by Lori Hope
The following is based on Hope's book, "Help Me Live: 20 Things People with Cancer Want You to Know." Hope, a lung cancer survivor who had quit smoking 17 years before her diagnosis, solicited stories and information from cancer patients, caregivers, and health and communication professionals to determine what people with cancer most want those without the disease to know. Here are five of the 20 statements and how you can use them to support someone with cancer, especially lung cancer.
1. "I don't know why I got cancer, and I don't want to hear your theory."
Refrain from asking whether your friend was a smoker, even though it's natural to wonder. Whether he smoked or was exposed to second hand smoke or never smoked at all, the question can make the patient feel guilty, ashamed, or defensive. It can seem to the patient that you're asking, "Why did you get cancer?" If the cause of the cancer is important to the patient and if the she trusts you, she will bring up the subject. Otherwise, try to say something like, "Suffering is so random. I'm so sorry you're going through this and I want you to know I love you and I'm here for you."
2. "Asking my permission can spare me pain." Ask permission before visiting, sharing the news with others that your friend has lung cancer, and especially before offering treatment advice. People with cancer like to feel they are in control, especially since they may feel overwhelmed by the out-of-control growth of cells in their body. They may also feel overwhelmed by the treatment advice they've already received, or may need to maintain faith in the options they've chosen. Before saying, "You have to read this article about this new [mushroom, clinical trial, whatever], ask, "Would you like to hear about a new treatment I just read about?" Also, remember that the "new breakthrough" you may have read about online may not be available to the public for several years, or may not be appropriate for your friend's type or stage of lung cancer, and you don't want to set the patient up for disappointment. Do your homework first.
3. "I want to hear success stories, not horror stories." Tell positive stories, never horror stories, about other people who have had lung cancer. People with cancer need to feel hope, and horror stories are obvious hope-busters. This is true for anyone going through hard times, but even more so for those who rendered especially vulnerable by such a stigmatized and terrifying disease. People who have received a lung cancer diagnosis may be traumatized and may regress emotionally, like a toddler who's been potty trained and has to go back to the diaper. Remember that, and if the patient lashes out or seems to overreact to a statement, understand that this is to be expected, and just be as compassionate, loving and forgiving as possible.
4. "I need you to listen to me and let me cry." People with lung cancer need to feel heard and accepted, not judged, and they need to feel that you understand the magnitude of what they're going through. Most offensive comments are made because the speaker "blurts" without thinking, relating their own story or memory to the patient's, as in "My Aunt Hilda had lung cancer when I was a teenager and she died a year later." It's important to take in what the patient is saying, to focus on them, not your own well of fear or your own need to say something helpful. Just listen well, with an open heart and mind. As the Dalai Lama said, "Remember that silence is sometimes the best answer." This can be difficult to offer when you're on the phone, so saying something like, "I'm here to listen to you, I know there's nothing I can say to take away your pain, but if there is something I can do –- visit, run errands, whatever -- I am here for you." Also, don't minimize the patient's pain by saying, "Everything's going to be okay." Again, say something like, "I'm sorry this is so tough."
5. "Telling me to think positively can make me feel worse." Don't tell the cancer patient she has to think positively. Though studies show that hope can strengthen the immune system and stress can tax it, it can be impossible to think positively when you're traumatized, especially by a disease as stigmatized as lung cancer. Telling your friend it's normal to feel depressed will do a lot more for her healing than making her feel inadequate, guilty or frightened because she's feeling down. Psychiatrist Jimmie Holland, MD, mother of the discipline of psycho-oncology and author of the classic, "The Human Side of Cancer," writes about what she calls the tyranny of positive thinking: "All this hypes claiming that if you don't have a positive attitude and that if you get depressed you are making your tumor grow faster invalidates people's natural and understandable reactions to a threat to their lives." Better to say, "I'm here for you here, here to listen, here to help, whatever you need. I love you."
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