Jenni’s story

Lung Cancer

I’m a retired psychologist and public servant who has worked in many ways – as a psychologist and in research, policy, and management in consumer affairs, family and community services and health. I’ve worked in Australia and Malaysia. In addition to the many volunteering roles I take on, I enjoy writing, family history, camping, travel and music.

I was diagnosed with bronchiolitis obliterans, from Staphylococcus aureus pneumonia and adult respiratory distress syndrome and critical care myopathy in 1998, and stage 4 liver cancer metastases in my lungs in 2017.

My bronchiolitis obliterans has been very stable for a number of years. I use two puffers, get vaccinated every year and exercise regularly. Since 2010 I have required oxygen when I fly because my saturation gets too low. As a result of my experiences I have written a guide to flying with oxygen to help others navigating the airline processes.

Since being diagnosed with cancer I have had to get my affairs in order because it looked like I had limited time, maybe a year or so. I am onto my second type of cancer treatment, and am lucky to be the first person in Western Australia having access to this drug which is still in clinical trials overseas. If this does not work then there is nothing more. Early results look encouraging.

As a result of pulmonary rehabilitation, starting in 1999 and continuing today, regular exercise has become a permanent part of my life thanks to of three amazing Pulmonary Rehabilitation Physiotherapists who have supported my health care for the past 20 years – Sue Jenkins, Nola Cecins and Jo Cockram. Over these 20 years I have never been hospitalised for my lung disease since my two month spell in 1998.

I retired relatively early in 2005 at the age of 55 but have remained active in many areas of volunteering. I’ve been leading a respiratory support group, a support group network, and a family history group. I also take part in medical student education as a simulated patient and I’ve been a health consumer representative on various committees. I never had to quit smoking as I never started.

Since being diagnosed with late stage cancer I have wound back a little but am working with the several groups that I lead, to help them transition to new leadership and develop greater sustainability for when I am gone.

With a chronic cough for over 20 years I’ve often seen people step back when you cough, e.g. in a lift. People don’t see why you have disabled parking access because you don’t look disabled. Mostly I just get on with things and ignore those who react in these ways. I am not hung up about it. Often people do this because lung conditions are not well understood in the community. I can help that by letting people know.

The advice I would give to someone who has recently received a diagnosis is to become an active manager of your own health. Don’t leave it up to others to control your health care; it’s in your hands. Hunt out good health care professionals that you can work with who’ll answer your questions and get into a suitable exercise program to keep you as healthy and active as you can. Quit if you still smoke, eat a healthy balanced diet and learn everything you can about living with your lung condition.

Sharing your personal experience with lung disease is a compelling and inspiring way for others to learn about and cope with their diagnosis. Your story may also encourage people to identify and act on symptoms they are experiencing, which may otherwise have been ignored.

Share your story, here.