Dad says that was the moment it truly struck home that he could be about to say his final farewell to his son.
As they said goodbye to me before I was wheeled through the doors, Dad and Mel were crying but Mum had taken on the role of the strong one, telling me everything would be all right and they would see me soon. I learned later that her strength had come from a conversation she’d had the night before with a doctor after she’d been sobbing in the corridor. The doctor, who knew about my surgery, said to Mum, ‘You can’t go in there tomorrow like this. You want your son to heal, don’t you? If you cry like this when you say goodbye to him, he will take that weakness into his operation. You have to be strong for him.’
The pep talk worked on Mum and her amazing calmness worked on me. I felt strong and determined and ready to face my fate.
Finally we were at the door where the family had to leave. One by one, I hugged them and we said our ‘love you’s’. Mum said once more, ‘The doctors will take care of you and they will bring you back to me.’ Her hand was in mine until the last possible second, then I was through the door. Apparently the instant I was out of sight all the emotion she’d been holding back came over her in a huge wave and she collapsed to the floor sobbing.
The theatre nurses said I could keep my wristband on as long as they taped it up. I felt like Mitchel was looking down on me, protecting me. I also thought about Cass and the grace with which she’d endured her huge surgeries. I pictured both of their faces then the anaesthetic began its work as I started to count backwards from 10 and I was out like a light.
In the family waiting area the minutes dragged by for Mum, Dad, Mel, Angel and Ashley. Finally, after six-and-a-half hours, Dad’s phone rang with a call from Dr Vicaretti. They had removed a 15 cm tumour weighing 2 kg. Unfortunately, they had not been able to save one of my kidneys and it, too, had been taken out. But I’d remained stable throughout the surgery, they were finishing stitching me up and Dad should be able to see me soon. Dad passed on the message to the assembled family and then rang his brother Manuel, who would pass the news to all the others who were anxiously waiting to hear. It wasn’t too long until the recovery ward nurse called and said I was waking up and had asked for Dad. The nurse reckons he set an Olympic record time getting there.
I was still hooked up to all sorts of monitors and tubes, and absolutely whacked on medication. My small bag of possessions had gone with me and the nurses told me later I’d asked to see my phone, and they’d got it for me but I was so out of it I couldn’t even read the screen. When I caught sight of Dad I yelled out, ‘I love you,’ in a voice he said he hadn’t heard since I was 10. I was babbling away happily and I asked for my mum, but really no visitors were supposed to come into Recovery – it was only because I was a teenager that they’d let Dad in. So with their permission he phoned Mum and held the phone up for me to speak. From who knows where in my memory came, ‘Hello, gorgeous!’ in the same silly voice I used to say to her when I was a tiny kid. Mum burst into tears, but they were happy ones this time. She replied in surprise, ‘You haven’t said that to me in years!’
Dad quickly wrapped up the call and got a sobering reminder of why visitors were not usually permitted in this area. The man in a cubicle on the other side of the room started groaning and crying. There was a dented and scraped motorbike helmet on the floor, too large to fit in the bedside cabinet where personal effects were kept. It wasn’t hard to figure out what had happened. He had been in a road accident and hadn’t known anything more until he came to after surgery and looked down at where his leg had been that morning and found it missing.
I was moved to the intensive care ward, where I would stay for two days until I was well enough to go to a private room in a regular ward. I could only stay awake for about an hour at a time but that was perfectly normal according to Dr Vicaretti. He came by to check on me and told Dad that the operating theatre had become so packed with other doctors who wanted to witness this kind of surgery, they’d had to turn people away. He said he’d been proud to be part of such an excellent surgical team.
Dad stayed till 11.30 pm that night, went back to the lodge where Mum and Mel were, and was back just after 5 am the next morning, having persuaded the nurse to let him in by promising not to make any noise but to sit quietly by my bed so he could be there when I woke. But when he came in he found me awake. I was propped up at an angle of about 60 degrees to help the wound drain and try to keep me comfortable, but when I fell asleep my head lolled back in such a way that my tongue blocked my airway. That would set my breathing monitor off and the nurse would rush in to wake me up. That had been happening all night. But other than that, I was doing okay.
