10 Things I Wish I Had Done Before I Was Diagnosed With Cancer

I’m convinced that nothing can fully prepare a person for the impact of a cancer diagnosis, but there are still things that I wish I had done before cancer became a part of my life. As a five-year cancer survivor I now have the wisdom of hindsight, so I’ve chosen to share my definitive list of what I wish I had accomplished when I was still healthy.

to-do-list

Have a Plan Regarding My Work and Income

It’s important to have a strategy in the event that you suddenly become unable to work due to illness or disability. Unfortunately I was unprepared and learned this lesson the hard way. If you’re a self-employed individual, such as a freelancer or independent contractor, you may be especially vulnerable if circumstances ever render you unable to work for the long-term.

Go Out and Experience New Things

When I was still in good health, I made too many excuses about why I couldn’t go out to events or experience new things. I’m basically an introvert and prefer to stay in, it’s for couples only, I can’t afford it, the transportation and commute are too much of a hassle were some of the issues I’d focus on when ruling out gatherings or events.

Be More Physically Active

I regret not going for long walks or spending more time outdoors in the years leading up to my cancer diagnosis. Science has essentially proven that people who are active have an advantage compared to those who don’t exercise. Active individuals tend to live longer, healthier lives than their sedentary counterparts.

Purchase a Disability Insurance Plan

This is something I really regret not taking care of and I strongly urge anyone without this type of insurance to look into a plan. The only alternative to private insurance if you suddenly become chronically ill or disabled is most often government assistance.

Listen to My Body

Ovarian cancer is sometimes called the “silent killer” because its symptoms are often subtle or mimic other less serious illnesses. It’s important to know what is normal for your body and to be alert to any changes that might indicate a problem. I wish I had been more in tune with my body and more persistent with my doctors.

Develop a Support Network

When I was diagnosed with cancer I quickly realized that my social support network is very small. Specifically, I’m single, come from a small family of origin and have few close friends. I understand that some of this isn’t under my control, but I definitely wish I had been more diligent about building a network when I was still healthy.

Pay More Attention to My Relationships

If you have conflicts in your family relationships or have simply drifted apart, I suggest you reach out to repair whatever damage might have occurred over the years. Once you are diagnosed with a chronic illness you suddenly comprehend the value of having strong bonds with family members, including your parents, spouse, siblings and children.

Be Prepared For People’s Reactions

When people learned of my cancer diagnosis their reactions sometimes caused me resentment, frustration or anger. They meant well, but I could have been more prepared for their sometimes inappropriate remarks and gestures. Many individuals are misinformed about the scientific facts surrounding cancer or don’t know how to properly reach out to a friend who has been diagnosed with the disease.

Catch Up on Things I’ve Let Slide

We all have a tendency to procrastinate or push tasks and projects to the back burner. When I became ill I suddenly realized how many things were left undone and how many loose ends I should have tied up. If you have been meaning to buy some essential new pieces for your wardrobe, need new glasses or need to get your car or computer serviced, do it now!

Establish an Outlet For Anger and Grief

The universal emotions for nearly all cancer patients are anger and grief—intense anger that can border on rage and a grief that can feel like a bottomless well of despair. To maintain your emotional health you’ll need an outlet for these feelings. It might be a friend, therapist or support group, but it’s important to have someone that you can confide in without fear of judgment

 

Leave a comment

Filed under cancer financial impact, cancer psychological impact

Five-Year Survivor: On Reaching Another Cancer Milestone

timepiece

In just a few weeks I’ll face an emotional and bittersweet milestone, the fifth anniversary of my cancer diagnosis. Above all I’m grateful that I made it through the grueling medical treatments that I had in 2011 and 2012. There were moments when I felt so sick and physically weak from surgery or chemotherapy that I was afraid I might die. I thank God for my oncology team; they were always there and never stopped encouraging me. It turns out they were right to be optimistic about my prognosis, or at least to be confident that I could achieve remission. I’ve been in remission from ovarian cancer, a disease that many refer to as the silent killer of women, for four years now.

As my cancer anniversary approaches, I’ve been thinking a great deal about how much things have changed for me. Personally, I’ve discovered that physical attractiveness, material possessions and social status all matter less to me now. These things frequently seem to fade into irrelevance as I confront a life-threatening illness. Meanwhile, my relationships with other people, discovering ways that I can make a difference in the world and learning more about the essence of who I am are currently at the forefront of my agenda and have an extremely high priority to me.  Most of all, I’m aware of time and of the immeasurable value of each day that I’m alive. Here are some powerful meditations that I though I would share.

“I ask you to imagine that there is a bank account that credits your account each morning with $86,400. It carries over no balance from day to day. Every evening the bank deletes whatever part of the balance you failed to use during the day. What would you do? Draw out every cent, of course.

