Running Into Worry
While standing in the ordering line of a locally famous ice cream shop, I ran into an acquaintance. She pulls me aside and whispers, “I have bad news.” Her face has lost all color. My first thought is that it must be about her parents. Like my parents, they are at an age at which lousy news would shock only the immediate family. Everyone else would say platitudes like, “She had a full life,” or “He got to see all his kids settled.” But this isn’t about her parents. “I just got diagnosed with breast cancer,” she clarifies.
“I am so sorry,” I say while attempting to comfort her. My life with Uzma, from first meeting her, making good memories and not so good ones, and to her death from cancer flashes before my eyes in an instant. The terrified woman says, “All I can think of is Uzma.” Her son and husband, standing a step or two behind her look frozen. All I can say there is that I am sorry for what she is going through. Observing that the noisy ice cream shop was not the right place to have this conversation, I take her number down and promise to talk to her another time.
What can a person in my shoes say to a person in her shoes? Cancer took my wife. One of the world’s top breast cancer specialists treated her at a premier university hospital. Uzma was one of the best patients a doctor could ask for — well-informed, asking many questions, but then taking every dose of every medicine prescribed unless the doctors told her to hold it. She added complementary approaches to standard treatment to improve her life. She practiced gratitude and a positive attitude. Still, she died. What meaningful thing can I say to any woman newly diagnosed with breast cancer?
Platitudes Don’t Give Hope
My first instinct is to say something that gives hope. But I remember how hollow and empty comments such as “everything will be alright” used to sound when Uzma was first diagnosed with cancer. “How do they know when even our doctors don’t know?” Uzma and I would ask each other. Everything may be alright in the long run. Ultimately no one is indispensable. Eventually, people learn to live without loved ones who die. But that’s not the goal of the people doling out hollow reassurance. They are trying to instill hope in the near-term. Towards that end, such comments were a big miss with us.
When the shock of those three words, “You have cancer” hits, it feels as if the very ground under the entire family’s feet has vanished. A free-fall begins — scenes from one’s past whiz by with a feeling of unreality. Visions of alternate futures appear and disappear with a sense of immense sadness. You realize that some of those futures will never be. Sometimes, it feels as if the falling will never end. At that stage, everything seems surreal. All because of three words.
How can any hollow platitude give real hope at that time? Some people have a hunch that this might be the case. They try to give their superficially hopeful statements a shot in the arm by first trying to learn more about the victim’s cancer, their diagnosis, and treatment. They pepper the patient or her family with questions — what, where, when, why, and how? It usually backfires. No matter how much detail we learn about how the person found their cancer, what the test results show and what the doctor said, none of it changes the fact that uncertainty haunts the home and the mind of the newly diagnosed.
The Phone Call
I prepare for my phone call by practicing saying this, “Cancer sucks! I am sorry you have to deal with this. There is nothing I can say or do that will make you feel less nervous right now. But I do want you to know that Uzma’s cancer story is only one type of breast cancer story out. There are others out there, in many of which recurrence does not follow remission. No one can tell you today whether or not your cancer journey will ape hers. The best thing you can do for yourself right now is to make sure you have the right doctors on your side — doctors who are right because of their competence and because you trust them. Then let them guide you. Let me know if there’s anything I can do to help you on that front.”
I know before the phone call that this will be a dialogue, not my monologue. But practicing what I wanted to say ensured that I told everything I wanted to say. More importantly, it will lower the odds of anxiety making me blurt out something insensitive. I make the call. I don’t ask a single question about the diagnostic process, the treatment recommended, the test results, and all the other information to which I had no right. She shares some of this information on her own.
That part of the conversation is followed by the only question I want to her, “How are you sleeping?” She tells me she is having a hard time since the diagnosis. I recall our days after Uzma’s diagnosis. I remember Uzma deciding, after a couple of weeks of poor sleep, that she couldn’t afford to go on like that. She told her doctor, “I need rest. I have a lot of information to absorb right now, a lot of challenging decisions to make. I can’t do myself any favors by being sleep-deprived and tired all the time. Can you give me something to help me sleep?” I share this memory with our friend and urge her to consider doing the same. She replies, “I hadn’t thought of that, but it makes sense.”
Calling The Husband
Later that day, I call her husband. The first part of that conversation is similar to the first part of the conversation with his wife. I empathize with the burden placed on their lives by cancer and the uncertainty accompanying it. I ask him if he would let me give some unsolicited advice. When he approves, I say, “This is a time when you will need all the help you can get. For a variety of reasons, most of us find it easier to help others than to ask help for ourselves. But this is a time when asking for help is the thing to do. There is no shame in it.”
