Text: Tatiana Goryunova
As a child, I loved to lie with my mother in an embrace, buried in her ashen hair. I stroked her head and looked at the scar on her neck, wondering where it could come from, came up with incredible fairy stories, and my mother always agreed and admired my fantasy. As I got older, memories began to pop up in my head: my mother's emaciated body, unwillingness to get up and appreciate my LEGO masterpiece, her night fevers, a sudden change of hair. Years later, as is typical for adolescents, I asked a direct question and received an exhaustive answer: "Lymphoma." I was shocked, but at the same time I finally stopped being tormented by conjectures. Since then, the occasional news about patients with oncology worried me greatly and madly touched me, since the disease was very close. I was very proud of my mother, but by tacit agreement, it was decided not to discuss this in the family and beyond.
In the spring of 2015, I started having nightmares about dead animals, maggots, hospital wards and operating rooms, and falling teeth. At first I didn’t pay attention, but later, when the dreams became regular, I had an obsession with going to the hospital for a full examination. With loved ones, I shared the thoughts that the brain can send a signal about the disease in this way, but I was convinced that there was no need to be suspicious and come up with nonsense. And I calmed down. In the summer, I fulfilled my old dream of crossing America by car from ocean to ocean. Friends were delighted, and my impression was blurred by the feeling of wild fatigue, constant shortness of breath and pain in the chest. I wrote off everything on laziness, heat and gained kilograms.
In October I returned to sunny Moscow, and, it would seem, should be full of impressions and strength after the rest. But I was just bent over. At work it was unbearable, the fatigue was such that after a working day I only dreamed of being in bed as soon as possible. It was torture to be in the subway: my head was spinning, my eyes were constantly getting dark, I fainted and got a couple of scars on my temples. I was sick of foreign smells, be it perfume, flowers or food. I pulled myself up and scolded myself for not being able to get into my usual rhythm of life.
I spent one of those evenings with a friend I hadn't seen for a long time: dinner, wine, jokes, memories and endless loops of conversation that made me stay overnight. The next morning, while collecting my long hair before washing my face, I brushed my neck and noticed a tumor the size of an orange. At the same second, she put forward the exact assumption that it was, but remained surprisingly calm, and then cursed herself with the words: "No, this can happen to anyone, but not to me." At breakfast, a friend noticed a tumor and suggested that it might be an allergy; I agreed, but memories began to flash in my head, pushing me to the word "cancer".
On the way to work, I finally realized the seriousness of what was happening and realized that I should immediately go to the doctor. I remembered my mother's scar - exactly at the site of my tumor. Through a swarm of chaotic thoughts, I heard a friend try to cheer me up and joke ridiculously, but this made me more and more scared, and I felt a lump in my throat, and tears welling up in my eyes.
A couple of hours later, without any emotion, I was sitting in a cold corridor on a bench in a district clinic. After some confusion, the therapist concluded: "You are most likely allergic - nothing to worry about, take an antihistamine." I talked about my mother's illness, suggested that an ultrasound scan should be done, but in response the doctor uttered a phrase that put me into a stupor: “We have all the directions according to quotas, you look healthy - look what rosy cheeks - I have no reason give it to you, go. " Later, many times I came across the indifference, incompetence and negligence of doctors in state polyclinics.
Winter. Everything started spinning after I, without listening to anyone, still made a computed tomography. The image clearly showed conglomerates of huge lymph nodes in the neck and chest, enlarged heart and spleen.The radiologist sent me to the oncologist, and the oncologist to the hematologist. The latter praised me for my perseverance and vigilance and confirmed my guesses, strongly advising me to cut out a part of the tumor for research (the exact diagnosis is made after biopsy and histological examination). After the operation, I heard the medical code "C 81.1" indicating my illness. I had to overcome a lot in order to finally find out the correct diagnosis and start the long-awaited treatment.
