a quiet battle ground blues

I used to think that the hardest part of illness would be the pain, or the fatigue, or the word cancer itself. But what hurts the most is something else. Uncertainty. I have never been particularly good at it. I want to understand, to be able to orient myself, to know roughly where I am. When the body is no longer reliable, that becomes harder. When the future can no longer be calculated, it becomes even harder.

There is a kind of irony in the fact that I have ended up with a disease that does not fit neatly into any category. It is cancer, but not in the way the word is usually meant. It is chronic, but not stable. It is slow, but constantly present. It can be treated, but not cured. It can be lived with, but never ignored.

Neuroendocrine tumors are not one single disease, but a collective name for many different conditions. For some people, life continues almost as usual. For me, it means living in a body affected by hormones and the nervous system in ways that cannot be seen from the outside but are felt constantly on the inside. A kind of inner alert that never really switches off. The body signals stress without it being anxiety. It stays in a state of activation that cannot be turned off by willpower.

On top of that comes exhaustion. Not ordinary tiredness that can be solved with rest, but a deeper lack of energy that is not always proportional to what I have done. As if the battery charges more slowly than it drains. As if every day begins with a deficit. It is strange to feel both overactivated and empty of energy at the same time, but that is what it is like.

This places me in a middle ground. Too functional to be seen as seriously ill, too affected to live as if nothing has happened. I do not fit into the story of acute cancer, and I do not fit into the story of a stable chronic condition. That also affects the sense of belonging. Because NET is rare and highly heterogeneous, it is difficult to find a group where experiences truly overlap. There is no obvious shared narrative and no clear “we.”

I notice how much I long to belong somewhere. To find my tribe. Not to become like others, but to not be alone in what I am carrying. I have often felt a little odd in the world. Now I also have a disease that makes it even harder to find reflection in others. It is both manageable and life-altering. It can be lived with, but never ignored. It is difficult to share an experience like that, because there is no simple language for it.

Right now, I am at the end of a treatment interval. I feel it in my body as heavy pressure in my chest and head, as an inner activation and as increased fatigue. My nervous system is alert without being in panic. I feel sad, but not afraid. More like a quiet acknowledgement of how things are today.

There is something sorrowful about living between worlds. Too healthy to be truly sick. Too sick to be healthy. It’s like fighting on a battle ground that others cannot see.

And yet, perhaps there is also something honest in that. That this life cannot be simplified into a category. That it is not a personal failure to not fit into a ready-made story.

I try to let it be this way. Sadness is allowed to exist. Fatigue is allowed to exist. The activation is allowed to continue. I do not have to shape a future right now, and I do not have to understand everything.

It is enough to put it into words, and admit that this is hard.

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