By Cynthia Hayes, Author, The Big Ordeal: Understanding and Managing the Psychological Turmoil of Cancer
No matter when you hear the words, “You’ve got cancer,” you are bound to have an emotional reaction. The news is devastating, and the physical challenges that lie ahead are very real. But, unfortunately, that is only half the story. Cancer is an emotional diagnosis too, and our psychological and physical responses to the disease and its treatment are intertwined, coloring the entire experience. Why is cancer so emotional?
- We fear we will die
For millennia, cancer has been a death sentence. So even though there have been advances in detection and treatment that mean mortality rates continue to decline, we all fear we will die. No matter what stage or type of cancer, the news instantly propels us into an existential crisis. Unfortunately, the shock that comes with hearing those words often ignites the fight or flight syndrome in our brains, flooding the system with adrenaline, which might help us flee but doesn’t really help us sit still and absorb the rest of what the doctor might be telling us. And so, the roller coaster ride begins.
- There is incredible stress and anxiety
Most of the time, the initial diagnosis isn’t the whole story—there is so much about the disease and prognosis that remain a mystery. What type of cancer is it? How advanced will it turn out to be? What will be the best way to treat it? How will you respond to treatment? The uncertainty of it all adds to the anxiety. At the same time, that initial diagnosis is likely to mean you need to schedule additional testing, choose a care team, negotiate with your health insurance provider, and deal with a host of practical considerations as you reschedule your life. On a good day, dealing with all that would be stressful, but this is not a good day. You have that fear of death hanging over you, not to mention the anxiety-provoking uncertainty to deal with, so it’s a really bad day that could last for a week or more while you try to sort it all out.
- Cancer and its treatment cause cellular changes that drive emotions.
Once you have made it through those first few weeks, and treatment has started, there is some relief from the stress: “At least now someone is dealing with my cancer.” But the body doesn’t always cooperate to make it easy. Pro-inflammatory cytokines, proteins that allow cells in the immune systems to communicate and coordinate, sometimes go a little haywire. Surgery, radiation, chemotherapy, even immunotherapy, can cause the release of cytokines. And, high levels of cytokines can cause what doctors call “sickness behavior” where all you want to do is climb under the covers. Higher still, and depression takes hold. It can be a hard pattern to break.
At the same time, many treatments include hormones, such as dexamethasone, or suppress hormones such as estrogen or androgen, or involve surgeries that affect hormone production or reception, making everything erratic. It’s very hard to feel like yourself if someone slams on the brakes to your normal hormonal systems. Fatigue sets in, moods fluctuate, and stress builds again as you watch your world fall apart around you. And since you have known your cancer care team for about a minute in the grand scheme of things, it can be hard to open up about all that you may be feeling. Besides, you tell yourself, you’re still alive. Shouldn’t you just shut up and be grateful?
- Who am I anyway?
When you don’t look like yourself, don’t feel like yourself, don’t think like yourself and are not doing any of the things in life you usually do, it can be very disorienting. Thanks to chemo-induced hair loss, fatigue, cancer-related cognitive impairment—also known as chemo brain, although radiation causes it too—and the general absence of anything normal in life, it’s not unusual for cancer patients to struggle with self identity. Whether you went from bread-winner to couch potato, from supermom to underdog, or just normal you to tired and scared you, it can be hard to hope that this is temporary, harder still to imagine that you will ever again be your old self.
- Cancer patients have to be patient
So much about cancer is hurry up and wait. You visit the doctor to discuss a treatment plan and sit in the office and wait and wait and wait. You get a test and wait for results. You have surgery and wait for the pathology report. You start treatment and wait for the next scan to tell you if it’s working. And since you have learned the hard way that you can’t trust your body—after all, it developed cancer when you weren’t looking—the uncertainty of all that waiting increases anxiety. Even if you are able to put some of the fear aside for weeks or months at a time, get scheduled for a test and the uncertainty comes rushing back, like PTSD. Scanxiety is the new norm and lasts for months, even years.
- Guilt, responsibility, shame and stigma
Many of us find loving support at home and get the supportive care we need from the hospital or cancer associations. But the lack of understanding around the emotional response to cancer makes it hard. As a society, we are not very good at talking about cancer. It’s too scary. And there is still a stigma around mental health issues, so we certainly don’t talk about cancer-related emotional health. That lack of conversation means even well-intentioned friends and family don’t really understand what you are going through or know how to be supportive. And less-well-meaning folks can cut you to the quick with words that invalidate your very real feelings. It’s not unusual to hear comments that blame you for your cancer, shame you for not following the latest internet cure, belittle you for not fighting bravely, guilt you into not asking for the help you need, and force you into isolation as would-be supporters make it perfectly clear that you should keep your emotions to yourself. Even oncology professionals are not particularly interested in this part of the process. With a laser-like focus on eliminating cancer, they often forget the cancer lived in a body that has real emotions, suffers through real side effects and has very real hopes for the future.
Just as no two cancers are alike, no two cancer patients are either. DNA, life experiences, personalities, preferences, relationships and habits all differ. So how we experience, internalize and express our emotions will differ. And, we will all find different ways to cope. But knowing that cancer is an emotional experience, that others with cancer feel the same way that you do, that there are physical changes that drive the emotional ups and downs we feel, making them an expected part of the cancer experience, and that it is ok to reach out for help can go a long way towards helping you figure out how to cope with it all. Feel what you feel. Share. Talk to someone. Get the support you need to manage the psychological turmoil of cancer. Because body and mind are so intertwined, coping with your emotions will help strengthen your immune system so you can better cope with the physical aspects of your cancer too.
CYNTHIA HAYES is a former journalist, hospital executive, and cancer survivor who currently advocates for and mentors cancer patients through various initiatives. She has been preparing her whole life to write The Big Ordeal. She learned the basics of interviewing, synthesizing information, finding the headlines, and telling a story as a journalist early in her career. After a brief interruption to earn an MBA from Harvard Business School, Hayes spent twenty-five years as a management consultant. In that role, success depended on her ability to jump into new topics, ask sensitive questions, understand specialized information, and turn complex findings into a compelling narrative.
Shortly prior to her own diagnosis, Hayes resigned from Montefiore Medical Center in New York, where for three years she had served as vice president and chief marketing officer, focused on telling stories of health and recovery. While at Montefiore, she gained a deeper understanding of medicine and had the opportunity to build relationships with cancer professionals and other experts who helped her write The Big Ordeal.
When Hayes is not on the tennis court or writing, she mentors patients going through gynecologic cancer as part of a program called Woman to Woman at Sinai Hospital in New York, and serves as a BOLD Buddy peer mentor to patients receiving care at the Montefiore Einstein Center for Cancer Care in the Bronx. She also serves on the board of Moving For Life, a dance exercise program to support cancer recovery, and Global Focus on Cancer, which provides education and support for patients in developing countries.
The Big Ordeal: Understanding and Managing the Psychological Turmoil of Cancer is available February 23, 2021 on Amazon and other retail outlets.
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