My future was so uncertain I couldn’t see beyond the end of my chemo treatment; sometimes I felt like I couldn’t even see beyond the end of the day. My mind couldn’t push my body because my mind had no faith that things would be okay. Every part of me wanted to give up because I felt so helplessly swept along by events I could not control. I wanted to do the equivalent of stopping the game, but this was life, not a game, and there was no ref’s whistle. My anxiety surged out of control.
One day I used the iPad my parents had brought in for me to look up the drugs I was being given. I read that one of the well-documented possible side effects of bleomycin was damage to the lungs. Typically, this shows up gradually in the first six months after treatment starts. It affects only a minority of patients, with the elderly and people on oxygen therapy most at risk, but it can be severe enough to be fatal. I asked one of the doctors about it, saying, ‘No-one ever explained to me the impact these drugs could have on my lung capacity. I told you all I want to do is be well enough to play soccer again.’
He acknowledged it was possible the lungs might be scarred in a way that made intense exercise over long periods very difficult – in other words, if I survived I might come out of this never being able to play again – but emphasised the chances of it happening were reasonably low overall and I wasn’t in the groups most likely to be at risk. I didn’t really hear the last part, I just latched onto it as another reason to be pessimistic.
It didn’t take much for me to get angry or emotional, and this was enough to really set me off. It hit me as yet another thing being taken away from me. My sense of independence, my freedom, my own quality of life and now my first love – playing football. The game had given me some of the best times ever, the closest friendships and an extra-special bond with my father. I couldn’t even picture my life without it, but I might have to.
I didn’t even feel sad, I just felt furious. I’d reached boiling point. I couldn’t handle it anymore. I was on an IV fluid drip. I waited until Dad went to the toilet, then pushed the button that stopped the flow of fluid, unclipped the cord that connected the IV to my cannula and ran. Dad came back to find me missing and looked around for me, calmly at first but getting worried when the nurses said they’d seen me heading down in the elevator but hadn’t thought anything of it.
Getting out on the ground floor, I followed the twists and turns of the corridor aiming for the exit. I didn’t have a plan I just wanted to get away, but then I saw the entrance to the hospital’s little chapel. I ducked in and found it empty. I knelt down and started crying.
Growing up in a Catholic family and going to a Catholic school, I’d been encouraged to be devout and had felt engaged with my faith. As a child saying my prayers before bed, I felt like I was sending a message to God when I detailed what I was grateful for and my aspirations.
When Mitchel died, I relied heavily on that faith for me to be able to accept what had happened. Our school priest, Father Honorio, conducted the funeral and gave me a lot of time in the aftermath. He became a counsellor to whom I could open up and share my worries and fears. He helped me reach the point where I felt that rather than fret about what had happened and could not be changed I should, instead, celebrate and honour Mitchel’s life. Unfortunately I lost touch with Father Honorio when he left the priesthood shortly before I’d been diagnosed, so I hadn’t been able to seek out his advice and comfort. Now, on my knees in the chapel, I wanted answers.
‘I can’t go any further, I can’t take anymore. What have I done to deserve this?’ I asked God silently. ‘Why me? Why, why, why? I’ve already done my suffering – please make this go away.’
All the while, Dad had been searching for me, getting more and more concerned. Meanwhile, Mum had finished cooking for me at home and come in to visit me. She’d gone up to the ward to find Dad sitting by my empty bed, very worried and dejected. He explained that I’d run away and he’d looked all over for me without success and had come back to the ward in the hope I would return. Mum soothed him and told him to stay there.
Mum, like Dad, was extremely worried. As she was going down the elevator to look for me, she prayed, ‘Please, God, help me find my son.’ She later told me that she walked all around the hospital repeating this line over and over in her head when she heard crying inside one of the rooms on the ground floor. Whoever was sobbing sounded very familiar, and when she entered the room she realised it was a chapel and saw me sitting at the front, in tears.
My mother, who is an extremely emotional person and always has been, was an amazing tower of strength in that moment. She stayed completely calm as I fell into her arms crying, ‘Mum, I don’t want to do this. They’re going to take everything away from me, make them stop’.
‘Jason,’ she said, ‘we will get through this together. You don’t deserve this, nobody does, but I believe everything happens for a reason, and one day you’ll find the answer you are searching for now.’
Her loving presence helped me pull myself back together, but by the time we returned to the ward I was angry again. When Dad expressed his relief that I was safe, I lashed out at him. He remained as patient and kind as ever. I could see how much my parents loved me, but I felt that no-one could make me feel better because no-one could truly understand what I was going through.
On May 2, after I’d completed five days of my first 21-day chemo cycle, I was released from hospital on what happened to be the day before my 19th birthday. A year earlier, we’d had a celebration with about 50 of my friends in our backyard. My mate Seb had DJ’d and Dad had made fantastic pizzas for everyone in our wood-fired oven. After midnight, those of us who were of legal drinking age, including me now, had headed out to a club to continue the party. It had been a great night. My birthday this year would be very different.
