What Cancer Patients Can Teach Medical Students

When I began my cancer treatment almost eight years ago, I didn’t fully understand the crucial role that patients have in the education and training of medical professionals. I was new to the realm of cancer patients, so at my initial consultation with my oncologist I didn’t anticipate that I would be taken to a conference room. I certainly didn’t expect that our first meeting would include several residents and doctors-in-training.

Later, when I had the opportunity to read the orientation booklet that I was given, the formal relationship between gynecologic cancer patients and student doctors at my hospital started to become clearer to me. Stated unambiguously was the following information:

The Tom Baker Cancer Centre and Foothills Hospital form part of the University of Calgary teaching facilities and you can, therefore, expect to have doctors-in-training involved in your care. They work to assist your specialist, who supervises all their activities according to their level of competence. They may also participate in routine check-ups and will report to the specialist on your behalf.

Throughout the course of my cancer journey I’ve discovered how much we, as patients, help facilitate the transformation of young medical students into proficient and empathetic health care experts. Here are some of the most important lessons that I feel we teach physicians in training.

People with cancer are brave and have a remarkable capacity for resilience. Women with ovarian cancer courageously put up with a terrible illness and refuse to give up in the face of adversity. Whether we are talking about cancer, disabling cardiovascular disease or other chronic illnesses — patients often inspire young doctors with their bravery and determination. For example, I could tell that the women on my cancer unit were having an impact on the residents when they made rounds each day. Sometimes they would witness women surrounded by their visiting loved ones, still managing to laugh, smile and remain optimistic, despite the horrendous circumstances.

Life can change in an instant. A chronic or serious illness such as cancer often strikes out of the blue. One minute everything is okay and you seem not to have a care in the world and then everything is turned upside down by a shock diagnosis. Before I was diagnosed with cancer, I had no true sense of how precarious our existence is or of how uncertain my future had probably always been. Then, on November 3, 2011, I learned that the direction of my entire life could change in just a single day. We help young residents to remember that becoming a patient with a life-threatening illness can happen to anyone in an instant, even them.

As a doctor you should know how to communicate effectively with your patients. Illness can suffocate even the bravest of souls. Diagnosis and procedures can be complicated, and a patient often feels vulnerable and confused when they are at their oncologist’s office or visiting the cancer centre. Personally, I found this to be true regardless of my reason for being there, it didn’t matter if it was for chemotherapy, an exam or a follow-up. From the perspective of an anxious cancer patient, the absolute worst thing that could happen would be for me to walk out of an appointment without understanding a word my doctor said. It’s a doctor’s responsibility to explain everything in a way their patient can understand. As a physician, you shouldn’t get upset or become annoyed if you are asked to repeat details of the patient’s treatment plan or to clarify instructions.

As a doctor you should be able to empathize with your patients. To me the best doctors take time to connect with their patients, and they truly care what we are thinking and feeling. If your patient is feeling cold, arrange for a blanket. If they’re thirsty, get some water. Without addressing these underlying human needs, impressive hospital designs and state-of-the-art equipment are useless. For most patients the fancy ceiling and lighting are insignificant compared with medical staff who will treat them with compassion and dignity. I have one particular memory from during my rigorous cancer treatment.

It was in the middle of the night and I had already spent several grueling hours in the emergency room when I was finally sent for a CT scan. The doctor performing the scan was very empathetic toward me. He immediately noticed that I appeared cold and nauseous, so he offered me a blanket as well as a small basin just in case I was sick. Next, he saw that my IV had been put in poorly by someone in the ER and that it required redoing. However, instead of changing my IV before the scan, he explained that he didn’t want to put me through the unpleasant procedure right away. We ultimately used the imperfect IV line to administer the contrast solution for the scan and it held out until we were finished.

Gratitude for Life’s Simple Pleasures

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Gratitude is currently a hot topic within the cancer community, but in my view it’s not the cancer itself that suddenly bestows a person with gratitude. A major cancer diagnosis does often causes you to view the world differently—things that once seemed enormously important may lose significance and become almost trivial. Personally, I’ve discovered that physical attractiveness, material possessions and social status all matter less to me now. These things frequently seem to fade into irrelevance as I confront a life-threatening illness. Meanwhile, my relationships with other people, discovering ways that I can make a difference in the world and learning more about the essence of who I am are currently at the forefront of my agenda and have an extremely high priority to me at the moment.

