A story by Steve and Claire Holmes
Steve and Claire Holmes
An Opportunity in Extra Time
By the time Steve Holmes was asked to sign the clinical-trial consent forms, he could barely sit upright.
One Job
Cancer had returned after Steve’s Whipple surgery and spread through his liver and lungs. The pain beneath his ribs made breathing deliberate. He was losing weight, weakening quickly, and his future had narrowed from months to weeks, perhaps days.
Claire, his wife, lifted his arm while Matthew Burge, the oncologist leading the Australian arm of an international trial, placed a pen in his hand.
The room was full of medical people. Steve and Matt shared another language too: both were devoted road cyclists. Then Matt looked directly at Steve.
“Steve, you have one job over the next four weeks: stay well enough to start the trial.”
It was not a promise. It was not even a prediction.
When Steve was first diagnosed in late 2016, this pathway did not exist for him.
Then, while he was still alive to reach it, pembrolizumab became available for MSI-high and dMMR cancers through a new tissue-agnostic treatment pathway. Matt had been appointed to lead the Australian arm of KEYNOTE-158, the clinical trial through which Steve could receive it.
The biology of Steve’s tumour suggested a possible match.
The opening did not guarantee survival. But it created an opportunity where, only months earlier, there had been none.
Steve first had to survive long enough to reach it.
Later, he would describe the moment as a Hail Mary pass thrown as the full-time whistle blew. Every conventional option had run out. This was extra time.
At the time, though, there was no grand metaphor. There was only the next breath, the pen in his hand, Claire beside him, and a single job.
Keep breathing.
The Story That Followed
Two years earlier, Steve’s younger brother Graeme had faced the same cancer. Graeme died. Steve had watched what it could do to a person, and a family. Now he was standing in the same place, with the same disease moving through his body.
What followed was extraordinary. Three days after his first infusion, the pain disappeared. Weeks later, the scans showed no visible tumours.
But this is not a story about a miracle drug arriving at the last moment.
It is a story about what had to happen before that moment became reachable: a surgeon, a sequence of decisions, a wife who never stepped away, a doctor who saw meaning in an obscure biological result, and a man who kept taking the next step when there was no promise that the next step would lead anywhere.
Only later would Steve and Claire understand that survival had not ended their story.
It had given them a new responsibility.
Part OneThe Diagnosis
Steve and Claire had been married since 1989. They were both from Waikanae, a small seaside town on New Zealand’s North Island, and had built a life in Australia with their two children. On the Gold Coast, Steve was known less for stillness than movement. He rode hard and often, a committed road cyclist who measured the week in kilometres rather than days.
Late one Saturday morning in October 2016, he joined a familiar coffee ride from Main Beach toward Burleigh. About a kilometre in, a sudden weakness came over him. It felt like the beginning of flu, but it did not feel right. He left the ride and went home.
The next day, still extremely fatigued, his eyes were yellow. His hands itched. His stools had turned pale and his urine dark. Claire searched for an explanation and said, “There must be something wrong with your liver.” She booked the first available appointment with their local doctor.
Blood tests led to an ultrasound. The ultrasound led to an urgent CT scan. The scan showed a blockage in Steve’s bile duct. An ERCP followed, with a small brushing taken from inside the duct.
The brushing confirmed bile duct cancer, cholangiocarcinoma.
The word did not fully land until the surgeon began discussing a Whipple operation, then stopped when she realised Steve and Claire had not understood what was being said.
“Has no one explained to you that you have cancer?”
Steve answered, nervously, “No.”
They looked at each other. Their eyes filled as this new reality landed heavily.
The cancer was in the lower bile duct, where it passes through the head of the pancreas. Without surgery, the surgeon explained, Steve had less than six months to live.
It was the same cancer that had killed Graeme.
“Just yesterday, I was a person. Today I am a patient. I must become the best patient I can be, so that I can become that person again.”
Neither Steve nor Claire could have known where that thought would lead. But it marked a change. He did not become fearless. He became active.