The doctors had told me that because the chemo would have weakened my immune system I needed to avoid crowds and public places. I was also supposed to just rest and take things very easy, giving my body time to recover. But Dad, wanting to cheer me up, decided it would be a good idea to throw a surprise party for me with family and friends. It might seem strange that he would ignore the medical advice like this, but I think he figured that by keeping it fairly small and intimate the health risks would be minimised and the pleasure I’d get from seeing my friends would give me a much-needed boost. I knew nothing of this.
It was great to be back in my own bed and I took full advantage of it by getting up as late as possible. While I was sleeping in, Dad was busy making pizzas ready to be popped into the oven that evening. When I finally emerged and asked what the story was with all the food, he wouldn’t answer, not wanting to ruin the surprise. Mum finally told me about the planned get-together. Anger flooded over me. The last thing I wanted was to have to talk to people again and again about what I was going through when I hadn’t even got my own head around it. I told him furiously he should have warned me and yelled, ‘I don’t want to fucking see anyone, no-one can help me!’ I was getting really worked up now.
As Dad and Mel looked on in shock at my outburst Mum said, ‘But Kirsty and Cassie are already on their way, they just wanted to drop a present in for you.’
Kirsty and Mel were Facebook friends before I’d become sick, and after my diagnosis they’d exchanged phone numbers so Mel could keep Kirsty updated. She’d invited both of them along to the gathering that night, but Cass couldn’t make it so had asked if she could come along during the day to hand me a gift. Because Cass hadn’t actually seen me since my diagnosis Kirsty would come along too, as an ice-breaker. Mel had said that all sounded fine.
But hearing about this, I shouted, ‘What are you talking about? No, no, no, I don’t want to see them! I told you I didn’t want to see anyone. I just want to be left alone!’ In an attempt to calm the situation down, Mel said she would try to reach them and ask them not to come, but it was too late: as Kirsty answered her call they were already pulling up at the front.
Mel went over to the gi
rls as they were getting out of the car carrying their presents and explained to them that I wasn’t quite up to having visitors, after all. I stood by the door to check on what was happening and they glanced up and saw me. All I could think about was how terrible I must look. The weight was continuing to fall off me, I hadn’t shaved since I’d been admitted to hospital and had some half-formed fungus-like beard, and my arms were swollen and bruised from the injections. I just couldn’t believe my family had been prepared to let them see me in this state.
‘LEAVE ME ALONE!!!’ I screamed at the top of my lungs and slammed the door as hard as I could.
I made such a racket that some of our neighbours rushed out thinking someone needed help, only to find two stunned and confused girls and an upset Mel trying to apologise to them. At the time, Cass was very understanding. She and Kirsty assured Mel that it was fine, they hadn’t taken offence. But later on, when we’d become close, she delighted in teasing me about my tantrum that day, saying, ‘You screamed like a girl’ as she laughed at the memory of it.
I went to my room and sat on my bed, crying and feeling sorry for myself. What a shit birthday. I don’t want this to be real. I want to be normal like everyone else. Round and round it went.
I felt so alienated from everyone: beyond all help. I was different now. I had cancer and I was alone in my sad world. I logged on to Facebook, expecting it to confirm the feelings I was wallowing in, but I was jolted to see that after the little show I’d put on for her earlier, Cass hadn’t gone home and ‘unfriended’ me. Instead, she’d written me a really, really lovely message: HAPPY BIRTHDAY TO THE MOST AMAZING JASON CARRASCO. I HOPE YOU HAVE A WONDERFUL BIRTHDAY AND MANY MORE TO COME.
Wow, that was weird. No-one other than my family had ever called me amazing before. Cass didn’t even know me, not really, so how did she think I was amazing? Especially because on the two occasions she’d made contact with me most recently, I was pretty sure I’d been the opposite. I couldn’t figure out how to reply, so once again I made no response.
My parents and Mel got in touch with everyone and let them know the party was off. After staying in my room most of the day I dragged myself downstairs to eat, but the gloom over the house didn’t lift. When I went to bed that night my mind returned to Cass and what she had written. I felt so confused. I thought, Why is she being so nice to me? What does she want? I have nothing to give.
My bleak state of mind persisted the next morning, not helped by the fact that when I took a good look at myself in the mirror my arms seemed as skinny and weak as they had when I was in Year 7. When a text message appeared on my phone from Cass asking me how I was feeling (boy, was that girl persistent!), I just ignored it.
The following morning I went downstairs to be with my family for a while but I really wasn’t feeling great, physically. I came back to my room but I could not get comfortable. The autumn sun was beaming through my window, but I was so cold I was shivering. It was the first sign of fever from an infection I’d developed. Dad took me back to hospital that afternoon. We went to the emergency department and I was admitted straight away, thanks to my little purple book. When you’re undergoing chemo and they let you go home, they send one of these books with you, detailing your condition and treatment. Because your immune system is so shot, spending hours hanging around a crowded waiting room with a bunch of sick people is a very bad idea, so the purple chemo book is like a VIP passport: it puts you in the express queue. It’s not exactly complimentary tickets to the World Cup final, but it is the one perk that comes with cancer.
