We’re all familiar with the depiction of cancer on TV. Someone goes to the doctor for a couple of tests. In the very next scene, they are in the doctor’s office. The grave faced doctor gives them the bad news. A minute later, they are in the hospital hooked up to an IV in their arm. Shortly after that, they lose all their hair and spend most of their time bed ridden.
Unfortunately, this isn’t everyone’s cancer experience. Some of this is also an oversimplification of the whole cancer experience. I will tell you about what I learned from my won experience. However, I encourage you to do your research, because everyone’s cancer experience is different.
Why should you listen to me? Because I had cancer myself and went through a very strong chemotherapy regimen.
Disclaimer: You might not want to read this if you are currently going through chemotherapy or about to start. This article has emotional triggers. It discusses much of the hardship that can happen during chemotherapy.
First, let me go through some of the things fiction often gets wrong.
Chemotherapy is not often delivered through a needle in a vein in the arm.
If someone is getting chemo on a regular basis, they would most likely be given a device called a port.
The port is a device used to draw blood. It is surgically placed under the skin, usually in the right side of the chest. It is attached to a catheter (a thin, flexible tube) that is guided (threaded) into a large vein above the right side of the heart. It is placed there because that is the biggest vein in the body. During chemo sessions, a needle is inserted through the skin into the port to draw blood or give fluids.
The port must be cleaned with a saline flush every few weeks. The port will stay in the patient for many weeks, months or even years. When I had a port, it looked like a bump beneath my skin. My doctors gave me a heart-shaped port–as if the heart shape was supposed to make the whole experience of cancer more cheerful. I was put to sleep when the port was surgically put in me. Yet when it was taken out, they actually did the surgery while I was awake. My doctor simply used a local anesthetic to numb the area.
Getting surgery while awake was a very bizarre experience. Even though it wasn’t painful, the pressure on my chest and the noise of the drill made it all very unsettling. I cracked a lot of jokes with my surgeon to put myself more at ease.
Giving your character a port can serve as a way to dramatize the experience of cancer while also showing the audience that you did your research.
Cancer patients don’t always get their diagnosis right away.
In the movies, a patient gets their diagnosis in like five minutes. In real life, it often takes a month of tests and waiting to hear one’s results. People in the cancer community call the anxiety induced by this waiting period, “scanxiety.” Even though I understand that things can’t happen in real time in fiction, overlooking this waiting period is a missed opportunity. This waiting period is an opportunity to build tension.
Many forms of cancer today are survivable.
Of course this all depends on the type of cancer and the stage. But often in fiction when someone gets cancer, the immediate assumption is that they are going to die. The reality is that for a well researched and well funded disease like Breast Cancer, about 85% of patients will survive. Especially if they are young and have no other pre-existing conditions.
Survival is less certain for people with a Stage IV cancer. So if you want to heighten the drama or the risk of death, give the character a rare form of cancer or a late stage where the cancer has metastasized throughout the body.
Chemotherapy patients can live healthy, normal lives
A common fictional depiction of a chemotherapy patient is that they have lost all their hair, or are stuck in bed for months. While this is the case for some cancer patients, this isn’t the case for all of them. There are many different types of chemotherapy treatment, and different people have different reactions. And not all patients need chemotherapy. For some, surgery or radiation is good enough.
Some chemotherapies don’t cause hair loss. Some chemotherapy only makes a patient sick for a few days, and then they go back to work afterward. Some chemotherapy doesn’t even make the patient nauseous. It really all depends on the person’s diagnosis, treatment plan, as well as their own health.
I did lose my hair and become nauseous. But I was actually able to work throughout the majority of the chemotherapy process. Usually I would be nauseous for a couple of days after treatment, but then feel normal for the next few weeks until I got another infusion. I got one infusion every three weeks.
Overlooked Realities of Cancer:
Below I will list the realities of cancer that are often not captured in fiction. And yet these realities can still make for good drama, characterization and story telling.
Even though there are many forms of cancer that can be survived, there is drama to be found in the struggle after survival.
Many people assume that once the patient is finished with chemotherapy, all the hardship is over and they go off to live happily ever after. Yet the reality is that there are struggles to be found in the aftermath of cancer. Some patients experience a decreased quality of life. Some patients had to make large sacrifices in order to survive their prognosis: giving up a job, leaving an unhealthy relationship, surgically removing a body part or even giving up their own fertility.
While I am sure that most medical professionals have a genuine interest in “doing no harm,” there is the unfortunate reality that medical abuse does happen. Often it’s not out of malevolence. It’s from medical professionals being tired and overworked, or it’s from inept employees keeping their job because the practice is short-staffed.
Regardless of the reason, many people with chronic illness have had a case of their health providers making a mistake, not taking them seriously, not being professional, or causing a problem by trying to rush.
I myself had a chemotherapy nurse who made mistakes on me three times. After the third time, I reported her to the clinic’s supervisor. He said that they basically had an entire book of complaints about this woman, but that there was nothing they could do since they needed the staff. I then even wrote to my state medical board to complain about her, since other patients and nurses privately told me they were unhappy. And yet nothing happened.
In the U.S., black women have the highest rates of death from breast cancer and cervical cancer.
Studies have shown that the African American community faces discrimination and implicit bias in the medical setting.
Dayna Bowen Matthew’s book, Just Medicine: A Cure for Racial Inequality in American Healthcare (2015), explores the idea that unconscious biases held by health care providers might explain racial disparities in health.