Each of us has such a bank, its name is time. Every morning, it credits you 86,400 seconds. Every night it writes off at a loss, whatever of this you failed to invest to a good purpose. It carries over no balance. It allows no overdraft. Each day it opens a new account for you. Each night it burns the remains of the day. If you fail to use the day’s deposits, the loss is yours.

There is no drawing against “tomorrow.” You must live in the present on today’s deposits. Invest it so as to get from it the utmost in happiness and health. The clock is running. Make the most of today.”

 — Marc Levy, French novelist

“It’s being here now that’s important. There’s no past and there’s no future. Time is a very misleading thing. All there is ever is the now. We can gain experience from the past, but we can’t relive it; and we can hope for the future, but we don’t know if there is one.”

― George Harrison

“You must live in the present, launch yourself on every wave, find your eternity in each moment. Fools stand on their island of opportunities and look toward another land. There is no other land; there is no other life but this.”

— Henry David Thoreau

 

dead-poets-society1

In the film Dead Poets Society Robin Williams plays an unconventional English teacher named John Keating. In one of the movie’s most memorable scenes the teacher stands with his students gazing at some vintage school portraits. As they view the photographs of previous generations, this is what Keating tells the group of young men in his class:

“They’re not that different from you, are they? Same haircuts. Full of hormones,  just like you. Invincible,  just like you feel. The world is their oyster. They believe they’re destined for great things,  just like many of you, their eyes are full of hope,  just like you. Did they wait until it was too late to make from their lives even one iota of what they were capable? Because, you see gentlemen, these boys are now fertilizing daffodils. But if you listen real close, you can hear them whisper their legacy to you. Go on, lean in. Listen, you hear it?   Carpe   hear it?   Carpe, carpe diem, seize the day boys, make your lives extraordinary.”

Leave a comment

Filed under cancer psychological impact

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.

 

 

1 Comment

Filed under cancer doctor-patient relationship, cancer psychological impact

Because it’s 2016: A New Era for Cancer Patients

Few doctors in this country seem to be involved with the non-life-threatening side effects of cancer therapy. In the United States, baldness, nausea and vomiting, diarrhea, clogged veins, financial problems, broken marriages, disturbed children, loss of libido, loss of self-esteem, and body image are nurses’ turf.

Rose Kushner

One of the most stunning realizations that I’ve had since being diagnosed with cancer is how much cancer impacts the whole person—the disease can undermine almost every aspect of a person’s life. The field of oncology acknowledges this, at least more than it did four decades ago when American journalist Rose Kushner spoke these words. 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.

At my cancer centre there are now two forms that patients are asked to fill out at every checkup. The first contains questions to gage a patient’s physical wellbeing as they go thorough treatment, but a second questionnaire was recently added. This latest form is used to gather information about the various psychosocial issues that are associated with cancer. Certain social, financial or mental health issues may need to be addressed. While I sometimes resent having to answer what I consider highly personal questions, I realize the importance of asking cancer patients about almost every aspect of their lives.

 

Research Breakthroughs

 

immunotherapy two

Dr. Barbara Vanderhyden, one of Canada’s preeminent ovarian cancer researchers, recalls that when she began her work she was one of the only people in Canada researching the disease. Over a decade ago Vanderhyden started the Canadian Conference on Ovarian Cancer Research and now the community has grown from three people to more than 60 ovarian cancer researchers across the country. This flourishing research community has led to a number of recent discoveries. For instance, it is now known that ovarian cancer is not one disease but a spectrum of diseases with different responses to treatment.

I’m frequently amazed at the lightening speed at which new cancer treatments are being discovered and implemented. For example, immunotherapy is an emerging approach to treatment that boosts the immune response to cancer. It enables the body to target and destroy cancer cells. There are three main areas of immunotherapy that are showing promise.

  • Vaccines that enhance immune system response
  • Inhibitors that affect how the immune system regulates itself
  • Adoptive T-cell transfer, which removes a patient’s cancer-fighting T-cells and activates them before returning them to the bloodstream

Although gynecological cancers, such as mine, have seen only modest breakthroughs in immunotherapy, melanoma and lung cancer are areas that are witnessing great progress.

 

New Targeted Treatments

 

Immunotherapy one

According to many scientists a new era of cancer treatment is beginning in which patients get drugs matched specifically to their tumour. Patients experience longer survival and fewer toxic effects through this approach, which is being made possible by advances in genetic profiling of the tumour itself. Conventional chemotherapy and radiation treatments have both short-term and long-term side effects and can be absolutely brutal for patients to endure. These treatments kill a significant number of healthy cells in addition to the cancer cells. “At the moment it’s more like using a cannonball to kill an ant – and creating a whole lot of damage at the same time,” explains professor Roy Herbst, chief of medical oncology at Yale Cancer Centre.

