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  • 2010 November 10
    From the daily archives: Wednesday, November 10, 2010

    Hello Out There! Are you a cancer survivor, or do you know a cancer survivor?
    I have a project I am obsessing about, and I really think it can help a lot of people. It’s the Victory Rooms project, and you can see that the page is already up there and ready to go!

    What I have in mind is virtual rooms full of survivors, one for each diagnosis.

    When I was going through treatment, I was the only person with Inflammatory Breast Cancer I knew. Now, because of our fabulous internet, I know quite a few. We’re a global community now, so a few people in one spot becomes a multitude when everyone is in one place, even in the cyberworld!

    What if, when I was first diagnosed and my mom was freaking out about statistics etc., we had been able to open a page, see photos or images representing survivors, and could just keep scrolling and scrolling and scrolling?

    Clearly this has to be a collective effort. Will you help?

    What I would love is:
    *your name, first only or full name, pseudonyms are ok too as long as relevant information is accurate
    *an image or photo, happy photos especially wonderful, an image if you don’t want to go public
    *Your birthdate, date of diagnosis, diagnosis particulars(ex: 2/07, Stage IIIC Inflammatory Breast Cancer, Her2+)
    *Your current status i.e. in remission, NED, metastatic (I met a woman recently who had been surviving well for 17 years
    with advanced metastatic BC)
    *anything else (feeling fine, ran a marathon, skipped town and joined the circus, ambassador for IBC awareness)whatever we
    might want to know that would give hope and bring a smile. By the way, those are real examples!

    If you would like to inhabit the pages of the Victory Rooms (oh please say yes!) kindly send all of the above to my personal email address, elizabethdanu@rocketmail.com. I am hoping to be inundated!

    We’re all in this together. Thanks for reading!

     

    Sometimes ignorance really is bliss. After my needle biopsy, while I was waiting for my diagnosis, my mom came to the terrifying conclusion that I most probably had Inflammatory Breast Cancer, even though she really tried to talk herself out of it.

    When I received my diagnosis, I called her up and told her “the scoop”. She did not in any way blow the whistle on herself, she did not in any way indicate how she felt about this news. She asked for Dr. Brown’s phone number so she could talk with her personally, and later called me to tell me that she felt “very reassured”.

    I was perfectly happy to let my mom be the keeper of scary information. I figured she would tell me what I needed to know, and she did. I focused on managing the treatments and keeping my momentum, because I understood that this was what I had to do. I took care of myself, blogged, let people help me, and attached myself to fellow survivors and patients that inspired me.

    I looked into IBC a little more after my surgery. I freaked out a bit then for a few weeks, and then decided that it was a waste of my precious time. My self care program continued to be my focus, and the weeks and months passed.

    Now, nearly four years later, I am surfing the net for fellow survivors. I am finding women who were not so lucky as I was, women who waited too long to be diagnosed through no fault of their own, or whose cancer was just that much more of a cussed animal than mine was. I am aware that although I am past the highest risk period, there are no guarantees. I must use every day to good purpose. This is of course something I want to do anyway.

    This dose of reality is something I can cope with now. Not so much before, when I just had to keep my eyes on the prize, the chance to see my two beautiful children grow up! Now that the worst of it is over, I am more than ready to focus on doing all I can so that others are spared. Getting the word out about IBC has become an obsession. Finding hope and sharing it has become my life’s work.

    Sometimes emulating an ostrich is really not such a bad strategy!

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