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What not to say to a cancer patient
With the number of cancer patients rising year-on-year, about 47,000 new cases every year, according to the Ministry of Health, you are likely to interact with a cancer patient, survivor or become a caregiver to a sick person.
Do you know what to say or what to do when a friend, relative, or neighbour has cancer?
Chances are, like some Kenyans, you avoid the person because you have no idea what to say, or you end up making distasteful or unhelpful comments like, “my uncle had a similar cancer, but he died; you should be thankful that you’re still alive.” “Which stage is it?”
Most times, this question is asked to gauge the number of years remaining before the patient dies. Some say, “don’t even go for the scan, believe the cancer will disappear and join in praying the St. Rita Novena.”
With the number of cancer patients rising year-on-year, about 47,000 new cases every year, according to the Ministry of Health, you are likely to interact with a cancer patient, survivor or become a caregiver to a sick person.
How do you become a good listener or know what to say?
“You have to master three skills: learn how to listen, be present and support the person. Sometimes a cancer patient opens up, and the other person starts offering solutions and narrating their own experiences. I came to you to unburden what’s eating me up emotionally, don’t burden me with your problems or experiences unless I ask. All I need is a listening ear, offer me a hug, tea, nod,” said Livingstone Simiyu, a chronic myeloid leukaemia (CML) survivor during a cancer meet-up held at Guru Nanak in Nairobi and organised by A Fresh Chapter.
The organisation was founded by Terri Wingham, a breast cancer survivor and brings together survivors, caregivers, and patients to discuss how best to make sense of the complex emotions of cancer.
“Don't downplay a cancer patient's feelings by telling them about your uncle’s or grandmother's,” adds Livingstone, a 32-year-old lawyer who was diagnosed with cancer in his early 20s and is now a lead facilitator at A Fresh Chapter.
Mary Nafula, a 50-year-old breast cancer survivor, adds that comfort can be shown through small gestures like holding a patient’s hand or patting their back.
“Oftentimes, the patient’s emotions are wandering. Be an anchor. Provide a space for them to talk. If you have to ask questions, ask open-ended questions. One of the mistakes that many people make is showing pity. No one wants to be pitied. Show empathy but not pity. Don’t be the kind of person who’d say, “Wah, so what will you do?”
Silence is one thing that many people haven’t mastered.
“Be comfortable with not saying anything when a cancer patient is talking about the challenges she’s facing. By actively listening, you’re already helping; you don’t have to add unhelpful information,” Mary said.
Lack of cancer etiquette
These comments often stem from discomfort or ignorance, but they are harmful. They often shift focus away from the patient’s experience, imply blame or make someone isolate themselves or feel ashamed and suppress authentic emotions.
Due to a lack of cancer etiquette, many patients stop sharing altogether. One attendee recalled telling a friend about his cancer diagnosis one evening, only to receive 10 calls the next morning from people he had not told.
To patients, Livingstone advises: be selective about whom you open up to.
“Trust is key. You tell a friend that you’ve been diagnosed with cancer, and the next day, everyone in the neighbourhood is pointing at you with the tips of their noses and speaking in hushed tones, ‘you see that man? He has colon cancer.’”
Violating a patient's trust can cause trauma, anxiety, and shame.
Livingstone compares sharing cancer information to peeling an onion.
“Share your cancer story like you’d peel an onion. The most intimate information is as fresh as a peeled onion. If you're not comfortable yet, leave it out. For instance, this is a group of cancer patients, caregivers and survivors, I can comfortably talk about my diagnosis, but I can’t share all,” said Livingstone.
When Livingstone was diagnosed with CML, he says, he had never heard of the word cancer.
“Of course, when you’re in a hospital bed alone, you decide to consult Dr Google. It was 2013, and in those days, Google told me I had six months to live. I asked myself why struggle to live, and yet I have a few months to live? But Dr Google was wrong, look at me now,” he said.
Some parts of the story aren't for everyone
Not everyone needs to know the most private parts of your experience—whether it is that you have had a mastectomy and have one breast, or wear a colostomy bag, a pouch worn on the abdomen to collect stool after colon cancer surgery is done.
“I remember telling a friend how I was kept in a mortuary for 8 hours because the doctors thought I was dead, a story that I had kept to myself and family for years. The next morning, everyone in school knew about it. I was so depressed,” said a 25-year leukaemia survivor.
Another thing that people ought to learn to do is manage patients’ emotions.
“Chronic diseases come with a mixed bag of emotions. If the PET scan shows progress, you’re happy. But then sometimes you’re sad, thinking, ‘ what if the cancer comes back?’ In such moments, cancer patients or survivors may not want to talk. Let them be. Don’t start giving them distractions like alcohol. Will alcohol make the fear of recurrence go away? As a cancer patient, learn how to deal with that emotion because it is there for just a moment. Chemotherapy and radiotherapy will be there for a season, and so are the side-effects,” Livingstone said, "acknowledge dark and light moments."
Be mindful of toxic positivity
“Being positive is okay, but stop telling someone who has just been told she has cancer that “strong is our tribe,” Florence Maluni, a breast cancer survivor who was also a facilitator at the A Fresh Chapter sessions, usually termed as Mizizi workshops, said.
“I had a fear of a breast cancer recurrence and told a friend. She told me to stop being negative, that other patients are worse off than I am. I started blaming myself for not being positive enough. You hear someone tell you to take a stance of faith and pray the Novena, yet at that time you don’t even know what that means,” she said.
“There’s a mother who told someone that her 11-year-old son had a colostomy bag, and the person replied, 'There are even people who work in offices with colostomy bags.” This may sound like encouragement, but it is off-putting,” she said.
If a cancer patient has no trusted friends or wants to share deep information, write letters and a journal. And also incorporate self-care, even as a caregiver. Listening to cancer patients can be emotionally heavy.
“I set aside two hours every Saturday to listen to rhumba by myself. No guilt,” Florence said.
