Winter’s Wrath: What Cancer Patients Need to Cope

I’ve lived my entire life in the harsh Canadian climate and over the years the winters have become ingrained in me. It seems like I’ve endured too many winters to count and the last six of them have been as a cancer patient and cancer survivor. For the over 1 million inhabitants of Calgary, Alberta, the local winters are long, bitter and frigid. The season seems to last forever and the extended deep freeze is only interrupted by the occasional chinook. Not surprisingly, our comparatively short summers are relished and savoured. The months of July and August are like manna from heaven and offer a precious respite from the unrelenting severity of our climate.

Studies have revealed that winter is especially daunting for cancer patients—it’s a time of year that represents an assortment of physical, emotional and psychological challenges to anyone unfortunate enough to be battling cancer. For cancer patients, warmer climates and summer months can be much easier to tolerate. Given this fact, here are some of my recommendations for those of us condemned to endure another prolonged winter.

Get a Flu Shot

On a physical health level, influenza and the common cold abound during the winter months. Cancer and standard cancer treatments, such as chemotherapy and radiation therapy, frequently weaken the immune system, which helps fight off these infections. People with cancer or a history of the disease are more likely to have serious complications if they get the flu. Some other high risk groups include pregnant women, young children, people over 65, and those diagnosed with lung disease, heart disease or diabetes, They are more likely to end up in the hospital, some might even die from flu-related problems. Getting a flu shot is strongly recommended for most people with cancer as well as cancer survivors. Their family members are normally encouraged to get flu shots, too.

 

Winter

 

Stay Warm

I strongly suggest that you have a wardrobe of warm winter clothes on hand, including sweaters, parkas, boots and gloves. Deprived of the warmth of summer, individuals with cancer may be at above average risk for hypothermia and other dangerous medical conditions triggered by cold temperatures. When our body can’t produce enough heat to stay warm, hypothermia occurs. Certain medications and medical disorders associated with cancer or cancer treatment can interfere with our body’s natural ability to adjust its temperature. Dehydration, a common side effect of cancer treatment, and having a low amount of body fat may also increase this risk. In addition, some cancer patients who are unable to be physically active may have reduced blood flow, which can lead to hypothermia.

Don’t be SAD

Ultimately there is the emotional and psychological impact of the winter season. Weather often affects people’s moods. Sunlight breaking through clouds can lift our spirits, while a dull, rainy day may make us feel slightly gloomy. While noticeable, these shifts in mood generally don’t affect a person’s ability to cope with daily life. As cancer patients, however, we are sometimes more vulnerable to a type of depression that follows a seasonal pattern. For some people living with cancer, the shortening days of late autumn are the beginning of a type of clinical depression that can last until spring. This condition is called “Seasonal Affective Disorder,” or SAD. Luckily there are ways to cope, sitting near a window or getting outside for a short period of time each day can help. Light box therapy is a popular and often very effective way to cope with mild Seasonal Affective Disorder. The lights are effective because they mimic the sun’s rays.

Pursue a Hobby

Winter is the season to take on an indoor hobby, this is especially true if you are facing cancer. When cancer patients undertake these activities, whether individually or with the guidance of a creative art therapist, they stand to benefit psychologically and emotionally. Recently there’s been a trend toward simple or old-fashioned crafts and hobbies such as knitting. Other common winter diversions include baking, building scale models or simply getting lost in a good book. Some adults, including myself, are even using colouring books to relax and reduce daily stress. This concept started several years ago with the publication of Johanna Basford’s Secret Garden. Her colouring book for adults has since been translated into 14 languages and has sold over one million copies.

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The Long Road Back: Physical Fitness After Cancer

One of the aspects of cancer that surprised me the most is the physical toll that it took on my body. From my muscle strength to my ability to endure exercise, I noticed a significant decline in what my body could accomplish immediately after treatment. It didn’t help that near the end of my treatment in 2012 I was hospitalized for seven weeks while my doctors tended to a dangerous and extremely painful bowel obstruction. Nothing had prepared me for the length of my hospitalized, and I seriously don’t think my medical team planned for me to have such an extended stay in an acute care bed on the cancer unit. I will always remember the relief and unrestrained joy that I felt when I was finally discharged from the hospital. However, it wasn’t long before I realized that my ordeal had taken a tremendous toll on my body.

