When a Spouse Gets a Cancer Diagnosis

My wife went for a biopsy and was diagnosed with pancreatic and liver cancer, which can be fatal in under a year. But luckily, her gerontologist at Cornell Weill Hospital in New York City recommended her for a clinical trial, combining immunology and chemotherapy, at Columbia Presbyterian Hospital that had demonstrated initial signs of helping patients prolong their lives. She was accepted into the trial.

Then she notified her friends via Facebook, text and email about her diagnosis. Their need to ask questions and get responses quickly, all motivated by their concerns, can sometimes be a bit much or poorly timed.

While my wife has many close friends and family, she's exhausted, stressed out and depleted. Having friends persistently contact her, asking her detailed questions — some of a complex medical nature — increases her stress level and doesn't alleviate it. One friend wrote that she would refrain from contacting her, knowing the strain she's under. That friend deserves a medal.

After my wife curtailed her responses with her dozen or so close friends and family, the responsibility to keep friends updated fell on me. Emails and telephone calls started coming in at a rapid pace regarding my wife's condition. Finally, my wife sent a notification to everyone, asking them to let up on asking questions of me and that we would keep them notified.

A cancer patient's spouse is under extreme stress supporting their partner: transporting them to and from the hospital, handling the food, laundry and finances at home, and doing everything possible to alleviate the cancer patient's burden so they can focus on treatment and then recovery.

Based on interviews with some leading experts, I learned cancer patients and their spouses or partners are often walking a fine line in order to keep friends and family informed of the patient's progress, without overdoing it, all while maintaining their own equilibrium — a delicate balancing act.

Chadhi Nabhan, author of "The Cancer Journey," a former medical director at the University of Chicago's Clinical Cancer Center and now chief medical officer at Ryght, a Generative AI company aiming to improve access to clinical research, says updating family and friends depends on the "personalities of the patient and spouse."

He says, "Some people are closed and private and don't like to share information, and some are open, post updates on Facebook and other social media, or start blogging about their illness."

Most family members and loved ones aren't satisfied with general updates on Facebook. They often feel because they are so close to the patient, "they are more privileged in knowing more," and that leads to the persistent follow-up questions that bedevil either the spouse or patient, Nabhan points out.

Nabhan explains the role of the caregiver is to "reflect the wishes of the spouse." If the cancer patient opts to share information, the caregiver becomes the conduit. If the patient prefers to be tight-lipped, then maintaining privacy takes precedence.

Either way, the caregiving spouse faces "enormous pressure. Once the information becomes public, the partner is going to be bombarded by phone calls, texts or emails, saying is the patient okay?" notes Nabhan.

Pressure on the caregiver operates on three levels; being expected to answer all questions; serving as communication coordinator while still taking care of the loved one; and avoiding burnout since too many caregivers forget their own needs while helping their partner.

Many friends and family recognize that they don't want to overwhelm the cancer patient so turn to the caretaker, but they're often overwhelmed. Megan Shen, an associate professor of social psychology at Fred Hutch Cancer Center in Seattle, says many caretakers suffer from "anticipatory grief, where their fear of losing their loved one causes emotional distress."

Nabhan's best advice for family and close friends who want to stay updated on how to deal best with the healthy partner is to "read the room. Have the emotional intelligence and awareness of what is right and what is not."

For instance, if a friend or niece or nephew is sending texts and getting delayed responses or curt ones, "it means the couple is busy. They have other priorities and can't drop everything and answer your text or email. Have the courtesy, despite your love, to give them the space they need."

He also advises concerned family and friends to avoid posing detailed medical questions about the patient's condition. "Most cancer patients aren't aware of every single detail so asking puts them in an awkward situation," Nabhan explains. "They may feel they should know more and that's the last thing you want to do."

Shen says most patients express similar feelings about their cancer diagnosis. "Their whole world stops, they're getting the worst news of their life and simple tasks like waking up and doing normal things become challenging," she says.

Faced with these feelings, Shen notes, "a barrage of questions, emails or texts adds to the feeling of being overwhelmed." Since most cancer patients, especially at the early stages, are coordinating appointments and dealing with scans and follow-ups, many don't have the bandwidth to take time out to respond to friends and family until things sort out.

In fact, at the earlier stages, cancer patients aren't equipped to answer most questions because they don't know exactly what is going on, their medical routines haven't been established, they don't know what exactly they need, what their treatment will entail and what the next steps are.

And yet, there is a reason for close families and families to reach out. As Shen points out, most cancer patients view "silence as a painful response to a cancer diagnosis" as if loved ones don't want to deal with a cancer patient at all. Just checking in with comments such as, "I'm thinking about  you, I'm here to offer support in whatever way you want," offers assistance for the challenging journey ahead.

When my wife was ready, she distributed a key update about how her trial was going, saying "thanks for all your texts and emails to keep in touch and find out how I'm doing. I appreciate all your love and support."

Nabhan's best advice for the caretaker is to agree on a "uniformed approach. Send an email to friends and loved ones explaining the situation and notifying them that you will try to keep them updated as best you can, as the situation evolves." Sometimes a once-a-week communication will suffice.

For family and friends, "the most important question to ask is, how can I best help you?" Nabhan says. That assistance can play out in several ways including grocery shopping, cooking or even driving the patient to a clinic appointment.

Patients and caregivers can ask for specific things to get done from a particular friend or family member. For example, they can say "my husband is on a deadline so can you take me to the doctor's office at 3 p.m. on Wednesday?" or "can you pick me up dinner on Wednesday night because my spouse needs to stay late at work?"

One other technique that can alleviate stress is to designate an outsider, like an adult child, as the main communication coordinator who filters info and updates from the patient to others. Two websites, My Cancer Family and Caring Bridge, can help coordinate tasks for the patient and caregiver.

Shen's best advice to friends and family: "Follow the patient's lead, let them indicate how they want support. Sometimes you have to let go."