A Reality Check About Life With Cancer

I was exiting the checkout line with my bagged food items at a grocery store when I unexpectedly ran into Janice (not her real name). Janice was someone my wife Shelley and I knew and associated with when our kids attended the same high school and were in similar activities. But we hadn’t seen her in the several years since our youngest had graduated.

I remembered Janice as a kind and warm individual, and she seemed delighted to see me. But this was one of our bad days when Shelley had to stay home — when cancer and its treatment decided to make her feel physically drained and me unabashedly concerned. While of course, I was momentarily happy to see Janice, I wasn’t in much of a talking mood. Under the circumstances, all I wanted was to exchange a few obligatory pleasantries and then get home with my groceries to resume caring for Shelley.

But Janice had other ideas and seemed rather intent on catching up.

She smiled and asked, energetically, “Are you still teaching? How is Shelley doing? Is she still working at the bank?” Evidently, Janice had no knowledge of Shelley’s breast cancer diagnosis. And since I was feeling a bit “cancered out” at the moment, I didn’t really want to open the door for that topic. I was politely trying to abbreviate the conversation, but she persisted with questions.

And then it happened. I inadvertently let the cancer news slip out before I realized what I had done. Our talk would now be extended, as Janice understandably wanted to know some of the details.

“Oh no!” she exclaimed. “How’s she doing?”

I looked down and quietly said, “I don’t know. We’ve had some victories and setbacks, and today… well, today hasn’t been a very good day.”

“But she’s gonna be OK, right?”

“Again, I don’t know,” I answered.

Apparently, this was not what Janice had hoped to hear, so she pressed for more information.

“What do you mean, you ‘don’t know’?”

“Well, just that,” I said, in a somewhat somber voice. “She’s had a lot of chemotherapy and a couple of surgeries, and we just started radiation. And since the chemo didn’t get all the cancer in the first place, she’ll need to have even more of it after radiation is done.”

Janice wasn’t having any of what she thought was my negativity. “Keith, you and Shelley just have to stay positive,” she insisted. “Cancer treatment has come a long way, and I’m sure she’s gonna be just fine. But whatever you do, you have to stay positive.”

Of course I know she was doing what she could to make me feel “better,” but that wasn’t going to happen. After all, this is life-threatening cancer we’re talking about, not a bad cold. So I was rather surprised by the intensity of Janice’s pushback.

“Well, I’m not trying to argue with you,” I mildly chuckled, with a bit of frustration beginning to emerge in my tone. “But whether that’s in fact true remains to be seen. Obviously, we hope she beats this. But right now we just don’t know.”

Seemingly unsatisfied with my response, Janice dug in her heels.

“Keith, that kind of negative talk won’t help anything,” she stated, and with an abundance of conviction. “You and Shelley both need a better attitude, and you need to go home right now and tell her that!” I was even more astounded when I noticed she was emphatically shaking her index finger at me as she continued her lecture about positivity: “You need to tell her that my best friend with cancer had a positive attitude, and that’s why she’s alive today! But whatever you do, you can’t just give up!”

As Janice went on about attitude, I wearily stared into blank space. All I could think of was the gut-wrenching fallout from Shelley’s treatments over the past six months.

The vomiting. Gawd, the violent vomiting. The emotional impact she felt from her hair loss. The ashen color of her face. The hours-long naps she was forced to take since her energy level was depleted. The physical pain from her surgeries and radiation. All the sleep I’ve lost in burning the candle at both ends while trying to manage clashing professional and caregiving responsibilities. And the resulting toll everything took on my own physical and emotional health, as well.

In general, I suspect many of us in the cancer community are pretty open about divulging details when treatment updates are solicited. There’s genuine caring behind inquiries about how we’re doing. And it truly warms my heart that friends enjoy sharing in our delight when Shelley is feeling well or if we’re making definitive progress toward remission.

If there’s really nothing positive to convey, I’ll usually just disclose the raw truth about what is happening. I think it would be disingenuous for me to sugarcoat anything. But I’m also not going to waste any effort debating someone over whether we’re justified in feeling down. If Shelley’s side effects are overwhelming or we’re just tired of everything, our emotions could be wobbly that day. And we may not be all that successful in holding in our, perhaps, temporary apprehensions and disappointments.

But, frankly, why should we need to in the first place?

