I’m still not sure what’s considered appropriate behavior when dealing with cancer. There’s an unspoken rule when receiving cancer care and that is, kind smiles and casual chit-chat are fine, but save the in depth prying for haircuts and other social events. Conversations are a little sensitive, especially when you don’t know the other person’s prognosis. Chemo stations are not the most private, which is okay because people tend to keep to themselves. However, I had a run in with a stranger a little while back when C was still receiving IV chemo.
C had been whisked away for an x-ray, leaving me to man the fort until his return. Just minutes after C left, a middle-aged man and his mother took the station to the left of me. Almost immediately, he asked how I was doing. Uh, aside from the shooting, Mrs. Lincoln, how’d you like the show? ;) I kid. Though some people bristle at the question, I like it when people check in. So, I answered politely, “well, thanks, and you.” “Doing good. This is mom’s second treatment.” Then the guy looked to the empty chair. I added, “I’m here with my brother. This is his fifth treatment.” The guy asked how he’s doing. Fair question, so I said, he’s handling the symptoms so so, but otherwise hanging in there. I mentioned C’s cancer type and told him that my mom also has cancer. He turned away quickly like he wanted to stop our little brush with casual conversation, and mumbled, “mom’s doing real good, prognosis looks real good.” He seemed uncomfortable, like he didn’t want our little run of bad luck to seep over to his side of the curtain.
A few days later, I had another awkward run-in with a lady on an elevator. The lady noticed I had pushed floor 11, which prompted her to say “you must know someone who has cancer. Is it your husband?” I said, no, my brother. She then asked what he had and how serious. (Alright, miss nosey… ). I told her that he has kidney cancer. She then replied, “wow, that’s supposed to be a bad one.” (You said it, lady. Not quite the vote of confidence I was looking for, but I appreciated the sentiment and the kind look in her eyes).
Cancer can bring about an array of emotions, and subsequently, different reactions. Some are eager to hear the details and to “feel it” with us, while some would rather we carry on as normal. I’m paranoid of popping people’s bubble of bliss, so I trend on the clinical replies, and leave the emotional details for friends and family. It’s such a heavy thing to handle; a person can’t be faulted for not knowing what to do or how to handle it, and thus, disengaging. An acquaintance of Craig’s came up to me back in April and said that he’d been avoiding C because he didn’t know what to say. He added that he just wanted C to return to how he was. I remember thinking, wow, how brave and completely honest. This guy said out loud what I’m sure a lot of people were (have been) thinking. Some would rather avoid the person (Craig) than risk saying the wrong thing.
I can sympathize with that. I often feel tongue-tied with mom and C and I’m in the thick of it. As a family member and caregiver to two survivors, it’s difficult to know what to say and when to say it. Do we initiate a conversation, or allow it to emerge naturally? And by not initiating, are we sending a signal to mom and C that we are unwilling to talk about it? How do you distinguish something comforting from overbearing and intrusive? We’re all scraping to find a new normal in how we interact with each other -- I can’t imagine how our friends, family, and acquaintances must feel. It goes without saying that people living with cancer – and caretakers -- have different wants and needs with regards to comfort. It’s no wonder there’s so much anxiety on knowing what to say. Some people ‘in it’ seldom want to rehash things or think about their cancer. Others would love nothing more to talk about their cancer, to honor the process, and demonstrate that they are still living. Finding the write words for talkers and non-talkers is difficult.
Last week, the NYT ran a piece on cancer metaphors (“When Thumbs Up Is No Comfort”). In it, they describe how metaphors – for instance, battle metaphors where the cancer survivor is depicted as a fighter -- can be motivating for some, but constraining to others.
“Metaphors don’t just describe reality, they create reality… You think you have to fight this war, and people expect you to fight…But many patients must balance arduous, often ineffective therapy with quality-of-life issues. The war metaphor… places them in retreat, or as losing a battle, when, in fact, they may have made peace with their decisions.”
For outsiders, the tendency is to say upbeat and positive things to encourage cancer survivors to keep fighting, and to never give up. Not to let people down, cancer survivors feel the need to display optimism, using positive language to describe how they’re feeling, and how they’re going to “beat this thing.” They, subsequently, avoid talking about the negatives so as to not give off the impression that they aren't handling it well.
