“The phrase “I understand you” irritates me the most”: an interview with a girl with lymphoma

Tanya works as an SMM manager, maintains her own blog and is being treated for cancer. She became ill with lymphoma a year and a half ago, and during this time her life has changed dramatically. And it's not only about appearance and daily routine, but also about how oncology has affected her relationships with family and friends.

Lifehacker asked Tanya to tell her story and give some advice on how to deal ethically and carefully with a seriously ill person.

“Don't worry! A month will pass, and the bump will be blown away ”- about how it all began

In the spring, during the quarantine of 2020, it seemed to me that I had a slightly asymmetrical neck. I looked in the mirror, asked my friends: “Listen, it seems to me, or is there something wrong with her?” But they answered: “Yes, everything is okay with her, you are cheating.” Then I decided: “Well, maybe I’m really cheating.” Although now I look at my old pictures of that time and understand that I didn’t wind myself up.

Then in August of that year I got sick sore throat (not sure if it really was her). And my neck is very broken. There was a huge bump on the right that didn't go away even after I took a course of antibiotics and finished the treatment.

She started to worry me a lot. Even then there were fears that it could be something serious.

I was told not to google the symptoms. Because everything on the internet always comes down to cancer. But it saved me.

In addition to the lump, there were other symptoms. My skin was constantly itchy. At night, I sweated a lot, even if it was -15 outside, and I had a window open. I quickly lost weight, although I ate a lot and did not change my diet in any way. These are all characteristics of lymphoma. So I immediately began to prepare for the worst. I think in this case hypochondria saved me. She gave me motivation to figure out what was happening to me.

I went to the clinic several times, but my district police officer just said: “Oh, don’t worry! A month will pass, and the bump will be blown away. But she didn't flinch.

A month later I went to another doctor. She looked at me with big eyes and said: “Well, I don’t know what to do with you… Go to the dentist, to the surgeon…”. This cycle of "I go to the therapist - the therapist doesn't know what to do with me" repeated itself several times.

Finally, I got to the surgeon, who sent me to ultrasound. And the woman suddenly became very wary. She told me: “Right now you leave me and go to a therapist. Not tomorrow, not next week. Right now".

With this conclusion, I again went to the therapist (already the third), and he suddenly began to scold me: “Why do you constantly go to different doctors? Why didn't you immediately go to the surgeon after the ultrasound? Why did you go back to the therapist?

This is where I got angry. I wanted to cry, but instead I replied sternly, “Please don't talk to me like I'm a child. I've been knocking around here for over a month now. Just give me a direction to where at least someone knows what to do with me. This sobered up the therapist a bit. And she went to the surgeon to consult with him.

She returned, gave me a referral to the Botkin hospital to a hematologist A doctor who specializes in the prevention, diagnosis and treatment of diseases of the blood and blood-forming organs. . It was already February.

"God, is it over?" - about how Tanya found out the diagnosis

At the Botkin hospital, I somehow made an appointment for an initial appointment. There are few doctors in this center, but many patients. When I went to hematologist, she asked: “Why weren’t you sent to me right away?” And I say, "I don't know."

She booked me in for a lymph node biopsy. This operation is performed in half a day in a day hospital under local anesthesia. That is, they did not even have to spend the night there.

When I was operated on, I smelled burnt skin, felt blood running down my back.

I had a panic attack right on the operating table. I lay and cried. The nurse asked, “Are you in pain? Let's get some more painkillers, shall we?" I replied: "I'm not hurt, I'm scared." But in the end, I came out of there with a beautiful straight neck and thought: “God, is it really over?”

I was told that in 10 days they would do immunohistochemistry, and it would be possible to come and collect the results. For your understanding, the laboratory is located in the morgue. Next to it is a temple. The weather is disgusting: it is raining, it is cold and windy outside. Entourage is what you need! And so I take this piece of paper, go out into the street, and start reading. The diagnosis is Hodgkin's lymphoma. Obviously, this is something not very good.

And this is where awareness begins to come. I go to Google, I read that this is a malignant disease of the lymphatic system. I start crying. I'm calling my mom. I call work and explain that I won't go out today. With results I go to a hematologist. The doctor does not smear snot, does not say: "Everything will be fine." Instead concludes: "Yes, it is crayfish. We will be treated."

“That’s when I had an abortion, no one supported me, and now everyone rushed to feel sorry for you” - about friends and relatives

My mother, like me, is a very emotional person. But she can, at the right time, pull herself together and become cold-blooded. That's why she never cried in front of me. Although I think it was harder for her. I'm afraid for myself, but my mother is afraid for her child. But she left pity out of my sight, for which I am very grateful to her.

Therefore, when the diagnosis became known, we decided not to tell our relatives about it. I didn’t want to listen to how poor and unhappy I am - it definitely wouldn’t help. At first, only my friends, my mother and father, with whom they are divorced, knew about cancer.

