By Your Side

by Jason Carrasco

  My friends had spread the word about what was happening to me, and my partition quickly filled up with balloons, flowers, cards and food. As an inpatient, I had the chemo in my hospital bed, which meant that I could have visitors while it was happening. That was a good thing because I found being in the oncology ward very upsetting, and familiar faces were a welcome distraction. Close friends from school and my soccer team as well as family members were keen to visit. I was touched by their love and concern, although it was tiring when everyone wanted to come in and see me and pass on their best wishes in person. My parents tried to make it manageable, ushering people in and out and keeping it all flowing.

  At the end of that first chemo day, I felt exhausted but not sick. To my huge relief my back pain had disappeared, whether from the surgery or the initial chemo dose, I don’t know. There’d been so many visitors that I hadn’t actually had a break to eat lunch, and now I had my appetite back. I still had visitors with me when the dinner trays came around. The smell of the hospital potato soup made me gag, so Dad offered to pop across the road and get me a Subway sandwich instead. I was so hungry I ate the whole thing. But 10 minutes later I vomited it back up again in front of everyone, much to my embarrassment. From that day on until I finished my chemo treatment I kept a sick bag next to me whenever I ate. Even though you are given anti-nausea drugs as part of the treatment, your body is so hard hit that there were days when it seemed impossible to keep even the tiniest morsels down; there were whole weeks when it felt like if I wasn’t actually vomiting I was thinking about how long I had until it happened again.

  When visiting hours ended there was no way to ignore my surroundings. I was by far the youngest person on the ward, most of the others looked to be about 70 or 80. With only a thin curtain to separate me from the elderly men with whom I shared a room (and a single bathroom), there was no way to avoid hearing their scary rattling coughs and moans of pain. It made what I was going through seem even harder to deal with. A lot of the other patients on the ward were very far gone. The only way they would be leaving their beds was to be wheeled away under a white sheet. People came here to die and I might be one of them. It was terrifying.

  I’d never felt so alone. I’d always been that kid who never stopped talking and did anything for a laugh, but there was nothing to joke about here. Being in that atmosphere made everything much scarier. There was no-one to confide in, no-one to relate to. The memories of that time stayed so clear for me that when I recovered I made it my mission to ensure other young people with cancer wouldn’t have the same experience. But I’m getting ahead of myself. On that awful night I didn’t know if I would be getting better, or if I was already living out my last days.

  I tried to close my eyes and think about something positive, but there was a sound I couldn’t block out, a loud sucking, almost as if someone was trying to get the last bit of a milk-shake up a straw. All the visitors had left the ward now and things were quietening down, which made this terrible noise seem even louder.

  It was coming from the man in the bed opposite mine. He had some kind of opening in his neck connected to the suction machine, like out of a horror movie. I felt myself starting to panic. As crazy as it was, I became flooded with anxiety that what had happened to him would happen to me.

  I pressed the call button over and over and when no-one responded I called out, ‘Excuse me? Excuse me?’ in increasing agitation. A nurse came and worked to calm me down. She explained that the other patient had throat cancer – a completely different disease to mine – and the machine was clearing away his phlegm. I felt sick again. I understood what she was saying and I knew my thoughts were irrational but I couldn’t shake off my fear.

  She drew the curtains right around my bed and urged me to get some sleep, but I couldn’t stop my mind from racing. I finally drifted off sometime after sunrise, only to be shaken awake at 6 am. Thinking I was at home I said, ‘Dad, leave me alone, I’m too tired to get up,’ but it was someone who had come to take a blood sample. I said, groggily, ‘There must be some mix-up, I had a blood test yesterday.’ She checked her records and broke it to me that I’d be having a blood test every day for the next three weeks – the entire chemo cycle.

  By that point I’d come to hate needles. I had had so many those first few days in hospital my arms were bruised I couldn’t even move them. I’d get worked up even at the mere thought of needles, which, of course, made it harder for the poor nurses to keep me still whenever it came to my blood tests. I used to grit my teeth and try to get through that daily 6 am jabbing without making a fuss, but it always hurt and often the only decent sleep was in the hour or two before that, and I never could drift off again afterwards. Dad tried his best to make the nights easier for me, by getting special permission to stay past visiting times, spending hour after hour sitting by me, talking or rubbing my head to try to help me get to sleep.

