After some deep breaths I said I wanted time alone, and reluctantly Dad stepped outside. I lay there staring at the ceiling, thinking about all the things I’d assumed I’d get the chance to do in life. It felt like they’d been snatched away from me. I was so scared, but I was angry too. Cancer is an indiscriminate, ignorant, heartless prick, I raged to myself. What the hell did I ever do to make it turn its terrible spotlight on me?
My friend Adrian had left Shellharbour Hospital when we found out I was to be transferred and had picked up Tomic and another friend, Sebastian, and brought them in to Wollongong Hospital. By now it was morning and my extended family had also arrived. Dad told the assembled group what the doctor had said. Uncle Luis stepped forward and said he’d like to speak to me privately. He gave me a framed photo of Mitchel that they used at his funeral, and told me that I wasn’t alone in this fight – Mitchel would be watching over me with each and every step.
When Luis left, we were both crying. Dad tells me that as Luis went to leave he said, ‘I wish I could talk to Mitchel again,’ and the two brothers embraced, sharing their pain.
My thoughts kept returning to the fact that this was supposed to have been my year of gaining independence. I’d planned to live at home for about six months until I was settled into my job, then move out. This first post-school year was meant to be about finding my feet, taking on responsibilities and moving into adulthood. It was about taking my first steps towards a career that would allow me to do something that made a difference. It was about, perhaps, falling in love – not a schoolkid’s crush but a real connection. And maybe that girl would even be the one I would go on to make a family with so I could pass on to my own kids all the wonderful things my parents had taught me.
But all those dreams and plans had vanished. Now I would be just as dependent as a tiny baby – my very life was in the hands of doctors who I hadn’t even met yet.
I racked my brain, asking myself whether there was anything I could have done to prevent this happening. The only cancer that had touched our family was lung cancer. Both my grandfathers had died of it, and even though I knew how much my parents had loved their fathers, when I thought of their deaths it wasn’t with sadness so much as frustration at the idea that they had in part brought that fate on to themselves by smoking. The doctor who’d given me the diagnosis had assured me that the ‘sack whacks’ had nothing to do with the cancer, other than helping me bring it to my GP’s attention. They certainly hadn’t caused it or made it worse. This was just something that had happened for no apparent reason, just one of those things. That made it even harder to accept.
A male nurse came in and explained the sperm-banking procedure. He said I would have to ejaculate into a sterile cup, which would be taken straight to the health department’s sperm bank facility located within the hospital. They were planning to delay surgery as long as possible to give me the best chance of getting some sperm put aside for potential use in the future.
While the nurse was still with me, another male nurse came in. All testicular cancer patients were, apparently, assigned a nurse liaison who would oversee their entire treatment, and he was mine. He introduced himself as Mark. I quickly saw that he was a kind man, with a compassionate manner. But it was also clear he was very, very busy, with many other patients to care for besides me. He said he had good news: only one testicle needed to be removed. He told me the operation had been scheduled for 6 pm and he would be back to see me later. Before I could ask any questions Mark was gone.
The first nurse started talking again about sperm banking. The combination of the intense pain and the news I’d received made it impossible to concentrate on what he was saying. I remember the phrase ‘future conception of a child’ floating by me and then something about the correct way to handle the cup. I had to remain under observation until the operation, which meant I couldn’t even go to the sperm bank elsewhere on the hospital grounds. Instead, I had to use the bathroom attached to my room. Uncle Luis would wait nearby to take the sample to the sperm bank. I was trembling with fear thinking, I’ve just been told I might die and now you expect me to sit on a toilet and get an erection so I can masturbate into a container? What the hell!?
The surgeon’s assistant came to see me. She repeated what the nurse had tried to tell me: usually the job of producing sperm was split between both testicles but when one testicle is missing the other would usually compensate, producing enough of the vital male hormone testosterone and the sperm needed to father a child. But the chemotherapy that I was going to have after the operation could affect this in unknown ways. Banking sperm now was an insurance policy in case my reproductive system never returned to normal. She reassured me that the surgical team would take great care of me and that the surgeon, urologist Dr Timothy Skyring, was at the top of his field.
I went into the bathroom with the sterile cup and my phone. Sex was the last thing I wanted to think about, but maybe I could search up some video that would help get me in the zone. I found something that should have worked, but I couldn’t even look at it. I put my head in my hands and cried, slipping down to the floor where I curled up in a ball. The tears wouldn’t stop. Eventually the nurse came to check on me, and I sobbed as I told him that I just couldn’t do it.
Adrian, Tomic and Seb had been at the hospital for many hours, hoping they might be able to see me but willing to stay and lend their support whether they were allowed in or not. Normally visitors wouldn’t have been permitted until late morning, but considering the circumstances the rules were waived and they were given the okay to come into my room. They were in almost as much shock as I was and didn’t know what to say. That didn’t matter, though – just being there showed how much they cared. After they left, the nurses brought me some snacks before the 12 pm food and drink cut-off point before surgery. My last meal had been the previous night’s dinner back at home, what felt like years before. I ate everything, then up it came again, all over the floor.
