Arohanui Hospice is a soft place to fall, for families dealing with cancer. And given the events of the last decade, the Kingi family has needed that softness.
Hawea Kingi and his family had never heard of pheochromocytoma cancer in 2012. When the scary-sounding name was given to them, to explain why Hawea was suffering massive headaches and acute vertigo, it took time to process the fact that he had a rare cancer that attacks the body’s adrenal glands.
“I’ve worked in forestry all my life, and vertigo’s not a good thing there,” Hawea said. “My blood pressure went crazy high, I developed a bleed on the brain, and then the diagnosis came in.”
It’s not a curable cancer, but nobody talked about that straight away. The doctors worked on longevity for Hawea, operating to remove tumours as they grew. The first was on the adrenal glands, and seemed very successful. But cancer is sly; it lurks, then pounces when life seems to be returning to normal.
“It came in yearly cycles, thereabouts. They’d operate to remove tumours. I’ve lost a kidney, adrenal glands, they’ve cut out a section of bowel, my spleen and part of my pancreas.”
One problem is that pheochromocytoma cancer is rare. There’s not a lot of data about what works and what doesn’t. And everyone’s reaction to treatment is personally idiosyncratic, so the only thing to do was to try things and hope.
Hawea went through seven rounds of chemotherapy. It didn’t work for him. Then in 2019 an experimental drug came out of Japan. The family were offered it, and decided to try. He went to Auckland for the experimental radiation — but it didn’t take. “My body wouldn’t absorb it.”
Two years ago, the family was told there was nothing more that could be done to check the cancer. The family was handed over to Arohanui Hospice.
Hawea says “everything went up a notch” when the Hospice got involved. He was in awe of the care he’d received from the hospital system, but the Hospice was something really special. Hawea calls it true, as in truthfulness. Facts are faced, and everything possible is done to help the patient and the family.
“They’ve become part of our family. They form relationships with you. I can’t imagine how they do it, but they go through the hurt that the family is going through. They come with you. It’s not robotic… they’re crying and hugging you.
“It’s true. Honest. My wife’s the other half of the big hurt, I’m worried that she’s trying to be tough for me, but she can talk to people here. She can talk to Sharon, the social worker, and there’s always help here.”
Hannah nods. Tells the story of the night Hawea’s morphine pump failed, and kept failing. Hawea was at home at that stage, and Hannah said the family must have phoned the Hospice 20 times that night. Each time, help would come.
“When his pump malfunctions, it sets him back three or four days. Just three or four hours without his medications, and he’s doubled over in agony ,” Hannah said. “This place… it doesn’t matter what time it is or how often you need help, no question is too hard. If they can’t help, they find somebody who can. The whole place… they’ve become part of our family.”
The other difference between hospital and Hospice nursing is something extremely important to Hawea. In hospitals, while staff do their utmost for patients, there’s not the same sense of partnership. Hospitals are geared to moving patients through, so the next patient can be helped. The Hospice is there for the long haul, right to the end and beyond.
“They’ve got time here. And I feel like I’ve got control, to manage my body. There’s this sense of being heard when I ask questions, or talk, and I’m not just trapped in a bed. Here it’s about listening to me, they give me the options but I manage myself,” Hawea said.
“There’s nothing the medication can do to cure me, so it’s about acknowledging that the end of life is knocking at the door. They get on your side, and they do their utmost for you.”
Their daughter Aria’s wedding was a case in point. Hawea was in the hospice at that time, not at all well. The staff knew about Aria’s wedding, and Hannah said that Operation Wedding just swung into action for the family.
“He was determined… they were determined… everyone was… that he was going to walk Aria down the aisle, give the Daddy speech and dance with the bride,” Hannah said.
“The staff just rallied round and made it possible,” Hawea said.
And the birth of their granddaughter, Aria’s daughter Naia, named after their son Manaia, had given the family and the Hospice team a “massive burst of joy”, Hawea said. Little Naia arrived a month ago, four and a half weeks early. Hannah had hard work to support Hawea in the Hospice and Aria at the hospital’s neonatal ward, but Naia’s early arrival meant Hawea has had extra time with her.
“We’ve had beautiful moments with her. Cuddles and love with Papa, she’s just been a healing balm for Hawea,” Hannah says.
Hawea said that at this stage, he had very few regrets. The family had talked deeply when they’d been told nothing more could be done from him, so the last couple of years had been about spending as much time as possible together, so there’d be the least amount of regret when he did pass away.
“We’ve all got closer. I want to leave the relationships as good as possible — that’s the upside of cancer, it gives you time.”
“It’s a gift,” Hannah agrees.
What does bother them is the Hospice’s funding situation. It seems crazy that a place so good and so necessary has to fundraise, go cap-in-hand for donations, in order to keep offering services that families dealing with terminal illnesses need so desperately.
“If there’s something I’d really like to see, it’s donations for the Hospice. To help continue this service for others,” Hawea said. “I’m not ill wishing anyone, but I think if the politicians spent time here, the way we have, there wouldn’t be any problems with funding.”
