'She danced until the end.' My 25-year-old sister died of cancer. This is what I want you to know.

"I don't want to die!" 

I could hear my sister screaming through her tears, being held by my mum in her darkest moments. 

I was a room away, but the words pierced through the walls and stabbed straight through my chest. My heart was broken.

We had just found out my beautiful sister, Nicole Catherine Hess, was terminally ill. Her stoic nature and 'ignorance is bliss' attitude were finally broken by a cancer that has now given her a month to live.

Image: Supplied.

Nicole was first diagnosed in October 2018. Her journey with cancer really began with a misdiagnosis, and before too long, she was told that she had a Ewing’s Sarcoma in her pelvis. If anyone knows this cancer, this is not where you want it.

Rounds and rounds of chemo and radiation did not deter Nicole. She fought and fought until her body could no longer keep up with her mind. In around June 2020, we were told the cancer was incurable. In September, it had taken over, and it was terminal. On the evening of October 17, 2020, surrounded by her loving family, Nicole passed away. She was just 25.

This is a story that unfortunately is not uncommon for so many Australian families. Cancer takes lives far too early, and we are losing far too many of our sisters and brothers, daughters, and sons, mothers, and fathers.

Nicole grew up a dancer. She loved Disney. She loved all things that would spur on the imagination to move outside of the real world and take you to a place that only dreams can make. That’s what we loved and continue to love, about her.

Image: Supplied.

Cancer didn’t stop that. There were many days and nights when she could barely walk, yet she would push through the pain and dance in our front room. A big ‘up-yours’ to cancer. If there’s one thing I have learnt from her life and death, is that nothing can stop you, not even a half-basketball sized tumour in your hip.

Cancer and women.

Now, here are some facts:

It is estimated that 69,000 new cases of cancer will be diagnosed in Australian women each year. One in two women will be diagnosed with cancer by the age of 85.

Treatment has come so far. Over 70 per cent of women will survive at least five years when diagnosed with cancer. A wonderful number that can only keep rising with the right treatment and research.

The figures paint a picture, but we do not wish for Nicole, or any other cancer fighter, to be considered just a statistic. These are lives we should not be deprived of. These are lives that should not be taken from us.

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There are systemic issues that were evident during Nicole’s treatment that will severely impact access to treatment for plenty of Australians,from their prognosis to their access to the best treatments. Hospital trips are not cheap, inflation is only making it harder, and our system needs an overhaul.

Add in inequities of income between men and women, and you’ve got a another issue. Frequently, cancer patients will have to tap into their super balance to fund their living during treatment. Women can have between 22 per cent and 35 per cent less super than men. This isn’t to say that men won’t suffer financially during cancer treatment, but it makes you think that there should be a change.

Australia’s social welfare system needs a shake-up. Currently in Australia, for a cancer patient to receive a disability pension, the patient must be terminally ill with less than two years to live. The key issue for people who are not classified as terminally ill is that the policy wording currently requires that a person’s condition must be ‘fully diagnosed, fully treated and fully stabilised.’ This creates a huge barrier for those with cancer to receive a disability pension. Men and women alike should receive the benefits of government support irrespective of the severity of their cancer. Asset tests should come into it, but there is a trickle-down effect caused by cancer treatment that will impact patients and their loved ones. 

This means that cancer patients must rely on jobseeker payments in order to survive. To paraphrase the wonderful Samuel Johnson – we need to move all our spending on war and fighting terrorism to helping find a cure for cancer and supporting the patients. 

And then there are the other costs, petrol, parking, food... all unnecessary stresses during a time where you need to be focusing on one thing, and that’s fighting cancer. In a way, Nicole was lucky.  We are a middle-income family that could support her financially and emotionally through her treatment, and I’d like to think that Nicole felt supported and cared for. There are, however, thousands of Australians who don’t have access to the financial -  or emotional -  support.

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So what’s next? Me, personally, I will keep fundraising and bringing awareness to Nicole’s story. I won’t stop, my brother won’t stop, until a cure, or the right treatment is found to stop cancer.

If you’d like to donate to our current fundraiser, the link is here.

In the meantime, let’s start a conversation, let’s look at the inequities of cancer treatment, and how people in a position to change need to step up to the plate and help women like my sister, who was taken far too early. There is so much to be done with cancer research, but let’s think about those fighting it now, those without a cure, why don’t we at least try our hardest to make their lives as easy as possible.

Everyone has a story. Whether it’s a mother, a father, a husband, a wife, a child. Cancer has impacted everyone.  

Let’s shake up the system. Let’s show cancer patients that they are not alone. Let’s find a cure.

Feature Image: Supplied.