Jake Bailey: What cancer taught me

Jake Bailey: What cancer taught me

By  Jake Bailey

BC — BEFORE CANCER

Before any of this happened, I was just a very normal teenager. Okay, I was head boy — or senior monitor as it’s known at my school Christchurch Boys’ High School — but I still did all the things that a normal teenage boy would do.

I had a bit of a reputation for being a monitor who was more focused on enjoying life than achieving straight As, even though I had ambitions. That is not to say I didn’t take my responsibilities very seriously, because I did. But when I was ‘off duty’ I pushed my limits. Some of that came from the pressure of being head boy and the stress that came with it. I didn’t do drugs or hurt others, but every weekend I embraced being young. As I said in the speech I gave at my school’s end-of-year prizegiving, there is a point at which parents need to step back and give young people the space to make our own choices, to become the people we will be.

I was exploring. I still joke about how I probably gave myself cancer. On a normal weekend, I’d go out partying, sleep for four hours, eat takeaways, and do dumb things like riding in car boots — I guess it could be seen as normal teenage boy stuff. To some people, the things I used to do might seem immature for a person who had been put in a position of responsibility, but it was me learning to celebrate my life. Not doing anything too harmful — I was just having a laugh.

Some of my desire to appreciate life may have come from an awareness of death. Seven months before I was made head boy, I sat at the bedside of my nana, my mum’s mum, Elaine Berry, as cancer took her. We were incredibly close. For most of my life I felt like there was no age gap between us. She was vibrant, kind, humorous and wise and, having lost a son and a husband, she talked a lot about enjoying life and appreciating the little things. In fact, one of her regular comments when she enquired about my latest adventures was: ‘Good on you, Jake! None of us get out of life alive.’ They are not her words originally, but she is the one who fixed that idea firmly in my head.

We nursed Nana in her home, and watching her go cut me deep. Growing up, I seemed to go to more funerals than most adults. My middle name came from my father’s uncle, Ross (also my father’s name), who died just before I was born. At six, a teacher I adored died. At age seven, I

saw my beloved grandfather dead on the floor after a sudden heart attack. In the few years BC, I lost other relatives, family friends and, most unexpectedly, a cousin in a car accident. I ended up owning a ‘funeral outfit’ that hung in my closet ready to go.

I remember sitting at Nana’s funeral and hearing all the funny adventures she’d had. Nana used to say kindness was her religion, but she was never too serious about it — she was brilliant fun to be around. It struck me then that I had to make life a daring adventure. Maybe that was when my focus shifted from trying to take out class prizes to making sure there was always lots of laughter, too.

I guess, at times, there has been two of me. The ‘head boy’ me and the daring, adventurous me, and I worked to keep the two worlds apart. Cancer made this impossible. It blurred the edges. I kept some of what I’d done from other people, probably in case they thought less of me. But facing death strips things back to the rawest they can get. So here it all is, laid out on the table. One of the things I have learnt on this journey is that when I make a speech or do an interview, different parts of what I say speak to different people. Some of what I say will be for the teenager with cancer, other parts will speak to the parent, whose child has gone into battle. Whoever you are, I hope you find something of worth.

 

PLANS DON’T ALWAYS WORK OUT

My final year at school was a really busy time for me, I was head boy, and after turning 18 I began working part-time in a bar. So, on a Wednesday, I’d have school from 9am until 2.30pm then I’d go home and sleep for a couple of hours. Then I’d go to work and be at the bar from 9pm until we closed. Unfortunately, closing time varied and, at its worst, it went a few hours into the next day. Then I’d go home, have a shower, sleep a couple of hours and be up at 7am, running late and racing out the door for school. Although it was only on Wednesdays, it definitely took its toll on me. My weekends were always super busy as well. Aside from socialising, I worked hard on my studies and my commitments as senior monitor as well. I took these very seriously.

