Appendix Cancer Connection

What you need to know

by | Sep 4, 2020 | Uncategorized | 0 comments

Wanted to post this.   I have a new patient who attended our Zoom meeting and read my website.  She compiled this list of things she learned.  I liked her list a lot!

These are some key messages running through the materials on your website, and they surfaced quite naturally in the Zoom meeting. For example…

  1.  the importance of self-advocacy – practitioners can’t be experts in all rare diseases and probably won’t have time to research yours, and it’s your life in the balance
  2.  appendix cancer is not just another form of colon cancer – it requires different treatment
  3.  the need to get advice from a recognised expert in appendix cancer as soon possible – before starting a treatment plan
  4.  that extent of tumours does not mean that your cancer is untreatable
  5.  cytoreduction and HIPEC is the treatment of choice, but you need someone who is an expert in cytoreduction to get the best possible outcome
  6.  some specialists are much better than others, it’s ok (and maybe even vital) to shop around,and you may need to travel to access the care you need.
  7.  if specialist expertise isn’t accessible to you, perhaps due to Covid travel restrictions, you may need to engage, educate, and connect your physicians to expert advice.

Virtual Support Group

by | Aug 29, 2020 | Uncategorized | 0 comments

Our virtual support group met online today and it was GREAT!   There were 6 of us there and we were international!  One from New Zealand and one from Hungary, the rest from the USA.  It was so good to be able to see and talk to everyone, even though it would have been nicer if we could have all met for lunch.  Never know, maybe someday!

We have decided to meet once a month.   It will continue to be Saturdays at 12 noon Central Time as that time worked even for the international attendees.

We are meeting on Zoom and I will send out invitations a week before the next meeting.  To request an invitation, click “Video Meetings” on the home page (www.appendix-cancer.org) and sign up to receive invitations to the support group.  Would love to see you there!

 

 

Cure Magazine

by | Aug 27, 2020 | Uncategorized | 1 comment

Hi all!

For all who asked to be invited to the video meeting, our virtual support group, I sent out invitations.  We will meet this Saturday at noon!  It will be an international group, one from Hungary and one from New Zealand!   I sent the invitation to about 13 who requested it.  I’m looking forward to finally meeting some of you!   I’ll post later to give you an update on what transpires.  I think it will be a very good thing for all of us.

I got a Zoom account for the non-profit  as I am a professor who is teaching my classes on Zoom since the Covid crisis, so am very familiar with it.  What I like about my virtual classroom is we all keep our mute off and our video cameras on, so we can see each other and have conversations.  It’s the next best thing to being in class together!   I’ve even used Zoom for family meetings.  I am also a CASA (volunteer Court Appointed Special Advocate for abused and neglected children) and I will be participating in court proceedings via Zoom or a similar program.   I’m doing my faculty meetings for work via Zoom.  I’ve always disliked being videotaped, but I’m getting used to it.  I have to remember now when I turn on my computer if I am going to be on camera!  The other day I opened my camera in a meeting and stopped….had I brushed my hair???  Brave new world….

Good news, Cure Magazine just did an article on appendix cancer!  It is a very good article.  I was interviewed and the non-profit was mentioned.  There is a picture of me in the article that is up to date.  I need to replace my Facebook photo with this one, I’ll instantly age on Facebook :-).

This is a link to the article (just updated the link!):

file:///C:/Users/Carolyn/Downloads/CURE-Rare-Cancers-2020-Appendix-Feature.pdf

Hope you are doing well!

Carolyn