Since my cancer diagnosis six years ago, I’ve been required to think about my mortality. I’ve also had to tend to many practical matters that I didn’t anticipate that I’d have to deal with until I was much older. While everyone around me carries on with their lives, I’ve had to stop and reflect on some of the deeper questions of life that others have the luxury of ignoring. Individuals diagnosed with cancer often find themselves contemplating existential questions. Why am I here? What is the purpose of my life? Who am I? These issues are brought to the forefront of your mind when facing a potentially deadly disease. Sometimes I feel frustrated by the fact that most things that my friends and family care about seem fairly trivial to me now. For example, they got cut off in traffic, they had a disagreement with a co-worker or their favorite esthetics studio is getting ready to raise its prices.

I’ve come to the conclusion that cancer itself doesn’t make us see what’s meaningful; we see it when our attention turns away from the small and trivial distractions that surround us. Taking life for granted is essentially our culturally-induced default mode — we are trained to overlook the essential. As a cancer survivor I’ve ultimately been freed from this monotonous, addictive cycle.

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These days I’m grateful for:

The oncologists who oversaw my case, especially my surgeon. I remain in awe of the fact that they literally saved my life, I’m grateful that the practice of medicine is what each of my doctors has chosen as their profession. “Whatever it is in oncologists that makes them want to be oncologists—that crazy mix of fierceness, optimism, arrogance and compassion—I get a contact high from it. It’s like love at first sight or touching something on fire. It’s like making a choice and refusing to look back,” observed Nina Riggs in her memoir The Bright Hour.

The nurses who were with me 24/7 in the hospital. I established a bond with several of the nurses when at one point complications forced me to spend seven consecutive weeks on the cancer unit. Weeks in cancer time feel like years, even decades, but the magnificent staff somehow helped me pull through.

People who donate blood. Many cancer patients require blood due to surgery or chemotherapy. I needed several transfusions during my treatment. Each time they hung a unit I remember thinking that I was being given “the gift of life” from a complete stranger.

The arrival of spring after a long hard winter. The sense of renewal or rebirth that is associated with spring has been heightened for me now that I’ve become a cancer survivor. I appreciate the small wonders like a pair of finches building a nest in our yard and the poppies that bloom in the garden each June.

Each morning when I wake up and become conscious that my disease is in remission and that I’m lying in my own bed. I give a sigh of relief when I discover that I’m not in the hospital and there is no need to drive to the cancer centre for chemotherapy or a checkup.

And gratitude, finally, for the readers of these posts. I am grateful that I get to share my ovarian cancer journey with you and, in turn, get to hear your stories.

Hospitals: Are They Still Places for the Sick to Get Well?

I suppose I’m incredibly lucky, having never been admitted to a hospital as an overnight patient until a few years ago. Inevitably like many cancer survivors I’ve undergone an unhappy transformation, I’ve been transformed from a hospital newbie into an experienced pro. Now that I’ve completed active treatment for ovarian and uterine cancer, I can boast approximately 70 days of my life spent looking at the world from a hospital bed. It’s no wonder that I was almost brought to tears recently while reading an article by André Picard, the Globe and Mail’s public health reporter. Picard nailed it perfectly with his recent opinion piece Taking patient-centred health care from rhetoric to reality. Here is an excerpt:

“So, what do patients dislike about being in the health system – aside from being sick, of course? A number of things: the helplessness; the feeling of anonymity; the discontinuity of care; the rote and the repetition; being talked about and talked to, rather than talked with; the waiting; and the loneliness.”

This epitomizes my experience as a cancer patient in so many ways and it also hints at what I believe are the limitations of most Canadian hospitals.