It was still very early when Doctors Patel and Vicaretti arrived to check on me. They expressed surprise at seeing Dad there and he told them he wouldn’t be anywhere else in the world when I needed him. They said again how well things had gone and told me they wanted me up and walking as soon as possible. Dad and I thanked them over and over. There was nothing of the hotshot surgeon about either of them. Even though they were both incredibly skilled, they were very humble and genuinely caring. They have my eternal gratitude.
Only two visitors could come in at any time so as not to tire me out. I saw Mum and Mel that morning, and along with Dad, Ashley and Uncle Angel they worked out a roster system so I’d have someone with me as many hours of the day and night as possible. I was keen to get up and about as the doctors had urged me to, but I had to wait until one of the hospital physiotherapists had come by and shown me how to get out of bed safely. That might sound a bit ridiculous, but with a 30 cm wound in my abdomen and so much internal surgery we couldn’t take any chances.
Dad had let Cass know that I was okay straight after the operation, and once I could string a sentence together I called her myself. It was great to talk to Cass. Gloria was beside her and broke into tears once Cass nodded to her that I was okay. Cass said, ‘Mum’s crying because she’s so happy you made it. We knew you would!’ I think the deep bond Gloria and I went on to form really began that day.
Later that morning I got up for my first walk. Whatever I thought I’d been through so far, from my first operation to remove the testicle through to chemo, it was nothing compared to this. I was on heavy-duty morphine, but even so my teeth were clenched so hard I felt like they might crack. The goal was to walk 10 metres and back. My abdominal muscles had been bisected, meaning I had absolutely no core strength. I was hunched over, leaning on the IV pole for all I was worth. It seemed to take forever. Dad insisted on staying within arm’s reach of me, just in case, but I was adamant about doing it on my own. That tiny distance, which I would have covered in a second or two normally, wiped me out. I got back to bed and fell straight to sleep. But an hour later I woke up determined to do it again.
That became the pattern for the rest of the day and in all I did it five times, getting up to 20 metres and back. I knew that, as hard as it was, the more effort I made early on the quicker and better my recovery would be.
Two days after the operation it was time for Mum and Mel to go home, although they would come back for a visit in a couple of days. Dad remained with me daily from 6 am to 11 pm, only leaving then because the nursing staff politely prompted him to. While I was sleeping he would go online looking up world football news so that when I woke up he had interesting things to tell me.
Dad also encouraged me every hard-fought step of the way whenever it came time to walk. A rectangular corridor ran through the ward I was in. He stepped it out and estimated it was 90 metres long. My initial aim was to do a lap, three to four times daily. He waited patiently, rubbing my back and encouraging me when I had to rest against a wall saying to myself, ‘You can do this, you can do it.’ With his support I managed to get through six laps on the first day and built up from there.
Every day the doctor doing rounds would check the wound. The first few times I just turned away, I really did not want to know. But eventually I was in g
ood enough shape to have a shower and I finally took a proper look at the wound. It was very confronting, angry-looking and grotesque, held together by 35 staples all the way from my breastbone right past my belly button and covered by thick tape. It looked like I’d been gutted by a mad scientist who’d stuck me back together Frankenstein-style. It was so bad it made me feel faint. I had to sit down on the shower chair and try to catch my breath. I thought about how it must have been for Cass to have looked in the mirror and seen her head after surgery and how brave she’d had to be.
The next time a doctor checked on the wound I asked him what the process was for removing the staples – was it done under local anaesthetic? He gave a surprised laugh and said, ‘Ah, no, we just pull them out one by one, no local. Don’t worry, we do it all the time, you’ll be fine.’ Good thing the morphine is still plentiful! I thought.
