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Wednesday, April 06, 2011

If you or a loved one is newly diagnosed with adenoid cystic carcinoma

I am glad that you found this blog, but so 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, since you need to concentrate on getting healed up and staying strong. Increasing your health literacy is very important.  Please contact your local library (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:

Since this is a rare condition, finding out others' unique experiences 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 Consumer Health Information Resource Service (CHIRS), and the librarians gave me the health information I needed at the time I needed it, and saved me from dwelling on individuals' stories, enabling me to concentrate on my own path without distraction. 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.
If you are a cancer survivor (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.


Anonymous said...

Hi Cheeky,

June 14th will be my 10 year mark.

I love how you wrote, "If you are a cancer survivor (I still haven't found a better term for those of us on the other side of initial treatment)."

We need to come up with a term for us. When people find out I had cancer (even doctors) they ask how long ago and I tell them. Their response is always the same: Great, good for you, looks like you beat it.

These responses make me want to scream. The first time I saw one dotor she asked me what ACC was. I told her. Her response was, "That was unlucky." I just looked at her and said yes. When I asked if she was familar with it she said she had never heard of it. When I told her it had a reverse survior rate she looked confused so I explained it to her. I can only imagine she will never again tell someone who has had cancer how unlucky he/she was.

I guess I should stop now because I don't want anyone who finds your blog because of this posting to lose heart. I'm ten years in and everyday I get to see my boys faces.


BTW: (new to this) is for the blogs I do with the wives of diabetics not AdCC.

Teresa Hartman said...

Thank you so much for posting to my blog. 10 years - wow. I am heading for my 5th since diagnosis this summer. I have started using "ACC wearer", like we have a coat or something that we pack around with us (and it if it can be represented by an article of clothing, may that article be the most sumptuous blingy thing ever.) I have received emails from people that had originally been told they were "cancer free" after their initial treatment, only to be blindsided by the cancer coming back somewhere else. I too don't want folks to lose heart - the goal and mission of this blog is entirely the opposite to that. But having a realistic grasp on what the future could be is part of the health literacy surrounding this particular rare cancer.
Thank you for all you do, and for your other supportive role. And keep on keeping on, enjoying those boys' sweet faces!

Anonymous said...

Hello again Cheeky,

I hope you don't mind my calling you this...I love the handle.

I was excited to see you had stop by my blog and are following. My blog is part of a support group of wives with diabetic husbands. Strangely I feel I need more help dealing with my husband than I do with my cancer.

However, when I was diagnoses with ACC it was an orphan disease. Sad how far it has come in ten years. Going back to your early posts - 2006 - I feel bad for throwing out my "mask". I kept it for five years then tossed it. I can't say I would have made it into an art piece, however, I should have kept it.

I'll give "ACC wearer" a few days to see if it fits with me. I get it. ACC is always around me. Yet, I really hate it. If I think of it "wearing" me I feel like I am in bondage. When if anything ACC has freed me. None the less, ACC is always there, ahead of me, blocking my view of the future.

I'm glad to have found you. It will be nice to keep in touch.


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