Found this group on Facebook - posting their Facebook page with permission:
https://www.facebook.com/groups/430981556954065/?fref=ts
You will need to ask to join - it is a closed group.
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Who links to my website?
This is my place to relate my experiences with cancer treatment, as well as share resources that may be helpful to fellow oral, head, and neck cancer survivors. I was diagnosed with adenoid cystic carcinoma of the left parotid on June 30, 2006. My goal is to continue enjoying the Nebraska Good Life. I call this blog the "Cheeky Librarian", since the cancer was discovered in my cheek, I am a librarian, and many that know me say I fit the slang use of the word 'cheeky'.
The views expressed here are mine alone and do not reflect the opinion of my employer or your Internet supplier.
If you are reading this blog for the first time
Click on 2006 in the Blog Archive below to read about my initial cancer treatment issues - radiation side effects, dietary, fatigue - and how I dealt with them. The coping methods and information sources are shared in the hopes they will be useful to others that are following in the cancer treatment pathways.
Sources of consumer health information on cancer
Sources of research information and clnical trials for Adenoid Cystic Carcinoma
Searching Google for Adenoid Cystic Carcinoma information
ACC Organizations and Foundations
- Rare Cancer Alliance - connect with others with ACC on the Private Forum
- Adenoid Cystic Carcinoma Organization International - connect with others with ACC on the Email Information Group
- Adenoid Cystic Carcinoma Organization International (second site for this organization)
- Adenoid Cystic Carcinoma Research Foundation [ACCRF]- donate to support research on this rare cancer
- Live Like Andi Foundation - funds raised go to ACCRF
- U. of Virginia [UVCCC] ACC Tumor Registry
- Attack ACC organization - funds raised go to UVCCC
- Attack ACC Facebook page
- Support for People with Oral and Head and Neck Cancer [SPOHNC]
- Oral Cancer Foundation
Cancer bloggers - personal accounts and good information. (Some blogs have lapsed.)
- A Rare Cancer Journey
- Glimpses Within
- Views From the Passenger Seat
- There Will Be Grace
- Cancer's Just a word... - an ACC blog
- Shalil - an ACC blog
- Allegories - blog about ACC by Gerald B.
- The Assertive Cancer Patient (NEW URL as of 10/10/10)
- Dee's Updates
- Being Cancer - link to cancer blog list
- My life - a myriad of colours
- Cyndi's A Day in a Life With Life
- Kisses for Amy
- Korean Cuisine
- Krysti.net - an ACC blog
- Molly's Musings/Brawley's Boobs--WHATEVER!
- Adenoid Cystic Carcinoma, by Christine
- Libby's Page - an online diary and update
- Life Changing Cancer
- My Cancer by Leroy Sievers at NPR
- Wendy S. Harpham, MD-Leading the way to Healthy Survivorship
3 comments:
We welcome any Australian Warriors that have been diagnosed with ACC. While our numbers are small the support is unbelievable. Please request to join and send us a message so that we can ensure our group is the most appropriate for you. Carers and Family Members are also welcome where Warriors are unable to join themselves.
- Desiree Fraser (Administrator)
Hi Desiree,
I am interested in joining your group, as I presently have ACC and would like some support. I am also interested in finding out about possible cures.
Thank you.
Marie Massey
Evening Marie,
I hope you come back on here and find this comment. Do you have facebook? If so please try to look up Adenoid Cystic Carcinoma - Australian Support and request to become a member. Alternatively, you can contact me through desiree@withoutaribbon.org.
Hope to hear from you soon.
Regards
Desiree Fraser (Desy)
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