 

What Hospitals Are Not

During my cancer surgeries I often felt an urgent need to leave the hospital and go home, I never felt relaxed or like I could take my time to heal. These days, it may be easier to define hospitals by what they are not. They are not places for the sick to get well, not unless healing takes place in the brief interval of time that makes the stay a compensated expense. My hospital treatment was primarily covered by Alberta’s universal health insurance, but I needed my personal Blue Cross insurance plan as well. Through it all I was aware that hospital beds in Alberta cost around $1000 per day and that those beds are in limited supply.

I watched as some short-term stay patients were relegated to the hallway due to the unavailability of rooms. It was a reminder of how drastically the situation for patients and their families has changed in the past couple of decades. Once hospitals were where you stayed when you were too sick to survive at home; now you go home anyway, cobbling together your own nursing services from friends, relatives and drop-in professionals.

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The Foothills Hospital in Calgary is one of Canada’s largest medical facilities.

 

Turn Down the Noise

Like overcrowding the noise level in most hospitals has grown considerably worse over the past several decades. Dr. Brian Goldman recently discussed this topic in a blog post titled Hospitals bring down ‘da noise. Since 1960, the average daytime noise level in hospitals has gone up 200 per cent. Over the same period, the noise level at night has gone up 400 per cent. The World Health Organization says that for optimal health, the noise level in a patient’s room should be no higher than 35 decibels during the day, and 30 decibels at night. That’s the level of quiet conversation. In spite of these guidelines a 2012 study by researchers at The Ottawa Hospital found that the noise level on one unit averaged 76 decibels, that’s the noise level of a vacuum cleaner.

My personal experience gives an even more graphic example. At one point I had the misfortune of being hospitalized during some construction on the gynecologic oncology unit. Many staff members were apologetic and upset by the constant racket that we all had to endure. There were times when it sounded like a jackhammer and the noise levels had to be over 100 decibels. I believe that these circumstances were detrimental to my health and curtailed my ability to rest or heal properly. Actually, several studies have confirmed that excessive noise or disturbed sleep affects the immune system and delays recovery from major surgery.

 

Hello My Name Is

The medical professionals that I’ve encountered have all been competent, but what is often lacking is a sense that I’m a unique human being and not just a numbered chart or an illness to be discussed. British doctor Kate Granger recently passed away from cancer, but before she died she drew global attention to the impersonal care that patients in hospitals often receive. When Granger entered the hospital, her greatest anguish came from the fact that she was not treated as a person, but as an object on which tasks were performed. “I just couldn’t believe the impersonal nature of care, and how people seemed to be hiding behind their anonymity,” she recalled. Dr. Granger noted that, when people introduced themselves, it was comforting and made her feel safer and more like a person than an illness.

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Dr. Kate Granger left an important legacy.

While facing her own terminal cancer, Granger launched a spontaneous “Hello my name is” campaign urging health professionals to introduce themselves to patients. More than 400,000 staffers with the National Health Service in England have embraced the philosophy, and there are offshoots in Australia, France, Germany, Italy, the United States and Canada. Meanwhile the campaign is still gaining momentum on social media, the hashtag #hellomynameis has been used more than one billion times.

 

 

The Waiting Game

 

“Of all the hardships a person had to face none was more punishing than the simple act of waiting.”

Khaled Hosseini, A Thousand Splendid Suns

 

In this powerful quote Khaled Hosseini, the author of The Kite Runner and several other internationally acclaimed novels, speaks of the pain of waiting. Throughout my cancer journey waiting, along with uncertainty and fear, have been my constant unwelcome companions. Of course there have been the endless hours spent in doctor’s waiting rooms and waiting in diagnostic imaging departments for CT scans, MRIs and a multitude of tests. I can’t believe how accustomed I’ve become to these environments and to the monotonous routine that they now so strongly represent.

I close my eyes and I can visualize the waiting room chairs, the reception desk, sometimes a television for distraction, and always the tired and worried looks on the other patients’ faces. Some attempt to engage in small talk with other patients or with the caregivers who have accompanied them, others sit silently or try to read or distract themselves with electronic devices. My waiting time at the outpatient clinic at the Tom Baker Cancer Centre is typically half an hour to an hour. It’s common knowledge that Calgary is in dire need of a new cancer centre, as the Baker Centre is more than thirty years old and way over capacity with the volume of patients it now must serve.