Cass had been sending me text messages every day asking when she could come and see me, and checking in with my parents. Finally Dad decided I was strong enough for visitors. She asked him to let her surprise me. As usual, Cass had put thought into how she could cheer me up. When she first arrived at the door of my room she said, ‘I’ve got a present for you. Wait for it …’ Then she pulled out a tray of the dreaded hospital potato soup. ‘Oh yummy, I know you’re going to love it!’ she said. Delighted by the look on my face, she confessed she was joking. ‘This is what I really got you.’ She pulled out her selection of wigs. Cass proceeded to try them on me and take photos of how ridiculous I looked. I couldn’t help but laugh, even though it hurt to.
I didn’t mind that she could see I still had a catheter in. I hated having it there and it was so painful when the doctors had to adjust it or reinsert it. But even so I could joke about it with Cass because she knew from experience what it was like to have one. We were equally amused by the fact that when you had one in you’d be talking to someone and not even realise you were peeing right in front of them at the same time. When it happened to me she said, ‘Get a room, mate!’ I looked down, saw what was happening, and we both cracked up.
When the nurse came in to check on me and reminded me it was time to get up and move about, Cass took charge: ‘I’ll take him for his walk today!’ She held one hand and I used the other to support myself on the IV pole. I’d been making great progress walking with Dad, reaching the point where I could do four laps of the corridor circuit 10 times a day. But I was desperate to impress Cass and it just didn’t feel like four steady laps would cut it. I began walking faster and faster. She started out saying, ‘Wow, look how well you’re doing!’ I quickened my pace until she was having trouble keeping up. ‘Are you sure you can do this?’ she asked doubtfully.
‘Yeah, yeah, I’m fine, I do it all the time,’ I said. Before she’d even left I was paying the price of all that showing off, though I acted like nothing was wrong. In the long-term, pushing myself probably did wonders for my recovery, but short-term it was not fun.
Just before Cass had gone for the day she wanted a photo of us together. ‘Give me your hand, silly head,’ she said.
We couldn’t have guessed that shot of the two of us, me looking crook in my hospital gown lying there hooked up to tubes and monitors and Cass leaning over, head to head with me, holding my hand, would become one of a matched pair of photos that symbolised everything we went through together.
Lots of other people made the three-hour round trip from Wollongong too, and it was so good to see them. Tomic, Kirsty, Adrian, Scaz, Kondi, Correia, Matt and some of my cousins and uncles came. They really wanted to let me know they were there for me no matter what. Kondi, for instance, made the trip, only to catch me on a bad day when I couldn’t stay awake. He hung around in the waiting room for hours, but in the end I just wasn’t well enough to see anyone. He said to Dad, ‘Not to worry, tell Jason I’ll come back in a few days’ time when he’s feeling better.’ And to his credit, he did.
By the seventh day post-surgery, I was definitely improving but it was a long road. We humans are good at forgetting pain – we know that we experienced it, but we can’t remember what it really felt like. I have a reminder in the form of a video I shot on my camera as a kind of diary. In it, I’m talking to my future self, saying, ‘In a lot of pain right now but I just wanted to say, look at this one day and remember this pain. Remember all the pain you suffered through chemo and all those nights in your bedroom. Use this as motivation for one day in life – you can do what you want to do. You can do it, mate.’ I talk a bit about how much trouble I had sleeping and the various dressing changes and injections I’d been having, then I say to myself, ‘Just remember this: one day things will be different, for good.’
It’s hard to watch that video now and see myself doing it so tough, but if I ever need to remind myself of what I can get through, those couple of minutes of footage are pretty good.
In due course most of the staples came out (not an experience I can recommend!), although the area around my belly button took longer to heal. I was still on a liquid diet until everything in my abdomen got back to normal and I’d lost a fair bit of weight on it. Dr Patel and his residents visited and made the welcome ruling that I could start on solid foods again, a little at a time. Dad called Mum to tell her and before she even got off the phone she was planning what treats she could make to bring me.
