Category / cancer doctor-patient relationship

by Jacqueline Chartier

Cancer Patients Face a Health System in Crisis

“Since the pandemic’s start, we’ve worried about the health system’s dramatic collapse but, like my dying patients, we’re witnessing a slower death; a system imperceptibly degrading until one day, like a cancer-riddled body, it just stops working entirely.”

Dr. Gabriel Fabreau

Doctors, nurses and patient advocates in both Canada and the U.S. are sounding the alarm that after two years of COVID-19, our hospitals have never been worse off. This incredibly disturbing quote describing the health care system is from a recent opinion piece in my local newspaper. The piece was written by Dr. Gabriel Fabreau, a general internist and an assistant professor at the O’Brien Institute for Public Health at the University of Calgary. Fabreau argues that the quality of care in Alberta is degrading, increasingly unsafe and often without dignity.

When I was first diagnosed with cancer in November 2011 I was like many Canadians, I was proud of our universal health care but I had never really been required to test it. I had never dealt with a chronic or life-threatening illness before. I’d never even been hospitalized for surgery or seen the inside of a cancer centre. My innocence of what’s involved in being treated for cancer was shattered almost literally overnight. It took three surgeries and five cycles of chemotherapy to force my disease into remission, along the way there were too many outpatient appointments, tests and scans for me to count. I’ve currently logged thousands of hours in hospitals and seen dozens of physicians and physicians in training, that’s enough to consider myself an insider when it comes to the basics of Canada’s health care system.

Photo by Anna Shvets

Even a decade ago, long before the pandemic, there were many warning signs that the system was under strain. 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. Even then, it may have been easier to define hospitals by what they are not. They’re 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 remember watching in surprise as some short-term stay patients were relegated to the hallway due to the unavailability of rooms. Unfortunately, what I witnessed was a typical example, an unpleasant reminder of how drastically the situation for patients and their families has changed in only a generation. Once hospitals were where you stayed when you were too sick to survive at home; now it’s become customary to go home anyway, cobbling together your own nursing services from friends, relatives and drop-in professionals.

Justifiably the deteriorating situation during the pandemic has me concerned. As a cancer survivor and someone who has relied heavily on health care, I’m becoming more worried each day. The reality is that if my cancer recurs or if I have to resume active treatment, I may not be able to obtain the essential care I need. Fabreau cites the growing deficit in cancer screening and follow up care as the most troubling to him.  “Most tragically, we’re seeing missed cancers, illnesses so advanced they are now incurable. We know delayed diagnosis and treatment increase cancer deaths. Canadian research predicts over 21,000 excess cancer deaths by 2030. Preventable deaths because patients couldn’t or didn’t have appropriate cancer screening.”

Photo by Cedric Fauntleroy

I’m enraged and disheartened because, as Dr. Fabreau explains, the disastrous situation that we now find ourselves in was mainly avoidable. Even before the pandemic, the supply of health care workers was becoming inadequate. Canada has among the lowest physician and an average nurse supply per capita among high-income countries. Both workforces are running on empty: over half of physicians and more than 75 per cent of nurses in Canada are burnt out. It’s now disturbingly obvious that action should have been taken years ago to hire, train and recruit more health care workers. 

Finally, to reduce hospital demand, we must stop pretending COVID-19 is over when it is not. The pandemic is far from ended, particularly for cancer patients and others who are immunocompromised. It’s true Canadian COVID transmission is cresting as we enter the spring and summer seasons, but that simply means we must use this short reprieve until fall to prepare. Governments and health authorities would be wise to use this time to focus on important initiatives such as improving indoor ventilation and uptake of vaccine booster doses.

by Jacqueline Chartier

Hospitals: What Every Patient Needs to Know 

What is it like to be hospitalized, I mean genuinely hospitalized for weeks on end until a tiny antiseptic room with curtains around the bed gradually becomes your home? For most of my life I had no real idea, but an awareness of severe illness requiring prolonged hospitalization can be one of the terrible consequences of becoming a cancer patient. In this blog post I’ll provide tips to cope with hospitalization and to endure the experience of being in a medical institution, specifically when undergoing major surgery.

