An advocate for youth cancer has won the University of Auckland major Blues Award for the most outstanding contribution in the Service and Leadership category.
Josh McMillan, has a colour-coded digital calendar that accounts for every hour of his day in productive squares.
“I have a lot to do and no idea how I manage to do it all; the colour coding is my attempt to track everything I’d said yes to doing in 2024!” he says.
The University of Auckland Blues award winner, a third-year Arts student who majors in politics and international relations and history, is impressive – while also being very low key about it – in myriad ways.
Vice-president and board director of youth cancer charity Canteen Aotearoa, and involved internationally in advocacy, fundraising and advancing youth cancer care, he is also a cancer survivor himself.
“I had a rare form of acute lymphoblastic leukaemia, which is the most common form found in children. I was nine when I was diagnosed, and my older sister had it five years before me.”
“We had the same cancer type, the first known case in recorded history; however, mine was rare with a genetic mutation attached. Doctors were almost jumping for joy (only in a medical sense obviously!) in that they thought they might have discovered something, but in the end, it was just bad luck with no links anywhere to be seen.”
And while both Josh and his sister have now recovered to the extent that they can live productive lives, his sister’s recovery has been freer of side effects than his own, he says.
“I drew the short straw with the long-term side effects, which is just the way it goes; I live now with a heart condition, rare liver disease, and without a spleen, which has lowered my immunity significantly.
“But my sister and I have fun with it, we get to make some risqué cancer jokes at our own expense that our family laugh at, but also say, ‘You can’t say that!’ But we can; we have a free pass.”
His school life in Rotorua, where he had been keen on sports like cross-country running, was broken up by numerous treatments and surgeries, including a year of correspondence school following diagnosis.
“I probably became more academic through it all because I had nothing else to do at home. I was always tired and sick during treatment, and more physically fragile than most on returning to school.”
He says he spent most of high school trying to “keep his head down” rather than stand out. “I was already the cancer kid, so I didn’t really want to draw too much more attention to myself.”
After finishing school he did a few physical jobs, including super yacht painting, which he eventually decided was “too mundane and monotonous” as well as being toxic for his health.
“I’d already had cancer; I didn’t need to get it again.”
But it wasn’t until after a mental health crisis, which led to an overdose at 22, that he had to face the trauma of what he’d lived through and consider what might be next.
“I was having some pretty intense counselling for a year, and that helped me understand and unpack what I’d gone through and had tried to push aside in my effort to be ‘normal’.”
Josh says recent studies show it’s quite common for young cancer survivors to have a delayed emotional reaction to their situation about ten years after the end of treatment; hence the need for what he calls a ‘survivorship programme’.
We [youth cancer generally refers to 13 to 24-year-olds] get to the end of treatment and then we kind of fall off a cliff; we’re supported and supported, but then suddenly, we’re just out in the health system and left to it.”
He says he was “tossed around from urologist to liver specialist to gastroenterologist” but none of them were really working together.
“I believe there needs to be a coherent continuum of care, where you’re supported past the end of cancer treatment, even if it’s just a yearly appointment, and asked, ‘What’s going on?’ by someone who’s cancer-specific and knows about long-term repercussions, because there’re some huge gaps, including a mental health component.”
After getting through his own crisis, he realised he was looking for an intellectual challenge.
“I initially looked at doing sport and rec, but I’m not really a sciency person. I’ve always excelled in history, a subject I love, and I’m also interested in international relations, probably as opposed to politics; the diplomatic, global stuff … how countries connect with each other.”
So he enrolled at the University three years ago and is on track to complete his undergraduate degree this year, in spite, he says, of further health challenges making it tough going at times.
He has also been connecting internationally with other teen cancer organisations around the world; an interest that started locally with Canteen.
“Canteen Aotearoa supports young people impacted by cancer with everything from counselling services to free events and grants as well as personal and leadership development.”
Since then, alongside his university studies, Josh has represented Canteen and rangatahi impacted by cancer at international cancer events, and is headed to Melbourne in December to attend the 6th Global Adolescent and Young Adult Cancer Congress, where he’s chairing a symposia session on survivorship, and will also be presenting the results of his own study.
“My first cancer research study is a survey that draws global perspectives from adolescent and young adult cancer patients and survivors from more than 10 countries and around 15 organisations. It forms the basis of a co-authored presentation with an American friend and collaborator that we’ll give at the Melbourne congress.”
Meanwhile, he’s more than happy to have won a University Blues award, and to have had an evening of celebration before the hard work begins again.
“It was honestly unexpected. I was just happy to be there at all receiving recognition.”
