My web site is devoted to medical and treatment information about this rare cancer. My blog is devoted to sharing what has been the more difficult part of the journey for me, the emotional and spiritual road I've traveled as a rare cancer survivor.

Saturday, January 8, 2011

Facebook

The Appendix Cancer Connection now has a Facebook site. Take a look when you have time!  I am going to use the "Discussion" feature, I've already posted a query there: how many of you with appendix cancer were initially misdiagnosed, and how many, when correctly diagnosed, were referred to HIPEC or EPIC specialists?

I've known of several who were misdiagnosed as colon or ovarian cancer...one woman I know was treated for ovarian cancer for almost 5 years before being correctly diagnosed, she has since passed.

On a personal note, I am excited!  I have been a part of the American Association for Cancer Research's Scientist-Survivor Program as an advocate since 2008.  I was recently asked  to be an advocate mentor!!  It was a position I'd hoped to apply for  a year from now, I didn't know I was eligible for it yet.  It was a privilege to be offered the position.  I will be a mentor for new advocates in Orlando in April of this year at the AACRs annual meeting. 

I remember how overwhelmed I was when I attended my first annual meeting.  The convention center was in a city I'd never been to,was about 4 city blocks long and a few stories high.  17,000 people attended and I had to choose what to attend from a book as thick as a phone book of hundreds of lectures offered.  I missed attending some things I would have benefited from, got lost a lot and made some poor choices in what I did attend.  I was too intimidated to step up to the microphone to ask questions following lectures.  I felt I couldn't approach many of the renowned scientists at the meeting (they are very approachable!).

Four conferences later, I do much better!  Now I will get to help those who come and are overwhelmed  feel less overwhelmed, and will be able to help them make the most of their time there.  I never give out my cell phone number, but will give it to those I am mentoring at the conference.  I so want them to be able to make the most of the opportunity!  And it is a great opportunity!

No comments: