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    Posted: Feb 08 2012 at 10:41am
Dear TNBC Family,

I titled the thread the way I did because I know some here do not want to read about hospice so it was an effort to alert people to the fact that it is in a Hospice forum and is partially about Hospice care, a subject that some may not want to read so please don’t. I mean that in a kind and gentle word. Sometimes the printed word leaves a lot to be desired.

Some months ago I went to an excellent palliative care conference at MD Anderson Cancer Center in Houston and have become friendly with one of the speakers who suggested I look into an organization called ADEC (Association for Death Education and Counseling)-The Thanatology Association.


I received this invitation this morning and wanted to pass it along to those of you who are interested (please see below).

I am also going to the ADEC workshops and conference in Atlanta the end of March.


I know absolutely no one at the conference except my new friend who is presenting. I am having lunch with him one day but I am free for dinners and would love to see any of you in the Atlanta area.


Register today
 for ADEC's upcoming webinar:


Palliative and Grief Care Around the World

Wednesday, February 15, 2012
Noon – 1:30 p.m. CST


With Stephen R. Connor, PhD, 
senior executive, Worldwide Palliative Care Alliance


  • Learn about the status of palliative care development globally and the barriers to effective pain management delivery.
  • Examine variations both in how people grieve and how caregivers can respond, with examples from various cultures from Asia, Africa and Latin America.
  • Gain an increased understanding of the roles culture and religion play in palliative care delivery, in the expression of grief, and in how grief professionals can support the bereaved.

Read more about the session.




About your instructor
Stephen R. Connor, PhD, is senior executive of the London-based Worldwide Palliative Care Alliance (WPCA). Dr. Connor has worked continuously in the hospice/palliative care movement since 1976, and is a researcher and psychotherapist, licensed as a clinical psychologist in two U.S. states. He served on the Board of ADEC as treasurer from 2005–2011. He has published over 60 peer-reviewed journal articles, reviews and book chapters on issues related to palliative care for patients and their families and is the author of Hospice: Practice, Pitfalls and Promise(1998), and Hospice and Palliative Care: The Essential Guide (2009).


Earn 1.5 continuing education credits for completing this webinar. 
Member price $59  Nonmember price $79

Your registration fee includes one telephone connection, one set of materials and one evaluation for continuing education credits. An unlimited number of people can listen in on the webinar with you and purchase additional continuing education credits for $25 each.



Register online now!
Use your promo code 0212TE to help ADEC assess the effectiveness of this promotional effort. 

Questions? Contact ADEC
I am a BRCA1+ grandson, son and father of women affected by breast/oc-my daughter inherited mutation from me, and at 36, was dx 2004 TNBC I am a volunteer patient advocate with SAGE Patient Advocates
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Post Options Post Options   Thanks (0) Thanks(0)   Quote SagePatientAdvocates Quote  Post ReplyReply Direct Link To This Post Posted: Mar 26 2012 at 10:21pm
Dear all,

I am in Atlanta preparing for the Pre-Conference Institute which consists, for me, of a two day seminar
Introduction to Thanatology by William G. Hoy, DMin, FT followed by the conference, itself which runs for another 3 days.

I must confess I am a bit nervous. I think there are about 500-600 attendees and I only know one person. But that person, Ken Doka, told me that the folks in this organization are really nice.

With all the incredible, incredible losses we have all experienced on this site, some of which I experienced very up close, deep scars developed and, at the same time, some wounds that are still open.

I am hopeful that this conference will help me be a better advocate and also enable me to cope a bit better. Feeling a bit fragile, at moment. 

Don’t know if I will post in any sort of detail regarding this experience but if anyone would like to talk in the months ahead on this topic please send me a PM. I have made a commitment to myself to become more knowledgeable about dying...from many varying perpsectives. Hopefully, I will meet professionals who can help our community if needed. Hospice experts, bereavement counselors are several resources that come to mind.

This is a start of a journey I never anticipated taking but I feel it is imperative that I do...especially for the families I serve and my own personal health.

warmly,

Steve
I am a BRCA1+ grandson, son and father of women affected by breast/oc-my daughter inherited mutation from me, and at 36, was dx 2004 TNBC I am a volunteer patient advocate with SAGE Patient Advocates
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Natalie Quote  Post ReplyReply Direct Link To This Post Posted: Mar 26 2012 at 10:56pm
Steve,
 
I am sorry that you are nervous, you will soon realize these super educated masters in all different aspects of there chosen proffesion really are just regular people fumbling around trying to figure things out and hopefully make things better.
 