Meanwhile a UK trial, called Optima, is being run by University College London and Cambridge University and funded by Cancer Research UK. Beginning this summer, it will recruit 4,500 women with breast cancer. The women’s tumours will be genetically tested as soon as they are diagnosed to establish which will respond to chemotherapy and which will not. Of the 50,000 or so women diagnosed with breast cancer in the UK each year, about 40 per cent, or 20,000, are currently given chemotherapy but only half of them do well as a result of it; in the other half, the benefit is unclear. The researchers hope to find out which of the latter group actually need chemotherapy. As one oncologist emphasized: “In some ways it is simple – it means that you can make sure you are giving the right drug to the right person at the right time. In others it is very complex, because there are so many pieces to the jigsaw. We need to put the puzzle together.”

1 Comment

Filed under cancer research

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.

IMG_0221

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).

Leave a comment

Filed under cancer doctor-patient relationship, cancer research

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

1 Comment

Filed under Uncategorized

It Takes Lady Balls

As an ovarian cancer patient I’ll admit that I often feel overwhelmed by the dismal survival statistics and apparent futility of fighting such a deadly disease. Approximately 2,800 Canadian women are diagnosed with ovarian cancer each year and five women die from the disease every day. Currently, there are more than 17,000 of us in Canada living with the disease. The relative statistics are similar in the United States where 21,000 women will be diagnosed with ovarian cancer this year, and 14,000 will die from it.

Because the symptoms are usually subtle and there is no reliable screening test, ovarian cancer is frequently misdiagnosed or not discovered until it has reached an advanced stage. This makes treatment difficult, which is a key contributor to its high mortality rate. Ovarian cancer has a five-year survival rate of around 46 per cent, compared to nearly 90 per cent for breast cancer.

Each year at the Ovarian Cancer Canada Walk of Hope I’m proud to join a small but dedicated group of teal shirted survivors. Other participants in this key fundraising event wear white shirts— many in attendance at the walk are the husbands, children or grandchildren of those who have recently passed away. Unfortunately, since so many of us diagnosed with ovarian cancer die quickly after our diagnosis, the support network that typically forms around a cancer patient moves on quickly, creating what some have called a “leaky bucket” of advocates for the disease.

ladyballs

I was delighted this January when Ovarian Cancer Canada launched Ladyballs, their boldest and most successful marketing campaign to date. Their marketing team knew that to be successful they would need to create a slogan that could be heard above the din of other national campaigns. So rather than focusing on sad facts to illicit sympathy, the team at Ovarian Cancer Canada chose to focus on the tremendous strength of survivors and the power we all have to do something about women’s most fatal cancer.

Marketing executive and ovarian cancer survivor, Lauren Richards, spearheaded Ladyballs. Richards is a former Cossette Media and Starcom MediaVest Group executive who has operated her own Toronto media consultancy since 2013. She enlisted Canadian broadcasters, newspapers, magazines and online publishers to donate several million dollars worth of space and time for the campaign.

Those behind the promotion knew from the start that they were up against organizations that have become brands in and of themselves. For example, Movember is a brand for prostate cancer and Run for the Cure is an iconic brand in the fight against breast cancer. Knowing they had such low awareness and little money, it was a daunting task.

The Ladyballs campaign’s most visible component is a video spot in which women show their so-called “lady balls” by demonstrating chutzpah in the face of pressure or adversity. “Check out the lady balls on her,” one woman says to her co-worker after a female employee disagrees with a male boss’s decision during a meeting. “Look at the lady balls on her,” says a male announcer when another woman goes all-in during a televised poker tournament. In the concluding voiceover an announcer informs viewers that women have balls–their ovaries–and they’re always at risk. Viewers are then directed to donate to the cause at ladyballs.org.

ladyballs2

As expected, the campaign has been highly controversial. Some critics say the ad insults women by comparing a uniquely female body part–the ovaries–to men’s testicles. They say that women don’t have to stoop to that level to promote an informed discussion. However, I personally disagree with this view. I hold the same opinion as Matt Miggins, a nursing student at St. Clair College in Windsor.

“They are not mad five women a day die from this?  I find it ironic that they are mad about words. People should be mad at the fact this is happening to our mothers, sisters and wives,” said Miggins. He said he thinks people should put things into perspective. “People need to ask themselves, if the word balls saves just one life, is it then worth it?”

According to Ovarian Cancer Canada, the campaign has been instrumental in raising awareness. Ladyballs has been responsible for a significant increase in requests for By Your Side, a resource provided to women diagnosed with the disease. It’s also led to a spike in calls to offices across the country, with callers citing the campaign as their reason for reaching out. One woman who heard a Ladyballs radio commercial immediately pledged $100,000 to the organization, and the campaign has garnered approximately $60 million in earned media impressions since its January debut.

Leave a comment

Filed under Uncategorized