For the first time in my life I learned what it’s like not to be able to walk medium or long distances. It took nearly all the strength I could muster just to stand or walk very short distances, and climbing stairs was out of the question for me. I quickly discovered that the muscles in my legs had atrophied during the endless weeks that I was confined to a hospital bed. On the day I went home I had an absolutely helpless feeling as I was transported from my hospital unit to my mother’s waiting car in a wheelchair. As we drove I knew my recovery would be arduous and probably take months.

walking-exercise

Like many cancer patients, I began slowly and took my recovery one day at a time.  As your ability increases, you should begin to expand your activities, looking to improve your aerobic fit­ness, strength, and flexibility. No one exercise or activity is uni­versally recommended over another. The best exercises or activities are the ones that are safe and that you enjoy (or dislike the least). The central pillar of my exercise routine involves taking a 20-minute walk every day. Study after study has extolled walking as a simple, inexpensive exercise with incredible health benefits. From a cancer patient’s perspective, walking regularly has been proven to strengthen the body and ease the mind. Several recent studies suggest that higher levels of physical activity are associated with a reduced risk of the cancer coming back, and longer survival after a cancer diagnosis.

The amount of exercise you require or that is medically advisable differs among individuals and you should always consult your doctor before establishing a fitness routine. The American Cancer Society recommends that cancer survivors get 30 to 60 minutes of moderate to vigorous exercise at least five days each week. They also give some suggestions for fitting exercise into your day:

  • Start a daily walking routine.
  • Wear a fitness tracker, and try to go a bit farther each day.
  • Walk or bike to your destination, when you can.
  • Exercise with family, friends, or co-workers.
  • Use a stationary bicycle or treadmill.

The evidence linking physical activity with improved quality of life in those undergoing active cancer treatment and those who have completed it is incredibly strong. There are proven emotional and psychological benefits in addition to the physical ones. The most robust evidence is for people who have completed active cancer treatment, notes Dr. Kerry Courneya from the University of Alberta, who has led a number of clinical trials of physical activity in cancer patients. What experts have long suspected has now been proven. As a cancer survivor, exercising could help you live a longer life—free from recurrence.

Essentially there are three main types of exercises that can help cancer patients get back in shape.

  1. Flexibility exercises (stretching). Virtually everyone can do flexibility exercises. Stretching is important to keep moving, to maintain mobility. If you’re not yet ready for more vigorous exercise, you should at least stay flexible.
  2. Aerobic exercise, such as brisk walking, jogging, and swimming. This kind of exercise burns calories and helps you lose weight. Aerobic exercise also builds cardiovascular fitness, which lowers the risk of heart attackstroke, and diabetes.
  3. Resistance training (lifting weights or isometric exercise), which builds muscle. Many people lose muscle, but gain fat, through cancer treatment. For those with a high fat-to-lean mass ratio, resistance training can be especially helpful.

It’s recommend that you consult with your physician or a fitness expert to learn more about which exercises are the best for you. Personally, I know that the road to fitness after cancer can be long and difficult, but it can also be extremely rewarding. Within a year after finishing my treatment, I had progressed from pushing an IV pole down a hospital corridor to completing five kilometres in the Ovarian Cancer Canada Walk of Hope!

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The Problem with Cancer and the Warrior Ethic

I’ve been thinking a lot lately about the controversial, yet commonly held, notion that a cancer diagnosis is a war or a battle that must be won. Doesn’t this philosophy place 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 weren’t strong enough to will it away. I know of plenty of women who’ve succumbed to ovarian cancer and they were among the bravest and most resolute people on Earth. In my opinion, a person’s cancer outcome will depend almost exclusively on medical science. Of course, there are always certain unknown factors or variables—what we sometimes refer to as chance. I’ve learned to face the reality that much of what occurs in terms of my cancer is beyond my individual control, no matter how strong or determined I try to be.

terry-fox-determination

When I was first diagnosed, an iconic image associated with cancer kept going through my mind. I closed my eyes and I could see one of Canada’s most legendary and revered figures, Marathon of Hope runner Terry Fox. I can vividly remember Fox from the photographs and TV clips of my early adolescent years. He continues to represent a certain type of heroism to me, and his legacy offers proof that one person can change the world in the face of tremendous adversity. Nevertheless, it was beyond the young Fox’s control, that his cancer returned and he was forced to stop his Marathon of Hope. In the end, he received multiple chemotherapy treatments and even experimental interferon treatments; in spite of everything, the disease continued to spread. Terry Fox died on June 28, 1981, with his family by his side. My point is that even the heroes among us don’t have it within their power to simply will cancer away.

