Personal cancer story
Although it was many years ago, being diagnosed with cancer as a teenager has had a profound impact on my life.
It all started in 1988. I was a healthy and active 15 year old, living life as a regular year 10 student – playing football, surfing and getting into a little trouble. It was about mid-way through the year when I started to struggle with my schoolwork, which was unusual for me. I voluntarily dropped down classes, but it was still taking me longer than it should have to complete tasks. At the same time, my eyesight was declining and I began to see double vision. According to my mum, I was coming home from school each day and going to bed with a debilitating headache.
I was dragged along to numerous doctors who all said that it was just my age. If it wasn't for mother's intuition and her persistence, I might not be here today. We finally found a doctor who referred me to an endocrinologist who agreed that something wasn't right. After trying different hormone supplements, CT scans and spending time at Gosford Hospital, we still didn't know what was going on. Eventually it was an MRI that finally gave us the answer.
On 6 December 1988, the same night as my year 10 graduation, I was diagnosed with germ-cell pinealoma – a fancy name for tumours in the middle of my brain. The one and only time I questioned whether I would die was when I first heard the word ‘cancer’. I had just completed year 10 and had plans of scoring well in my high school certificate so I could fulfil a lifelong dream of being a pilot. It looked like my life would take a different direction.
Two days after my diagnosis, I was admitted to Royal Prince Alfred Hospital. When I arrived at the oncology ward, I was greeted by a team of great nurses who soon became incredible friends. The flashing lights and equipment were overwhelming at first, but it didn't take long for the hospital to become my second home. There is no adolescent ward at RPA, so I was part of a community of people ranging from late teens to middle aged and the elderly.
Christmas 1988 was spent in my hospital room with my family, which was the best present I could have asked for. I celebrated by 16th birthday five days later with a drip in my arm, a spew bowl under my chin and a party hat. Many of the nurses came to visit with birthday wishes and a kiss! Lucky me.
As well as the nurses, I remember my team of doctors fondly. They had a great bedside manner – direct yet sympathetic. I was the youngest in the ward and apparently the sickest, so I received extra attention. No one ever complained, but I felt bad every time I pressed the buzzer for assistance with the smallest tasks. The further I got into treatment, the less capable I became. I needed help sitting up in bed or walking to my chair by the window. My favourite time was when someone would take me outside into the gardens of the hospital so I could feel the sunshine on my skin.
The chemotherapy made me very sick and I lost a lot of weight in hospital. I got down to 32kgs and was all skin and bone. I was constantly nauseous and unwell. I tried to pick hospital foods that would taste the best coming back up! Two fruits and custard and Coke became my staple diet as I could usually keep these down. The fizziness of the Coke felt good when I had a mouthful of ulcers and I still have a strong affection for Coke.
Shortly after starting treatment I noticed an extra hair or two on my pillow case. Then I found it on the sheets, in my food and in large clumps all over the place. The decision was made to shave it all off. One of the nurses had the pleasure and my dad was also there. I still had my eyebrows and eyelashes and didn't mind being bald.
As well as the chemotherapy, I also had blood transfusions, a lumbar patch, CT scans, IVs, an I-Med, a feeding tube and was on a concoction of pills. I think at one stage I was taking 26 pills at a time. All the painful procedures and medication were exhausting. For CT scans, I had to drink a radioactive substance that circulated through my system and showed up on the scans. Another time I had to drink a chalky substance. When my veins started to fail I had a portacath put in my chest to deliver the drugs. The tumours were increasing the pressure in my brain, so a shunt was inserted to drain excess fluid and dump it in my stomach to relieve the pressure. Sometimes I just felt like a pin cushion.
I ended up in a coma on two occasions which was scary for everyone. I saw ‘the light’ and even had my last rites read. Obviously the pearly gates had guards stationed at the time who didn't let me through, which I am so thankful for.
Coming from the Central Coast of NSW and with RPA being in Sydney, it was difficult for my whole family to come and visit regularly. Luckily for me, my dad worked in the city. Every day that he could, he was driven to RPA to spend time with me. If I was asleep when he arrived, he would shove his fingers up my nose or into my ears! He always brightened up my day and soon he became as much of an ‘inmate’ as the rest of us. My mum, brother and sister would come down nearly every weekend to visit me, which I loved, but also occasionally made me feel guilty. Sometimes friends from home would come to Sydney and I loved catching up on their news (even if they spent most of the time rubbing in how good the surf had been!). I often received well wishes from mates, teachers and people I didn't even know, which also helped to lift my spirits.