First: Don’t let them diminish your identity.

The health care system and the medical establishment are especially challenging—we are made to feel anonymous and are often reduced to nothing more than numbers or charts, it hurts that we are being robbed of our individualism. I was personally made to feel an acute lack of identity when some nurses and hospital workers didn’t call me by my correct or preferred name. Their error would stem from the fact that I’ve always been called by my legal middle name, and not my first like most people. 

Loss of identity is the heart-breaking reality for many cancer patients as we find ourselves navigating the hospital or other medical institutions. We feel ourselves diminished and our individual worth slipping away. As patients much of our privacy and control is essentially gone, on a hospital unit we must wake when we are told, wear what we are told and eat what we are told. Often, we don’t have the luxury of a private room, we must share a room with whomever, they say we have to. 

In his classic New York Times bestseller Being Mortal: Medicine and What Matters in the End, Atul Gawande examines identity and how it’s often diminished for residents of hospitals and nursing homes. The author, a medical doctor, uses case studies and also discusses the reality of chronic illness and ageing within his own family. Gawande writes that the battle of being mortal is the battle to maintain the integrity of one’s own life—to avoid being so diminished or dispirited or subjugated that who you are becomes disconnected from who you were or what you want to be. 

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

Second: You deserve compassion and respect.

The best doctors or nurses make time to connect with their patients, and they genuinely care about what you are thinking and feeling. For example, if their patient is feeling cold, they arrange for a blanket, if their patient is thirsty, they get the individual some water. Without addressing these underlying human needs, impressive hospital designs and state-of-the-art equipment are useless. After a while it’s only our humanness that matters, the luxurious seating and lighting become insignificant compared with medical staff who consistently treat those under their care with compassion and dignity. 

I remember an incident that occurred at one of the lowest points during my rigorous cancer treatment. It was the middle of the night and I’d already spent several grueling hours in the emergency room when I was finally sent for a CT scan. The radiologist 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 replacing 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 unit after we were finished.

Third: Remember that hospitals can be dangerous. 

A recent study conducted by the Canadian Patient Safety Institute confirmed how prevalent accidents and medical errors are in hospitals. One in 10 Canadians have personally experienced a Patient Safety Incident (PSI), with many more saying a loved one has. Not surprisingly caregivers and those with a chronic illness were significantly more likely to have experienced a PSI, both personally and having a family member who experienced one. According to the study, misdiagnosis, falls, infections and mistakes during treatment were the most common types of PSIs. Meanwhile, those who had suffered a Patient Safety Incident most frequently cited distracted or overworked healthcare providers as contributing factors that led to the incident. 

Medicine as it is practiced now is so complex and time is so limited to healthcare providers that, even in the best hospitals, certain aspects of patient care can be overlooked or misconstrued. As a patient I quickly realized that I must be an advocate or have an advocate. Sometimes out of fear, pain or confusion I was unable to be my own advocate. This is why I believe it’s almost always essential to have a family member or loved one visiting you regularly and advocating on your behalf. However, the decision about which and how many visitors is still up to you. Remember it’s not your job to entertain visitors. You should encourage friends and family who understand your needs, and discourage those visitors who may not be completely in tune with you.

by Jacqueline Chartier

You Want Me to Do What?

“Are you someone who enjoys the unsolicited opinions of strangers and acquaintances? If so, I can’t recommend cancer highly enough. You won’t even have the first pathology report in your hands before the advice comes pouring in. Laugh and the world laughs with you; get cancer and the world can’t shut its trap,” wrote Caitlin Flanigan in her recent article for The Atlantic. 

