It Started with a Tooth Ache

Friday 21 January, 2011 by Susan

It was one of my rear teeth and the dentist had insisted that it needed to be removed. I remember walking out of the dentist and heading towards my Mum's car, when the vision of my Mum in front of me and everything around me became blurry. I could see two or three images of things.

My Mum at the time thought I was being silly, as though I was mucking around. Being a kid and all, it was the kind of playful act I would/could put on.

For about a week my eyes were looking in opposite directions and the conclusion from our local GP at the time was that the dentist had hit a nerve.

I was lucky that my parents weren't so naive and decided to seek a second opinion.

It was Thursday the 12th of November and the next day, on what was to be my 6th birthday on Friday the 13th (mind you I make reference to this date, because I was also born on a Friday the 13th) I had a big Birthday party scheduled with all my friends from prep level primary school expecting to see me.

My parents told me that we were going for a drive and that some doctors at the Royal Children's Hospital were going to have a look at me.

I was scared and remember it being late and I asked my parents not to take me in there, for the doctors would find something terribly wrong with me and I wouldn't be able to come home.

I remember laying in the out-patient ward whilst they attended many tests on me. I knew even as a child that this wasn't good.

The next day, I remember being in the car and getting out whilst holding my special doll - a cabbage patch doll my Mum had bought me for my Birthday, named Viviane.

I was terrified as we unpacked the car and my family, including my grandparents, led me into the hospital. I was that day diagnosed with Rhabdomyosarcoma: a tumour in the shape of a football, which sat between my ears and nose, next to my brain.

I remained in and out of hospital for approximately 2 years, both undergoing chemo and radiation at Peter Mac. I was a high-spirited child and being sick and weak wouldn't stop me from dancing, doing cubs, going to school (in my dancing costumes and a wig mind you), making chocolate cakes in my ward bed and covering them with Smarties.

My parents would feed me stories about how little men would travel into my head and take out bits of rock. I believed them.

Living away from my family was hard, I was scared to go to sleep at night or when visiting hours would be over because I didn't want to be left alone and couldn't quite understand what my body was doing to me to keep me away from the people I loved.

My friends and family would often visit me and send me cards and gifts; heaven knows how many soft toys I still have.

There is so much I could touch on and I don't often now, being 29 going onto 30 years of age this year, really speak with too many people about my past. It's a big part of my life and always will be.

My parents were told when I was diagnosed that no-one had lived through what I had to date and that the success rate ... well ... was not good. They gave my parents a choice and I'm grateful that they are such strong people. (Perhaps my Mum more than my Dad.)

Life after was harder for me as through school, kids were mean: as they are. I was strange to them.

I developed a barrier around myself to protect myself from their cruel words, wig pulling and bullying.

It shook my confidence when my parents decided to separate me from my friends when I went to high school and being an individual and having troubles opening up to people, well, didn't wear.

High school was my biggest nightmare and although I got into uni I didn't pursue it; I was scared of a recurrence of what I had been through in high school.

Life's tough being different, unique, special, and although many people see it as inspirational, on the inside we are all human and have some weak points.

I'm pretty normal looking these days as I had jaw surgery, 2 sets of braces (that I was allergic to, mind you) veneers and I have to wear my hair down as it never really did grow back in some sections after all these years.

I was also on grown hormones, which got me to an average but small height of 5'2 (and-a-half, which I will always claim).

My hearing is slowly deteriorating and I've recently been for some tests where people have told me that as the surgeons had cut my ear drum taking out a section of the tumour, I should have been told never to get my ears wet. As a result, and because of the radiation/chemo damage, I'm being told that I do need to get hearing aids.

Though I don't want to admit that I do need them, because for so many years all I have tried to do is to be normal, or like everyone else. I think I made a pretty good cover up.

Every now and then I drop by to my old ward at the RCH, surprised that some of the nurses and doctors are still there. What angels they are. Some of them, I feel, will never change.

I wish I could be someone who could make such a difference to people's lives.

This year I'm currently reassessing my career direction and what I want to get out of life.

I want to be someone who does 'make a difference'.

I'm trying to find a job that will allow me to do that, not only for myself, but for my family, the people who helped me live and everyone who has been around me and supported me over these years.

Make it count, hey! Will always be my motto and my energy for life.

P.S I hope this hasn't been too long for you and thank you for having such a facility that allows me to express myself in a way that I don't believe I have ever been able to before.

If you or someone you know has Rhabdomyosarcoma, you may find it helpful to call the Cancer Helpline on 13 11 20 and speak with a cancer nurse.  You can read about Rhabdomyosarcoma and its treatment on the American Cancer Society website. We also have a section on Cancer and children.
Updated: 21 Jan, 2011