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My memories of waiting for chemotherapy sessions in the late winter and early spring of 2012 are still extremely vivid in my mind. I can laugh now, but at my first appointment I was worried that some of the veteran chemotherapy patients might be able to tell that I was a newbie. They would ascertain that I looked too healthy and had all of my hair! When I arrived, I noticed that the people around me seemed to have many types and stages of cancer; what is more, a good number of them exhibited full heads of hair. After a short wait of approximately 15 minutes, a nurse led my mother and I into the Baker Centre’s large daycare treatment area. My heart beat faster as we reached my assigned space and I settled into a recliner by the window. The nurse explained what she was doing as she inserted my IV line and then attached some anti-nausea medication in preparation for the potent cancer-fighting drug, carboplatin.

As unpleasant as waiting for physical examinations and chemotherapy appointments can be, for many cancer patients it’s anticipating a future over which they have little control that seems so much more ominous and stressful. I live with the constant pressure of waiting for outcomes that I cannot completely control. When I was originally diagnosed with endometrial and ovarian cancer three years ago, I was referred to the Tom Baker Cancer Centre where my case was reviewed by the Gynecologic Oncology Tumour Board. This team of doctors and specialized pathologists reviews all new referrals to ensure correct diagnosis and to recommend the best treatment plan. Almost instantly I became the patient of one of Western Canada’s most renowned pelvic cancer surgeons, Dr. Prafull Ghatage.

hourglassMy first consultation with Dr. Ghatage now seems like a lifetime ago. In a few months I’m scheduled for another routine checkup at the Tom Baker Cancer Centre. It’s essential that I be monitored regularly for a possible recurrence or any signs of malignancy; ovarian cancer has a notoriously high recurrence rate. Many women with the disease face at least one recurrence within five years of their first diagnoses. Without resorting to an abundance of medical jargon, I’ve been diagnosed with stage IIIC2 adenocarcinoma of the uterus and stage IC adenocarcinoma of the ovary. As I await my next appointment on February 10, 2015, the encouraging news is that I’m currently in remission—at least I am to my knowledge—and my chances of a complete cure are better the longer I remain in this state. The Canadian Cancer Society defines remission as a decrease in or disappearance of signs and symptoms of cancer. In partial remission, some, but not all, signs and symptoms of cancer have disappeared. In complete remission, all signs and symptoms of cancer have disappeared, although cancer still may be in the body. According to Ovarian Cancer Canada, 80 per cent of women diagnosed with ovarian cancer will achieve remission.

However, it is unknown if the cancer will come back or how long before it comes back. These unanswered questions linger in every woman’s mind that has ever been diagnosed with cancer and all we can do is wait for the resolution. In the meantime, I’ve made my health my primary focus—a nutritious diet, an appropriate exercise routine and getting enough sleep have never been more important. Obviously I’m careful to take my daily medication; I’ve been prescribed the drug Megace (generic name megestrol), it has been known to reduce recurrence rates in uterine, ovarian and breast cancer patients. Finally, hope and my steadfast determination to live each moment of my life fully and completely remain my allies in this dreadful waiting game. “How much of human life is lost in waiting,” wrote the 19th century transcendentalist Ralph Waldo Emerson. As I continue to face the many realities of cancer in the 21st century I can strongly relate to this long ago observation.

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Mindfulness and Cancer

Managing psychological stress when you have cancer can be extremely difficult. How can you experience moments of stillness, relaxation and contentment when your mind is constantly preoccupied with your disease and what impact it might have on your future?

Even when the apprehensiveness over a cancer diagnosis is taken out of the equation, getting our mind to embrace a sense of calmness is often difficult. If you start paying attention to where your mind is from moment to moment throughout the day, chances are you will find that considerable amounts of your time and energy are expended in clinging to life’s memories or regretting unfortunate things that have already happened and that are over. And you will probably find that as much or more energy is expended in anticipating, planning, worrying and fantasizing about the future and what you want to happen or don’t want to happen.

