Meanwhile, Mum had set herself the task of finding someone for me to talk to whose experiences were close enough to mine so that they could give me advice and support. The hospital had a whole range of information booklets about different types of cancers, put together by the Cancer Council. They included lots of factual explanations but also the stories of people who had gone through that particular disease. The booklet on testicular cancer included a piece about the experience of Chris Reason, who was identified as a TV journalist. His name rang a bell, and when we Googled him his face was instantly familiar from the Channel 7 news.
Like all those who’d opened up about what they’d been through in these brochures, the idea was to give hope to people who’d been newly diagnosed. Chris’s story was compelling. His cancer had been caught nice and early, he’d had a testicle removed and the surgery had stopped the disease from spreading – he hadn’t needed chemo or any other treatment. He did, however, require annual check-ups in September, the month of his first diagnosis, just to confirm the cancer had not recurred.
He described how he’d made sure to have these checks until 2001. That September was, of course, the month the 9/11 terrorist attacks happened. Chris was sent to America to cover the story and ended up staying there for two months, working flat out. He completely forgot about the check-up, only remembering when the following September rolled around. He went along for his medical appointment and his doctors found that not only had the cancer come back, missing his annual exam had allowed it to spread to his abdomen, with tumours around his kidneys. He’d had to have the huge RPLND surgery, which in his case had taken eight hours, and then chemotherapy.
Because he’d been fairly young when he got cancer the first time – not quite as young as me, but only in his early thirties – and because his cancer had, like mine, spread into his abdomen, Mum had decided he would be the ideal candidate for me to talk to in order to get some empathetic reassurance. We didn’t have any kind of connection with him, but Mum didn’t let that stop her. She cold-called the Channel 7 news desk and insisted to the receptionist that she needed to speak to him. The receptionist took a message and in due course Chris was kind enough to respond.
At the time I thought this was pretty nice of him, but thinking about it now I’m blown away. He’s a really high-profile guy, flying around the world to cover the biggest news stories and winning all kinds of awards, including Logies. I don’t know how many calls out of the blue like this he must get in a year, but to take time out to talk to a stranger just because their mother had asked him to makes him quite special, if you ask me.
He phoned me on my mobile. I explained my diagnosis and told him about my treatment and how hard I was finding it, especially the idea that I should have been out there right now doing the things my friends were doing – starting their careers, attending uni, building relationships. I told him that I felt it had all passed me by and I wasn’t sure if I would ever be able to catch up. He said it was hard, but I could do it and one day I would be able to look back on it all and be glad I did. Then he said something that really struck home, something I’ll never forget: ‘You need to trade in one year of your life now for another 50 in the future.’
What a great way to look at it. From then on, whenever I found myself thinking everything was too much, I tried to remember those words of wisdom.
A huge part of being ready to accept this wise perspective was because of the changes that Cass had brought to my mindset. Her positivity was contagious. I developed yet another infection around this time and had to be readmitted to hospital, but it didn’t throw me the way it had before. I didn’t enjoy it, but by not kicking so hard against my circumstances they became easier to bear. Dad was still by my side as much as possible, but Cass came in whenever she could and we sat together watching movies on my laptop for hours on end. Not only did it help pass the time for me, it gave Dad a much-needed break.
The beanie Cass had given me became a real talisman; I felt stronger for having it and wore it every single day (it got to the point where Mum got Cass to tell her where she had bought it and went there herself to get me an identical one that I could wear while the original was being washed).
I definitely still had bad days and times when the doubts would flood over me again. But Cass was rubbing off on me. Without knowing it, she lived by the Buddhist principle of acceptance that even if you can’t change what you’re experiencing you can change the way you react to it. She also instinctively knew that there’s no magic wand you can wave over someone to take away their pain or prevent bad things happening to them, but you can influence the way they feel about what’s going on. All you have to do is give them your ear and let them talk, or touch their heart with your smile, or simply be by their side and let them know they’re not alone. It only works if you have a genuine, compassionate nature, which Cass did. Thanks to her friendship and support, I was able to change my perspective and feel better prepared to handle whatever came next.
Chapter Six
Sometimes our light goes out, but is blown again into instant flame by an encounter with another human being.
– Albert Schweitzer
Social media was both a blessing and a curse when I was undergoing treatment. At its best, it connected me with people who loved me and helped me get through it all. Skype was a real boon for Mel and me while she was travelling overseas, and we talked at least once a week.
And Facebook was great for connecting me with my Uncle Angel. Angel, Dad’s brother, lives on the Gold Coast, where he is a senior social worker. His partner, Ashley, is a psychologist. Dad sought out their advice after my episode in the car and they were a great help to us. Angel did phone me, but a lot of the time we messaged back and forth via Facebook. His calm, knowledgeable support meant a lot to me.