I did not expect any support from my father. Because in all critical situations he took position of the victim, they say, what is it all for him? The only thing I asked him was not to tell Grandpa.

But in the end, he told him everything. Then he tried to justify himself that I had not come to them for too long. But grandfather is a strong uncle. He began to help in any way he could: he brought food, repaired something at home, asked how I was doing, gave money. I sabotaged this help at first. But then, after talking with a psychologist, I realized: if someone offers you something, it means that he can and wants to do it.

You don't have to think for others. No need to feel sorry for those who are "unfortunate to mess with you."

Grandma, we also did not immediately say. Ten years ago, she had a stroke, and we were afraid that this news would negatively affect her health. In addition, she was abroad for six months. We wanted to wait for her and act according to the situation.

But she also knew. And not from me either. She has a friend who was in the know thanks to my grandfather. And at some point, this friend wrote to her grandmother: “Well, how is Tanya? How is her chemotherapy?

Grandmother immediately forwarded this message to mom: “What chemotherapy?” I had to explain everything to her. But she, by the way, on the contrary tried to ignore my illness. I didn't mind - it's even easier. If I needed to be pitied, I knew who to go to for it.

I shared the news with friends and, at the same time, roommates on the very first day when I found out the diagnosis. Due to the fact that at that moment I had not yet had time to comprehend everything and calm down, my story turned out to be semi-hysterical.

Then one of them said that she was not ready to "ride the emotional swing." And then she added: “That’s when I had an abortion, no one supported me, and now everyone rushed to feel sorry for you.” We've had several big quarrels. I asked her to move out since she lived in my apartment.

After that, she posted correspondence and details of our stay with her on her blog. Yes, we were not particularly friendly, but there were good moments. And she presented the story in selective fragments. I didn't like it very much. But I was glad to see that many in the comments under her post supported me and even interceded.

This situation did not let me go for a long time. I was already in a vulnerable state, and here another person, a microblogger, also puts up a public post about what shit I am and what shit my diagnosis is. As it turned out, after that she began to unsubscribe, and many brands refused to work with her.

At the same moment, I was trying to figure out what to do with my studies and work. The issue was resolved quickly with the university. The dean's office was very worried about me. I didn't even have to take a sabbatical. The administrators said that they just needed to keep the teachers up to date and send them completed assignments if possible. And usually they really went forward.

They also supported me at work. The boss is a year older than my dad, and he probably took my diagnosis as if his daughter were sick. Said, “Please take sick leave. Heal and get well! Don't worry, nobody's working for you dismiss will not be. We'll decide everything."

“I slept 20 hours a day” - about treatment and money

Soon I began to worry about the money issue. It seemed to me that the treatment would be very expensive. For example, the cost of PET/CT Positron emission tomography. , which the hematologist told me to do, starts at 40,000 rubles. In addition, it was necessary to constantly take analyzes. For some had to lay out a tidy sum.

But in parallel, I met the head of my clinic and said: “If I can’t go through all examination quickly, I will file a complaint and, most likely, I will sue the doctor who stalled the treatment in the very beginning. So it's in your best interest to help me." She turned out to be a decent woman. Issued the necessary referrals for blood tests and echocardiography. All this was done in one day.

When I came to the doctor with the results, I supposedly had stage 2 cancer, and they wanted to put me on an ABVD treatment protocol. But PET/CT revealed two more lesions: in the spleen and in the chest. The doctor sent me back for a biopsy. Because if these formations turned out to be malignant, then this would already be the fourth stage, and I would have to be treated differently.

Everything turned out to be in order with the mammary gland, but the spleen let us down. On June 2, 2020, I was given the third stage and chose the BEACOPP-14 protocol. I could start treatment.

The doctor immediately told me: “You will be bald. Buy a wig. I asked: “Are you sure I will?” “200%,” she replied. Then I decided to shave immediately.

In total, people gave me about 50,000 rubles. But then it turned out that I can go through all the procedures and get medicines for free - according to CHI.

I was prescribed seven extremely aggressive drugs. And they had a lot of side effects - it's terribly scary. There are not only chemicals that are diluted and injected intravenously. There are also hormones. And a bunch of drugs that should protect the heart and stomach. There was also a laxative so that the decay products would not stagnate and the decayed tumor would come out normally. I was able to get all these medicines at the pharmacy with a coupon.

And the money that was thrown off to me, I spent on related expenses: taxis, food, classes with a psychologist. I had to go to the hospital three times a week. But I couldn't use public transport in the conditions of COVID-19 - that would have been suicidal. After all, all drugs against cancer cause the wildest drop in immunity. Therefore, I had to get to the center only by taxi - it took about 15,000 rubles a month.

