Fear of Cancer and other Emotional Impacts of the Disease

It’s been five years since I woke up from my first ever colonoscopy and heard the ominous words. “We found a tumor.” When the pathology report was ready, I heard even worse news. It was cancer, and it was malignant. The fear of cancer that I have felt for the last two days has materialized. I was sick, fearing the worst and hoping for the best.

My phone dropped to the floor and I felt as if everything around me stopped. I was all alone, just me and the cancer, even though my husband was just in another room. He walked in, saw my face, and knew immediately. We fell in each other’s arms and started crying uncontrollably. Our three-year-old son and twelve-year-old daughter were at school and so we didn’t have to control ourselves. We could let it flow until there were no tears left to cry out.

Emotional Rollercoaster

Thus started an emotional rollercoaster which, though with less intensity, is continuing to this day. Different emotions for the patient, different for the caregiver, but equally strong, and, at times, debilitating.

Cancer emotions are so varied. Within only a few minutes, one can oscillate between the darkest fear and the strongest hope. Throughout the entire journey, I had constant anxiety and acute panic before every single test, scan, or procedure. With passing time, I learned how to deal with guilt whenever I was about to celebrate some good news. I would ask myself, how come I am so lucky and still here while X who had the same prognosis has died already a year ago? And there was the constant fear of cancer recurrence: Will it, or when will it, come back?

Cancer Emotions

National Cancer Institute discusses several stages of emotions one might encounter during and after the illness. I went through some of them.

Sense of Overwhelm

The initial diagnosis creates a shock followed by a sense of extreme overwhelm. I was told about my cancer one day, and the next day – and weeks to follow – I had to report to back work and continue being a wife and mother. In the shortest span of time, I had to deal with life in general while trying to figure out what will happen next:

• How long do I have?
• Will I see my kids grow up?
• How do I get “it” out of my body as fast as possible?

And then the host of practical considerations:

• Who do I see next?
• How do I find the best doctor?
• What will my insurance buy me?
• What is the prognosis?

The last question was particularly hard on me. I dove into every online source I could find to know about colorectal cancer. Of course, the harsh statistics, the description of treatments, and patients and caregiver stories mostly without happy endings horrified, if not paralyzed me.

Almost all cancer survivors will face psychological and emotional issues that can show up many years after treatment.

MDAnderson

Actually, what helped me in these initial days was keeping up with work and my routine as much as I could. I still prepared dinner every day, I put my toddler to bed, and I talked to my pre-teen before bedtime. It was hard to be fully present, no doubt. The fear of cancer was always in the back of my mind, trying to take me into that dark place. But having something to do kept me from just curling up on the floor and shutting myself off from the world.

Denial

“When you were first diagnosed, you may have had trouble believing or accepting the fact that you have cancer. It can be helpful because it can give you time to adjust to your diagnosis. It can also give you time to feel hopeful and better about the future.”

National Cancer Institute

I have to say, I personally never felt denial during my illness. I am a rather practical person, down to earth, a strong believer in science and hard facts. Once I saw the picture of the tumor from my colonoscopy and read the pathology report, there was no denying the fact that I was seriously ill.

Anger

Yes, I was angry. I was furious at times. “Why me?” “Why now?” “I have two young babies to raise, how can I be severely ill, maybe dying?” “What am I being punished for?”

I wasn’t an angel in my youth: I didn’t eat an optimal diet but who does when they are young? I went to parties, enjoyed occasional alcoholic beverage, I smoked my entire adult life with the exception of pregnancies and breast-feeding periods.

But in the last four or so years prior to diagnosis, I was devoted to a healthy lifestyle. I joined a gym, did indoor cycling and yoga, and became a strict vegan for a while. I felt super healthy and on the top of the world. When I lost tons of weight, I assumed it was due to veganism and all the exercise. In reality, it might have been simply due to cancer developing.

Little wonder, I was angry that despite all this effort, despite embarking on this path to perfect health, I got hit with the worst disease out there, the killer cancer.

Then there was anger at people around me: feeling like they don’t get it, no matter how supportive they were. And then the anger at myself for feeling angry at those trying to help me.

There are two things a person should never be angry at, what they can help, and what they cannot.

Plato

If you feel angry, you don’t have to pretend that everything is okay. Talk it out with family or friends or journal about it. Or cry. That’s what helped me on occasion. Besides the anger was just temporary. Once I informed myself more about the process of treatments, I was able to focus my mind and emotions on that.

Cancer Fear and Worry

Worry and fear, constant companions! A few weeks before my diagnosis, my husband booked a flight for himself and the kids to visit their Grandma. I couldn’t go since they had a full week off and I had only two days off work. At the time, I was looking forward to this week alone in the house. I planned to do a juice fast and spend my free time reading and playing with the cat.

