Craig Gray says he feels like he has been set adrift in a life raft and left to fend for himself.
After battling a rare blood cancer for almost five years, the Stoke resident has been forced to source life extending drugs from Bangladesh, at a cost of $1100 a month.
This is because Pharmac, the crown entity that decides which medicines are subsidised, does not fund the drug.
“They say my death isn’t a special circumstance,” Craig says. “But I feel my death is a special circumstance. For my family and for my kids it is.”
But despite the outlook and financial stress for Craig, who once was told he had only two weeks to live, he says he is the happiest he has ever been.
“It’s bizarre. I’ve just let go. Not being in control of anything is the best way to be. All I can control is myself.”
It all started in July 2015 when he was working 60 hours a week as the head chef of a local café. Then he separated from his wife and then was made redundant.
He thought it was just stress – but Craig found himself forgetting things. He ran red lights. He would say the same thing over and over. He eventually went to the doctor with what he thought was a chest infection.
When his blood tests finally came back the results were not good. He had stage four mantle cell lymphoma. He was 42-years-old.
“Just that word ‘cancer’. When you face it, it’s a massive kick in the guts.”
He had funded treatment – chemotherapy followed by a stem cell transplant. After several bouts and enduring the painful treatment that would see his immune system stripped, Craig had some good news. He was cancer-free. He went back to work, put on weight and went back to the gym.
Then last July, 18 months after being declared cancer-free, he relapsed. The cancer was back. But this time the chemo put him in hospital.
“The doctor said ‘we can’t give you anymore – it’s going to kill you or make you sicker than you should be’.”
The only option, she said, was a drug called imbruvica, but it wasn’t funded. Craig would have to pay for it himself and she could not tell him where to get it.
So, he went online and found a Twitter account from Bangladesh. He pays for them online and then the tablets come several weeks later. It was a leap of faith.
“It felt very bizarre. Were these pills filled with sand or chalk? I had no idea.”
All he knew is that, to start with, they worked. His condition stabilised. Then they stopped working. His doctor said he had two weeks to live, a month at the most.
“I was by myself. You think ‘oh, my god, is that it’? You look around and people are living their normal lives. And you are thinking, two weeks?”
Initially, he didn’t tell anyone. He just sat and reflected on his life. But then as he revealed his outlook, he found himself talking to family and friends about things he never would have.
Old wounds were healed, and new clarity was found. Then two weeks stretched into three and past a month. He called his doctor and said he was still alive. She told him to keep taking the pill.
It doesn’t cure it but just keeps it at bay. But after paying for rent and his medication, Craig is left with $18 in his account. He is helped by his children but has had to get over his pride and ask for help.
“Growing up with that older generation, it is very hard. It’s a grind.”
He says he is plagued by the question of when the financial hardship might become too much so that he stops taking the drug.
Despite the uncertainty he has found a new appreciation of life. He loves listening to the birds outside his window in the morning and at night. He will find himself shedding a tear watching a young family laugh at the beach.
“That is what it’s about. It’s not the merry-go-round of life we should care about. We forget about the little things.”
He wants people to know that the Government might not always be there to help. But he is also happy.
“I have two beautiful children. I’ve cooked for two prime ministers. I’ve had some good times and bad times. I’ve made people laugh and cry. Hopefully laugh more than cry. But, yeah, I think I’ve done good.”
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