Abstract

This text is a raw look at remission: the nothingness that follows life-saving technology in oncologic patients. It maps the jagged intersection where disability bureaucracy meets the queer body within the public healthcare system. It’s about the shift from being a “survivor” to becoming a freakish figure on a park bench, calculating the cost of cat food and rent. I use the framework of “Skin Levels” to bridge the gap between two forms of fogginess, and what lies in-between: the “chemo-brain” of treatment and the “ketamine-brain” of the aftermath. It is a story of substances: the expensive chemicals administered by the medical team to keep you alive, the self-medication used to cope with the absence of a clinical routine, and the isolation of living in a foreign city. It is not a story of triumph; it is an attempt to decode the “Zero Level”: the specific state of alienation that remains when clinical intervention ends, and the social and financial bureaucracy of life in a new city begins.

Skin Level Zero

I compulsively feel my neck for lumps. I find none. They tried a new technology on me and, so far, it worked. They insisted on how much it cost (a privilege in our country, so underdeveloped). I nearly died a couple of times. At the time, I was just happy I didn’t. It was only afterwards that I came to understand that I didn’t die because I had insurance and luck. 

Skin Level One. Bureaucracy

At the hospital, there was no queue management system. You’d wait standing for at least an hour just to register, then wait for blood work, then wait some more for the routine check-up, and even more for the discharge papers. I often left empty-handed. It was worse if I needed medical leave; I’d have to wait until 3 or 4 PM, eating pastries while hovering nearby. You had to be there when they called your name.

My favourite nurse called me “moțato.” I was bald. She was a sweetheart.

Depending on the country, the life-saving technology is different: the trials, the research, the drugs. The hospital conditions, too. Some drugs arrive late, some arrive on time, some do only if you qualify on paper. Here, protocols are slow, computers lag, machines are old or overloaded. Appointments are postponed. What counts as “international standard of care” depends on borders, budgets, and negotiations that never get to touch your body, although they directly affect it.

One day, I waited six hours in the yard. The doctor came to me, saying she forgot to discharge the drugs from the hospital pharmacy: there were emergencies on the ward, and now the nurses had to go off duty. I went home and returned the next day.

A year later, they finally introduced a ticketing system. I faced a state medical system with massive bureaucracy, exhausted, exploited, and hierarchical staff and barely survived. I was usually angry at them, but we were all humiliated in different ways.

Skin Level Two. The Secret Networks Between Patients

I went to an acupuncturist, a young mom recommended it to me while we were in the treatment room. She presented him as a chiropractor, and I had problems with my neck after surgery. She told me not to tell the doctors: “They don’t need to know everything”. When I got there, this vigorous man told me what diet I should follow in order to get cured, but curiously, he didn’t even hint at stopping the chemotherapy. I found out it was a needle business when I was already too ashamed to leave. He didn’t sterilise the area. I paid 300 lei in cash. I don’t know how, but my pain really went away for a few days. I didn’t come back.

A young patient from Iași told me about a Chinese tincture he covertly bought from a pharmacist. I took a photo of it. Never searched for it.

And of course, the beetroot juice and positive thinking. Grounding, healing prayers, myrrh. 

My advice for you is to drink Coke when the nausea kicks in.

I learned to do injections myself: in the belly, the needle at 45°. A friend taught me. I can teach you as well, I still have some left in the fridge. And I learned not to get mad when people say they’re praying for me. I think it’s sexy, xoxo. [I still get mad when people call me brave.]

In the hospital, we shared wet wipes and washed ourselves at the sink. We also shared bread and bananas, and filled each other’s bottles from the water dispenser in the hallway at night. I was diagnosed late. I insisted on checkup after checkup after checkup, both at public and private clinics. A friend whose mother had cancer convinced me to get a second biopsy a year later.

The networks between patients work in hospital rooms and in the yard, in waiting halls and on WhatsApp. And it doesn’t even matter if the advice works. We all know it often doesn’t. It’s just agency we take back.

And that’s for some of us. Many don’t even have the means to make checkup after checkup after checkup to get a diagnosis. Thanks to the welfare state, we still have National Health Programs. Recently, a senator proposed a copayment for oncologic treatment. Most people I know wouldn’t be able to afford it. Public palliative care is limited and not easily accessible. It’s all on the caregivers: burned-out, invisible workers.

Skin Level Zero

Life shrinks to whose body’s being touched and who has diarrhea.

