Cancer Diagnosis and Identity: Who are you?

One of the most significant mental health issues that I’ve recognized, both in myself and other cancer patients, is what the disease does to our self-identity. It’s as if we have to fight to remain ourselves after we are diagnosed with cancer. There are days when I feel caught in the middle of something. Although it’s true that ovarian cancer has substantially influenced my lifestyle, and to some extent how I view the world, it’s not all I am—I’ve struggled to make even those closest to me understand this paradox. My self-identity is not entirely unchanged, but I will always remain so much more than a cancer survivor or an oncology patient.

Regrettably, over the course of my journey, I’ve learned that our society still has misperceptions about chronic illnesses, such as cancer. and that there is still indignity for those of us living with such conditions. For instance, one family friend became rather reclusive when she was informed that I was going through cancer treatment and behaved as if a cancer diagnosis might be contagious. She further assumed that all chemotherapy patients loose most of their hair and offered to loan me an old wig she had. But then, this legacy isn’t surprising considering the profound fear, confusion and stigma surrounding cancer for centuries. Until relatively recently the word was hardly spoken in public or said out loud. It’s no wonder that some of us living with cancer still choose to avoid revealing our illness to anyone outside of our inner circle of family and close friends. We don’t want to be viewed differently—we just want to be normal, not defined by the disease. 

Of course, the health care system and the medical establishment are especially challenging—we are made to feel anonymous and are often reduced to nothing more than numbers or charts, it hurts that we are being robbed of our individualism. I was personally made to feel an acute lack of identity when some nurses and hospital workers didn’t call me by my correct or preferred name. Their error would stem from the fact that I’ve always been called by my middle name, and not my first like most people. I read a short poem recently that almost perfectly captures the feeling that I had on the cancer unit. Names by Wendy Cope describes a woman as she moves through life’s stages, the author deals with themes such as self-identity, ageing, illness and death. 

Names 

She was Eliza for a few weeks
When she was a baby –
Eliza Lily. Soon it changed to Lil.

Later she was Miss Steward in the baker’s shop
And then ‘my love’, ‘my darling’, Mother.

Widowed at thirty, she went back to work
As Mrs Hand. Her daughter grew up,
Married and gave birth.

Now she was Nanna. ‘Everybody
Calls me nanna,’ she would say to visitors.
And so they did – friends, tradesmen, the doctor.

In the geriatric ward
They used the patients’ Christian names.
‘Lil,’ we said, ‘or Nanna,’
But it wasn’t in her file
And for those last bewildered weeks
She was Eliza once again.

This poem becomes the heart-breaking reality for many cancer patients as we find ourselves navigating the hospital or other medical institutions. We feel ourselves diminished and our individual worth slipping away. As patients much of our privacy and control is essentially gone, on a hospital unit we must wake when we are told, wear what we are told and eat what we are told. Often, we don’t have the luxury of a private room, we must share a room with whomever, they say we have to. 

In his classic New York Times bestseller Being Mortal: Medicine and What Matters in the End, Atul Gawande examines identity and how it’s often diminished for residents of hospitals and nursing homes. The author, a medical doctor, uses case studies and also discusses the reality of chronic illness and ageing within his own family. Gawande writes that the battle of being mortal is the battle to maintain the integrity of one’s own life—to avoid being so diminished or dispirited or subjugated that who you are becomes disconnected from who you were or what you want to be. 

Similarly, Bonnie Annis, a breast cancer survivor and contributor to Cure magazine, recently wrote about the identity trap that we find ourselves in. “Just because a disease comes knocking on the door, does a life necessarily become drastically changed? Sometimes, perhaps, but not always,” she insists. “Taking time to hold tightly to identity can actually help with the ability to get through cancer. For example, if a person fails to remember how resilient she was before cancer, she may find herself struggling to keep her head above water when things get tough.”

Annis concludes that none of us escape cancer unscathed. It’s a life-changing and life-altering disease, but allowing it to become our identity is not an option. We’re all too precious and too different to live within the confines of the world of cancer. We can’t afford to give it the power to rob us of our identities.

What Cancer Patients Most Need to Hear

Looking back on my almost decade long journey as a cancer patient, I’ve come to recognize that there are certain validations and reassurances that I wish to receive. I’ve also discovered that there are some fundamental psychological and emotional needs that are common in people who are living with cancer. Here is a list of what I believe we long for from our friends, family and those closest to us 

We need you to reassure us that our cancer isn’t our fault.

