over me, but at first I just thought he hadn’t brought one for everyone and some people needed to share. Then I realised I was the only person who hadn’t received an agenda. I didn’t want to make a fuss, so I figured I’d ask one of my neighbours if I could look at theirs. Before I could do this, my boss opened the meeting by saying with a nod in my direction, ‘For those who don’t already know, Jason is new to our section. Jason has cancer. What was it again – testicular cancer, wasn’t it, Jason?’

  I was so stunned I couldn’t speak.

  He barrelled on, ‘Anyway, I’ve spoken to the HR manager and we have come to the conclusion that Jason can’t really do much due to his condition. So everybody take it easy on him. You’re not needed for this meeting, Jason. You can wait outside in case anyone comes into the department or we get a phone call.’

  I was so gobsmacked, I didn’t know what to say. Trying desperately not to cry, I pushed my chair back and and just about made it to the door before the tears came. I phoned Mel, who happened to work in the building next door, and she came straight over to give me some big-sisterly love and support. But I felt so humiliated I couldn’t stop sobbing and told Mel, ‘Why can’t people see I HAD cancer, not have?’

  Mel called Dad and, with me becoming more unintelligible, explained what had happened. To describe his response as fury is an understatement. He wanted to rush in there and confront the bloke in no uncertain terms. But he kept hold of himself and said we would talk it through later. In the circumstances, I didn’t wait for the meeting to finish but instead agreed with Mel when she said I should come with her and then she could take me home.

  When Dad arrived we were able to discuss it in a calmer manner, and it was clear I had to do something – that kind of treatment was unprofessional and unacceptable. I would file a complaint with the HR department when I got back to work the next day.

  I’d texted Cass asking her to come over, telling her very briefly something bad had happened at work. When she arrived and I started to describe the events in detail I got upset all over again. I was crying in her arms, saying, ‘Why can’t everyone understand that I am the same person and I can do the same things that I could before?’

  ‘You can’t let these people get to you,’ Cass said. ‘You’re better than them. Look at the person you’ve become: I’m so proud of you!’ I couldn’t respond. Cass looked around my room, as though she was searching for something. She came across a wall that I’d filled with inspiring quotes, which I’d printed out and stuck up. She knew I loved waking to see these pearls of wisdom or reading an uplifting message when I was down, so she went over and read, ‘A tiger doesn’t lose sleep over the opinion of sheep.’ Then she turned to me and said, ‘Be the tiger, Jase. You know that we are different. We’ve got to embrace it because it’s what has happened to us that makes us into everything we are today and what we will be in the future. Different is good, normal is boring. We know better than to let people like this get to us.’

  Her words made such a big impact that I was feeling much better when she gave me a hug and kiss, as usual, before going home. The beauty of great quotes is that it’s meaning is left entirely up to the reader. And the right quote at the right time has an amazing ability to transform your mood.

  When I returned to work the following week I put in my complaint to the HR department. Several colleagues made a point of coming up to me and saying how uncomfortable they were with what had happened in the meeting, some of them had also spoken to HR about it. The HR people looked into it and came to the decision that they would give my manager a warning about the incident but would keep me in the same section.

  I understood that this conversation had happened, but days passed with no acknowledgement of any problem from my manager, let alone an apology. I started to get really pissed off. Finally I said to him, ‘Can I talk to you in a meeting room, please?’

  ‘I’m a bit busy now, how about we schedule it for another day?’ he said dismissively.

  But I stood my ground. ‘No, it’s urgent.’ At this, he turned and walked into a room and I followed.

  I tried to ensure that I remained professional while still leaving him in no doubt how I felt. I began with, ‘I just wanted to say how disrespectful it was the way you spoke to me in the meeting.’

  ‘Yes, I have spoken to HR about it,’ he replied, ‘however, I disagree with that assessment. I wanted all my staff to know what was going on.’

  Was there really no getting through to this guy? ‘Let me tell you something,’ I told him. ‘I am no different to any person who walks into this room. I am not defined by who I was yesterday or what I have been through in the past. I am defined by the person I am today.’

  When he continued to look at me without a shred of understanding, I lifted my shirt to reveal the huge scar on my abdomen. ‘You see this? I suffered for six months recovering from this. If you knew any of the pain I went through, then maybe you would think twice about insulting or degrading me about my cancer.’ He just stood there, staring, speechless. I sighed and tucked my shirt back in and left him to it.

  In the days and weeks that followed I tried to forget about the incident and just get on with my work, but he made that impossible by making a point of communicating with me even less than he had before. It was a very uncomfortable situation and I went again to the HR department. They moved me to a different department, and while that should have meant a fresh start I knew the rumours were swirling around about who I was and why I’d had ‘special treatment’. It made me both sad and angry to know that in this case it wasn’t cancer that had left me marked, it was the way certain people responded to it. How many times must this be happening every day to people right around the world?

