About that project..... Share Those Moments. or, maybe (SIC) would be a good acronym. The parenthetical ends are poetically appropriate. It's the afterthought. Or, it's within the confines and constraints we've self imposed.
First, thank you to all who have already taken the time to fill out the survey. Most importantly, if you haven't, every question is optional and no identifying information is required to participate.
Second, I know partners may be hesitant and some of us may be hesitant to even suggest it to our partners. The partners who are active in social media will find the thing sooner or later. And they will likely not be the partners of the participating patients. I'm curious about the "we say, they say" aspects which is why I've included a request for input from at least some partners.
Random thoughts about what I'm doing and the manner in which I've chosen to do this.
My goal is to tell all of our stories, perhaps as one big collective story. The logistics of putting the information together will become clear as the information is shared.
The questions about specifics regarding age, surgery, treatment, disease stage are simply for use as a reference point. I left the rest very open ended. I don't want to lead with questions. If I chose that path, I would only be sharing responses to questions that are in my mind. Kind of defeats the purpose, don't you think?
I'm sure there are issues that are not even on my radar, thus, if I ask direct questions, I know I will miss many important topics of discussion.
Although the survey has been directed toward breast and gynecological cancers, I invite and welcome participation from all. My circle of friends is primarily within the breast, ovarian, cervical, uterine crowd. However, my circle extends to those with other cancers, too. Two of the fiercest advocates I know are involved with the lung cancer and the brain tumor communities.
Another point that is very close to my heart? I am very involved in the metastatic community and there are a number of women who are in the midst of some very rough waters. Sex seems silly and somewhat petty when I look at this from their perspective. I am not turning my back on them and I'm not trying to trivialize or marginalize or exclude them. I did some serious soul searching before I proceeded with this. It wasn't until I came to terms with the fact that there are needs all along the continuum of care that are not being addressed, needs that may be having a terrible negative impact on some of us, that I made the choice to move forward with this project.
Quality of life issues matter to each and every one of us. I still contend that the needs of those who are staring down the barrel of a gun are most important and I will continue to advocate on their behalf. Fiercely. Comparing needs, however, serves no worthwhile purpose. I choose, like I always have, to leave a pecking order out of this. There are unmet needs in too many areas. Issues surrounding sex and intimacy are near the top. Minimizing any issue, sexual or otherwise, because, after all, we should be grateful to be alive is a quick path toward emotional implosion.
Thank you all for the comments on Friday's blog and for the support on twitter and Facebook. I tried to keep up with everyone to properly thank those who have tried to help get the word out. I'm sure I failed at thanking many and if you happen to have been one of those I left out, please know it wasn't intentional.
I'm great at forgetting things. But then, you already knew that, didn't you?
And before I forget, to those who have requested a flyer of some sort to share in support groups or in doctor's offices, yes, it's on my to do list. And I will get that done!
Any other questions, concerns, comments, criticisms? You know I have an open comment door, unless attacks are being directed at someone other than me at which point, they will be deleted. I'm the only one who can be bullied, criticized or name-called in this playground.
Something you feel you would like to say to privately? Send me an email. If you'd like to talk, we can use the phone. Want to really challenge my chemobrain, go ahead and suggest Skype or a google hangout or some other form of video chat. I'll give it my best shot!
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