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We sit on the bench in the hospital corridor
next to the cafeteria, and we wait.
You know what waiting is.
If you know anything, you know what waiting is.
It’s not about you.
This is about
illness and hospitals and life and death…

(From: “What Waiting Is,” by Robert Carroll, 1998)

We are all forced to wait many times in our lives, and this week, I’ll be in the role of the loved one, the spouse, who will likely be experiencing the toe-tapping, check-my-wrist watches moments where I am rendered powerless to do anything but wait.  As my husband’s surgery date has drawn closer, the undercurrent of worry and restless nights has increased.  By day, I am calm and supportive, by night, the concern and anxiety rise to the surface as I lie in the dark.  Anyone who is living, as the patient undergoing surgery or the family member restlessly sitting in the surgical waiting room, knows the tension and anxiety of waiting intimately.  This kind of waiting, whether patient or family member, is torment, as writer Susan Gubar describes:

Hurrying up to wait is, of course, the fate of most patients, whether or not they have cancer and no matter how impatient they may be. But for cancer patients, waiting entails being enveloped in heightened fears about harmful protocols and the difficulty of eradicating or containing the disease. While I’m waiting, who knows what appalling cells are conspiring within my body to destroy my being? (From:  Well, “Living With Cancer: Hurry Up and Wait,” The New York Times, December 3, 2015).

But for the family members confined to the surgical waiting room, the experience of waiting during the surgery and for the news of the surgical outcome, the hands of the clock on the wall move slowly, despite how many times we check it or our watches.  It’s a different kind of agony.  

“Here, stress, anxiety, uncertainty and fear serve to make even the shortest of waits seem unbearable.  Families sit crouched forward in their uncomfortable chairs watching the door in hopes of preservation of a life or, unfortunately, sometimes by a less desirable outcome.”  –Kevin Campbell, MD, “The Psychology of the Surgical Waiting Room: Personal Adventures in Waiting,” 2012)

It’s been decades since I waited for more than an hour in a hospital waiting room for anything more than a loved one’s minor surgical procedure.  Thursday’s surgery will be much longer; a two-hour pre-op  process, the actual surgery estimated to be three and one half hours. Time will, I know, seem elongated, as if it stands still.  “Every watch is broken in the waiting room, ” Nurse Sonja Schwartzbach writes in a recent Huffington Post article, “better to count your blessings than to measure the seconds.”  Kevin Campbell, MD,  notes there are four common themes to the psychology of waiting:

  • Unoccupied time feels longer than occupied time.  I’m armed with novels and my computer to help the time pass.  Weather permitting, I may take a walk.
  • Anxiety makes waits seem longer.  Like it or not, we feel anxiety when a loved one is under the knife.  Endurance may be the only solution–that and deep breathing.
  • Uncertain waits seem longer than finite waits.  I have an estimate of the total time before my husband is out of surgery from the moment he is admitted for the pre-op procedure.  That helps, but I doubt it will have only minimum impact on the monotony, anxiety and fatigue of waiting.
  • Solo waits seem longer than group waits.  I expect this may well be true for many people.  I’m not one of them, preferring to keep my worry quiet.  The well-intentioned concern expressed as questions about next steps, treatment options, referrals to another specialist tend to exacerbate the anxiety I feel.

“For family members…the moment my patient is wheeled into the operating room is when loved-one-limbo begins,” Schwartzbach states.  “Everyone feels like an uninvited guest in an unfamiliar residence…the element of the unknown prevails…”  She describes the difference in the way strangers interact in a hospital waiting room:  some share laughs and jokes; some sit still and lifeless, waiting for a surgical update.  Others, and I am in this category, sit, observing the dynamic, waiting for what has been unraveled in one’s life to be stitched back together.  “Doctors use sutures and glue.  Writers use moments and moods.  One heals the body…the other heals the soul.”

Waiting has never been easy for me.  I am action-oriented, even impatient at times, yet I know that while time may seem unending on Thursday, I will have no choice but to accept what I cannot control, to let things unfold as they will.  It’s life– it requires I learn to wait.

But the faith and the love and the hope are all in the waiting.

(From The Four Quartets, by T.S. Eliot, 1943)

 

Writing Suggestions

  • Write about an experience of having tests, biopsies, or surgeries as part of your treatment for cancer.  Describe the waiting, what you felt and why.  You might try writing a poem that also captures the experience of waiting for results when the outcome could be either positive or negative.
  • If you are the partner or family member of a person who has undergone serious surgery, write about the waiting, the waiting room, the emotions that accompanied your wait in either narrative or poetic form.
  • If you have any advice to those who are going through treatments, tests and surgeries and waiting for the outcomes, what would it be.  Try writing an open letter to these individuals.

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He said it doesn’t look good
he said it looks bad in fact real bad.

(From:  “What the Doctor Said,” by Raymond Carver)

“Write about the moment when the doctor said, ‘Cancer.”  It’s usually one of the first prompts I offer in the beginning session of my “writing through cancer” workshops.  That moment of confirmation, the seconds in which a physician delivers the words that will, in an instant, change your life forever, is something everyone in the group shares, an event that evokes strong emotions as it gets written about and described.

I heard those words myself, or some version of them, over eighteen years ago after a routine mammogram, one that became, as the technician kept returning to the room to say, “I need to take a couple more images,” anything but routine.  But my diagnosis was not life threatening, not the sort that sends you home thinking about mortality.  This past week I heard the words again, only I am the wife of the man to whom the surgeon’s words were directed.  “Stage 3.  Kidney cancer.”  Surgery in two and one half weeks to remove one kidney and determine if the cancer has spread as, we could easily tell, he suspects.

