Tag Archives: cancer surgery

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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Unit 42 Haiku

National Poetry Month, which takes place each April, is a celebration of poetry introduced in 1996. Those of you who follow The Teal Diaries are aware that I don’t normally write poetry, however I’ve been inspired during my cancer treatments to pen a small collection. There are few experiences in life as distressing or traumatic as being hospitalized for cancer surgery. In December 2011, I underwent surgery and was cared for on Unit 42 at Calgary’s Foothills Hospital. Many of the events that transpired are represented in the poetry that you will read here. I’ve chosen to write haiku because of the format’s simplicity and it’s ability to convey powerful emotions or striking images.

blue slippers and gown
an eternity passes
in the pre-op room

when he cuts me open
no tumour for my collection
crave smooth healthy organs

anesthesia mask
a few deep breaths are drawn
on my way to oblivion

recovery room
the bright lights overhead
I’m dropped into darkness

conscious, I arrive
the darkness welcomes me
on a winter night

the room is spinning
I long for perfect stillness
let this voyage end

van-gogh-starry-night

I have nurse Crystal
the post surgery hours pass
finally, the dawn

they manage my pain
senses are dulled with morphine
the standard dosage

compression bandage
covers my fresh incision
my surgeon’s trademark

first blood transfusion
my outstretched arm is waiting
for type O to come

my blanket is thin
comfort of warm flannel sheets
during the still night

this building is old
mid-twentieth century
these rooms are vintage

generations past
have walked slowly down these halls
now I follow them

19th Century Surgery

I have a roommate
a Dutch Lutheran woman
her prognosis is grave

new complications
nausea, fluid leaks out
doctors seem unsure

hard recovery
my progress has been so slow
a mountain each day

my carcinoma
hides under a microscope
in some nearby lab

the truth will ooze out
why conceal my pathology
daze me with a pill

he stops by my room
cancer spread to one lymph node
the truth is laid bare

too much of this place
even the walls scream go home
find the strength to heal

past empty wheelchairs
through the lobby Christmas Eve
out hospital doors

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Time Heals: Today’s Cancer Patients Owe a Debt of Gratitude to Generations Past

Emperor-of-All-MaladiesOnly recently have I started to think a great deal about the history of cancer or the oncologists and patients that have come before me. I developed a fascination with these topics while watching the PBS miniseries Cancer: The Emperor of All Maladies. This three part series skillfully explores the medical and scientific aspects of cancer; even more impressive is the wonderful job that the producers have done of delving into its history and politics.

The creators of the groundbreaking television documentary based their project on a strong work of non-fiction by renowned oncologist and award winning journalist Siddhartha Mukherjee. Both the PBS documentary and Mukherjee’s Pulitzer Prize winning volume have one overriding theme. They bring to light that our current generation’s experience with cancer represents only a momentary chapter in an epic battle spanning thousands of years.

The Emergence of Modern Cancer Surgery

When I was diagnosed with fairly advanced cancer in my uterus and right ovary, the first, and most essential, part of my medical treatment involved surgery. I literally owe my life to the skill of my pelvic cancer surgeons and to the sophisticated surgical techniques available in the 21st century. Ovarian cancer is still the most serious of all women’s cancers, and the survival rates can be quite grim—the positive news is that the outlook has improved in recent decades, largely due to better surgical procedures.

For centuries surgery to remove cancerous tumours wasn’t a viable option, as the medical technology wasn’t yet available. In extremely rare cases a physician would attempt to cut out a cancerous growth. However, the circumstances would have been barbaric by today’s standards. There was no method to properly anesthetize patients and they were frequently operated on while conscious, in addition there was no use of modern antiseptics to keep the surgical wounds from becoming infected.

19th Century Surgery

The late 19th century witnessed the origins of present-day cancer surgery. Anesthetics such as either were discovered and this made lengthier, more complex operations possible. Procedures such as the radical mastectomy for breast cancer were successfully devised and implemented during this era. As a matter of fact, the medical community firmly believed that it was possible to cure cancer through surgery alone. The nature of how cancer spreads to distant sites in the body wasn’t yet well understood. Most experts mistakenly believed that its recurrence months or years after surgery was strictly due to not taking out enough tissue, reappearance of the disease was caused by the growth of fragments of the principle tumour that were left behind.

