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This three part blog post is another take on the “less is more” concept in conventional oncology. I am a long-term cancer survivor, the caregiver below is my son and the article linked and excerpted below that is a NYT article written by cancer survivor and writer Jane Brody.
My son has lived with a cancer survivor (me) for his entire life. Alex has heard me talk about this issue dozens of times over the years.
Jane Brody has written about how best to talk to cancer patients in more detail than my son. Both viewpoints are worth a careful read.
Today I’m going to talk about what not to say to cancer patients or caregivers. I’ve posted a list of phrases that seem comforting and helpful, but should actually be avoided.
If you have ever said something like this to a patient, don’t feel too bad, they probably knew your heart was in the right place. I’ve said things like this my dad. Even regular caregivers like my mom and I make mistakes like this because these phrases are ingrained in our brains, people say things like this all the time. By “like this” I mean optimistic sayings that are an attempt to help someone look on the bright side. Cancer is often so devastating to someone’s mental state that they can’t simply have a glass half full attitude.
Like “what doesn’t kill you makes you stronger” is unhelpful because it downplays the seriousness of the situation (although it depends on the person of course, my dad would agree with this sentiment.) The religious ones, “This is Gods plan” and “God doesn’t give you more than you can handle” I know would piss my dad off a little bit because he’s not religious. Spiritual yes, but religious, no.
I assume religious people offer this type of advice because that’s how they cope with a tragedy, but this sentiment isn’t much help if the person on the receiving end doesn’t believe in god in a conventional sense. The thing to keep in mind is that you shouldn’t say things because they encourage one to look optimistically at the situation or forget about the big underlying issue wether it be cancer or PTSD or an injury.
Many people cope with issues this way, by escaping from them, not thinking about them. For someone that suffered through a traumatic experience, this is an impossible task. The effective way to cope is to learn to live with something instead of forgetting that it happened. My dads cancer will always be a part of him, it changed his life forever and he thinks about it every day, but he came to terms with the fact that the cancer will always be a part of him forever. 20 years ago when he was battling cancer his outlook was bleak, but since then he had learned to live with it. That is perhaps the most important part of coping. Knowing that the tragedy will always be a part of you, but it doesn’t have to control you.
What you should say to caregivers and patients instead of things like the phrases above, are words of sympathy and empathy. Showing a patient that you recognize their immense pain and feel for them. When you are not sure of what helpful words to give, the best way to show support is with a hug, or a squeeze of the hand- in short, less is more.
“But as caring as those words may seem, they are often not helpful and may even be harmful. At a celebratory family gathering a year after my own cancer treatment, a distant relative asked me just that. I answered, “I’m fine.” She then pressed, “How are you really?”
“Really” I was fine, I told her. But what if I hadn’t been? Would I have wanted to launch into a description of bad medical news at what was supposed to be a fun event? Would I have wanted even to be reminded of a bout with cancer? Although my relative undoubtedly meant well, the way her concern was expressed struck me as intrusive.
A diagnosis of cancer can tie the tongues of friends and family members or prompt them to utter inappropriate, albeit well-meaning, comments. Some who don’t know what to say simply avoid the cancer patient altogether, an act that can be more painful than if they said or did the wrong thing…
However, he observed, “Words of optimism may work in the short run, but in the long run they can induce guilt if the cancer is more virulent and defeats a person’s best effort.
“I was dealing with the possibility that my life would end shortly, or if it didn’t, it would be changed dramatically. False optimism devalued what was going on in my body. People were insensitive not from a lack of compassion but from not knowing what is really helpful…”
Dr. Goldberg suggests that when visiting a cancer patient, people talk less and listen more. ”Often the greatest support comes from silently witnessing what a person with cancer is experiencing,” he wrote. “Sometimes only a calm presence and compassionate listening are necessary. Silence becomes the breathing space in which people living with cancer can begin difficult conversations…””