On March 3rd 2021, The Big Ordeal author, Cynthia Hayes, delivered a presentation on the emotional turmoil of cancer, sponsored by Sharsheret, Cancer Support Community and Woman to Woman. We didn’t have time to address all the questions raised, so the conversation continue below. You can see the original presentation here. And keep checking back for more questions and answers as we add to this post in the coming weeks. (Note, new questions will be added to the top.) Additionally, if you have a question you would like answered, please feel free to submit it using the form at the bottom of the page.
Cancer is a big ordeal, but with help, we can learn to cope with it all.
How do you deal with friends who disappoint during this period? I don’t want to cut people off, but not calling and asking about how I am feeling really makes me doubt that they are ‘friends.’
How do you handle family members who are not supportive or who do not understand at all what you are experiencing?
Unfortunately, many cancer patients experience some sort of disappointment from friends and family. There are many factors that contribute to the shortfall, but often as patients we find ourselves angry at, or making excuses for, those around us who are not as supportive as we would like them to be.
It can be difficult for people without direct cancer experience to know what we are going through and, because we don’t talk about cancer or emotions very well as a society, many people have no experience or practice dealing with these challenging topics. They are uncomfortable, don’t know how to respond, and choose to avoid engagement. Others have such a personal fear of cancer that they can’t confront it, and still others assume that they are respecting privacy by not asking how we are doing—that if we want their help we will ask for it.
It can be hard as patients to take on one more burden, and so we are more likely to stay quiet about our disappointments than to speak up, which just allows them to fester. However, it can make a huge difference to say to a friend or family member, “I know my cancer is challenging for us all to deal with, but as my (friend, spouse, sibling) I really need you to…” and make a specific request, whether it be to communicate greater sensitivity towards you and your emotions, or to do something in particular to support you. In the movies, a loving spouse always knows the perfect birthday gift to give as a surprise, but in real life, we have to give hints. Same with cancer—we have to let those around us know what we want and need. This is particularly so when we try to protect ourselves by keeping some of our emotions to ourselves. It can be scary to admit to ourselves, and to others, what we are really feeling. Open communication can make us more vulnerable, but it can also help ensure we get the support we deserve.
Can you please elaborate on the relationship between pre-existing depression and anxiety, and emotional fallout from cancer? How do we distinguish a side effect from our pre-existing condition?
How do you get over cancer with severe depression?
Depression and anxiety are common side effects of cancer and its treatment. There are chemical changes in the body as a result of the disease, surgery, chemo, radiation and immunotherapy that help drive these emotions and make it difficult to feel anything like normal. But, there is so much variability in how people respond to cancer and its treatment, that it is important to be attentive to how you respond and how well you cope. Cancer-induced anxiety and depression may be experienced very differently than pre-existing emotions, and may require different coping techniques. Being aware of your response and sensitive to the need to address any emotional changes becomes critical.
While it may be impossible to tease out the difference between a side effect and baseline emotions, if your anxiety and depression are getting in the way of your ability to function, please seek out professional help. Many cancer treatment programs include access to supportive or palliative care—care designed to address the side effects of cancer and its treatment. Your oncologist can make a referral for you, or you can reach out directly. Additionally, programs such as Sharsheret and Cancer Support Community offer one-on-one support.
Is there such a thing as coping too well? How do you recognize denial and is it a good idea to hammer home reality?
There are so many ways experience cancer and to cope with those feelings. There is no single right way to feel, or wrong way to cope. So long as you are being honest with yourself about what you are feeling, any coping mechanism that works for you is a good one.
Denial is an effective tool for many of us that allows us to focus on living our lives without the weight of cancer interfering with our day-to-day activities. It also allows us to project an image of strength that can protect us from well-meaning friends and family members asking questions we would rather not answer, and from our own fears.
During the intense period immediately after diagnosis and while going through treatment, denial can also create a little emotional distance, allowing us to recover physically before dealing with our emotions, and maybe even gain some reassurance about future prospects. However, by projecting strength, we may not be getting the support we really need. And, at some point, we all need to process the impact of cancer on the body, the psyche and our assumptions about life. For some of us that day of reckoning comes when treatment ends, and we are no longer being actively monitored. For others, it may not come for years, even decades later.
Looking for Answers
Many people find they have the greatest access to support early in the treatment and recovery process, and that friends and family tend to lose interest when treatment ends, assuming that we are “done.” If we haven’t yet dealt with the emotional toll of the disease, this can be a particularly challenging time as access to the medical team fades at the same time as friends and family who assume we are “back to normal.” As you approach the end of treatment, ask yourself, “Am I really okay with my diagnosis and what it means for my life?” Consider writing about your experience as a way of getting in touch with your emotions. And if something unexpected rises to the surface, know that Sharsheret and Cancer Support Community offer so many types of supportive services beyond the help your immediate friends and family can provide.
