The First Rule of Cancer Club

Trigger Warning/Content Warning: cancer, death, recurrence

The first rule of Cancer Club is you DO NOT talk about Recurrence. The second rule of Cancer Club is you DO NOT talk about Hospice!

One of the most delightful characteristics of youth—that you are indestructible (until you’re not)—is one of its greatest risk factors, as well. Cancer is the largest disease killer of adults under forty. […] The numbers are far from insignificant, especially given the social costs of the number of years of life (read, productivity) lost. Yet until about five years ago, virtually no oncological attention was given to this demographic” (1).

AYAs experience a lot of shared grief— grief over physical losses, over mental health challenges, and over missed life experiences. However, one thing we don’t share is our eventual outcome. Our five-year survival rates vary drastically from children and adults with similar diagnoses; between AYAs that differ by race and ethnicity, neighborhood poverty, urban or rural residence, and insurance type; and in the average number of patients enrolled in clinical trials for better survivorship (2). These factors ultimately lead to some of us living long enough to witness our friends and community members endure the trauma of deadly recurrences, time and time again.

Acknowledging and addressing this has anecdotally proven to be an incredibly uncomfortable topic, and I want to posit that our discomfort largely stems from devastating, internalized survivor’s guilt, in which neither person in the relationship wants to burden the other. As medical treatments progress, with more of us living longer, long-term grief survival as an AYA is a topic we must come to terms with. How do we transition the uneasiness of survivor’s guilt into compassionate dialogues about long-term survivorship grief?

I’m now over eight years into my own diagnosis—one that is more obfuscated by the lack of data for my age group and tumor type as an AYA diagnosed with a low-grade diffuse tectal astrocytoma (3, 4). And I have lost at least nine AYA friends by now—humans with whom I shared diagnoses, anxieties, life-plans, enthusiasm, food exchanges, inexplicable friendships, and moments that can’t be transcribed.

Pictures I have taken with my various cancer groups feature the smiling faces of fewer and fewer people who are still alive today in a way that feels dark, vacuous, and impenetrable. The AYA bond can be so strong and open, but I feel like nobody knows how to address the seismic shift that happens when one of us has a recurrence. I want us to be able to have these conversations, not just for those who experience a recurrence (so that they’re not made to feel like abandoned pariahs), but also to protect against burnout for cancer survivor advocates’ mental health.

Recurrence is terrifying; it’s a major cause of cancer anxiety for most AYAs I know (5). And as an AYA working in cancer advocacy, something new and bottomless creeps through me whenever another AYA has a recurrence. Cancer is not contagious, of course. But when a peer has a recurrence, it almost feels like a new, deeper inception of Susan Sontag’s “illness is the night-side of life, a more onerous citizenship” (6). At some point, after several years of living with an illness that the layperson equates with death, you can almost trick yourself into believing you’re in the clear. But the more people I know who die, the closer it feels to me. When you already reside in the night-side of life, what happens when you shift from living with illness to potentially dying of illness?

I don’t know how to process these aggressively strong, long-distance relationships that get destroyed by a single fucking Facebook post when I randomly check my phone one day after work. I sit down and open the app; I scroll and a post by someone I’m not friends with has tagged a post with an AYA friend. My heart sinks as I frantically read past the first few words that confirm my worst suspicion. Suddenly, I’m shattered into a void, a vacuumed-out gnawing, cement heavy emptiness that erases all human thirst and hunger in knowing that person is gone.

I think that’s when I feel the most desperate and out of control—when a fellow AYA gets a recurrence or dies. It doesn’t matter what they do or what I do; whether we do or don’t eat sugar, drink alcohol, or have coffee enemas, etc. If you’re an AYA, you know that some people will experience a recurrence and die no matter what actions they take—it’s going to happen, and it’s going to keep happening, and I could be next. This is always followed with a chaser of guilt that I have centered myself in another’s death. And for those not on social media, I’m scared to send a message inquiring about them because I don’t want to know that they’re not here anymore. Even for me, someone who claims to want all the available information, sometimes I must admit, ignorance is bliss.

I haven’t asked any of my friends who have recurred, or the ones that died before they had the “chance” to, how they felt toward our cancer community once they had that scarlet ‘R’ on their chest. We have all talked about it in the abstract at some point, either in a support group or at a cancer event. We know the gut punch it must be, but it’s always felt cruel to me, perhaps too close to trauma porn, to ask these people to flay themselves open once again simply for the information. Maybe no one who recurs wants to talk about it—maybe that’s not for us (me) to be a part of until we literally are. But maybe the alternative is also true—that people who have experienced a recurrence may want to be able to talk about what it’s like, but fear others in the AYA community won’t want to hear about it because it’s too traumatic for them.

That’s, in part, where the internalized survivor’s guilt comes in. I have sat in support groups when I have just lost a friend, but a newly diagnosed person is there, and I don’t want to scare them. I have sat in support groups where I have had something good happen in my life, but a friend received bad news on their latest scan and neither of us wants to take attention away from the other person. How do you talk about small wins in everyday life when someone just got negative results?

