Jessica Territo

When facing serious medical difficulties, patients with cancer encounter a multitude of stressors that can take both a physical and emotional toll on the individual patient, as well as on members of their support system. Oftentimes, patients and caregivers must make difficult decisions with limited data, must reconcile conflicting medical opinions, and must filter out the “noise” of advice and anecdotal evidence from family and friends.

The experience can be isolating and frightening, with medical and mental health professionals often failing to recognize or properly address the psychosocial needs of the patient and caregiver. Although the growth of survivorship programs are encouraging, support services are still desperately needed and the widespread impact of COVID-19 provides more insight into what patients and families find helpful.

Since COVID-19, our entire world has experienced the paralyzing uncertainty and fear that comes with facing an unpredictable medical challenge. We have seen how it has crippled nations, overwhelmed healthcare systems, devastated educational practices and decimated economies across the globe. We have witnessed, as individuals and as a society, the complications of having incomplete information: the struggle to make decisions based on fluid, incomplete, or even biased data and the franticness of wanting to find answers to serious medical problems. People want reassurance that their symptoms are not COVID-19, even when mild to moderate cases were simply isolated at home. If people were to self-quarantine regardless of the test result being falsely negative, then they simply wanted to know for their own piece of mind.

It was meaningless in terms of a treatment standpoint. People began to recognize the anxiety-reduction component of having 24/7 medical information, as around-the-clock virtual medicine exploded beyond simply a way to avoid exposure when seeking treatment. The desire and usefulness of being able to track symptoms and triage when it is important to call a provider or seek emergency treatment became evident.

Hospital systems and insurers have developed their own platforms and their own informational messages for consumers, and these platforms have not only provided medical success but anxiety reduction. COVID-19 has led to widespread social isolation as a societal preventative measure, and patients facing a COVID-19 diagnosis are either isolated within their household from other family members or isolated more completely within hospitals.

Those who have recovered from active infection often talk of feeling further isolated because of feeling ostracized from their communities and misunderstood because of lingering physical symptoms. People struggle with the open-endedness of the pandemic and the uncertainly about when “normal” life will resume and the likelihood that some aspects of “normal” life will be forever changed. People are examining their relationships, their marriages, their careers, their views on education, and other major areas as they struggle to find meaning.

These challenges highlight those encountered by people on a “health-related” precipice and might be easier for most to understand now that societally we have experienced a glimpse of these challenges. We can also reflect on how some of the COVID-19 changes may generalize to other medical stressors. Some suggestions for patients, caregivers and medical and mental health professionals are summarized below:

Lack of complete information: Expand patient access and centralize medical records; increase the role of a “Nurse Navigator” or medical “point person” to oversee complicated cases with multiple medical providers to increase the likelihood that treatment is unified

Access to timely medical information: Provide online tools to allow for symptom tracking and interaction with physicians’ offices, medical “point” person, or urgent care

Effective psychosocial support: Reducing isolation through individual or group support; mental health check-ins incorporating mindfulness, finding meaning, and sense of togetherness

With these lessons in mind, not only will cancer care find a way to come back stronger but all of healthcare as well.

Articles

In the wake of the COVID-19 pandemic, many of the serious medical difficulties patients with cancer face has been brought to the forefront for healthcare as a whole. But we can learn lessons from these challenges and find a stronger path forward.

Lessons from COVID-19: How to Support those Facing Serious Health Challenges Like Cancer

Having lived through dangerous hurricanes and cancer treatments, sometimes even simultaneously, I have witnessed firsthand the devastation that is left in the wakes of both of these traumatic events and see many parallels between the two that those who have not experienced cancer might miss.

Growing up in South Florida, I’ve become a bit desensitized to the risks involved with hurricanes, growing complacent with the confidence I’ve placed in our impact windows and shutters, strong building codes, and other safety and comfort measures. Other than a few slightly more anxiety-fueled preparations of trying to find gas and driving from store to store looking for water, I’ve generally approached hurricane season as I would any “predictable” event.

Yet when a massive Category 5 storm appeared to be headed straight for us, we faced a “monster” like we had never experienced, and our whole community became rattled. Not only were events scheduled during the timeframe of the potential landfall of the hurricane canceled, but also events leading up to the hurricane’s arrival were also canceled to allow people time to prepare. All anyone talked about was the hurricane. News coverage was relentless. People couldn’t eat or sleep. Normal routines were pushed aside. Mental health experts were incorporated into news coverage to discuss ways to handle the anxiety. People reached the point where they didn’t care if we were hit by the hurricane or not. They just wanted the anxiety and uncertainty to end.

Let that sink in for a bit: people felt more distress about waiting to see whether the storm hit them than they did weathering an actual catastrophic hurricane. People just wanted to get back to “normal life”.

This hyper-focus, sense of impending doom, and state of “limbo” that partially paralyzed our area despite all the meticulous preparations felt eerily familiar to me.

This is how I felt facing a cancer diagnosis: 

How can I focus on anything else when this medical crisis is looming? Even with all the safety measures I have undertaken, I am still at risk. If only I knew what would happen, I could plan better. The waiting is painful. Just get this over with already. I can’t take it anymore. 

All of the attempts at prediction and safety measures cannot guarantee safety. Models can attempt to predict, but in the end, as we’ve seen in the past, Mother Nature sometimes has her own plans, just like cancer does. Sometimes we are spared; sometimes we aren’t as fortunate. If you don’t like the uncertainty of living with the knowledge that a hurricane is churning out in the ocean and might be headed your way, imagine knowing you have something wrong with your body that may never be fully cured: a constant hurricane season, never knowing what disturbance might turn into a dreaded Monster Category 5 storm, with you in its path.

Except with this “storm” approaching, you will not be able to evacuate, and you cannot simply hunker down. You must go out and about, handling aspects of daily life, attempting to live as you would without the ominous threat of storms that could strike at any time and obliterate your world. However, unlike with a hurricane, you feel alone because there is not the constant surveillance, continuous information by droves of experts, community-wide respite from daily stressors because of activities canceled, or the “we’re all in this together” mentality.

Instead, I am left to calm myself through reminders that I have my own “meteorologists” attempting to predict whether a “hurricane” might reach me and advising me on how to best fortify to sustain any "rough weather” headed my way. I have dear friends and an amazing family who have metaphorically helped me reinforce my home, stock my pantry, and fill my tank, and ones who would go above and beyond to assist with cleaning up the debris and rebuilding if a medical crisis strikes.

Meanwhile, since I’m not under the ominous “Hurricane Watch” at the moment, I will gratefully get back to being present rather than wasting any more time trying to measure the winds or determine whether I remain in the projected “cone of concern”.

"Having lived through dangerous hurricanes and cancer treatments, sometimes even simultaneously, I have witnessed firsthand the devastation that is left in the wakes of both of these traumatic events and see many parallels between the two that those who have not experienced cancer might miss."

Jessica Territo

Lessons from COVID-19: How to Support those Facing Serious Health Challenges Like Cancer

Hurricanes and Cancer

Latest News