Cancer only exacerbates this inclination; in particular there is the fear and uncertainty. Having cancer means facing the unknown trajectory of the disease, the side effects from chemotherapy or other treatments and the possibility of death. Even thought the doctors have reassured me that I’m in remission, I’m often consumed with anxiety. Like thousands of other women in my situation my mind seeks answers to the inevitable questions. How long will I remain in remission? If I have a recurrence, how can I possibly find the physical and emotional strength to contend with going through everything all over again?

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I’ve discovered that one of the best ways to quiet my mind and focus my attention is a technique called mindfulness. Jon Kabat-Zinn pioneered using this method with cancer patients and other groups battling chronic pain or illness at the University of Massachusetts Medical School. Mindfulness is basically just a way of paying attention, a way of awakening our minds and being present in the here and now. With principles found in Buddhism, mindfulness teaches us to live moments in each day rather than focusing on what might lie ahead.

Although mindfulness mediation is frequently taught and practiced within the context of Buddhism, it has been argued that its essence is universal. Mindfulness is universal and transcends nationality or culture because it’s essentially a technique for looking deeply into oneself in the spirit of self-inquiry and self-understanding. For this reason it can be learned and practiced by cancer patients without appealing to Asian culture or Buddhist authority to enrich it or authenticate it. Advocates contend that mindfulness stands on its own as a powerful vehicle for self-understanding and healing.

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Jon Kabat-Zinn

So how do you learn to live in each moment and remain focused on what is occurring in the present? How do you become skilled at practicing mindfulness? According to Jon Kabat-Zinn and other teachers mindfulness can take a lifetime to fully master. However, getting started isn’t difficult if a person is motivated to practice and doesn’t expect some magic resolution to life’s problems or to all of their cancer related issues. Its been said that the most insidious enemy of any type of daily practice is our North American culture’s relentless celebration of immediate gratification. Below I’ve listed some of the essential principles of living mindfully:

  • When a cancer patient approaches mindfulness formally in a group or classroom setting one of the first things that they will learn is how to use focused breathing techniques. This helps them to discover their body and how it responds to stress and other emotions. By concentrating on their breath, they can also gently pull their mind back to the present moment when it wanders.
  • Mindfulness is cultivated by simply observing our experiences and not judging them. The natural human tendency is to categorize or label almost everything we see. These judgments often come to dominate our minds, making it difficult to ever find inner peace.
  • Some cancer survivors choose to practice mindfulness meditation or gentle yoga. A study just published in the Journal of Clinical Oncology found that women with breast cancer who practiced yoga had lower levels of stress hormones. They also reported less fatigue and a better quality of life. It’s generally recommended that you ask your doctor if you can participate in yoga, then find a yoga instructor with experience leading a class that includes cancer patients.
  • In our overwhelmingly goal oriented and results driven culture mindfulness is one of the few practices that is essentially a non-doing. It has no other goal than for you to be yourself. For example, when you meditate you’re encouraged not to set specific goals such as I’m going to relax now, I’m going to become more enlightened or I’m going to control my pain. You have nothing to strive for, except perhaps a better recognition and appreciation of the present moment.
  • Acceptance and letting go are crucial components of mindfulness. A philosophy of mindfulness encourages us to come to terms with our life, even difficult experiences such as a cancer diagnosis. Acceptance means seeing things as they actually are in the present. Mindfulness doesn’t require that you have to like your situation—you don’t have to assume a passive attitude toward suffering or life’s unfairness. However, you must come to terms with things as they are and accept them, whether it’s a diagnosis of cancer or learning of someone’s death.

In spite of everything, cancer can be a wake-up call to the value of life, an incentive to live the life we want or believe we were meant to live in the time we have left. Mindfulness, with its emphasis on the present and living each moment fully, can help guide some cancer survivors through this profound journey.

Ralph-Waldo

Inside The Tom Baker Cancer Centre

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I’ve been a patient at Calgary’s Tom Baker Cancer Centre for over two years now, but it’s occurred to me that I haven’t presented a detailed description of southern Alberta’s primary cancer treatment and research facility in my blog. Perhaps I was waiting for the perfect time to focus on this topic in The Teal Diaries, and since my next scheduled appointment at the centre’s outpatient clinic is in approximately one week, writing down some of my thoughts and feeling about the building and its dedicated staff seems highly appropriate. Prior to my cancer diagnosis I had virtually no knowledge of the Tom Baker Centre. Like most people in Calgary I was aware of its location and had observed it numerous times at the sprawling Foothills Medical Centre, however I had never actually been inside the building. Every time I saw the five-storey cement structure, I hoped I would never be required to enter it. The very name “Baker Centre” would set off a wave of powerful thoughts and emotions—in my mind I identified it as a place where cancer patients went to receive treatment, and sometimes to die.

