THE entire lining of Ironman Steven Pullen's mouth, tongue and throat came off yesterday because of his chemotherapy treatment at the Brisbane Royal Women's Hospital.
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Yet Steven's re-diagnosis last month, which led to last week's Melphalan treatment, has steeled his parents for the next part of their son's journey.
Port Macquarie's Jim and Bev Pullen were stoic as they spoke yesterday of the changes since Steven's diagnosis was changed from chronic inflammatory demyelinating polyneuropathy to POEMS syndrome.
Six weeks ago a specialist on the Sunshine Coast where Steven lives, concluded that the former Port Macquarie Surf Life Saving Club member actually had the rare blood disorder which causes severe nerve damage.
There are only 120 people in the world with the POEMS, including four in Australia.
"Steven is the third youngest person on the planet with the syndrome, but we're hopeful because he's so young and fit," Mr Pullen said.
Bev Pullen described the four days of shocking pain as Steven had stem cells extracted in the oncology unit.
"They had to take 3.5 million stem cells, and taking them out was just horrible for him," Mrs Pullen said. "Then they gave him these massive doses of chemo if they'd given him one more drop he would have been gone."
The chemotherapy took place on Wednesday and Thursday last week, and Steven's brother Geoff will be travelling north tomorrow to be with him for the difficult weekend ahead.
"Geoff is a nurse and he's figured out that this weekend is probably going to be the toughest, and then we'll be heading up next week," Mr Pullen said.
Steven continues to document his progress via Facebook, which has proven invaluable for his club mates from Port Macquarie and Queensland.
His competitive spirit refuses to be cowed: despite being on an isolation ward and restricted to crutches, Steven has organised a contest with other patients to do laps of the facility.
"The highest number of laps is 10, but he can only do three at the moment," Mrs Pullen said. "But that's Steven," his father interrupted. "He'll invent a competition to keep things positive."
Even in the days following his re-diagnosis the 39-year-old remained entirely focused on being active.
"They found these blood clots everywhere in his body, and the next Sunday he headed out for a paddle," Mr Pullen said.
"I told him he was mad, and he said 'dad, if I'm going to die I might as well be doing what I love.'"
The Pullens said they were overwhelmed by the support from the Mid-North Coast surf life saving community, and believed it had buoyed their son's desire to return to the water.
"He's aiming to paddle for a charity event for cancer in September," Mr Pullen said.
"We're really hoping it's all going to work," his mother said, "because it's the only chance he's got."