I also suggest that they consider getting as much paid help as they reasonably afford. Paid help can provide predictable daily support to do things that need doing every day. Even if one is wholly preoccupied with cancer and its treatment, the dishes and clothes still need cleaning. At this moment some or all of the money one spends on vacations and entertainment is better diverted to getting paid help.
I share with him that it was not easy for us to make the shift. It’s easier to give than receive help because receiving makes us feel exposed and vulnerable. Especially when dealing with a serious illness like cancer, we also know that we may never be able to return the favor. All we may be able to do is express heartfelt gratitude. And that’s okay. We eventually grasped that even if we can’t return the favors received, we can pay it forward by helping others in our shoes.
I want to say a lot more to both of them. Ignore the avalanche of bullshit dietary advice about to head in your way, I want to say. I want to tell them about the people who will vanish from their lives during their most challenging time. And tell them of the strangers who will step up to help. There’s much, much more. But I decide against it. Just because I want to tell them all this doesn’t mean it it is the right time for them to hear it.
As I end the conversation, I find myself wishing that her cancer responds so well to treatment that she and her family will eventually look back at this time as nothing more than a bad dream.
I don’t know if this was the best way to handle this. I used what I have learned from Uzma’s and our family’s cancer journey. There were three most important lessons that I learned about those early days of the cancer journey. First, no matter what anyone says, the hand early days (and often later ones too) are days deep uncertainty. Second, early on, cancer patients are often tired of sharing their stories repeatedly with different healthcare professionals and family members. Sharing them with yet another person with whom sharing is not essential is not something they relish. Third, exposing one’s vulnerability by asking for help is hard but necessary to navigating cancer.
Asking for help is so hard for me but after living with MBC for three years, I have learned to do it. I have found that as much as I need help to maneuver the world I live in now, my family needs to feel useful just as much.
cathyc18, I agree to ask and accept help is indeed one of the hardest tasks one has to do when faced with a serious illness. I am glad you learned to do it.
I think you handled this quite perfectly. I have similar feelings when I hear of someone who was recently diagnosed, always wondering how much to share, how hopeful or optimistic to be, how much of the truth to tell, as many are happier to not ask questions. Your insights are universal and if they feel the need for more from you at a later time, they will most likely feel that they can come to you for more in depth info if they want it. The other day I opened up a note I had saved in my “breast cancer letters” pile, that was from Uzma. She was thanking me for something I sent her, and I was again, struck with her grace under pressure. She took the time out of what I know were precious last days, to respond to my note and it made an impact on me. She was a very generous and gracious woman who is missed.
Thank you for sharing your experience in interacting with Uzma. She was indeed a graceful and generous person.
I miss her… even though never met personally.Doc Raina…. you have my admiration
It’s a tricky landscape to share our cancer experience with newly diagnosed folks. You handled it beautifully. The avalanche of BS dietary advice is a cautionary tale, as is the insistence by many that a cure exists but greedy docs and big pharma are keeping it secret. Each cancer “journey” is as unique as the cancer itself, and I’m thrilled to read that you offered that fact as reassurance. I’m also quite the fan of your advice to set aside pride and accept help. That was quite tricky for me, but with two young kids, accepting help was a necessity. I’ve learned to be open and vulnerable because of it, and it netted me a dear friend who began as an acquaintance and walked nearly every step of my cancer “jouney” with me, ending up as close as a sister. Your wisdom about people vanishing just as the going gets tough rings true, true, true! My former BFF struggled with not being the center of attention and our friendship did not survive. The last straw was when she decided she couldn’t drive me to a post-mastectomy follow-up appointment, even though I was unable to drive, because there was an unexpected opening at the spray-tan place. Sheesh. Good advice, sir. Uzma would be proud.
Thank you for your comment. Sorry about your ex-BFF. Uzma’s relationship with a close friend and a close relative changed for the worse following her cancer. However, the more she shared openly about her cancer, the more amazing people came into her and our lives. Some of those amazing people are in our today.
The “big pharma doesn’t want a cure” canard is the one that drives me nuts. People seem to not know and don’t care to understand the challenges that face pharmaceutical research. Or that revolutionary treatments make a lot of money for pharma. But the worst, of course, is all the dietary advice. It makes it all the patient’s fault.