The Development of Chemotherapy

Sidney Farber

Dr. Sidney Farber

The nature of metastasis is much better understood today and a patient with gynecological cancer, such as myself, is routinely offered chemotherapy following surgery. Of course only in the past 40 or 50 years have powerful chemotherapy drugs been introduced to the arsenal in the war against cancer. Oncologist Sidney Farber (1903-1973) is considered by most historians to be the father of chemotherapy. Farber and his team in Boston began trials on children with leukemia in the late 1940s. At this time leukemia was still a death sentence for any child diagnosed with the disease.

Farber’s new therapy was almost miraculous in the sense that it led to remission in many of his young patients. Some of the children, including a patient named Robert Sandler, had their lives extended by months after the potent chemicals were administered to them. The leukemia would virtually disappear and they would momentarily resume an active childhood. Throughout the 1950s and 60s, Farber continued to make advances in cancer research, notably the 1955 discovery that the antibiotic actinomycin D and radiation therapy could produce remission in Wilms’ tumor, a pediatric cancer of the kidneys.

What the Future Holds

As I battle ovarian cancer I try to be realistic about how far treatment has come, I know there is still an extremely long way to go in the war against this insidious disease. Over the last two decades, the five-year survival rate for patients with ovarian cancer has improved significantly. Yet, according to the experts, no more than 30 per cent of long-term ovarian cancers are currently being cured. Oncologists admit that they are facing enormous challenges. While surgical advances and new treatment approvals, including Lynparza (olaparib) and Avastin (bevacizumab), have improved the outlook for ovarian cancer patients, late diagnosis and tumour resistance remain as the two most significant barriers in overcoming the disease.

Cancer Cells

Meanwhile, the medical community is continuously developing new treatments for cancer, one of the most promising is called immunotherapy. For decades oncologists have known that the immune system plays an important role in certain types of cancer. They noted that there were rare spontaneous remissions of cancer without treatment and they suspected that this was because the immune system was attacking the tumour. Immunotherapy is designed to boost the body’s natural defenses to fight the cancer. Medical specialists use materials either made by the body or in a laboratory to improve, target, or restore immune system function.

At the present time it isn’t entirely clear how immunotherapy works against cancer, it may function by stopping or slowing the growth of cancer cells, stopping cancer from spreading to other parts of the body, or helping the immune system increase its effectiveness at eliminating cancer cells. There are currently several types of immunotherapy in use, including monoclonal antibodies, non-specific immunotherapies, and cancer vaccines.

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A Matter of Trust

trust-brokenEven before my cancer diagnosis three years ago I understood that trust is one of the central features of the patient-physician relationship. Ideally when I come under a physician’s care I should trust in my doctor’s competency and in their commitment to me as a patient. When I undergo medical treatment I must also trust my physician or surgeon to put my welfare above his or her own self-interest. Ethically my physician should always place my needs above obligations to other groups and advocate for my welfare.

This bond of trust has played a dominant role throughout my cancer journey, especially when I’ve undergone major surgery or consented to treatments such as chemotherapy. I met my oncologist in November 2011 and I continue to trust in his medical expertise and sound judgment when it comes to treating my disease. I know he and other members of the team at the Tom Baker Cancer Centre have placed my best interests before anything else. Still I regret to say that there was a critical point during my cancer treatment when I began to have irrational doubts about my surgeon and his medical colleagues.

Doctor's Touch

Looking back, several factors were instrumental in causing me to temporality lose confidence in my surgeon. In the spring of 2012 complications arose due to my cancer treatments. Two previous surgeries had resulted in scarring and adhesion of my bowel and at the time the blockage was probably being exacerbated by the chemotherapy I was undergoing. I was terrified of what might happen and despondent about my situation when I ended up a patient on the genealogic oncology unit for the third time. I was admitted through the emergency department and I could sense that my situation was extremely serious or potentially life-threatening. Worst of all I was in a tremendously weakened physical condition and my psychological state could best be described as anxious and confused.

