News from OZ

Posted on: February 17th, 2012 by aussieangel 4 Comments

Hi everyone and greetings from Australia,

Just wanted to share some information with members that may help.  As you may be aware from my story I am a 13 year CUP survivor and have been the facilitator of a general support group here in Australia for the past 11 years.  In order to try and reach people who may not have the opportunity to physically attend a support group, either because of time, distance etc, my son and I have been doing a free weekly podcast for some time now and the feedback so far has been very encouraging.  Please remember that we are amateurs, but are enjoying doing the podcasts, we do not give any medical advice but try to cover a different subject each week.  Naturally some of it is relevant only to our local area but we have tried to include general information with the idea of encouraging people to seek out similar resources in their own areas/country.

As we are also about to launch a local CUP group, the podcast this week has been about CUP, and I have included information about this site as well.

I would be pleased to hear your feedback if you are able to listen to any of the podcasts [details below] as to whether they are helpful etc.

We also do a daily quote and tip on twitter!

Take care everyone and thank you for sharing your stories – this is how we learn and grow.

Lyn

 HERE  -  http://itunes.apple.com/au/podcast/cancer-support-group-candles/id453422769 

HERE  -  http://candles.podbean.com/ 

OR HERE  -  http://twitter.com/#!/candles_cancer

  1. John (Moderator)

    Thanks Lyn. I listened with interest. You may have noticed that we have something of an Australian theme to our conference in April – this is because I think you are ahead of the UK! The conference programme is here: http://www.cupfoundjo.org/conference/programme.html

    John (Moderator) says on February 17, 2012 at 3:13 pm

  2. Great podcast – good to hear your story Lyn. It’s nice to know I’m not the only one to have this diagnosis.You give me hope! I am so pleased that you can publicise this and hopefully get more research into it in time.
    Berni
    :-)
    http://pokerlibrarian.blogspot.com

    BerniW says on February 17, 2012 at 5:14 pm

  3. Thank you John and Berni for your comments. Although I would love to be able to go to the conference in April it just isnt possible at present. I wonder if there will be transcripts available later for those unable to attend?
    You told me more about what is happening here in Australia John than I knew! I will follow up on that.
    Although I am a trained consumer advocate I do very little advocacy work – my role is mainly in the psycho-social support area. Over the years I have tried on numerous occasions to contact people/organisations who are mentioned in relation to CUP but as I have mentioned to you before John, they dont always respond. That in itself is disappointing and frustrating, as I believe that we can all help each other in some way. Is it because I am not an academic?
    I have always made myself available to speak with anyone diagnosed or doing research etc as I believe, particularly with CUP, the answer lies within our experiences.
    The Cancer Council of NSW recently published a book on “Understanding Cancer of Unknown Primary” which is available as a download from their website if any of our members are interested in having a look. I dont know if there is a similar book available in other countries. Just google Cancer Council NSW to bring up the site.
    Thanks again for your comments.
    Lyn

    aussieangel says on February 17, 2012 at 11:12 pm

  4. Greeting from Australia!

    How great to hear from another Australian. We need to know about one another. Lyn, it’s good to meet you on Jo’s Friends. I will be in contact.

    I have recently set up Australia’s first lobby/advocacy group – CUP Action, for people affected by CUP, their supporters and health professionals who live in Australia.

    The site may be of interest to others outside of Australia. It includes a ‘what is happening in Australia’ and ‘new’s’ sections and some information about what I’ve been doing to help get CUP a profile.

    I was diagnosed with metastatic neck cancer unknown primary in Feb 2009. I have been advocating for CUP since October of that year when I began to feel a bit better. It’s been a long, slow process!!

    We need a collective voice to be heard. If you live in Australia and want to be involved in CUP Action, please contact me through the website:

    http://www.actiononunknownprimary.org

    Thanks! Jane

    Janeb says on February 23, 2012 at 4:44 am

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