Besides, at that time I could no longer work. When you're drugged, you feel like you're drunk. You are very swollen. Nothing is strong enough. I slept 20 hours a day instead of 10. Most of the time I spent in a horizontal position. If I got up, I started to feel sick.

In the days when stimulants were pricked leukocytesI had severe bone pain. I literally felt every one of them, every joint of my body. I ate handfuls of painkillers so that the pain at least slightly receded.

I used to think that there was nothing worse than menstrual pain. It turns out it happens.

People who manage to work during “chemistry” are just heroes. I couldn't do that. Therefore, I am very grateful to everyone who helped with money! It will sound trite, but in such a situation, every 10, 50, 100 rubles matters. This money helped me to live while I was being treated.

“It is important to maintain a positive attitude” - on psychotherapy and support groups

Before getting sick, I thought: "If I get cancer, I will not be treated and I will die." But then, when I encountered this, I realized that I actually don’t really want to die.

My mental state at that moment was very unstable. I read a lot of scientific studies about this: such a diagnosis in psychology is considered a trauma, and specialists are of the opinion that leaving a cancer patient without psychological help means leading him to death.

I had psychologist. Before that, I studied with her for six months and at one of the sessions I just brought new sad news. She began to work with me in this direction.

During the treatment, I encountered completely different feelings. For example, she wanted to sabotage him - not to go to the hospital, even if it was necessary. And towards the end of the treatment, flashbacks began. When I started thinking about drugs or reading side effects to them, I started to feel sick. At the snap of your fingers.

I think cancerophobia influenced my mental state in many ways. Fear of getting cancer. common in our society. It's like with planes: they fly every day, but they don't tell us about those that landed successfully, they only tell us about those that crashed.

It is the same with oncology: there is very little information in the media about how someone was cured. Because of this, perception is disturbed. You think cancer equals death. Although this is absolutely not true. Five-year survival A five-year survival rate is a characteristic that means that within five years after the end of treatment, a person will go into remission and will not die from cancer. with lymphoma is very good - about 90%.

But, roughly speaking, any person with oncology will never recover. Going into remission, he lives on a powder keg.

First, PET / CT should be done every three months, then every six months, and then every year. And that's what scares me a lot more than death.

For example, in August 2021, I was told that the treatment was over, but a second examination showed that I did not go into any remission. I still have a lesion in my neck, which was not affected by two courses of chemo. It didn't increase, but it didn't decrease either.

The doctor said, "You have a very indolent lymphoma." I answered: “Well, what a hostess, such a lymphoma.”

Now I have again suspended treatment and in January I will go for a second examination to determine whether I am in remission. I'm scared to think that everything can happen again. But I try to get those thoughts out of my head. In general, I try to live by the principle: I believe in the best, I prepare for the worst. Because if the news turns out bad, I will plus or minus mentally ready for this.

In addition to psychological consultations, chats and communities of cancer patients helped me a lot. I am a member of several: someone is in remission, someone is just starting to be treated. Usually all the basic information is there. And you can ask a question if something worries you: ask to share contacts, support, ask how some procedure goes.

There is very little information about this in the media. But even the one that is, rarely about lymphoma. She is the most invisible.

This was one of the reasons I decided to blog. After I started posting, a lot of people thanked me. Some said that they had recently been diagnosed, and thanks to my notes, they were at least able to imagine what awaited them.

The second reason is that the blog has become self-therapy for me. I realized that there I can speak out and tell what worries me. It was important for me to maintain a positive attitude. Because science knows cases when a person gave up, and the drugs really stopped working. It's probably like a placebo, only vice versa.

“My illness is a filter for the environment” - about returning to normal life

At the end of treatment it becomes difficult. At first you still have a strong body, you are inspired, ready to be treated, and then you get the feeling that the doctors are kicking the dead.

During all this time, I have accumulated fatigue from the treatment. For example, on the last dropper, I felt so bad that I ran straight to the toilet with it - it seemed that I would burst. And I hope that at the re-examination in January they will tell me that I am in remission.

Yes, returning to normal life will not be easy. I can't go for a massage, lean on fast food, do sport. I need to drink plenty of water, constantly monitor my blood counts, how my heart and lungs work.

Lymphoma has changed my attitude to life and to the people around me. In the beginning, when you first get sick, friends say that they will definitely be there, support you and do everything you ask. But in the process of treatment, you just watch how they fall off one by one and disappear from your life. I reacted to it this way: illness is a filter for the environment.

With those who did not pass it, I most likely will not initiate further communication. Why do I need friends who are ready to communicate with me only when everything is cool with me?

It may be difficult for some to be around seriously ill people, and, trying to protect themselves, they instinctively run away from this. Therefore, the main thing that I understood is that no one will take care of you better than yourself. Now I know what I can go through and some problems don't seem so bad.

