Friday, January 3, 2014

GOT A MOMENT? I COULD USE YOUR HELP!

I need your help.  I've decided to roll up my sleeves and dig into a project.  It's not my project, it's really a project for all of us.

Sex.

Sexuality.

Intimacy.

Cancer, any cancer, doesn't just quietly come and go.  I'm not breaking any ground with that statement and I'm certainly not breaking any ground when I say that cancer's tentacles find their way into almost every corner of our lives.  The deepest and darkest corners seem to be those surrounding issues of sexuality and intimacy.

It seems to me that this is an aspect of our lives that isn't discussed at great length and it seems to me that is a tremendous disservice, particularly when we talk about quality of life.

We are sexual beings.  Intimacy, or lack thereof, can help steady our step or it can cause the bottom to fall out from beneath our feet.

I've been digging around and I can't really find anything that is written from the perspective of the voices that really matter most:  Those of us who've been diagnosed with cancer and our partners.

There are some doctors who are doing a fabulous job of opening dialogue with their patients.  The question is, however, are we being completely open and honest?  It's not exactly the easiest subject to discuss.  How can our clinicians help if we aren't able to speak in ways many of us might find to be quite bold?

Yet, the only way to shine a light into that darkness is by speaking openly and honestly and boldly.  I have plenty to say, yet it's not something I've discussed with my oncologist.  These are conversations that take place within a close circle of inner friends.

Even with those closest to me, they are not easy conversations.  Many of us are suffering in silence.  Or we may be having a great time behind closed doors.

I've launched a project.  The website went live a few weeks ago and it was done under the cloak of anonymity.  I wanted to think it through before I fully committed to it but I have come to realize, the minute the aha light bulb illuminated above my head, I was already all in.

Share Those Moments is my baby.  Please take a look at the website where I've outlined the project and what I hope to accomplish.

I have already received input from a number of people and from what's already been shared, I know this has the potential to be life changing for every one of us who has struggled with our sexual relationships and issues surrounding intimacy.

There is nothing more powerful than hearing your story, told by someone else.  You know.  When you are listening to someone and the entire time, the only thing you can do is shake your head, in a state of, "Really???  You feel that way, too?  You mean it's not just me?"

I'm here to tell you it's not just any one of us individually.  It's all of us, collectively.  This is, I believe, what they call, crowd sourcing information.  This needs a crowd.  A big crowd.

I expect the stories are going to have a common theme.  Our scars, the lack of sensation, our partners who may fear they are hurting us.  And on and on.

Please consider sharing your story.  I've set up surveys.  All of the links can be found on the website.  And even if you don't want to share your story, please help me by sharing this information within your circles.

Our power to change this lies in the vast number of people who are affected.  The more people who are willing to tell tell their stories, the better it will be for all of us.

I have vowed to protect the identity of anyone who chooses to share any information.  Although survey monkey does register IP addresses, I'm not savvy enough to figure out how to trace that back to the person behind the screen.

Besides, I'm not looking to invade anyone's privacy.  I'm looking to help.  I'd like to make a difference.  I'd like to see a book written that addresses the concerns that we live with on a daily basis.  I'd much prefer to place the facts in front of our medical professionals rather than have them try to jump into our heads.  Without a complete and true picture, they have no chance to guide us.

Let's make a difference.  Together.

I hope you have a moment to spare.

(Now, before I chicken out and hide behind that anonymous thing, no time like the present, thus, I'm hitting the publish button.  The address of the site for detailed information and to participate is sharethosemoments.wordpress.com)


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11 comments:

  1. Good for you! I've shared on FB & Twitter. I hope you get more information than you can possibly use. Love & hugs. Happy New Year.

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  2. I'll definitely be checking out the website. There's much on my mind in terms of intimacy. Let's just say going back into menopause is NOT helping my sex life. Oy. I'll save it for your website, and maybe a website. ~Catherine

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  3. This is such a good idea, and I love that you're making the website anonymous. While I would like to share my experiences more openly, I also feel a need to respect the feelings of my husband, not to mention my 2 teenagers.

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  4. I'll be checking the site also. Great idea. I wish my doc would talk to me more about issues concerning this. Sometimes I feel I am alone in my feelings regarding feeling sexual.

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  5. I'll be checking out the site, too. There is much to be said on this topic, but I think sexuality is a taboo issue for people still. I like the way you put it: hearing your story through someone else's.

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  6. I am impressed by you, inspired by you and grateful for you. Keep up your great work.

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  7. dear AnneMarie,

    I went right to the site! it's such an important topic and an awesome step forward towards helping so many break through the taboo by giving us a chance to tell our stories about thoughts, feelings, and experiences . like Cindy, above, I'M IN!!

    much love and light,

    Karen XXXXXXXOOOOOOO

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  8. So excited to see you are kicking off 2014 with this project - and I can't think of a better person to do it. Good luck!

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  9. I just completed the survey AnneMarie. Thanks for undertaking this worthwhile project and doing it with everyone's dignity and anonymity in mind. You continue to open doors and pave new paths. Keep up the good work!

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