Help Me Live: 20 Things People With Cancer Want You To Know
Reviewed by: Alysa Cummings
The Abramson Cancer Center of the University of Pennsylvania
Last Modified: October 20, 2011
Author: Lori Hope
Publisher: Celestial Arts, 2005, revised & expanded in 2011
Information: $15.99 US
Twice in one week. Twice! Hard to believe. Statistically improbable. Totally aggravating.
I mean, really. What are the odds that in one short week, two different people from the World of the Healthy could each say such ignorant, insensitive things to me about cancer?
First of all, I have to say, (forgive my judgment) shame on them; people sometimes make incredibly stupid comments to cancer survivors. But then, I'm quick to add, shame on me for being at such a loss for words when they do. Here I am - a long term cancer survivor who still doesn't know exactly what to say back in the moment, so I get good and angry after the fact. I hate when that happens!
Let me stop, catch my breath and share what happened:
The cashier noticed that I was buying a pink ribbon product during Breast Cancer Awareness Month. While I swiped my credit card, I made the mistake of mentioning that I was a 13 year breast cancer survivor. The woman immediately said, "Breast cancer? Oh wow! My Aunt Rose died of breast cancer."
Then, just a few days later, a fairly new acquaintance who had recently heard some details about my health history, started up a conversation with this question, "Since it's been so many years since your diagnosis, your cancer is totally cured now, right?"
Hmmmmm. Not so much. But this was no time to explain what the phrase Dancing in CancerLand with N.E.D. means.
Oh, I just wish that author and lung cancer survivor Lori Hope could've been right next to me on both occasions as a witness. No doubt she would have helped me make sense of these experiences as two typical examples of what she calls "foot-in-mouth disease."
In her book, Help Me Live, Hope writes:
Very few of us would ever intentionally hurt anyone for any reason…and we would positively shrink in disgust from the idea of kicking someone when he or she is down. Yet we sometimes stuff our feet in our mouths, often without even knowing it…it happens when I, for whatever reason, neglect to think before acting or speaking, or when I cannot seem to control an impulse to blurt.
Bless Lori Hope for, first of all, writing this important book back in 2005, and bless her again for revising and expanding it in 2011 to include chapters on cancer and gender and young adult cancer. Help Me Live is a precious, well-researched gift to cancer survivors and caregivers alike, with lots of valuable insights and life lessons to enrich both groups of readers.
The countless patient anecdotes and insightful interviews with celebrated cancer patient advocates like Dr. Jimmie Holland, Dr. David Spiegel and Dr. Rachel Naomi Remen, acknowledge and ultimately validate how patients often feel once they have been diagnosed. How comforting as a cancer survivor to read that we are entitled to feel such intense emotions!
In fact, when you gather a group of cancer survivors together in a room it's highly likely that before long the conversation will turn to stories that fall under the category of you-won't-believe-what-someone-said-to-me. These stories will no doubt include references to "God's will" or "that's the good cancer" or "you could be hit by a bus tomorrow." Bottom line: what people say to cancer survivors who are already traumatized can unfortunately cause additional emotional injury and pain that has nothing to do with the rigors of cancer treatment.
Lori Hope's book offers caregivers a long list of practical ways to "be there" in the best possible way for loved ones following a cancer diagnosis. She provides clear, concrete answers to the questions people often have at this time of crisis (what can I say? what can I do?) when she writes:
There are six words that, when strung together, can defuse even the most nuclear of emotional energies: 'I don't know what to say.'
The author goes on to share incredibly helpful advice that is rarely shared so directly and honestly in a book about cancer. Hope suggests that the key to effective communication between a healthy person and a patient is simply this:
You listen. You shut up and listen!
The book also highlights a valuable strategy that can easily become part of any caregiver's tool box when considering how to best support a friend or relative with cancer. It is "the importance of asking permission. If there is any shred of doubt, it is best to ask…The only thing you do not need to ask permission for is to silently send good thoughts of love." Anticipating what a patient needs is an act of kindness. But asking before acting on that good intention insures that the act is a real need that will ultimately be well received by the patient.
In the spirit of David Letterman's Top Ten, the final section of the book is filled with one great list after another: 20 more things people who have cancer want you to know, 24 fabulous things people did for or said to those who have had cancer, 17 things people with cancer loved hearing and 20 great things to do for people with cancer (after asking permission, of course). These lists were created based on a 20 question survey administered in 2011 that garnered 634 responses. The ideas are touching and heartfelt and sure to help caregivers do the right thing.
Finally, the author sums up the spirit of Help Me Live when she writes,
People with cancer need to know you truly care, which you can demonstrate by listening, being respectful of their feelings, offering specific help and following through.
Please share Lori Hope's wonderful book with people in your life who are ready, willing and able to become more enlightened.