"You can't think about the future at all"

Ulyana Kazetova - about how she finds strength and money to combat cancer

Six years ago, the doctors made the 27-year-old Ulyana Cazova diagnosis of Melanoma, and in 2019, Ulyana had metastases in the brain. During the illness, she underwent several operations, various types of irradiation and drug therapy, and in order to survive, she created a blog where she collects funds for expensive treatment, writes about her life and helps other cancer patients. "Cold" talked with Ulyana Kaznova on how to live with such a diagnosis.

I am 33 years old. I was born in the city of Kovrov, Vladimir Region. There I studied at school and institute, received a specialty of a psychologist. In Kovrov, I met my future husband, and in 2012 we moved to St. Petersburg.

I worked until 2019. In Kovrov, during my studies, I taught computer courses, and in St. Petersburg I worked as a psychologist - I told people how to communicate with customers, respond to objections, selling various products. In parallel with work, I was engaged in creativity - I made a mosaic made of stained glass, I painted the paintings with oil. Now, because of my illness, I am not very active.

I always had quite a few moles. In 2011, I drew attention to one of them - on the lower leg. I saw that it differs from the rest. For a while I just looked at her and thought that, probably, she needed to show her to the doctor, because she was scratched, increased and changed color. I knew that I had to go to the hospital for the oncologist, and not in some kind of beauty salon, and show a mole, listen to recommendations. In 2014, I got an appointment with the oncologist at the General Profile State Clinic. He said that, in principle, the mole looks good, but it needs to be removed and sent to histology ( microscopic examination of tissues. - approx. "Cold" ). I was not at all afraid at all. A few weeks later, my mother called the doctor, he said that everything was fine, and I forgot about this story.

A year later, I saw a small tubercle under the skin on the site of that mole. I thought it was some kind of scar. I went again to that doctor, and he told me: “Something strange, let's try to remove and look in the laboratory again.” As it turned out, for the first time, when the mole was taken for histology, a mistake occurred, and it still turned out to be malignant. I waited for histology for three weeks, for some reason it happened longer than usual, and I began to worry, I thought that, probably, they found something there. My mother was in touch with the doctor. He wrote to her by e -mail about melanoma, although from the point of view of medical ethics it is wrong, you need to invite you to a full -time reception.

I learned about the diagnosis from my mother. She came to my house and said: “Here is histology. You have melanoma, ”and immediately gave me a sedative. Then I did not know what melanoma was. I knew that there is skin cancer and some malignant moles, but I have never heard the word itself.

Of course, it was scary. I went on the Internet, which can not be done, but no matter how much you say to people, they will still do it. On the Internet, I saw that melanoma is the worst cancer that could be called the “black queen of tumors”, and I thought that I was not a tenant at all. I did not know what I should do, whether they would cut off my leg, whether I will have chemistry. I had no information, because the doctor did not explain anything. So we lived for several days, tried to find out something from friends, looked at what hospitals we have and which doctor you can go to. Of course, for any person who learns about such a diagnosis, the first days are the most terrible, incomprehensible and disturbing. When you begin to find out the information, it becomes easier, but when it is not, it is hard to transfer. I was sitting on the Internet, looking for information, trying to calm down, lay in bed, cried.

On the second day, I just opened my VKontakte page, entered the list of friends, whom I had 300 people then, and began to write to everyone in a row. I don’t know if it is worth doing this, but it was my way to find out at least something. I watched who is connected with medicine, who is more advanced, who can know something, and simply wrote to them: “Hello, I have a problem. I was diagnosed with melanoma, maybe you can tell you what to do? ” Many people now write to me, because they find my blog on the Internet, and I had no one to write then.

Due to the fact that I myself began to look for information, somewhere within a week I realized an approximate algorithm of actions-which hospitals and which doctors need to contact me to be prescribed treatment. We did so - we signed up for consultations in the near future, where the doctors explained everything to me.

How does treatment usually take place? This is either surgery, or irradiation, or drug therapy. I had everything from the list. It happens that a melanoma is cut out, and a person has a remission. Unfortunately, I did not succeed, the disease did not want to let me go. At the first stage, I was treated at the Research Institute of Oncology named after N. N. Petrov ( now the NMIC named after N. N. Petrov. - Approx. "Cold" ) in St. Petersburg. At first I had frequent relapses, that is, they performed the operation, prescribed treatment, and six months later the bump in the same place. They looked: "Yes, you need to cut it again." They cut it out, and again the bump. For some time, relapses arose with a frequency of six months, and since 2018 I had practically no periods of remission-the tumors in the body were constantly, then less, then better, then worse.