Grief looks different when you have shared in someone’s experience and when they have shared in yours as well. You know deep in your cancerous soul that they don’t want pity, because they haven’t asked for it and because you wouldn’t want pity either. You desperately wrack your brain for why. Why me? And then, why not me? How can I have had such bad luck and then such good luck?

I do wish at the very least we could talk more openly about death, because frankly, I’m OK with the discomfort. (Though perhaps that sentiment is the result of privilege, of the comfort provided by a years’ stable tumor?) Of course, I’m not trying to suggest it’s the AYA’s fault for avoiding conversations about death because those of us in the U.S. typically can’t even be honest with ourselves about the inevitability of dying, even at the language level. We don’t say someone “died,” instead we say the person “passed away,” “moved on,” or, my least favorite, we use some sort of toxic war metaphor, like “oh, she lost her battle to cancer.” But I feel OK with my body going back to the earth, home to a different mother. Don’t worry, I’m not about to drift into some “appropriative White wellness cult” bullshit, but I do believe there are better, warmer sources we can turn to learn about grief and death. Our puritanical Western culture does a piss-poor job of encouraging alternative thinking about death. Offered to us is either the gruesome physicality of cold morgues and mutilated bodies, or alternatively Christian naïveté of “it’s fine, that person is in Heaven with Jesus now,” which can feel equally alienating if that is not your belief and your anger and grief is dismissed. There is a reason many cancer patients turn to Zen Buddhism with transitional, rather than terminal philosophies around death.

Cancer patients deal with grief constantly. Notably, those of us who get diagnosed young must learn how to cope with this, especially those who decide to remain in fields related to cancer. That is what I have chosen/been forced to do (as an autistic person, I find I cannot do things in halves or as a passing interest). I will never be able to abandon this illness. It has become my identity (with a conscious decision to use that term in the IFL vs. PFL debate), my hyperfixation, my special interest. Or as Anatole Broyard wrote: “it was not a choice but an automatic shifting of gears, a tacit agreement between my body and my brain” (7).

I know that I will be working in cancer advocacy in some way for the rest of my life, and I know with that decision will come the innumerable deaths of my friends, peers, acquaintances, and fellow patients. That’s where I need help. I feel so indebted to the time I live in, to the medical advances that have proliferated in the last several decades, to everyone who had their cells turn on them before me so that we may now have better opportunities for survival. We need to be able to have these conversations about survivor’s guilt, burnout, recurrence, and death, for ourselves, our fellow AYA survivors, the AYAs that came before us, and for those of us who work in the cancer community, however that’s defined. For those of us who want to stay in that community, who choose to stay, who need to stay—how do we cope better? How do we grieve each death as uniquely individual without falling prey to apathy or falling victim to our fears? How do we transition this awkward, uncomfortable survivorship grief into compassionate long-term survivorship grief?

“The only answer to death is the heat and confusion of living” (8). I don’t have any easy answers to this particular survivorship challenge, but I hope that writing about it acts as a first step to bringing these questions and challenges out into the open. And as American artist Avram Finkelstein and his fellow AIDS activists once proclaimed, Silence = Death.

This article was featured in the March 2023 Unseen Challenges of Survivorship issue of Elephants and Tea Magazine! Click here to read our magazine issues.

SOURCES

1. Anatole Broyard, Intoxicat-ed by My Illness and Other Writings on Life and Death (Fawcett Books, p. 3, 1992).
2. Jo Cavallo, “Overcoming the Disparities in Cancer Survival Among AYA Minority Patients: A Conversation with Michael E. Roth, MD,” The ASCO Post, (September 25, 2021). https://ascopost.com/issues/september-25-2021/overcoming-the-disparities-in-cancer-survival-among-aya-minority-patients/. [Accessed December 27, 2022.]
3. Girardi, F., MD, Allemani, C., PhD, & Coleman, M. P., FFPH, “Global Trends in Survival from Astrocytic Tumors in Adolescents and Young Adults: A Systematic Review,” NCBI. https://doi.org/10.1093/jncics/pkaa049 [Accessed January 5, 2023.]
4. S. Lochlann Jain, Malignant: How Cancer Becomes Us, (University of California Press, p. 49, 2013).
5. Audre Lorde, The Cancer Journals, (Aunt Lute Books, p. 47, 2006.)
6. Ostrom, Q. T., Kruchko, C., & Barnholtz-Sloan, J. S., “Pilocytic Astrocytomas: Where Do They Belong in Cancer Reporting?”, NCBI (2019). https://doi.org/10.1093/neuonc/noz202 [Accessed January 5, 2023.]
7. Richter, D., Clever, K., Mehnert-Theuerkauf, A., & Schönfelder, A., “Fear of Recurrence in Young Adult Cancer Patients—A Network Analysis,” NCBI (2022). https://doi.org/10.3390/cancers14092092. [Accessed January 5, 2023.]
8. Susan Sontag, Illness as Metaphor and AIDS and Its Metaphors, (Picador, p. 3, 2001.)