It’s been well documented that many cancer survivors have feelings of shame or guilt, particularly around the notion that they may have played some part in causing their cancer. Moreover, people often subtly, or not so subtly, blame us for our disease. Friends, family members or strangers often do this unwittingly, in an attempt to rationalize a painful reality and to cope with it better themselves. 

There is a difference between taking responsibility for the consequences of our actions and feeling like we deserve to be blamed. It may be true in some cases that a patient’s lifestyle or health care choices increase the odds of getting cancer or contribute to cancer progression. No doubt in such circumstances changing certain behaviours may improve their health. However, allowing a cancer patient to absorb blame and feel shame will almost certainly make matters worse. Instead, it’s better if we do not let shame and guilt keep us from moving forward. Feelings of guilt should never stop a cancer patient form getting the support they need and deserve, or from living in a healthier way. 

One cancer survivor said in a Globe and Mail newspaper interview that he thought healthy people should never give cancer patients health advice. “There’s nothing worse than being sick and getting advice from the healthy, because it’s almost like insinuating you did something to make this happen to you,” he explained. I firmly agree with this statement, and I become extremely angry when someone who has never experienced cancer tells me how to live my life with the disease. I’ve decided shame and guilt are unnecessary burdens to carry. Indeed, from everything that’s known about the emotions and health, acceptance and forgiveness are what we need to cultivate and enhance healing, not self-condemnation and self-blame.

We need you to validate our emotions, especially the unpleasant ones.

In took a cancer diagnosis for me to finally realize how essential validation is for a person’s mental health, especially their self-esteem. To validate someone is to recognize or affirm their validity or worth or the worth of their feeling or opinions. To validate someone often means using both your words and actions to make them feel valued or worthwhile. 

You might want to begin by acknowledging that cancer can be a terrifying experience and a diagnosis of this disease is usually a turning point that will alter a person’s life forever. I hate when people try to deny this fact or minimize it by giving me false reassurance. The truth is I don’t know if I’m going to be fine, you don’t know I’m if going to be fine, even my oncologist doesn’t know for certain if I’m going to be fine. Instead, I feel comforted when people use phrases like “I believe in you.” or “I’m pulling for you.”

We need you to be specific when you offer us assistance. 

“Can I do anything to help you?” Your overall intentions for asking a cancer patient this question is likely noble and your heart is in the right place. However, the phrasing of this question is frequently too vague or broad. The person undergoing cancer treatment is probably too overwhelmed to think of something specific, furthermore they don’t want to feel like a burden. Instead, it’s recommended that you ask if you can perform some task in particular for the person. “May I pick up some groceries for you?” or “I’d like to make you dinner tomorrow night.” are good examples of things you might want to say. Even scheduling routine appointments is difficult for an individual facing surgery or chemotherapy, so it might also be fitting to take the initiative. Many of us facing cancer treatment would be delighted if you offered to make some telephone calls or send some e-mail messages.

We need you to acknowledge our losses. 

Sometimes I view my cancer diagnosis as a series of losses, for example I’ve been forced to abandon or reassess many of my long-term professional goals. I lost numerous clients when I was unable to work for approximately a year. By the time I had undergone several major surgeries and then struggled through chemotherapy treatment, I had realized how stressful, competitive and deadline oriented my field of freelance journalism can be. I had to make the decision to step back from the relentless demands of trying to do assignments all the time.

Allow us to cry, to feel numb, to be angry, or to feel however we’re feeling. These emotions hurt, but they are natural and normal. Grief is a person’s normal, healthy response to a loss. I’ve discovered firsthand that the loss that triggers grief isn’t always something physical. You can experience grief if you or a loved one are diagnosed with a major disease or face a serious illness. It’s common to grieve the future plans you had made, or the ways life will change. Remember there is no “right” way to grieve, everyone is different. Give us time to experience our loss in our own way. 

Cancer Patients: Tackling the Privacy Dilemma

As a patient I know that there are laws in place to protect my medical records and the confidential nature of my consultations with my doctor. However, there is much less to protect my privacy in other situations. For example, if information I may not want to become public knowledge comes to be revealed through other individuals who are not part of my medical team. When undergoing cancer treatment, it’s usually necessary for us to share sensitive or highly personal medical information with members of our family, we also may need to share news with our social network or work colleagues. 