Claire changed too. She became his caregiver before either of them understood what that word could require. She began to vigorously research, carry appointments, information, fear and the practical work of keeping a life functioning while its foundations were being removed.
Graeme’s illness had given them no map. Cholangiocarcinoma was rare, difficult to understand and moving fast. The family had trusted the system available to them. Graeme died.
When Steve received the diagnosis, he knew he could not be passive inside a system that had no ready answer.
Part TwoThe First Fight
On 8 December 2016, Steve underwent the Whipple operation. It was an enormous attempt at cure. Surgeons removed and reconstructed major parts of his biliary and digestive system, including the bile duct, gallbladder, duodenum, eighty percent of his stomach, the head of his pancreas and surrounding tissue.
The operation achieved clear margins. It had removed the cancer that could be seen.
It had also taken almost everything Steve’s body had to give.
For Claire, it was a different kind of ordeal. Steve was under anaesthetic. She was awake, waiting and mentally tortured through the long operation into the early ours of the morning, receiving partial updates while imagining the high chance of a bad outcome at any moment.
They thought the Whipple was the crisis.
A month later, at home in bed, Steve began vomiting blood and lost consciousness. An aneurysm in his main hepatic artery had ruptured. His abdomen was filling with blood.
Claire was suddenly inside another emergency, keeping him alive until the ambulance arrived. At the hospital, interventional radiologist Tom Snow happened to be in the car park preparing to leave when he received the call. He returned, found the bleeding source and sealed it.
Steve survived by seconds.
Across the Whipple and the emergency surgery that followed, he had spent about twenty-five hours in life-threatening operations. He came out changed in ways that were visible, and others that would take years to unfold.
Recovery was slow. He was weak, badly underweight and trying to regain enough strength for adjuvant chemotherapy through a clinical trial. The treatment was punishing. For six days in every seven, he felt pinned to the floor. On the seventh, as he began to feel remotely human, it was time to go back.
One morning, halfway to hospital, Steve pleaded with Claire through tears to turn the car around. He could not imagine walking through those doors again.
But they kept going.
Then, with only a small number of treatments remaining, the scans changed everything.
The cancer had returned. It was no longer local. There were tumours across Steve’s liver and both lungs, too many in the lungs to count. They lit up on the scan like a night sky.
The tumours under his ribs made breathing painful. Sitting was difficult. Lying on his side was difficult. He was tiring badly.
He had survived the Whipple. He had survived the ruptured artery. He had endured chemotherapy. Yet the cancer had found its way back.
Steve had entered into the later stages of Stage IV.
The original six-month prognosis had collapsed to weeks, perhaps days. In that reality, Graeme returned as a presence. Not physically, but in the knowledge of where Steve now stood. Graeme had died from this disease. Steve could see its ending approaching again.
Then another piece of information arrived.
Part ThreeThe Match
The terms on Steve’s histopathology report meant little to him. MSI-high. dMMR.
To Matt, they meant opportunity.
The words described a tumour with an unusual problem in the way it repaired damaged DNA. In the right setting, that feature could make a cancer more visible to a treatment that helped the immune system recognise and attack it.
Matt was leading an Australian arm of KEYNOTE-158, a phase 2 study of pembrolizumab in advanced cancers. The biology of Steve’s tumour suggested a possible match.
When Steve was first diagnosed, this pathway had not existed for him. Now, when conventional options had been exhausted, it did.
The possible match did not erase the cancer. Nor did it provide a guarantee, in fact KEYNOTE-158 had not provided any prior success in cholangiocarcinoma at the time. But it did provide Steve with an opening.
The difficulty was that Steve was declining so quickly that he might not remain eligible to begin the trial.
That was the moment in which Matt gave him the one job.
Steve did not understand it as an instruction to be brave. He understood it more simply: keep breathing.
He received his first pembrolizumab infusion and went home without knowing whether anything would happen.
Three days later, he was lying on the couch on his left side. Claire was on a bean bag on the floor beside him, close enough to help if he needed it. Steve turned, then sat up by himself.
That was not normal.
There was no pain.
He could breathe.
