Tauranga woman Sue Wall-Cade lives with stage 4 metastatic breast cancer - a terminal diagnosis that thrust her world into a cloud of uncertainty. Despite the shock, grief and pain of the past two years, the grandmother known affectionately as Nunu has fought. And it is because of her, future cancer patients will now have better access to a life-prolonging drug considered a game-changer in the medicine world. Parliament confirmed this week it would approve Pharmac funding Kadcyla. Wall-Cade shares the impact living with terminal cancer has on her daily life, how it has changed her, and the legacy she will leave.
A black wool headband frames Sue Wall-Cade's attentive face, topped by short auburn hair.
A vivid pink and orange scarf highlights a pink smile as she sits at a round wooden table, relaxed bejewelled hands in front of her.
Wall-Cade is not worried about the thundering grey skies and torrential rain outside. She's quick to start talking about the need for Pharmac's budget to be doubled. She'd know. She spent countless hours over the past two years researching the Government agency when exploring cancer treatment options in New Zealand.
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When the conversation turns to her, the grandmother of four is thoughtful and measured. Her blue eyes look out the window towards those grey skies.
It has been more than two years since Wall-Cade was told her breast cancer had returned. Her diagnosis was terminal. Her journey since has been one of justice, love, grief and exhaustion.
"I want to say cancer hasn't changed me - but it absolutely has," she says.
"I treasure my friendships far more. I'm probably more tolerant in every way, probably more aware of other people's illnesses or situations, and a huge learning curve was learning another language - I never thought I'd learn cancer language. I never thought I'd have to know what I do now."
Wall-Cade spent much of the past two years researching life-prolonging drug Kadcyla (also known as T-DM1 or trastuzumab emtansine) and questioning why the drug, which was costing cancer patients about $10,000 a month, was not being funded in New Zealand.
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In 2018, she began a petition, supported by other Metavivors (a mix of the words metastatic and survivor), calling for better access to the life-prolonging drug. This week, Parliament confirmed the drug will be funded.
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The news was a victory for Wall-Cade, who says that while it might now be too late for her, she took comfort in knowing other future cancer patients won't have to "go what I've gone through".
But there was heartache.
Wall-Cade pauses a few seconds while thinking of those cancer patients who died without being able to try Kadcyla, unable to afford the medication privately.
"That's the real hard one. They could still be here."
Wall-Cade is warm and polite but tired. She's currently dealing with pain in her pelvis and waiting for scan results to determine whether it's from her cancer spreading.
She's concerned but knows the battle with cancer is as much a mental fight as a physical one.
"You just never stop thinking about it on a daily basis. It's constantly in your head - that wearying.
"It's wearying thinking about your demise, it's wearying thinking about when that will be. And you can't help it. Unless you're in it, no one will understand. And as much as I try to push it away, I can't.
"It's almost not so much about the demise and the death. It's how I get there. What's it going to be like getting there?"
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Wall-Cade says keeping busy with her job in the kiwifruit industry and spending time with and confiding in friends helps a lot.
"I've got a group of ladies that talk to all of the time and they try to push that away, that big black cloud."
A group of Metavivors recently visited Taupō and released flowers into the Waikato River in memory of their "sisters" who lost their battles with cancer this year.
Wall-Cade delicately wipes away silent tears but her voice and focus remain measured as she admits it was hard not to imagine "when will it be me".
Wall-Cade admits she's a realist. Any plans she makes are done with some trepidation, given she does not know what the future will look like in a couple of months.
She has also become accustomed to prioritising accommodation or trips based on cancellation policies, and those which allow free cancellation that week.
Wall-Cade is no longer insured for anything that might come back linked to her cancer, such as taking a fall and breaking a bone - a bone potentially made more fragile by cancer or treatment.
"It's quite sad."
And any ache or pain is quickly met with the worry of "is that just an ache, or has the cancer spread?".
"It's that uh-oh feeling," Wall-Cade said.
"Everybody feels the same. Everybody's senses are heightened for that odd little twinge. Yes, we do share that."
Like many metavivors, Wall-Cade has a scan every three months determining where her cancer is at.
"So we constantly live in three-monthly cycles of knowing whether we are okay or not okay."
Wall-Cade copes by keeping busy.
"I've got a very busy head, period. I always have."
Her Kadcyla project also helped, more than she had hoped for. Not only will the Government now fund the drug, but it also widened the criteria for applicants.
Wall-Cade said that while it might be too late for her, she took comfort in knowing other future cancer patients won't have to "go what I've gone through".
It's a legacy she hopes will make a difference.