Category Archives: Support Groups

Scanxiety

billyandloribabes

I belong to an appendix cancer support group, and one of the non-words I see quite often in posts is scanxiety, a condition related to the anxiety felt about medical scans that are given regularly for an indefinite amount of time after cancer treatment. In the beginning my scans were spaced three months apart; now they are six months apart. I’ve gotten good at coping with the anxiety nowadays (four years post diagnosis) most of the time, but when I get to the day before testing, as I have today, I find my mind casting away from anything productive.

My creativity is gone. I can’t concentrate on writing my novel or even reading someone else’s novel. I want to talk about it, but I don’t want to sound like a hypochondriac. I don’t want to seem negative. I don’t want to be told not to worry, everything will be fine. Even though I know it probably will be.

IMG_0679 This photo depicts my usual outlook on life, and was taken on my beloved mountain. This is not to say that I don’t love, love, love Wisconsin!

The thing is, I’ve never gotten over that initial out of nowhere diagnosis. I can only say that I feel vulnerable to invasion, or worse, that I feel like an unknowing host. I don’t understand cancer. There are so many different kinds of cancer, so many different treatments, so many different outcomes. Mine, Goblet Cell Adenocarcinoid Cancer of the Appendix, is supposed to be quite rare. It doesn’t seem so rare when I read the stories in my support group.

Sometimes I think I should drop out of the group; it reminds me daily of something I should not dwell upon. I believe in the power of positive thinking, and maybe reading the very real cancer stories, takes some of my shine away. But I also think that I should buck up—you know, be there for those who ask for a prayer or just need to vent and need to know someone out there really hears them.

I rarely participate in any length, usually just a word or two. Others in the group are much better at knowing what to say. Quite a few of them even offer up-to-the-minute cutting edge medical information, where the best hospitals are, how to connect with an appendix cancer specialist, the ins and outs of health insurance, tumor markers, treatment experiences—all sorts of really important information. I can’t help but feel I haven’t found a place of usefulness within the group.

And here I am tonight, inexplicably sad about the way that cancer changed my life and knowing I might be able to get some help from the group if I could just express myself without sounding like an infant. Most of the posts I read are written by or for those of us who are currently in the throes of the worst of the disease—those reeling and just diagnosed, those going in for their 2nd, or 3rd, or 4th surgery. Those who are in palliative care. The loved ones of those recently passed who write to break the news to the group.

And here I am feeling pretty darn good. I am one of the lucky ones. Makes me feel like a phony just wallowing in a selfish bout of survival guilt. And yet. And yet I am sad. Sad that my life changed so drastically since my initial appendicitis attack. The appendicitis that turned out to be hiding cancer.

Four years ago I was a teacher living on a mountain, surrounded by family, friends, students, colleagues, and neighbors that I loved. My four grandchildren all lived within a few miles of me.

That is not to say that my life is not good today, but it has changed dramatically. I miss my old life. I miss my kids. The circumstances of my life after cancer and my second surgery have impacted almost every aspect of my personal life and my career. Not all of it is bad, but some of it is. I’m not going to lie.

Paris to home 2013 085

Sometimes survival calls for sacrifice, or at least that’s the way I’ve come to wrap my mind around it. Maybe it’s nothing as noble sounding as that. Maybe I just got lazy. Teaching, one of my great passions, had always required great energy, energy that I no longer seemed able to summon. I was eligible for retirement. My husband needed work and found a good position in another state. My tumor marker tests showed increasing evidence of cancer at the cellular level, yet my scans were clear.

I’m not sure what tipped the scale and brought us to this new place. Maybe it was down deep merely an urge to run, something I’d done plenty of times in my earlier years. Grief over my brother’s death, financial hardship, chemo-brain, depression, debilitating chronic health issues, fear of recurrence…all of these things and more must have played a part. I only know for sure that the world changed after my diagnosis.

That’s the thing about cancer. It sneaks up on you. I had no idea that I had cancer until I went in for my post-operative check after my appendicitis surgery. And that’s probably the root of my malaise. If I didn’t know I had it then…

Scanxiety.

I’m grateful for what I have; I still have love and family, however far away some of my loved ones are, and I will be forever grateful for what I have had. Nothing can take that away.

Mahalo.GrandmaJazz

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