Hodgkin's lymphoma (also called lymphogranulomatosis) is an oncological disease. Interestingly, in the medical community it is not called cancer, since a cancerous tumor is formed from epithelial tissue, and the blood cells and lymphoid tissue, from which a lymphoma tumor is formed, do not belong to them. But in terms of their development, course and effect on the body, lymphomas are aggressive, just like cancer, and can affect other organs and systems, in addition to the immune system. Therefore, if you do not delve into medical terms, they say that this is "cancer of the lymphatic system." This makes it easier to understand what we are talking about and how serious the disease is. The exact cause of Hodgkin's lymphoma has not yet been identified, sometimes the disease is associated with the Epstein-Barr virus. Lymphogranulomatosis is considered a disease of young people, since the first surge in incidence occurs at the age of 15-30. At present, survival projections for early detection of the disease are quite positive. Maybe that's why I was sure from the very beginning that everything would work out for me, or maybe my mother's example helped.
It was important for me to understand what I have to go through. I asked to show me the excised lymph nodes, explain the test rates and the mechanism of action of the drugs
We immediately went to my mother's doctor at the N.N. Blokhin, but, unfortunately, by December the quotas for free treatment had already expired. Given the bureaucracy, new quotas would appear early next year, after the New Year holidays - that is, according to the best forecasts, on the twentieth of January. We could not wait - my condition was getting worse. I decided to be treated for a fee. Friends found a doctor and a clinic for me. Vadim Anatolyevich Doronin, a hematologist, director of the Scientific Society for Medical Innovations, became my leading physician. From the very first minutes of the conversation, I realized: this is my doctor, I can trust this person with my life. He clearly set tasks for me, outlined a treatment plan and said that he believed in me.
We agreed that we would act openly, as I wanted to know all the details and the whole truth about the prognosis and course of treatment. Mom later said many times that she admired my courage, because she did not want to hear anything about the disease, she just wanted to be cured as soon as possible. But it was important for me to understand what would happen to my body, what I had to go through. So I could mentally prepare myself, independently, make balanced decisions and more easily endure all the pain and side effects of treatment. I asked an endless number of questions, asked to show me the excised lymph nodes, explain what the test rates mean, and describe the mechanism of action of chemotherapy drugs.
I was very lucky with all the doctors and medical staff: everyone was incredibly attentive, instilled confidence in me, joked and told stories. Chemotherapy was given every two weeks, and I completed all courses in five months. A month later, I underwent a control tomography, and after numerous consultations and consultations, they decided to "finish off" the disease with radiation therapy. Chemotherapy is not something supernatural, as many imagine; they are just droppers of potent chemotherapy drugs that kill cancer cells. Radiation therapy is a procedure in which a cancer is targeted using ionizing radiation.
For radiation therapy, I ended up in the RMAPO clinic, where Konstantin Andreevich Teterin and Elena Borisovna Kudryavtseva became my leading doctors.The radiologist and physicist greeted me every day with smiles, asked me about side effects, set the markings for radiation therapy with trepidation, and set the quota for the best device. I could call my doctor at any time, get clear and effective advice. I understand that I am a real lucky one, if it is appropriate to say it in my situation. In city institutions, people first wait for quotas, then collect money for missing drugs and paid procedures, wait an unbearably long time for surgery, slide down the wall in huge queues for chemotherapy every time, cannot get urgent medical care with severe side effects, and sometimes even find out that the diagnosis was made incorrectly, and they are being treated again, according to a different scheme. The treatment takes years. I "shot" pretty quickly - in a year.
