The unlucky unlucky: ‘She wanted to survive’
IT started with a cough – Huhana Rokx was too flat out to chase it up. Months later, in 2017, she was rushed to hospital with suspected pneumonia.
Further tests found lung cancer, but it hadn’t spread. That made Huhana one of the lucky 20-25 per cent who qualify for surgery. But the disease returned.
Huhana turned down chemotherapy. She’d seen how that knocked the life out of people and, in her experience, it didn’t lead to survival.
Her daughter Mero believes doctors took that to mean her mother was giving up.
‘‘She wanted to survive.’’
There was no mention of unfunded drugs, and Mero didn’t think to ask. It wasn’t until they later talked to the Lung Foundation that they discovered immunotherapy drug Keytruda might help. Mero wonders if doctors assumed the family couldn’t pay.
Huhana – who had never smoked – stopped drinking, gave up carbs and sugar and exercised more.
As for many Ma¯ori, isolation complicated her care. Their tribal home is Tokomaru Bay, 90 minutes’ drive from Gisborne. Mero juggled work in Gisborne, looking after three children and caring for her mum.
She watched as her fiercely intellectual mum, a former Ma¯ori Language Commission boss, began losing words. Her joints ached.
The cancer had infiltrated Huhana’s bones and brain. She paid $16,000 for Keytruda but it was too late. A month later, she died of a heart attack after an infection, aged 68. A wha¯nau lost its grandmother, a marae lost a caller of the karanga, a community lost a trusted adviser.
Mero believes if they had started Keytruda earlier the cancer would not have spread to Huhana’s brain. She wishes there had been one person to answer all their questions.
‘‘It was just a really difficult thing to navigate. I wouldn’t class us as a vulnerable wha¯nau, but we still found it challenging.
‘‘So I can only imagine how hard it is for vulnerable wha¯nau... We did get support, but we didn’t get lifesaving support.’’