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    If you have popped over here from my facebook page could you please add comments in the blog rather than on the link on facebook itself. I dont want to worry YD unnecessarily Thanks. You can now use your facebook log in so you dont need to enter extra details if you like
  • All about Gertrude

    Gertrude is the name we decided to call my cancerous breast hence the title of this blog. Although I had to keep my breast through chemo and radiation due to the nature of IBC - once it 'blew up' it no longer looked like my breast and I couldn't wait to get rid of it. Calling it Gertrude was a way of seperating it from myself. This main page is where I write about the general goings on that relate to Gertrude, there is another page that are more a diary of treatments etc This blog is a public blog so although I am being very honest about my battle with Gertrude I have "changed names to protect the innocent" - because everyone can see it if you write comments on the blog pages please use the same abbreviations for other family member or friends that I do. Please feel free to ask questions if you want clarification because then other people who might have been wondering the same thing can read your question and our answers.
  • Abbreviations

    OH- Other Half (Hubby), OD- Oldest Daughter, MD- Middle Daugher, YD- Youngest Daughter, SB- soulja boi MD's fiance in the army (now ex fiance), OD's R OD's partner, BS- Breast surgeon whose initials just happen to be BS as well, BC- our GP (family doctor), Dr H- my medical oncologist, all other friends family etc will be referred to as initials etc
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  • SUSAN’S ARMY

    No Princess Alone button

Australasian IBC Network

I have been talking about doing this for several months now with the women I have met in New Zealand and Australia.  I had been collecting emails from the international IBC mailing lists I belong to, but had been too caught up in my own life and health to do anything about it.  With joining the committee of Breast Cancer Aotearoa Coalition and knowing if we started the group they would support and publicise it through their networks, it gave me the impetus to put the idea into action.  I sent out emails to the addresses I had plus sent a message though to the mailing lists to pick up any ‘lurkers’ I may not have contact details for.  Within 4 days I have had positive responses from just about everyone and as of today we have 13 members.  It is so exciting to be part of this,  our hope is that we will be able to link up more with women who are newly diagnosed with IBC so they dont feel so isolated and alone.  Belonging to the international forums is good but there is a need for a more localised network, one that understands how our health systems work.  With Inflammatory Breast Cancer being rare but also one of the most aggressive forms of Breast Cancer, you can feel that you are the only one dealing with it.  I was lucky that my breast surgeon put me in touch with L , a long term survivor, but most women with IBC dont get that.

Hopefully this network will give them that chance.

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1 Comment

  1. Diane

     /  September 21, 2011

    It is so lovely that you can reach out to others and give each other heart felt support.,cos only you guys know the your true feelings ,emotions,highs, lows,challenges .And yes it is ok to shout f…and dam an curse . it might not change anything but may make you feel a wee bit better for a minute or two

    Reply

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