The NYT noted that “optimism reassures anxious relatives…regardless of whether it accurately reflects the [person’s] emotional state.” There’s a debate as to whether positive metaphors actually inspire people or reinforce expectations to always “stay positive” and “fight” no matter what. The tendency is to associate positive attitudes with hope and survival. Anything less sends off alarm bells to outsiders that the person is giving up. However, associating attitude with hope and survival can have the effect of sequestering a person’s emotional state, so that people feel like they have to be brave, that they can’t cry, they can’t be angry, and they can’t “fall apart.” Language encouraging people to stay upbeat and positive may, therefore, increase anxiety, and trap survivors in a superhuman state of being, where they can’t express pain, anger, and disappointment for fear of letting others down.
Being outwardly strong and positive can feel like a burden for cancer survivors and caretakers, especially when the journey (another metaphor) itself is dynamic, marked by direction changes, wrong turns, and the proverbial peaks and valleys. It’s comforting to wallow in the trough from time to time. Sometimes, it doesn’t feel like everything will be okay, and to honor that makes it seem more real. It gives the whole process credit -- it is, after all, cancer. It’s nice to let out a little emotion -- when there’s the freedom to do so -- as an honest reflection of a temporary state. But crying and anger goes against typical images of bravery and courage. And no one wants to feel like they are giving off the impression that they aren’t handling it well. Picking up on the intensity of the staying positive mantra, survivors may relate they’re emotional state with their chance of survival, implicitly feeling that emotional instability may negatively affect their outcome. Hence, the trend toward platitudes and avoidance of any real discussion on how that person actually is. Stoicism is often rewarded with praise like “you’re handling it so well.” (I often wonder if praise is less an expression of encouragement than a “whew, thank you for not making this hard on me...I wouldn’t know what to do if you were breaking down.”)
Yet, for some survivors, it’s helpful to remain positive and receive encouragement, especially when making tough medical decisions in the face of bleak prognoses. Stephen Jay Gould survived abdominal mesothelioma largely because of “attitude” where “beating” his cancer became his life’s mission. Trying to defy the odds provided the energy to research and pursue all possible treatment options.
Is there a right or wrong thing to say? For me, silence is worse than an ill-timed metaphor. Checking in with words of comfort – no matter how trite – is far better than disengaging for fear of saying the wrong thing. Moods change so quickly that it’s hard to know what to say and to whom. One day, a “hang in there” may be appropriate, and on another, it may be the most condescending thing one has ever heard (by the way, I actually like the phrase). My family has a motto which emerged during my Grandpa’s journey with cancer, and that is to “Fight Fiercely.” This motto has unified our family, and allows us to feel connected with each other – even Grandpa – during this tough time. We wear it on a necklace over our hearts, and say it during particularly tough times. “Fight fiercely” is perhaps what Gould referred to as attitude. But I know others, particularly those ignorant of the history behind it, may cringe at such a thing. A person can’t be faulted for clinging on to metaphors in such crazy times. Nor can they be faulted for trying to offer comfort in some small way. To complain about such things seems to be a luxury of those who actually have a support network. The opposite – the silence of aloneness – can be even more devastating. When it’s all over, what truly matters? That someone said something that temporarily rubbed someone the wrong way, or that a person stood by in support – metaphors and all? I think the latter. But I also understand if a person living with cancer feels a tad stifled by phrases like “you just have to be strong” and “if anyone can beat this, it’s you.”
Being of two minds about it, I asked Craig what he thought about cancer metaphors. He said he doesn’t feel particularly brave or courageous, but doesn’t particularly mind them either. He doesn’t consider his journey with cancer to be a “fight," however. (I’m not sure how he’d characterize having cancer, or if he even would.) He didn’t anticipate cancer, but he’s getting on with it just like most people would.
I tend to agree with his take on bravery. If living with cancer is brave, than I suppose C is, but I have yet to meet a person with cancer who, given that criteria, wasn’t brave. There’s no right way to handle the big C, or one script. People use multiple and ongoing narratives to describe the process, their grief, and how they’re coping. With cancer, it’s okay to be all over the place, and to answer “how are you doings?” with an “awww, hmmm, well…”
With all this said, I suppose just as a cancer survivor should be allowed to “just be,” perhaps friends and loved ones should also be given some latitude. We’re all learning. And if language becomes too irksome, well, there's no time like the present for a little rephrasing. … -- J
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