If you’re a cancer patient then you’ll no doubt be able to empathize with the author’s lament on the subject of getting unsolicited advice. I know I’ve certainly felt high levels of frustration as people try to inform me how to live my life or deal with my disease. In some cases, the information we’re presented with is demonstrably inaccurate, scientifically unproven or even dangerous. After a decade of being offered personal as well as medical advice, caution and scepticism have become almost second nature to me. I inherently ask myself where is this information or recommendation coming from? Precisely who is telling me this, is the source an acknowledged expert in their field? Is what they are saying accurate, or could what they’re communicating contain a bias or a particular agenda?

Like most cancer patients I was particularly vulnerable in the months following my diagnosis. When my gynecologist gave me the results of my pathology report and said “it’s cancer,” I felt as if all that I knew and held certain about the world was suddenly obliterated or in doubt. Psychologists have observed that as human beings we tend to uphold something called the just world hypothesis or just world fallacy. We cling to the idea that the world is a fair and orderly place where what happens to people generally is what they deserve. In other words, bad things happen to bad people, and good things happen to good people. However, when an individual is diagnosed with cancer their sense of stability and belief in a just or fair world is often shaken— they can no longer rationalize much of what they thought was true. Some cancer patients become distressed, especially when they recognize that according to the just world hypothesis, they must somehow be responsible for their disease or deserve it. 

The truth I’ve come to accept is that I didn’t cause my cancer and I don’t have the ability to simply will it away. However, when my ovarian cancer was initially diagnosed, I was more desperate and naïve, more willing to imagine these things were still under my control. Looking back at the trauma I faced as a new patient, both my desperation and need for reassurance were justifiable. In 2012 I was hospitalized for over a month and a half at Calgary’s Foothills Medical Centre. The women’s cancer ward is predominately a place of bravery, triumph, heartbreak and tears. When I looked into some of the other patients’ eyes, I could see them begging for a future, and I understood that they would do almost anything for the gift of just a few more months in this world. 

Regrettably, some of the things that people either said or wrote to me during that time were highly inappropriate. Many of their suggestions worsened, or even exploited, my fear and vulnerability. In particular they reinforced the misconception that I could somehow control the course of the insidious disease that had invaded my body. On occasion this might have been due to malevolence, but I still believe the leading cause of people’s poor advice was ignorance.

I was recently reminded of some of the damaging words that were spoken to me by one member’s post in an online cancer support group. I nearly gasped in astonishment as, with a measure of composure, she conveyed the advice that she had just received from her oncologist. 

“He told me I needed to forget I ever had cancer, disassociate with all cancer friends or groups and eliminate thoughts of cancer and stress from my life to prevent recurrence,” she disclosed.

I was angry and astonished that such irrational advice had come from a cancer expert, an oncologist. What type of medical professional actually believes that cancer patients have the power to cause or prevent a recurrence simply by ruminating about their disease coming back or by not dwelling on it? This to the point of scolding patients for acknowledging their illness or the possibility it will someday recur. 

Of course, I don’t deny that a positive attitude and mental practices such as meditation can both play an important role in cancer recovery. Certainly, the mind is powerful and our attitude toward healing is important, but scientific evidence indicates that we cannot wish or ignore cancer away. 

The American Cancer Society and the National Center for Complementary and Integrative Health say there’s no evidence that meditation or support groups have a significant impact on survival rates. They can do all sorts of wonderful things, like reducing stress and allowing you to live in the moment instead of worrying about the next scan. However, there is no evidence that these methods will help you to achieve remission or slow the progression of the disease in your body.

by Jacqueline Chartier

Why Most Cancer Patients Should Be Vaccinated Against Covid-19

Sometimes I marvel that I’m alive because of medical science and what it’s capable of in the fight against cancer, during the search for a COVID-19 vaccine my sense of wonder was renewed. Never before in human history have vaccines for a pathogen entered final stage clinical trials and received approval for distribution to the public so rapidly. Just over a year ago, when the death toll from the coronavirus stood at one and neither it nor the disease it caused had a name, a team of Chinese scientists uploaded its genetic sequence to a public site. That kicked off the record-breaking rush to develop vaccines. It’s difficult to associate anything to do with this pandemic with good fortune, but the fact that the culprit was a coronavirus — one that was strikingly similar to others that had previously leapt from animals to people — meant scientists could quickly rejigger vaccine projects in the works for those. It was almost like swapping a blue Lego for a red one in their assemblies.