  Chapter Twelve

  The way to love anything is to realise that it may be lost.

  – GK Chesterton

  Cass continued doing well, suffering no side effects from the oncothermia and showing no signs of tumour recurrence. She was as brave as ever. She was now on monthly check-ups to watch for any sign of the cancer’s return.

  I’d be sitting with her at the hospital. Her slight arms would be so covered in puncture wounds where the nurses had tried unsuccessfully to find a vein that it was painful to look at. But if Cass let out an involuntary ‘Ouch’ when another attempt failed she would immediately say to the nurse who was working on her, ‘I’m sorry for complaining.’ It didn’t matter how many times they reassured her and told her they were the ones who were sorry for having to cause her pain, she al
ways wanted to make their jobs as easy as possible.

  When she’d completed three weeks of the new treatment she was feeling so well that the whole family other than her brother, Chris, who was unable to get leave, would go away together for a fortnight in Queensland. This was a chance for them to leave behind the tension and worry and exhaustion and fear. Even if it was only for a little while, they could relax and have fun just like all those families whose children hadn’t been touched by cancer.

  One evening while Cass was away Dad called me to come into the lounge room, where he was watching TV. The show that was on had promoted an interview with Dr Charlie Teo to start after the commercial break – Dad knew he was Cass’s neurosurgeon and that I wouldn’t want to miss the show. Cass had been so grateful to Dr Teo and really admired him, so I fired off a quick text to let her know he was on TV.

  The segment started with a person who had brain cancer and who hadn’t responded to treatment, with footage of Dr Teo examining scans of the tumour. Then he was interviewed about these kinds of cancers. Dad and I watched on, thinking perhaps he was going to speak about a medical breakthrough to help these patients. But my excitement turned to disbelief and then dismay as he spoke not about a new treatment, but instead about how terrible the outcome for brain cancer patients was – specifically, the abysmally low rates of survival for someone with the disease.

  The point Dr Teo was trying to make was that it received far too small a slice of the government medical-research pie compared to other diseases. He said it got less than 5 percent of the overall funding that went into cancer research, despite it killing more people under 40 than any other form of cancer. He also said that brain cancer survival rates had hardly changed in 30 years. Those things were all true and his intention was good, but I felt really angry at the way he had gone about trying to get attention for the cause. I said to Dad, ‘How freaking rude of him to deprive his cancer patients of hope! I get that he wants people to donate money, but that’s going too far.’

  The only good thing about it all was that Cass was out enjoying the sun with her family and hadn’t got back in time to watch the show when I told her about it. She texted me later that evening to ask what her favourite doc had said. No way was I going to tell her the truth and smash her hopes of recovery. So I texted back, OH, YOU DIDN’T MISS OUT ON MUCH, HE WAS JUST FUNDRAISING FOR BRAIN CANCER RESEARCH. HE SEEMS LIKE A GREAT GUY.

  But I couldn’t get the grimness and pessimism of Teo’s message out of my head. I needed to know more, do some research and find out exactly how he had been wrong. The initial information made me feel a bit better. The website of the Cure Brain Cancer Foundation, which he had founded, told me that 20 percent of people diagnosed with brain cancer were alive five years later. That was still way too low a number, obviously, but it was a hell of a lot better than suggesting people had no chance at all! Then I searched specifically for the form of cancer Cass had, which fell within the group known as pineoblastoma.

  According to world-leading American hospital St Jude’s, which is based in Memphis and specialises in paediatric cancer and other life-threatening diseases, the five-year survival rate for young people with any form of pineoblastoma is between 60 and 65 percent. That sounded pretty encouraging BUT – and it was a huge but – when I delved further and looked at Cass’s particular tumour, pinealoblastoma, a type of glioblastoma multiforme, the results were confusing. One research paper reported a 10 percent survival rate after five years, another showed a median survival of just 30 months, while the American Brain Tumor Association put it at less than half of that. When it came to cancers that had spread into the spinal cord, like Cass’s had, the news was unbearably grim. The 4 percent chance Cass had been given on her diagnosis looked optimistic compared to some of the things I was reading.

  I thought maybe the sources I’d found through a general search might not be the best available – perhaps there were others out there with much better, more encouraging figures. My university student login details gave me access to a wide range of scientific research papers and I now turned to these, looking through everything I could find. The more I saw, the more I felt sick to my stomach. According to what I was reading, Cass was lucky to have survived this long. I slammed my laptop shut and backed away from it. It felt to me in that moment not simply a chunk of plastic, glass and metal but more like an oracle of evil.