I came to chemotherapy in the morning, took a detailed blood test, and if the indicators were acceptable for chemotherapy (that is, my body could withstand it), I was hospitalized. The drip itself is a relatively painless process. There are some tricks that everyone learns over time or learns from more experienced patients. For example, I never ate before hospitalization, as I was terribly nauseous, even in spite of antiemetic and pain relievers that smooth out the toxic effect. There is a chemotherapy drug of red color, which is called differently among cancer patients - either "compote" or "sweet". During its introduction, it is worth drinking ice water to avoid stomatitis. It happens that the veins begin to burn, this is a wildly unpleasant sensation - then it is worth slowing down the speed of the infusion pump. Many are given ports to avoid burning their veins, but my veins have managed. Of course, they gradually disappeared, and by the last courses the hands were absolutely without veins: white-green, all bruised and burned. After the dropper, one could stay for a couple of days under the supervision of doctors or be discharged home. A day later, the most "interesting" began: vomiting, pain in bones and internal organs, gastritis, stomatitis, insomnia, diathesis, allergies, deterioration of hematopoiesis, impaired heat exchange, and, of course, hair loss.
The drugs completely change the perception of the world. My hearing sharpened a thousand times, my perception of the taste of food changed, my sense of smell worked better than that of any dog - this greatly affects the nervous system. Most of the time between drug infusions is spent fighting side effects. I had to monitor the blood, as I had persistent leukopenia and thrombocytopenia. I gave injections in the abdomen, which stimulate the work of the bone marrow, in order to restore all the parameters before the next chemotherapy. On average, there were three to four normal days between drug infusions, when I could move around and take care of myself, watch a movie and read a book without assistance.
At this time, friends visited me and told me about the outside world, which for me simply did not exist. Lack of immunity did not allow me to go outside - it was life-threatening. Gradually, the body gets used to chemotherapy, like everything else. And I learned how to spend time more productively without paying attention to the side effects. But with addiction comes psychological fatigue. In my case, it was expressed in the fact that I began to feel very sick a couple of hours before hospitalization, when nothing had been done to me yet, but the body already knew ahead of time what was ahead. This is very upsetting and exhausting.
There were fewer side effects from radiation therapy. I was promised vomiting, burns, fever, stomach and intestinal problems. But I only had a fever and, in the end, a burn of the mucous membrane of the larynx and esophagus. This made me unable to eat: every sip of water or the smallest piece of food felt like a cactus. I felt him slowly and painfully descend into the stomach.
The scariest moment was when we could not find the necessary drugs - they simply ran out all over Moscow.We collected the ampoules literally one by one: the girl who had completed the treatment gave one of them, the remaining three were brought by classmates from Israel and Germany. A month later, history repeated itself, and out of despair, we took Russian generics (analogues of foreign drugs) under the compulsory medical insurance - this turned into a four-day nightmare. I did not think that a person could experience such pain. I could not sleep, hallucinations and delirium began. Painkillers did not save, the ambulance made a helpless gesture.
The next blow was the conclusion of the control positron emission tomography (PET). The images revealed the process of destruction of the femur. A series of numerous checks, guesses, procedures, operations began. They said that it was an untreated lymphoma, that initially I had the fourth stage, but this focus of the disease was not noticed. Then they reported that it was osteosarcoma (bone cancer) and needed prosthetics. It was at this moment that I clearly understood the essence of the phrase "There is nothing more important than health" and realized that people die of lymphoma. In the end, the doctors reassured that it was neither one nor the other, and decided to observe. I still haven't received a definite answer.
The incessant stream of calls from friends made me repeat the same news an infinite number of times. I decided to create an instagram in which I would post photos and news for my friends. The doctor supported this idea, since I had accumulated a lot of impressions, emotions and thoughts that I kept inside, simply because I did not want my mother to be upset and nervous once again. Despite my positiveness and resilience, I wanted to discuss pressing problems, ask exciting questions, or just chat and laugh at my situation. Through tags and locations, I found people who fully understood me. Correct support is very important for a cancer patient: lisping and indiscriminate fidgeting are terribly annoying, neglect and indifference are depressing. I think that relatives and friends need to be explained how to behave so that a person who goes through such trials can remain a person: he does not slip into hysterics and aggression, but does not become unstuck.