In December 2020, Health Canada authorized the Pfizer-BioNTech COVID-19 vaccine. Soon there was more encouraging news when they officially authorized a second vaccine for the virus, an injection manufactured by Moderna. The first Canadians to be offered the country’s limited inventory of the vaccines were those considered to be most vulnerable, the staff and residents of nursing homes and long-term care homes were prioritized. The frontline doctors and nurses who have been risking their own lives during this pandemic were also given appointments to receive their immunizations against COVID-19. I watched, as some of the health care workers receiving the vaccine shed tears of joy and relief. Many proudly posted photographs of themselves getting vaccinated on social media, reassuring the public and preparing us all for when it would eventually be our turn.

Naturally there are segments of the population that are hesitant or sceptical about the new COVID-19 vaccines and are unsure if they should be immunized. History reveals that vaccine scepticism is as old as vaccines themselves. Increased resistance to compulsory smallpox vaccination during the 1870s and 1880s exposed the fragility of trust in both the political and medical establishment. The most radical opponents to vaccines used demonstrations and publishing to rally their cause. The situation is similar today, many doctors and infectious disease experts acknowledge that their work has been made more challenging due to the anti-vaccine movement. 

Making sure that patients receive clear and accurate information is essential and everyone has a role to play. Ultimately preventing misinformation is a shared responsibility. The flow of medical knowledge works best when researchers, journalists and the public are strongly connected and considerate of one another. Nineteenth-century doctors tried to maintain boundaries between scientific journalism and the media, but were unable to prevent the public and journalistic demand for health information. That desire remains with us today. But even working together, the solution isn’t simple, experts maintain that changing behaviour in vaccine hesitant patients, isn’t always as easy as correcting misinformation. There’s still an emotional gap and trust gap that physicians regularly need to bridge in order to elicit this behavioural change.

Like all informed people, I accept the scientific conclusion that if you have active cancer, you’re at a higher risk for more serious outcomes if you acquire COVID-19. Cancer is considered an underlying medical condition. It’s a scientific fact that many cancer treatments, including surgery, chemotherapy and radiation therapy, can weaken your immune system, making it harder for you to fight the virus. Initial clinical trials on COVID-19 vaccines did not include people with cancer or those receiving treatments that can suppress the immune system. However, many professional organizations are endorsing the vaccines’ safety and efficacy for this group. Since individuals living with cancer are at increased risk of serious illness resulting from COVID-19, there is growing consensus among health authorities and oncologists that the benefits of vaccination outweigh the risks. Some exceptions include people who are severely immunocompromised or who have certain severe allergies .The National Cancer Institute emphasizes that people, including those with underlying medical conditions such as cancer, may get vaccinated if they have no history of severe allergic reaction (e.g., anaphylaxis) to any component of the vaccine.

As a final point, cancer patients going through active treatment are definitely at higher risk for COVID-19 complications, but what about cancer survivors or those whose cancer is in remission, such as myself? Little data is available to date on how the virus affects cancer survivors, but some early research suggests that we might also be at a higher risk for severe COVID-19 outcomes. One UK study found that the majority of comorbidities thought to be associated with poor COVID-19 outcomes were more common in the cancer survivors than the cancer-free controls. In general, cancer survivors had significantly higher rates of diabetes, asthma, and other respiratory disease, as well as more chronic heart, liver, and renal disease, and neurologic conditions, than controls. Nine years after my cancer diagnosis I appear fortunate to have few of these lasting health complications. Still I’ve made up my mind, after considering the research and the scientific facts, that I will be getting vaccinated as soon as I’m given the opportunity.

