Category / cancer financial impact

by Jacqueline Chartier

Five Brutal Truths About Having Cancer

You will realize that life is often random or unfair.

Psychologists have observed that as human beings we tend to uphold something called the just world hypothesis or just world fallacy. We cling to the idea that the world is a fair and orderly place where what happens to people generally is what they deserve. In other words, bad things happen to bad people, and good things happen to good people. However, when an individual is diagnosed with cancer their sense of stability and belief in a just or fair world is often shaken— they can no longer rationalize much of what they thought was true. Some cancer patients become distressed, especially when they recognize that according to the just world hypothesis, they must somehow be responsible for their disease or deserve it. Many are forced to reassess their personal beliefs when it becomes clear to them that such an assumption isn’t valid.

Your closest relationships will be severely tested.

I’ve discovered that becoming ill with cancer has required me to analyze and redefine the relationships I once had, particularly with those closest to me. In many cases I’ve set new boundaries, as I will no longer tolerate toxic or unhealthy relationships. Some personal and business connections that I maintained before are finished, as a rule I’ve chosen not to stay in contact with people who were unable or unwilling to support me throughout my cancer journey. 

Most importantly, no one has the right to tell you how to respond emotionally to your cancer or to lecture you about how you should live your life after a diagnosis. Early in my cancer journey, I was confronted by a couple of individuals who insinuated that I should not allow cancer to change my life. How could I have not changed? I refuse to go back to the way I was before I had cancer. I see that as a complete waste of all that I’ve been through. 

You may be faced with financial hardship.

Financial toxicity doesn’t have an official definition. But generally speaking, it’s defined as a financial burden or hardship a patient experiences as a result of their cancer diagnosis. The financial hardship might be related to the diagnosis itself, the symptoms associated with it or the cost of the treatment and any associated health care that they’re receiving.

How a person’s cancer impacts them financially is influenced by many factors, where they live, their age and their marital status are issues that often come into play. Financial toxicity may look different depending on the patient and their situation. It may be something as straightforward as difficulty paying for medical visits, treatments or out-of-pocket expenditures, which can cause an individual to change the way they spend, borrow money or potentially delay or avoid care. 

Your overall health could be affected forever.

A large number of cancer survivors experience permanent changes to their body as a result of the disease or its aggressive treatments. The long-term impact of cancer can vary from relatively minor health problems to serious chronic health issues or disability. The most famous example I can think of is Terry Fox. In 1980, with one leg having been amputated due to osteosarcoma, Fox embarked on an east to west cross-Canada run to raise money and awareness for cancer research. Although the spread of his cancer eventually forced him to end his quest and ultimately cost him his life, his efforts resulted in a lasting, worldwide legacy. 

While I’m currently in remission, those dark days of surgery and chemotherapy have permanently changed my body. I’ve had to accept physical changes including the fact that my abdomen is severely scarred and that I have significantly less energy or vitality thanI did in the past. It’s also worth mentioning that, like Terry Fox and others, I’ve had to deal with disability. In my case I had substantial hearing loss prior to my cancer diagnosis, but the toxic chemotherapy drugs that were used robbed me of even more.

You will witness many other cancer patients die.

The most unbearable thing for me as a long-term ovarian cancer survivor has been knowing so many women with this insidious disease, it can be heartbreaking when I witness them gradually deteriorate or succumb to it. The famous American author and civil rights activist Audre Lorde received a diagnosis of breast cancer at the age of 44. While the prognosis isn’t usually as grim as for ovarian cancer, Lorde was still compelled to reflect on her mortality and the intimate connection she felt toward other women. “I carry tattooed upon my heart a list of names of women who did not survive, and there is always a space left for one more, my own,” she wrote.