You cannot be silent, afraid of the diagnosis and in every possible way to deny it. It is important to talk about it, to fight against ignorance and fear. With this we can save many
There is another extreme: I remember that sometimes I could not distinguish between the pains characteristic of chemotherapy, and those that are worth paying attention to, not tolerate and urgently inform the doctor. I endured everything, and the doctors scolded me for it. Such situations are dangerous - this also needs to be explained to patients. Sometimes it is very difficult to soberly assess the situation and maintain a balance - for this you need to speak openly about the problem, communicate with people who have gone this way, not be afraid to ask for advice or help. In our society, there are too many myths around oncology and the labels that are attached to it. For example, some of my acquaintances stopped communicating with me because they thought that I would infect them with airborne droplets or even psychosomatically. I can only smile at such statements.
I think everyone knows that during treatment a person's hair falls out and he can lose a lot of weight, but more often than not, contrary to popular belief, many gain weight - due to the use of hormonal drugs during therapy. I lost some of my hair and recovered noticeably. I must say that I entered that small percentage of patients whose hair does not fall out all at once and completely. At the end of the treatment, I began to look like some flabby biker from Louisiana: I had a huge bald spot on the top of my head, and there were long hair around. My sister and I were terribly amused. When I collected them in a bunch, I could calmly go to work and not surprise anyone with my appearance.
After enjoying the image, I shaved my head and felt a real delight. Words cannot convey how I liked being bald! I was filled with enthusiasm, audacity, incredible pride and self-confidence.I liked it when people stared at me, I was not afraid of questions and I was not ashamed of myself. Of course, I had to deal with condemnation, and a couple of times with outright aggression. People could shout something after, wag their fingers, push, make a remark. I could only feel sorry for them, because if I had told about the diagnosis, most likely they would have felt ashamed. There was a funny incident: I went to radiation therapy, bald, in a dress, with markings on my chest, and opposite in a trolley bus were two women in their sixties. I was listening to music, but at some point I accidentally heard an excerpt of their conversation: “Don't look at her, I've seen such people - this is a Satanist! Look at the marks on her chest! " I laughed out loud - I could not help myself.
For me, psychologically, the most difficult thing is not chemotherapy and radiation therapy, not operations and sidelong glances, but control tomography after treatment. Now I am in remission, but I will be considered completely healthy only in five years. There is a term "five-year survival" - it means that there is a possibility of relapse (return of the disease). He promises more complex and aggressive treatment, as well as a bone marrow transplant. All this is very difficult to bear. Therefore, you need to be careful: avoid the sun and stress, stick to a diet and follow the individual doctor's recommendations. Of course, before each control, the heart stops, and you begin to listen to your body. You need to overcome this fear and not fall into paranoia. Fear is okay, but you don't have to give your life to it.
In addition to the physical consequences of the treatment, which can creep out over several years, there are also psychological ones. Sometimes it can be very difficult to fit into the usual rhythm. It seems to me that it is important to be able to pull yourself back and give yourself time. It will not be possible to immediately return to the usual pace - there is a danger of disrupting the still fragile organism. It's hard for me to come to terms with this, because I like to live actively. Sometimes in such cases, psychological rehabilitation is needed. For some reason, many people think that this is a shame. I think that it is necessary, but it can be different: it can be conversations with a psychologist or simple walks, travel, sports or any other hobby.
The most important thing: you must not be silent, afraid of the diagnosis and in every possible way to deny it. It is important to talk about it, to fight against ignorance and fear. By this we can save many. Now I try, whenever possible, to help those who find me through social networks, as well as to participate in charity events. For example, I'm friends with the girls from Cancer. Confession. Control: we did photo shoots and a video channel, they offered me to administer the project's chat. I would like to do more and involve more people in this, since there are many more people who are faced with a diagnosis than is commonly thought, and they all are waiting for support.
Photos: personal archive