I realize now, nine years after my cancer diagnosis, that it was truly up to me what I wanted to say about my medical condition, what I wanted other people to know and when. There have certainly been times when I should have been more careful with what I revealed or chosen more carefully who I confided in. Much to my chagrin, one matter of etiquette that was breached during my diagnosis and treatment was respect for my privacy as a cancer patient. Of course, I won’t name people specifically, but there were a couple of family acquaintances who took it upon themselves to spread the news of my illness. Please don’t share cancer information unless you know you have permission from the individual. Don’t use telephone calls, emails, social media, newsletters or bulletins to comment about a person without their specific consent. This rule is especially important when it comes to something as intensely personal as one’s health or a cancer diagnosis.

Regrettably, I’ve learned that our society still has misperceptions about chronic illnesses, such as cancer, and that there is still indignity for those of us living with such conditions. This legacy isn’t surprising considering the profound fear, confusion and stigma surrounding cancer for centuries. Until relatively recently the word was hardly spoken in public or said out loud. In 1978 Susan Sontag wrote the classic, and still controversial work, Illness as Metaphor. A breast cancer patient herself when she was authoring the book, Sontag argues that the metaphors and myths surrounding certain illnesses add greatly to the suffering of patients and frequently inhibit them from seeking proper treatment. By demystifying the fantasies surrounding cancer, Sontag strives to show cancer for what it is—just a disease. Cancer, she argues, is not a curse, not a punishment, certainly not an embarrassment, and it is often highly curable if appropriate treatment is followed.

It’s no wonder that some cancer patients still choose to avoid revealing their illness to others. Some don’t want to be viewed differently. They just want to be normal, not defined by the disease. Others may choose to stay silent to protect their privacy and emotional stability. When the news broke that musical legend David Bowie had died at the age of 69 after an 18-month battle with cancer, fans around the world expressed not just grief but shock. Despite decades on the world stage, under the glare of a public spotlight, the rock-and-roll icon managed to keep his cancer journey a secret from fans and friends alike, sharing his medical condition only with a handful of people in his inner circle.

It’s one thing to grieve a long life lived and a promise fulfilled. It is quite another to be shaken by a life cut short. Recently many of us were shocked once again by the news that Hollywood actor Chadwick Boseman had died at the age of 43 from colon cancer. Boseman was diagnosed with stage III colon cancer in 2016, and battled with it these last 4 years as it progressed to stage IV. He never spoke publicly about his cancer diagnosis, and according to The Hollywood Reporter, “Only a handful of non-family members knew that Boseman was sick… with varying degrees of knowledge about the severity of his condition.” During treatment, involving multiple surgeries and chemotherapy, he continued to work and completed production for several films, Boseman died at his home as a result of complications related to colon cancer on August 28, 2020, with his wife and family by his side. Before his death, he was able to choose how much of his cancer journey he wanted to share, when and with who.

The Things That Are Not Okay

DOCTOR:  I am sorry this is the news I have to be telling you. 

ME:  It’s okay.

DOCTOR:  No, it’s not okay. Nothing about this conversation is okay. 

…in that sacred moment, this doctor gave me permission to be honest. That’s how I’ve been comfortable being so open about grief.

— Shannon Dingle


When you’re diagnosed with cancer there is sometimes a tendency to try to remain strong and stoic and to not complain or “burden” others with your illness. I think this predisposition might be more deep-seated in women because of the way we are socialized. Many of us will reply that things are okay or attempt to act like everything is alright in situations that are completely unacceptable. I’ve made a list of some unacceptable situations that are, in my opinion, not okay and they should not be painfully tolerated by people living with cancer or any other serious illness. I’ve made it my mission to call attention to these injustices—I try to call them out whenever possible. 

Spouses or Family Members Who Do Not Offer Support 

As an ovarian cancer survivor, I understand that women living with this ruthless disease need love and support and we deserve to be treated with empathy and compassion. We shouldn’t have to endure abusive or toxic relationships, especially when it involves a spouse, caregiver or other family member. Unfortunately, I’ve heard of women whose husbands or partners don’t support them emotionally through their cancer journey. Some spouses complain when a woman’s cancer treatment interferes with family holidays or social activities. A few will even have the audacity to grumble if their sick partner is unable to perform her regular domestic work or maintain certain household responsibilities. 

Medical Professionals Who Lack Compassion or Empathy

To me the best doctors take time to connect with their patients, and they genuinely care what we are thinking and feeling. During my hospitalizations, I was so often ignored or regarded as an insignificant number that the occasions when I was treated with dignity or compassion are especially memorable to me.  I will always retain one particular memory from during my months of rigorous cancer treatment.

