Author: Annie Wang
Fear can come at any time during your journey: from the first concern that something is wrong, to during your first chemotherapy treatment to long after your last treatment that declared your cancer “in remission.” Fear is a normal emotional response to stress, and is not a sign of weakness or a predictor of poor outcome. No matter how much support you have, how likely it is that you’ll beat the cancer, or how “strong” you are; you will feel overwhelmed and afraid at least once during your journey. This article discusses the three types of fear most commonly encountered on the cancer journey, advice for coping with fear, and signs of when fear is a part of a more serious set of illnesses and to be discussed with your care team.
Common types of Fear
- Fear of death: It’s always the big one that almost everyone thinks of first. Time suddenly feels shorter. Thoughts of all the things that you haven’t done yet come up, thoughts about your family and how they will cope “after you” come up, and memories of other people who had cancer and perhaps died in great pain or after a prolonged period of treatment come up. Suddenly, with diagnosis, you are forced to confront your mortality and the uncertain timeline of what’s left.
- Fear of losing friends: The stories of people with cancer are separated into two courses: they either survived or died. Stories are often written after treatment; although social media is changing the discussion, not many people talk about the day-to-day of living through the treatment process. People often feel unprepared to address the challenges of cancer unless they have gone through it themselves. Some may try to carry on as if the diagnosis isn’t a part of your life, which may make you feel worse than constantly dwelling on the diagnosis. Friends may start avoiding you because “they don’t want to remember you with cancer” or “it’s not the same,” which harms everyone. Cancer used to carry a certainty of death within a few months of diagnosis; although that has changed dramatically with new treatment options, perception of and attitudes towards cancer are slow to change.
- Fear of cancer returning: it’s not always easy to predict the course of cancer; even after surgery, chemotherapy, or radiation, there may always be a fear that the same cancer will come back or a new one will appear. It can take years for this fear to go away, if it ever does, and coping with it can be an everyday challenge.
- Fear of losing a part of your identity: especially for people with gynecological cancers, the removal of one’s ovaries, uterus, vagina, or a combination of them causes great distress at the “loss of womanhood.” Your identity as a person is more than your organs and is arguably more important than keeping the organs that are causing you pain and distress. Still, it will nonetheless be an adjustment, and this fear deserves to be addressed with the same thoroughness as the other types of fear.
Preventing and coping with fear
The following 8 strategies to cope with fear are not the only ones, but ones that have been frequently cited as the most helpful ones. Everyone deals with their fear a little differently, and yours may respond best to a combination of some or all of these strategies.
- Recognize it: Fear is not always thinking of the worst possible scenario or a panicking that you are about to die. Do you wake up and stare at the ceiling for hours rather than get out of bed? Do you feel your shoulders tense when you walk to your car to go to the hospital? Have you stopped finding pleasure in your hobbies? Do you start crying after coming home for no apparent reason or for a seemingly small reason? These all can signal that some of your emotions are going unaddressed, and call for reflection about what may be causing your behaviors to change.
- Take care of the little things first: You have enough stress to cope with, and don’t need to worry over little everyday things. Take a look at all of your responsibilities on average day and begin forming a plan of how others can help you with them. Before your first appointment, arrange transportation to and from the hospital (ask friends to keep a schedule, or ask your care team about hospital-provided transportation), divide household chores among the people who live with you, discuss meal preparation, enroll your bills in automatic payments if possible, etc. Set clear and reasonable expectations for both yourself and others, and don’t be afraid to readjust them as needed.
- Fill your days with self-care: Cancer is a part of your life for now, but it doesn’t need to dominate your life. Don’t forget to take care of yourself! Keep up with friends, pick up or continue hobbies now if you have time to dedicate to them, go to a local coffee shop that you enjoy; do what you need to do to feel rested and restored. The more time you spend enjoying the present, the less time and energy there is for your mind to dwell on fear.