"If you want to help ..." - about interacting with seriously ill people

1. Help with money. Maybe I'm talking too hard, but these messages "Everything will be fine, you can handle everything and blah blah blah" are good to hear a couple of times. But when 200 people watch your Instagram stories and everyone thinks it's important to comment on them, you get tired of it. These are empty words. Of course, I don’t have a negative attitude towards them, but I have a feeling that in this way a person is trying to relieve himself of guilt. As if he participated and helped me.

In fact, apart from transferring money and some kind of household assistance, you can’t really do anything for a seriously ill person. Probably, all people who are struggling with oncology sooner or later have the feeling that money is flowing down the drain.

That is why it is so important to support them financially. You can buy medicines, pay for tests or transportation, hire a nurse who will come and make injections.

2. Come visit and help clean up, wash the dishes, cook breakfast. In your eyes, this may seem like a very small help: “Just think, cook a meal! It's 15 minutes." But a person who cannot get out of bed will be extremely grateful to you, because along with this breakfast he will also eat pills. Basic household activities are very valuable. During the treatment, I did not even have the strength to pour myself water.

3. Learn some useful skills. Throughout the treatment, I really lacked people who know how to give injections. As a result, I had to drive the solution into my thigh with my shaking hands.

4. Advise good experts. For example, lawyers. Because the first bureaucratic pandemonium is to start treatment, and the second is to formalize disability. At one time, I did not have enough legal support. It turned out that I could apply for disability on the first day of treatment. But she did it when it was almost over. And so the money is lost.

5. Help the person with humor and company. For example, jokes about cancer don't annoy me at all. Of course, each individual person may have his own opinion on this matter, and it is better to ask just in case how he feels about them.

I was not offended when my friends joked like: “This is Tanya, she is a Sagittarius, but she has cancer.” Jokes make the disease not so scary and cheer up.

6. Don't let yourself smear the snot. This can be done at home, with a psychologist, with other people. I was annoyed when acquaintances came to me, we calmly chatted... And then they suddenly began to cry. Because of this, I felt guilty: they say, I make people uncomfortable.

It seems to me that this is some kind of parasitism on the disease. Because the patient finds himself in a situation where he is, as it were, obliged to pity the other person. It doesn't help at all. It's like you're being paid for in advance. I wanted to get away from it. I forced myself to control myself, to be impenetrable, not to let myself cry and say: “Everything will be fine!”

7. Don't try to identify with this experience. I was infuriated by the phrase: "I understand how hard it is for you." You do not understand! You didn’t lie under a dropper, you didn’t feel sick from it, you don’t know what it’s like when cancer changes your appearance beyond recognition.

After a three-hour drip, you look like you haven't slept in a week. And some at the same time allow themselves to say: “Listen, you look so bad for something.” And yes...

8. Do not study a person with your eyes and do not comment on his appearance. It's hard. Some people just can't stop staring and ignoring. In the summer, when it's +30 in Moscow, you don't wear a wig or a hat. That's why you have to go bald. Everyone is looking at you and you feel like a clown.

Therefore, for example, when I went to couples for the first time after treatment, I could not appear there without a wig. I decided it was better to sit and suffer from the heat than to be bald. And under the wig, the head sweats a lot!

9. Ask how the person feels, if they need something. For example, you can ask: “I noticed that you began to slip more often pessimistic thoughts. Is it so? I have one support group in mind. Do you want us to go there together?”

But it's important not to push. After all, these groups are not for everyone. During illness, many close in on themselves, it is easier for them to cope with this. Therefore, I think it makes sense to designate this moment as follows: “If you need any emergency help, please call me.”

10. Do not treat a cancer patient like a child, but do him a favor. The combination of diagnosis and medication, changed lifestyle and well-being deprive him of mental stability, and his life turns into an emotional swing. The disease makes him very vulnerable - it seems as if any thing in the world can break.

Therefore, when you quarrel with a person who is in the process of active treatment, this must be taken into account. Sometimes not everything he said corresponds to what he thinks in reality. Perhaps he was just hit in the head by hormones.

11. Let the person understand that he is much deeper and more interesting than his illness. At the end of the treatment, he may have a strange feeling that he does not remember his former self. A block may appear: "I am equal to my disease." And this is a very destructive statement. At some point, it began to seem to me that I had nothing more to say about myself.

Therefore, it is important for relatives to constantly remind the patient that in addition to the diagnosis, he also has his personal qualities, character, hobbies, experience. And when relatives communicate with a person who is being treated, one should try not to concentrate on the disease. You can give a person the opportunity to speak out, but you don’t need to make a bubble out of her: here is Tanya, she has cancer, she thinks about cancer, she can talk about cancer. Your loved one should not forget who he was before the illness.

During treatment, Tanya began taking courses in SMM, marketing, and began to blog. When the disease receded a little, this knowledge allowed her to get a new job. In January, she will have a second examination, at which she will find out if she has gone into remission.