My trust in my surgeon began to deteriorate due to communication issues. While he is a highly skilled oncological surgeon, like many doctors he is not strong when it comes to exercising interpersonal communication skills. He rarely spoke to me or came by my room—we never really had a conversation to reassure me or to discuss my condition in detail. Instead it was typically surgical residents completing their 7 a.m. rounds that I saw for a few minutes each morning. In about the second or third week of being confined to a hospital bed with orders not to consume food my fear and imagination began to run out of control. Was my surgeon really qualified and capable? Had he played any role in creating the serious complications I was now facing?

Meanwhile, some family members and other non-medically trained individuals only increased these suspicions and fears. They suggested that perhaps I should not trust my surgeon and that I should try to get another specialist to operate on my bowel blockage. As the scheduled date for my surgery approached I became virtually obsessed with how vulnerable I was and how I would be literally placing my life in my surgeon’s hands.

Surgical-Instruments

I had previously trusted my surgeon and thought of him as a conscientious and vigilant medical practitioner, now I had almost convinced myself that he might be the opposite. Was he a cowboy? As explained in Dr. Brian Goldman’s book The Secret Language of Doctors cowboy is a slang term to describe a surgeon who is excessively reckless or careless with patients. In the bestseller a cowboy is described as someone who rides by the seat of his pants. It’s someone who kind of does things quickly. They’re trying hurriedly to do everything in a somewhat haphazard fashion, hoping like hell it all comes together at the end. Cowboy is also used to refer to a surgeon who perhaps doesn’t have the best judgment—someone who operates first and asks questions later.

Of course there were moments when I had nagging doubts that I could endure another surgery, I had just been through two major operations. This had made me all too familiar with the overwhelming physical and emotional impact that abdominal cancer surgery has on a woman. In essence I agree with Dr. Goldman’s opinion regarding the consequences of surgery.

The thing I find many surgeons fail to appreciate is that an operation is a form of controlled violence on the patient. If surgeons thought about what they do to patients on a daily basis, I suspect many wouldn’t do it. Even the most successful surgery causes severe (albeit manageable) pain. For patients relieved of their condition, post-operative pain is bearable—but not so much when the surgery results in complications or worse.

Brian Goldman, The Secret Language of Doctors

Finally on June 18, 2012, I signed the appropriate documents and critical surgery was skillfully performed. When I awoke in the recovery room I sensed that my crisis was at last resolved. Although only half-conscious, I was filled with elation as they informed me that the procedure to correct my obstruction had been successful. The primary cause was established to be scar tissue from my previous operations and now my digestive system was expected to function normally again. Most of all, I was comforted and reassured by the fact that my ovarian cancer had not visibly metastasized to other organs in my body. After a long, tumultuous journey my fundamental trust in my surgeon had ultimately been restored.

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My Relationship With Food: Part I

One of the classic symptoms of ovarian cancer, especially as it becomes more advanced, is a feeling of fullness when you try to eat and a general lack of appetite. This was my experience as I tried to eat meals and enjoy food prior to my diagnosis, something was definitely wrong, but I didn’t know what it was. Throughout my life I’ve always had what I consider to be a positive relationship with food. As a small boned and extremely petite woman I enjoy eating from a full range of food groups—I’ve never been obsessed about dieting trends, such as low carb diets or low fat diets. Even before my cancer diagnosis I was a health conscious individual, aware of the strong connection between our physical and mental health and proper nutrition. I would deliberately avoid such temptations as eating large quantities of prepackaged or processed foods or dining regularly at fast food restaurants. I generally prefer the wonderful taste of home cooking and meals prepared from scratch anyway.

IMG_0190

As my symptoms progressed I was sometimes just going through the motions of eating, and I wished that the doctors would find out what was wrong so my meals would be pleasurable again. Leading up to my diagnosis, even many of my favourite foods such as homemade spaghetti sauce, fresh stir-fries and strawberry smoothies were quickly losing their appeal! I ultimately had a hysterectomy performed in the fall of 2011, one week following my surgery the pathology report came back positive for uterine and ovarian cancer. I was in shock and emotionally devastated, but at least I knew what the enemy was that was trying so hard to destroy my life and my relationship with food! What is more, my cancer journey had begun. I was immediately referred to Calgary’s Tom Baker Cancer Centre where I underwent a highly specialized surgery to remove my remaining ovary and to more accurately stage my disease.