I listened, intent on capturing everything discussed in my notebook, turning to study my husband’s face as together, we looked at the CT scan and listened to the surgeon’s explanation.  At one point, I felt the rush of emotion and forced myself to not cry, so that I could stay focused on how John was receiving the news.  I remembered Joan Didion’s words, “Life changes.  Life changes in an instant.”  And so it was changing, right then, in a brightly lit examination room of a surgeon’s office.

As we drove home, I said, “I always thought I’d be the first to go.”  For the past several months, our focus has been on me, my heart failure and treatment–a condition, ironically, the cardiologist believes was likely the result of damage to my heart caused by the radiation I had eighteen years ago.  My husband, on the other hand, has always been remarkably healthy.  His father, a physician, died just days before his 99th birthday, and it was always an assumption that John had his father’s genes and would likely live as long or longer.  Maybe he will yet; maybe not.

You want to forget, for things to be normal, the way they were… It’s like stepping into a swift river; the current of the ordinary grabs you, and before you know it you’re being buffeted against the rocks, on your way over the falls as you watch the shore recede.   It may all be over so soon, you worry in midstream, you won’t have time to do anything at all.–(D.L., cancer patient from a Writing Through Cancer workshop exercise)

“Well,” I said, quoting Gilda Radner, ‘It’s always something,’ isn’t it?”

“It is,” he replied, but I just didn’t expect this.”

“Nor did I,” I said, although we knew, from his family physician’s manner and urgency in getting him to a urologist and surgeon, that it was serious.  “But we’re at the stage in life when “somethings” like this are not unusual.”

“I guess so,” he said quietly.

We rode on, negotiating traffic in relative silence.   Alice Hoffman’s words, written after her cancer recovery that appeared in the New York Times, were rattling around in my head.  “ These are the chapters of your life that wallop you and teach you and bring you to tears,” she said, “that invite you to step to the other side of the curtain, the one that divides those of us who must face our destiny sooner rather than later.”(–August 2000).

That evening, I urged him to go to his weekly pool game as always, and I went ahead to have an early supper with a close friend of ours.  “We’re not going to dwell on this,” I said.  “We’ll keep living normally until we can’t.”

And that is what we are trying to do.  We’re quieter, yes, but on Thursday,  we awakened to a beautiful early autumn day and spontaneously decided to drive north from Toronto and visit the McMichael art gallery, which houses many works from Tom Thomson and the Group of Seven, paintings we both love.  The quiet beauty of the grounds, a breeze whispering through tall pines and the first signs of color in the deciduous trees along the route were a balm for both of us.  Last night we went with friends to hear a pianist we did not know, an extraordinary blind artist.  All of us were astounded and enthralled with his selections of  Schumann, Chopin, Beethoven and Prokofiev.

I remarked to a friend that I now realize how, in all the years I’ve been leading the writing groups for cancer patients and survivors, they have been my greatest teachers, preparing me, it now seems, to be able to face this new set of challenges and a husband’s diagnosis in a way that I could not have done many years earlier.  “Cancer,” poet Judy Rohm wrote, “is not a gift, but a lesson/ full of seeing now and loving presently” (“A Lesson,” in:  The Cancer Poetry Project, V. 1, 2001).  And it is living, with open hearts and enjoyment of the present, that we have chosen to do as we navigate through these next few weeks.  Writing in the preface of Survival Lessons (2015), author Alice Hoffman explained,

I wrote this book to remind myself of the beauty of life, something that’s all too easy to overlook during the crisis of illness or loss… I forgot that our lives are made up of equal parts sorrow and joy, and that it is impossible to have one without the other.  This is what makes us human…I wrote to remind myself that in the darkest hour the roses still bloom, the stars still come out at night.  And to remind myself that, despite everything that was happening to me, there were still choices I could make.  

Writing Suggestions:

  • Write about the moment you first heard “you have cancer.”  What thoughts and emotions raced through you?  What do you remember from that moment?
  • If you or your spouse was diagnosed with cancer, how did you choose to live each day and why?  What helped you get through the fears, worry, surgeries and aftermath?
  • What lessons has cancer taught you?  How successful have you been in putting those lessons into practice?
  • If a loved one or a close friend has been diagnosed, how have you shown your love and support?  What would you say to someone who is experiencing this with a family member or dear friend to help them through this kind of crisis?

 

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To be a person is to have a story to tell. — Isak Dinesen

Storytelling has been an integral to being human for thousands of years.  Our stories have given us a way to engage, to share our experiences and find, in one another’s stories, themes and experiences we share.  Storytelling began, in part, as an oral way of helping people make sense of their worlds.  They were the mechanism by which traditions and wisdom passed from one generation to another.  “There have been great societies that did not use the wheel,” author Ursula LeGuin once said, “but there have been no societies that did not tell stories.”

Tell me a story.

In this century, and moment, of mania,

Tell me a story.

(Robert Penn Warren, Tell Me a Story,” in New and Selected Poems 1923-1985)

Whether oral or written, what is it about sharing our stories that makes them so important?  Storytelling, as several researchers suggest, is a powerful tool for patients and healthcare providers alike.  It provides the patient a way to give voice to the experience of illness and, in turn, to begin to confront their illness, questions of care and mortality.  There’s plenty of evidence from the significant body of work on writing and healing by James Pennebaker, PhD, showing that creating a story about one’s experiences in life can result in improved physical and mental health in many populations, whether written and verbal.   For example, A 2011 study cited in the Annals of Internal Medicine showed that a storytelling intervention produced substantial and significant improvements in blood pressure for patients with baseline uncontrolled hypertension as effectively as taking additional medications.   Moreover, research now suggests, the skills of storytelling,  can result in improved health communication between doctor and patient.