Well-known screenwriter and producer Josh Friedman was recently diagnosed with kidney cancer, he writes eloquently about the warrior mentality in a personal essay he authored for Time magazine. “Cancer doesn’t give a damn how tough you are,” he argues. “Cancer doesn’t care if you stared down the North Koreans like John McCain, or won the Tour De France like Lance Armstrong.”

Friedman is adamant that patients shouldn’t feel a burden to be brave or to be victorious in some kind of ongoing battle with their disease. “You don’t battle cancer. You don’t fight it. If cancer wants you it sneaks into your room at night and just takes you. It doesn’t care if you’re John Wayne or John McCain.”

“The tough guy narrative is seductive,”  Friedman reminds his readers. “It suggests we have control over our fate, that we can will cancer away. These are lies we tell ourselves. And for some patients that’s helpful. It gets them through the day. For them, it’s a useful tool. But courageousness is a standard that no sick person should feel like they have to meet.”

One popular theory that makes me especially angry is one that links specific personality types to an increased risk of getting cancer. “The Type C Connection: The Behavioral Links to Cancer and Your Health,” argues that the personality traits of some people make them more prone to cancer. Typically, “Type C” individuals are the antithesis of warriors: They are unassertive people-pleasers who repress their emotions.

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Modern researchers have largely debunked the idea that negative emotions heighten an individual’s susceptibility to developing cancer, or that maintaining a positive outlook can stave off cancer’s return or delay its progression. I agree with the majority of oncologists and cancer researchers who argue that there is no evidence to support the idea that personality can influence the growth of malignant cells. There is no cancer for which attitude can halt the progression of disease. A handful of studies have found that women who are anxious or depressed are more likely to suffer recurrences of breast cancer and die from the condition. However, it’s obviously true, and understandable, that dying women are more likely to be anxious and depressed.

A recent article in the Washington Post bore the straightforward headline: “It doesn’t take a warrior to beat cancer. It takes a treatment that works.” The author, Steven Petrow, discusses his opinion that people shouldn’t think that their cancer outcome is primarily in their hands. If someone’s cancer progresses, it’s a failure of the medical treatments that are currently available, plain and simple.

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Keep Your Eyes on the Prize

When the provincial government unveiled the design for the new Calgary Cancer Centre last month, it was arguably the most significant moment for southern Alberta’s cancer community in a generation. The new centre will reportedly have twice as much space available for clinical trials and for patient treatment as the aging Tom Baker Centre now has. Construction of the facility at the Foothills Medical Centre, which is already Alberta’s largest hospital complex, will start later this year.

PCL Construction Management Inc. was awarded a $1.1 billion design-build contract for the cancer centre. Stantec in conjunction with DIALOG, will ultimately be responsible for the architectural and interior design of the new cancer centre, as well as structural and electrical engineering. Stantec will also provide civil and transportation engineering expertise.

newcalgary-cancercentre

​The new facility will be located at the northeast corner of the Foothills campus. It will span more than one million square feet. The design includes a 1,650-stall underground parking garage and a 984-linear foot elevated walkway connecting it with other parts of the Foothills campus.

Services at the new cancer centre will include:

  • outpatient cancer clinics
  • more than 100 patient exam rooms
  • 160 inpatient unit beds
  • more than 100 chemotherapy chairs
  • clinical and operational support services
  • double the space for clinical trials
  • research laboratories
  • 12 radiation vaults
  • double the capacity to treat patients with the best technology

“What this building allows us to do is really integrate care across the cancer continuum and integrate cancer research and education within the cancer care delivery model,” said Dr. Sunil Verma, the medical lead for the new facility.