My second surgery was performed on December 13, 2011, and much to my consternation I nearly spent Christmas Day in a hospital bed. While it came as a relief when I was discharged on Christmas Eve, a scrumptious turkey dinner was definitely not going to be part of the celebration for me. I could still hardly stomach solid food. There had been complications following my surgery in the form of a partial bowel blockage. My situation was unfortunate, but perhaps not surprising. Not only had I undergone two surgeries within about six weeks of each other, during the second procedure my surgeon chose to remove a section of my small bowel in order that it may be tested for cancer. I experienced severe nausea and vomiting in the days following this operation and they used just about every medication in their arsenal to get it under control. At one point we even placed a patch commonly used to treat seasickness behind my ear!

Hospital Food

As soon as I was recovering at home, my mother made a special effort to prepare meals that are my favourites, we both hoped that my appetite would return to normal and that I would gain weight. It was wonderful to taste home cooking again after nearly two weeks on hospital food, but I could sense that something wasn’t exactly right in terms of my digestion. Meanwhile I was assaulted with more bad news, the pathology report from my second surgery revealed that cancer cells had spread to some of my abdominal lymph nodes. It was recommended that I undergo six rounds of chemotherapy, which I started almost immediately. I was given the customary warning about nausea and about how people on chemotherapy often experience a lack of appetite. Typical symptoms also include, constipation and a metallic taste in your mouth that impairs the normal flavour of certain foods.

Once my treatments began, I became completely focused on making it through my chemotherapy and I assumed that the bowel blockage issue that I had experienced was resolved. As my symptoms such as nausea and constipation grew worse, I just attributed it to the carboplatin that I was receiving every three weeks intravenously or to the other medications that I was taking. Soon I was forcing myself to eat what little I could—and even more disturbing was the fact that I hadn’t gained any weight since my recent surgery. The only positive experience I can remember from this period is my discovery of the Living With Cancer Cookbook by Kris Ghosh and Linda Carson, a fantastic volume of recipes specifically aimed at women going trough cancer treatment.

There’s an abundance of comfort food here and a sense that the authors truly have compassion for those of us who struggle to eat, for example breakfast recipes include cheesy ham and asparagus bake and home-style oatmeal with raisons. I also love the way this cookbook is organized to deal with the specific symptoms of cancer treatment. The four most common side effects are nausea, mouth sores, diarrhea and constipation. Eating the right foods can help alleviate these issues and make them more bearable. But as I would soon discover, I’d developed extremely serious complications with my digestive system that would require more surgical intervention. In my next post I’ll discuss my ordeal when I was hospitalized and unable to eat or drink for over a month!

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Survivorship 101

My health had always been tremendously good, and then one afternoon in November 2011 I received an unexpected diagnosis of both uterine and ovarian cancer. In hindsight words such as devastating, terrifying, and life-altering seem inadequate to describe the magnitude of that experience—my daily existence was shattered. Sometimes it’s still as if I’m trapped in an appalling dream, a nightmarish reality that to date has encompassed three major abdominal surgeries and five cycles of chemotherapy. As with countless other cancer survivors I have asked “Why me?” while I’ve struggled to find anything positive about living with such an affliction. I have accepted the likelihood that my life may never be exactly the same; I must adjust to a “new normal” as day by day I contend with the consequences of an insidious, spiteful, and often fatal disease.

In this blog I will be writing about various aspects of my cancer journey. I have chosen to call it The Teal Diaries, since teal is the colour used to represent awareness of gynecological cancers. While pink ribbons are strongly associated with breast cancer, significantly fewer people realize that ovarian cancer survivors, and those who wish to support them, wear teal ribbons. If there is less public awareness regarding ovarian and endometrial  cancer, I suspect that it’s because they are both less prevalent and have a significantly higher mortality rate than breast cancer.

I’ve waged my relentless battle for over a year now, I currently seem to have the upper hand and my doctors indicate that they are cautiously optimistic regarding my prognosis. Since the beginning of my cancer experience there have been moments of epiphany and numerous opportunities for personal reflection. Being that this is my initial blog post, I want to share a few of the survivorship lessons that I’ve experienced over the past fourteen months. According to professionals in the cancer field, survivorship is living with and beyond cancer. Survivorship covers the physical, psychosocial, and economic issues of cancer, from diagnosis until the end of life. This is what I’ve learned so far.

