Tuesday, July 5, 2011

#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:) 

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


CancerCultureChronicles said...

Well done! Great new forum and looking forward to future chats. As a patient, I was really excited by the number of healthcare professionals who "attended". That's a really invaluable opportunity for me and I really appreciated their presence.

carmen2u said...

First, I am blown away at the generosity of the breast cancer survivors and patients who just "told it like it is". There was real sooul-baring and it was touching. This didn't seem like the first chat on #BCSM. There were real honest exchanges and I felt privileged to be there. This is a great forum and look forward to the next chat.

Jody said...

Thank you both:)

When I read the transcript today I was blown away too - with the wealth of ideas, the honesty, generosity and willingness to listen. There was a lot to be learned about helping each other through cancer last night.

What an honor.

Stacey said...

Thanks again, Jody, for putting this together. I'm in awe of the people who joined in last night. So open, honest and passionate! I find it inspiring.

Jody said...

Stacy, I thought it was inspiring, too! Even @stales ran out of exclamation points:)

Suzzann Cummings said...

This is one heck of an health forum that's happening! Loved reading through the transcript and "feeling" everyones honesty and sincerity. Looking forward to next weeks chat!

Beth L. Gainer said...


Thank you, thank you, thank you for a much-needed forum. I loved hearing everyone's point of view, and like Anna, I was excited to see a great number of medical professionals participating.

I've booked my Monday nights. Sometimes I have to teach on these evenings, but whenever I don't, I'll be part of the forum.

Jody said...

Suzzann, Beth -

You both added so much to the conversation. I'm privileged to know you both. Let me know what you'd like to see on the topics, list, too!

Jody said...

Suzzann, Beth -

You both added so much to the conversation. I'm privileged to know you both. Let me know what you'd like to see on the topics, list, too!

The Accidental Amazon said...

Great job, Jody & Stales. Sorry I missed the inaugural chat but will be joining future ones, believe me!

Anonymous said...

Thanks for this round up Jody - as here in the UK I was sleeping when this happened! Great read and so much resonates with me too. Would love to join you... I love this:
"the desire to connect, support each other, share information and yes, laugh, knocks me out time and time again."
Yup, me too.
Thanks again, Sarah

BreastCancerSisterhood.com said...

So great! So great! Just opening a dialog that includes patients & medical professionals is huge. We have much to learn about one another and from one another in a forum other than our doctor's appointments. I emailed a couple of very SM savvy breast oncologist & reconstruction docs and am hoping they'll be able to join us in the future.

Every other Monday night, I have a Bible study group in San Antonio, but on those nights I'm home, you better bet I'll be there.

Thanks again Jody & Alicia for putting this together.


Nancy's Point said...

Thanks for the roundup, Jody, and also thanks to Alicia for being part of this. What a great forum. There is nothing like sharing viewpoints and experiences. I have to get involved with this soon.

Cheryl said...

Congratulations on, what appears to an observer, as having been a very successful forum. I can see I am going to have to do something more about becoming involved. Well done Jody.

Cheryl said...
This comment has been removed by a blog administrator.
dahlan epsoner said...

That is very helpful for people on the internet. Keep up the good work!