I remember one occasion, in the middle of the year, when I had a bad cold. I sat shivering in front of the heater after dinner, but insisted on getting up to go to an Old Boys’ meeting at school, while my mother, Janine Harrington, argued that I should be getting into bed instead. I also played football for two teams in the winter, but I broke my thumb about halfway through the season, which put me on the bench for the rest of the games. That was my first ever hospital experience. I even lied to my parents so they didn’t have to worry about it, and told them I was going to a mate’s place when I was really taking myself off to Accident and Emergency. Little did I know what was to come.
Despite the pace, it was the best year of my life. It was full on but it was fantastic, and I was having a hell of a lot of fun. The monitors were a great bunch of young men to be working and socialising with. Basically, I felt like I had to make the most of my final year, because after school everything was going to change. Things would become more serious.

I planned to commence a double degree in commerce and law at the University of Auckland in 2016. I’d been to Auckland on holiday a couple of times, and I decided that it was the place for me. I found the place quite intoxicating —

the size of the city, the fast cars, partying at the Viaduct, a world I’d never seen up close before. I thought I wanted some of that, along with a job in the corporate world. But until then I wanted to make the most of my last year in Christchurch. And then my body hatched an incredibly elaborate plan to get me out of my end-of-year exams.

 

KEEP ASKING QUESTIONS

Somewhere in amongst all that busy time, I started getting pain in my wisdom teeth. The lower two had started to come through, but I had pain only on one side. My usual dentist was away so, on 16 September, I went to see a locum as I thought the teeth were impacted. The dentist took an x-ray and it showed a large mass on one side. He said he could tell from the colour of it that it wasn’t a cyst and it wasn’t an abscess, but he didn’t know what it was.
He reckoned that sometimes nerves could go a bit funny when your wisdom teeth are pushing through, so it could have been that but, as he wasn’t sure, he sent me away to have the teeth removed.

In theory, I could have had this done by a dentist but, because we had health insurance, I had to go to a surgeon to get a report for the insurance company saying that I definitely needed to have the teeth out. It was the insurance company that then insisted I have a maxillofacial surgeon — who specialises in operating on the mouth and the jaw — take my teeth out. Because there was a shortage of such surgeons in Christchurch, the appointments were very few and far between and I was initially told that I would have to wait until January just to see someone, which seemed like a very long time to be in so much pain and unable to eat. Thankfully, due to my mother’s persistent and well-intentioned nagging, the appointment was brought forward to just three weeks away.

I’m guessing I’d probably had the pain for about a week to two weeks before that. Given what I know now, the cancer had probably been there for about a month. On 15 August my school’s first XV had been kicked out of the Christchurch rugby championships by Shirley Boys’ High School, who were one of our main rivals. I’ve joked since that it was losing to Shirley that gave me cancer. Well, it was either that or the huge celebratory night I had when I turned 18 the next day.

The pain in my wisdom teeth was awful. Breaking my thumb had nothing on this level of pain. All I could do was pace around to try to distract myself. I had codeine left over from when I broke my thumb, so I’d take a couple of those, but even they didn’t take the edge off.

I went to the maxillofacial surgeon for my initial consultation, after which there was a whole lot of back and forth between the surgeon and my dentist. Then there were second opinions to be obtained from the hospital. Everything required an appointment, and it seemed everyone was booked up. We were on a conveyer belt and we couldn’t speed up the process.

At this stage, there were no suggestions it was anything more sinister than wisdom teeth that wouldn’t play ball. But, in the meantime, the pain was gradually getting worse. It spread from one side of my face and started to affect the other side as well. The skin around my jaw started going this weird purple colour. Then I lost feeling on and off around my lower lip and chin.

On 9 October, I had a coffee with Jemima, a girl I had been seeing for a few months. We weren’t dating at the time but we’d been hanging out together a lot. The reason she wanted to meet me that day was to tell me she didn’t want to take our relationship any further because she was so busy. It was the start of the athletics season — she’s a 400m track athlete — and she also had end-of-year exams coming up. She didn’t think she had time for a boyfriend as well. Plus, she was planning to move to Australia at the end of the year (she’s an Australian citizen and was going back for university and her sport), so she didn’t want either of us to get too attached.
I was feeling pretty flat about it, so I drove down

to Timaru to see some friends. As I was driving back from Timaru, the pain kicked in again. This time, I lost the feeling in my chin and it didn’t come back. It’s returned now, but it’s still a very altered sensation — the area just below my lip remains really tickly and sensitive.