I had told my mates about my failed efforts to bank sperm. In the hours they’d waited to see me they’d passed the news of my diagnosis to other good friends, and one of them, a girl I was close to, had come in to the hospital to find out what was happening with me. The boys told her what I’d told them and in an incredibly generous gesture she offered to help.
It was so embarrassing to have to go into the toilet with her and try to get it up. She did everything you might imagine to help but nothing worked. For a few seconds I might think it was going to, but then I’d have another spasm of pain from my back or I’d think about why I was doing this in the first place. After 30 minutes I tried not to cry as I thanked her but told her I just couldn’t do it. When she left I gave way to the tears. I thought, I can’t be here anymore. Someone save me.
My whole life had been flipped upside down, but the world kept on turning and everyone out there who hadn’t just been told they had cancer and might die got on with their normal lives. Buses ran, shops opened, office workers groaned at the boredom of the day. All I wanted was to still be part of that world.
I’d been receiving pain medication since being admitted to Shellharbour Hospital the night before, but now they upped the dose because I was still in agony. My relief at the surgeon’s news had given way again to intense fear, but there was one reason to welcome the surgery: the idea that it would free me from this incredible pain.
Finally the time came. I was wheeled down the corridors to the operating theatre. Dad and Mum and Mel walked alongside me. Dr Skyring arrived at the same time, and my father took the opportunity to hug him and ask him to save the son he loved so much. This brought a tear to the eye of the nurse who was waiting to settle me, and Mel was so overwhelmed she ran out sobbing. Dr Skyring reassured Dad that everything should go smoothly. Mum whispered into my ear, ‘Everything’s going to be fine, honey, I promise.’ With a last kiss they left and I was wheeled through and given the pre-op medication, which meant lights out for me.
The surgery took
the expected time, two hours, although I know it felt like an eternity to my family who spent the time praying in the hospital chapel. Dr Skyring sent word that it had all gone well. He had removed the testicle, which was the primary source of the cancer. But the cancer had spread through the lymph system to create the tumour in my abdomen, called a teratoma, which was potentially malignant. That’s what the chemo was going to target. Even if it worked perfectly, dead tumour cells would remain. The tumour should shrink in response to the chemo and maybe even disappear, but only time would tell.
I spent another hour or two in the recovery ward, and when I regained consciousness around 10 pm the nurse brought my family in. I was still groggy and don’t remember too much about it, but apparently the first thing I said after opening my eyes and seeing them was, ‘I love you’. I felt hugely thankful that they were there for me and that, no matter what, they always would be.
The period after this was a blur, as I was disconnected from various wires and tubes (though I still had a catheter in place) and transferred from the post-op recovery ward to the oncology ward, where I was put into a four-bed room with three old men. I do remember regularly pressing the button I’d been given for self-administered morphine, and feeling like I was flying. With my new wound in such a tender place, I definitely needed the help.
Dad didn’t want to leave me alone for even a moment, so Mum and Mel went home to shower, get something to eat and pack up some supplies for us, including some of Mum’s cooking, which I loved and which they were hoping might tempt me back into eating properly. Meanwhile, Dad made himself as comfortable as he could for the night in a chair beside my bed. When I couldn’t sleep or was getting agitated, he would run his hand through my hair. He stroked my head like this over and over, for what seemed like hours, until I calmed down or drifted off. It was a technique he used many times over the months that followed.
By the next morning, the nurses were already encouraging me to get up and try to take a few steps, saying it would help my recovery. I tried to do it, but it was a major effort since I was in so much discomfort. I had a visit from the oncology team, who explained about the chemotherapy I’d be having – what it was and why I needed it.
The spread of some cancers can be measured by the markers they leave in the blood: the hormone human chorionic gonadotropin (HCG) and alpha-fetoprotein (AFP). They told me the acceptable range was 0–6 and my blood tests showed a reading of 1040. This was a sign that the cancer was spreading very rapidly, and even though I’d had the surgery the doctors feared for my life if I didn’t start chemo straight away. And they really meant straight away: I’d have my first dose at 12 pm that day. Even if I hadn’t been spaced out from the morphine, it would have been hard to keep up with what I was being told, but if I didn’t want to die at 18 I just had to trust the doctors – there was no other choice.
The catheter was removed, allowing me to go to the bathroom on my own. Sitting on the toilet, I slowly peeled away the dressing and saw the 14 surgical staples in my groin where the testicle had been removed, and the bruising around the whole area. It was such a shocking sight I almost passed out. When I woke up there were more tears. I felt so scared and alone.
In theory, I now had a brief window before starting my first chemotherapy session where I could have another go at collecting sperm to be banked. But, in reality, I was still too upset by the events of the past 48 hours and in too much post-surgery pain to have any chance of even beginning to masturbate, let alone reach the point of ejaculating. Looking back now, that seems very understandable to me – I’m not sure if many people would have reacted differently. The doctors tried to reassure me the chances were strong that it would be fine anyway, but at the time I was really angry with myself for not being able to get the job done no matter how much pressure I was under.