Further Reading

COVID-19 Vaccines: Separating fact from fiction on side effects, blood clots and more

Delaying second vaccine dose leaves cancer patients vulnerable to virus

For High-Risk Cancer Patients, Experts Consider Any Vaccine-Induced Covid-19 Protection Beneficial

How can I overcome my fear of needles to get a COVID-19 vaccination?

by Jacqueline Chartier

The Things That Are Not Okay

DOCTOR:  I am sorry this is the news I have to be telling you. 

ME:  It’s okay.

DOCTOR:  No, it’s not okay. Nothing about this conversation is okay. 

…in that sacred moment, this doctor gave me permission to be honest. That’s how I’ve been comfortable being so open about grief.

— Shannon Dingle

When you’re diagnosed with cancer there is sometimes a tendency to try to remain strong and stoic and to not complain or “burden” others with your illness. I think this predisposition might be more deep-seated in women because of the way we are socialized. Many of us will reply that things are okay or attempt to act like everything is alright in situations that are completely unacceptable. I’ve made a list of some unacceptable situations that are, in my opinion, not okay and they should not be painfully tolerated by people living with cancer or any other serious illness. I’ve made it my mission to call attention to these injustices—I try to call them out whenever possible. 

Spouses or Family Members Who Do Not Offer Support 

As an ovarian cancer survivor, I understand that women living with this ruthless disease need love and support and we deserve to be treated with empathy and compassion. We shouldn’t have to endure abusive or toxic relationships, especially when it involves a spouse, caregiver or other family member. Unfortunately, I’ve heard of women whose husbands or partners don’t support them emotionally through their cancer journey. Some spouses complain when a woman’s cancer treatment interferes with family holidays or social activities. A few will even have the audacity to grumble if their sick partner is unable to perform her regular domestic work or maintain certain household responsibilities. 

Medical Professionals Who Lack Compassion or Empathy

To me the best doctors take time to connect with their patients, and they genuinely care what we are thinking and feeling. During my hospitalizations, I was so often ignored or regarded as an insignificant number that the occasions when I was treated with dignity or compassion are especially memorable to me.  I will always retain one particular memory from during my months of 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 to diagnostic imaging for a CT scan. The technician performing the scan was highly 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 inserted 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.

A Culture of Guilt or Shame Surrounding Cancer

I’m still inspired by the words of the late American sportscaster Stuart Scott. “When you die, it does not mean that you lose to cancer,” he said. “You beat cancer by how you live, why you live, and in the manner in which you live,” There’s a controversial, yet commonly held, view that a cancer diagnosis is a war or a battle that must be won. The problem with this philosophy is that it places the burden almost entirely on us patients. If we die or if our cancer ultimately recurs it’s because we didn’t think positively enough or we just weren’t strong enough to will it away.

Many healthy people think that if they are diagnosed with cancer they will be treated quickly and then all they’ll need to survive is a positive attitude and a fighting spirit. They are wrong. In my opinion, a person’s cancer outcome will depend almost exclusively on medical science. If someone’s cancer progresses, it’s a failure of the medical treatments that are currently available to them, plain and simple. I know plenty of women who’ve succumbed to ovarian cancer and they were among the bravest and most resolute people on Earth. Ultimately, they are no less survivors than those of us who are lucky enough to be “cured” or to enjoy decades of remission.

A Lack of Progress in the Treatment of Ovarian Cancer

According to the Canadian Cancer Society an estimated 3,000 Canadian women will be diagnosed with ovarian cancer in 2019. An estimated 1,900 will die from the disease. Mortality rates for ovarian cancer have declined only slightly in the forty years since the “War on Cancer” was declared. In Canada, the five-year net survival for ovarian cancer is approximately 44 per cent. This means that, on average, only about 44 per cent of women diagnosed with ovarian cancer will survive for at least 5 years.