And then, they left barely a week after we heard the news of my cancer. Being alone in the house was an utter horror! Nothing to do but consult Dr. Google, get all the confusing info about the course of treatment, what to do, what not to do, etc.

First, I didn’t know anybody who went through cancer. Second, I had no clue about support groups yet. Third, I wasn’t even informed about the course of action my team of doctors would design for my case. Heck, I didn’t even have a team of doctors yet. I was totally overwhelmed and felt utterly alone, scared, and sad.

• Will it be operable? And what if it is not?
• Will I have chemo and what effects will it have on my overall health?
• Will I have to get radiation? If yes, will it cause secondary cancers?
• Will I be able to keep my job? If not, where will I get insurance to get treated?
• How will my kids react to my illness, my treatments, and my changed appearance?
• How to talk with the kids? Keep them in the dark or tell them what’s coming down the pike?
• Will I survive or will I die?

A co-worker put me in contact with his wife who went through two cancers already. She called me and let me cry on the phone even though I have never met her before. And then discussed her situation and how she managed to overcome the beast twice and assured me that it is possible.

This phone call was a true Godsend! It helped tremendously. All of a sudden, I realized that there are thousands affected by cancer and of course, many succumb to it. But there are also many who survive it and there is no verdict on me out there. I had my first concrete suggestions from an actual patient on how to cope with my new situation. This was my first glimmer of hope.

I have learned over the years that when one’s mind is made up, this diminishes fear; knowing what must be done does away with fear.

Rosa Parks

Hope

Balancing fear of cancer and hope is a difficult but doable task. It took me about two years since diagnosis to figure out how to cope with the constant worry.

Find People Who Lift You Up, Not Pull You Down

I tried to surround myself with hopeful people, including my medical team. When my first oncologist retired after one year of treating me, a great guy, with an amazing bedside manner; I was assigned another doctor. He was well trained, I’m sure, and knew his craft. But every time I visited him, I would come out of his office crying and shaking with anxiety.

Why? He would through the dreaded statistics at me: 10% chance of survival beyond 5 years; 90% chance of recurrence within two years, etc. I could not deal with it so I “fired” this doctor. I was assigned another one, one who doesn’t hide research from me, but one who never treats me like a statistic.

You’re not a statistic. If statistics mattered, nobody would play the lottery and we’d have a lot fewer doctors.

Anonymous

Find Cancer Support Groups

I joined several support groups, locally at a physical location – a wonderful center called We Spark in Sherman Oaks, CA. The center offers not only individual and group support groups for every stage of cancer (in treatment, in remission, grieving group, caregiver group, adolescent group, and more), but also different complementary treatment modalities I could try (yoga, reiki, chi gong, acupuncture, reflexology, hypnosis, and more).

Being there with other patients became a second home, a place I could be myself and free to express all these different feelings rushing through me and which, sometimes, I felt timid about expressing at home.

Join Online Support Groups and Cancer Forums

I also joined Facebook support groups for patients and survivors. Once there, I read their stories and advice and posted questions and my own bits of wisdom gained throughout my treatments. Over the years, I befriended lots of people from around the world who were in the same boat I was.

I loved my group and felt empowered to be there. There was so much information and hope there, until – many of my Facebook friends started dying. Even though I knew these people only as their profile pictures and stories, it hit me really, really hard. Every new death would bring a whole host of emotions with it: fear, anger, guilt.

I befriended a woman who was going through exactly the same treatments, just about six months earlier. We talked on the phone occasionally, and she was a great source of knowledge and encouragement for me. She was a few years younger than I, and she took the illness with an amazing sense of courage.

I always felt amazed at how optimistic she was, how easy-going about all the stuff going on during the treatments, how capable of taking even the worst setbacks in strides. When she passed away at the age of 46, two years into our phone friendship, I was devastated.

When a full-blown depression set in, I finally started medicating for it, and it helped. But I also knew that I had to take a break from that Facebook group. It became simply too much to deal with all the loss. I am only slowly returning to it now and trying to offer some assistance to new patients who go through what I have gone through.

Cancer Depression

Managing depression has been a difficult task for me. For a long while, I didn’t want to get on anti-depressants. I knew that my body was already overburdened with chemotherapy and radiation. Learning how to meditate to offset depression was elusive. I failed many times trying, until it finally clicked and worked wonders.

