Better living with lung cancer

Last night I received an email from my wife (I’m away for a few days) entitled, The book I thought to write. For those of you who don’t know already, Fiona is my primary care giver and medical advocate. She does all she can to stay up with the latest about lung cancer and treatment developments. Fiona has been a huge help to me and a number of others in understanding our condition and making wise decisions about the way forward.

On Sunday night we attended this year’s event—Shine a light on Lung Cancer. Something happened at the event that disturbed both of us. A man with mesothelioma spoke about his diagnosis and condition, and at one time described consulting ‘Dr Google’.

“He shouldn’t have to do that!” Fiona exclaimed, and I agree.

If a patient has a life-threatening disease or a terminal illness, then they shouldn’t have to be scouring the internet to understand their disease or to know what to do next. Good, accurate, up-to-date information should be readily accessible and made available to all who need it. In a world that boasts the technology, resources and medical advances that we enjoy, we should be able to get what we need without having to hope we stumble across it.

This led Fiona to the Lung Foundation Australia website. We haven’t been to this site before, because we weren’t aware of its existence. Maybe we should have been, but the reality is that besides being the biggest cancer killer, lung cancer rarely gets a mention in the media. Sure, there is much said and written about the risks of smoking—but there is virtually nothing in the media offering support to the patients and survivors of lung cancer.

Just compare this with the ubiquity of publicity and support being offered to the breast cancer community—and I don’t begrudge this for a minute. The work of the McGrath Foundation should be the benchmark for all cancers support organisations. If only lung cancer received a small portion of the empathy offered many of the other cancers.

We also learned at the Shine a Light event that the government is shrinking funding for the support of lung cancer patients. Surely the government number crunchers, the economic rationalists, and even the most hard-hearted bureaucrats can do the maths. The cost of lung cancer to our community versus the money put into supporting those with lung cancer and other lung diseases such as mesothelioma ought to seriously embarrass everyone. Yes, we should aim to prevent it where we can, but we should also aim to have people well supported as they face the traumas ahead.

Anyway, off my rant and back to my point! Fiona has wanted to get good info into the hands of those who needed it, and had even contemplated writing a book to this effect. And then, on the lung foundation site, she found it. And she emailed it to me…

Better Living with Lung Cancer—A Patients Guide

I read this book last night and was amazed. It’s really good. Well produced, good information, easy to understand, positive and encouraging. So why doesn’t every person with lung cancer, and every carer, have a copy. From time to time I go to a support group for those with lung cancer, but I haven’t heard it mentioned. We are pretty well-informed in this area, and have been on the journey for two years, but only just stumbled upon this resource.

So go the publicity machine!

This book exists in two forms—a pdf copy that is also available chapter by chapter; and a printed handbook that you can order for $18 (including postage in Australia). I’ve now read through the online version, and ordered a hard copy. I still prefer real books!

The chapter topics show the coverage of this resource and you can link to each chapter separately…

Contents by chapter

1. Post this, or another link to the book, via twitter, Facebook, Pinterest, email, or whatever you do, to all those you know with lung cancer or caring for those who do.
2. Ask your oncologist or GP whether they are aware of this resource and suggest they get a copy or copies to offer their patients.
3. Encourage the Lung Foundation to print up postcards, flyers, leaflets, business cards (all of the above or something even better) to make available to patients on diagnosis, pin on notice boards in hospital waiting rooms, and the like.
4. Write to your local health minister and ask them what they are doing to support people suffering from lung cancer—and recommend they invest in this resource to make available to those who need it.
5. Contact the Cancer Council or other cancer support organisations to encourage them to get behind this and other similar resources.