Tuesday, September 20, 2011

HAPPY BIRTHDAY LITTLE BLOG

Yesterday, my blog turned two months old.  It's my "baby." Since the ages of babies are always marked in months.... or even half months, I did want to wish the blog a happy birthday.  I'm also the newbie in the twitter community of breast cancer survivors and patients and caregivers.  I'm the baby twit.  I'm taking baby steps but it sure feels like I took a giant leap in a short time.


It's a whole new me.  And there will be no looking back.  My late onset wave of grief (which is like the later onset cognition issues) was validated by a wonderful doctor who is an active part of the twitter community.  This is the wonder of the internet and how a circle of strangers can become like family.  I, the very wordy one, in 140 characters (including spaces) said to no one in particular that it was a painful day as I was re-living five years ago.  Dr. Attai, a prominent California breast surgeon responded to the tweet:
It has to come out sometime. Often it is later than you expect, and then it seems so much worse & unexpected. You'll be ok
She was not the only one who responded.  Several of my sister survivors who happened to be online at the time sent me words of encouragement.  Sometimes, ya just don't feel like talking.  Even ME. But, I didn't really feel like being alone with these feelings either.  Their words got me through a dark moment.  I think it's easier to really listen when we are using our eyes rather than our ears. You will have to digest those words with your eyes.  Think about it, get back to me.  I think it makes lots of sense.


Validation is so important.  It's what makes me realize I'm not completely crazy.  I'm pretty sure I would have been beating myself up today if not for those words.  And then, I took the time to reflect upon all of the events that unfolded in my life in the past five years.  I was on "auto pilot" so of course, I didn't take the time to grieve.  There was no time for grief.  I was simply too busy.  Today, I am acutely aware of staying centered.


I am also very much aware of my limitations and I, through conversations with others in these two short months, realize what's in my head is in the heads of plenty of other women.  We need to get a better conversation started so things can change.


There are things that happen when you become a "survivor" and the whole concept has been largely ignored.  Chemobrain is just one thing that affects an unknown number of people.  Journeying through life as a cancer survivor is another thing that is being ignored.  The treatment may be over, but it's not over for the survivor.  We are still living with a disease.  It's not a chronic condition as some would have us believe.  It's an INCURABLE disease until it's not.  You can ask my mom how she felt for twenty years every time she had to go for a mammography.  I'm sure you can ask ANY breast cancer patient how she feels around mammography time.  You can ask my friend Marie.


Survivors are "victims of success" in the words of Dr. Len's article on the American Cancer Society website.  It's time we are all on the same page.  For all cancer patients, no words mean more than to be able to say "I am a survivor!"  But, dismissing the reality that is "survivorship"..... just read on and form your own opinions.  You can get back to me on this, too.






They sound like pretty convincing fighting words if ya' ask me.....






9 comments:

  1. Congratulations on your 2 month bologverserary Anne Marie! You are so right that this phase of our journey with cancer is a complicated one and one that is not always sufficiently acknowledged by friends, family and the medical profession. While the treatments for cancer targets the cancer quite specifically in the body, the experience does not leave the mind, the spirit or the emotions untouched. Some researchers into the area of survivorship have postulated the theory that surviving cancer, fits the theoretical framework of postraumatic stress disorder. It is wonderful that we have the space online to explore our feelings and to feel less alone in our experiences. Keep on blogging!

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  2. I am glad you commented, Marie. There was a sentence in this entry that I deleted so you can amend your comment for me..... It was about mammography freak out. It was at the end of the paragraph and it said, "You can ask my friend Marie." which was supposed to be a link to your entry because that touched me so. However, being a bit challenged the link went to your current blog page..... so PLEASE post the link directly to that entry. It tells the story of what each of us go through during "test time" so eloquently. Love to you....

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  3. Ha! Never mind, Marie..... see what happens when I do things in the light of day instead of the dark of night. I was able to get my sentence back in there the way I wanted it to begin with!!! THAT is chemo brain. I did know I was getting to the entry via a back link and my brain could not determine how to "start to solve the problem" which is a big chemo brain issue. Can I get an "Oh Yeah!" from anyone who can relate to that. The pathway was blocked. This morning.... that pathway works and now the entry is up exactly the way I wanted it to appear. xoxox

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  4. "Oh, Yeah!" Chemo brain, grieving for what was, living with things the way they are and trying not to get too far ahead of yourself. That applies not only to cancer, but in my case, grieving for James. Not a day goes by since Christmas that I don't say, "How did this happen?" I'm told an unexpected death is more difficult to get over than one that's expected. Like you, the Twitter community has encouraged me & lifted me up. Who'd ever thought 140 characters could be so powerful.

    XOXOXO,
    Brenda

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  5. Thanks SO much, Brenda! Yes, 140 characters and friendships are forged. I am so sorry for your loss. SO tragic. And you are right-an unexpected death is far more difficult to deal with-as you describe - walking around saying "How did this happen?" I am glad for the connections I have made and I am thankful to have been embraced by a "global" community. It strengthened me and empowered me in ways I can't even begin to describe. Love,
    AnneMarie
    xoxox

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  6. 140 characters and friendships are forged.Anne Marie you should patented that line before Twitter gets it ;-)

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  7. xoxoxo thanks, Marie....I will do that!!!!!

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  8. AnneMarie, Congrats on your blog's two month anniversary. I'm so glad I found it, or rather, you found mine and that led me to yours! This community is an intricate part of my post-cancer life and well being, more than I would ever have anticipated.

    You are so right in everything you say here. Cancer survivorship is an elusive and much ignored subject. Every survivor continues to live with this disease. It's never over. I wish more people got that.

    So glad to "meet" you and thanks for writing your blog.

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  9. And the feeling is mutual, Nancy. There is a sisterhood of such brilliant women, every single one of whom "gets it" and that is comforting and empowering in ways I can't begin to describe. I'm climbing out of a very deep and very dark hole and the sunlight is simply brilliant. You have all become the wind beneath my wings....

    xoxox

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