The survival rate remains dismal compared with most other types of cancer, this is essentially because the majority of women aren’t diagnosed until the disease is advanced and has spread beyond their reproductive organs. There is no reliable screening test for ovarian cancer and the early symptoms are often quite vague. For years, women and families affected by ovarian cancer have advocated for greater government funding of research into this disease. The indisputable fact remains that knowledge about ovarian cancer is still not as developed as it is for many other cancers.

by Jacqueline Chartier

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.

by Jacqueline Chartier

After a Cancer Diagnosis: Five Things You Need to Know

light nature sky sunset

Allow yourself time to grieve.

Allow yourself to cry, to feel numb, to be angry, or to feel however you’re feeling. These emotions hurt, but they are natural and normal. Grief is a person’s normal, healthy response to a loss. Understandably, I grieved after my father died, however I was surprised to find myself experiencing similar feelings when I was diagnosed with ovarian cancer. I discovered firsthand that the loss that triggers grief isn’t always physical. You can experience grief if you or a loved one are diagnosed with a major disease or face a serious illness. It’s common to grieve the future plans you had made, or the ways life will change. Remember there is no “right” way to grieve, everyone is different. Give yourself time to experience your loss in your own way. Also understand that during life’s most difficult times it’s important to make a commitment to take care of yourself emotionally, spiritually and physically.

Don’t let fear consume you.

Fear is one of my constant companions on this cancer journey, for over seven years now it has attempted to overcome me and prevent me from living the life that I want. Naturally, when I was first diagnosed with cancer and was undergoing months of treatment some extremely unsettling questions raced through my mind. Will the recommended treatment be successful or will I die? Will undergoing another major surgery followed by chemotherapy be too agonizing and unbearable? Now that my oncologist has informed me that I’m in remission, it’s the fear of my cancer recurring that I have to cope with on a daily basis. Practicing mindfulness helps me stay in the present moment and to accept that I can’t control certain outcomes. I’ve ultimately learned that faith can be an important factor in dealing with fear. I’m not religious, but like many I’ve chosen to build a life on faith—especially faith in the power of good to triumph over evil in this world.

terry-fox-determination

 

It’s ultimately your cancer journey.

One thing that’s become evident to me as a cancer survivor is that we all respond to cancer differently. Our response depends primarily on our own personality and past life experiences. How we deal with a life-threatening illness will differ according to our personal values and may also be connected to how we have responded to crises in the past. It must be acknowledged that cancer is extremely personal, so our response tends to be personal as well. With these facts in mind, I argue that no one has the right to tell me how to react emotionally to my cancer or to lecture me about how I should live my life after a diagnosis. For example, early in my cancer journey I was confronted by a couple of individuals who insinuated that I should not allow my illness to change my life. How could I have not changed? I’m not going back to the way I was before I had cancer. I see that as a terrible waste of all that I have been through.

You never know how strong you are.

When you are diagnosed with cancer you will have moments when you sense that your world is spinning violently out of control. The fundamental paradox for me is that I’m often in situations where I feel a sense of power, combined with courage and self-assurance. It’s as if I’m standing in life’s Category 5 hurricane and remaining resolute, steadfast and unbroken. I certainly don’t aspire to become a legend like Terry Fox or to be anything resembling a saint or a cancer hero. But still, I’ve discovered inner qualities and personal strengths I never appreciated or properly acknowledged in myself. Subjected to the ultimate test, I’ve sometimes shocked myself with my capacity to overcome adversity and to confront physical pain and suffering.

Don’t be afraid to ask for help.