  When I calmed down enough I went over to my wall of quotes for some inspiration. One of my favourite messages was ‘Act or accept’. The meaning was obvious: if I didn’t like things the way they were and wasn’t prepared to accept it, I had to do something to bring about change.

  When I finally did go to bed I couldn’t sleep. Lying awake that night, I convinced myself that I’d got the details of Cass’s tumour wrong. That was it: I’d just made a silly mistake. In my heart of hearts I knew I hadn’t, but it was the only thing I had left to cling to. I decided that I would call Gloria in the morning to check.

  As I dialled her number I was sending up a silent prayer that she would set me straight and I’d be able to investigate the tumour name she gave me and find much, much better news. But Gloria, gracious as always, despite the confusion she must have felt about me disturbing her on holiday with this out-of-the-blue question, confirmed I’d had it right all along. She asked why I’d wanted to know. ‘Oh, just wondering,’ I said, and ended the call as quickly as possible.

  At first I felt only despair, but gradually it occurred to me that even the most dire projections I’d read had said there was some chance. They might have put a tiny number on the chance of survival but they hadn’t made it zero. Even if you believed the very worst-case scenarios, someone was making it through. Why not Cass? When it came to fighting spirit and sunny optimism, she was world-champion material. Surely she was special enough to beat the odds and live to tell the tale. I would do whatever it took to help her. Her case wasn’t hopeless. She wasn’t giving up on life and I would stick by her every step of the way.

  A few days later I would be going to see my GP for my regular post-cancer check-up. I would be having them every three months for the first year, and this was my second. At the appointment the doctor would examine me physically, ask me questions to check for any symptoms, and give me the result of a blood test looking for tumour markers.

  The period leading up to these tests was always a very stressful one. While I could completely forget about the prospect that the cancer might recur, it fell away into the background between check-ups. But, as an appointment approached, my anxiety and hope increased by the day. The cause of the anxiety was obvious; the hope came from the fact that if I walked out of the doctor’s office with a clean bill of health I’d be that bit closer to another crucial milestone. The first big one I was working towards was one year since diagnosis. My doctors had told me that at the one-year mark the chance of my cancer coming back dropped to 10 percent. If I hit the two-year mark with no problems, the chance dropped right down to between 2 and 3 percent.

  I made a deliberate effort to use these check-up times as an opportunity for reflection. I would ask myself what I’d done in the months since the last check-up and consider whether it had been productive. I thought a lot about how I had improved in those few months and set my mind to what I could do between this check-up and the next to help other people like me. I’d experienced what it felt like to be faced with death and not be even remotely ready. If I was to walk into my doctor’s office and be told I had cancer again, I wanted to feel I’d done all I could with the time I’d been given. I hoped with every ounce of my heart that was not going to happen, but if it did I was determined to have a degree of acceptance, not live in regret about the things I should have done.

  Because it took a little while for the blood to be tested I had to go and get the sample taken five days or so before the appointment. It really only took two days for the results to be known; the extra time was just in case there was some kind of hold-up. But as the days ticked down towar
d my appointment I knew the test results would be hitting the doctor’s desk anytime. No news was good news, in the sense that if the tests showed something amiss, his office would call telling you to forget the appointment and come in urgently instead. Every time our home phone rang in the three days before the appointment my heart skipped a beat and I couldn’t breathe easy until I’d reassured myself it wasn’t the surgery staff calling.

  But at this visit it wasn’t just my own health that was on my mind. I wanted to talk to the doctor about Cass – the theoretical odds I’d researched were one thing, but I thought he would probably have had first-hand experience of enough individual survival stories and could reassure me about her ability to be the exception to the rule.

  I knew from the easy look on the doc’s face when Mum and I walked in that my tests had been just fine. We went through the rest of the process, and he was updating my file notes and getting ready to wrap up and send me on my way for another three months when I asked him, ‘What’s your knowledge of brain cancer?’

  He turned and gave me his full attention. ‘I’ve had a few brain cancer patients, and of course I studied it at university,’ he said. ‘Why do you ask?’

  ‘I met this girl when I was in treatment. Her name is Cass, and she is the most amazing person I’ve ever met. I’ll have to introduce you to her one day. Anyway, she has a brain tumour called pineoblastoma. What does that mean for her?’

  He paused for a moment, gathering his thoughts. ‘What stage?’

  ‘Four,’ I answered. It seemed as if he was trying to find the right words. ‘I’ve looked online but there’s not much information,’ I added. Not strictly true, of course. What I meant was, there wasn’t the kind of information I wanted.