Sharing your breast cancer experience with the media

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13

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  • Giovanna_BCNA
    Giovanna_BCNA Member Posts: 1,839 ✭
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    Well done @Tracey_B!
  • [Deleted User]
    [Deleted User] Orbost, VictoriaPosts: 0
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    Thanks Giovanna
  • Romla
    Romla Member Posts: 2,092 ✭
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    Has anyone thought of allowing some journos like Sue Dunlevy who writes on Healt and Welfare for News Ltd access to this blog  ? It might bring a lot of our issues into sharper focus if that type of journalist is given access even if only temporarily - but not perhaps to the private groups.PS Fairfax newspapers also would have a Sue Dunlevy equivalent. it would need to be thought thru carefully though that there is not a conflict between our need for a safe place to talk and their need to have a story to sell .
  • Romla
    Romla Member Posts: 2,092 ✭
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    Maybe just the ability to read posts like was once suggested to give trainee doctors
  • kmakm
    kmakm Member Posts: 7,974 ✭
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    I have found doctors to be a bit dismissive of this forum. I'm going to be including a comment on this in my feedback to them. Liz O'Riordan, the English Breast Surgeon who got breast cancer, specifically said at the end of her treatment that all BC doctors should spend time reading the forums so they can better understand the lived experience of this disease. I wonder how many do.
  • Romla
    Romla Member Posts: 2,092 ✭
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    Someone did some thing like this last year with medical students - think she took copies of some of the comments @kmakm . Probably wise to get them whilst are younger and less “hardened” by their jobs. Will try to find it on last year’s blog. 
  • Romla
    Romla Member Posts: 2,092 ✭
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    It was @Jane221 who spoke to med students at Sydney Uni last October as part of their Oncology training @kmakm
  • Romla
    Romla Member Posts: 2,092 ✭
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    @kmakm Jane asked us what she should tell the students and many of us contributed ideas. As there were so many I suggested she print the actual discussion.I think things need to come more from us as there is much not covered by others eg longer term side effects of radiotherapy, life after bc , financial implications etc
  • Romla
    Romla Member Posts: 2,092 ✭
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    I don’t think the medical profession can dismiss the voices of thousands that go thru this nor can the politicians especially if the community at large is aware too.PS I have no such concerns with the medical staff I met but maybe I was lucky I dunno
  • kmakm
    kmakm Member Posts: 7,974 ✭
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    @Romla Thank you for telling me all that. I feel quite strongly about this issue. I agree with you about catching them when they're young. A few years ago a friend of mine designed and ran the pilot program to teach medical students how to break the news of a terminal diagnosis. They used actors, each giving a different response. It was fascinating to hear about, and heartening that the medical community knew they needed to improve in this area. Onwards and upwards.
  • Sister
    Sister Member Posts: 4,960 ✭
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    To go back to an earlier point, as far as I know, anyone can access these discussions.  They don't need to be registered users but they are unable to comment on any posts.  They cannot, however, access the closed groups.
  • SoldierCrab
    SoldierCrab Member Posts: 3,445 ✭
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    Sister that is correct 

  • Romla
    Romla Member Posts: 2,092 ✭
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    Well then why are we being asked to share our experiences with the media if they already have access to the information?  Do they just want photo opportunities ?
  • SoldierCrab
    SoldierCrab Member Posts: 3,445 ✭
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    Romla, I can say from sharing my experience with the media regarding the group "Let's talk about vaginas" we need to raise specific information to the media in the correct way and also with the right content....Both KP and myself where interviewed in regards to the side effects on sexual health after a BC diagnosis this is so that the Media can actually do a story that is relevant to the topic. There are quite a few members who would rather just have support and not partake in any media stories etc... hence why BCNA have asked who wants to share their story.... 
  • kmakm
    kmakm Member Posts: 7,974 ✭
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    To get your point across in the media, to catch people's attention, a photo is often considered advantageous.

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