Damon woke one Sunday morning with a 41°C temperature.
Such a searing temperature would usually suggest a raging, life-threatening infection, but the hospital could find nothing.
“I was lying on the hospital bed, covered in facecloths, and I had ice all over my body. They couldn’t get my temperature down and they didn’t know where it was coming from.”
It was a month earlier when Damon began to feel unwell. Like so many New Zealanders, he was working long hours, juggling children, and getting to bed late at night. By the time he saw his GP, he was losing weight, suffering night sweats, and had lost his appetite. The fatigue was like nothing he’d ever experienced in his life.
“I was 40 years old and I was always shattered. I didn’t know what was wrong with me. I thought I was depressed.”
The doctors told Damon the worst-case scenario was metastasised cancer, and they began a process of elimination to find the source.
“The weight was really falling off me. I think I went from 103kgs to 78kgs in 12 weeks. It was pretty drastic.”
The first step was a colonoscopy and an endoscopy.
“They put a camera down me, and a camera up me. Nothing. They didn’t find anything.”
The next step, a CT scan revealed black dots on Damon’s liver and what doctors’ initially thought was a collapsed bowel.
Further tests revealed it was far more sinister. They discovered a primary tumour in Damon’s duodenum, the area where the stomach connects to the small intestine. Damon had his diagnosis. It was cancer.
“That was all we knew at that point. I wasn’t 100% clear on where the cancer was or if it had spread. I just knew that it was cancer.”
On December 5th, Damon and Holly, his wife of two years, had an appointment with a surgeon at Middlemore Hospital.
“I remember the day because it was our wedding anniversary.”
The news wasn’t good. Damon had Stage 4 Gastrointestinal Cancer which had spread to his blood, spleen, lymph nodes and liver.
The primary tumour in his duodenum had died, but the cancer had metastasised in his liver. The surgeon said he had six months to live but if the chemotherapy didn’t work, he would be unlikely to survive more than 3-4 months.
“He basically told me to go home and sort my affairs out, and he put me in touch with an oncologist. I remember going for a coffee afterwards and all I thought was ‘how on earth do I tell the kids?’’
Damon’s son, Ethan, was 12 at the time and his daughter, Scarlett, was two years younger. The prognosis meant Damon was unlikely to see his children reach high school.
The oncologist told Damon he had a HER2-postive strain of cancer which is also found in some breast cancers. She recommended Herceptin, which is a drug used in tandem with chemotherapy and publicly funded in New Zealand to treat HER2-positive breast cancer.
In 2008, Herceptin became an election issue when would-be Prime Minister, John Key, agreed to fund the drug if he won the election. He ousted Helen Clark and then by-passed Pharmac, New Zealand’s drug-buying agency, and funded the drug through the Ministry of Health. It’s been publicly funded for 12 years.
In much of the developed world, Herceptin is also used as an effective treatment for stomach and oesophageal cancer, but not in New Zealand. Here, it is only publicly funded for breast cancer.
If Damon wanted Herceptin, he would need to pay over $150k. On top of that, he would have to pay another $2,500 every three weeks to a private clinic to administer the drug. The DHBs, despite having the infrastructure, will only administer Herceptin for breast cancer. That pushed Damon’s bill up over $185k.
It was a monumental sum of money, but he was faced with no choice. Damon could pay for the drug and fight the cancer, or accept he would be dead in six months. He chose to fight, and so began a journey where Damon was literally fundraising for his life.
Damon’s family raised $26k on Givealittle before the local Pukekohe community swung into action and organised a Garage Sale.
“Scarlett was baking donuts for the sale, there was a band playing, people turned up with things to sell, and one lady donated all the sausages for the sausage sizzle. It was an amazing day. Everyone was there.”
The Garage Sale raised over $7k and Cory’s Electrical, Damon’s employer at the time, raised another $7.5k. Over the next six months, Damon adopted a ‘pay as you go’ plan and found $6k every three weeks to fund the drug and its infusion at a private clinic.
“It was tough. Really tough. If I came off the drugs, I knew I would die. That’s a lot to live with. You’re sick from the chemotherapy and you’re shattered, but you have to keep trying to find the money or your life is over.”
Sadly, ten months ago, the chemotherapy stopped working. There was no point continuing with Herceptin because it was a complimentary drug. It worked best alongside its chemotherapy bedmate.
“It was about then that the depression started to kick on. I’d been fighting this thing for three years. Fighting to stay alive. Fighting to find the money. My body was tired. Really bloody tired.”
Three years had passed since his initial diagnosis. He’d snatched holidays with his family and the Herceptin had given him three incredibly valuable years with his children.
“I took my son to his first school formal. I went with him to choose a suit. I picked him up in my friend’s 1967 Cadillac, and I drove him and three of his mates to the ball. It was a very, very special night.”
There was one other option Damon could consider. His oncologist told him about a drug called Cetuximab, a highly effective immunotherapy that could extend his life. The only problem was the cost. For years, gastrointestinal specialists have lobbied our drug-buying agency Pharmac to publicly fund Cetuximab, and while it’s funded in countries like Australia, Colombia, and Venezuela, it remains out of reach and unfunded in New Zealand. It meant Damon would have to find another $20k to fund it.
“If you’re faced with my situation, trust me, you’d do exactly the same. Put yourself in my shoes. You would spend a million bucks if you could, just to spend more time with your kids and the people you love.”
It was close to Christmas and Damon didn’t want to ask his friends for money again. His sister-in-law took over and raised $7k on Givealittle, a platform that is rapidly becoming a mechanism for survival in New Zealand. Damon scrimped and saved and found another $13k. He still works. He says he can’t afford not to.
This time, the drugs are taking their toll. The combination of treatments leaves Damon feeling nauseous and exhausted. His skin is red, dry and cracked.
“It’s a bit like acid going through my body. I have a permanent rash on my face, my fingers are cracked. It dries you out. Sometimes the cracks in my feet are so bad, I feel like I’m walking on glass. But I’m alive.”
In Australia, Damon would have accessed all of his treatment on the public health system for free. In New Zealand, he is the $200,000 man that a community has kept alive.
“I think the thing is, I was just like every other New Zealander. I was just like you. I was rolling through life, having a ball, enjoying hanging out with friends, raising my kids, just getting on with life. Then bang. I was sick and I needed drugs. Modern, everyday drugs. And Pharmac said no. Pay for them yourself.”
If Damon hadn’t accessed the Herceptin and Cetuximab, he would have likely died in the winter of 2018. He’s outlived his prognosis by three and a half years and, as he points out, “I’m still going”.
Damon is now 44, and is incredibly grateful to everyone who has fundraised, donated money, delivered food to his home and supported him to extend his life, and the time he has with his family. But he also hopes that change is coming for New Zealanders.
“Kiwis have it pretty tough. You’re given a terminal diagnosis and then you’re told that our system doesn’t fund any of the modern medicines you need to save or extend your life. Is this really New Zealand today? Are we just sending people home to die?”
Damon doesn’t know what’s next. He doesn’t know what’s around the corner. His only ask is that other New Zealanders don’t have to go through what he has.
“It’s been a hell of a journey. New Zealand needs to start funding modern medicines. Help us to live. That’s all. Help us live.”
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