What is the best way to handle emotions of a stage 4 terminal diagnosis? And, also the best way to handle grief of how life used to be?
I am so sorry that you are dealing with a difficult diagnosis. While many of us fear we will die when we hear the words, “You’ve got cancer,” it is all the more real when the diagnosis includes aggressive, advanced-stage disease. Unfortunately, there is no magic bullet—for the disease or the crushing grief and sense of loss that comes with it. Similarly, there is no single best way to cope. Each of us must find the coping mechanisms that help us get through the days.
It can be helpful to reflect on what has worked for you in the past when coping with other emotional challenges. Some of us hunger for more information to help us address fears. Others prefer to put up defensive walls and do the best possible to ignore reality. Some like to cope by doing things, others prefer to cope by thinking through things and solving anticipated problems. Some find solace in prayer, meditation, massage, others prefer laughter, hugs and friends.
Learning more about coping and resilience may be helpful. So, too, may be the recognition that it is okay to cry. Grief takes many forms, including anger and resentment, and that there is no wrong way to feel right now. But please reach out to those who love you for the support you need. Studies have shown that sharing the emotional burden brings physical and emotional strength. But if the grief turns to despair, talk to a professional—a psychotherapist, a pastor, a palliative care doctor—to get the help you need to get through it all.
How does one manage the internal, intense, and conflicted emotions when deciding how much to reveal to family and friends about cancer, including outcomes, fear of scary procedures or even death?
This is such a tricky situation for us all to navigate! Being honest with others about our fears and emotions requires we be honest with ourselves. And often, that is too much to handle. For many of us, creating a protective veneer of positive energy and confidence allows us not to face the very real risks inherent in the diagnosis and treatment. Additionally, sometimes we withhold information from family and friends out of a protective instinct for those we love. “I don’t want to worry (parent, child, spouse, friend) unnecessarily, so I’ll just keep quiet about it.”
The key is to understand how much support you want from friends and family, and therefore, how much you need to share in order to get what you need. If you convey that it’s all under control, you are likely to receive much less support than if you let your emotions show. But, once you open the doors, be prepared for the floodwaters, and, unfortunately, some insensitive comments and questions. It is so difficult for people to understand what we go through as patients that well-meaning folks can hurt us with offhand comments they never intended as harmful. Telling you everything is going to be fine may feel instinctual and supportive to someone who loves you, but may feel invalidating if you are fearful and anxious.
Feel What you Feel
Because sharing is a proven mechanism for coping, it is often so helpful to find someone with whom you can talk freely about your feelings. Perhaps a support group or a peer mentor, both available through Sharsheret. Then, think through your family and friends. Who is likely to be most supportive? What do you need to share in order for that support to be available to you? With whom do you need to be more circumspect? Do you need to reduce your expectations of some friends and family members? It’s not uncommon for some folks to be so uncomfortable with your cancer diagnosis that they distance themselves. It’s not a reflection of you, or even how much they care for you. Mostly, it reflects their comfort with difficult emotions, and their capacity to empathize.
Whatever you decide to share, please understand that you have a right to feel what you feel. There are no wrong emotions. And there are very real physiological changes as a result of cancer and its treatment that make our emotions intense during this time. Most importantly, there are resources beyond friends and family to help you cope.
I am struggling with find others who can relate and that I can talk to. In one support group I attended I was the youngest by about 20-30 years. I have outreached to the young survivors coalition about starting a group in my area. It’s also a struggle with my husband who cannot understand the fear I have now.
Many young cancer patients struggle with this same issue, feeling all the more isolated due to their age and the added complications that treatment brings to younger patients. To be facing existential worries at a time when friends are carefree can be very challenging. However, there are a number of organizations geared towards providing support and connection to the younger cancer patients. Check out: GRYT Health, Elephants and Tea, Stupid Cancer and IHadCancer. These organizations were all founded by cancer survivors who were young at the time of their diagnoses and recognized the unique concerns of patients under 40 years old. There are opportunities to learn from others, connect, and even meet in person—at least, to the extent the pandemic allows.
I am sorry you feel unsupported by your husband. It can be difficult for spouses, and anyone without a diagnosis, to fully understand our fears as patients. But what comes off as not understanding may be self-protection. There is a good chance he is afraid for you, and fearful of how he will carry on if your cancer doesn’t disappear. It can be helpful to have a conversation about what you are feeling, how you perceive his comments, and what you would like him to say or do differently in order to better help you cope. That may bring greater understanding and a more supportive home environment.
How can I stay positive even when I am scared and not feeling well?
There is no requirement that we stay positive. In fact, it is best to allow ourselves to feel what we feel, which at times is likely to include anxiety, fear, isolation, fatigue, depression, anger, loss of control, even helplessness. Research has shown that expressing our emotions—whether by talking with someone else or writing them down or screaming into a pillow—can help us cope. By acknowledging our emotions, it can be easier accept them as legitimate, learn how to cope with them and eventually, to let them go.
