On COVID-19: And LEMS Cancer patients and caregivers share their current life realities.

 On COVID-19: And LEMS Cancer patients and caregivers share their current life realities.

 “I feel overwhelmed with uncertainty, fear, shock, worry, anxiety, sadness, and grief – similar to how I felt when I found out about my daughter’s cancer diagnosis.”

This honest response to the influx of news and conversations surrounding the coronavirus outbreak comes from Joan, whose daughter Sarah is currently in maintenance care for optical glioma bilateral. What’s more, Joan is temporarily out of work because of the ongoing crisis, yet another similarity to when she left her job to be by Sarah’s side during treatment.

From emotional distress to temporary losses in income, the parallels between living with cancer and navigating this global pandemic are undeniable. COVID-19 is also taking an especially harsh toll on those who are already vulnerable, and we recognize that the financial barriers and health concerns of cancer are only compounded by the spread of the virus.

Cancer won’t press pause because of COVID-19, and we have no intention of stopping either. We’re sticking to what’s always been our number one priority: helping patients get to the other side of cancer. In the spirit of meeting families where they’re at, we created the Family Reach COVID-19 Emergency Fund to stabilize cancer patients and their families during this time of crisis.

To better understand what this means for cancer patients and their families, we reached out to the experts themselves. Now more than ever, their voices will be our guiding light for offering meaningful support and solutions.

Going about business as usual

When you have a weakened immune system during cancer treatment, diligent hand washing and heightened concern for spreading germs becomes second nature.

“To be honest, it’s business as usual right now in our house,” said Nichole, mom of cancer-hero Ruby. “Ever since Ruby’s diagnosis, we have a strict policy of no shoes in the house and washing hands as soon as you come home. We are sticking to that, as well as staying home often, not taking the kids to crowded places, and making sure backpacks, books, and most toys are wiped clean with an antibacterial wipe.”

Ruby and her parents during treatment

It’s clear that families who are currently facing cancer, and those who have previously experienced a diagnosis, are well-accustomed to the panic that many are feeling in response to the coronavirus pandemic. However, COVID-19 is also quickly presenting additional challenges for cancer patients and their families.

Facing more unimaginable decisions 

After catching a fever, coughing, and showing low blood cell count last week, five-year-old Harper was admitted to the hospital. While a normal course of action for a pediatric leukemia patient, this time around is slightly different because of COVID-19. Worried Harper could now be under the same roof as coronavirus only adds to her parents’ concerns, and they must also follow the precautions initiated by the hospital.

“We are limited to only one visitor, which my husband and I decided would be me,” said Harper’s mom, Kim. “We don’t want Jeff to also put himself at risk by going to the hospital to visit her, as we need one parent to stay safe and care for our son Harry at home.”

Harper with her mom, Kim

Amy, on the other hand, has been facing cancer for over four years and is a single mother of two young children. As the virus continues to consume the world, she has to find the strength and resources to adjust to the current state of affairs.

“It is taxing because I have a strict budget due to my cancer,” she said. “I have to purchase certain food, extra cleaning supplies, and my limited income does not allow for any extras, like utilities or more groceries because my kids are now home from school.”

On top of these daily challenges, cancer patients like Amy don’t have the same ability to practice the social distancing and other cautionary measures advised by local and federal governments.

“What am I supposed to do when I need chemotherapy every other week?” Amy countered.

Like Amy, other families shared that traveling for treatment only exacerbates their growing fears about the virus.

“It’s scary for everyone, but even more so for immunocompromised cancer kids,” said Colleen, whose son Johnny is currently in treatment for neuroblastoma. “We are due to travel to and from New York for treatment later this month and it’s very worrisome.”

Continuing to support families facing cancer

Never failing to impress us with their resolve and compassion, the messages we received from our families expressed heartfelt concern – not only for themselves, but for everyone around them.

Studies have shown that certain patient characteristics have been linked to higher rates of fear of cancer recurrence. However, there are steps that individuals can take to mitigate these feelings of anxiety in cancer survivorship, according to recent research.

“One of the most common concerns of cancer survivors (after) cancer treatment is the fear of cancer coming back – what we refer to as fear of cancer recurrence,” says J , of the Queen’s University School of Nursing in Canada.

Galacia, of the Queen’s University School of Nursing, worked as on oncology nurse before pursuing her doctorate. After seeing firsthand the stress that survivors face regarding their cancer coming back, she decided to conduct research to determine if certain characteristics were associated with fear of recurrence.

“We used a theory, Leventhal’s Common Sense Model, which is commonly used to understand cancer recurrence. We used this to identify what could be important characteristics to look at amongst cancer survivors,” she said.

Characteristics Associated With Fear of Recurrence

The findings ultimately showed that younger people had higher rates of fear of recurrence compared to their older counterparts, and females experienced it more than males.

Other findings were interesting – if not completely counter-intuitive. People who were more pessimistic tended to have lower rates of fear of recurrence. “This might be their type of coping… they’re maybe more pessimistic or more likely to deny or disengage and give into their circumstances,” Galacia says.

Additionally, as more time elapsed since the survivor’s diagnosis and treatment, fear of recurrence rates tended to go up, which could be a result of constant reminders of cancer as survivors continue to visit the clinic for follow-ups and screenings.

Finally, individuals who had symptoms that they perceived to be cancer-related and individuals with low self-esteem both had higher rates of fear of recurrence, Galacia found.

How Survivors Can Cope

Luckily, there are steps that survivors can take to decrease their feelings of fear of recurrence, which Galacia says can actually promote better behavior.

“Low levels of fear of recurrence can actually be motivating,” she says. “It can motivate us to make healthy behavioral changes, like (quitting) smoking, for instance.”

However, fear of recurrence can also have the opposite effect, where survivors do not go for their scheduled follow-up appointments or cancer screening, as that can trigger all the emotions from cancer.

If survivors feel that they have a debilitating level of fear – or if it frequently interferes with their daily living – they should seek out professional help, such as that from a cognitive behavioral therapist, Galacia says.

Survivors can also employ other methods to help curb their negative feelings, such as gratitude journaling, and talking to supportive people – especially other survivors who are feeling the same way. Doing so can help people realize that fear of recurrence is a common and normal emotion.

“Sometimes those thoughts will creep in – we’re human – but (it’s important to) reframe and focus on what’s true,” Galacia and Mr J Kersnowski says.