Lessons from a Cancer Patient During a Global Pandemic

Written by: Kate Williams

One of the things that cancer patients talk about when they get together is where they were when they “got the call.” The call that turned life upside down. The call bearing the worst health news you could imagine. Absolutely nothing prepares you to hear “you have cancer.”

It is a seismic slap. You stumble from the force. The shock almost knocks the wind out of you. The sting remains. Time passes. Your body remembers. Apprehension sets in when you think of it.

Cancer is traumatic.

My cancer diagnosis was unwanted, unwelcome, and uncontrollable. I ache for my life before cancer so deeply that my heart physically hurts. The trauma thrust upon me by my cancer diagnosis is at times physically and mentally paralyzing. Each day I force myself out of bed and face my new reality. In order to survive each day in my new life I was compelled to let go of what I expected my life to be this year. It’s a daily chore. I trained myself to face the world each day with a smile on my face and hide the isolation that is cancer as a young adult. The pain is dulled at times, but the wound is still fresh. And deep.

Having a cancer diagnosis dumped into my lap was coupled with two big emotions that I am still learning to live with and manage effectively in my life: trauma and grief. To cope with cancer, I have had to mourn my old life, the life I had before diagnosis. The expectation that I would spend this year bonding with my sweet baby with a full head of hair while seamlessly working and mothering was ripped from me. I had to let go of the plans I had to indulge my children this year. The idea that I had worked and saved and could finally relax a little with my family now seems so foreign that it could be someone else’s life.

The trauma of this diagnosis is the everlasting feeling that I allowed myself to be so deliriously happy, and this demonic disease caught me off guard. The seismic slap came out of nowhere. If I ever let my guard down again, another big slap could be waiting, lurking, ready to hit me at any time. The anxiety that comes from this trauma is persistent. Headaches used to be headaches. Maybe the indication that I drank one glass of wine too many the night before. Now, a headache might be a sign of metastases to the brain.

As cancer patients, we are forced to accept that life is unfair. Our lives have been upended by brutal changes. We are expected to accept this stroke of misfortune and put forward a positive outlook for our friends and family. We cannot tell them about our anger. They should not see how deeply we are truly suffering. We have to manage our torment and manage their feelings because our pain, justified and decadent as it may be, is a buzz kill.

We have to learn to view our existence through a new lens. Devastating but true, there is no return to life before cancer. Cancer patients learn to move forward. We learn to connect to others with similar experiences. We learn to thrive. We learn to survive.

As if cancer was not enough, I, like every other human across the world, am watching in horror as this pandemic is forcing humanity to grind to a near screeching halt. In an effort to stop the disease from spreading we have all been asked to give up life as we know it, at least for a while.

I watch the world recoil as the pandemic changes our human experience and somehow I remain eerily calm. I feel like a spectator watching humanity adapt to a new reality. I am not in the fishbowl this time, not the recipient of pity stares and cancer word vomit.

Reactions of my friends and family to these grossly unwelcome changes presents a bouquet of emotions that are oddly familiar to me. The anxiety of the unknown. The stress of loss of income. The social and mental isolation. The grief for what the year 2020 should have been.

The consequences of humans staying home for a few months and not safely being able to gather in large crowds are sweeping. Brides and grooms are cancelling weddings. High school seniors are missing their proms and graduations. Families are separated from their loved ones in long term care facilities. Folks who never considered themselves to be “old” are finding themselves lumped into a population deemed particularly vulnerable to the disease. Restaurants are closed. Rent cannot be paid. Retirement savings are dropping again for nervous savers who just got back on their feet after the 2008 crash. Jobs are lost. Money is tight. Stress is consuming.

Humanity is experiencing trauma. Humanity has been slapped and is struggling to recover from the shock.

And yet, humanity seems to be having a very hard time accepting how profoundly unfair life is.