I had CT scans to check on the tumour and blood tests to identify the infection so that I could get the right IV antibiotic treatment. The aim was to get me well enough for the next chemo session, which was scheduled to take place in two days’ time, although I would now remain in hospital for the rest of the cycle just to be safe. I was back in the ward with the old men and Dad was once again by my side every minute he could be. I was also back on the routine of daily blood tests.
The doctors were checking my cancer markers and gave me some great news: my marker-count was dropping. The chemo was working.
That gave me motivation to bear up to the second half of the chemo cycle, even though the nausea was now accompanied by constipation (let’s just say that before this I had no idea what an enema was, and I wish that was still the case! Unfortunately, when you’re having chemo, constipation is more than just a discomfort or an inconvenience; the doctors won’t let you go home until everything’s working again). I’d also started losing my hair – it came away in Dad’s hand when he rubbed my head one night. Although I’d known it would happen, it was another blow to my self-esteem. Dad agreed to help me get rid of the remaining clumps by shaving my head when I was back home again.
I asked my parents to politely discourage people from visiting. I’d worn out my ability to tell my story repeatedly, and I found even normal conversation tiring. But that meant the extended family and friends called Dad a lot for updates. It felt like his phone was going off every two minutes when he was sitting with me, and it started to get on my nerves. I usually didn’t mind people calling, but there were times I wanted space to myself so I could digest everything that was going on. What I didn’t realise was that talking with people, whether it was about what has happening with me or just about normal everyday things, really relieved the tension for him. Mum was showing the strain too. When she came in to visit, she looked worn out.
A couple of my closest mates did continue to visit during this period with my blessing, and it was great to see them. Tomic and Adrian used to come a couple of times a week after work. They’d ask how I was feeling then they’d try to get me to laugh, reminding me of some of the adventures we’d had together and telling me funny incidents from their everyday lives. Our teammate Scaz was another stalwart. Other friends from the team would sometimes visit too and give me detailed accounts of the match they’d played the past weekend. Despite the frustration of missing games myself, I loved to hear these stories and could picture it all so clearly it made me feel like I was still a part of things. There were also friends from uni who would come after lectures if I said yes when they’d texted to see if I was up to it.
Two days after I was released I was back again, but this time as an outpatient – my first experience of having chemo in the hospital’s stand-alone cancer centre, rather than on a ward. The centre had a nurses’ station, accessible toilets but no beds. Instead, there were 14 large padded recliner chairs in two facing lines with a big aisle in between. There were stackable chairs next to some of them with spares elsewhere around the room, low tables for magazines and a wall-mounted TV.
Most of the recliners were occupied by people already receiving treatment. They covered a wide range, from quite healthy-looking at the start of treatment to very frail, but the only ones I really registered were those who were bald and pale and looked very, very ill. On the ward, I generally kept the curtains around my bed drawn and tried to block out as much of the reality around me as possible. Here, there was no getting away from it. It was like a horrible fore shadowing of the condition I was sure I would be in all too soon.
I got more and more tense. I was sweating and my heart was racing. When I’d begun chemo it had been quite easy to find a vein, but the treatment shrunk them and made it really difficult to get the needle in so that a cannula could be inserted. The fact that I was trembling with barely repressed panic made it harder. I felt like everyone was staring at me and that increased my anxiety. The nurse who was trying to get the needle in for me was urging me to relax, but I was already on the verge of a panic attack.
I got so agitated that two or three other nurses came over to join their colleague. They tried to calm me down, but every failed attempt hurt so much and I started groaning in both physical pain and mental anguish. At one point the needle missed the vein and went into the tissue instead, so that the fluid they attempted to inject to flush the area was agonising. By now I was groanin
g so loudly that they brought over screens to put around me in a fairly futile attempt to try to spare the other patients.
Finally the needle was in and the chemo drip could start. When I’d calmed down enough the nurses removed the screens. After a while another patient, who looked to be around my age, said encouragingly, ‘It gets better.’ I replied, ‘Well, it can’t get any worse.’ We chatted for a short while – he was almost at the end of his treatment for the day. It turned out he too had testicular cancer and was a couple of months ahead of me, with his last chemo treatment within sight. At last his final bag was empty and he was leaving. We quickly exchanged details so we could connect on Facebook and I wished he’d been able to stay longer. I found it so comforting to have met him even briefly – he was someone I could relate to, someone who really knew what it was like.
Really, I should have felt happy at the end of that day: the next five days were rest days and then it would be Day 21, marking the end of my first chemo cycle. Instead, I was relentlessly negative. Mel said to me, ‘You’ve done really well. Only three more cycles to go and you’ll be done!’ My response was, ‘It’s not like I’ll be here by the second cycle, so don’t worry about it.’ How did they all put up with me?
By Your Side Page 7