‘Be your own advocate’
BROKEN BOW - Tammy Hendrickson, who was diagnosed with breast cancer in January, 2019, has not had an easy time during treatment. There has been lack of communication between medical providers, not enough information to keep Hendrickson fully informed and movement of a needle during a biopsy which caused a hematoma that for several terrifying days Hendrickson thought was a fast growing tumor. There were multiple issues throughout the year that didn’t fit the standard of problems and eventually she landed in the hospital fighting a staff infection.
Now, a year after radiation and six months since her last infusion, Hendrickson is channeling her frustration into a positive direction to help others. She’s in communication with at least three other cancer patients in various stages of treatment. “I’ve been talking to them,” she said, “Sharing their general questions.”
One of the questions Hendrickson was recently asked was “My hands and feet feel hot. Is this normal? I wasn’t told this was possible.” Hendrickson shared that she experienced tingling and numbness as well as feeling hot but that it all stopped when the infusions ended. This is information she readily shares with other cancer patients. “I give them realistic info,” she said. “They’re asking what to expect. With what I went through, one doctor said, ‘You are the rare case where everything is not standard and all reactions are happening to you.’”
Hendrickson acknowledges that not everyone’s reaction to treatment is the same, yet the information she was provided was minimal to nonexistent. Preparing for her first chemo, she asked what side effects to expect and when to expect them. The answers she received, “I don’t know” and “I can’t tell you,” were frustrating for her and her family. The only guaranteed side effects were fatigue and hair loss. During her first infusion, she was asked to fill out a survey of how she was feeling and what she was experiencing; the tingling sensation wasn’t on the list.
One thing she emphasizes to others in treatment is the fatigue. She learned she had to conserve what energy she had. “I couldn’t use all the energy for a day in ten minutes,” she said.
Another important message to those with cancer is to not settle for no answers. “There are answers for everyone,” Hendrickson said. “Be your own advocate.”
Hendrickson encourages others to maintain their own medical records and carry copies to appointments with the different specialists. By doing this, Hendrickson was often able to give a provider information they hadn’t yet seen due to lack of communication between departments. Also, keep a journal of your symptoms, treatment and side effects. “Every day, each day and what helps you treat the symptoms,” she said.
She emphasizes that her local health care providers in Custer County were very supportive and the difficulties were with those who treated her specifically for breast cancer. “My most helpful doctor has been my PA, Physician Assistant, but I say ‘Patient Advocate,’” she said.
One of the individuals she had conflicts with was a radiation doctor and it raises the question that if things were bad, why didn’t Hendrickson go to another facility. She says she considered it.
“I knew I had to go through radiation,” she said. “I had a talk with him. I told him I could go somewhere else. He became nicer after that.” She said it was while she was on the treatment table and then again afterwards that she and her husband were lectured for asking questions. Hendrickson filed a complaint and as a result, the facility manager sat in on all future appointments with this doctor.
Hendrickson lodged two separate complaints. She was sent a letter of apology, an apology that the hospital missed the opportunity for a favorable first impression and no follow up. When that person retired in September, Hendrickson contacted their replacement the very next day.
As a result of that contact, Hendrickson was invited to speak to about a dozen department heads at the medical facility where she was treated. “It was emotional but I held it together,” she said. She was asked
if her experience has made her fearful. “Yes, I have doubts about every medical person,” she said. “It set the tone for disbelief.”
After sharing her story, she asked each person in the room what should have been done differently and she didn’t want the same answer from more than one person. One individual, the only man in the room, told her, “We broke the first rule, Do unto to others as you would have them do unto you.”
As a result of Hendrickson sharing her experience, one of the facilities is voluntarily changing their admissions information so that patients are more informed about what treatment entails and what they can expect.
Hendrickson isn’t through with her treatment. She says her doctors won’t yet use the “R word” (remission) with her though right now she doesn’t have any signs of cancer. She has five more years of maintenance treatment which is expensive and much of the insurance help drops off once out of active treatment. Yet she is hopeful. She became a grandmother last year and is planning on seeing her granddaughter grow up.
She wants to do what the cancer facility failed to do for her, that is, to treat others with the honesty and directness she wanted and encourage others to speak up for themselves. She doesn’t share her story to scare others or turn them away from treatment, rather, she wants people to know they can find support and know they aren’t alone.
“It’s nice to have people to talk to. You find you belong to a network, a club,” Hendrickson. “It will not change what’s been done to me but I’m damned if anyone else has to be treated like this.” Visitors at the Custer County Museum are asked to wear masks, says Director Tammy Hendrickson. “I look fine but I still have to be cautious on lung issues,” she said. “I worry about pneumonia and other things.” Pictured above (without mask for a quick photo), Hendrickson no longer wears a wig as her hair has grown back after chemo. “I took my wig off on Leap Day, Feb. 29,” she said. “The first time I went out in public I felt naked.”