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Nov 28, 2012

Jumbled thoughts, emotions, and everything

My trip to London last month was amazing. How it came about, how it went off and just the general awesomeness of being invited some place that incredible... I am still in awe of the entire process.  I am grateful that four years of blogging about my experience with breast cancer has made me a voice in this community. I am grateful that when people were searching for voices to share in this London experience, they found me. And I am more grateful that I was healthy enough to make the trip and enjoy one of the few tangible perks that blogging has offered me. (and what a perk it was)

The good people at Siemen's did a fantastic job with their Turn your city pink campaign for global awareness of breast cancer. While I know that breast cancer affects women and men around the world... the magnitude of the impact of this disease hit me really hard while I was overseas. (I can't tell you how giddy it makes me to be able to say that) Sitting at an event with bloggers and survivors from countries around the globe forced me to really accept that a whole heck of a lot of people get diagnosed with this disease.

This thing is HUGE y'all. I mean, really really big.

By the end of the trip, I had become perturbed. A little angry, a lot sad and mostly just really very confused. Very, very confused. Now, I don't have a good poker face. I cannot hide what I'm thinking or feeling at all. Its one of those things that keeps me from being a great liar and it is also one of those things about me that makes people instantly responsive to me. Sometimes that is a good thing and other times... its a bit of a pain because I don't intend to bother people with all of my crazy thoughts. But usually since its right on my face, they want to know what's on my mind.

Because I was in deep thoughts and trying to identify what was going on with me internally, my face just showed angst. Or anger. And it concerned my travelling partners. I felt badly trying to articulate my feelings because I just couldn't. I believe that I upset them unnecessarily because the emotions were just under my skin but I just couldn't reach them. Even now, its been weeks and that feeling hasn't left me. I have tried several times to articulate my thoughts and concerns and only recently... (like last night) did it start to all come together in my mind about what was bothering me.

I think that something is missing in this breast cancer movement. We're focused on research. That's good. We're focused on awareness. That's good. We're focused on preventive measures. That's okay -- we need more research and more work in this area so that we can be sure what really works and what is just nice to do. We're focused on finding a cure. That's fantastic but we really need some progress in this area. But one area that I think we've missed, overlooked... just forgotten about... is survivors.

What about us? What about those of us who are behind the pink ribbons?

I have hated that thought that your life just picks back up where you left it after you've had breast cancer. I hated it because even though that's the thought that I held on to throughout my treatment, it just wasn't true. My life wasn't the same afterwards. It will never be. It is good, but not the same.

I've also sort of despised that notion that all survivors after breast cancer suddenly become super-human and unafraid and simply able to take the entire world by storm. I guess that it happens for some. But for others... it takes time to get there, if we get there at all. Especially if you weren't that kind of person before breast cancer. It all feels like a lot of pressure to be some sort of perfect new hero for the world afterwards.

I don't always feel like that. In fact, I thought that I burned that damn super-woman cape before I was diagnosed with breast cancer in the first place. *sigh*

I know that people are aware that breast cancer patients and survivors are around the other eleven months of the year... but I wonder... I just wonder. Do you really think about us after our "month" is over?

The question that I keep pondering is about charity. When we give money for fundraisers or in the name of a loved one or a friend, what is our true motivation? Is it enough to raise money for research (and can anyone explain why it is the general public's "burden" to fund cancer research)? What about actual help -- real charity so to speak -- for those who are struggling with the aftermath of the disease? Having an illness like this is a bit of a burden -- emotionally, financially, and physically. While I do think that the way that we currently address the disease -- research, prevention, awareness -- is good. I think that the millions of women and men around the globe who are left to pull together the pieces of their lives after cancer need some sort of something also. What that is specifically... I don't know. But let's rap about it.

I would like to start regular chats online about what needs exist and ways that we can help each other and receive help from others. I have to find a couple of people willing to help me with this behind the scenes. But let me know in the comments if you'd be interested in chatting about helping survivors in tangible ways. I really need your insight and feedback.

#I am the pink ribbon.

This is the start of a movement.


10 comments:

  1. I think focus on ‘life after treatment’ is only just starting to grab attention. Our own organization, Facing Cancer Together, was sparked by the realization that emotional support is needed, and life after cancer IS different than life before. Many of our bloggers (myself included) are part treatment and on the other side like yourself. We are challenged with body image, fears, depression, life continuing, and all the unexpected twists you never plan ahead. This part of the journey needs to be discussed. Healing goes on a long, long time after treatment – and the more that becomes okay (and supported), the better it will be for everyone. ~Catherine

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    1. Thank you for sharing about your organization. I will definitely start following you guys. Getting cancer (breast cancer) at a relatively young age is tough. But after treatment? Living with the weight of this is crazy.

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  2. you know this is my soap box issue.. so count me in!

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    1. :) I have thought about our conversations many times. Thank you.

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  3. Great post! I always say I don't need anyone's admiration for surviving cancer, but I could use some help with the shit that is ours forevermore--discrimination in work issues, difficulty getting adequate follow-up care, challenges with reconstruction, financial issues, health insurance linked to employment paranoia and a million other concerns, especially when you get cancer young.

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  4. Ditto to lopsided blogger's comment. Sounds like you had a great trip. I'm glad.

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  5. Thank you for this post. I'm with all of you. Survivorship needs so much more attention and we need a broad range of programming to support people with different personalities, likes, fears, wishes, dreams, and aspirations. I would love to keep in touch about survivorship and I'm a BIG fan of talking global cancer, overseas trips, and working collaboratively. So happy to find your through the weekly round up today!

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  6. Thanks Terri. I would love to work globally on this survivor movement. I guess I already am considering that I am in the US and Marie (JBBC) is in Ireland. We're just going to get the ball started and try to figure out where survivors fit into this whole issue.

    I just feel like this entire pink ribbon movement has been established on "our" struggle with this disease but beyond saying "Hey, we admire you"... its like we don't exist. Enough with that.

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