Kass Hall says she has been living on borrowed time for 27 years.
At 12 she was diagnosed with a cancer so rare in children that her doctor declared her one of only two young sufferers in the world to have the condition. Just as she was embarking on her formative years of high school she came dangerously close to death.
“They called my parents into the hospital five different times because they didn't think I would make it through the night.
Twenty-seven years later, after several major surgeries and relapses that would again bring her close to death, Kass is studying law and campaigning for human rights. But the cancer has never really left.
“I went 10 years [without cancer] and was told I was cured, and then three weeks later I relapsed. I had moved to Queensland and woke up one night in writhing pain. I was taken to the hospital and within 48 hours they found another tumour."
In 2008, Kass was diagnosed with thyroid cancer, which while removed has left her on medication for life.
She also suffered another debilitating relapse in 2011, this time in her stomach and liver, and at 33 was forced to fight for her life again. “They told me at that time that this was probably going to be the one that killed me. The oncologist said if I managed to see my 40th birthday that that would be a very good outcome.
After some genetic testing it was found that Kass had a rare genetic defect that was causing her tumours to return. “What we know now is that the tumours will keep coming back. There's no treatment per se. Only medicine that can slow the growth. "
Despite having what she says is an extremely high pain threshold, living with a life-threatening disorder has meant that she thinks about life and death differently to most people. “The reality is, each day I get older, each day I get closer.
“I can't control this process. I can't control the cancer coming back or when it comes back or where it comes back. My end date is probably going to be sooner than most people. I don't expect to live to retirement age. I have days where it gets in my head, but for the most part I try to get on with my life and make the most of it."
Kass is an avid campaigner for people with terminal illness to be able to choose how their last moments are spent. “I'm not keen on the idea my last weeks and months are going to be horrible and no one has the ability to do anything about it. If you've ever watched someone in the last days of cancer, there's nothing dignified about it, it's a horrible horrible thing. It's gross and it's awful for everyone. If you haven't experienced it up close, if you haven't been in the room, you can't imagine what those last days and hours are like."
She believes introducing voluntary assisted dying laws with thorough safeguards would allow people, including younger people like herself, with terminal illnesses to have a choice over how they spend their last hours. "My first thoughts are for the people I love, and not wanting them to have to sit and watch me die. My husband, he's been there every single step of the way, for almost 16 years. By the time you get to that stage you're talking about quantity of life over quality of life. Once you feel that the quality is gone, then quantity is for other people, not for you.
Ultimately, she says, it's about autonomy and being the one to make the decision.
“I don't want to burden anybody. I want to be able to make those choices for myself."
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