Neuropathy and Chemo Brain: The Lasting Effects of One Nurse-Turned-Patient's Road to Recovery

Anne Llewellyn knows how to be a good nurse. For nearly 40 years, she took care of others in the Emergency Department and Respiratory Intensive Care. Her perspective of the health care industry changed a bit 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 fragmentation and duplication in the system.”

You were shocked by your cancer diagnosis. Can you tell us how it happened?

In an interview with CURE, Llewellyn discusses how she learned she had cancer, lasting side effects like foot drop, neuropathy and chemo brain, and how she is working to adjust to her “new normal.”Leading up to it everything was fine. I didn’t have any symptoms.

I had gone to the eye doctor to get new glasses, and then I went on a business trip to Las Vegas where I had to teach a course. Towards the end of an eight-hour day of teaching I had trouble visualizing the slides. I finished the course, but I struggled. When I got home I went back to the eye doctor thinking it was something with the prescription. The doctor checked me and said it was the correct prescription. He told me 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 to the hospital when I met with the neurosurgeon. I didn’t feel comfortable with him as he took a cavalier attitude that scared me.

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 was put on the schedule so the brain biopsy could be done sooner than later. Once done, 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 I had to go into the hospital. I was sick and not eating well, which left me debilitated. By the end of the 12 weeks, I couldn’t walk. As a result, I went into am inpatient rehabilitation hospital to help build my strength.

Around week five 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 have to use braces when I walk.

Aside from trouble with your feet, have you suffered any other long-term side effects?

That’s the good news and the bad news. The tumor is gone — and thank God it’s still gone. They check me every six months to keep an eye out for recurrence.I was once an editor-in-chief of a magazine. After I started to do better, I began to get more involved in activities, 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 number. They call this chemo brain and it is common after chemotherapy.

When I mentioned these changes to 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 present, those little things aren’t significant to him, but they are significant to me because I know I am not myself. That’s hard because you realize you’re not the same person you were before. I don’t think these things can be fixed, so I am working to adjust and accept this ‘new normal.’

As a nurse, someone who has always taken care of others, what was it like for you to be the patient?

I learned recently that the cancer center is introducing a survivorship program. They are doing this as being a survivor is difficult. But, when professionals recognize the challenges survivors go through, they can work with patients on how to handle those challenges. Many patients with cancer are called fighters, survivors and heroines, but when you think about it you have a loss as your life is never the same. I think doctors and the medical community look at surviving cancer as a win, which it is, but that win has a cost to it, too. I am grateful that the tumor is in remission and would not want it to be any other way as my other option would be death.In the beginning, I was not aware of what was happening. My husband was my advocate. When I started to feel better, I could ask the team questions and understand what they said.

How do you keep positive?

We learned that it was important for me to keep my own records. So, after appointments or a hospitalization, I would ask for a copy of my records and keep them in a binder. Having those records helped us answer question that would come up when the team changed. Those new to my case did not know my whole story, but having my records helped us to fill in some of the blanks that can come up. This saved duplication and even prevented medical errors.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 having the time off gave me time to recuperate.

I feel like I went through this experience for a reason, to maybe better understand what it is like to be on the other side of the bedside. Being a patient was an eye-opening experience. So, I started a blog to write about the little things that no one tells you, like why you are waiting or why your room isn’t ready and your chemo schedule is set back, even though you were on time.

What message do you have for other survivors and patients with cancer?

Sharing my experience allows me to help patients, caregivers and members of the health care team be aware of what people go through when they are a patient. I wanted to help others, but the experience has been very therapeutic for me.Keep going, but take it one step at a time. And, don’t give up. The health care industry is doing remarkable work. People who are really sick are doing better, even after relapses people can do well. But that’s what is so scary as a patient because they don’t want to see the cancer return. Today, new advances are helping so many, that we just have to have hope.