#BCSM Sparklers

The debut of #BCSM last night had its own share of fireworks, sparklers and verbal pyrotechnics that ranged from the poignant to the hilarious.
           What a way to begin.
           There were 55 people who joined in, from all across the country and Canada. We had an almost equal blend of survivors, doctors, nurses, and medical professionals.
           Three things struck me: 


I.  The Scope of People Affected.  The survivors who signed on last night also included the sisters, husbands, daughters, and friends of women with cancer. Their curiosity, willingness to understand and learn moved me enormously.  As a community, we always have to remember that for each of one of us diagnosed there's a circle of loving and caring people.
When asked via @stales T1: What brought all of you here tonight for #BCSM? What do you hope to learn, gain, or share? the tweeting torrent began: 
@KathyKastner:  I come from a family of bc surviors..myself: health blogger and curator, producer of pt ed tv networks. Likely lurking and learning #bcsm
@NateOsit: Nate here, friendly Health IT geek, poking my head in to see patient activism in action! #bcsm 
@MedPedsDoctor: BC does not stop on a holiday. Neither should we. Time to learn from others #bcsm
@NurseFriendly: @PracticalWisdom Breast cancer affects the entire family, not just the woman who has it. Guys can use some pointers on how to help :) #BCSM
@CrGonzalez: Hope to gain BC perspective and insights; also want to learn how to stay cancer-free.
@amyrnbsn:  Serendipity as well, but now I'm here to understand how to best support a pal. #bcsm


Within this group of participants, there was sincere desire to understand current thoughts about prevention, as well, which is something for all of us to think about! That's a topic for a chat on its own.


2.  Incredible Dynamics and Depth of the Breast Cancer Community Itself.
The reality of breast cancer is how much the disease can vary by individual case, from preinvasive tumors to women who have had multiple surgeries, chemotherapy, radiation and hormone therapy. Some have all or part of those elements. Some are in remission. Some are cured and will only know this with 100% certainty when they die of something else. Some have metastatic disease, which is not curable and involves ongoing treatment that the survivor does not "finish." In other words, all breast cancers are not the same. They are hardly equal. Yet the desire to connect, support each other, share information and yes, laugh, knocks me out time and time again. The survivors on our chat ranged from women who are still in treatment, have recently finished to women who were diagnosed at a young age with metastatic illness.


These women these women wanted to educate others as much or more than they hoped to gain.


@ccchronicles: Repeat after me...I must use the hashtag #BCSM
@adamslisa: @BCSMchat I'm here to answer any questions that newly-diagnosed or in-treatment women might have, esp abt BC diag/treatment as a mom
@bugoliath: @stales My sense is the many people have the wrong idea of breast cancer. I hope we can change that.#bcsm
@bugoliath The belief that it's curable, for one thing and not the nightmare it truly is for most women
@ccchroncicles “@bugoliath: The belief for most womem...Roger that BUG #BCSM
@bcsisterhood There needs to be real honesty between patient/family & doctor. Some families don't want the truth. #bcsm
@drsnit No one teaches people HOW to be patients. Getting a diagnoses is just the first part of the process of illness journey #bcsm


These women wanted to educate as much or more than they hoped to gain.


3.  Honest:  Poignant, Up Close and Personal.

These women call it as they see it:. On this question: T2: When women finish treatment they hear this term "new normal" and think, WHAT? What is your norm now? we heard the following:


@BethGainer: @BCSisterhood @bugoliath I'm here because breast cancer has forever altered my life. Want to be with like-minded people. #bcsm
@ccchronicles:  @jodyms with BC mets I have all but forgotten normal. Sure do seem to spend a lot of time dealing with cancer crap. #BCSM
@RockNRealty: New Normal is kind of ever changing, an evolving process, i don't try to seek it anymore, i explore the journey #bcsm
@adamslisa @jodyms When I was diagnosed I didn't know anyone my age who had had it (age 37). I wanted advice abt chemo while raising young kids. #bcsm
@ccchronicles: With BC mets, treatment is never over.....I'm amazed how many don't know this #BCSM
@BethGainer: The image of a mental toll road came to mind, never ending. #bcsm
@adamslisa: acknowledging that it's a NEW normal and not just "back to normal" is a step. sometimes friends, relatives don't get that part #bcs


And toward the end I was struck by: 


@MedPedsDoc No patient goes into office saying "today I will be grumpy/crazy". Docs need to adjust to the patient's POV. It's all about the pt! #bcsm
@adamslisa: patients need to learn how to tune out the noise of fear, keep forging ahead w/ support of others re: fear of recurrence #bcsm
@Rocknrealty: Normal now includes: hugging my kids, not giving a shit about some little stuff, having short hair, crying easier #bcsm

@BethGainer:  Normal for me is double edged. On one side, I appreciate life and have zest for it. On the other, I am haunted. #bcsm

This is just a brief sampling and that was just the first talk.  Thanks, from Alicia Staley and me, for joining us, for sharing your best thoughts with us, and your time.  We'd love to hear from you:) 



Resources:
#BCSM Transcript
On Twitter follow @BCSMChat: The intersection of breast cancer and all things social media.
Watch for: http://bcsm.info