Friday, June 20, 2014

bloggers who live with mets and write about that and other things

The other day, Katherine O'Brien shared a Pinterest board called "Metastatic Breast Cancer: Stage 4 People and their Stories." I'm not on Pinterest but I clicked through and was floored by all the beautiful and interesting people from so many different walks of life. So many are so young. So many of little kids, as I did when I was first diagnosed.

It got me thinking how much connections with others has mattered to me over the last 8 years. I looked back at some of my own lists. I looked at the blogrolls of others. And I realized that far too many of these amazing women are no longer with us.


Today's post is not about the sadness and anger I feel when I think about how many wonderful women have been lost to metastatic breast cancer and how little is actually being done to address our needs. 


Today's post is about our voices. About making a new list of women who are living with metastatic breast cancer and writing about that - and so many other things.


In no particular order:


Katherine O'Brien  I Hate Breast Cancer 

@ihatebreastcanc

Catherine Brunelle Bumpyboobs 

@Bumpyboobs

Anna Craig 

@Anna89266443

Lisa Bonchek Adams 

@AdamsLisa

The Sarcastic Boob 

@sarcasticboob

Ann Silberman Breast Cancer? But Doctor...I hate pink! 

@ButDocIHatePink

Jen at Booby and the Beast 

@JCampisano

Carolyn Frayn Art of Breast Cancer 

@CarolynFrayn

Lulu Change Living Life Furiously 

@LulyChange14

Uppity Cancer Patient 

@UppityCancerP

Telling Knots 

@knottellin

Kate Kate Has Cancer

@KateHasCancer

Vicki, Inspiring Breast Metatastatic Breast Cancer Advocacy

@IMBCadvocacy

Susan Rahn, StickIt2Stage4

@StickIt2Stage4

Lori Marx-Rubiner regrounding: of chemo, cancer and facing life head-on
@regrounding

Sarah Illingworth 
@Illingpig

Victory Over BC

@MetaThriving

Phyllis

@Groz_P

Jude Callirgos
@JudeCallirgos

FUBC

@FUBreastCancer

Chantelle Chantelle's blog

Nicole Jasien Walk By Faith Not Sight
@nicolejasien

Honorary club member: 


Nancy Stordahl at Nancy's Point

@NancysPoint

Nancy doesn't have metastatic breast cancer and I hope she never joins us but she supported her mother through mets, has been through treatment herself and is a "staunch advocate" for metastatic breast cancer.


The organizations that don't ignore us:


Metastatic Breast Cancer Network

@MBCNbuzz

Metavivor

@metavivor

Canadian Breast Cancer Network

@cbcn

ReThink Breast Cancer

@ReThinkTweet

This isn't the end. For our stories or for this list. I welcome additions from Twitter or the blogosphere. Just let me know.


Last winter, there was a bit of shitstorm about whether those of us living with mets had the right to be talking about it publicly. It was aimed at Lisa Bonchek Adams but lots of us took it very personally. For me, it brought a re-newed commitment to keep telling all of my story, including the parts about cancer, as honestly and openly as I can (as Lisa so consistently does, with grace, patience and clarity).


I struggled with what to call this post. I personally hate being called a "cancer blogger" because that's not all that I am. I don't even write about cancer in every post. I settled for the rather unwieldy title, above, because I think that's who we are: women, all different from each other, with interesting lives, who write about living with mets and whatever else is of interest to them. I hope to write more about each of them, in the next few months.








11 comments:

Jim's Girl said...

Thank you for including me, Laurie. I am proud to be I part of this community of bloggers who live with mets and write about that and other things.

~Kate, of Kate Has Cancer

laurie said...

I wish we weren't all part of this club but I am very glad to know you.

writewrds said...

I'm not part of the club. But.
I'm grateful for your voice and your spirit. : )

Nancy's Point said...

Hi Laurie,
Thanks for putting this list together. I am glad the voices of those living with mets are being heard. I realize there is still so much work to be done, but the voices are getting louder and more people are paying attention, at least I hope so. I am honored to be included on your list. Thank you. Keep on writing.

Carolyn Frayn said...

Thank you for adding my voice to your list, Laurie.

Nicole Jasien said...

I'd love to be included :) @nicolejasien on twitter. Blog: www.walkbyfaithnotsight.com

David Douglas said...

Wishing the best for all! Prayers go out to cure this awful not descriminating disease. http://gfwd.at/1iHSjW6

Chantelle said...

Thanks for your post! I've had breast cancer bone mets since 2006 (currently stable) and have been blogging about my life since 2007 over at Chantelle's blog. I find it comforting to read about people in similar situations... Especially when they're Canadian like me!

Debra, Musings of a Cancer Research Advocate said...

Laurie, thank you for creating and sharing this important list. As one who was treated for breast cancer, I'm an active cancer research advocate as well as a blogger, and I will definitely be sharing this list with my friends, fellow advocates, and my family-- including my wonderful first cousin, who was just diagnosed with HER2+ metastatic breast cancer last month. My most recent blog post was a very difficult one for me to write, because it discusses the moment when I learned of her diagnosis--when I was sitting in the audience at the American Society of Clinical Oncology (ASCO) Annual Meeting during a session on, of all topics, "50 years of progress in the treatment of breast cancer." It was the first time I ever cried literally surrounded by 100s of people. But I did what I could to get myself together, immediately contacted my cousin, and then started madly sending out FB messages to dear friends who also have HER2+ metastatic breast cancer, asking if they would be able to talk with my cousin during this very frightening time. They immediately agreed and provided her with crucial support, since they understood what she was experiencing in a way that, no matter how much I love my cousin, I wouldn't be able to since my cancer was not metastatic. There is still far too much misunderstanding about metastatic breast cancer, but blogs like yours and those you've listed here are truly making a difference both in helping to change that and providing information, support, and community for those living with metastatic breast cancer. Thank you again.

laurie said...

Nicole and Chantelle, I will add you. Debra, thanks so much for sharing your story. I hope that treatment is going well for your cousin and that she has many more happy years.

laurie said...

Nicole and Chantelle, I will add you. Debra, thanks so much for sharing your story. I hope that treatment is going well for your cousin and that she has many more happy years.