You never know how strong you are until being strong is the only option you have left.

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. As one of the approximately 17,000 Canadian women living with ovarian cancer, I obviously know firsthand how it impacts a life. For survivors there is tremendous emotional pressure, along with social and financial turmoil.

There are moments when you have the impression that your world is spinning violently out of control. The fundamental paradox is that I’m often able to 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. “Okay cancer, you ruthless bastard, attack me with all the intensity you’ve got! I will still transcend you and the pure malevolence that you represent,” I tell myself. Some pundits would consider this type of resolve impressive, especially as demonstrated by a socially introverted, physically petite woman, such as myself—I stand only four feet 10 inches at the absolute maximum.

Appreciate the flowers in your own backyard.

DSC_0023

I reached an unparalleled low physically and emotionally last year, during the spring of 2012. By May there were potentially life-threatening complications due to my rigorous cancer treatments. Vomiting and in pain, I was transported to the emergency room through early rush hour traffic. It was a bright May morning when I entered the doors of Calgary’s largest medical centre and was admitted suffering from a bowel blockage. I acknowledge that at first I literally wanted to die rather than face what was happening. At least nothing had prepared me for the invasive medical procedures that I would endure in the coming weeks or for the length of my hospitalization.

Forty-eight agonizing days elapsed, during which time I received virtually all of my nutrition through a peripherally inserted central catheter (PICC or PIC line). On June 18, 2012, intestinal surgery was skillfully performed. When I awoke in the recovery room I sensed that my crisis was at last resolved. Although only half-conscious, I was filled with elation as they informed me that the procedure to correct my obstruction had been successful. The primary cause was established to be scar tissue from my previous operations and now my digestive system was expected to function normally again. Most of all, I was comforted and reassured by the fact that my cancer had not visibly metastasized to other regions of my body.

My discharge from the hospital ultimately took place on a balmy summer afternoon; the clothes I had worn nearly two months earlier felt hot and close fitting. I was so weak from my ordeal that I struggled to walk just 10 or 20 metres, but I was in awe as I observed how the seasons had changed and nearly everything had been transformed. I can still remember the blissful journey home and my sense of anticipation during that short, but very emancipating, commute. Even the air filling my lungs was like a breath of freedom.

Upon arriving at the small bungalow where I live, something magical occurred. My eyes surveyed the backyard and the unexpected sight of poppies in full bloom completely overwhelmed me. It was as if I were seeing them for the first time. I remain inspired by their exquisiteness, vaguely encouraged by the realization that their brilliant orange petals and intricately designed purple centres will never appear ordinary to me again. I’m certain that from now on, I’ll be eagerly awaiting the phenomenal appearance of the poppies each June!

Learn how to embrace the new pretty.

There are literally thousands of magazine articles, journal studies and online resources devoted to the topic of sexuality and women’s cancers. How a woman copes and deals with the changes to her body are unique for each survivor, of course such factors as age and relationship status come into play. Studies have confirmed that the most prevalent issue for those diagnosed with uterine or ovarian cancer is a sense of profound loss. Psychologically I continue to mourn the demise of my reproductive organs and the loss of what I always perceived as an impeccably strong and healthy body.

Throughout my cancer ordeal I have felt moments of contempt, occasionally mixed with rage. I find it easy to despise a culture that is inclined to objectify women—placing intense pressure on us to possess a perfect body. I’ve become acutely sensitive to the media, the advertising industry and to what I believe are ridiculous and superficial standards of female beauty.

Belly Pic

There have been circumstances when I’ve waged war using humour or an “in your face” attitude. During my convalescence from one of my cancer surgeries I recall being engaged in a discussion with my mother while sorting through a stack of mail. I paused as I unearthed a catalogue for a major Canadian department store, cringing at the sight of the cover. Predictably it was flaunting an image of a model with an unblemished face and body. The New Pretty, the caption breathlessly announced. All of a sudden I grinned mischievously, as in one defiant move I turned and flashed my freshly scarred and stapled abdomen. “I’ll show them the new pretty,” I boldly declared.

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