Just as we would expect in response to our sharing good news, any expression of those difficult feelings should be equally honored and respected – and not quashed with “You need to be more positive” replies. So if you do ask, you have to be prepared for the possibility that things aren’t going so well. And more importantly, you should know that if we respond by describing the intense difficulties of treatment, we’re not exhibiting a bad attitude that needs to be “corrected.” We’re being realistic. We’re being reflective. We’re being honest with you. And it most certainly doesn’t mean we’re giving up.

I was completely taken aback by everything Janice was saying. How in the bloody hell, I thought, are we supposed to have a jolly attitude about our nightmarish realities? And now she’s essentially telling me the reason Shelley is having a tough time is that we’re not thinking about her cancer the right way? Admittedly, I felt a strong desire to turn around and leave right then. But I had a sudden change of heart.

“Oh, hell no,” I thought. She doesn’t get to do that. She doesn’t get to swoop in and judge us insensitively for doing our very best throughout this terrible ordeal. And it finally dawned on me that sometimes even well-meaning people need to be directly apprised of when their semantics cross the line into insensitivity. Janice, it seemed, needed a crash course on how (not) to address members of a cancer community.

First of all, the bandwagon idea that optimism will somehow kill cancer cells, eradicate tumors, and improve a patient’s survival chances is a fallacy. Please reread the previous sentence. Even the American Cancer Society says that, while it can aid in day-to-day mental quality of life, attitude has no physical effect on cancer survival outcomes. I decided to make that point, then and there. And for the record, I was pretty calm, if not serene.

“Janice, cancer isn’t a psychological condition,” I said. “If patients could actually think themselves into remission, don’t you think cancer deaths would be pretty much nonexistent?” She was stunned into silence, and I continued on. So to be certain, I told her, her friend wouldn’t have survived with positive thoughts as the only thing going in her favor. She survived for one reason: Her oncological treatment — treatment that works for some patients, but not always others, regardless of their attitude — thankfully happened to work for her.

And second, I explained to Janice the emotional consequence of shaming a patient or spousal caregiver for not having a more cheerful outlook when they’re going through an extremely tough time, that it can negatively affect their ability to cope by causing guilt and withdrawal. An important stress-release strategy may be as simple as our friends granting us the space to talk — or even vent — about our cancer misfortunes as opposed to pressuring us into internalizing them. If I take the time to tell people how difficult things are, it’s because I trust them to listen; I trust them with the truth. But, to be sure, I told her, I’m not looking to be shut down by a dismissive pep talk when I need to unload some of that emotional burden. “What you said to me a minute ago,” I gently concluded, “I hope you’ll never say to anyone else dealing with cancer.”

There was a surreal moment of silence, as Janice was left speechless for several seconds. She looked away and was wide-eyed with her mouth hanging open. I must confess that my own pushback felt good. In fact, it felt empowering.

Janice finally got it, and she seemed truly mortified by what I told her. A couple of tears bubbled up in her eyes. Her voice wavered a bit when she apologized and said she was just trying to make things better. “But now I realize I only made them worse,” she acknowledged, introspectively.

I put my arm around her and gently told her, “I know you meant well. But please understand that when we talk about how difficult things are, we’re not being negative. We’re simply trying to cope. Just give us that opportunity, and you’ll help more than you can ever know.”

Sadly, Janice’s pressure for an improved mindset is a common theme used with cancer families who may be desperately struggling to navigate the storm of their own medical crises. I’m always unclear why some acquaintances, who have little concept of the abject hell we’re enduring, take it upon themselves to tell us how we should be feeling or reacting to our cancer journey. And it seems to occur in almost epidemic proportions.

Therefore, I’m beginning to think that maybe we in the cancer community should start doing something about it. Maybe we have an obligation to tell them, when they’re sounding a little dismissive to us, to please stop the artificial positivity talk. Maybe we need to be vigilant and alert them when they encroach on a boundary that shouldn’t be trespassed. And maybe we need to do so, if for no other purpose, so they won’t say similarly awkward things in the future to other people who also are struggling with the grip of cancer’s grief and terror. It seems to me that someone has to tell them to stop. If not us, then who?

If we’re outwardly glum on a particular day because of cancer, please don’t scold us about what you may perceive as a poor attitude. It doesn’t help. It doesn’t acknowledge the true suffering we are experiencing. Most of us in the cancer world likely find such an admonition to be naively unrealistic. But by listening instead and allowing us the opportunity to cathartically unload a bit, you just might be able to help us as we struggle to get through another difficult day.

And I’m confident that Janice now knows this, too.