“They’re doing another PET scan tomorrow to see what’s going on, and in his words, yeah, my time is running out.”
His wife Claudine died of breast cancer in 2020.
Her cancer treatment became the subject of parliamentary debate about expanding Pharmac-funded cancer drugs.
Unable to afford $6000 a month for her to receive the drug Kadcyla, in 2019 the Johnstone family moved to Australia, where the medicine was available for free.
They had been living in Australia since then, Johnstone said.
Now the sole parent of five children, he said the family’s loss had been difficult for all of them.
Dealing with his own cancer battle on top of that made the last year-and-a-half “a very, very difficult, stressful time”.
“We’ve been dealt a hard hand of cards, you know, but we play the cards we’re dealt.”
A family friend had set up a Givealittle page to raise funds.
This was partly to pay for items the children would need once he was no longer there, he said.
However, its main purpose was to help them enjoy the time they had left together.
“It’ll just, while we can, offer us some more opportunities to do things with the kids, to build memories with the kids.
“I’ve been taking every opportunity that I can.”
Activities so far ranged from movies to a rock concert and a trip to the Australian Reptile Park was next.
Donations helped make this possible, and messages showed people’s hearts went out to the children.
It was difficult to make plans while the situation was so up in the air – the rareness of the type of disease he had made it difficult for doctors to predict how much longer he had, and they were also looking at clinical trials that might help.
However, he hoped they would be able to travel back to Dunedin this year.
The former KiwiRail employee and Rail and Maritime Transport Union branch chairman was part of the fight to prevent the government shutdown of the Hillside Railway Workshops more than a decade ago.
He was among those who lost their jobs in late 2012 when the closure went ahead.
Revived under the previous Labour government, the redeveloped site was set to open this year.
“I’d really hope to bring the children back over to New Zealand for another New Zealand experience but also that Hillside reopening.”
His children had been a wonderful support to him during his battle with the disease, he said.
He technically had a type of squamous cell carcinoma skin cancer, although it initially formed inside the sinuses, he said.
The doctors could not point to anything that may have caused it – it was simply bad luck.
Some of his treatments had been expensive, but unlike the family’s previous experience in New Zealand, he did not feel as if his life had a dollar value placed on it by the government.
“It’s so much simpler and easier for us all because we’re in Australia.”