“Something is wrong,” he said.
Claire looked up. “What?”
“All the pain has gone.”
“What is wrong with that?” she asked.
Then they paused. In a long season of bad news, neither of them was practised at recognising good news.
Steve began to reason it through. The tumours had caused the increasing pain. If the pain had gone, did it mean the tumours were shrinking?
Neither of them wanted to finish the thought.
Claire said, “Maybe it’s the Keytruda.”
Steve had forgotten he had even had it.
He stood up. He moved freely. Then he asked Claire to take him outside into the sunshine.
Those first steps felt like freedom, though neither of them yet trusted them. A new storm arrived almost immediately: cough, sweating, temperature swings, weakness, light-headedness and difficult breathing. At his lowest point, their son Zach arrived home unexpectedly from London. Steve could not even stand to hug him.
Claire carried the load. Zach stayed beside his father. The storm passed.
Hope returned to the room, but it still had to prove itself.
Part FourWhere Are the Tumours?
The first scan after treatment was a day Steve both wanted and feared. Before pembrolizumab, the tumours across the top of his liver had made breathing painful and simple movements difficult. The pain had vanished, but scans, not feelings, would show whether that change meant what he hoped it meant.
When Steve and Claire sat with Matt, he first showed them the earlier scan. The disease was more extensive than Steve remembered: large tumours across the liver and under his ribs.
Then Matt brought up the new scan.
Steve looked at the screen. Then he looked again.
“Where are the tumours, Matt?”
“That’s just it, Steve. There aren’t any. You have had a complete response.”
Steve asked what that meant.
Matt answered that there were no visible tumours and no evidence of cancer.
Steve then said, Matt what do I do now?
“Go out and there an live life,” Matt said. “They have gone, and I don’t think we will see them back.”
Steve and Claire had hoped the cancer might have stopped growing. Perhaps it might have shrunk. Instead, the tumours had disappeared.
They looked at each other in tears. Matt smiled. A long silence followed. It said what none of them could yet put into words. Steve tried to thank him, but could not find words large enough.
The response did not end uncertainty. Life intensified with more scans, blood tests, appointments, rebuilding strength and learning to live with the knowledge that the next scan could change everything again.
Steve returned to cycling in small, unglamorous increments. He once told Claire he was improving because he had passed a parked car going the other way. The joke carried a serious truth. The bicycle had been part of his old life. Riding it again became a way of measuring his return.
After about fifteen months of pembrolizumab, Steve chose to stop treatment. The scans continued to show no evidence of disease.
“There are many that we help a little and some we help a lot, and then there is you. Go out there and ride your bike and do something special with the opportunity you have been given.”
It was not an instruction to become inspirational. It was a challenge to make the time count.
Part FiveThe Question That Remained
For a long time, Steve’s job had been narrow. Get through the surgery. Survive the rupture. Endure chemotherapy. Stay alive long enough to begin the trial. Reach the next scan.
Once the response held, he began tracing the path backward.
The surgeon who looked further. The trial that placed him in the same hospital as Matt. Matt looking deeper into the tumour. The genomic result. The trial. Claire’s capacity to keep him moving. His own ability to remain alive long enough to start treatment.
There were many gaps he could have fallen through.
Steve did not conclude that survival was earned. Graeme’s death had made such a conclusion impossible. He understood instead that opportunity is fragile. It can be lost through timing, missing information, disconnected expertise, exhaustion, lack of access, or the simple speed of the disease.
The question became: how many patients were losing possibilities before they even knew those possibilities existed?
Steve and Claire did not step away from cancer after his response. They stayed close to people facing the same bewilderment. They answered calls. They met patients and families. What began as lived experience became accumulated knowledge through thousands of encounters.
They saw patterns. One earlier question. One expert review. One genomic test. One trial considered before a patient became too unwell. One family helped to understand the system rather than merely endure it.
The Foundation did not begin as an organisation in Steve’s mind. It began as a question created by survival.
If Claire and Steve had seen so many gaps in one pathway, how many gaps were hidden in the pathways of others?