It was in the middle of the night and I had already spent several grueling hours in the emergency room when I was finally sent to diagnostic imaging for a CT scan. The technician performing the scan was highly empathetic toward me. He immediately noticed that I appeared cold and nauseous, so he offered me a blanket as well as a small basin just in case I was sick. Next, he saw that my IV had been inserted poorly by someone in the ER and that it required redoing. However, instead of changing my IV before the scan, he explained that he didn’t want to put me through the unpleasant procedure right away. We ultimately used the imperfect IV line to administer the contrast solution for the scan and it held out until we were finished.

A Culture of Guilt or Shame Surrounding Cancer

I’m still inspired by the words of the late American sportscaster Stuart Scott. “When you die, it does not mean that you lose to cancer,” he said. “You beat cancer by how you live, why you live, and in the manner in which you live,” There’s a controversial, yet commonly held, view that a cancer diagnosis is a war or a battle that must be won. The problem with this philosophy is that it places 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 just weren’t strong enough to will it away.

Many healthy people think that if they are diagnosed with cancer they will be treated quickly and then all they’ll need to survive is a positive attitude and a fighting spirit. They are wrong. In my opinion, a person’s cancer outcome will depend almost exclusively on medical science. If someone’s cancer progresses, it’s a failure of the medical treatments that are currently available to them, plain and simple. I know plenty of women who’ve succumbed to ovarian cancer and they were among the bravest and most resolute people on Earth. Ultimately, they are no less survivors than those of us who are lucky enough to be “cured” or to enjoy decades of remission.

A Lack of Progress in the Treatment of Ovarian Cancer

According to the Canadian Cancer Society an estimated 3,000 Canadian women will be diagnosed with ovarian cancer in 2019. An estimated 1,900 will die from the disease. Mortality rates for ovarian cancer have declined only slightly in the forty years since the “War on Cancer” was declared. In Canada, the five-year net survival for ovarian cancer is approximately 44 per cent. This means that, on average, only about 44 per cent of women diagnosed with ovarian cancer will survive for at least 5 years.

The survival rate remains dismal compared with most other types of cancer, this is essentially because the majority of women aren’t diagnosed until the disease is advanced and has spread beyond their reproductive organs. There is no reliable screening test for ovarian cancer and the early symptoms are often quite vague. For years, women and families affected by ovarian cancer have advocated for greater government funding of research into this disease. The indisputable fact remains that knowledge about ovarian cancer is still not as developed as it is for many other cancers.

Doing Cancer My Own Way

I care for myself. The more solitary, the more friendless, the more unsustained I am, the more I will respect myself.”

— Charlotte Brontë, Jane Eyre

One thing that’s become evident to me as a cancer survivor is that we all respond to cancer differently. Our response depends primarily on our own personality and past life experiences. How we deal with a life-threatening illness will differ according to our personal values and may also be connected to how we have responded to crises in the past. It’s also important to note that we each have our own toolbox of resiliency to work with. Cancer is extremely personal, so our response tends to be personal too. This has definitely been my experience as an ovarian cancer survivor. I’ve learned a great deal about who I truly am as a result of my emotional and psychological reactions to having gynecological cancer. It’s been a gradual process during the course of which I’ve become more nurturing and accepting of myself.

 

OLYMPUS DIGITAL CAMERA

Posing with my mom and brother Ray at the annual Ovarian Cancer Canada Walk of Hope. The nationwide event is held each September.

 

The moment I was diagnosed with cancer I entered a psychological realm where wanting to know everything about the disease alternated with fear and aversion. I realized it was solemn news when a week after my hysterectomy the phone range and my surgeon wanted to see me immediately. As I sat in my gynecologist’s office on that autumn afternoon, he was thoughtful enough to provide me with my own copy of the surgical pathology report, a crucial document outlining the specifics of my uterine and ovarian cancer. He estimated that it would be a couple of weeks before I could have a consultation with a team of oncologists at the Tom Baker Cancer Centre. In the coming days I developed a love-hate relationship with the information that I had been given. Numb and in shock, I read over the three-page report repeatedly, meticulously researching the strange and frightening medical terminology.