In the spring of 2017, I found a tumor on my shoulder. I was diagnosed with the fourth stage of melanoma, as these were already distant metastases. I needed to be treated with drugs that were not registered in Russia at that time. Previously, melanoma could not be cured by almost nothing. That is why, when I first went on the Internet and read about my diagnosis, I saw terrifying statistics, which could not be worse - lie down and die. But it so happened that then a new method of treating cancer was discovered - immunotherapy. Around the same time, active clinical studies of immunotherapy were carried out, and in 2018, for its opening, they gave the Nobel Prize to two scientists (James Ellison from the USA and Tasuku Khondze from Japan. - Approx. "Cold"). If earlier the main method of treatment was chemotherapy, when everything is killed: both sick cells and healthy ones, which are then restored, then immunotherapy acts in a completely different way: it teaches her own immunity to recognize tumor cells and fight them using immunity. Melanoma has always been complicated, so all new methods of treating cancer are initially examined on it. This is probably good and I was lucky. At the moment when I needed effective drugs, they were already invented and began to explore. If I fell ill, for example, five years earlier, they would say to me: “There is chemistry. If you enter five percent of people who are lucky, then it will work. ”

In thematic groups in social networks and forums, more and more information began to appear that melanoma abroad is treated with immunotherapy. I clarified with my doctors, and they confirmed that these drugs can help me. At that moment, they could either be bought abroad (but they cost unrealistic money), or get into clinical trials and get it for free. My mother and I went to the site where all the currently conducted clinical studies of all drugs for all diagnoses around the world are described. When we scored Melanoma, two thousand studies were displayed on the site. My mother and I divided them into two to find the right for me, and sat for several days, practically did not sleep, opened each study and transferred it to the Google translator from English. We filtered up to ten studies that I could go into, and began to write in clinics. Someone immediately refused me, someone said that they did not take foreigners, there were different reasons. But finally, they answered me from the clinic in Berlin, where Navalny was lying later, they said that I was coming to them.

I went to Berlin and my husband. In the clinic, all communication takes place in German, so we did not know how we would talk with doctors. The husband remembered that he had a Russian acquaintance in Berlin, we wrote to him, and he agreed to go with us for a consultation. We met with doctors, I showed them all the documents, all the discs, passed the necessary tests, and they told me to wait. On the last day, when they could be included in the study, they invited me and said that I did not fit them, because my disease went further - there were metastases in the lungs. I was in complete shock because I did not know about these metastases. It is one thing when you have some kind of tumor under your skin, and another in a vital organ. It was a very dramatic moment. I remember how I sat and cried. We left Berlin, and I was left with nothing, and this was my last chance to get treatment for free, since at that moment immunotherapy could be obtained free of charge only through clinical studies.

Having returned to Russia, I realized that if I can’t receive medicines for free, I need to buy them: contact funds, to medical institutions. Then, in 2017, they said: “No, we cannot provide you with them”, but now these drugs are already given to the patients in Russia.

I decided to make a page on social networks and open the collection - I created the VKontakte group and on Instagram and posted a post. The drugs had to be taken for at least a year, so I counted the amount for this time - it was 4.5 million rubles. Thus began my blogger path. I had no experience, an audience, but my first post shot, people reacted well. I remember these sensations-you have a birthday: everyone writes, wishes health, and transfers are going on. Then all this was a novelty for me. In the first day, a million came to me. It was unimaginable. My phone, then he was button, just did not stop, and I was looking for where the sound was turned off so that it did not squeak. For a month with a little I have gathered the necessary amount. I closed the collection and decided that I had to somehow continue to blog and write about my well-being. I’m still writing.