Verma said that with one in three Albertans expected to be diagnosed with cancer at some point in their lives and a five per cent growth rate each year, the existing Tom Baker Cancer Centre will soon be stretched beyond its capacity.

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Premier Rachel Notley (L), Associate Minister of Health Brandy Payne, and cancer survivor Susan Cardinal examine a 3D model of the future Calgary Cancer Centre.

Personally, I’ll miss the iconic Tom Baker Centre, but I look forward to the opening of a desperately needed new building. Like the majority of patients undergoing treatment at the Baker Centre I have mixed feelings regarding my experience. I’m definitely impressed by the top-notch care I’ve received from the dedicated staff and volunteers. However, I’m alarmed by the all too obviously crowded quarters. On my visits I find it impossible not to notice how filled to capacity the building is—I’ve been subjected to the overflowing parking lot, the busy chemotherapy beds and the standing room only waiting areas.

The Tom Baker Cancer Centre has been serving men and women diagnosed with cancer for approximately a generation now; it opened its doors over 30 years ago in the early 1980s. At the time, Albertan’s marveled at the spacious and innovative new facility. There was incredible pride in the centre by those involved in its creation. The building had been meticulously designed to provide cancer care for Calgary’s population of 600,000 and the rest of southern Alberta. What is more, the new Baker Centre had cutting-edge technology, a first-rate young staff and space, an abundance of space.

I can imagine what it was like for those involved, because the sense of joy and anticipation among patients and their loved ones is once again palpable. It’s a sweet victory, we’ve waited over a decade and withstood the disappointment of several broken promises to build a new Calgary cancer centre. I can’t be certain what my future will bring or what role the new cancer will play in my life. But with construction scheduled to begin in just a few months, and completion planned by 2023, I’m reminded of a popular American Civil Rights anthem.

Now only thing I did was wrong
Staying in the wilderness too long
Keep your eyes on the prize, hold on

The only thing we did was right
Was the day we started to fight
Keep your eyes on the prize, hold on

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Why You Should Read When Breath Becomes Air

I highly recommend reading Paul Kalanithi’s bestseller, When Breath Becomes Air, especially if you’re dealing with a cancer diagnosis. At the age of 36, on the verge of completing a decade’s training as a neurosurgeon, Kalanithi was diagnosed with inoperable lung cancer. One day he was a doctor treating the dying, the next he was a patient struggling to live. When Breath Becomes Air is a life-affirming reflection on facing our mortality and on the relationship between doctor and patient. I was often mesmerized by the author’s writing skills, almost a little envious that he could be both a talented physician and such an outstanding creator of non-fiction. There are passages in the book where Kalanithi perfectly captures what it’s like to suddenly be living with cancer.

“Severe illness wasn’t life-altering, it was life-shattering. It felt less like an epiphany—a piercing burst of light, illuminating What Really Matters—and more like someone had just firebombed the path forward.”

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Jocelyn P. Newark, R.N. talks with Dr. Paul Kalanithi at the Stanford Hospital and Clinics in February 2014.

I was also struck by a section in which Kalanithi expresses his desire to make the most of what time he has left. One frustrating irony for many of us with cancer is that the physical limitations of the disease don’t allow us to engage in fast paced or frenzied activity.

“Time for me is now double-edged: every day brings me further from the low of my last relapse but closer to the next recurrence—and, eventually, death. Perhaps later than I think, but certainly sooner than I desire. There are, I imagine, two responses to that realization. The most obvious might be an impulse to frantic activity: to “live life to its fullest,” to travel, to dine, to achieve a host of neglected ambitions. Part of the cruelty of cancer, though, is not only that it limits your time; it also limits your energy, vastly reducing the amount you can squeeze into a day. It is a tired hare who now races. And even if I had the energy, I prefer a more tortoiselike approach. I plod, I ponder. Some days, I simply persist.”

As a neurosurgeon, the author is able to examine the doctor-patient relationship from both sides. His illness also helps him to assess his values, including some of the ultimate objectives of medicine and those who practice it. A dying Kalanithi writes eloquently about his profession and why he chose to dedicate himself to such a demanding field.

“The physician’s duty is not to stave off death or return patients to their old lives, but to take into our arms a patient and family whose lives have disintegrated and work until they can stand back up and face, and make sense of, their own existence.”