Simply explained, every cell in the body has a tightly regulated system that dictates when it needs to grow, mature and eventually die off. Cancer occurs when cells lose this control and divide and proliferate indiscriminately. Theories, treatments and possible explanations for cancer are abundant. They range from the factual or medically proven to the bizarre, absurd and downright dangerous. Regrettably there are a few contemptible individuals who knowingly try to profit from cancer patients or exploit our physical, emotional, and psychological needs. When I access printed materials or the abundance of online resources that are available, I remain highly selective. When I started treatment I immediately came to appreciate that the most specific and reliable information was coming from my oncologist and the incredibly skilled medical professionals on my cancer care team.

 

simulator

 

Above all, as time has passed I’ve come to trust myself, I feel like the foremost expert on my body and the disease that’s invaded it, Decisions concerning my treatment have always been made in conjunction with my oncology team, however most final verdicts rest with me. For example, in the fall of 2012 I made the excruciatingly difficult decision to forego treatment with radiation, opting for observation instead. The risks of pelvic radiation include the possibility of rectal bleeding; even worse, some patients will experience a bowel blockage or a permanent change in bowel or bladder habits after their treatments are finished.

For most cancer patients the benefits of undergoing radiation outweigh these serious risks. But due to my personal medical history it’s almost certain that it would have posed a substantial danger. The radiation oncologist informed me that due to my previous bowel blockage during chemotherapy the possibility of severe complications occurring would be much higher than average. Besides, I was undeniably exhausted from three consecutive abdominal surgeries in addition to five cycles of carboplatin, at the time I felt I could endure little more.

Finally, 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’m not going back to the way I was before I had cancer. I see that as a waste of all that I have been through. As a cancer patient I expect understanding and acceptance from family, friends and health care professionals. I believe that I should be able to express my emotions without being judged by others, so naturally this remained my philosophy when I got cancer. As an introvert I sometimes struggle with fitting in and belonging, so I’ve become involved with supportive organizations such as Ovarian Cancer Canada and Wellspring.

God Bless the Child

When I go to appointments at the cancer centre I notice that I’m surrounded by women in my own fortysomething age range. However, many of them are not patients themselves, they are there as caregivers and are accompanying a cancer stricken elderly parent. Sometimes as I walk in with my support person, my healthy and totally independent 72-year-old mother, I feel bitter and confused at our obvious role reversal. All at once I’m aware of how much the relationships in my life have changed since my diagnosis. Cancer has made me more dependent on family members, a multitude of health care workers and a number of government agencies. Throughout my ordeal there have been lonely days when I’ve yearned for a larger family or an abundance of close friends. Above all having a chronic illness has shown me what it’s truly like to be forced to rely on other individuals and revealed to me who is willing to stand by me in my time of greatest need.

Sometimes music helps me to deal with certain emotions that I’m feeling. Well before I was diagnosed with cancer or felt its harsh social and financial impact, God Bless the Child by the legendary Billie Holiday was one of my favorite songs. But lately both the powerful lyrics and her exquisite delivery keep going through my mind. God Bless the Child extols self-reliance while it condemns those who ignore us, repudiate us or treat us as inferior when we are unable to be self-sufficient. In her autobiography Lady Sings the Blues Holiday indicated an argument with her mother over money led to the song. Apparently during the argument she said the line “God bless the child that’s got his own.” Anger over the incident led her to turn that line into a starting point for a song, which she worked out in conjunction with Arthur Herzog. In his 1990 book Jazz Singing, Will Friedwald describes the work as “sacred and profane” as it references the Bible while indicating that religion seems to have little or no effect in making people treat each other better. Sadly, Billie Holiday was only 44 when she died—she had fought a long, terrible battle with alcohol and drug addiction.

God Bless the Child

Billie Holiday and Arthur Herzog Jr.

Them that’s got shall get
Them that’s not shall lose
So the Bible said and it still is news
Mama may have, Papa may have
But God bless the child that’s got his own
That’s got his own

Yes, the strong gets more
While the weak ones fade
Empty pockets don’t ever make the grade
Mama may have, Papa may have
But God bless the child that’s got his own
That’s got his own

Money, you’ve got lots of friends
Crowding round the door
When you’re gone, spending ends
They don’t come no more
Rich relations give
Crust of bread and such
You can help yourself
But don’t take too much
Mama may have, Papa may have
But God bless the child that’s got his own
That’s got his own

Mama may have, Papa may have
But God bless the child that’s got his own
That’s got his own
He just worry ’bout nothin’
Cause he’s got his own

Image

Billie Holiday