I had my body touched by doctors, and after that by a girl. I moved on, forgot parts of it, but still carried my freaky chemo port (they put it in for free — a little box under my skin with a tube that goes into my heart —, but I had to buy special needles on eMAG). It scared people away, so I covered it. It didn’t scare the girl away. They put all kinds of things in me for free. One day, they stopped and gave me some papers. And after that: remission. Congratulations on being a “brave soldier”. Fewer check-ups, fewer panic attacks, and silence.

***

My ketamine brain is similar to my chemo brain, but chiller. And I miss my old friends (jerks). My hometown is far away, and it smells like chemo. I tell myself I’m better off while checking my insurance status online. I am making my own treatment regimen now.

Here, people are so chill (like my ket brain) and so polite. So I smile at them while listening to the filthiest trap. I think about the money for rent, utilities, and cat food. For ketamine. The frustration I get from the girl, and the love that I get. The support that often comes with shame. My fluid body not contained by the filthiest trap. I escaped hospital structures and entered new ones. Level Zero unlocked.

Skin Level Three. Choosing Your Bed

State hospitals are not for queer bodies. Private hospitals may pretend they are.

In my hospital room, I was always “the little girl”. All the deconstructions I made through living theory cracked. Auto-theory does not stand on its own in front of the public healthcare system. Neither does dignity. The situated knowledge I gained came through:

— [The nurse who took my hand and rested it on her leg during the hardest times]

— [The friends who brought me food and wore masks]

— [The cat that bit me when I cried]

The queer slides everywhere and cracks the structure. In times of crisis, language may be just shit. There are soft and hard ways to reorganise it, and many ways in between that gatekeepers will try to control. And there are actions. Like sharing a Chinese tincture or a Paracetamol.

Skin Level Four. Ignorance

Walking from Izvor to the Palace of Parliament, a man in a suit honked at me from a Mercedes, signalling me to move faster. Over 30° Celcius, blazing sun. My knees hurt. My hair was gone, my immunity low, mask on. I looked bad.

If I had had the energy, I would have shouted FMM, FGM, and many others. I still feel the anger.

Skin Level Zero

My friend from Focșani, with whom I once smoked in secret in the hospital yard, was worried that I hadn’t frozen my eggs. I was worried I wouldn’t finish the treatment. We counted together the days until our last treatments. That day came for both of us <3. I got a scholarship, and after that, I quit my job and moved to another town. But suddenly I had nothing more to count, and I felt dumb. Going back to college felt like a prank.

My skin has changed. The scratch from the cat got weird (the area is still brown). I twisted my ankle while walking, and it turned red. I burned my finger with steam while cooking, and it took forever to heal. My inner organs have a similar story, only more dramatic, so let’s stick to the skin.

My friend from Focșani didn’t tell anyone she had cancer. She had fewer adverse reactions to treatment, but she couldn’t leave the house without a wig. She wouldn’t even pull the blinds up. At first, I felt funky with my baldness (cuz of the deconstruction shit), until the skin started to feel weird. The IV drugs changed it. I didn’t want to leave the house.

***

Cancer is so banal it bores. I sat on the couch all day with high-level-anxiety waiting for texts, memes, and reels. Cancer ghosting is real. Reddit saved me. I’ve listened to all the music from your insta stories (evil platforms). I had the same conversation several times without realising it. Now, it’s my turn to listen to my friends on different treatments repeat themselves. I think that’s care. 

I’ve got two more months until the next scan. The last one was ambiguous. For most oncologic patients, survivorship is just a long remission, and that’s just fine.

In this new town, most people don’t know about my foggy brain. I do my job and sometimes wear a turtleneck and a ring, and they probably think I am a smart-ass nonconformist, aka a young-white-hipster-with-subversive-short-hair. I am a white disabled hipster, and my hair just fell off.

***

While self-medicating, beware of ketamine bladder syndrome, addiction, and most importantly, the police.

[switch to alprazolam]

[switch to lorazepam]

Chill out, babe, and ask for help when you lose it.

***

At night, I sit on a bench in the back of my block, in my not-yet-gentrified neighbourhood. I stare at the eight-floor building full of people and think of their bodies and how they earn a living. The windows flicker in blue and white lights: they pay for television. The government has decided that, from now on, it will also tax the disability allowance. During treatment, I got 496 lei. Now, in remission, I get 80 lei. I try to do the math with the taxes, but I fail. My brain is foggy lol. Someone else is doing the math for me.