  The stream of visitors kept up in the days that followed. I found they fell into various categories. Some people become very emotional, bursting into tears at the sight of me. I know they were overwhelmed because they cared about me, but I found it awkward to deal with as well as depressing – it kept bringing my thoughts back to the serious chance that the cancer could kill me. Others, some of my friends, really couldn’t think of anything to say besides, ‘That’s fucked up, man.’ Some tried to help by recounting stories about other people they had known who’d had cancer and survived, but they didn’t motivate or encourage me because, for one thing, it was too soon after my diagnosis and I couldn’t think that far ahead, and for another, none of them were about people I could relate to, people my age.

  Then there were the ones who would blurt out things like, ‘I don’t know what I would I do if I had one of my testicles cut out’, or ‘I couldn’t handle this, I don’t like being in hospitals’, or ‘Three and a half months of chemo, that’s such a long time.’ For some reason the negative or thoughtless things seemed to have a much bigger impact than the caring, positive ones. There were hundreds, maybe thousands, of good and helpful advice people said to me that made me feel better, but then along would come one bad line and it seemed to smash all the others out of existence.

  But the flurry of visitors soon became overwhelming. Not only was it an effort to chat to people when I felt so physically knocked about, it was emotionally draining having to talk about my disease and the treatment plan and my prognosis over and over when I still couldn’t even believe it myself.

  I also came to absolutely hate the way most people used the word ‘inspirational’. Many people who felt too uncomfortable to come in and see me in person messaged me via Facebook to send me their well-wishes. Some of them started describing me as ‘inspirational’. Why, because I developed a disease? Cancer doesn’t make you inspirational, your reaction to it does, and I felt that no-one who could see how I was reacting to this could use that word for me. I was angry and scared, what’s inspirational about that? What I came to realise was that it wasn’t about me at all. Either it was some kind of kneejerk thing, like adding the word ‘merry’ to the word ‘Christmas’ (see ‘cancer patient’ and automatically add ‘inspirational’), or else it somehow made them feel better to say that, regardless of how it affected me.

  My one wish was for everything to go back to the way it was before. I didn’t want to be treated any differently. Cancer was now defining me, but cancer was just an illness I had, it wasn’t me. My character and spirit and sense of humour, that’s what defined me, not some stupid mutant cells. I didn’t want to be ‘Cancer Boy’, but that’s what I’d become in the eyes of almost everyone. It became really hard to be around people. I wanted to be the Jason they’d have been sipping a drink with in the backyard a few weeks earlier or bumping into them in the mall or swapping stories at a family gathering. Not this.

  It wasn’t other people that I found upsetting; it was the loss of normality in every area. I was a really active person, always out and about, running around the football field
whenever possible. Not anymore. Now I was basically chained to a bed, watching the chemo drugs seep into my body, drop by drop. My moods continued on their roller-coaster ride. If I wasn’t in tears, I was frowning and angry and while I tried to remain well-mannered I’m afraid I sometimes gave the nurses who were helping me a tough time.

  One day the orthopaedic surgeon I’d repeatedly consulted dropped by after Dad had called his office to fill him in. Dad, who was in his usual position by my bedside, initially thought he had come to apologise for the fact that what he’d consistently told us was a ‘micro tear’ was actually cancer. Not even close. The only thing he said in his 30-second visit was, ‘Hello Jason. Well, this came all of a sudden. I won’t lie, this is going to be a tough road for you. Good luck.’ And then he left. It was pretty heartless and I started crying.

  Shocked, Dad went into the corridor after him. I found out later that he’d called him to a halt, saying, ‘Doctor, I have a few words for you. I will be as polite as I can. What you just said to Jason in that room was unacceptable. You’re the specialist, yet never did you ask a simple question about whether he’d had an inflamed testicle. If you look up persistent back pain for young men on the internet, one of the first things that comes up is testicular cancer. We kept telling you in our visits that it was not getting any better. We came to you for help. A simple blood test for his blood markers would have found something.’