Everything went wrong as planned. Three months later it turned out that therapy did not work, and the tumors only grow. I was replaced by treatment, irradiated. Further, for several years there were many more treatment lines - surgery, drug therapy, irradiation. In 2019, I found metastases in the brain. It so happened that Melanoma rebelled and scattered a bunch of tumors over the body and in her head. Then I took targeted therapy (one of the types of drug therapy for oncological diseases, based on electoral intervention in intracellular mechanisms.-Approx. “Cold”) , but for some reason it acted on the body, but there is no on my head. In a private clinic, I was irradiated with a gamma-knife (installation for radiosurgery of pathologies of the brain.-Approx. "Cold") and spotted foci pointily. But after irradiation, the tumors continued to appear - at first there were four of them, then 15, then 30, then 50 pieces. Each time I was invited to a new procedure and burned from 8 to 10 pieces. Usually this procedure is made to a person once, but I passed it 11 times and in total, 74 metastasis in the brain was burned for me. Recently, I took another, the most modern type of irradiation - proton therapy. The staff of the center where I did this procedure calls me a "unique patient."

Gamma-knife is just part of the treatment, because it can “kill” existing tumors, but it was necessary to make sure that new ones would not appear. As a result, the doctors picked me up combined immunotherapy, thanks to which the new metastases ceased to appear, and the old ones stopped growing.

Unfortunately, there are very few drugs for the treatment of melanoma. And due to the fact that I have such a violent disease, I have passed the treatment courses for a long time, and some two or three times. Of course, I have to buy most drugs myself, because they provide me only by the protocol - doctors have no right to prescribe the same medicine for the third time. But thanks to the blog, I can survive.

Now I am making an MRI every month. The tumor in the occipital area of ​​the head, which appeared one of the first, managed to grow quite a lot. All the rest are stable, and it is periodically increasing. Last summer, it traveled up to five centimeters, but I already had all the available treatment options, so last summer I signed up for a consultation with the Israeli professor. She cost a thousand dollars. The professor prescribed me the drugs not registered in Russia, which, however, are registered in Europe and the USA - Braftov and Mektovi. If you transfer to rubles, they cost 1 million 300 thousand per month. Starting from September 1, 2020, I take these drugs, and they help me.

I still have a collection of money because I need medicine all the time. In April, I have tablets, now I need to buy them for May, which now I need to collect 850 thousand. I bought some myself, and some were handed over to me as a gift-there are people in Russia and abroad, which were also treated with these medicines-for example, they did not help someone and the person died, and the medicines remained with relatives. When I bought the first pack, I wrote a post that if you have unnecessary pills, I will buy them or accept them as a gift. Quite a lot of people helped me, for example, relatives of my friend, who was gone in 2019. Also helped with the Petersburg charity fund Advita. And there was also an amazing story: I was written by a subscriber on Instagram that she found a girl from Australia, who was treated with my medicines. I wrote to her in English: “Hello, my name is Ulyana. I am from Russia, and I have melanoma. I am treated with the same medicines, what if you have them left? Maybe you will share with me? ” She answered me that they were just lying and she no longer needed, and asked how she could send them to me. The fact is that these drugs have a temperature regime - they can not be frozen, plus through the border you can not just send medicines, they need to be registered. She says: "You see, I can send them, and they will simply be destroyed at customs." I answered her that I understand everything, but ready for anything. We probably waited a whole month. I was already resigned that nothing would reach, but it came. I still finish them. Now, because of the coronavirus, it is very difficult to buy pills assigned to me, because in Russia they are not sold, the boundaries are closed, and each time buying drugs is a quest.

I probably got used to the fact that I have to look for funds for my treatment. Of course, sometimes I think how cool it would be, if I hadn’t depended on anything - and every day I depend on the pills, I drink them 12 pieces per day. Sometimes you get a whole pack and think: "How many are there, how good!" - And you do not need to think at least a few weeks about it. But they are consumed so quickly that it takes several days, and you see that there are already few of them. Anyway, thanks to my blog and the people who are signed on me, I understand that not one, and I have no terrible fear that it will end now, but there is confidence that people will help me. I have fear of closed boundaries - that I will not have time to buy medicines and take them. I try not to think about what will happen. I live today and do not know what will happen in a week. Anything can happen.

Now my tumor has grown up again in my head, and I will need to undergo proton therapy. It is very expensive, but there is a quota for Petersburgers, and now I'm waiting for me to confirm it.

The most difficult thing is when you are sick is to rebuild live in a new reality. Also, a difficult sense of uncertainty for me is that you have no future, that you cannot make anything. Maybe now people are more understandable to my situation in connection with coronavirus, because everyone fell into a similar situation and cannot plan anything. Of course, it is much sharper for me. This is very unexpectedly overtaken when you understand that you cannot plan a vacation, you cannot think about the future at all. Every time I try to think about him, I understand that I don’t know how I will feel.