There’s a familiar proverb that states that it takes a village to raise a child. I think that this can be modified to assert that it takes a village to properly support a cancer patient. When I was diagnosed with ovarian cancer seven years ago, I was suddenly faced with a whole new array of complex needs. It was sometimes necessary, or in my best interest, to accept the assistance of my inner circle of friends and family members. For example, my mom was my primary caregiver following each of my three major surgeries. She would also accompany me to and from my appointments at the Tom Baker Centre and remain with me when they administered chemotherapy. Today most cancer patients, including myself, have access to social workers, psychologists, dieticians and other skilled professionals. Treating the whole person and recognizing that each patient has unique issues and needs have become firmly entrenched and are part of the philosophy of cancer care.

by Jacqueline Chartier

Five Tips for Communicating with Your Oncologist

Know Your Rights

You have a right to be treated with dignity and respect by hospital staff and by all members of your oncology team. Every cancer patient should be provided with complete and accurate information regarding their condition, including their prognosis. The medical professionals heading your cancer care team have a responsibility to explain your diagnosis, treatment options and other information in clear understandable terms.

Ultimately you have a right to be an active participant in your treatment plan, it’s your disease and your body. It’s your right to either consent to treatment or refuse a procedure suggested by your oncologist. For example, you can refuse to sign a consent form if you feel everything hasn’t been explained clearly or you can cross out part of a consent form that you don’t want applied to your care. However, remember that if you do refuse a treatment your oncologist is required to explain to you the medical consequences of your decision.

Doctor's Touch

 

Recognize Your Responsibilities

It’s 2017 and it’s your responsibility to be active in your care and to advocate for yourself. Just a generation or two ago doctors were like gods in white coats, you didn’t dare question their authority and the fact that they had graduated from medical school meant that they were in control of the decision making. Patients are no longer passive or expected to behave like children or second-class citizens in a doctor-patient relationship. Today, the treatment of cancer and other life-threatening diseases is a collaborative process. You should do your best to be well informed and to ascertain the benefits and risks of each procedure or treatment offered to you.

Many cancer patients, including myself, have discovered that the level of responsibility put on us is quite high. We are responsible for adhering to a complex treatment regimen proposed by our oncology team. Treatment as an outpatient generally includes chemotherapy, radiation and regular follow-up appointments. Keeping track of all these scheduled procedures, medications and other detailed instructions can sometimes make an individual feel overwhelmed. If this happens, don’t be afraid to ask for help or to inform your family and your professional cancer care team.

 

Come Prepared

If you’ve recently been diagnosed with cancer, chances are your mind is spinning and you have literally dozens of questions that you feel you need to ask your oncologist. Where do you begin and how do you best prepare for an appointment? I recommend composing a list of questions and placing the ones that you think are the most important fist. As a patient, you’re entitled to ask your health care providers anything, in that sense, there are no right or wrong questions. However, being prepared will help you get more out of your interaction with your health care providers.

Here are a few of the most essential questions that you might need to go over with members of your oncology team.

Can we please review the next step in the plan?
Why are we doing these tests?
Why am I receiving this treatment?
What are the side effects of this medication?
How effective is the treatment?
Please explain how the treatment will help.
Why do you think that this is the best treatment for me?

 

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Acknowledge That Doctors Are Human

When talking with your oncologist, you should always remember that you’re dealing with a human being, doctors are not gods or saints. Yes, they have specialized medical knowledge and unique and difficult to acquire skills, but that doesn’t mean they can’t make mistakes or feel emotions. Studies have revealed that anxiety and depression are equally prevalent in the medical profession as in the general population and more worryingly, addiction and suicide rates are actually higher than the general population.

Physicians are still cultured to show no weakness, that vulnerability is a sign of incompetence. Although medical professionals encourage patients to seek help, admitting that they themselves sometimes encounter physical or emotional issues can be seen as a character flaw. Remember that your oncologist is a human being in a highly demanding and extremely stressful profession.

 

Value Honesty

Even before my cancer diagnosis five and a half years ago I understood that honesty is one of the central features of the doctor-patient relationship and that without honesty there can be no trust.

Still, doctors have this nasty habit of asking a lot of questions. Many of their inquiries make us uncomfortable or self-conscious, so we sometimes bluff. Here are a few of the most common issues that patients are dishonest about.