  The specialist was stunned. Apparently he said to Dad that from that day on he would ask more questions of patients who came to him with my symptoms, and he apologised to my father. Dad replied, ‘You should have said sorry to Jason, he’s the one who needed to hear that. Please don’t let this happen to anyone ever again.’

  Dad has agonised ever since about having accepted the medical advice we were given and not pushing harder for more investigation, which might have caught the cancer sooner. He actually believes he let me down, but really he’s my hero.

  As the days passed post-surgery, I got more mobile. When visiting hours were over I would go for long walks around the hospital corridors, wheeling my IV pole beside me. I started to learn the secrets of my new temporary home. For instance, nurses like to eat a lot of lollies and chocolates at night time, and if you make friends with them they’ll give you some! But it’s probably best to wait until you’re off chemo or they’ll be cleaning up chocolate vomit soon after.

  What I didn’t find was anyone around my age. There were lots of old men in the rooms around mine. Some would be sitting up in chairs, others just lying in their beds, but they all seemed to me to have an anguished look of approaching death. It scared me so much I generally tried to avoid eye contact with them. When we did communicate it didn’t seem to help. A guy who looked to be about 60, who had seen that I wasn’t coping well, came up to me and said he too had testicular cancer and was struggling. I said, ‘Yeah, I’m only 18. All my friends are out at night and I’m stuck here. Imagine how I’m feeling.’ His response was, ‘It’s tough at all ages.’

  At the time the only thing I could think about was how much worse it was for me: he’d practically lived his life, after all. But when I stopped and imagined how I would feel if it were my father fighting cancer at 60, I saw it from a whole new perspective. Each person’s struggle was different, but they were all equally hard.

  I overheard a man in my ward who had lung cancer tell his doctor that as a result of the diagnosis he had cut his smoking down ‘to one packet a day’. I felt very bitter about that. His cancer was self-inflicted while mine had come despite my best efforts to be fit and healthy. It was hard to take, and only gave me more ammunition to feel sorrier for myself.

  One day a youngish bald guy appeared on the ward. I was so excited I ran over to him and said, ‘Hey man, sorry to interrupt, but what cancer do you have?’ He explained that he didn’t have cancer – his dad, who was a patient, did, and he had shaved his head in support. I apologised for my mistake and walked sadly away.

  Chapter Four

  Too often we underestimate the power of a touch, a smile, a kind word, a listening ear, an honest compliment, or the smallest act of caring, all of which have the potential to turn a life around.

  – Leo Buscaglia

  My ordeal was having a big impact on my loved ones, too. Dad was still spending as much time as possible with me. He would be at the hospital by 6.30 or 7 am. Normally visitors wouldn’t have been allowed in this early, but Dad made a point of building relationships with the nursing staff and they could see how much it helped me to have him there. He proved to them he could come in quietly, without disturbing any of the other patients, and so they gave him special permission to be with me outside usual visiting hours.

  We were also very lucky with how understanding my parents’ work managers were. If it was a chemo week, Dad would take paid leave so he could spend three days with me while Mum would arrange to be there for the other two. On a day Dad did have to work he would come in first thing, stay for a couple of hours and then take off for a 9 am start. He’d phone me or Mum or both of us during the day to see how I was going, and when he finished work he’d come straight back to the hospital.

  When I was first admitted he had spent the nights attempting to sleep in a chair by my bedside or resorting to stretching out on the floor, and generally would stay until 9 pm or later, seeing me off to sleep before he left. Then he’d be back bright and early the next morning. He spent countless hours with me, and it must have been exhausting for him physically as well as emotionally. Much later, Mum told me how much it affected him but he tried hard never to let it show.