“Telling and listening to stories is the way we make sense of our lives,” according to Dr. Thomas Houston, lead author of the hypertension study.  “That natural tendency may have the potential to alter behavior and improve health.”  Interviewed after the study in a 2011 New York Times article, he said, “Storytelling is human.  “We learn through stories, and we use them to make sense of our lives.  It’s a natural extension to think that we could use stories to improve our health.”

 Their stories, yours, mine—it’s what we carry with us on this trip we take…we owe it to each other to respect our stories and learn from them.–Advice to a medical student by William Carlos Williams, physician and poet

Patient stories have begun to be recognized as an important aspect of the medical experience, thanks to the work of Rita Charon, M.D.  She created the term, “narrative medicine,” a medical practice using patient stories in clinical practice, research, and education as a way to promote healing.  The growth of expressive writing research ignited by James Pennebaker’s research also fueled the recognition that stories, written and shared, help us heal.

Stories offer insight, understanding, and new perspectives. They educate us and they feed our imaginations. They help us see other ways of doing things that might free us from self-reproach or shame. Hearing and telling stories is comforting and bonds people together….Being able to narrate a coherent story is a healing experience…. stories keep us connected to each other; they reassure us that we are not alone.–Miriam Divinsky, MD, Canadian Family Physician, 2007.

In the shock of a cancer diagnosis or the weeks of surgeries and treatments that follow, you may feel lost, even lonely.  You may feel as if you’ve even been robbed of your voice, that you have nothing to say.  But try to write.  It doesn’t matter, at first, if you do little more than rant, pouring out your emotions on the blank page, but gradually, you’ll find a story begins to emerge, and you begin writing more and more.  Writing helps you heal, and it helps you rediscover your life, one that is larger than cancer.

In my writing groups, it’s the stories of the cancer experience that first get written.  Yet, while cancer may be the starting point, as our weeks together continue, other stories emerge, ones about a person’s whole life–stories of  love, loss, family, childhood, the joys and sorrows that make each person uniquely human.  Writing  stories from other chapters of your life offers a way to understand and make sense of the whole life you’ve led, not just the chapter called “cancer.” Sharing them affirms your life, your legacy.  They say:  “This is my life.  This was what I experienced.  This is important to me.  It is why I’ve become the person I am.”

I never tire of the stories written and shared in my writing groups.  Everyone’s way of telling their stories are unique, and despite the common themes of a cancer diagnosis, those stories continue to humble and inspire me, even after nearly twenty years of leading expressive writing programs.   I remember them long after the workshops end, even after some lives are sometimes lost to cancer.  As I recall their stories, I see their faces.  I remember their lives.  “Death,” writer Jim Harrison wrote, “steals everything but our stories.” — (From:  Larson’s Holstein Bull, in From: “Larson’s Holstein Bull,” In Search of Small Gods, 2009)

It’s why your stories matter.  We are our stories.  They shape us and act as the lens through which we see the world. Through story, we make sense of our lives, reclaim our voices, and even learn our stories have the power to touch others’ hearts.  We create community out of shared story.  Cancer may bring people together to my writing group,  but it’s in the stories written and shared that we discover the glue that binds us together.

Stories—the small personal ones that bring us close as well as those of the larger world—foster compassion.  In the telling of our personal lives, we’re reminded of our basic, human qualities—our vulnerabilities and strengths, foolishness and wisdom, who we are…, through the exchange of stories, [you] help heal each other’s spirits. — Patrice Vecchione, Writing and the Spiritual Life

Whether big or small, extraordinary or ordinary, of illness or of health, laughter or sorrow, your stories matter.  Write them.

Writing Suggestions:

  • Begin with something simple, like “the moment I first heard the words, “you have cancer,” I…  Try remembering as much detail as you can from that moment:  the quality of light, where you were sitting or standing, the doctor’s voice, what you felt or said…
  • Try beginning with the first line of someone else’s poem, such as “As if your cancer weren’t enough…” (from “Guinea Pig, by Julie Cadwallader-Staub, Cancer Poetry Project, V. 1, 2001) or “The day I finished chemotherapy…”  (from “Reminiscence” by Ruth M. James, Cancer Poetry Project, V. 1, 2001) or “No.  I don’t want to hear about your uncle…”  (from “The Cancer Patient Talks Back,” by Molly Redmond, Cancer Poetry Project, V. 1, 2001)
  • Make a list of firsts:  the first kiss, first haircut, first grade, first friend, first dentist appointment, first time you walked home alone from school…    Write the story of a first.
  • Write one of your favorite family stories.
  • Write about a teacher, doctor or coach who first inspired you to do more than you thought you could.
  • Write about something that made you angry, sad, frustrated, or giggle…
  • Write about losing hair during chemotherapy or nausea or the infusion room.  Perhaps there’s a poem lurking there.
  • Write about something that always makes you laugh when you remember it.
  • Write about what it’s like to write.

The point is, the smallest thing can bloom into a story, take you to memories and events in your life that matter to you. Start there.  Set the timer for 15 minutes.  Write nonstop until it rings.  Then read what you’ve written.  Chances are, there’s more to write.  Try the same exercise the next day or later in the week.  Keep writing.  Your life, your stories matter.