I was diagnosed with the endometrioid type of ovarian cancer in November 2011, and as I approach the tenth anniversary of my survivorship, I too have amassed a list of names. The cruel fact is that each year about  3,100 Canadian women are newly diagnosed with ovarian cancer and an estimated 1,950 die from it.  In Canada, the five-year net survival for ovarian cancer is approximately 44 per cent. This statistic always makes me shudder, on average only about 44 per cent of the women who are diagnosed will survive for at least 5 years. I can only be grateful that I’ve become one of the fortunate few.

by Jacqueline Chartier

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’d 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

 

by Jacqueline Chartier

Weathering the Perfect Storm: Dealing With the Cost of Cancer

The physical, emotional and psychological impact of a cancer diagnosis is devastating enough, but in many situations the disease also inflicts a financial wallop upon its victims. When I was told that I had uterine and ovarian cancer, I was paralyzed with fear and in a state of denial. But soon literally hundreds of details raced through my mind.  As a single, self-employed woman one of my immediate concerns involved my finances and whether I was going to be able to continue working as a freelance journalist. “Oh shit,” I thought. “How many months will I be out of action?”

In their book, Picking Up the Pieces, authors Sherri Magee and Kathy Scalzo describe the types of loss that cancer involves and the damage that it can inflict on our lives. “While we expect to grieve the loss of a loved one, we are unprepared for—even shocked by—the magnitude of loss that comes with a life-threatening illness,” they write. Magee and Scalzo make it clear that the most recognizable form of loss is physical, but they go on to discuss the fact that many cancer patients also experience a loss of income or savings or even the loss of their job.

The financial burden for Canadian cancer survivors is significant. As one might assume there is declining income due to lost wages, EI limits, and gaps in government safety nets. Less obvious are extra costs such as medication, chemotherapy expenses, childcare, travel costs and homecare. These can all become part of the equation when you are dealing with a cancer diagnosis, treatment and survivorship. While everyone’s financial and employment situation will be somewhat unique, there are common elements. For example, within the Canadian context lost income usually has a larger effect than out-of-pocket costs for those battling cancer. Certainly, this has been my personal experience and the experience of most other people I know of.

Senior couple with bills

My freelance business was essentially inactive for approximately one year while I was forced to undergo several major abdominal surgeries and five cycles of chemotherapy. Today, my cancer is in remission and I’ve begun to work again, however understandably I’m no longer able to accept the number of assignments that I used to or handle as many clients. Ultimately family members and government assistance have been keeping me afloat for the past two years. I’ve learned that situations such as mine are prevalent, a study of national wage loss from cancer showed that 91 per cent of households suffer a loss of income or rise in expenses as a direct result of a cancer diagnosis. For some, these pressures become a “perfect storm” and lead to serious financial distress—hardship so severe that some families never recover.

In 2010, the Manitoba division of the Canadian Cancer Society and the Canadian Cancer Action Network coauthored a report focusing on the financial hardship of cancer in Canada. The report titled The Financial Hardship of Cancer: A Call for Action concludes that a lack of awareness and a false sense of security have left Canadians unprepared to deal with these challenges. We are ill-equipped both as individuals and as a society. Most Canadians don’t know that a cancer diagnosis has caused some people to declare bankruptcy, lose their homes, lose all of their savings, make less than optimal treatment decisions or become dependent on taxpayer-funded programs for the rest of their lives. Until cancer comes into their own lives, they believe the myth that all health care is free. Most never imagined that they could face such difficult challenges at such a vulnerable time of their lives. The reality comes as a shock to many.

Cost of prescriptions

For me, reading The Financial Hardship of Cancer simply confirmed many of the facts that I’ve already learned through bitter experience. For example, those hit hardest financially are people with low income and/or no disability insurance—a group that includes a higher proportion of seasonal, part-time or self-employed workers. Regrettably, I consider myself a member of this most vulnerable demographic. Amid all the bad news, however, I did find a glimmer of hope or a reason for cautious optimism. The authors of the report emphasize that there are many opportunities to reduce the possibility of severe income loss following a cancer diagnosis, primarily through improvements to the social safety net.

Above all, the report strongly recommends that programs be aligned with today’s cancer journey. The authors argue that certain federal safety net programs are increasingly unable to meet the needs of cancer patients. For example, some rules are out of step with the increasing survival rate following a cancer diagnosis, and today’s dynamic economy, where job displacement and career interruptions are more common. Obviously such limitations only prevent support programs from fulfilling their ultimate mandate, which is to carry people through difficult times so they can become financially independent in the long term. Modernizing many aspects of the system would not only be extraordinarily beneficial to cancer patients, it could potentially save Canadian taxpayer dollars over time.