Monique Vandersteen’s story

Tell us a little about yourself

I'm a mother of 3 teens and also work full time as a disability support worker. I love animals and have heaps of pets!

Tell us about your brain tumour journey

I went to the optometrist in 2015 due to my eyes not working together properly. I developed a lazy eye. They referred me to the hospital and I was put through a lot of tests for a while before they decided to do an MRI. That's when I got the news, I have a brain stem lesion. But it's only 50/50 that it's a tumour!

Apparently, it could also be inflammation from an autoimmune disease. I was put through lots of tests to rule out immune issues.... All came back ok. So I was told it was more likely a tumour and radiation was discussed. A biopsy is not possible due to location. So I had radiation early the next year.

My first MRI afterwards, my oncologist told me that I had Pseudo progression and I had no idea what that meant. He didn't explain it, all I heard was progression and I had been told before hand that there is a chance radiation can make the tumour become active. So I thought I had just made the biggest mistake ever and was about to die.

Anyway, my tumour has been pretty much stable since. I have encountered a couple of professionals along the way who I wish I didn't have the delight of meeting. But this tumour and my journey has taught me so much about life and the world.

How has the brain tumour impacted or changed your life?

I have left sided weakness and it has affected my eye sight. I get tired easily and my memory is bad when I'm tired which affects my parenting.

I've learnt not to sweat the small stuff. Also I hardly worry anymore about the future because what will be, will be. We don't truly know what the future holds for any of us so we should just live every day to the fullest!