Last November I was on the planning committee and a speaker for Life Beyond Cancer's annual survivorship retreat at Lakeway Resort on Lake Travis, outside of Austin.
This conference is exemplary for lots of reasons: it's not just for "the breasts," but for women with any kind of cancer, at any stage. Women with metastatic disease initiated some of the best discussions we had: at the end of the day, what really matters? How are you going to spend the time you have on this planet? How will knowing each other empower you in the months to come?
It's ironic to me. Although articles about "fear of recurrence" are ubiquitous, its silent and subsequent corrolary - the avoidance of women whose cancer has recurred - gets short changed.
That's why tonight on #BCSM we're going to talk about that. This is not about symptoms of metastatic disease or its treatment. It's about the experience of some 150,000 women with breast cancer, whose "new normal" can change with every CT scan.
It is my hope that this discussion can help distill fear and deepen your compassion. Women with metastatic disease do not need my fear, or yours. They don't need false hope or half truths. But your friendship and support? There's a world in those two words.
Let's see what we can do.
Tonight on #BCSM: "Bridging the Gap - Meeting the Needs of Women with Metastatic Disease" at 9 PM ET / 8 CT
Resources: For two exemplary voices in the struggles of women with metastatic disease please follow @ccchronicles and @whymommy. Powerful voices, beautiful women.
From The New York Times: A Pink Ribbon Race, Years Long. ; Metastatic Breast Cancer Network,
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| From: The New York Times. |
It's ironic to me. Although articles about "fear of recurrence" are ubiquitous, its silent and subsequent corrolary - the avoidance of women whose cancer has recurred - gets short changed.
That's why tonight on #BCSM we're going to talk about that. This is not about symptoms of metastatic disease or its treatment. It's about the experience of some 150,000 women with breast cancer, whose "new normal" can change with every CT scan.
It is my hope that this discussion can help distill fear and deepen your compassion. Women with metastatic disease do not need my fear, or yours. They don't need false hope or half truths. But your friendship and support? There's a world in those two words.
Let's see what we can do.
# # #
Tonight on #BCSM: "Bridging the Gap - Meeting the Needs of Women with Metastatic Disease" at 9 PM ET / 8 CT
Resources: For two exemplary voices in the struggles of women with metastatic disease please follow @ccchronicles and @whymommy. Powerful voices, beautiful women.
From The New York Times: A Pink Ribbon Race, Years Long. ; Metastatic Breast Cancer Network,
4 comments:
Amazed again by all you know and all you do! Have a great session, I'm sure you'll help many more women.
Jody this topic is close to my heart. I feel 'locked in' to a life of isolation knowing that I am counting weeks and months rather than years.
Jody, great posting, and I was moved by the NY Times article.
Last night's chat was very lively, and it was great to hear the diverse thoughts. The one thing I wish we heard more of (and you did address it) was from the people with mets.
Could we have another chat on this topic, this time with only the people with mets doing all the chatting? Is it feasible? I just feel that the people with mets didn't get their fair say, and I would just be happy to watch the tweets go and listen.
Thank you for being such a great moderator!!
Thanks for your comments, friends.
Cheryl,
I hope you were able to join the Tweetchat. There were a number of other women who can attest to the isolation you feel. The same thing was pointed out in The New York Times piece...so, so difficult.
And Beth, yes! Great idea. I wondered about doing the same. Given how approachable the women are in the community I think something like a Q&A with them during OCTOBER would be awesome.
I so appreciate your feedback.
Thanks to all,
Jody
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