 … in order to make you understand, to give you my life, I must tell you a story—and there are so many, and so many—stories of childhood, stories of school, love, marriage, and death…–Virginia Woolf

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In one way or another, cancer impacts virtually all of our lives. On an individual level, it is a life-transforming experience that often challenges the mind, heart, and spirit of patients and family members as deeply—if not more deeply—than it challenges the physical body—Jeremy Geffen, MD, The Journey Through Cancer: Healing and Transforming the Whole Person, 2006

Cancer, or any other life threatening illness or trauma, changes you.  Not only is your life altered in different ways, even if you are pronounced “cured” or “healed,” you quickly discover that returning to the self, to the life you knew before cancer or trauma occurred, is virtually impossible.  Not only has your body been altered by treatment and surgeries, the way you think about yourself and your life has changed, whether you see yourself as “living with” cancer, “a survivor,” “in remission,” “a warrior”–as well as  how you experience people and situations that were part of your daily life before cancer.

You’ve suddenly been thrust into the necessity of revising the life you have known, the one you’ve been living.  Revision is not just reserved for writers in the process of creating a story or poem.  It’s a necessity for life.  Yet when you are challenged to change the way you live, it can be confusing and difficult to understand, let alone learning to accept some of the necessary changes in your life.  You’re thrust into a journey you wouldn’t have chosen to travel, but, as Mary Oliver describes in her poem, “The Journey,”

You knew what you had to do…

and the road full of fallen

branches and stones.

But little by little…

the stars began to burn

through the sheets of clouds,

and there was a new voice

which you slowly

recognized as your own

that kept you company

as you strode deeper and

deeper

into the world…

You knew what you had to do…

(In:   Dreamwork, 1994)

In an interview by William Young, appearing in a 1993 issue of The Paris Review, William Stafford was asked to comment on his choice of a title of one of his books about writing: You Must Revise Your Life.  “I wanted to use the word revise because so many books about writing make it sound as though you create a good poem by tinkering with the poem you’re working on. I think you create a good poem by revising your life… by living the kind of life that enables good poems to come about.”

Several years ago, after the death of my first husband and the years spent being a single mother, I felt I was ready to unearth the story of that particularly painful and traumatic chapter of my life.  I began by starting a memoir, one I ultimately decided to turn into a novel.  I sent the manuscript to a few respected writers for review, and as it needed, revised multiple times.  Yet it took several months of rewriting and revision to acknowledge that I was still skating on the surface of the story, overly concerned with descriptive details, grammatical nits, and developing a rounded protagonist, who was, in real life, me.  (I never succeeded with her–my protagonist was just too “good.”)  The writing dragged on, through four complete revisions—or rather, revisions I thought were complete.  Yet something wasn’t working. The story was no longer my story, nor was it the real story “It’s become a fairy tale,” I complained to my writing buddies, and I put the novel aside in frustration.  I’d lost sight of my story, and in the process, had not written myself “into knowing,” as author Patricia Hampl once said about the writing process.  I was farther away from the truth, the real meaning in my story than ever.  I put the manuscript aside and faced the fact that the real revision was one of coming to terms with my life–before and after the trauma:  what, in me, had changed and how had it changed how I now approached the life I had now.  I had to do a complete re-visioning of my story.

I’ve been working on my rewrite, that’s right
I’m gonna change the ending
Gonna throw away my title
And toss it in the trash
Every minute after midnight
All the time I’m spending
It’s just for working on my rewrite…

(“Rewrite,” by Paul Simon, from the album, So Beautiful or So What?” 2011)

I discovered that there was much more to the process of writerly revision as Simon’s lyrics suggest, getting beyond the “happy” ending and digging deep for the meaning of those events in my life.  Simon hints at that in his song, and it’s likely one of the reasons his “Rewrite” lyrics were published in a recent edition of The New Yorker under the heading, “Poetry.”  Listen carefully, and you realize the real story is of a Vietnam vet who’s had hard times, and his rewrite is an attempt to create a happy ending for himself.

I’ll eliminate the pages
Where the father has a breakdown
And he has to leave the family
But he really meant no harm
Gonna’ substitute a car chase
And a race across the rooftops
When the father saves the children
And he holds them in his arms…

We all fantasize about how our lives might have been different, “if only if I’d done ___ instead of …,” but that’s the stuff of dreams and wishes, of fiction instead of reality.  Happy endings aren’t like the ones we remember from childhood fairy tales.  Life–cancer, loss, trauma, hardship–these events challenge us to revise our lives, to learn to honor our uniqueness, even our struggles and losses, and learn from them.  Only then can we truly begin a new script for the life we have ahead of us.

At a breast cancer rally she rises

Above sixteen positive lymph nodes

To tell the world that cancer is a wakeup call

That resonates to the cell level…

Cancer is not a gift but a lesson

Full of seeing now and living presently.

(“The Lesson, by Judy Rohm, in The Cancer Poetry Project, V.1, 2001)

      …”cancer need not be a person’s whole book, only a chapter. Still, novelists know that some chapters inform all others. These are the chapters of your life that wallop you and teach you and bring you to tears, that invite you to step to the other side of the curtain, the one that divides those of us who must face our destiny sooner rather than later.”  — Alice Hoffman, NYTimes, August 2000.

Cancer, any serious illness or trauma can teach us to revise our lives in a way that we are more “alive” to the world, to paying attention to what’s in front of us, discovering gratitude in slowing down and being fully present to our daily lives.  Yes, we have changed, but we still have the opportunity to be considered in our choices, to make certain that however long our lives may be, we learn to live fully and with gratitude for each day we’re given.

As I write this post, I recall the first weeks several years ago, after I’d finished my doctoral research (a study of instructor thinking during instruction in a professional school of landscape architecture).  One of my “subjects,” a particularly gifted instructor wrote a short account of his experience in the study.  Entitled “The White Rat Talks Back,” he began his narrative with an old Fleishmann’s margarine advertisement, “I’m just a guy … who had a heart attack.  I’m okay now, but I learned a lot.”