But being on Facebook for that good stuff also meant seeing what my friends and cousins were up to – all the parties and football games and new jobs and relationship status updates. The only way to avoid it was to unfriend them, and there was no way in the world I was going to do that. It would have been like saying to myself that I was never going to rejoin normal life. But keeping those connections meant being bombarded every time I went on there with posts about the cool things people were doing, or their bitching about stuff that seemed so petty to me – like not being able to get a parking spot, or takeaway coffee not being hot enough. They have no clue, I would think. If they experienced even 1 percent of what I’m going through, then they’d have something real to complain about. Knowing that I would have been on there talking about the same trivial matters if I didn’t have cancer didn’t stop me from being bitter.
I often had days where I’d be feeling okay until I logged in Facebook and then I’d get really down or angry. Dad used to dread me going on there, and he once said he wished he was some kind of computer whiz who could make a virus to stop people updating their statuses until I was better. In fact, now that we were almost two months into this crazy ride and all the psychological strain that came with it, Dad sometimes found himself upset at the way people reacted. A lot of family and friends were good – either going the extra mile like my uncles Angel and Luis and my Auntie Aurora, or simply asking after me and making it clear they really cared about the answer. But others started to avoid my parents.
My guess is that this group of people were deeply uncomfortable with illness and didn’t want to think about cancer, let alone the possibility of dying from it. So they just dodged it, and if that meant not seeing or talking to Mum and Dad, that’s what they did. This even happened with members of the extended family and that really shocked and hurt Dad, for whom family was the top priority. All I can say is, if you’re ever in that situation, don’t think that dropping out of contact during a traumatic time will help. Just the opposite. A simple indication that you’re thinking about the person can do the world of good. Gifts are nice, but for me your time is the best, most heartfelt present of all. Making a call or sending a text message can be so meaningf
ul. Every positive thought of their own a cancer patient generates with help from those around them builds up into armour to help them get through the fight, and when you’re in that position each message of support makes you feel like you have another soldier in your army, standing beside you all the way.
To my sadness, one or two of the people to whom I’d been incredibly close had drifted out of my life while others let me know they were there for me no matter what. It really helped when people were able to treat me as they normally would and talk to me in the way they would have done before I was sick. There were few things I cherished more than the moments when I felt ordinary and normal, not like Cancer Boy. Now, if I’m talking to someone who is seriously ill I’ll ask them, ‘How’s everything?’ That lets them dictate the direction of the conversation, and they can choose whether they want to open up about their condition or not.
A wise person once told me that none of us can completely understand what someone else is going through, because each person’s experience is unique, but the good thing is we don’t have to completely understand in order to help. We can bridge the gap between us and someone else by simply reaching out, offering a listening ear, an understanding heart and a reassuring touch; the fundamental things that bind us humans together.
Having said all that, if you are friends with a person going through something like cancer and they don’t seem to be too appreciative of the efforts you’re making, don’t take it personally. Some people, like Cass, are able to maintain a sensitivity to other people no matter how bad their own situation. But for a lot of people, including me, cancer makes you so self-focused you neglect or take for granted people who are there for you big time. I was ready to have visits from friends again, and mates from uni such as Kondi would come and see me after classes, while others would come after work. If I was asleep they’d just sit there with me anyway. I often didn’t think about the effort they’d made to get there, or the fact that they’d squeezed the visit in between all their other commitments.
Some people came once and never came back. I know that I probably wasn’t very good company, but you don’t go to see someone in hospital to be entertained, do you? My real friends went the extra mile, including chipping in together to buy me a Spain jersey from the 2010 World Cup signed by the whole team! What an amazing and thoughtful gift.
Adrian, Scaz and Tomic kept in especially close touch and would try to visit me whenever I felt up to it, as would my mate Matt. We’d talk about sport and when I was back home they’d come over, and if I was having a particularly good day they’d take me out to a local pub to see if I felt well enough to eat a schnitzel. We’d cap off those outings by playing FIFA games on the PlayStation back home. It was a great release.
There were people who surprised me by stepping up in a way that made them closer friends than they had been before. Scaz was a great example of this. He was the mate I’d often gone out with on Friday night to a club or pub, where we could watch a game on the telly and have a bit of a laugh. We’d shoot the crap and talk sports, but it was very much a blokey friendship with no deep-and-meaningfuls about our feelings. But when I got sick he was there for me every step of the way.
Scaz would rather have walked over hot coals than shared a teary tell-all, but he left me in no doubt how he felt. Every single Friday from the week I started treatment he would come and visit me, either in hospital or at home, and bring me a $20 TAB multi ticket. This is a slip with a minimum of six different bets over a range of sports – rugby league, AFL, horse-racing, English Premier League football, you name it. In theory you could win a heap of money because each win parlayed into the next bet, but in practice it was really hard to collect since, to win anything, you had to correctly pick each of the six or more bets you’d put on.
The idea of winning a five- or six-figure sum was great, but the real point of it was just to give me an interest across the whole weekend. He’d often come back and watch one or more of the matches with me and it was like a holiday from cancer. We talked sport and anything else that crossed our minds, except for sickness and treatment and the possibility of dying. I had a great time with him even though in all those months we didn’t win, not even once. Poor Scaz. It must have cost him a small fortune, but if it bothered him he never let on. I can’t thank him enough for what he did for me.
