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.

My last 2 weeks in brief

I'm going in to hospital tomorrow for another chemo session so I want to try and get another post in before I go.

The last post I did where I mentioned what I had been up to was when I went to Healesville.  I just checked my diary and that was back on the 26th of August.  I will now check my diary to fill you in on what I missed telling you.

On Wednesday the 29th,  we were going to go to the movies with my friend Melanie, Patrick, Andre and her Japanese border.   Melanie won 2 free tickets to Lady Chatterley and invited me to take the second one - the others were going to buy tickets.   Since the whole showing of the movie was just for freebie winners, they allowed all of us to go in for free.  So that is a trick you might like to try next time you win a freebie at the Classic - bring all your friends along too. 

The next day I had a cousin down here visiting from NY.  We went on the foodies tour of Vic Markets.  There are organised tours around the food market and we learned a few interesting facts.   It was lovely to see my cousin again.  I saw her almost exactly a year ago when I was in the US - same trip where I met Patrick.

After dropping her off, we then caught up with Judith who was down from Sydney attending a Palliative care conference in Melbourne.  That was handy for me.  Apart from being great catching up with her, I was able to discuss the latest pain drugs out there.  The next day Dave - her husband came down for the weekend so it was also fantastic to see him.

Which reminds me - not in my diary because it was unexpected - Stephen also dropped in from New Zealand.  His father had an emergency heart operation and so when he knocked on the door I was taken by surprise.  It was a pleasant surprise - and good that his father recovered well too.

On Friday I went to work for yet another farewell lunch.  This time the PD Manager.   It is sad when all these people are leaving and all the changes are happening while I am away. 

Sunday was fathers day and I organised to have a picnic in the park with my parents, brother and our partners.  That was my second picnic in just a week and winter is only just over by 2 days.  That is because the weather had been absolutlely perfect.  Almost everyday for the last fortnight has been wonderful.  I just love it when the sun is out.

The next day we were going to watch 'White Planet' at the classic because I won another freebie but Jack had some free tickets to a comedy club so we went there instead.   Damn, 2 freebies in one night.  I keep getting free tickets to the Classic Cinema because I'm on their mailing list and they have competitions all the time where you win a double pass if you are one of the first 50 to respond.   Well I seem to be sitting in front of my computer all day so as soon as I see an email from the Classic I reply straight away.  There you go - 2 tips about getting freebies at the Classic.

The next day was Patrick's birthday and he wanted to go to the 'Little Hungarian' for dinner.  I organised a few people and a cake and a nice time was had by all - I think.

Just on Sunday, my parents had an auction for their unit which we all thought went very well. They're selling up and going to a retirement unit.  They are feeling very relieved that all the pressure is over with and now they can go and retire - Almost 20 years after they should have.

I was hoping I would be able to be in Granada Spain in just under 2 weeks for friends of mine who are getting married.   Well it wasn't to be but if Raquel and Don are reading this, I hope you have a fantastic time.  I know it will be a lot of fun and hope you all the best for a wonderful life together and of course wish I could be there too. 

Well tomorrow I go back for my fifth chemo session.  I'm getting pretty used to them now.

Be sure to check my previous post about the Alimta Campaign.

Photos: 

On the top left is My cousin Elana from the US in the middle at a family Friday night dinner.

On the right is my parents with the new owners of their house after the auction.

Bottom left is Dave and Jude down from Sydney. 

 

Alimta Campaign

Max and Paul have both told me off for being slack with my blogging so I better get to it.  

Anyone in Australia might have noticed lately a lot of publicity in the media about mesothelioma and in particular Alimta, the chemo drug used to treat it.   Well it's not always used to treat it because it isn't on the PBS list and not everyone can affort it.   

Well it is on the PBS list if you have lung cancer from smoking but not if you have it from asbestos.  It varies from state to state but about 30-50% of mesothelioma patients can't get the drug for free and yet so far it is the drug with the most promising results.

I've been lucky because for this round of it, Medibank private, my health fund have agreed to pay - which is not that common apparently.   Otherwise it costs about $20,000 for a round of 6 chemo sessions.

Here is a link about it from the 7:30 report that you can watch. 

They did a story on it last week.  There has been a lot of media about it lately because there will be an appeal in November to try and get the government to change its mind and put it on the free list.  The government's arguement is that there is no real cost benefit.  Well I can tell you that there is.  If anyone has seen me before and after the chemo they will know that.  

I wrote to the Asbestos Diseases Society of Victoria who are involved in the Alimta campaign to ask them how I could get involved.  They said that I should write to the politicians.   Tony Abbot, the Minister for Health and Nicola Roxon, the Shadow Minister.  They also said I should send a letter to John Howard and Kevin Rudd.  

If anyone is interested you can send letters to c/o Parliament House Canberra, 2600 or via their electorate office (see www.aph.gov.au and click on House of Reps and Members) and also your local federal MP as well.  They also sent me documents with all the talking points so if anyone is interested I can email you the documents.

Update:  Since I posted Medibank Private have rejected my payments for Alimta.  I am hopeful they will be paid by another means but it involves a legal claim so I will write about it when it is over which hopefully will be soon.