  Mum, too, stayed strong when she was with me. She and Mel poured their energy into trying to help my recovery. It was their practical way of demonstrating their feeling that we were all in this together. Mum put her organisational skills to use, with a big calendar on which I could count down the remaining days of chemo, and a system to collate and organise my medical records and prescriptions. She consulted a nutritionist about meals she could bring in for me that my body could tolerate, and followed closely the advice to avoid cheese, eggs and fatty food and focus on free-range chicken and vitamin C-heavy organic fruits and vegetables. Meanwhile, Mel made iPod playlists to distract me from the treatments and came up with whatever else she could think of to entertain or comfort me. But, many nights at home, the two of them cried together.

  I’d got to the point where I could move around much more easily and I no longer had an IV pole, except during the hours I was receiving the chemo drugs. I was vomiting more than I’d have liked and didn’t have much appetite, but apart from that I wasn’t feeling too bad, physically. Emotionally, I was definitely still struggling. Every day brought different challenges. Some of them I could work up to, others came as an unpleasant surprise. On one of my morning corridor walks, I found a pair of scales, which I weighed myself on: 65 kg. I’d lost 10 kg in a week. That was a blow. I took a selfie of my upper arm to see how bad things were. Every bit of the muscle I’d built up by pushing myself to lift all those weights at the gym for the past two years was gone.

  But something would soon happen that would make everything a lot easier, though I took a while to recognise that. My friend Kirsty knew about the struggles I was having and wanted to support me. She thought someone who had been through a similar situation might be able to help me and called Cass to tell her about my diagnosis and how hard I was finding it. Kirsty asked if Cass would go and see me and give me the benefit of her first-hand experience. Cass’s mother, Gloria, wasn’t so sure. Her daughter had spent so much time in hospital – was it really a good idea to go back when she didn’t have to, even just for a visit? Wasn’t there something less stressful she could be doing instead? But Cass being Cass, her view was, ‘If I can help him, I have to go.’ So, as she described it, ‘I put on a brave face and went straight to the hospital.’

  Unfortunately she got me on a really bad day. I’d been vomiting all morning. Mel was there with me and at one point she said, �
��There’s a girl outside who wants to see you. Her name’s Cassie.’

  ‘Cassie who?’ I asked.

  ‘Cassie Nascimento.’

  My immediate thought was, No way a hot girl is going to see me like this. Kirsty had come with her and they sat outside patiently.

  ‘How about you see her now?’ Mel said to me after they’d been there for a couple of hours. ‘She’s been waiting so long.’

  I ended up letting them in, but what I remember of that conversation was very little. I was still on a high dosage of morphine and kept dozing in and out. Kirsty led the conversation while Cass would chime in with her support, saying how she went through a similar situation and that I would be fine. However, within 10 minutes, a nurse came in to do some check-ups, and I was onto the next visitor. Before they left, Cass was able to get my mobile number and later that afternoon I got a text message: IT WAS SO NICE SEEING YOU BRIEFLY TODAY. I HOPE I CAN COME AGAIN WHEN YOU’RE FEELING UP TO IT.

  I didn’t message her back. I was really struggling by this stage. On the rare occasions when I did have a healthy appetite, food tasted strange because of the effects the chemo drugs were having on my body. I was tired all the time, sleeping 10 to 12 hours a night and still waking up exhausted enough to have more naps through the day. It got harder and harder for the nurses to find a good vein when they needed to and their repeated attempts were painful. It didn’t help that the process made me agitated. But I couldn’t seem to find a way to stay calm when I was being repeatedly jabbed, even though I knew it had to happen.

  At first I tried to get my head right by remembering what it felt like when things got tough on the soccer field. I’d say to myself, ‘All right, it’s just like those games when you get to the last five minutes and every part of your body wants to give up. But you can’t, so you don’t. You stay focused, embrace the pain and push through, because the desire to win is greater than the pain.’ It worked for a short while early on but I found I just couldn’t sustain it – I couldn’t make myself believe it was a valid comparison. In soccer, you just had to wait out the clock and your job would be done. Your body might want to quit but your mind retained control because you knew that, as bitter as it was to lose, even if that did happen you got to run back out there the next week, refreshed and ready to have another go. Win, lose or draw, you moved on. This was completely different.