Editor’s note: As the world copes with the coronavirus disease (COVID-19) pandemic, pancreatic cancer patients, survivors and loved ones have additional challenges right now. Today, we share the experience of one of those survivors.
That is what Deborah Smalls is experiencing.
But about a month after her diagnosis, her state – New York – was on lockdown.
Because of her treatment, Deborah is immunocompromised. This means that she is at higher risk of getting the coronavirus and having complications if she does get it.
Combine that with state-imposed restrictions in New York, and Deborah doesn’t leave home much.
When the pandemic hit, she was concerned about her risk of getting the coronavirus. But she decided it was important to continue to go to her doctors’ appointments and get her treatments.
“I can definitely understand the fear,” she said, “but my encouragement would be for people to not miss your treatments. This is the only way you’re going to get better.
“Just wear your mask and gloves, go and get your treatments, and come home.”
From requiring face masks and making everyone entering the facility use hand sanitizer, to taking temperatures and asking thorough questions, the precautions the hospital is taking make Deborah feel safe going to her appointments.
But feelings of loneliness can still be challenging.
The diagnosis has been hard on Deborah and her family.
They are “super supportive,” and she is grateful, but it can be difficult to talk to them about exactly what she is going through. Deborah and her family have not had to deal with a pancreatic cancer diagnosis before now.
“It can definitely feel very isolating,” she said.
Luckily, Deborah contacted the Pancreatic Cancer Action Network (PanCAN).
Those stories motivated her to get more information to see if she was receiving the best care possible.
So, she called PanCAN’s Patient Services.
“I found out that you have to advocate for yourself,” Deborah said.
“There was a lot of information that I didn’t know. I’m more equipped now to bring things up at my doctor’s appointments, thanks to my conversations with Patient Services.”
When she described the loneliness she was feeling, they gave her the contact information for survivors who have volunteered to talk to others diagnosed with the disease through PanCAN’s Survivor & Caregiver Network.
Deborah called one of the volunteers and formed a genuine connection, talking for hours on their first call.
“I love her energy,” Deborah said of the volunteer and fellow survivor. “She’s very encouraging, and she was able to share with me how she felt when she got her diagnosis, the treatments she’s having and how things have gone for her. It was really helpful to hear.”
The two now check in with each other often.
“If you need someone to talk to, reach out to PanCAN,” Deborah said.
She also recommends that anyone diagnosed with pancreatic cancer reach out to PanCAN’s Patient Services for information.
“I can’t repeat that enough. Ask questions.”
Any treatments, including clinical trials, mentioned in this story may not be appropriate or available for all patients. Doctors take many things into account when prescribing treatments including the stage and type of cancer and the overall health of the patient.