5 Things I Learned Going From Patient to Cancer Caregiver

Years after I went through mesothelioma, my husband was diagnosed with cancer, causing a reversal in the patient-caregiver roles.

Being diagnosed with cancer never crossed my mind as a pregnant 21-year-old college student. No one could have prepared me for what I was about to endure.

In 2007, I was told I had a fibroid tumor, which was found in a routine ultrasound during my pregnancy. After I gave birth to my son, the fibroid grew, and as a precaution, surgery was advised to remove it.

It was a cloudy day, yet I vividly remember when the doctor stood at the foot of my bed in recovery and said to me, “you have cancer — peritoneal mesothelioma to be exact.”

Peritoneal mesothelioma is a type of cancer that is caused by asbestos exposure. Asbestos is a harsh and toxic substance that has been and still is used within certain materials.The materials can range from car parts to construction materials, and even baby powder. When asbestos is inhaled or ingested, it attaches itself to your organs, most commonly the lungs but in my case, the lining of my stomach (the peritoneum). It can lie dormant for over a decade before it impacts one’s quality of life. Usually, patients are diagnosed decades after the initial exposure and most patients are in their mid to late 60s.

With that said, I didn’t fit the description of the “typical patient,“nor did I know what peritoneal mesothelioma was.

As part of my treatment, I underwent an intense 10-hour surgery that included heated chemotherapy (HIPEC). It left me unable to care for myself or my son properly, so my husband became my caregiver and the main caretaker of our baby. He would get up every night for feedings, diaper changes, you name it, all the while attending to my needs as well.

At times I did feel as if I wasn’t pulling my weight or holding up my end of the bargain. I would sit and dream of the day I would be healed and strong enough to do my part.

That day came when I was given a good bill of health!

More than a decade later, my world was rocked again by cancer. My husband came home one day from a doctor's appointment and told me he had cancer (mucosa lymphoma).

I dropped to the floor in disbelief, but he pulled me back up, looked me in my eyes, and said, “We’ve been through this before, and God has brought you out and will do the same for me.”

That’s the day our roles were reversed. My husband had to have eight weeks of daily radiation. He never complained or missed a day of work or school. At times I feel like I could have done more, but I did the best I could do at the time.

From my experience here are some things I’ve learned.

  1. Everyone’s needs are different. Although we both had cancer, our needs were not the same. We had different treatments
  2. Stop and listen. I feel that as a mom I need to be a step ahead of my children because I assume what they will need, or what they will say. While caregiving for my husband, I had to learn to listen instead of acting on what I thought he needed or wanted.
  3. Have your moments of release. When you are in the caregiver role, the burnout can hit you fast and hard. At times I would just sit and release my emotions, most of the time I would cry, or let out a wail. But it allowed me to release those pinned-up emotions.
  4. Take things one step at a time. This is so important because life situations can sometimes get us in a “rush” to do things just to get it over with. Don’t rush the process; take things and deal with them as they come.
  5. Take time for self-care. Yes self-care is the best care and although some caregivers may feel guilty for taking time for themselves it’s needed. Remember that you can’t pour from an empty cup. Find things that feel your cup so you can be at your best for your loved one.

Taking care of your loved one with cancer is a hard task that impacts you physically and mentally. I hope that sharing my experience and knowledge will encourage and help inspire and help others.

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