“Our patients’ lives and identities may be in our hands, yet death always wins. Even if you are perfect, the world isn’t. The secret is to know that the deck is stacked, that you will lose, that your hands or judgment will slip, and yet still struggle to win for your patients. You can’t ever reach perfection, but you can believe in an asymptote toward which you are ceaselessly striving.”

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Dr. Lucy Kalanithi and Dr. Paul Kalanithi with their daughter, Elizabeth Acadia.

When Breath Becomes Air is a heartbreaking and ultimately beautiful reflection on the meaning of life as well as our own mortality. What makes life worth living in the face of death? What do you do when the future, no longer a ladder toward your goals in life, flattens out into a perpetual present? These are the issues that many people with cancer are confronted with and that Kalanithi writes about so passionately and eloquently.

“I began to realize that coming in such close contact with my own mortality had changed both nothing and everything. Before my cancer was diagnosed, I knew that someday I would die, but I didn’t know when. After the diagnosis, I knew that someday I would die, but I didn’t know when. But now I knew it acutely. The problem wasn’t really a scientific one. The fact of death is unsettling. Yet there is no other way to live.”

Paul Kalanithi died on March 9, 2015, surrounded by members of his large and devoted family. While mourning her husband, Kalanithi’s wife helped to see his manuscript through to publication. Thanks to When Breath Becomes Air, those of us who never met the young doctor will both lament his death and benefit from his extraordinary life.

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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.

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Poetic Discourse

National Poetry Month, which takes place each April, is a celebration of poetry introduced in 1996. National Poetry Month began in the U.S. spearheaded by the Academy of American Poets on the steps of a post office in New York City. There, the story goes, Academy staff members handed out copies of T.S. Eliot’s poem, “The Waste Land,” which begins, “April is the cruellest month…” to individuals waiting in line to mail their tax returns.

Those of you who follow The Teal Diaries are aware that I write prose, however I’ve been inspired during my cancer treatments to pen a small collection of poetry. Here I’ve chosen to share two of my short poems. My compositions Patient’s Lab Results and A Visit to the Emergency Room both explore the life altering power of a cancer diagnosis.

 

Patient’s Lab Results

The sun is preparing to set on a late autumn afternoon,
its rays hold me together as I fall asleep dreaming of
my immaculate incision. Scarcely a week since my surgery.
I almost laugh to think I was such a novice.
Such a common virgin.

I pass through sliding doors to a point of no return.
Then I enter a vacant waiting room,
a place that is sinister, foreboding.
How many women have waited in these chairs?
How many innocent lives transformed?

“The ultrasound shows a growth on your ovary.”
“You need surgery to remove your uterus and right ovary.”
“You have cancer.”

Ultimately, he arrives, seeming anxious to print the pages.
“Here, this is for you.”
His words turn to ice as he offers me the pathology report.
Warmth as he grasps my hand, lending some reassurance.

My world dissolves as I take ownership of a disease.
The rapidly dividing cells, the cancerous tumors,
the abhorrent malignancy.

“Adenocarcinoma of the endometrium”
“The uterine cavity is completely filled with light tan neoplasm.”
“Right ovary with synchronous endometroid adenocarcinoma”

 

Immunotherapy one

 

A Visit to the Emergency Room

Riding unending waves of pain and nausea,
I take a secret pride in my endurance.
The sign over the door says MINOR EMERGENCIES.
Should I draw attention to this irony?

The young nurses seem aloof, peering out from
behind their curtain. I sense that we are to be
endured until morning comes. Around me
are the homeless, the destitute the addicted.

The fluorescent lights have been turned low,
casting a pale greenish tinge across the room.
Beeping monitors and moaning
patients provide the soundtrack.

I wonder if these souls feel entirely unaided,
abandoned, alone amid the chaos.
Each of us is fighting a singular
and solitary battle.

A torrent of frustration, then drowning I panic.
I want to scream that I’m a cancer patient
and my bowels are blocked.
I long for them to have evidence.
When will they be convinced?
I’m a bloated organ about to rupture.

The pre-dawn hours break like a fever
and I emerge from my delirium.
The kind eyes of the doctor and the
contrite look on the nurse’s face.

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