Anne Llewellyn, RN-BC, MS, BHSA, CCM, CRRN
Her perspective of the healthcare industry changed though after she became the patient. Diagnosed with a central nervous system brain tumor in November 2014, Llewellyn had to become her own advocate, along with the help of her husband.
“I never realized how hard it was for a patient and to be a patient,” she said. “There is so much runaround and duplication.”
In a recent interview, Llewellyn discussed how she learned she had cancer, lasting side effects like chemo brain, and how she is adjusting to her “new normal.”
You were shocked by your cancer diagnosis. Can you tell us how it happened?
Leading up to it everything was fine. I didn’t have any symptoms. I had recently gone to the eye doctor to get new glasses, and then I went on a business trip to Las Vegas to teach a course. Towards the end of a roughly 8-hour day of teaching, I had trouble visualizing the slides. I had to finish the course, but I was struggling. When I got home, I went back to the eye doctor thinking it was the wrong prescription. The doctor checked me and said it was the correct prescription. He thought I needed to just get used to them.
I got in my car and was driving home, but as I made a turn I hit the curb and blew my tire out. My husband arrived to help, but said to me, ‘You don’t look right.’ So, we went to the hospital and they did a CT scan—that’s when they found the tumor.
I was in a small hospital in south Florida and was told the tumor was inoperable. They had to do a biopsy to see what kind of tumor it was, and then they could decide on treatment options. I was afraid to get brain surgery in a small hospital.
A friend of mine, Marilyn, who is a nurse case manager and another friend, Kathy, who is a patient advocate, came with me to the appointment with the neurosurgeon. I didn’t like him. Marilyn took the lead and called around to different doctors. She got me into Sylvester Comprehensive Cancer Center in Miami.
At this point, I wasn’t really coherent. I wasn’t in my right mind. They did a brain biopsy. Then chemotherapy began right away. It was an aggressive treatment. But after the third round of chemotherapy, the tumor was gone. We were shocked.
I still had to finish the chemotherapy, so I had 12 weeks of chemo. That was difficult because you’re sick and not eating well. You get debilitated. By the end of it, I couldn’t really walk. I went to rehab to help build my muscles back up.
Around week 5 of chemotherapy, I had no reflexes in my feet. They believe it may have been from the vincristine, a chemotherapy agent that is known to cause neurotoxicity, so they had to take the vincristine out of the mix. That caused me to have nerve damage in my legs. I now have foot drop and neuropathy in both of my feet and use braces when I walk.
That’s the good news and the bad news. The tumor is gone—and thank God it’s still gone. They check me every 6 months to keep an eye out for recurrence.
Aside from trouble with your feet, have you suffered any other long-term side effects?
As I try to do more things, I have noticed a little chemo brain. I was once an editor-in-chief of a magazine. After I started to do better, I began to get more involved, but I noticed I was making a lot of mistakes. I’d forget appointments. For instance, I gave out someone else’s conference number to a person I set up a call with. Then, when the person called me, I didn’t remember that I had even given them the wrong number.
When I told the doctor, he said, ‘Well, you did have brain surgery, you did have strong chemotherapy and you’re not 40.’ What I think now is because my tumor isn’t there, those little things aren’t significant to him, but they are significant to me because I know that’s not like myself. That’s hard because you realize you’re not the same person you were before. But it’s also not anything anyone can fix. I call it my ‘new normal.’ I am more conscious now of writing things down.
I am on the patient and family council at the cancer center. They are now introducing survivorship groups. It’s hard, because it’s not your normal life, but you are surviving. How can we adjust to it? They call us fighters, survivors, heroines, but when you think about, it you have a loss. Your life isn’t the same. I think doctors and the medical community look at it as a win, which it is, but it has a cost to it, too. I wouldn’t want it to be any other way; the other option would be death.
As a nurse who has always taken care of others, what was it like for you to be the patient?
In the beginning, I wasn’t too with it. My husband was the advocate. But when I started to feel better, I could ask them questions and understand what they said. I knew if they weren’t telling me the truth. Or, if they couldn’t answer my question, I’d say ‘let’s get the doctor then.’
It is so important for patients to keep their records and get records from appointments after visiting different hospitals, because your cancer team can change a lot. They may not know the whole history.
How do you stay positive?
I wanted my life back. I don’t want to be a patient forever. Also, I knew that I had opportunities. I lost my job as a result of this, but it gave me time to recuperate.
I feel like I went through this for a reason, to maybe understand that other side. Basic things that no one tells you, I could get out in my blog and help other people. It is very therapeutic.
People who are really sick are doing better, even with relapses—that’s what’s so scary as a patient—but today, with the science that we have and the talent that is out there, they can address a lot. Keep going one step at a time, and don’t give up. Today we are doing remarkable work in healthcare.