Guided imagery was another modality I attempted. But I couldn’t really focus and quickly became angry at how unimaginative I was. Depression has many faces, some of them purely emotional, others physical. Some common symptoms of depression are (adapted from NCI article on the emotional health of cancer patients)

Emotional signs:

• Feelings of sadness that won’t go away
• Feeling emotionally numb
• Feeling nervous or shaky
• Having a sense of guilt or feeling unworthy
• Feeling helpless or hopeless, as if life has no meaning
• Feeling short-tempered, moody
• Having a hard time concentrating, feeling scatterbrained
• Crying for long periods of time or many times each day
• Focusing on worries and problems
• No interest in the hobbies and activities you used to enjoy
• Finding it hard to enjoy everyday things, such as food or being with family and friends
• Thinking about hurting yourself
• Thoughts about killing yourself

Some people will have physical symptoms and/or undergo body changes:

• Unintended weight gain or loss not due to illness or treatment
• Sleep problems, such as not being able to sleep, having nightmares, or sleeping too much
• Racing heart, dry mouth, increased perspiration, upset stomach, diarrhea
• Changes in energy level
• Fatigue that doesn’t go away
• Headaches, other aches, and pains

It is probably safe to assume that almost anyone who goes through a major illness will be affected by some form of depression. I certainly was, even though I never thought of hurting myself in any way.

Looking in my kids’ faces would always pull me back from the abyss and I would find the way into the light again. I also tried several coping techniques like journaling and exercise, you can read about these strategies in this post.

If you are experiencing any signs of depression, discuss it with your doctor. I strongly suggest getting in touch with a palliative care specialist. Contrary to some opinions, palliative care is not only for hospice patients. Palliative care provides various services, including social worker advice, psychiatric evaluations, and treatments, integrative care modalities, pain management, etc.

Cancer Guilt

I’ve experienced two types of guilt in these past five years:

First, feeling guilty for having caused or contributed to my cancer by lifestyle or nutrition. Did I stress too much? Relaxed too little? Would I get sich, had I quit smoking earlier? Why did I drink? Why did I not run to the doctor at the first sign of trouble?

It took me some time to realize that even though lifestyle choices do play a major role, getting cancer is still largely a lottery game. Children get cancer, health nuts get cancer, and marathon runners get cancer.

There are so many potential contributing factors to my illness: mercury tooth fillings; root canals; the fact that I’ve been living in polluted cities like New York and Los Angeles in the last 20 years; the fact that I was suntanning on the day when the radioactive cloud from Chernobyl passed over my country, Poland.

Playing the blame game is not helpful in any way. Better stop it before it eats your mind. Focus on now and the future.

Don’t look back–you’re not going that way.

Mary Engelbreit

The second type of guilt is the survivor’s guilt. Through my Facebook group, I met local cancer patients, and we have been meeting on and off for a few years. I have a photo of about seven of us, meeting for a nice brunch in 2017. Of the seven, only two, I included, are still on this Earth.

This is why on this fifth cancerversary I have such mixed feelings. I’m not even sure I should be celebrating because I feel that to celebrate my life might belittle their deaths. Such beautiful people, the overwhelming majority under fifty, vibrant, hopeful, fighting souls, all gone too early.

Gratitude

Last, but not least, there is gratitude. Until a few years ago, I would get majorly annoyed upon hearing the sentence: “Cancer was the best thing that ever happened to me.” Was it really? Going through three surgeries, through multiple hospital stays, many rounds of chemo and radiation was such a blessing? Losing half of your body weight and most of your hair, dealing with horrendous side-effects, was the “best thing”?

I still don’t think about cancer this way. However, I learned to appreciate certain things that the illness taught me and brought me:

• Enjoying the moment. Learning to stay in the present rather than dwell on the past or too far into the future. I still think about the future a lot but now, I envision what life will be like in five, ten, twenty years with me in it.
• Finding ways I can create a legacy for my kids. I am writing down memories from my home country, transcribing and translating correspondence between my Polish family and myself. The hope is that my kids can read it someday and learn about their heritage.
• A new hobby: gardening. Originally it was just an idea to utilize the abundance of sunshine here in California. But, creating a home garden turned into major stress relief and anti-depressant for me. I love fiddling with seeds and seedlings from late winter on, planting them into the ground, and watching them grow. And of course, I love finally enjoying the deliciousness of home-grown veggies and herbs. From seed to table, nothing can beat that.
• Friendships for life. Through group counseling, I met a wise woman who became like a family member – a surrogate mother for me, and a grandmother for my kids. (Love to you, Anne!)
• Strengthening the bonds with my husband. Our marriage has already been great prior to me getting sick. Going through this experience together added yet another level to our relationship. He is my rock and always will be (I <3 you!)

If it is still difficult to see the good in the situation, start writing a gratitude journal. It helped me a lot. Sometimes we don’t notice the beauty in everyday gestures and in tiny moments of happiness. We need to remind ourselves of them through reflection.

That’s it for now. Please drop me a note and let’s discuss cancer fear and other emotions further. Love to all!