I am also sure that you will take away exactly what you need, and are meant to. Anything you bring back for our community will only be to our benefit. Sometimes the most fulfilling journeys are the ones that we didn't plan for nor anticipate.
Thank you for your passion Ying Yang
 
Natalie
TNBC stage1 size 1.8, grade3 no nodes 4/11 Lumpectomy 5/11 4cycles DD A/C 4cycles DD Taxol. Double Mastectomy 12/11 BRCA all neg
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Debris Quote  Post ReplyReply Direct Link To This Post Posted: Mar 27 2012 at 1:54am
Steve, hope the seminar works out, and gives you what you are looking for, in the many perspectives of dying. I know that whatever your take aways are, you will always be our Go To patient advocate in so many ways, and maybe now, in the one, too.

(Don't know, because of my changed infusion date, whether we can meet up, seeing as you are in Atlanta (so close, and yet so far). I know DH is looking to see what can be done. If it doesn't work out this time, I'm sure there will be another opportunity.)



Deborah.
4/12 Xeloda/Tykerb
2 Carboplatin
12/11 Dx IA
9 Gemzar/Taxotere Dx IBC:FEC
5 Ixempra/Sprycel
2 25 Rad
10/10 BRCA1-/2suv
9 NED
6 Stg4 Grd3 many nodes no Sx/Rad. Taxol/Avastin
06/08 Dx DCIS 0/SN Rads/AIs
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Post Options Post Options   Thanks (0) Thanks(0)   Quote SagePatientAdvocates Quote  Post ReplyReply Direct Link To This Post Posted: Mar 27 2012 at 7:02am
Dear Deborah,

Thanks for your comments. I am afraid I had just fallen asleep when you wrote this last night, otherwise I would have responded.

well since you wrote about possibly meeting, I will respond on the board.

I just sent your DH an email and a text message with a number of suggestions about getting together. Let’s please try to make it happen and I am willing to come to you. I feel it is really important that we meet based on what you wrote on the 'Team Debris' thread.

We can continue this dialogue privately but in case you go to the board again I wanted you to see this.

I know you have a busy day, today, and I wish you strength.

prayers continue.

with my love,

Steve
I am a BRCA1+ grandson, son and father of women affected by breast/oc-my daughter inherited mutation from me, and at 36, was dx 2004 TNBC I am a volunteer patient advocate with SAGE Patient Advocates
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Charlene Quote  Post ReplyReply Direct Link To This Post Posted: Mar 28 2012 at 7:30am
Steve,
Once again, it was a pleasure and honor to get to meet you during your visit to Atlanta.  This site is truly blessed to have you always available to help in so many different ways.  Your compassion for those dealing with this disease is inspiring.  I wish you strength for the rest of the week and into the future.  You will always be in my prayers. 
Charlene
DX 3/10 @59 ILC/TNBC
Stage 1, Grade 2, Multifocal; Lumpectomy/re-excision
SNB 0/4 nodes, BRCA-; Taxotere/Cytoxan X4, 30 rads
3/14:NED
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Debris Quote  Post ReplyReply Direct Link To This Post Posted: Mar 30 2012 at 5:30am
Hello, Charlene. Sorry we have not been able to meet yet. As I said in my post to Steve, so near and yet so far. It was my hope too, that I would be able to meet with Laura. Perhaps this will still happen.

Best wishes,

Deborah.
4/12 Xeloda/Tykerb
2 Carboplatin
12/11 Dx IA
9 Gemzar/Taxotere Dx IBC:FEC
5 Ixempra/Sprycel
2 25 Rad
10/10 BRCA1-/2suv
9 NED
6 Stg4 Grd3 many nodes no Sx/Rad. Taxol/Avastin
06/08 Dx DCIS 0/SN Rads/AIs
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Charlene Quote  Post ReplyReply Direct Link To This Post Posted: Mar 30 2012 at 7:39am
Deborah,
I know that getting together was something Laura had wanted to do at one point.  I'm also sorry that it hasn't happened yet.  You are an inspiration to everyone here and I have been praying daily for your complete recovery.
All the best,
Charlene
DX 3/10 @59 ILC/TNBC
Stage 1, Grade 2, Multifocal; Lumpectomy/re-excision
SNB 0/4 nodes, BRCA-; Taxotere/Cytoxan X4, 30 rads
3/14:NED
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