Sunday, April 05, 2015

If you or a loved one is newly diagnosed with Adenoid Cystic Carcinoma...

Workmen looking at a car-sized hole
that appeared in a Sears parking lot
I am glad that you found this blog, but very sorry that we have to meet under these conditions. There are links on the right side of the blog for more information on ACC, (also known by the acronym AdCC). If you are new to the topic and still under treatment, searching on the internet may not be the best action you can take at this time. You and your loved ones/support network need to concentrate on healing and staying strong. Listen closely to your professional care team and work towards healing. Increase your health literacy--your understanding of the instructions and information that they give you.  Please contact your local library (it could be a public or medical library) that serves consumer health information, and have them do information searches for you so you will have a focused collection of information to take to your health care professionals the next time you discuss your treatment options and long term outcome expectations. You can locate such a library in your area by going to this link at MedlinePlus:http://www.nlm.nih.gov/medlineplus/libraries.html

Since this is a rare condition, finding out others' unique experiences (including mine!) at initial diagnosis may not be the best method for you to plot your own treatment path. In other words, you shouldn't be looking up your own or your loved one's conditions on the internet at this time. Really. I used our medical library's Consumer Health Information Resource Service (CHIRS), and the librarians gave me the health information I needed at the time I needed it, which I carried to my health professionals for interpretation. This saved me from dwelling on individuals' stories, enabling me to concentrate on my own path without any distractions. Of course, once I was out of active treatment, you can bet that I traveled the web and added my voice to encourage others on this path, and still do so.

If you happen to be facing head/neck radiation, some of my coping strategies are recorded at the beginning of this blog - click back to the Fall of 2006 and you will find the posts. Your health professional team may have other suggestions - please listen to them, as their goal is for you to heal in the best possible way.


If you are a cancer survivor/fighter/wearer (I still haven't found a better term for those of us on the other side of initial treatment), I salute you, and look forward to learning from you.


No matter who you are or how you found this blog, I hope some of the information I have recorded here is useful to you in some fashion. And if you want to share, please let me know your story - I will share it with others that read this blog. 


You may notice that the topics lately have been about me living life in my new normal, post-cancer. I trust that you too will be back to living life in your new normal, after healing. 

1 comment:

Anonymous said...

Hey Cheeky. Been thinking of you lately and noticing my star, still hanging on my Stn Mtn bedroom wall. Drop me an e-mail.

 
Who links to my website?