“I’m okay now, but I learned a lot.”  Well, as Frank Sinatra once sang, “that’s life (that’s life)…  We all have chapters–those difficult experiences–that challenge us.  Some we remember fondly; others are the ones we don’t wish to repeat, but like it or not, we have to face the fact that our lives have been altered in profound ways,  even in ways we never imagined nor wanted, and we are left to re-consider and revise the ways we live from here on out.   How have you challenged to revise your life, your way of seeing the world, by cancer, by any life hardship?

 

Writing Suggestions:

  • Imagine you had the power to rewrite your life, as the subject in Paul Simon’s song, “Rewrite” dreams of doing. What would be your “happy” ending?
  • What have you learned from the painful chapters of your life?
  • As you look back on the difficult times in your life, before cancer and after, how have you revised your life?  What changed?  What didn’t?

 

 

 

 

 

 

 

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With only the pages of People

and Time for amusement, who would not

feel afraid?

(From:  “In the Waiting Room,” by David Bergman,  Poetry, December 1986)

We are all forced to wait more than a few times in our lives. Those toe-tapping, check-our-wrist watches moments are minor irritations that we all endure.  We wait in lines for tickets or to get through security at the airport.  We wait to be served in restaurants or for a train in the subway station.  We wait for calls or letters from employers, editors or loved ones, for acceptances to schools, or the results of medical tests.  And we wait in hospital or physician’s waiting rooms for the appointment scheduled well over an hour earlier, thumbing impatiently through outdated magazines and checking the clock a dozen times, unable to concentrate on much of anything but the waiting.

Three of my mornings last week were spent in hospital waiting rooms.  I sat with other patients and waited for my name to be called for tests, blood work, and physician consultations.  Thankfully, most of my appointments were completed without too many delays, but occasionally, as I experienced earlier this summer, the time spent in a waiting room can be extreme, testing my patience, ability to “hear” what a physician says by the time he finally walks into the examination room, or undermining the sense of confidence I might have felt about his medical advice and conclusions. In that instance, the impact of an extremely long period of waiting was so extreme I requested a second opinion, which occurred last week.  Thankfully, this physician was on time, listened patiently and took the time for a thorough assessment.  I was armed for a wait, however, arriving with a novel to read and a notebook to write in.

Dr. Sheila Wijayasinghe, writing in a recent Globe and Mail column, offered a physician’s perspective on the time patients’ spend waiting.  “No doctor likes running behind,” she wrote, “and most try to keep on time out of respect for patients’ schedules and busy lives. But even with the best of intentions, we end up running behind due to unpredictable circumstances. She offers examples of the common reasons that lead to patients’ waiting.

.  Getting a call from a specialist that a patient has been admitted to hospital.

.  Urgent walk-in patients arriving who need to be seen quickly

.  A patient arriving late for her appointment

.  A patient with a condition requiring additional time

.  And in some cases, double or triple booking in an attempt to accommodate all patients needing to be seen.

Yet, no matter the reasons, there is a kind of waiting no one finds easy, the kind of waiting punctuated with worry and sleepless nights, waiting that may become a matter of life and death. Anyone diagnosed and living with cancer knows this kind of waiting intimately.  In the course of treatments and recovery, waiting can be torment, as writer Susan Gubar describes in “Living With Cancer: Hurry Up and Wait.”

As a cancer patient, you endure “waiting for a doctor, waiting for radiation, waiting for the delivery of chemotherapy drugs, waiting through interminable infusions or transfusions, waiting for a scan or a biopsy, waiting for the results of a scan or a biopsy, waiting (sometimes starved and unclothed on a gurney in a hall) for surgery… Hurrying up to wait is, of course, the fate of most patients, whether or not they have cancer and no matter how impatient they may be. But for cancer patients, waiting entails being enveloped in heightened fears about harmful protocols and the difficulty of eradicating or containing the disease. While I’m waiting, who knows what appalling cells are conspiring within my body to destroy my being? (In:  “Well,”  New York Times, December 3, 2015)

A 2011 research study reported in The Annals of Surgery found “wait times for cancer treatment have increased over the last decade… potentially resulting in additional treatment delay…Although cancer incidence rates have seen modest declines during the last decade, the overall number of patients diagnosed with a solid organ malignancy has been increasing, likely due to an increasing elderly population.” What’s more, waiting can have more negative impact that simple frustration.  An extended interval from diagnosis to treatment, the researchers concluded, adds to patient anxiety, leads to gaps in care, and perhaps affects disease progression.

Participants in my expressive writing groups often express frustration in the amount of waiting involved to be tested and then receive the results of those tests.  If you’ve been faced with the anxious period between any test for cancer and its results, Muriel Fish’s poem, “In Cold Dreams Before Dawn,” captures the  how waiting can escalate fear and worry:

…The radiologist

Enters, snaps the x-ray film into a wall unit lit with

brisk efficiency…

…the bite of the biopsy needle reminds me

most lumps are benign…

…I wait, remembering long

Bittersweet days sitting with my mother and sister,

each with their own small malignancy and dead within three years.

(In:  The Cancer Poetry Project, V. 1, 2001)

Robert Carroll, MD,  a UCLA psychiatrist, utilizes poetry to help patients cope with illness and struggle.  In a 2005 paper, “Finding the Words to Say It:  The Healing Power of Poetry,” he explored how poetry can help us find the words to express trauma, illness, death and dying.  “What Waiting Is,” one of the featured poems, captures, for me, the emotions that often accompany the waiting room experience of parents, spouses, and family members.