The grief that our friends are experiencing for their old lives, cancer patients know well. We know that life is not a guarantee. Like us, people have been forced to make changes, difficult and uncomfortable changes, changes that affect their mental health, finances, free time with children, happiness, and self-worth. Lives will be forever altered. The trauma from this pandemic will be etched on those of us able to recall it.

Considering the silent and positive heroism Americans expect from their cancer patients, American reaction to these changes has been a mixed bag. Some people can accept that life is not a guarantee. Some have lived misfortune and know it does not discriminate. Some use the grief for what this year could have been and attempt to create a collective force more powerful than an invading threat. Some even find it patriotic and pitch in to help in any way they can, harkening back to a time when Americans proudly fought a common enemy. Folks across the country are donating time, materials, and even a “Rosie the Riveter” effort to aid our beleaguered health care workers.

Others find it beneath their “liberty” to adapt to changes that will save lives. People are angry about the effects on their income. On their assets. On the economy.

Of course, these changes are overwhelmingly unfair. It’s unfair to lose income due to a viral outbreak. It’s unfair for life as we know it to change. It’s unfair to ask everyone to stay home to protect those who are more advanced in age or immunocompromised. There is serious trauma in job loss. There is serious trauma in being broke. There is serious trauma in not being able to pay bills. I have been there, and the scars are seared in my consciousness.

Society will be traumatized from the severe economic, social, mental, and physical costs of this outbreak, and the effort to quash it.

But it is criminally morbid and cruel to suggest that “life should return to normal” for the sake of “the economy” before the viral threat has passed. It comes with a cost: American life.

I am stunned, angry, and deeply hurt at this suggestion.

There are thousands of scared cancer patients across the country who have already been dealt a hand that is profoundly unfair, and now we have to watch, fighting for our lives, while people selfishly complain about “the market.” Treatment plans have been changed, chemotherapy regimens are delayed, surgeries are rescheduled. Patients with otherwise treatable cancers will die and patients who would have passed peacefully surrounded by loved ones will die alone.

Folks without compromised immune systems who level these complaints perceive themselves to be somehow superior. Even if by the random stroke of fortune. These folks fail to consider that a seismic cancer slap can happen to anyone, anytime, anywhere. Cancer does not care.

When I was first diagnosed, people practically fell over themselves to show support to let me know I was loved. But in the time of a global pandemic my life has suddenly become a mere economic cost. A sacrifice at the feet of the almighty market. Capitalism comes with a cost and if lives of the immunocompromised and elderly are one, so be it.

Instead of hustling back to work and casting us aside, there is wisdom in the experience of cancer patients. The helplessness, grief, trauma, and anxiety that people are experiencing with Covid-19 has already taken host in our lives.

Most importantly, don’t take any of the advice you have given us. As a cancer patient, I have been told to “BE POSITIVE” more times than I can count. Despite my urge to hold a mirror back to everyone who has ever told me this, cancer has educated me that hollow advice should be spared. It vastly oversimplifies the experience of trauma and grief to just wax positive over the pain.

Instead, understand that we choose how we respond to this experience and how it will shape our lives going forward. We have every right to be angry, but let the anger ignite a fire that propels us forward.

We have to learn to view our existence through a new lens. Acknowledge the trauma. Air it out because holding it in is even more difficult.

Devastating as it may be, there is no return to our lives before this global pandemic. The change is unwelcome and unwanted, but it is here. We need to learn to move forward. We are so fortunate to be able to connect to others and share our experiences. We will learn to thrive during the pandemic. We can and will learn to survive.

Perhaps we have the misfortune of living in a time with a global pandemic. But perhaps we have the foresight to see that these changes are not the death of us. We are survivors.

Author’s note: The photo at the beginning of this piece is of me in the middle of chemotherapy. At the end of four vicious rounds of AC chemo, I went on a little trip with friends. 2020 was not the year I expected, but I have still been able to have fun. I encourage you to do the same.

 

For more about Kate, please visit her blog: https://www.mskatedecorates.com/cancering/2020/4/2/lessonsfromacancerpatientduringaglobalpandemic

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