Liver Cancer

Caregiving

As a caregiver for someone with liver cancer, you are about to take on many new responsibilities. If you feel unprepared for this role, you’re not alone. Few people believe they have the training necessary to be a caregiver. And if you aren’t familiar with liver cancer, your new role may be even more challenging. These suggestions may help.

Liver cancer is often referred to as a disease within a disease, which means your loved one will be treated for both liver cancer and the underlying condition that contributes to it. That may mean more medical appointments, multiple medications and many side effects.

Learn as much as you can about this diagnosis. Ask your loved one’s doctor to help you be aware of what to watch for.

You will be a valuable asset in many ways:

  • Scheduling and transporting to frequent medical appointments.
  • Taking notes during doctor’s appointments.
  • Tracking and possibly giving medications and ensuring they are taken as prescribed.
  • Monitoring for signs of infection and other complications.
  • Managing treatment-related side effects.
  • Caring for drains and ports, if applicable.
  • Preparing nutritious food that helps the liver work more efficiently.
  • Recognizing jaundice and/or cognitive issues that are caused by a buildup of toxins if the liver is not functioning adequately.
  • Ask the doctor what to watch for, and be aware that as liver cancer progresses, symptoms will change.
  • Communicating with the multidisciplinary health care team in person, by phone or through an online portal. Make sure your loved one has added you as a person with whom the medical team may communicate about your condition.
  • Updating concerned family and friends.
  • Offering emotional support, and seeking it for yourself. The stigma surrounding liver cancer increases the caregiver burden considerably. Because liver cancer is sometimes linked with risky lifestyle choices such as viral hepatitis or alcoholism, you may feel embarrassed or even worse, ashamed. Regardless of your loved one’s circumstances, no one deserves a cancer diagnosis, and neither of you should carry that emotional weight. It is important to connect with other caregivers in the liver cancer community, online or locally. They understand what you’re going through, and they may be an incredible source of support. Ask your health care team and use the resources here to find an advocacy group.

Why You Need To Treat Others The Way You Want To Be Treated

By Andrea J. Wilson, President & Founder, Blue Faery: The Adrienne Wilson Liver Cancer Association

When my 15-year-old sister Adrienne was diagnosed with Stage IV liver cancer, I was devastated. I was Adrienne’s legal guardian, and I had raised her from the age of eight. The following story is an excerpt from my memoir “Better Off Bald: A Life in 147 Days.”

The Support Group

Every week, Teen Impact met at the hospital. Their mission was to improve the quality of life for young adults with cancer. I encouraged my sister to attend one meeting, and she agreed to shut me up.

I told her, “We’ll walk in. If you hate it, we’ll walk out.”

She frowned.

We found the meeting in a large room where chairs were positioned in a circle. Many teenagers had already arrived. We sat in the two chairs closest to the door. A woman encouraged everyone to introduce themselves.

“We have new people here today,” she said. Adrienne glared at me.

Most of the kids had leukemia. An upbeat, 16-year-old Hispanic girl had a tumor in her thigh. She sat in a wheelchair next to Adrienne.

When it was her turn, Adrienne whispered, “Hello. My name is Adrienne.”

Some kids responded with an enthusiastic “Hi Adrienne.”

Adrienne ran out of the room in tears. I apologized and left too. Farther down the hall, I found her sitting on the floor, knees tucked into her chest, shaking and crying.

“Don’t make me go back,” she said.

I had pushed her too hard. She did not need or want a support group. I did.

Between sobs, Adrienne said, “I can’t be around other sick kids. It’s too depressing.”

The Lesson

The golden rule – to treat others the way we want to be treated – does not work with cancer. With Adrienne, I learned to treat her the way she wanted to be treated. When her desires conflicted with mine, I would remind myself I wasn’t the one with cancer. Adrienne was the patient, and what the patient wants is what matters most.

 

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