- Recognize days that you are at your limit, and rest accordingly: Every journey with cancer is a personal one. You are not obligated to be cheerful all the time or pretend nothing has changed since diagnosis. There will be days when you tired and down, and it is both okay and necessary to take time to rest. Treatment requires energy and good morale, and you are not obligated to push yourself to be anything you are not feeling at that time.
- Find your support: whether it’s family members, close friends, or support groups in the community or online, reach out to people you trust for support. If you would like to find more people who are going or have gone through a similar journey, your care team can refer you to support group meetings, either online or in person. Each support group operates differently; don’t be afraid to try other groups if you feel like the one you’ve been trying isn’t a good fit.
- Share your story (and listen to others’): research has shown that keeping yourself “bottled up” and closed off makes going through a tough time even worse. People want to know about your life, and as much of it as you would like to discuss. If you want to talk with other people about their lives or experiences rather than yours at the moment, don’t be afraid to tell them and immerse yourself in their day for a while.
- Have and keep up at least one hobby: In addition to keeping your hands busy during your free time, hobbies such as knitting and cross stitch alleviate stress and fear through producing “repetitive mindfulness” – keeping you focused on the task to decrease the energy your brain has to dwell on fear. In fact, crafting has been shown to decrease blood pressure and the body level of cortisol, the “stress hormone.”
- Update your care team regularly about your emotional health: the doctors, nurses, social workers, physical therapists, respiratory therapists, and others who make up your care team are on your side. They want to know exactly how you are doing and what you are experiencing. Your ups and downs are especially important if they are more than simple fear, which is discussed in the next section.
When fear gets severe
Fear can often be mistaken for demoralization and vice versa. However, fear can generally be soothed by reassurance and does not happen every day. On the other hand, demoralization cannot be soothed by reassurance, and worsens nervous habits such as holding in tension. It can also increase thoughts or feelings of hopelessness or worthlessness.
Sometimes, fear can be a part of a set of symptoms that make up serious illnesses such as depression or anxiety. Discuss with your doctor if you notice the following for more than 2 weeks:
- Continued fearful thoughts that persist throughout the day or keep you from sleeping at night
- Sleeping more hours, but not feeling energized after waking up
- Persistent low energy, feeling unable to get out of bed
- Hobbies or interests that helped you cope no longer help
- Withdrawing into your home, refusing to see your loved ones or support team i
- Persistent loss of appetite, especially if you are also taking medical appetite stimulants
- Trouble concentrating, feeling like you’re “slowing down” and not moving, or like your mind is foggy
- Feeling indecisive and unable to move throughout your day
- Feeling more irritable or bursts of anger over seemingly small things (i.e. running out of milk)
- Sudden episode of fear that causes you to feel like you’re overwhelmed with fear, and symptoms such as feeling like you’re choking, struggling to catch your breath, tightness in your chest, heart palpitations, clammy and cold hands, nausea, headache, etc.
- Continued thoughts of guilt (“it’s my fault my life is like this now”), worthlessness (“why would anyone want to be around me anymore?”), hopelessness (“I’m not going to survive this”), or suicide (“I’m better off dead/I’d rather kill myself than continue”)
JM Stagl MS et al. “Long-term psychological benefits of cognitive-behavioral stress management for women with breast cancer: 11-year follow-up of a randomized controlled trial.” Cancer. 121(11): 1873-1881. Jun 5, 2015. doi:10.1002/cncr.29076
National Cancer Institute. “Feelings and Cancer.” Last revised Dec 1 2014. https://www.cancer.gov/about-cancer/coping/feelings
American Cancer Society. “Anxiety, Fear, and Depression: having cancer can affect your emotional health.” Last revised May 24, 2016. https://www.cancer.org/treatment/treatments-and-side-effects/emotional-side-effects/anxiety-fear-depression.html
Jane Brody. “The Health Benefits of Knitting” The New York Times. Jan 25, 2016. https://well.blogs.nytimes.com/2016/01/25/the-health-benefits-of-knitting/?_r=0
About the Author
(Ran) Annie Wang is a third year medical student at UAMS, in the midst of surviving adulthood and thriving in medicine. In her free time (ha!), she enjoys writing and needle crafts.