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.

Whew!!!!

I got my CT scan results back, they were fine, no cancer. It was a long 36 hours waiting for the result, especially in light of the slightly elevated tumor marker, but I’ve had to wait longer before. So I feel so relieved…and glad that I can not do another CT scan for a year.

Thank you to the many of you who sent prayers and good thoughts my way, they were very much appreciated.

CT Techs and CT Scans

Happy New Year! I started this blog one year ago today…very cool I’ve had another one-year landmark. I celebrate them all now.

I just drank my first pint of barium, more tomorrow early, more when I get to the hospital, and of course the IV contrast as always. I made up my mind long ago to enjoy the taste of barium, and I do! Mind over matter. I liked mint better than the new Berry Smoothie, but my radiology department doesn’t offer a menu of flavors, just Berry Smoothie. I decided I’ll make that my favorite flavor now.

I also know what to wear to a CT scan now. Leggings, bulky shirt or sweater and no bra. When they tell me to change into a hospital gown, I tell them that won’t be necessary as I’m wearing non-metalic clothing. So I get to do my CT scans fully dressed, no humiliation of a hospital gown for me anymore! I think this will be my tenth or eleventh CT scan. I’m good at CTs now, I know the ropes.

And I guess I’m blessed to have been around to have this many scans.

I was thinking of the poor techs who do our scans, I wonder if they realize how closely we watch them. I know I have always watched their body language and facial expressions very closely. If they seem too serious or aloof, is it because they see something bad on the scan and want to keep a professional distance? If they don’t say much, is it because they can’t tell us what they saw, our doctor has to tell us? And if they are too cheerful, are they trying to cover for the fact that they have just seen a mass on our scan and don’t want us to know? Only once have I had a CT tech who knew I was a medical professional confide to me “Hey, it looks fine to me, I didn’t see anything!” The rest I’ve scrutinized endlessly.

Then of course it’s the waiting game for the results. Every time the phone rings I worry it might be the oncology office calling with a bad result. If they don’t call, then I sometimes worry that the scan result got faxed to the office and was missed in the pile, and no one saw it….maybe there was something on it that needed to be seen but was missed? I’m a medical professional, I know that happens sometimes. The worst I think was when I came home and someone had called but hung up without leaving a message on my answering machine…maybe it was the oncology office and they didn’t want to leave bad news on the machine? Of course now I have caller ID so I can confirm that.

Sometimes I have a friend or my husband just pull up my results on the hospital computer. Sometimes I go to the hospital radiology department and just sign for a copy of my results. Sometimes I make an appointment to get the results from my doctor…once when I was there waiting for my results my blood pressure was 180/110. Guess I was nervous? Would have been kind of ironic I guess if I’d had a stoke while waiting for the results of a CT scan that was fine!

I know we all go through it. I guess it’s character building. And it’s so wonderful when we get to celebrate good results and to know we have a long stretch of time before the next scan.

I wish that for all of us.