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Dealing with “Cancer PTSD”

by Joanna Montgomery

Inspiration image


(Photo by Brooke Kelly Photography)

From the time I was diagnosed with cancer, an invisible count­down clock started ticking in the back of my head. I was told I’d need 24 rounds of chemotherapy to eradicate the cancer inside me. So from the very beginning, I thought of my life in terms of how many treatments I had left. Three treatments down, twenty-one to go.

Twelve down, twelve remaining.

Just eight more left. Then six. Then three.

One more treatment left. And then what? Everything would go back to the way it was before I was diagnosed?

Well, not quite. But I didn’t know that then.

At first, I felt a sense of accom­plishment and excitement with each treatment successfully in my rear-view mirror. However, as the end of treatment neared, I started feeling increasingly nervous.

You see, as unpleasant as chemo and radiation can be, there’s something comforting about being in treatment. There’s a strong sense of security that comes with being closely watched by medical professionals. In having a dedicated care team monitoring your blood, checking your vital signs, asking you questions, and listening to your thoughts and concerns. In walking into the cancer treatment center and being heartily greeted like Norm on Cheers. There’s a sense of community there that is warm and welcoming and safe.

Once you’re done with treatment, however, you’re often unceremoniously cut loose, the guard station abandoned.

As unpleasant as chemo and radiation can be, there’s something comforting about being in treatment.

I was a mixed bag of emotions on my last day of treatment. I felt relief at having finally completed six months of intensive intraperitoneal chemotherapy. But I also felt something else that day – uneasiness. Who now would be mind­ing the shop?

What I have learned in the year since my last infusion is that the end of treat­ment is not the end of cancer. Cancer will always be with me, even when there is no tangible evidence of disease. We are forever changed by our diagno­ses; we will never again be the same. We see our lives and relationships through a new filter.

Part of this has to do with the linger­ing side effects of treatment. I may never fully recover from the physical toll chemotherapy took on my body. And the changes I’ve experienced are not just physical. Cancer took an emo­tional toll on me as well. I now have what I call “cancer PTSD (post-traumatic stress disorder),” an underlying fear of recurrence. Every muscle spasm or un­explained twinge of pain causes me to wonder, “Is the cancer back?”

It turns out we’re all a little hyper-aware of our bodies post-treatment. And the periodic scans and blood work just serve to increase our anxiety at scan time. (I’m told that “scanxiety” never really goes away.) We ask ourselves, “What if?”

So how do we deal with cancer PTSD? How do we move on? For me, it’s about taking charge of the things I can control: eating a clean diet; get­ting plenty of exercise and learning to move again; and meeting my chemo side effects head-on with physical ther­apy, acupuncture, lymphatic drainage massage, and education. I’m doing everything I can to repair the damage done to my body and get stronger, making wellness a priority instead of a luxury.

So how do we deal with cancer PTSD? For me, it’s about taking charge of the things I can control.

My commitment to wellness and education also has included genetic counseling and testing to determine whether my siblings, my child, or I have a genetic predisposition for certain types of cancer. And it turns out that I do. I tested positive for the BRCA1 genetic mutation, and because I had already gone to battle with one form of pri­mary cancer and wasn’t interested in taking on another, I underwent a pro­phylactic bilateral mastectomy. It felt good to be doing something proactive rather than reactive this time.

While there is no doubt that cancer transforms us, making us a little skit­tish, there are things we can do to take control, to not feel so helpless. It’s all about controlling the things we can and letting go of those we can’t, taking each moment as it comes, and not “what-iffing” ourselves to death in the meantime. We’ve been given a second (or third or fourth) chance at life. Let’s make the most of it.

♦ ♦ ♦ ♦ ♦

During an emergency C-section, Joanna Montgomery’s doctor discovered a mass on her Fallopian tube that turned out to be stage IIIC gynecologic cancer. It was in this emotional maelstrom that Joanna began to chronicle her experiences of treat­ment, motherhood, and marriage in her blog, It’s Cancer, Baby. She has since become a regular contributor and columnist for the Huffington Post’s Healthy Living and CafeMom’s The Stir. She has appeared as a guest on Katie and participated in a 10-part mini-documentary series about her journey. Learn more about Joanna at HelloJoMo.com.

This article was published in Coping® with Cancer magazine, November/December 2013.