A Husband’s Perspective: Caring for a Loved One with Cholangiocarcinoma

In fall 2016, Nina Petrow was a successful, healthy, 38-year-old woman living with her husband Randy Pike, in San Antonio, TX. She was a mom for the third time, having given birth to a son, Nikolas, just 5 weeks before receiving the devastating news on November 29 that she had stage IV cholangiocarcinoma (CCA).

Mr Pike has extensively documented the journey that he and his wife traveled from the time that she was diagnosed to her untimely death. His blog, Married to Cancer, eloquently describes the ever-increasing challenge of taking care of his wife as her disease progressed, managing his business, and raising their 3 sons. Mr Pike’s blog is a very personal, cathartic story, but his aim is also to help other caregivers understand what their loved ones are going through, and to share some ways to cope with the stress that accompanies the daily caring for a person with a terminal disease.

To set the stage for his discussion at the 2020 Cholangiocarcinoma Foundation Annual Conference, Mr Pike reminded the audience that, “As close as I was to the illness, as good as I had gotten to keeping my finger on the pulse of this disease, I have no idea what it is like to hear the words, ‘You have cancer.’ I do know what it is like to care for a cholangiocarcinoma patient.”

He spoke about the frustration of not having something to guide him as he tried to put a plan together to help his wife, but he soon realized that nothing and no one can prepare you for what you and your loved ones are about to face after a cancer diagnosis. Despite not having the resources to assist him at the start of his wife’s battle with CCA, Mr Pike wanted to contribute what he learned during this difficult journey. At the recent conference, he shared the following thoughts with his caregiving peers.

Physical intimacyPhysical intimacy and cancer do not go together. Having no physical intimacy with the partner is a common theme among caregivers, when they get together to share their experiences. There are other ways to create intimacy. Talking can create new levels of connection with your partner.

Frustration is inevitableFrustration with your partner and the trials and tribulations of a cancer diagnosis are inevitable. Discuss your frustrations, but learn to forgive yourself when you do verbalize your annoyances. And always ask for forgiveness.

Take chargeHis wife was a fiercely independent woman who had a take-charge personality, but when Mr Pike saw that she was becoming debilitated, he needed to take control. As a caregiver, you need to take charge and plan as much as possible to prevent mishaps. Be proactive. Create schedules and task lists, which can help to provide some sense of control and order. Take care of your immediate family, and learn to say no to friends and family when you need space.

AdviceBe aware that advice is free and often unsolicited, and when your loved one has cancer, advice often comes in streams. Too many people who have little or no experience with a terminal illness will offer counsel. There is no penalty in ignoring uninvited advice.

Wondering “How am I going to make it?”It is only natural to wonder what the future will bring after your loved one passes. Will I have financial security? Who will be there to offer me emotional support? How do I start living my life again? But remember, you must not feel guilty. All caregivers need to address these tough questions so they could move on with their lives.

Get intuitiveToo many people look outside of themselves for the answers to the tough questions they are facing. Few individuals trust their own intuition. To access your intuition, you need to deepen your connection to it. Meditation is an excellent tool for this. Regular meditation will help you clear your mind of distractions and teach you how to recognize the answers within yourself better.

Find an outletFinding a constructive outlet for your pain and grief is therapeutic and can be a safe way to escape for a little while. Mr Pike’s outlet was writing a blog about his family’s experience with CCA. Whatever outlet you choose, make sure that it is positive, productive, and helpful.

Brilliantly fill the pages of your lifeIn the acute phase of grief, it is difficult to see the future. Find new meaning in your life after your partner dies. Focus on new goals and aspirations. Allow yourself to make a new beginning for yourself.

Mr Pike closed his presentation by stating that he was not going to let cancer define who he is or who Nina was to him and his family. His job now is to build a “big, beautiful life,” despite his devastating loss.