Janis Chen is living with cancer of the lungs at stage four, with metastasis. While she knows a cure isn’t possible, her life isn’t nearing its end. she exists in a state of suspension between living and dying, where survival dictates the rhythm of each day. For Chen, breathing – an action many take for granted – “is a limited resource that I must spend with the prudence of a miser,” especially because “when you heal, the world rejoices; when you die, people mourn. But when you are simply in a maintenance phase, the world is lost.” She shares her experience candidly in a section of The Guardian called “Death and Dying,” which collects personal stories, interviews, and expert opinions on death, terminal illness, and grief, aiming to raise awareness.
Reaching a diagnosis wasn’t easy for Chen – a cross-cultural psychologist with experience in psychiatric assessment. As reported by the Roy Castle Lung Cancer Foundation, it began with chest pain. Her father and grandmother both died from the same disease, and a feeling told her not to ignore the symptom: “I had to insist with my general practitioner to get a chest x-ray. Now I’m sharing my story to help others do the same.” However, her doctor initially attributed the pain to anxiety on two separate occasions. The diagnosis finally came when she was 51 and preparing for her wedding, following complications during a biopsy in late 2022 that required two surgeries and delayed a definitive assessment. “If there’s one message I hope to share, it’s this: listen to your body. Trust your instincts. No one knows your life experience better than you. And sometimes, defending your rights could save your life.”
In the Limbo of Survival: “I Have to Decide Who Deserves My Oxygen”
Years later, she described her current state in an article for the British newspaper, stating: “I am not a ‘survivor’ in the triumphalist sense, nor am I at death’s door. I find myself in that long intermediate phase – a territory rarely explored where the body remains fragile, care is constant, and life does not so much proceed as stubbornly persists.” This period, she explains, is a “byproduct of the medical revolution.” She continues, explaining that “in the United Kingdom, just a decade ago, a diagnosis of stage four lung cancer represented a desolate precipice; when the standard of the National Health Service (NHS) was based on traditional chemotherapy, long-term survival rates were in the single digits.” Today, thanks to scientific advances, individuals don’t immediately fall into the void, but rather pause at the edge. This has led to the emergence of a category known as the “chronically terminal.” “This surreal duality forces us to confront our finitude while engaging in the disenchanted task of deciding which relationships deserve the oxygen they need.”
She was initially given 11 months to live – a prognosis typically associated with patients between the ages of 70 and 74 in the United Kingdom. However, her age was an exception. Her solid physical condition too helped to diminish the weight of the statistics, which didn’t become an absolute truth for her: “I distanced myself from sterile percentages and turned my gaze to the reality experienced by my peers: those who, 10 or 12 years after diagnosis, were still present, still radiant, still here. I stopped measuring my life in frantic intervals of weeks and embarked on the bold task of calibrating it in decades.”
Those facing a serious illness are often described as “warriors,” but Chen distances herself from this narrative: “Here, strength rarely has to do with ‘fighting.’ Military metaphors like ‘battle’ and ‘warrior’ are an unbearable burden for those of us who cannot ‘win’ in the traditional sense.” The issue of invisibility, well-known to those living with chronic conditions, also arises: “Friends assume I’m ‘fine’ because I look radiant, unaware of the two hours of horizontal rest needed before I can exit the house, or the mental negotiations I have to undertake to ensure I have enough breath to finish a sentence.” After a period of wearing a social mask, she chose to abandon it: a diagnosis like this marks a turning point, because you are no longer the person you once were. “Putting an end to a future while struggling for a present is a wrenching act of integrity; It’s the definitive refusal to waste my limited resources on a narrative that has fundamentally lost its truth.”
The Importance of Time: “A Place to Dwell”
Connecting with other patients led her to confront the illness even more directly. Central to her story is the funeral of Astrid, who died from the same cancer. “The eulogy delivered by her husband contained an appeal that evoked a sudden and strong reaction in me: ‘Don’t let the diagnosis define you.’ For years, the diagnosis had defined me; it had conditioned my movements, my social life, my remarkably identity. Yet, as I sat there, I realized that Astrid had practiced a silent and sovereign rebellion. She had used her illness as a kind of ‘permission,’ a license to stop acting.” Support groups then become fundamental: “At first we were strangers, yet we soon found ourselves bound by a profound intimacy that made conventional friendship seem almost superficial.” However, science – between biology and genetics – determines a continuous turnover: some survive, others do not. Chen is still here, and “this resistance carries with it a particular pain: the legacy of the survivor, of having seen the original cohort dissolve,” but also a responsibility to those who feel lost, as she once did: “I try to be their reference point, to offer a hand through the fog.”
In the vocabulary of those living with a chronic illness, terms like quantitative time and qualitative time also emerge. “It’s a change of frequency: moving from a life lived for the next milestone to one lived for the morning light around the kitchen table or for the depth of a single conversation. In this state, time is no longer a resource to be spent, but a medium in which to dwell.”
“The Biggest Challenge Is Choosing to Live with Gentleness and Self-Care”
Janis has also returned to her faith, attending church on Sundays. However, this isn’t the case for everyone. She recounts the story of Samuel, an acquaintance who distanced himself after his diagnosis: “’Why me?’ he asked during lunch, his voice broken by a resentment for which years of catechism had not prepared him. Samuel had been a ‘Christian since birth,’ attending church with his parents since childhood and following the invisible pact that says: I am protected by God. Now, facing the long phase of his illness, he feels the pain of a divine violation of the pact. He refuses to set foot in church since his last CT scan. For him, God’s silence is not peace; it is abandonment. This is the magnificent, tacit schism of chronically terminal patients. For some, the diagnosis is a purifying fire that burns away the futile, leaving a refined spiritual core. For others, it is an acid that dissolves everything they once possessed.”
Finally, her concluding reflection: “Living with stage four lung cancer has taught me that strength is not a measure of productivity or a narrative of ‘healing.’ It is found instead in remaining present in a life that no longer fits the frenetic success stories we are presented with. In a culture that fetishizes noisy ‘recovery,’ choosing to live with gentleness, attention, and on your own terms is an act of silent defiance. The long intermediate phase is not a waiting room, nor a prelude to the finish line; it is a challenging, vibrant, and deeply human place to live.”
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