Unfortunately, we often feel pressured to be positive and are told that positive energy will help us recover. For some people, positivity becomes a habit and over time they do find that they actually feel positive. They come to believe that everything will work out for the best. But for many of us, that pressure is actually toxic. It increases our self-doubts and invalidating the very real negative emotions we are feeling. It can help to be kind to yourself, to talk to yourself as you would someone you love who is suffering. Ask yourself why you are scared and if that fear seems justified? Ask yourself what you would want to know in order to alleviate that fear? Is there anything your professional care team can do to help provide that knowledge? Are their things that you or your care team can do to help you physically feel better?
Chemical Changes
A lot of what we feel during cancer and treatment is driven by chemical changes that stem from the disease and treatment. There are some things we can do to counteract those changes and get a positive boost. Exercise, which seems so hard to imagine when we are dealing with cancer, can help change our emotions. So can hugs, laughter, sunshine, interacting with pets and being social. But, it takes time, and there is no foolproof shield against the negative emotions. If you feel like crying, let yourself cry. But if negative emotions make it impossible for you to get through your day, seek out professional help. Many patients find that antidepressants and pain medication allow them to better cope with cancer and get through what they must endure.
How can I set aside my fears and emotions to make clear treatment decisions?
Making decisions about care is one of the most stressful times for many cancer patients. We have to absorb so much information in a short period of time and make decisions that have a tremendous impact on our futures. The fear and anxiety that accompany the stress only add to the challenge. Some patients are expertly guided in care decisions by doctors they trust, or off-load the decision-making to a loved one. Others seek out lots of information and multiple opinions. And still others struggle to find doctors with expertise in their particular area of need. Fertility and reconstruction questions further increase the stress and complicate the process.
Unfortunately, stress inhibits the ability to make decisions, getting in the way of normal brain functions we rely on, such as absorbing and retaining new information, reasoning, even the willingness to make short term sacrifices to achieve a better outcome. Giving yourself ample time to think, and being clear about your priorities and how you will make the decision, can help. Many people find that talking through the decision with someone who truly understands you can also help – but don’t invite too many opinions or you might be overwhelmed.
Learning to Cope
There are many coping techniques that can help you manage your fears. Meditation and deep breathing are particularly effective for short term relief. Then, to better engage the part of the brain responsible for reasoning, it also can be helpful to lower your stress hormones. Some ways to do that include going for a walk, hugging someone you love, playing with the dog or watching a funning video. Other things that have been proven to help include getting a good night’s sleep and feeding the brain. The brain needs glucose to function, and decision-fatigue can often be alleviated with a glucose-laden treat. Not that we need a steady sugar diet, but sometimes a cookie while making stressful decisions can be a good thing.
Now that genetic testing beyond BRCA is more prevalent, can you speak to the emotions around having a gene mutation associated with cancers that do not have good screening tools (e.g., pancreatic, ovarian) and where the risk is not certain and evolving.
One of the many challenges in confronting cancer is recognizing how little control we actually have over life. We can do everything right to care for our bodies, and still get cancer, while someone else does everything wrong and never does. There are so many factors that contribute to the development of cancer, many of which are beyond our control. Genetic testing can provide very useful information, but it can also lead to increased anxiety, because while it gives us another piece of the puzzle, it doesn’t give any further control.
Unfortunately, uncertainty and perceived lack of control have been shown to increase stress. One of the few things we can do to combat that sense is to understand the “tricotomy” of control—to know that there are some things we can’t control at all, some things for which we can take responsibility to better meet the challenges ahead, and some things we fully control.
Regaining Control
We can’t control the fact that we have a mutation, but we can better prepare for a cancer risk by actively managing aspects of health we do control. This includes strengthening the immune system (eating well, exercising, etc.) and adhering to an appropriate schedule of follow-up testing and scans. Talk to your doctor about what the best follow-up protocol might be. You might also consider an additional conversation with the genetic counselor to determine what is known about other mutations that contribute to the cancers of greatest concern, and any factors that buttress against those mutations. The science is changing rapidly, and there may be more answers available in the coming years, so keep checking.
But for now, your greatest comfort is likely to come from learning to control your response to uncertainty. This takes a focus on mastering stress management techniques, and a lot of practice. Meditation, cognitive behavioral stress management and other mindfulness practices have been shown to help reduce stress. In fact, in one study, as little as 20 minutes a day for 8 weeks was enough to create lasting changes in how the body deals with stress. There are lots of resources available to help—everything from apps on your phone to integrative medicine programs at leading hospitals—but it does take commitment to establish a new stress-reduction habit. While you are building that habit, if your anxiety gets in the way of daily life, talk to your doctor about medication that may help too.
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