Cancer Patients Want You to Know

Lung cancer survivor and author Lori Hope provides insight from cancer patients about what family and friends can do—and what they should not do—when a loved one has been diagnosed with cancer.

By Lori Hope

When I was diagnosed with lung cancer in 2002, I felt not just gut-punched but shocked silent. Although I had smoked in my twenties, I had kicked the habit, or rather the addiction, almost two decades earlier. Wasn’t I supposed to be out of the woods after doing the right thing?

Having mourned the loss of my great aunt Hilda who died of the disease, and believing that I too would succumb (I’d never heard of a lung cancer “survivor”), I was devastated. More than anything, I needed hope. But more often than not what I heard from others dented, dashed, or sometimes temporarily destroyed that vital feeling.

“Lung cancer? My aunt died of lung cancer,” some would say, as if casually remarking, “You got those shoes at Macy’s? My aunt got those shoes at Macy’s!”

Although I was tempted to say something like, “Oh, really? My aunt died of lung cancer, too! Gives me something to look forward to,” I knew they meant no harm and were just attempting to find common ground. Problem is, they failed to think before speaking, and some would follow up with something else equally thoughtless like, “Did you smoke?” further dampening my hope. Psychologists say that self-blame—feeling that one’s cancer is deserved or a punishment, especially in a religious sense—can kill hope.

Wanting to make good use of my name, I decided after having cancer to write a book that would speak on behalf of cancer survivors too considerate, fragile, or temporarily weakened to share what they really need. In order to share stories, which is how most of us learn best, rather than listening to direct instructions (do’s and don’ts), I interviewed and surveyed scores of survivors, mental and physical health care providers, and others. Help Me Live: 20 Things People with Cancer Want You to Know came out in 2005. The book enjoyed a wide readership among not just friends and loved ones but also survivors themselves, who felt validated and reassured.

In September 2011 a revised and expanded edition of Help Me Live, based on a survey of more than 600 survivors and comments from hundreds more, was released. A few of the statements had changed, but the messages remained fundamentally the same: people with cancer need to feel heard, respected, and cared for—just like the rest of us but more so.

It is my greatest hope that someday this book will no longer be needed—that cancer will be eradicated, or at least that people will become more sensitive to the needs of those afflicted by this horrid disease. But in the meantime, may the following statements help you find the way to show your friend or loved one how much you truly care.  _

20 Things People with Cancer Want You to Know

  1. “It’s okay to say or do the ‘wrong’ thing.”
  2. “I need to know you’re here for me, but if you can’t be, you can still show you care.”
  3. “I like to hear success stories, not horror stories.”
  4. “I am terrified and need to know you’ll forgive me if I snap at you or bite your head off.”
  5. “I need you to listen to me and let me cry.”
  6. “Asking my permission can spare me pain.”
  7. “I need to laugh—or just forget about cancer for a while!”
  8. “I need to feel hope, but telling me to think positively can make me feel worse.”
  9. “I want you to respect my judgment and treatment decisions.”
  10. “I want you to give me an opening to talk about cancer and then take my lead.”
  11. “I want compassion, not pity.”
  12. “Advice may not be what I need, and it can hurt more than help. Try comforting me instead.”
  13. “I am still me; treat me kindly, not differently.”
  14. “If you really want to help me, be specific about your offer, or just help without asking.”
  15. “I love being held in your thoughts or prayers.”
  16. “Hearing platitudes or what’s good about cancer can minimize my feelings.”
  17. “I don’t know why I got cancer, and hearing your theory may add grave insult to injury.”
  18. “Don’t take it personally if I don’t return your call or want to see you.”
  19. “I need you to offer support to my caregiver because that helps me too.”
  20. “I don’t know if I’m cured, and bringing up my health can bring me down.”

And one more thing . . .

  1. “I am more grateful than I can say for your care, compassion, and support.”

20 More Things People Who Have Cancer Want You to Know

  1. “I need to be touched.” (Ask permission first, of course.)
  2. “I want to be indulged. Even if I’m wrong, let me be right, just for now.”
  3. “I want you to help me believe in miracles.”
  4. “When you say you’re going to do something for me, follow through quickly.”
  5. “Being sick is expensive; offer to treat me.”
  6. “Sometimes I’d rather hear about your day than share news about mine.”
  7. “You don’t know how I feel. Please don’t say you do.”
  8. “I don’t want to hear that I’ll be just fine.”
  9. “I don’t want to be blamed for having cancer, even if I may have done something to bring it about.”
  10. “I may be extra sensitive to chaos and bad news. Keep it calm and positive.”
  11. “I am unique, so please don’t compare me.”  Said one survivor, “Don’t tell me how wonderful Lance Armstrong is, not letting cancer get him down’ . . . you don’t read about when he was down or puking or tired, and when you compare me to him or any other famous cancer survivor, I feel like I am less-than because chemo is kicking my butt.”
  12. “I don’t like to hear how awful or thin I look.”
  13. “I don’t like to be labeled as a hero. I’m just doing what I have to.”
  14. “I’m not contagious and feel horrible when I’m treated that way.”
  15. “I want and need privacy.”
  16. “It’s hard to hear how scared you are for me.
  17. It’s tough enough dealing with my own fears
  18. “I don’t want to be looked at like a ‘dead man walking,’ even if I am.”
  19. “I need you to accept whatever I am feeling.”
  20. “The simplest gesture, like a text message every day or two, can mean the world to me.”

20 Great Things to Do for People with Cancer (after Asking Permission, of Course)

  1. Research free services to organize help (such as Lotsa Helping Hands, Cleaning for a Reason, and GiveForward).
  2. Call or write, sending cards, letters, or even postcards. (Be sure to say you don’t expect a response.)
  3. Collect success stories about people with the same exact type and staging of cancer who fared well and ask if you can share them.
  4. Visit—without expecting to be entertained.
  5. Listen without interrupting, judging, or having to respond.
  6. Treat them to lunch or tea.
  7. Treat them to a massage.
  8. Set up a prayer or silent unity group.
  9. Bring pets to visit.
  10. Do medical-related research.
  11. Read to them.
  12. Rub their feet.
  13. Make a list of visitor rules for them to share with others.
  14. Send a list of funny movies.
  15. Buy a gift of special shampoo at a beauty salon.
  16. Deliver meals (restaurant or homemade) or give food gift certificates.
  17. Have their house cleaned, or clean it yourself.
  18. Purchase gifts, such as easy-care plants that affirm or symbolize life.
  19. Do their laundry or pick up dry cleaning.
  20. Help their spouse, children, or other unpaid caregivers.

Reprinted with permission from Help Me Live, Revised and Expanded: 20 Things People with Cancer Want You to Know. Copyright © 2011 Lori Hope, Celestial Arts, an imprint of Ten Speed Press and the Crown Publishing Group, Berkeley, CA.