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.

 

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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

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Billie Holiday