That question always led Steve back to Graeme. Could another question, another clinician, another opportunity have changed his brother’s course? He would never know.
What he knew was that Graeme’s family had been crushed by an early death. His own could have been too.
That was a truth he could not move past.
Part SixWe Stayed on the Field
Steve and Claire could have stepped away from cancer once the scans remained clear.
Instead, they chose to stay on the field of battle.
They began putting their lived experience to work, not as a story of survival, but as practical expertise for the next patient and caregiver facing the same confusion, fear and time pressure.
Their first response was the Patient Navigator’s Journal: a step-by-step process built from the questions, decisions and gaps they had encountered themselves. It was designed to help patients understand earlier what they were dealing with, make right decisions and importantly keep more options open.
That process became a foundation.
As more patients and caregivers began reaching out for help, it became clear that the process inside the Patient Navigator’s Journal needed a home large enough to reach them. It needed to be embedded and scaled through a foundation.
When Steve and Claire considered what that foundation should be, one thing was clear: it had to help today’s patients today. They looked up the word advocacy. It spoke of raising awareness and speaking for others.
But that was not their strength. Their strength lay at the centre of the battle, beside patients, caregivers and families trying to survive it.
Their place was not in the grandstands. They had been on the field of battle and had found a way through. They made the difficult decision to remain there, shoulder to shoulder with the people who needed help now, today.
The Cholangiocarcinoma Foundation Australia, and its public doorway, Cholangio.org, were built around a simple belief:
Earlier understanding creates more curative opportunity, extends life and prevents tomorrow’s diagnoses.
Earlier Right Action delivers it.
That responsibility, to turn lived experience into expertise, became Steve and Claire’s answer to Matt’s earlier words:
“Go out there and ride your bike and do something special with the opportunity you have been given.”
That is where Patient-Led was born. It later became the Patient-Led Declaration: the patient carries the consequence, so the patient’s benefit must govern the decision.
Cure. Extend. Prevent.
Part SevenUpstream
At first, the work was practical. Diagnosis. Surgeon choice. Second opinions. Genomic profiling. Clinical trials. The right person looking again at the right time.
But survival had made Steve curious about a question further upstream.
Why had this cancer happened to both brothers?
Graeme had two children. Steve and Claire had two children. The question was not academic. It sat inside their family.
Steve had survived because someone looked more deeply into the biology of his tumour. He began wondering what might become visible if people looked more deeply into the biology before the tumour formed.
What was happening in the biliary system? In the ducts? In the bile flowing through them? At the epithelial surface? What injury or biological condition had to develop before cholangiocarcinoma became possible?
He kept looking upstream.
The work took Steve and Claire into the biology of the biliary tract and the conditions that precede disease. They were not seeking to simplify biology by bypassing science. They wanted to make it understandable enough to be used, examined and acted on.
Every professional holds a part. Only the patient and family carry the whole.
The appointment ends. The clinician goes home. The researcher returns to the laboratory. The patient and family remain inside the crisis.
For Steve, that is why expertise must increase a patient’s ability to understand and participate. It should not deepen their dependence on a system they cannot see.
EpilogueWhat Survival Became
Steve’s story did not end with a full and complete response. Claire and Steve had accepted a a greater challenge beyond themselves. They had been given time that Graeme and his family did not receive. They had also seen how easily Steve’s own chance could have been missed.
Claire and Steve had been given time that Graeme and his family did not receive. They had also seen how easily Steve’s own chance could have been missed.
So they stayed.
They turned what they had lived through into a way of helping patients and families understand their disease earlier, find the right expertise, recognise options and keep them open long enough to be reached. They built that work from patient response, biological understanding, research, technology, education, community and prevention.
Two brothers. Two families. Same cancer. Graeme died. Steve survived.
The difference cannot be reduced to one drug, one decision or one person. It came through an uncommon chain of people, biology, timing, care, endurance and chance.
What Steve and Claire could do was make that chain more visible for the next family.
They could help ensure that survival knowledge did not arrive after the opportunity had gone.
That became our work.