Many patients lie about the medications they are taking and whether they are taking them as prescribed.

Some patients are deceitful about whether they smoke.

Patients are often hesitant to discuss how much alcohol they consume.

People will often tell their doctor that they exercise regularly and eat a healthy diet, but not adhere to these practices.

Occasionally a cancer patient will lie when they experience pain or other possible symptoms of recurrence in the hope that their oncologist won’t find anything wrong.

by Jacqueline Chartier

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.

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.

 

 

by Jacqueline Chartier

Relying on the Web: What Cancer Patients Should Know

When I was first diagnosed with cancer, I entered a psychological realm where wanting to know everything about the disease alternated with fear and aversion. Numb and in shock, I would often read over my three-page pathology report, using various websites to meticulously research the strange and frightening terminology it contained.

I’m not alone in feeling this way or in turning to the Internet for help. Nearly half of all Canadian adults are asking questions about cancer, and most turn first to the web for information. The problem is that this self-research is leaving many cancer patients confused, overwhelmed and stressed out. Although we tend to use the Internet as our first resource, most of us don’t have strong faith in the information that it provides.

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According to a new survey commissioned by the Canadian Cancer Society, when it comes to getting definitive cancer information, doctors and healthcare professionals are trusted by 94 per cent of Canadians. In spite of that only eight per cent of Canadians contacted their healthcare team first with questions. Similarly, cancer organizations and charities are trusted by 87 per cent of those seeking information, but less than five per cent of Canadians searching for cancer information reached out to them. People are more skeptical of online sources with only 69 per cent trusting the information. Despite their uncertainty, 85 per cent of people with cancer questions first turned to a search engine.

Why do Canadians so frequently consult the web for information about cancer if they place more confidence in their oncologist and organizations such as the Canadian Cancer Society? According to the survey, convenience is an issue. While the web is easily accessible, more than half of respondents said it is challenging to get time to speak with their healthcare team. But ease of use comes with unexpected side effects. Two-thirds of Internet users felt overwhelmed with information, and 62 per cent felt stressed out and worried, jumping to 70 per cent among Canadians 18 to 34.

There are several alternatives to randomly searching the web that I would strongly recommend.

Use Only Reliable Internet Sites

My cancer facility, the Tom Baker Cancer Centre in Calgary, provides patients with a list of recommend websites. Here are a few of the most essential ones.

American Cancer Society
Canadian Cancer Society
National Cancer Institute
CancerNet
Oncolink

Use The Canadian Cancer Society’s Cancer Information Service

IMG_0117Since 1996, the Canadian Cancer Society has answered 1,250,000 questions through its Cancer Information Service. The Society’s toll-free bilingual Cancer Information Service can be reached at 1-888-939-3333. Assistance is available to cancer patients, caregivers, the general public and healthcare professionals. An information specialist will take all the time you need to answer your questions and provide you with information on the following topics:

  • cancer treatment and side effects
  • clinical trials
  • coping with cancer
  • emotional support services
  • prevention
  • help in the community
  • complementary therapies

The Canadian Cancer Society’s phone line is available during business hours Monday to Friday. You should also note that when you contact the Cancer Information Service for help, your privacy is protected and you will not be asked for donations or put on a mailing list.

Access Support Organizations for Your Specific Cancer Type

Instead of randomly searching the Internet try connecting with an organization that specializes in providing support to individuals with your type of cancer. For example, staff in Ovarian Cancer Canada’s regional offices are available to answer your questions and to provide support via telephone or email. Ovarian Cancer Canada hosts webinars, workshops and events that are relevant to women living with the disease. You can also listen to various educational recordings on their YouTube channel.

Finally, Ovarian Cancer Canada offers a comprehensive guide to support and inform women who have been newly diagnosed with ovarian cancer. The publication is called By Your Side and printed copies of this resource are provided free of charge across Canada. You can Order By Your Side by filling out an online form or by calling 1-877-413-7970 (toll free).