Plot Twist, Life Rewrote Itself Without Asking

There are some battles in life you know are coming, cancer isn't one of them and while this blog doesn't have a lot to do with beauty it is the core reason I set up this online community.

When my daughter Hayley was diagnosed with Myxoid Liposarcoma, a rare form of soft tissue cancer at the age of 24 our world changed in an instant.

Overnight her life became a series of tests, scans, appointments, hospitals, surgeries, treatment plans and waiting rooms. We learnt a whole new language filled with medical terms and specialist jargon.

Her diagnosis was later escalated to terminal within four years of her original diagnosis and everything since has been a whirlwind.

However, nothing prepares you for the battle that comes after, the fight to access funded treatment that could give her more time.

Hope comes with a hefty price tag, Hayley is receiving Trabectedin (Yondelis) in New Zealand which is currently not on the funded medicines list "for her form of cancer." The publicly funded options come with significant side effects and would deprive her of any quality of life.

Imagine sitting in front of an oncologist and hearing there is a drug that can help you and then imagine being told it isn't funded and is going to cost over $9000NZD every three weeks. Not because it doesn't work or her oncologist doesn't believe in it - simply because the funding isn't there.

So now you're no longer just her parents, you become a fundraiser, an advocate, a researcher and a negotiator all while trying to hold your family together.

There is something deeply confronting about realising that the next round of treatment depends on whether there is enough money, so you advocate. The hardest part of that is waiting for someone you've never met to decide if your child can access a treatment her medical team believes is worthwhile.

In the meantime, cancer doesn't wait. It doesn't take a break while paperwork is being processed or care about meeting schedules and budget cycles.

Every single day matters.

We have just received the news that after the latest NZ Pharmac review, funding has once again been declined and while I commend any future funding this is obviously of no value to my daughter. Beyond disappointed not only for our family but for all the other families out there having to self fund.

What's more unbelievable is this treatment that is currently giving Hayley a stable diagnosis, in Australia is 1/7th of the cost. For Hayley, having to move comes with its own set of issues, like leaving the medical team she trusts and has been under for almost six years, her support network and everything else that brings her comfort. There is a massive emotional cost that nobody talks about.

People often ask how we are coping. The truth is, we just cope the best we can because we have no other choice, but the emotional toll is exhausting.

Our story unfortunately isn't unique, there are families everywhere facing impossible choices.

Sharing our story isn't easy, it's deeply personal. But if staying silent means another family feels left alone out on a limb - then it's worth speaking.

I don't expect every treatment out there to be funded, BUT what I hope for is a system that recognises the urgency some families face and that behind each and every application there is a person.

The system as it stands today is an absolute disgrace.

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