If there was an author who wanted to highlight this disparity, I think that would make for a compelling and powerful story that needs to be told.
Cancer patients can experience denial about their illness.
Facing the reality that one has a deadly illness is not easy. There are different reactions to threats. Fight, flight, or freeze. Some people choose to ignore the problem and pretend it doesn’t exist. Some people engage in magical thinking or buy into snake oil solutions. Even Steve Jobs (one of the wealthiest men on the planet) refused medical treatment for his cancer, because he thought he had other solutions. He ended up dead.
My doctors have told me sad stories about patients who had entirely treatable cancers, but ended up dead because they refused treatment.
There are people who try to control a cancer patient’s treatment.
When I was undergoing treatment, I had the experience of people pressuring me not to get chemotherapy or surgery. I had to tell these people in the most polite way to leave me alone.
Cancer patients often have to make a series of life altering decisions in a short amount of time.
This is another reality of cancer that could make for good drama in a book. People often have just a few weeks to make choices about their surgery, radiation treatment, chemotherapy regimen, and fertility preservation procedure. Surprisingly, there are many different options to choose from, and doctors often make their patients choose instead of telling them what to do outright. This can definitely lead to decision fatigue, as most people are not used to making a bunch of life altering decisions about their bodies in a matter of weeks.
Romantic partners can become MORE abusive after a diagnosis.
Most people would imagine after a cancer diagnosis that a person’s romantic partner would become more supportive. It’s hard to imagine a person being abusive to a cancer patient. It seems downright rotten in fact. And indeed, many people do have partners that step up and become extra supportive after a diagnosis.
However, this is not the case for everyone.
Unfortunately, what I have learned from being part of the online breast cancer community, is that partner abuse can actually escalate (rather than de-escalate) after a diagnosis. This was something I saw numerous women discuss. They often had stories about how once they started going through chemotherapy and surgery, their husbands would start becoming more distant or abusive.
What explains such horrible behavior? My own theory is that if a person is in a partnership where they are doing much of the housework, child care, or finances, and then they suddenly stop, the other person can become more stressed out as they take on a greater load. Not everyone is capable of taking on this extra load without becoming stressed out and toxic in the process.
There are also people who cheat on their partners or leave them after diagnosis.
Men more likely than women to leave partner with cancer (Reuters)
Divorce Risk Higher When Wife Gets Sick (The New York Times)
Cancer patients and domestic violence: More common than you might think (MD Anderson)
The Loneliness of Cancer
After I shared this article, many other people who experienced cancer also mentioned the loneliness of cancer.
On TV they often make it look like cancer patients are constantly surrounded by a large, supportive group of friends and family members. This certainly is the case with some people. But this isn’t always the case. There are often people who go through cancer alone. There are also people who had family members supporting them at first. But then when these family members realized that the ordeal was going to go on for months or even years, they backed off.
Cancer patients have to spend a ridiculous amount of time consoling OTHER people about their own illness.
Cancer is a scary thing. And when the loved ones of a cancer patient find out about their illness, they do a number of things. They freak out, cry, and go into panic mode. Indeed, most people aren’t taught how to deal with the reality of a loved one having a chronic or deadly illness. So unfortunately, many people can start unloading on the cancer patient themselves with the expectation that the cancer patient is supposed to do the emotional labor of dealing with all their fears and woes.
And yet the cancer patient does NOT want to hear someone tell them, “You’re gonna die! I’m so scared you’re gonna die!” People would say this stuff to me all the time. I had enough of my own worries to deal with, I didn’t need other people unloading on me at the same time. I had to tell people in the kindest way possible to STFU.
Some women lose their fertility after their battle with cancer.
The battle with cancer is already traumatic enough. But it’s an extra stab of the knife afterward when a woman may have to give up her dreams of being a mother. This isn’t always the case. If a woman is young, there is still a good chance she could give birth, but it becomes harder the older a woman gets.
There are medical treatments that can potentially preserve fertility, but they are not full proof.
Egg freezing, for example, is ridiculously expensive. It usually costs over $10,000, and most of the time, health insurance won’t cover it. Also, when I did my own research, I found that the results weren’t even that effective. The overall chance of a live birth from a frozen egg is 39%.
Many cancer patients become more spiritual as a result of their struggles.
So far, much of what I said was negative. But, there are some positives as well.
As the old expression goes, there are no atheists in foxholes. When someone has to face their own mortality in addition to going through scary and uncomfortable medical procedures, the belief in a higher power can go a long way.
Many cancer patients end up realizing what is truly important in life.
There’s nothing like confronting your own mortality to make you realize what’s truly important. Many cancer patients change their lives for the better after defeating their illness. This can involve making healthier choices, getting out of a toxic relationship, pursuing a job that they always wanted, prioritizing family and friends, and becoming internally stronger overall.
Despite all the negatives I’ve mentioned, cancer survivors are often very emotionally strong people.
I hope this was helpful to you. Now go write something cool and feel free to share it in the comments.
Coping with Global Pandemic – Thoughts From a Cancer Survivor (Stories From Tomorrow)
My Stories About Illness:
“Artisanal Cancer” (Teleport Magazine)
How far will an influencer go to get likes? In this short story about a post scarcity future, people are literally killing themselves out of boredom. Chemotherapy treatment has become the next edgy fad.
“The Red Devil” (Vine Leaves Press)
This is a 50 word story about chemotherapy treatment.
“Fibromyalgia Fire” (Cuento Magazine)
This is a microfiction about fibromyalgia.