My first time inside was on a cold, dark November morning. Since it was my initial assessment the team of oncologists had scheduled me early, before anyone else. I still remember how terrified I was and how unexpectedly quiet and peaceful everything seemed to me at that hour. My mother and I were essentially the only ones present in the waiting room of the gynecology clinic. Soon I was having a detailed conversation with a nurse about my medical history, naturally there was an emphasis on any family history of cancer. Next, I was examined by one of the Baker Centre’s top pelvic cancer surgeons, Dr. Prafull Ghatage. Following my examination, my mother and I were assembled in one of the Baker Centre’s conference rooms with Dr. Ghatage and a team of other physicians.

The seriousness of my situation began to register as I looked across the table at four of five white-coated medical professionals. Dr. Ghatage explained that he wanted to perform surgery as soon as possible. This news was overwhelming, especially since I had just undergone a total abdominal hysterectomy three weeks earlier that had resulted in a cancer diagnosis. “I just had a hysterectomy and now I’m dying of cancer,” I tearfully blurted out. “You’re not dying, I’ll inform you if you are dying,” a firm voice immediately responded. These rational words jolted me back to reality, and before we left I signed a consent form for a laparotomy—a specialized procedure in which abdominal organs are removed, biopsied or repaired and a definitive diagnosis can be made.

Baker Centre building

All gynecologic cancer surgery and subsequent recovery actually takes place on Unit 42 B in the Foothills Hospital, but I was back at the adjacent Tom Baker Centre approximately two months later. This time it was to have the necessary follow-up chemotherapy. It was at this point that I began to realize how self-contained, busy and efficient the renowned Tom Baker Cancer Centre is. First my mom and I attended one of the centre’s chemotherapy orientation sessions. It included a tour of the daycare unit where specialized nurses administer powerful anticancer drugs to a steady stream of patients. About 90 patients a day receive treatment in 39 daycare treatment spaces, some of the spaces feature beds and some have reclining style chairs. Naturally, I was apprehensive when the day arrived for my first cycle of carboplatin with taxol; I was scheduled for six cycles with each treatment 21 days apart. Of course, I’d been warned about the inevitable side effects including fatigue, weakness and nausea. It was also predicted that my hair might become thinner, but that I probably wouldn’t lose my shoulder length bob completely. As a precaution, I had it cut into a much shorter pixie style.

I can laugh now, but I was rather worried that some of the veteran chemotherapy patients might be able to tell that I was a newbie. They would ascertain that I looked too healthy and had all of my hair! When I arrived for my first session, I noticed that the people around me seemed to have many types and stages of cancer—what is more, a good number of them exhibited full heads of hair. After a short wait, a nurse led my mother and I into the Baker Centre’s large daycare treatment area. My heart beat faster as we reached my assigned space and I settled into a recliner by the window. The nurse explained what she was doing as she inserted my IV line and then attached some anti-nausea medication in preparation for the potent cancer-fighting drugs.

Chemotherapy IV

Somehow the hustle and bustle of the busy daycare area had a calming effect on me, as did being in the presence of the staff and so many other patients. I left my first chemotherapy appointment extremely impressed by all that the Baker Centre does to make the procedure less stressful and more comfortable for each patient. I’ll never forget being offered coffee, tea and cookies by one of their devoted volunteers. Having been through treatment, I can appreciate how incredibly challenging it is for the team to meet the individual needs of thousands of men and women diagnosed with cancer. I was later astonished to learn that there were 20,100 chemotherapy appointments at Calgary’s Tom Baker Centre in the 2010-11 fiscal year. In my next blog post I’ll discuss some of the issues as the centre struggles to keep up with an ever-increasing demand for its services.