Childhood cancer can have long lasting effects

Brett was diagnosed with brain cancer in December 1988 – the same night as his year 10 graduation, at 15 years of age. 28 years later, he is thankful to call himself a survivor of the disease.

September is Childhood Cancer Awareness Month – read Brett’s Story

After receiving the shocking diagnosis, Brett endured five months of intensive chemotherapy, followed by two months of radiation. Because the tumours were in the pineal canal in the middle of his brain, he couldn’t have surgery.

Brett is a qualified carpenter, but no longer works in his trade due to the side effects of his treatment. He has been working as a teacher’s aide, helping out in classes for kids with special needs. He has been receiving a disability pension for 13 years, but has been trying to get off it for the past 12, hoping to establish a career in the communication and media industry.

“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 school work, which was unusual for me. According to my mum, I was coming home from school each day and going to bed with a debilitating headache.

On 6 December 1988, the same night as my year 10 graduation, I was diagnosed with germ-cell pinealoma –  tumours in the middle of my brain. Christmas 1988 was spent in my hospital room with my family, which was the best present I could have asked for. I celebrated my 16th birthday five days later with a drip in my arm, a spew bowl under my chin and a party hat.

The chemotherapy made me really quite sick, and I lost a lot of weight in hospital. I got down to 32kgs and was all skin and bone. I also had blood transfusions, lumbar punch, 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. 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.

My self-esteem took a big blow by being so dependent on others. But the important thing is that it was effective in killing the cancerous cells, and my follow up scans have shown that I am free from cancer.

However, the actual kicking of cancer was somewhat easy compared to what lay ahead: the treatment did have side effects on my health. I live with hearing loss (I can’t hear high pitched noises), memory loss (I remember things from 20 years ago, but sometimes not from yesterday), epilepsy and arthritis. My ability to learn has also been affected, and I’m not as physically strong as I used to be.

My physical, mental and social restrictions can be very frustrating to deal with, when I know I was capable of these things before getting ill. I often feel left behind when I see my mates with families of their own, progressing with careers and realizing that I could have been at a similar point.

On the brighter side, I believe that having cancer, beating the odds and coming out the other side has given me an insight as to what is really important in life. Like the simple fact that I can walk, talk and hear reasonably well. I also love being out on the water, surfing (though my limited upper body strength can be a challenge).”

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.
• Doing acrobatics in tiger moth aeroplanes.
• Riding around Mount Panorama, Bathurst on the back of a Harley Davidson.
• Appeared on television. This came about due to a light hearted 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 The Money or The Gun crew took a candid role in 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.

“My family and friends have been really supportive, although my memory can drive them a little crazy from time to time!

My friend Kim has been an especially great source of support. She has supported me in all the years after I finished treatment. It’s been almost 30 years, so I couldn’t be more grateful to her.

I hope my story will help others who have gone through a similar situation.”

September is Childhood Cancer Awareness Month. Help fund vital research into childhood cancer by making a donation to Cancer Council NSW.