65 Roses Columns

I have been cutting deals all of my life. Not drug deals, but deals with the ones I love. The first ones I remember were when Darryl and I were newlyweds, learning to blend two different lives and varied priorities about free time, money, even chores. I recall proposing that we clean our apartment once […]

It’s winter and that means only one thing to many Victorians: footy. Even after more than a decade living in Australia, I’m still amazed by the hunger and commitment shown by the masses of footyaholics. They roam our cold streets in winter; sit through three hours of glacial rain, overpriced steaming meat pies and chaos […]

Patient empowerment is the new black. There’s a recent proliferation of papers, conferences, and seminars on patient empowerment. This topic is particularly visible in chronic illness where the need for self-management and participation is essential. A 2012 article in The Lancet suggested “In chronic-disease management…we cannot afford not to self-empower. Cardiovascular diseases, cancer, diabetes, obesity, […]

My family was always a sitting duck when it came to head lice. We never had a chance. Our primary school would send home letters regularly. ‘Be vigilant about inspecting your child’s head.’ ‘Warning: There has been an outbreak of head lice in your child’s class!’ Unfortunately for our kids (and our school) vigilance doesn’t […]

I’ve been spending a lot of time courtside lately. Basketball court, that is. And although I once played competitively myself (no surprise at 6’2”), these days I’m mostly watching my son Ellis from the safety of the sidelines. I love basketball. It’s a complex team game and for a team to succeed they really have […]

I woke early in my hotel room in Sydney, maybe stirred by an internal warning mechanism. Rolling over, I instinctively grabbed my phone—and, as a sign of my age, reading glasses—glancing at the screen. There were a number of messages and several missed calls. But one text, from my brother-in-law, jumped at me. ‘Aidan’s in […]

I often find myself flicking longingly through the travel section of the Saturday paper, dreaming up possible trips to destinations as diverse as Alice Springs, Hobart and Istanbul. And so, in thinking about travel and this column I wrote to a group of friends who live with CF to ask how CF has impacted upon […]

Next year he’ll get his L-plates. The year after he’ll sit his VCEs. The following year will be transition time. Can I get that with a script for valium, please? As my eldest son careens toward the supposed age of reason and legality—and his transition to adult CF care—the stories surrounding that mythical world swamp […]

The Irish playwright and poet Oscar Wilde once wrote: ‘We are all in the gutter, but some of us are looking at the stars.’ Living with CF can be painful and soul-destroying. How do we possibly maintain hope—keep our eyes on the stars—in the midst of this? Our family has recently been on a journey […]

Is your hospital providing the best CF care inAustralia? What should you and your healthcare team be doing to improve the quality of care? These questions matter. Over the last 50 years it has been largely improvements in quality of care that have led to a six-fold increase in life expectancy for people with CF. […]

A diagnosis of cystic fibrosis brings many challenges to a family. One of the most difficult for me in my eldest son’s first year of life was the sense that life had dropped me into a battle that I hadn’t chosen and felt ill-equipped to fight. The total lack of control over my life was […]

We all have them. Moments when we hear something so significant, so stirring, that we remember it for years. And repeat it to ourselves, like a mantra, so we never forget. For me, one of those moments came about ten years ago, listening to a Swedish doctor speak about cystic fibrosis care. I was very […]

“Mum, can I have some Stagg Chili?” That one I heard recently, directly after lunch. Then two days ago after dinner: “I’m starving; is it okay if I finish off the pavlova?” With a couple of adolescents in the house we seem to be talking about—and eating—a lot of food these days. Generally I don’t […]

Have you heard of the triathlete Lisa Bentley? She won the Australian Ironman five years running (2002-2006), is three-time winner of the Canadian Ironman, two-time New Zealand winner and finished 3rd place in the Ironman World Championships in 2006. This race—involving a 3.8km swim, 180km bike and 42km run—is not for slouches. Bentley is 41 […]

Summer is here—finally. For many of us, who are living with CF, summer is the chance to catch our breath after a hard-fought winter. Finally we can pack away the tissues, the woolly scarves and the constant threat of picking up one of the countless winter bugs swirling around us. It can also be the […]