On a couple of occasions, when I was well enough, I was allowed out for a day or to go home. These trips really made me realise how much I had taken for granted prior to my diagnosis. I was in awe of the colours, smells, tastes and feel of fresh air, outdoors and life in general. Regardless of the weather, I found everything beautiful and I still do. I never take for granted how lucky I am to be here.
Finally, on 10 May 1989 I was deemed cancer free and released from hospital. This date is like another birthday for me. I always celebrate with a beer and cheers.
The actual kicking of cancer was somewhat easy compared to what lay ahead. Back at home, I was still recovering. I spent my days on the front veranda making friends with magpies, sleeping and watching TV. Slowly but surely, I put on a bit of weight and regained enough strength to feed myself, walk on my own, shower myself and get about without help. Rehab at Gosford Hospital and woodwork became a nice release, but I was always exhausted by the end of the day. I started doing odd jobs like working at Sydney City Council with my dad, which helped to get my brain working again. The opportunity for a carpentry apprenticeship with the council arose and I was encouraged to apply. Sure enough, I got the job.
The day I started the apprenticeship was the same day that I started radiotherapy, thanks to the tumours coming back. A plaster cast was made for my chest, abdomen and face so that I was placed in the exact same position for every hit of radiotherapy. Targets were also dyed into my skin on each side of my head so that the radiographer could line up the rays perfectly. I'd just got the bulk of my hair back when after a few shots it started to fall out again on the sides. So I had the hairdresser give me a mohawk.
Fast-forwarding a number of years, I have done a lot of courses and volunteer work that unfortunately haven't led to paid work. I have however had a lot of odd jobs. I did my time as a door-to-door salesman and also worked in hospitality for a number of years. I had a go at collecting eggs from a local hatchery and also worked as a teacher's aide. The treatment has affected my ability to learn, as well as given me arthritis in my knees. I also fatigue easily, so it has been difficult to get and maintain a job. It's sometimes difficult for me when I look at my friends who are successful in their careers and are busy with their families, but I just have to remind myself how fortunate I am to have overcome what I have.
For me, catching a wave always helps me to feel better when I'm having a tough day. I will always remember my first wave after treatment. Armed with a helmet, kneeboard and steamer, I managed to catch one after a couple of futile attempts. I still remember my family and friends cheering for me from the shore. My other goal after treatment was to see my favourite band, The Angels, live in concert, which I’ve done a number of times now.
After hospital I also joined CanTeen, which ended up playing a large role in my recovery. Their camps, day trips and meeting other teenagers who had gone through the same thing as me really helped me to recover psychologically and emotionally. After a year or so I became a member of the NSW committee and subsequently the vice president of the NSW branch. Through CanTeen I made amazing friends, met celebrities and went places and did things I probably wouldn't have otherwise done. A beautiful friend who has sadly now passed, Lace, organised for pilots, Nigel and Alana Arnot, to give CanTeen members the opportunity to fly a plane! I will never forget that day – I fulfilled my greatest wish.
Having cancer may have thrown a spanner into the works for me, but it has had its upsides. Some other things that I more than likely wouldn't have done include:
· Flying across the waters of Sydney Harbour aboard the famous 18ft skiffs.
· Riding around Mount Panorama, Bathurst, on the back of a Harley Davidson.
· Appearing on television. This came about due to a lighthearted documentary about being a teenager and having cancer, titled ‘The Money or The Gun, The Topic of Cancer’. A CanTeen camp was set up and Andrew Denton and crew took a candid look at the insights of CanTeen members.
· Meeting some famous people like Kaye Cottie (solo sailor), Peter Garret and Robbie Hurst (Midnight Oil), and Phil Kearns (former Wallaby and NSW Waratah rugby player).
· Taking part in a car rally on behalf of CanTeen.
· Participating in the 2000 Olympic Games torch relay.
After refusing to believe that the cancer I had was as rare as it was, I recently decided to find out about it. From what I read, it appears that I really am incredibly lucky to be here.
I am so grateful to my family and friends for their continuing love and support. I hope my story will help others who have gone through a similar situation.
Read more stories about people's personal experiences with cancer