We sit on the bench in the hospital corridor
next to the cafeteria, and we wait.
You know what waiting is.
If you know anything, you know what waiting is.
It’s not about you.
This is about
illness and hospitals and life and death…

In matters of death and dying, we may be forced to do little but wait while our emotions run rampant.  Finding ways to express pain and emotion by writing or discovering meaning in others’ poetry and prose can have therapeutic benefits.  Certainly, it has for me.  Poetry has helped me put words around tumultuous emotions more than once, but this poem, “What Waiting Is,” captures the emotions I felt in the hours preceding the death of my parents, one from lung cancer and the other from Alzheimer’s.

In the bathroom you look in the mirror.
What do you see?
Your father’s sad face?
Your mother’s eyes?
You catch the water cupped
in your thickened hands, splash it on your face,
and hope against hope you can wash it away—
the aging brown spots, the bags,
the swelling truth of waiting—…

you get home to see the light
flash on your answering machine…

you push the button,
and it’s your sister’s voice,
but it’s choked,
and she can’t speak.

 Waiting never seems to get easier, although you may, as I have, become more “seasoned” at doing it as your time in waiting rooms increases.  But there are inevitable times, particularly in the midst of any serious illness, trauma or suffering, that the waiting we must do seems endless.  Perhaps learning to wait, like it or not, is a life lesson we are forced to endure–and to master.

I recall the words of T. S. Eliot in The Four Quartets, “I said to my soul, be still and wait without hope, for hope would be hope for the wrong thing; wait without love, for love would be love of the wrong thing; there is yet faith, but the faith and the love are all in the waiting…”  (East Coker, The Four Quartets, 1940)

The faith and the love and the hope are … in the waiting.  These words make me reconsider why life makes us wait.  I am still learning, even after all these years, to accept what I cannot control, to let things unfold as they will.  “This is life.  You learn to wait.”

Writing Suggestions:

Like you, I’ve sat in many waiting rooms, worried and anxious, as a child or spouse underwent surgery, or waited for the call I dreaded but knew would come as my parents were dying, and waited for the results of echocardiograms or a biopsy.

  • What has been your experience of waiting?
  • Think about all the times you’ve waited for something or someone, whether in a medical waiting room or at another time in life, whether worrisome, painful or even humorous (once, of course,  the waiting ended!)
  • Write about what it’s like to be caught in the “helplessness” of waiting.

 

 

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August 6th, and I remember that on this day, my father was born 100 years ago.  I also remember how his death from lung cancer twenty-five years ago left his family torn apart with sorrow and grief, some of the wounds never fully healed.  Remembering how deeply we felt the loss of our father got me to thinking about the impact of losing a loved one.   I recalled when, on a summer’s evening some time ago, my husband and I ran into a friend at a jazz concert.  Divorced in his 50’s, he longed to find a partner to share the rest of his life and had begun dating in earnest again after a long hiatus.  He introduced us to his evening’s date, an engaging woman we chatted briefly, learning that she had lost her husband a year or so earlier.

After his companion left to find the restroom, our friend turned to me and sighed, “Another widow.”  He shrugged his shoulders and added,  “I don’t if I’m ready for this,”  “this” meaning the emotional roller coaster that often accompanies new romances or relationships after a spouse’s death.

“Be patient,” I said, “it takes so much longer than you think it will to recover from a husband’s death.”  I was remembering how, in the year after the sudden death of my first husband, I had begun dating again several months later , hoping it might ease the constant heartache I felt.  It didn’t work.  I made poor choices in the process before I acknowledged I was simply not ready to begin any new relationship.  Healing had its own time schedule, and it couldn’t be rushed. Eight years later, I met and later married my current husband, but even in our early years together, I experienced an exaggerated fear of loss.

Whether the loss of a spouse, a child or a friend from serious illnesses like cancer, ALS, heart attack, or other unexpected tragedies, much is written about dealing with the loss of a loved one yet it’s not something  well understood by those who haven’t experienced it.  Some may think of grief as a single instance or short time of pain or sadness in response to loss, but the American Cancer Society reminds us that the real process of grieving lasts much longer.

When we are in grief and mourning, it can be hard on friends or acquaintances, even our family members.  Our North American society isn’t as adept at allowing grief to take a normal course as some other cultures do.  It’s painful to see someone we care about dealing with the heartache and sorrow accompanying the death of another, but it’s very important the bereaved feel supported through the process and are allowed to express their grief.  It’s why we have bereavement support groups, therapists and pastors who specialize in grief counseling.  Grief, although similar to us all in a general way, is experienced differently by everyone.  It’s  important to accept and honor the way in which a bereaved person chooses to express sorrow and grief.

This morning, my husband and I talked about the process of grieving when a loved one’s life ends, recalling the agonizing four year battle with bladder cancer my husband’s brother in-law endured before he finally died.  I remember telephoning my sister-in-law the day after his death, rehearsing ahead what I could say that didn’t sound trite.  The telephone rang once, twice and two more times before she answered it.

“Hello?” I knew immediately she had been crying.

“I’m sorry,” she said.  “I just went into his room and saw how empty it is, and then…”  She began sobbing again. “He’s gone, Sharon.” Her voice was heavy with grief and exhaustion.  “He’s been my life for sixty-four years.”

I could only murmur, “Yes, I know…” and think about what it meant to be together for so long.

It is hard to give up after months of making lists,

phoning doctors, fighting entropy.  But when the end comes,

a bending takes over, empties the blood of opposition

and with a gentle skill, injects a blessed numbness…

According to the American Cancer Society,” studies have identified emotional states that people may go through during grief. The first feelings usually include shock or numbness. Then, as the person sees how his or her life is affected by the loss, emotions start to surface. The early sense of disbelief is often replaced by emotional upheaval, which can involve anger, loneliness, uncertainty, or denial. These feelings can come and go over a long period of time. The final phase of grief is the one in which people find ways to come to terms with and accept the loss.”

