Meeting with the Support Group

Today I went to a support group meeting run by the Asbestos Diseases Society of Victoria.  It was mainly for people with Mesothelioma and their partners.  It was really great meeting other people with the disease.  I have never met anyone else with Mesothelioma before.  We were able to talk about things we were doing like diet, excercise and things we were going through.

There were also two people at the meeting who were talking about a show they were putting together about asbestos.   They were Donna Jackson the artist in residence for the Asbestos Diseases Society and singer Mark Seymour.  He was the lead singer and founder of Hunters and Collectors.   He sang a song he wrote about asbestos and another song from his last album.  I had no idea at the meeting who he was but looked him up afterwards.

Here is a link to his website

I was really surprised to find that there was such a difference in the treatments that people were given to combat Meso.  It seems to depend on who your oncologist is as to what treatment you are given.   Also as far as Alimta goes it also depends on affordability.   Not everybody has free access to it and so some people just aren't able to afford it.   It reminded just how important it is that Alimta gets listed on the PBS when it is appealed in November.  

Leigh Hubbard who is the Executive Officer of the Asbestos Diseases Society said that when they were in Canberra last week to speak to the politicians about it they were received well but there were a lot of other worthy groups lobbying for other drugs to be put on the PBS. 

Patrick and I volunteered to develop a website for the support group so that people in Victoria with asbestos related illness can have a forum.  At the moment there isn't anything.  They were very keen for that to happen.