My moods were all over the place. When I reflected on the chemotherapy I’d be experiencing soon, I thought, Okay, bring it on. I’m getting the hang of things now. How hard can it be? It’s just like a really strong dose of antibiotics, right? That was despite the fact that the chemo team had tried to explain to me a couple of hours earlier what a severe effect the treatment had – it was a poisonous mix of chemicals put into your body with the aim of killing off the cancer, but along the way it would eliminate a lot of good cells as well, leaving you feeling really sick, even though (hopefully) you were actually being cured.
A nurse brought me an information sheet about chemo and a permission form to sign. I said to her, ‘Is it just like waking up with a cold every day for four months?’
She gave me an odd look and said, ‘Not quite, darling. Have a read of this.’
The form explained that the chemotherapy I would be receiving was BEP, a cocktail of the drugs bleomycin, etoposide and cisplatin. I discovered later that the treatment had been developed in the mid-1970s by a young American oncologist called Lawrence Einhorn. His big breakthrough was to use platinum-based drugs, including cisplatin. On its own this drug was too toxic for the human body, but used in combination it had an amazing effect. Before Einhorn brought in this treatment, about 90 percent of men with testicular cancer would die from the disease – 100 percent in cases where it had spread beyond the testes. Now, around 98 percent of stage 1 testicular cancer patients are still alive five years later.
I was really struck by the fact that if I was unlucky enough to develop this disease, I was lucky enough to have been born when I was. If my father had received the same diagnosis as I did at the same age, it would have been a death sentence. As relatively lucky as I was, though, I wasn’t out of the woods by a long way. Because my cancer was so aggressive and had moved into my abdomen, where it was very difficult to treat, my prognosis was still uncertain.
The information sheet spelled out the possible side effects. There was almost a full page of them. The most common were weight loss, infection, nausea and vomiting, hair loss, fever and chills, and changes to hearing. I said to myself that in the same way pharmaceutical companies had to list all the possible side effects in small print on the pamphlet that came with antibiotics (even though I’d never experienced any of them), the drug company that made the chemo had to spell all this stuff out to cover themselves legally.
So it was a shock to the system when right on midday the two nurses who would be administering my chemo arrived wearing full protective suits and masks. Their gear, including the industrial-strength gloves they wore to handle the plastic bags containing the chemo drugs, were bright purple and, like everything else used in the process, had to be disposed of into special toxic-waste bins used only for this purpose.
All of a sudden I started to get scared: I felt like I was about to undergo some hideous experiment in a sci-fi movie. These ‘purple troopers’, as I came to think of them, couldn’t even risk touching the bags this stuff came in, yet I was about to have it injected into my bloodstream. They told me that it would be really important for me to drink plenty of fluids to stay hydrated because the chemo drug residue exits the body in the urine and it was essential I flush it all out. But it was also imperative that every time I used the toilet I double-flushed – the drugs were that toxic.
We got down to business. They asked me to confirm my date of birth, told me the drugs they were going to administer and asked me to confirm I was okay to go ahead. I’d been given the choice of having the chemo via a vein in my arm or what’s called a central line in my chest. The central line is a venous catheter with one end going into a vein near the heart and the other left on the outside of the body. It’s fixed in place with stitches and stays there for as long as it’s needed, sometimes for months. I really didn’t like the sound of that and opted for a needle into a vein near my wrist, though as treatment progressed I wondered if I’d made the best choice.
I’d had a cannula into a vein in my wrist for the operation but they needed to put a fresh one in. The chemo drugs were so toxic that the cannula would need to be replaced often, rather than being used for days at a ti
me as is usually the case. The drugs were delivered via bags of intravenous fluid, which dripped slowly into my bloodstream. With pre- and post-hydrations bags and separate bags for each of the three drugs, there were five in total. It took a minimum of three hours to have the entire day’s dose but, as I discovered, there were many other patients having chemo at the same time, which meant there could be quite a long wait after one bag had finished until the nurses could come and start the next one. So, on a particularly busy day when they were short-staffed, the whole thing could take up to eight hours. More usually it was five hours from start to finish.
In all, I would have four ‘cycles’ of chemo – the maximum used to treat testicular cancer. Each cycle would run for 21 days. With days left clear for extra tests to be run and as a contingency, the whole thing would take about three and a half months. The routine was that on Days 1 to 5 I had the chemo drip; on Day 6 an injection to boost my immune system, then two days’ break, then further days of treatment on Days 8 and 16 with days off in between. The days off were to allow your body to try to recover as best as it could from the battering of the deadly chemicals being put into it. There was also some flexibility about the days on which treatment was given, depending on how I was feeling. Towards the end of each cycle your body’s immune system is trying its hardest to ‘get back online’, only to get shot down by another cycle of chemo. I learned the hard way not to get overly excited about starting to feel better because it never lasted long. All too soon there would be another dose knocking you back down again.
My memory of this time is quite hazy – I had to rely on my family to fill in the gaps. I don’t know if this is because I used to zone out as a kind of self-protective mechanism or because of what a lot of cancer survivors call ‘chemo brain’: memory and concentration problems that hang around fogging up your brain for weeks or months (or, for some people, years) after treatment has finished. Dad tells me, for instance, that on treatment days when the drip had been removed and the chemicals were working their way around my body, I used to groan in a way he’d never heard me do before.
By Your Side Page 5