Communicating openly with friends and loved ones can be complicated at the best of times. After a cancer diagnosis, it can become even harder. But sharing information about your health can help the people close to you understand what you are experiencing, garner the support you need and reduce stress and isolation.
“There is no one right way to talk about cancer. It’s [the patient’s] story to share.” – Dr. Jennifer Pink
Dr. Jennifer Pink, a post-doctoral fellow in the department of psychosocial oncology at Calgary’s Tom Baker Cancer Centre, helps patients, as well as their families and friends, to find ways to communicate about cancer that work for them through individual, couple and family counselling sessions and through facilitated support groups.
“It is a privilege to be part of families’ cancer experiences and to help them along,” Pink says. “When a person has cancer it can be a very challenging time, but it can also be a meaningful time and promote opportunities for change and growth.”
According to Pink, it can be helpful for everyone affected by a cancer diagnosis to continue to communicate — research shows that people close to cancer patients often have “similar or higher levels of stress” than the patients themselves. One way to mitigate that stress is for patients and loved ones to talk openly and honestly.
Let’s say, for example, that a person with cancer would ordinarily enjoy a weekly workout with friends. But if that person is going through treatment and feeling fatigued or nauseated, they may not be interested or able to keep up that routine. If their friends know this, they will understand why the person is cancelling, and can suggest an alternate plan, like a quick visit over tea.
But patients may be afraid to disclose such intimate information for fear of negative responses or a perceived lack of support. Indeed, well-meaning friends may say things that are intended to be helpful (“Just be positive,” or “Don’t worry”), but that actually come across as dismissive and hurtful because their simplicity does not begin to acknowledge the profound and complex nature of the disease. Alternatively, the friends may be so paralyzed by their own anxiety about the situation that they don’t say anything at all.
“We are not really taught about how to respond to people who are experiencing a serious illness,” says Pink. “That is not a course we take in school.”
However, the benefits that people with cancer experience when talking with trusted loved ones about such things as their diagnosis, the side-effects of treatment, changes in physical appearance or other challenges can far outweigh the risks. Letting others in brings greater support both to the patient and to their loved ones.
Email, Pink says, can be a convenient framework for updates. A family member or friend can compose an email on behalf of the person with cancer, with their input, and send it out regularly. But, Pink advises, it’s important to be cautious with social media platforms like Facebook and Twitter, where personal information may be viewed and forwarded broadly without permission.
For more casual connections — a colleague or a new friend, for example — Pink advises patients to try writing out scripts, especially when feeling unprepared about discussing their diagnosis. That way, they’ll be ready when people ask, “How are you?”
In these cases, Pink says it’s also okay to just mention one or two bits of information, such as, “I have cancer and am taking treatment.” Then, if people ask further questions you do not wish to answer, repeat the initial comment.
“Feel free to be a broken record,” says Pink. “There is no one right way to talk about cancer. It’s [the patient’s] story to share”
Engaging with friends who have lost a loved one to cancer
- Acknowledge the loss with quick texts like: “Thinking of you.” “I know it is hard.” “Let me know if you need anything.” All convey caring and concern.
- Don’t be offended if recipients don’t respond or decline invitations. Don’t badger them.
- Issue an invitation to social events, but don’t worry if they cancel at the last minute.
They are likely in self-preservation mode.
- Do not pretend to know what is best for them. Comments like, “You just need to
get out of the house,” or “Come over for a few beers and get it off your mind,” are
hugely insulting to the very real suffering they are experiencing.
- If they do attend an event and act out of character, be kind and forgiving. Grief is a messed-up journey.
- Consider visits or outings that involve physical exercise.
- Always act with empathy and compassion. Let your friends define their own social boundaries.
Thank you to Todd Kemper, who lost his wife, Linnea, to breast cancer in 2014. He created this list.