“Dear every cancer patient I ever took care of, I’m sorry. I didn’t get it.”

On her blog, oncology nurse Lindsay Norris penned an open letter to all patients that had been under her care, two months after she was diagnosed with stage III colorectal adenocarcinoma.

“I didn’t get what it felt like to actually hear the words,” admitted the 33-year-old from Kansas.

“How are you?” – a dreaded question

Cancer is a disease that brings about worry and fear in patients, and though family, friends and even health professionals try to be caring and helpful, the situation is often hard to comprehend.

“I didn’t get how hard the waiting is… I didn’t get how much you googled. I told you not to do it… I didn’t get how confusing “options” really were,” said Noris in her letter as she explained her realisation of the range of emotions her patients felt.

There is often a lack of knowledge on how to show concern for patients with cancer, and well-meaning comments can end up becoming inappropriate and hurtful.

“How are you?” is the most commonly asked question, but also the query Dr Wendy Harpham, who has had recurring cancer, dreaded the most.

“I found myself consoling those who asked and then fighting the contagion of grief and fear,” she said. “Even when the news was good, I didn’t have the energy to include all the people who wanted updates.”

According to Dr. Stan Goldberg, a professor emeritus of communicative disorders at San Francisco State University, cancer patients often encounter ‘cheerleaders’ who shower them with optimistic platitudes like “We’ll battle this together,” and “They’ll find a cure.”

“Words of optimism may work in the short run, but in the long run they can induce guilt if the cancer is more virulent and defeats a person’s best effort,” explained Goldberg.

”Often the greatest support comes from silently witnessing what a person with cancer is experiencing,” he added.

“Sometimes only a calm presence and compassionate listening are necessary. Silence becomes the breathing space in which people living with cancer can begin difficult conversations.”

The blame game leads to guilt

“I didn’t get the guilt you felt,” Noris also confessed.

Cancer patients are exposed to a range of social assumptions people have about the disease, particularly in instances of “lifestyle cancers”, which may lead to feelings of shame and guilt.

Lung cancer, of which 80% of cases are attributed to smoking, is surrounded by stigma attached to “bad behaviours”.

“You’re suddenly this person who deserves to die because you smoked,” wrote a participant from a recent study involving 81 female cancer patients.

“She [doctor] turned around and she goes, ‘You did have symptoms and you didn’t come for a pap smear for a long time, what do you expect?’” said another.

Such a climate causes people to overlook the fact that not all cancers are preventable – one in two men and one in three women will develop cancer in their lifetime, often in spite of their life choices. Yet, most of the public support and attention is directed to patients with less blameworthy illnesses.

The unequal levels of compassion undermine the need to provide care and support to patients, but one does not have to “know how you feel” in order to be supportive or offer help.

Interaction with a cancer patient can be overwhelming, but saying “I don’t know what to say” is probably better than to say nothing at all, or to offer words that can make the patient feel abandoned. MIMS

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