Perhaps this surrender foreshadows my own old age

when I have raged to exhaustion and finally have to go.  For now,

the numbness wears off.  I drive to the market, cook my own food,

take scant note of desire

with no one to consider or contradict my choices.

Something in me will never recover.  Something in me will go on.

(From “Numb,” by Florence Weinberger, in The Cancer Poetry Project, 2001)

After sixty-four years together with her husband, my sister-in-law died barely a year later from a recurrence of inflammatory breast cancer after a five year remission.  Life without her husband, despite having her adult children and grandchildren nearby, was hard for her without her husband, who had been the primary decision maker in all their years of married life.   She seemed to grow increasingly tired and depressed, as if her will to live was fading.  As many psychologists and psychiatrists know, there are few things in life more likely to lead to depression depression than losing a spouse, especially for seniors.

More than a few research studies have demonstrated that spousal bereavement is a major source of life stress and not infrequently, leaves people vulnerable to other problems like depression, chronic stress, and reduced life expectancy.   Studies conducted around the world that shown that the rate in mortality often goes up among grieving spouses after their loved one dies. One such study conducted in Israel found the risk of death during the first six months after losing a spouse increased by 50%. The phenomenon is common enough that it even has a scientific name:”Broken Heart Syndrome,” which is defined as an impermanent heart condition caused by stressful situations, like the death of a loved one.

All lives are accompanied, at some point, by mortality, but some losses are far more difficult to accept than others.  Death from a protracted illness, at least, has a cause that we understand and allows the patient and the loved ones time to come to terms with the inevitability of death.  But the unexpected losses, like the sudden death of a spouse or child, comes as a complete shock, defies our sense of what is “supposed” to happen in life, and can complicate and extend the grieving process for years.

Life changes fast.
Life changes in the instant.
You sit down to dinner and life as you know it ends.

(Joan Didion, The Year of Magical Thinking)

My own emotional state in the aftermath of my first husband’s drowning involved a complicated grieving process that took years to fully heal.  But I also remember how his parents, now deceased, and two siblings never fully recovered from losing a son, an older brother.  Nor did my daughters, then nine and ten, ever fully recover from their father’s death.  Even now, over 30 years later, remnants of grief and loss still surface from time to time.

In the turbulent days following my first husband’s death, a friend offered  me the poem, “And Death Shall Have No Dominon,” by the Welsh poet, Dylan Thomas,  to use in honoring my husband’s death with his family and closest friends.  Thomas’s poem celebrates the undying and everlasting strength of the human spirit, and reading and sharing it provided some solace in the face of tragedy, reminding me that even in death, our loved ones are not completely lost to us.  We carry them in our hearts, our memories and our stories.

And death shall have no dominion.

       Dead men naked they shall be one

       With the man in the wind and the west moon;

       When their bones are picked clean and the clean bones gone,

       They shall have stars at elbow and foot;

       Though they go mad they shall be sane,

       Though they sink through the sea they shall rise again;

       Though lovers be lost love shall not;

       And death shall have no dominion.

(From:  Twenty-Five Poems, 1936)

Writing Suggestions

This week, consider the process of grief and mourning:

  • Have you lost a loved one to cancer or an unexpected tragedy? Write the memory of the day someone you loved died.
  • What did you experience in the aftermath  of death? Write about the emotional ups and downs of grief.
  • What helped you deal with the loss and gave you the strength to go on? Write about the gradual process of healing from the death of a loved one.
  • Are you currently faced with a terminal diagnosis or is your loved one? Describe the process of grief and what, as you face a shortened life or potential loss of your loved one, gives you solace and the strength.
  • Write a favorite remembrance of a loved one who has passed on. What brings a smile to your face when you remember the person?  What qualities or traits do you remember most fondly?

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Earlier this morning I participated in a conference call with a group of medical professionals in the Canadian Heart Failure community, a group tasked with creating a joint paper on Heart Failure care guidelines in Canada.  I was invited to represent a patient perspective, but admittedly, I was taking copious notes in a conversation that, like most specialties, has its own lingo–acronyms and terms unique to the field but for me, akin to a foreign language.  At the conclusion of the call, the group was divided into sub-groups, each tasked with writing and submitting questions to be included in a national survey on heart failure treatment, care and transitions.   I was assigned to explore and formulate questions dealing with transitions for heart failure patients.

Ironically, just last week, I’d been part of a survivors’ retreat, “Transitions,” at Gilda’s Club here in Toronto, where I led a writing  workshop on the process of transitioning from patient to “survivor.”  After this morning’s call ended today, however,  I wondered how “transition,” in heart failure terms, differed from the way in which it was used in our workshop last week.

At the retreat, we used it synonymously with becoming a cancer survivor–someone who has been, if not cured, given a number of years of being “in remission.”  We all, of course,  still hope for a cure for cancer,  and new immunotherapies have given us more hope one will be found.  Yet heart failure, by contrast,  is a condition that isn’t cured by drugs, rather they are used to improve heart functioning for as long as possible.  Inevitably, the prognosis for heart failure patients has the upper hand, and the heart continues to weaken.  As I was assigned to explore questions for the category of “transitions” in a proposed model for heart failure care in Canada, I couldn’t help but think about the different implications what “transitions” between the way we’d used it a week ago at Gilda’s club and how, in this new effort to define a model of care for heart failure, a somewhat different meaning is implied.