By this stage I’d also dropped a bit of weight. At the time I thought it was just because I hadn’t been able to eat solid food for a while but actually it was because my body was fighting so hard against the cancer.

When I got back from my trip to Timaru, a friend invited me to his house and it turned out Jemima was visiting a friend next door. We caught up and, although I was feeling rubbish, we stayed up until late talking and I managed to change her mind about the whole relationship thing that night. We talked about taking chances, and I went from being dumped to having a girlfriend all in the same day.

A few days later, at the end of the school holidays,

I went to bed and just couldn’t get up the next morning. I was absolutely broken. My whole face felt like I’d had a local anaesthetic and, to add to that, I would throw up every time I ate.

The dentist had given me some painkillers, which

helped a bit, and he’d also given me some anti-inflammatories to reduce what he thought was swelling. The idea was that they’d bring the swelling down, which would release the nerves and allow the feeling in my face to come back. I was meant to be taking the anti-inflammatories with food, but I couldn’t eat. I don’t know if it was taking them on an empty stomach or the cancer, but I started throwing up blood. My body was slowly shutting down.

By this time, I had two dentists and two maxillofacial surgeons trying to work out what was wrong with me and what they should do about it. No one seemed to know what was going on.

Once I started throwing up blood — on my mum’s carpet for maximum horror movie-style effect — we decided it was time to head to Accident and Emergency. The doctors there didn’t think it was anything too serious but they did some tests, which showed that my kidney function was really altered. The doctors thought it was a result of my body being dehydrated from vomiting or digesting my own blood, when it was actually because my kidneys were full of tumours. I know now that they were the size of massive grapefruits — they’re usually the size of fists — because they were so full of cancer. No follow-up was booked and I was sent home within two hours — at 4.30am.

At home I headed back to bed. School had gone back, but I didn’t have the energy to get dressed, let alone get out of the house. The waiting time between appointments seemed endless. But as the next appointment available for the surgeon to remove my teeth wasn’t until January, I thought I’d just have to put up with feeling terrible until then. The prospect of not being able to eat solid food for three months was pretty grim — little did I know that I could have been dead by then.
During this time, I was referred for an MRI by a hospital maxillofacial surgeon. My mum rang daily to find out when the appointment would be. She was told that she just needed to be patient. After a week of these phone calls, the hospital finally admitted that the form had been lost and I was told that the appointment would be ‘triaged’. Their idea of treating something with urgency and Mum’s differed a bit, because the form didn’t come through until three weeks later and, thankfully, by then I was already in hospital having chemo.

The dentist then decided to take two of my wisdom teeth out himself, as he could see I was in a really bad way and he thought it might help. As he took one tooth out, I heard him say, ‘That doesn’t look too good!’ which isn’t really what you want to hear when you’re lying there in the dentist’s chair. He took photos of the tooth and then scrubbed chunks of tumour off the rest of my teeth (without realising what it was) and gave the extracted teeth to me to take home. They sat on my beside table while I lay in bed dying.

At that point, everyone thought I’d start feeling better because the teeth were gone, and because what I thought was an infection would clear up. Of course, neither of those things occurred. In fact, I started feeling worse. Up until that point, everything had had a rational explanation.

I was throwing up blood because my stomach was stripped by the anti-inflammatories. I was losing weight because I wasn’t eating solid food. I’d lost feeling in my face because there was an abscess pressing on the nerves. It all made sense. Except, of course, there was something much more sinister going on.

Things could have happened differently. They could have been better. They could have been worse. At the end of the day, I still would have had cancer. I don’t believe that either one of those things will benefit from being dissected too thoroughly. It is what it is.