Pleuropneumonectomy Support Group

Our First Patient Support Group!

Early in 2011, as part of The Baird Institute’s and the Sydney Cardiothoracic Surgeons commitment to providing post-operative support and conducting quality of life research, we launched our first extrapleural pneumonectomy patient support group.

An extrapleural pneumonectomy is one type of surgery performed to treat malignant mesothelioma involving the removal of a lung.

For some time now, Jocelyn McLean, our specialist lung nurse, and an integral member of the SCTS practice, has been keen to get a group such as this going – and it has now happened!

The main purpose of these “get-togethers” has been to provide support, friendship and information – relating to both the surgery these patients have experienced as well as ways to assist and support general quality of life.

We are very pleased with how well patients have responded to the idea of getting together and so far we have received tremendous feedback from them all. 

Many of these patients participated in our recovery experience and quality of life research, which Jocelyn presented earlier this year at the World Lung Cancer Conference in Amsterdam. Jocelyn is currently seeking funding to conduct a formal well living program for these patients.

In 2011 we held three meetings providing an opportunity for patients to meet and talk to others who have had the same surgery, as well as some of their doctors, nurses and allied health professionals who understand the challenges they face on a day to day basis.

We have received lots of emails thanking us for setting up the group including this email which sums up the positive nature of the meetings and the hope and support that comes from getting together: “I had a lovely time, and it was especially nice to hear about the gentleman who had his operation in 2004, … to hear he is doing so well and will be turning 80 soon.  What a legend!  Such a positive story!”

We plan to continue regular group meetings in 2012.