A state of chronic crisis

Of all the people diagnosed with cancer each year, neuroendocrine tumors (NETs) account for approximately 0.7%. Of those, 30–35% have small intestinal NETs. More than half of them develop carcinoid syndrome, and according to the figures I have come across, only around 10% of patients with small intestinal NETs have inoperable disease.

I belong to every single one of these groups. I have around 40, pretty large metastases throughout my body, an inoperable primary tumor, and an incurable cancer that has already changed my life beyond recognition. Statistically, I am a minority within a minority within a minority, and even among people with the same diagnosis, I struggle to recognize my own reality in their experiences. Some undergo surgery, others receive treatments that significantly reduce their tumor burden, and many live relatively normal lives with a slow-growing disease. My own situation is one of extensive metastatic cancer, limited treatment options, and a body that is already severely compromised.

Living with incurable cancer means living in a state of chronic crisis, something that traditional crisis theory, with its expectation of adjustment and eventual resolution, does not adequately describe. There is no point at which the event is over and life can begin again, because the circumstances that created the crisis remain. It is not something I have failed to process or move beyond, but something I continue to live with every day.

I recognize the particular cruelty of prolonged uncertainty from my five years of involuntary childlessness, when I watched life continue around me without knowing whether I would ever become a mother. But there is a brutal difference between that experience and this one. Back then, I was waiting for the possibility of gaining something I desperately wanted, whereas now I am living with the knowledge that my cancer is incurable and will most likely cause my death. I simply don’t know when, or what I will have to endure before that happens.

I am not simply living with a diagnosis, but with a body that has become a prison. Carcinoid syndrome, POTS, hEDS, and relentless exhaustion have reduced my physical world to a fraction of what it once was. My days are dictated by symptoms, unpredictable physical reactions, and an almost complete absence of reliable energy. Even ordinary activities such as taking a shower, having a conversation, going grocery shopping, or spending an evening with friends come at a cost. Things that once happened without thought now require planning, calculation, and recovery, and sometimes they are simply impossible.

What makes this particularly difficult is that mentally, I am still the same person. I still think, question, laugh, argue, become fascinated by things, make plans, and want to participate in life. I have not lost my appetite for living, but I have lost much of my ability to act on it. My mind is constantly reaching for a life my body refuses to let me have.

That disconnect is exhausting in a way that goes far beyond physical fatigue. I am fully aware of everything I am missing and still feel the impulse to get up and participate, but wanting something badly enough does not make it possible. Determination cannot overcome a body that simply does not function. I can push through some things, but there is always a price, and increasingly, the price is more than I can afford.

There is very little freedom in a life where almost every decision depends on whether my body will allow it. Spontaneity and independence become increasingly restricted, and even pleasure has to be negotiated around physical limitations. I cannot rest my way back to health, and no matter what I do, I cannot take a break from being sick.

Much of my life is spent simply putting up with feeling terrible. I get through the day as best I can, cancel things I was looking forward to, and spend far more time resting than I want to. Sometimes I lie there feeling mentally wide awake, frustrated that yet another day is passing without my being able to do much with it. I still have good moments, and I genuinely enjoy them, but they don’t change the fact that so much of my everyday life is about enduring rather than actually doing the things I want to do.

And all the while, time keeps passing. When you have incurable cancer, time is not an abstract concept but something you know is limited, which makes it particularly painful to spend so much of it simply surviving. There is something almost obscene about being so acutely aware of the value of life while having such limited physical ability to enjoy it.

Recently, I reread my journal entries from the time of my diagnosis in the spring of 2024 and the months that followed. Two and a half years have passed, yet much of what I wrote could have been written yesterday. I was describing the same exhaustion, frustration, and unanswered questions that I am still dealing with today. It was painful to realize how much time has gone by without any fundamental change in my circumstances. I have lived those years, loved through them, laughed during them, and suffered through them, but I have also spent an enormous amount of that irreplaceable time waiting, enduring, and trying to get through the day.

The uncertainty about the future adds another dimension to all of this. I know enough about my disease to understand what can happen, but not enough to know what will happen to me. I have no idea whether I have one year, five years, or longer, or whether my physical condition will improve, remain as it is, or deteriorate further. I have to continue living and making plans without knowing when things might change, how serious those changes will be, or what my life will look like when they do.

There is also an expectation that I should make the most of the time I have, find joy, create memories, and focus on what remains possible. I understand that, and I do all of those things to the extent that I can. But I refuse to pretend that finding happiness makes the situation acceptable, or that I need to turn my illness into an inspiring story about resilience and personal growth.

Another difficult aspect is the loneliness of being so physically ill while still feeling so alive mentally. People see me talking, laughing, thinking clearly, and engaging in conversations, without necessarily understanding the physical effort involved or the exhaustion that may follow. My illness does not always look as severe as it feels, and the fact that I can still function intellectually makes the extent of my physical limitations difficult for others to comprehend. Sometimes I struggle to fully comprehend it myself.

For the people around me, my cancer has gradually become part of the background of our lives. They know I am ill, they take it into account, and life continues. For me, however, it never recedes into the background because it affects almost everything I do and every decision I make. Even the people who love me most can only observe what it is like to live with these limitations, while I have no choice but to experience them.

I am not asking for pity, but I do want the reality of this existence to be understood without being softened, reframed, or turned into a lesson about resilience. I am still fiercely interested in life, with plans, opinions, dreams, and a sense of humor. None of that makes me less sick, just as being this sick does not make me any less interested in living.

The feeling of imprisonment comes from having a mind that still wants so much from life while being trapped in a body that increasingly dictates what is possible. I am left trying to make the most of my circumstances while enduring a level of physical illness that I cannot escape, without knowing how long it will continue or what lies ahead.

To describe me as being stuck in a crisis suggests that there is somewhere I could have moved on to, if only I had managed to process things differently. But the crisis is not in the past. It is the reality I am still living in, and no amount of acceptance or psychological adjustment can change that fundamental fact. It is what it is, and it ain’t great.