Pediatric Cancer Survivor Shares How ‘Perspective Is Everything’

Cancer gave Kelsey Tainsh something many of us don’t have until it’s too late—perspective. One of the greatest gifts life can provide us with, regardless of health status, is a perspective on the beauty in our lives, Tainsh explained during her keynote address at the Hematology/Oncology Pharmacy Association Annual Conference 2023 in April.

Kelsey Tainsh speaking at HOPA 2023 ©Kelsey Tainsh

“I think it’s all about our attitude [and] all about perspective,” Tainsh said. “When we change our attitude [and] our perspective, we can change the way we react to things.”

Tainsh received a diagnosis of brain cancer when she was 5 years old. On June 14, 1996, she had surgery to remove the brain tumor. For 10 years, she lived like a normal kid, participating in sports, hanging out with friends, and getting to grow up. However, when she was 15, the tumor came back. In an odd sort of kismet, she had it surgically removed on June 14, 2006—the same month and day as her prior surgery.

When she came out of surgery, she awoke to learn she had had a stroke. With the right side of her body paralyzed and her mouth unable to move, she felt trapped inside her mind. Tainsh became paralyzed with fear and self doubt. During her address, Tainsh looked back on this period, which she described as some of her worst days—she felt speechless, stuck, and sorry for herself. She asked the audience if they knew the feeling.

“You go to work one day, maybe at the pharmacy, and you’re having the worst day ever,” Tainsh said. “You don’t think that things can get any worse, and then you come back the next day and things get worse. And then they mess up your mocha latte at Starbucks.”

After a chorus of laughter erupted from the audience, she went on to explain that perspective makes all the difference—someone’s worst days may still be better than others’ best days.

After Tainsh’s second surgery and stroke, recovery seemed out of reach—but recover she did. Her recuperation was bolstered by teams of dedicated nurses, pharmacists, doctors, and family members who stood by her side, although many of her friends did not. To this day, Tainsh’s parents remain one of the biggest influences on helping her find perspective on her experiences. They ingrained in her the mantra that things can always improve; everyone has a chanceat success.

Today, Tainsh, at the age of 32, is still unable to use her right hand because of the stroke, but during an interview with Pharmacy Times, she opened a water bottle with her mouth and joked that it has become like her second hand.

Tainsh noted that a pharmacist can play a significant role in a patient’s story, even after the patient overcomes cancer. This was (and is) the case for Tainsh. During an interview with Pharmacy Times, she explained that she continues to take a variety of medications. When out of the blue a few years ago her insurance stopped covering a medication that would cost several thousand dollars out of pocket each month, a community pharmacist stepped in and helped her obtain a scholarship to cover the cost of the medication.

“I think what patients want more than anything is [for someone to] understand what they’re going through, to [show them] all the options that are out there, and to have people on their side, just like that pharmacist did for me,” Tainsh said. “She was on my side.”

Tainsh explained that pharmacists can do so much to help patients with cancer cope with their diagnosis and keep some of the fear and anxiety they experience at bay.

“[Pharmacists] can encourage the patient to keep their attention on the present—[to try not] to project what their future will be,” Tainsh said. “This may help [patients with cancer] better approach their diagnosis and contribute to patients accepting their diagnosis.”

Tainsh went on to express gratitude for her care team and the empathy they showed her. When asked what empathy in the health care setting looks like, she explained it can be as simple as having a doctor know her name—her first name.

It can also be beneficial to hear health care professionals validate the magnitude of the experience of cancer for patients. Although many members of patients’ cancer care teams have not experienced cancer themselves and encounter patients with cancer in the day-to-day of their professional lives, Tainsh explained that having an empathetic care team that is engaged with her experience of the disease and acknowledges and validates its magnitude is invaluable.

“Cancer is a big deal,” she said.

Tainsh explained that after these experiences, it’s the idea of gratitude, or the act of appreciating all the good in her life, that has propelled her to where she is today. During her keynote address, Tainsh noted that looking back on her worst days, she did not want to spend the better part of a year fixating on what she had lost or did not have.

She explained to the audience of pharmacists her wish for them to take heart in the beauty in their lives and the world around them. Mercifully, she is alive today to tell others her story, she said.

Tainsh shared that she knows how much she has grown after these experiences. She no longer wonders what her life would be without the cancer and stroke because without them, she would not have the job she loves today that allows her to travel the world toshare her story and help make a difference in people’s lives.

Tainsh told Pharmacy Times, “If you were to give me a magic wand and tap it on my shoulder 3 times and ask if I would go back to not have a brain tumor or stroke, 9 out of 10 times, my answer is going to be ‘no’ because of what I’m grateful for.