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.

Friday, January 4, 2008

Cancer Community Wisdom

I communicate with many cancer patients now as a result of having been in the cancer world for several years. I so appreciated the wisdom that fellow patients have articulated and sent my way this week.

One has coined a word for the anxiety of follow-up cancer scans: Scanxiety. A perfect word! Everyone copes with it differently, but we all have "scanxiety".

Another friend who lives in the cancer remission world told me "I never realized how tough it was to LIVE with a cancer diagnosis". She is a medical professional and has been around dying cancer patients, so she understood that part of it. She understood dying of cancer. But it never occurred to her, until she had to do it, how tough it was to live with a cancer diagnosis.

It's the living in limbo that's is so tough, even when the limbo lasts for many years. One cancer patient told me, and I've heard this expressed by other cancer patients, that sometimes they think hearing the cancer was back would be easier. At least they would know they could expect a shortened life and plan accordingly. They could finally quit waiting for the other shoe to drop. The waiting and wondering and feeling vulnerable would be over. But then that thought triggers guilt at not feeling grateful for still being alive when so many others have lost their battle with the disease.

We kind of miss the days when we didn't live with the fear of dying, or on the flip side, when we didn't have to feel guilty if we ever seemed ungrateful for a single day that we are still alive.

There's a story that has been used to describe what cancer survivors feel, especially around testing time. It is called Damocoles Syndrome, based on the myth of The Sword of Damocoles:

http://www.geocities.com/Hollywood/2549/damocles.html

A fellow cancer survivor said this about even good results: "It's like you get a reprieve and can go on pretending to have a normal life again for a while...until the next cause for concern hits."

This time was a little bit worse for me.....my husband, who has been my number one support person throughout it all, is also nurse. I get my scans done at the hospital where he works. I told him I was anxious about my scan results after waiting about 36 hours, so he told me as soon as he got to work he'd pull my scans up on the computer and call the results to me.

He never called.

Well, in my cancer survivor mind it had to be because the scan results were bad this time (remember I had a slightly elevated CEA) so he didn't call because couldn't tell me over the phone. Maybe the scans hadn't been read so weren't available yet, but then he wouldn't he call me and tell me that, wouldn't he?

On the off chance that he'd just forgotten to get my results, I finally called him right before his shift was over after eight hours of thinking the worst....if the results were bad I'd know within an hour anyway, so I had nothing to lose. And I would have hated to find out he'd forgotten and to have to wait another 24 hours for results.

Turned out he HAD forgotten to pull up the results and did as soon as I called him.....and they were fine. He didn't understand scanxiety.

Now I can live kind of normally, until next time.

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