Heart Failure, which I have, is a growing — and all too silent — epidemic according to Dr. Paul Fedak, a cardiac surgeon at the University of Calgary.  He explains: “Heart failure is the end result of all cardiac disease.  You get heart failure from everything that goes wrong with your heart–all roads lead to heart failure.”  While cancer remains the leading cause of death in Canada, heart disease is the leading cause of premature death for women.  In the US,  heart disease is the leading cause of death for both men and women with cancer running a close second.    Yet I cannot help but consider the number and variety of support programs for cancer patients that are far more developed, available and varied in both countries. than resources for heart disease patients.

I’ve been part of the cancer community for nearly twenty years, and gratefully so.  When asked to introduce myself on this morning’s call, I said that I was someone whose practice has been focused on individuals living with cancer by supporting their emotional, spiritual and creative well-being through encouraging the writing and sharing of their illness stories.  The thing is that the prevalence of a variety of supportive care programs, such as we have in the cancer community, are scant by comparison in the heart failure community, although there are some recent efforts, like the HeartLife Foundation of Canada, working to provide information and resources as well as create a sense of community through social media.

I have come to realize now that my work with cancer patients and survivors has been my greatest teacher in  understanding the impact of serious or terminal illness on our lives.  My personal experience with cancer was not a  life threatening one.  But the negative side effect of my treatment didn’t make itself known until my diagnosis of heart failure eight years later.   It wasn’t until that incident,  perhaps, that I understood how the fear of premature mortality that can inhabit anyone’s mind who is diagnosed with cancer.  Heart disease and stroke kill seven times as many women as breast cancer, for example, and in Canada, a woman dies of heart disease in Canada every 20 minutes! According to the Canadian Heart and Stroke Foundation, women are five times more likely to die from heart disease than breast cancer. But it turns out that there are issues in research and treatment of heart disease and failure when it comes to gender.  Two-thirds of heart disease clinical research still focuses on men.  “Women are under-researched, un-diagnosed and under-treated, undersupported and under aware,” according to Yves Savoie, CEO.   “It’s unacceptable, and the situation has got to change–we need to smash this glass ceiling.”

Ironically, my cardiologist believes my heart failure was likely the result of radiation therapy I received for DCIS in my left breast eighteen years ago.  I was given “gold standard treatment,” as my oncologist described it, yet I didn’t feel like I was truly a cancer patient.  And I wasn’t, not really, because a short time later, DCIS was reclassified to “pre-cancerous,” so it was only after I collapsed  while walking my dog in December of 2008 and was diagnosed with heart failure, that I truly understood the words of Alice Hoffman, novelist, reflecting on her cancer experience:        

“Cancer need not be a person’s whole book, only a chapter. Still, novelists know that some chapters inform all others. These are the chapters of your life that wallop you and teach you and bring you to tears, that invite you to step to the other side of the curtain, the one that divides those of us who must face our destiny sooner rather than later.” (“Writers on Writing, “New York Times, August 2000).

Cancer treatments have gotten progressively more refined and better, and now with new advances in immunotherapy, there is even more reason to have hope for a cure.  Heart failure treatment continues to improve as well, although it isn’t about cure as much as it is in medication that can help to improve, for as long as possible, the heart’s functioning,  but the slope is still gradually downhill, and one’s “destiny” is never far from consciousness.

What strikes me now, as I continue to go to my cardiology appointments, have tests, receive new or increased medications and talk with my cardiologist (who is truly exceptional) is how solitary a journey having heart failure has felt like to me when I  consider the supportive care and community organized around  individuals living with cancer.

Or have I been in denial?  Perhaps, to some extent, but for the seven plus years I was being treated for this condition in California, other than one “educational” workshop on heart failure, which failed to do much to enlighten me, I never encountered or was told about other programs supportive to heart failure patients.  While I read research studies on heart failure, I do it in small doses, because my sleep is woefully interrupted by the facts and statistics.  Yet I am gratified to be pulled into action concerning the condition I and so many others have, or as my cardiologist would call it, “engagement.”  In fact, at my very first appointment with her back in December of 2017, she asked, “Do you want to just be retired or do you want to be engaged?”

I was perfectly clear.  “Engaged,” I said. “I have no idea what just being retired would look like.”

“Well, we’re going to get you engaged,” she said emphatically.

And she did.  Four months later, I sat in a group meeting on Heart Failure Access in Canada, all the while wondering how on earth I could possibly contribute to the discussion in any meaningful way.  Yet perhaps now I’m realizing I can be helpful in offering a patient perspective as the committee works  to define an optimal model for Heart Failure Care in Canada.  And that has a lot to do with the past 18 or so years of facilitating expressive writing groups for men and women with cancer.  A vocation, I’ve said, that has always been dear to my heart…little did I realize how much.

Perhaps all that I have learned, cherished and experienced as part of the cancer community, and most of all, from the honesty and vulnerability of those who have come to write and share their stories and lives with me in the writing groups, will help be me a better patient and participant in this community of cardiologists, nurses and heart failure patients.

And perhaps I won’t feel, as I have in the past, as lonely in the journey of being a woman living with heart failure.

My outlook is it’s not how long you live, it’s what you put into your life.Simon Morgan, 58, ( dilated cardiomyopathy;  heart transplant patient, UK)

Writing suggestions:

  • Cancer or any serious illness can be a great teacher.  What have you learned from cancer or other major hardship?
  • In your cancer experience, think about the kinds of support and help you were given.  What was most helpful?  Describe it and explore why you found it as valuable as you did.
  • Think about transitions–the many times in your life you’ve experienced that “in-between” period during change from one part of your life to another.  What meaning does “transitions” imply for you?  Why?

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