Between the immediate risk of throwing up and the bigger danger of catching an infection thanks to my weakened immune system, I couldn’t go out very much even when I was well enough to be based at home rather than hospital; however Adrian, Tomic, Kondi and another friend, Correia, took me out to lunch once or twice when I felt up to it. Even if I couldn’t really eat it felt good to get out of the house, breathe in some fresh air and do something – yes, that word again – normal. But just when you were relaxing, a reminder that you were anything but would blindside you.
One of the places we went to was a pub not too far from my place. I wore my beanie everywhere I went in public because I felt so self-conscious about my bald head. On perhaps the third visit I’d made to this club over a couple of months, I was stopped at the door by the lady checking IDs, who told me I’d have to take the beanie off.
‘Oh, I’ve kept it on when I’ve been here before,’ I said.
‘Well, I’m the manager and unless you take it off you can’t come in.’
I said, ‘I have cancer and I wear it so I don’t have to show my bald head.’
Her response was, ‘Oh yeah, darling, do you think I haven’t heard that one before?’
I took the beanie off and said, ‘Still don’t believe me?’
She just looked like a stunned mullet and didn’t say anything. I kept the beanie on and since then, if ever I went back to that place, nothing was said. I don’t know what’s more disappointing – the fact that people can be so insensitive to what others might be going through, or that there are people who are so cynical they really would lie about cancer just to keep their hat on.
My blood tests were showing that the chemo was working, the tumour markers were dropping. I wasn’t sure what this meant in terms of the likelihood of the RPLND surgery, but it seemed like a good sign in general. But the better my test results, the worse I felt physically from the cumulative effects of the chemo. I’d started to think in terms of small victories, whether it was a pain- and nausea-free morning allowing me to get out of the house, or a quick cannula insertion. I would have really bad night sweats. I’d wake up to find my sheets soaked. I could change my pyjamas or change the sheets, but a couple of hours later the same thing would happen.
Another infection got me readmitted to hospital, back in the oncology ward full of old men in a four-bed room. It was a confronting place to be and I saw all kinds of things I wish I hadn’t, including a patient lose control of his bowels by simply attempting to stand up. But I also came to know a very special man named Al who had a big impact on me.
Al was in the bed next to mine and I met him the morning after I was admitted with a fever. The curtains had been drawn around my bed during the night and Dad had just pulled them back when Al came out of the shared bathroom. He was very frail, with numerous large skin ulcers visible, and he was moving slowly using a walking frame. Al was a softly spoken, old-fashioned gentleman and he introduced himself to us and generously offered me the use of his cane if I needed it to get to the bathroom, saying it was the best invention ever made.
Even though every breath sounded like a struggle he was kind and considerate to everyone, and whenever a new nurse came in he would say, ‘Take care of that boy,’ nodding to me. He and Dad talked quite a lot over the next few days. Al had late-stage cancer and knew he was dying. He had wanted to pass away at home, but he lived on a farm with his wife and she wasn’t able to care for him on her own. He had a son who was serving in the defence forces in Afghanistan, and he had been given special leave and was on his way home to see his father. Al dreamed of being able to go with his son to their favourite bakery and have one more mea
t pie, but it was obvious that wasn’t going to be possible. Even so, he never complained or gave in to despair.
Our room had a window facing the east, and Al loved to sit by it and watch the sunrise. On my second or third morning, I went and sat by him and he told me that he tried to take a photo of the sunrise every day. He said how beautiful it was to see that warm ray of sunshine come over the horizon, and the photo was a reminder not to take things for granted – he showed me some of the others he had taken. I went and got my phone and took a shot too.
‘I’m going to miss waking up to this magic every morning,’ he said. ‘You must do me a favour. No matter what you do or how busy you get, you must always wake up, take a breath and appreciate the sunrise and the light spreading warmth on the world. Can you do this for me?’
‘Of course I can,’ I agreed.
It was clear Al was going downhill fast, but he hung on to see his boy. His son arrived in time for them to spend some of Al’s last hours together; he died that night. Dad and I took the opportunity the next day to tell his son what Al had said to us about enjoying life, and we shed a tear with him. I still look at that picture I took with Al, and I’m inspired to stop and appreciate life every day.
I was well enough to go back home with the intention of doing the rest of the third chemo cycle as an outpatient. One day I’d finished my session and Dad and I were leaving the clinic just as his friend, Felice, came in with his wife, Rosa, who was there for her chemo. We asked how she was going. It turned out she had just reached the stage of treatment when your veins collapse and getting the needle in becomes a major trial. She was almost in tears as she spoke about it, saying how hard it was not to feel dejected.
Being in the trenches together creates a very special bond. I would never have done this in a social setting, but I stepped forward and gave her a big hug. ‘We might have bad days, but at least we’re here,’ I said. Just as I had done when people who knew what it was like gave me encouragement, she straightened up and smiled, finding the strength needed to get through the next few hours. Sympathy is all well and good, but there’s nothing like empathy. This was my first touch of what it meant and felt like to be part of the cancer community.
By Your Side Page 10