Tag Archives: cancer patients

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 in his recent article Taking patient-centred health care from rhetoric to reality.

“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.

Foothills_Hosp

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.

kate_Granger

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.

 

 

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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.

waiting room

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.

timepiece

 

 

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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?

Yoga

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.

Kabat-Zinn

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

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