Probably the adoption of the situation comes gradually. My disease is very serious and got me very much during this time, but still it developed gradually. It happens, since - and the fourth stage, you need to go to bed, cut. And my well -being and the situation worsened gradually. At first it was like this: cut out - and walk for six months. During this time, your psyche is adapting to a new reality.

They often ask me what gives me strength. It is difficult to answer this question. Probably some understanding that you can’t get away from this and you need to adapt. It happens that people say: "I could not." Well, what would you do? You just got into this situation, and you no longer roll back. With some small steps you pull yourself out of this: somewhere distracted, somewhere to walk, meet friends somewhere, eat delicious food. Again, everyone has a different psyche-someone can fall into depression. I turned to full -time psychologists in hospitals, but I did not have a sharp state when I need to pull myself out.

У меня есть алгоритмы, которые я соблюдаю, когда я попадаю в яму, например, получаю плохой результат МРТ. Я знаю, что мне нужно прийти домой, лечь в кроватку и посмотреть фильм, купить мороженое или торт или просто посидеть в социальной сети, отвлечься. У меня, конечно, есть хорошая поддержка в виде мужа и мамы, которые очень в теме. Я им могу доверить, особенно маме, что-то изучить или куда-нибудь меня записать. Когда у меня возникает жесткая ситуация, бывает, что я разделяю между мужем и мамой обязанности, а сама ложусь в кроватку.

Когда я уже болела, но еще не вела блог, моя мама решила, что нужно сделать какой-нибудь магазин, и мы решили открыть магазин небанальных рюкзаков. Мама их закупает и продает, а вся выручка идет мне на лечение. Выручка бывает разная: примерно от 20 до 80 тысяч. Иногда ноль или даже минус, зависит от месяца. Но все равно это очень помогает оплачивать дополнительные расходы: недорогие лекарства, приемы врачей, такси до больниц.

Я стараюсь сильно не наседать на людей: «Помогите, помогите». Я просто пишу: где-то про себя, где-то про свои мысли, где-то про полезные вещи, например, врачей, родинки. Я стараюсь вести страницы в соцсетях так, чтобы людям захотелось меня читать. Когда я пишу, что мне нужны деньги, люди с готовностью помогают. Без их поддержки просто никак.

Я каждый раз думаю, что нужно прекращать общение с девочками с меланомой, потому что очень тяжело, когда умирает знакомый тебе человек с таким же диагнозом, как у тебя. Но все равно понимаю, что не прекращу. Обычно знакомство начинается с того, что мы обсуждаем болезнь, лекарства, операции, врачей, больницы. Но иногда такое общение перерастает в настоящую дружбу. У нас есть чаты, группы, мы в них переписываемся, потому что это поддержка и с моей стороны, и с их.

Многие мне пишут в личные сообщения и просят выложить ссылку на их сбор денег на лечение, поэтому я придумала систему — каждую среду я выкладываю объявления «Вконтакте». Бывало, что я проводила точечные сборы и помогала девочкам с меланомой и лимфомой. Если я вижу, что какая-то серьезная ситуация, помогаю, разыгрываю свои картины. Год назад я помогала девочке, продавала свою картину, и собрала 100 тысяч. Картины я начала писать незадолго до того, как мне поставили диагноз, и это мне во многом помогло. Все-таки живопись — это определенный вид медитации. Я копировала знаменитых художников, писала пейзажи, но моим самым частым объектом было небо. В прошлом году я даже запланировала собственную выставку в художественной галерее в центре Петербурга, на которой должны были быть представлены мои работы с небом — от маленьких до огромных. У меня была расписана программа мероприятия: рассказ о себе, презентация работ, интервью с приглашенными экспертами, живая музыка, цветы, фуршет, общение с гостями. Уже были забронированы все места, но неожиданно все сорвалось из-за коронавируса. В итоге выставка не состоялась, но я не теряю надежды поправить свое самочувствие и все-таки организовать что-то подобное, только еще смелее и масштабнее. Надеюсь, у меня это получится.

Я стараюсь не перегружать людей грустными вещами. Я понимаю, что люди перестанут меня читать, если все будет очень плохо и грустно. Да, есть рак, но хочется нормальной жизни и нормального общения.