After 12 days in hospital I was finally judged well enough to go home and continue my recuperation there. It was great to be back, although I had to have a couple of hours’ sleep just to get over the car ride. That night for dinner, Mel’s boyfriend, Adam, came over and Mum made a celebratory paella. We had a laugh and everyone felt more relaxed than they had in months.
Chapter Nine
You can tell the size of a person’s character by the size of things they allow to upset them.
As I continued my recuperation at home I had time to reflect on the change that had come over me in the immediate lead-up to the surgery. Where had that courage and calmness come from? Even though it had flowed all through me it didn’t feel like it had started from inside. I’d begun a diary back in 2010 when I was struggling with my feelings about myself and the world as a result of Bell’s palsy. My entries were sparse and very sporadic, but now I was moved to pick up my pen again. I wrote about what I’d experienced:
It got me thinking, what is the solution to fear? I always thought it was to be fearless, but I think in many ways that could be a flawed assumption. How will I be able to understand my circumstance if I continually deny it? How will I be able to grow, to learn and better myself as a man?
I still can’t believe the transformation. Where on earth did I get all that strength from? I’m convinced it wasn’t me who went in for that operation in a state of serenity. I didn’t even know I could be that courageous. Where has this been all my life! Only by embracing the struggle that I had built up in my imagination was I able to fully feel ready for whatever was going to happen. But I couldn’t find this on my own.
What makes life so special is the people you meet who help you to see the best in yourself. All someone needs to do is remind you that it’s been there all along. It was the nurturing of this special girl Cass that made me see how truly beautiful life can be. It felt like some kind of awakening of my soul or something weird like that. I can’t get over it and I’m still seeking to properly understand it.
I owe this girl everything. She’s the reason I got through that operation. She’s why I am still here. She saved me. She gave me life when I didn’t think there was any in me.
Writing in a diary was one of the few things I could do in that period that didn’t completely exhaust me. With no core strength, it was impossible to stand upright and it was a major challenge just to get myself out of bed. I used a rolling technique, which made me look like a seal in a nature documentary. At least it worked.
I continued to walk around the house to build up my strength, and hanging onto walls and furniture, trying to take some of the pressure off my abdomen. Then
I’d go back to bed. They say sleep is the great healer. My body didn’t need telling twice, I could hardly keep my eyes open.
Each morning a nurse would come to change the dressings on the wound and take blood so it could be tested for cancer markers. That would go on for three weeks and I was required to stick to a brutally strict diet for a total of four weeks, eating less than 2 grams of fat a day because fatty fluids were more of a risk to leak from the parts of the digestive tract that had been affected by the operation. It’s surprising how much fat there is in pretty much every kind of food, once you start to examine it. I ate only fruit, salad and so many bowls of plain rice I felt like the stuff was coming out my ears.
Cass was keen to see me as soon as I was home, but I really needed some time to adjust to the new routine. Even getting out of bed and down into the lounge room ready for the nurse’s visit wiped me out. I was also self-conscious about the way I looked: skinnier than I’d ever been, hunched and with a scruffy beard. I didn’t want Cass to see me that way, so I asked her to hold off for a bit and just communicate via texts.
On September 7, two days after I got home, Dr Patel called. It was fantastic news: the biopsy tests were back, and while he had told me in hospital that he was 90 percent sure pathology would show the cancer was gone, he could now confirm it. I’ll never forget the incredible relief and excitement of hearing him say, ‘No cancerous cells were found in the tumour, Jason. You’re clear.’
WOOHOO!
There was a big caution, though: I wasn’t cured, I was in remission and I would need to continue to be closely monitored over the next three months. At that point I would go back to Westmead to see Dr Patel and he would give me the verdict on how my body had responded to the treatment as a whole. Despite this, nothing could take away my happiness at the news that the treatment seemed to have delivered the best possible result. It felt like a real triumph. As soon as I got off that call I rang Cass. She was absolutely stoked for me: ‘I knew you could do it! I’m so proud of you!’
By Your Side Page 14