Cancer is a Big #@$%&* Ordeal

by Cynthia HayesSurvivorSeptember 19, 2022View more posts from Cynthia Hayes

Nobody expects a cancer diagnosis. It comes out of the blue, defying the belief that it can’t happen to me. There are no cancer-prep classes, no training programs to help us ready ourselves for this moment, and no way to practice reacting to such shattering news. So, when we hear those words, “You’ve got cancer,” the brain short circuits, leaving us stuck in feedback loops baked into the wiring: “cancer equals death” and “showing emotions is a sign of weakness.”

These two assumptions drive a lot of the experience we have with cancer—from anxiety around testing to willingly accepting the demands imposed by others that we stay positive. But these assumptions are false.

In the past 20 years, AYA cancer mortality rates have fallen by 25 percent and survival rates for AYA cancers exceed 85 percent, meaning most of us go on to live long and productive lives after a cancer diagnosis, even if not “cured.” At the same time, emotional volatility during and after cancer is common—not a sign of weakness but a predictable side effect of the disease and its treatment. Up to 70 percent of us experience anxiety and 60 percent suffer from fatigue and chemo brain, with or without the chemo. Scanxiety is common, and some of us struggle with major depression and post-traumatic stress disorder (PTSD).

Protective Armor

Like most, I learned all this the hard way through a rough ride over my own cancer terrain. A week after a regular, unremarkable, gynecologic exam, I received a call from my gynecologist that I had flunked my Pap. She wanted me back right away for further testing and mentioned the type of cells detected before signing off to deliver a baby. It was only after I entered the name of those errant cells into the search bar on my phone that the panic set in—they were the early warning signs of an aggressive type of uterine cancer with grim survival statistics. Instantly, I assumed I was going to die.

The biopsy the following week was so painful I could have died on the exam table, but the anxiety as I waited for the results was far worse. I was certain that I had received a death sentence, and encouragement from those around me not to panic yet did nothing to allay my fears. When the confirmation that I had cancer finally came, it was actually a relief. Now that I knew what I was dealing with, I could do what I did so well—plan and manage.

I put my head down and got to work. I had to find a surgeon, I had to schedule scans, I had to rearrange work commitments. I had to tell my family what was going on. I would need a radical hysterectomy—a hip to hip incision that would allow for manhandling my guts to remove my entire reproductive system, some lymph nodes, and part of the omentum (that little-known organ that wraps around the abdominal cavity to support the other good stuff in there). After a brief period of recovery, I would be sentenced to six rounds of chemo that my doctors assured me would bring nausea, hair loss, fatigue, a compromised immune system, and the potential for neuropathy. Joy.

Right from the start, I put on my badass, I can handle anything, protective armor and got down to it. I didn’t let anyone know that I was crying in the shower every day—a safe place to shed some undetectable tears. As the weeks and months went by, I got weaker, more tired, less focused, and lost my sense of self. But I barely let on that I was struggling.

So Many Questions

Close to the end of treatment, I was sitting on a stationary bike at the gym, bald and staring blankly into space and trying desperately to make the pedals move when a guy sat down on the bike beside me and, uninvited, started telling me his cancer story. I guess it was obvious what I was going through, but his story wasn’t. He told me he had melanoma 15 years earlier, and as he shared his experience, he talked about his fear, his assumption that he was going to die, his anxiety, his sense of isolation, his depression and tears, and his loss of control over his life. We shared a moment of surprise that such diverse people with such different cancers could share so much of the same emotional turmoil.

That got me asking questions. The more I asked, the more I saw patterns in the whole cancer experience. First, I asked friends and acquaintances, and then, as I regained health and strength, cancer patients from around the world and experts of all sorts to try to understand what we feel and why—and what to do about it.

What I learned from all those questions is that cancer emotions are expected, even if no one is talking about them. The reason they are so predictable is that having cancer and undergoing the treatments we do creates changes at the cellular level to body chemistry and ultimately brain chemistry. Add to that the things going on outside the body, like the scariness of treatment and the uncertainty of it all, the media’s reinforcement that cancer equals death, or the idea that we can’t possibly be high functioning individuals if we feel and express emotions, and it’s no wonder we get a little weepy. When everyone around us tells us to stay strong, rather than giving us strength it adds to the burden, providing further damning evidence: “I must be the only one who is so weak and pathetic that I can’t smile through cancer.”

Coping With a Bumpy Ride

In fact, a typical ride through cancer is pretty bumpy, with anxiety and the fear of death as constant companions. Stress is probably at its highest when we need to make care decisions. We may feel a sense of relief when treatment starts—someone is finally dealing with this cancer—but that fades as the chaos and loss of control, fatigue, and self-identity issues emerge with ongoing treatment. A bad outcome sets us back. Progression brings anger along with renewed fear, end of treatment often leaves us bewildered and alone, and emotional recovery only happens after physical recovery is complete.

How do you find resilience and a path through it? Understanding that you are not alone or weak is half the challenge, the other half is developing some habits to help you cope. There are three broad categories of things to consider:

  • Coping by thinking, such as problem solving, training yourself to focus on only one thing or one day at a time, compartmentalizing, and sometimes entertaining a bit of denial.
  • Coping by doing, such as finding something to laugh about, hugging someone you love, petting the dog, exercising, getting more fruits and vegetables in your diet—all things that help change body chemistry for the better.
  • Mind-body coping, such as yoga and prayer, singing, and even knitting that integrates physical and brain-based activities to help sooth our agitated minds.

None of us have made it through life without facing setbacks, and what’s worked before is a good place to start for coping with cancer. However, it helps to learn a few more tricks along the way and to incorporate as many good coping strategies as possible.

Direct Hit

Unfortunately, all that emotional volatility, on top of the physical assaults of cancer, can make a mess of other aspects of our lives, especially relationships. Whether we are talking about close friendships or family, emotional or physical intimacy, there is a lot that gets in the way of normalcy when we are dealing with cancer emotions.

Right from the start, it’s hard for us to be fully open and honest with those around us about all that we are going through—sometimes to protect them, sometimes to protect ourselves, and sometimes because we don’t know and understand enough of what we are feeling to be able to share. But that little gap in what we share becomes a wedge that, over time, has the potential to drive a larger separation between us and those we love. With our intimate partners, the physical challenges of scars, ostomies, hormonal changes, and neuropathies are the icing on this self-identity crisis cake. Recognizing that the gap is there and slowly rebuilding mutual understanding can go a long way toward repairing broken relationships and preparing for the physical ones when we are ready.

Cancer is a big #@$%&* ordeal, and it can be hard to find a way to ride the waves of emotions while dealing with the physical assaults of the disease. But understanding why it’s so emotional and talking about the impact of cancer on mental health might help break those automatic feedback loops that set us into a tailspin when we hear the words, “You’ve got cancer.”

My way of dealing with the emotional turmoil was asking questions. Once it all seemed to make sense, I wanted to share what I had learned with as many others as possible. So, I built a website, TheBigOrdeal.com. I wrote a book. I speak. I mentor newly diagnosed cancer patients, and I stay involved with cancer organizations helping to address these issues. Giving back has helped me find resilience and make sense of my experience. But I also learned that despite the common threads to our stories, we are all so different—our cancer stories vary, our DNA and life histories are never the same, and each of us is unique in how we internalize and express our emotions. All that variation means the only right way to cope is the one that works for you.

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