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We asked Anton Buslov, a brave Hodgkin’s lymphoma fighter, to reach out to those who have just received a serious medical diagnosis. Read five practical tips from a person who knows everything about the disease.
“One friend once told me a story about an elderly couple: “Imagine, they died on the same day! Just like in a fairy tale! He felt bad with his heart, she went to another room for a pill, and there she already felt bad. The doctors said that they died at the same time – but none of them ever found out about the death of the other! Isn’t it wonderful?” I delicately replied that I prefer fairy tales in which the characters simply “lived happily ever after”, and then – the publisher’s data and circulation. But to face the truth, we have to admit that this is rarely the case. We are all alive, which means that even if death is still far away, then all sorts of current troubles (from a cold to being fired from work) will still happen to us. Personally, I was not very lucky with such troubles in my life: in 2010 I went to the doctors to treat a cold, and they decisively returned me to the real world, announcing the diagnosis of lymphoma (cancer of the lymphatic system).
I would still prefer a cold. But four years of treatment without money and connections, first in Russia and then in the USA (where I left after the Russian doctors said that there was nothing else to treat me), they taught me something. So I will try to share my experience with you. It will be great if you never need it … But what if you still have a serious medical diagnosis?
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1. Do not rush to rejoice
Once I had severe pain in my stomach. I couldn’t sleep. I agreed to voluntarily sign up for a gastroscopy! But the doctors started with a banal ultrasound of the abdominal cavity, and the doctor of the diagnostic department proudly wrote down in the map that she clearly sees the polyp inside, described its size and even attached pictures. And when the attending doctor began to describe to me the advantages of microsurgery, the thought crept into my head: how is it possible to cut when only one study was done? Then I myself signed up in another clinic for exactly the same ultrasound. The study was carried out on the same day and no polyp was found – although I really asked to look for it. The doctor abruptly changed tactics, did not talk about any more operations, and after a week the pills completely put me on my feet.
Another case. A friend was in the hospital, she had an ultrasound of the ovaries “for company”, while they were watching something else … In conclusion, they wrote a suspicion of cancer. Do you think she went with this case to an oncologist? Or at least to a specialized center that can correctly diagnose cancer? .. No – she went to a bar, did not leave there for a week and did not tell anyone what was wrong with her. I was tormented by the question for a long time – what is the point in these actions? Well, let cancer – so it can be treated, there are a lot of methods. And if it’s not cancer, then even in a bar it’s more pleasant to spoil the liver, having double-checked and knowing that there is no cancer. Yes, as a result, she did not have oncology …
I say this only because the correct diagnosis is a great success. And from it you can immediately proceed to treatment. But in order for you to have an accurate, reliable, competent diagnosis, you will have to sweat. You should not think that if someone in a white coat said something, then he knows better … And do not forget that there are three opinions for two doctors, and with a banal headache, the urologist will start treating your kidneys, the nutritionist – the stomach, and the oncologist – crayfish.
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2. When choosing a doctor, you choose a diagnosis
As dire as the diagnosis may be, you will need to find a doctor who understands the subject, is able to make a comprehensive diagnosis, and whose thoughts and ideas you respect and follow. This is your duty as a patient – no one will do it for you. We are used to looking for our people: when we need, for example, a hairdresser, we find out from our friends where they go, where they do it better, who has what experience … Then we deal with the same specialist and even, sometimes, we dangle to him, if he moved. So, a good doctor is even more difficult than a good hairdresser.
In general, you know that hospitals and departments in them are divided into specializations: infectious disease, trauma, hematology, cardiology … So, the opinion of a cardiologist on leg injuries is of dubious value. He, of course, heard something in the medical institute and, if he didn’t skip, he most likely knows a little more on the topic than you … But rather than get hung up on his opinion, it’s better to read a good book and meet friends, cheer yourself up. Universal doctors are either urinotherapists or local therapists (forgive me, the latter – they are approximately equal in terms of qualifications to the former). Once, after a bone marrow transplant, I fell ill with a cold, was at home and called the district police officer. To be honest, I needed a sick leave, I already made up a treatment for myself based on my previous experience of being in the oncohematology department and coordinated it with professional doctors in this field by phone. But I decided to joke a little and answered all the questions of the district police officer like an honest patient: fever, cough … When we reached the “post-transplant state”, the doctor replied: “I absolutely don’t know what to do with you.” Then I suggested to him: “Give me a sick leave, and I will take these pills … And also give me an empty form for hospitalization by ambulance, I will fill it out myself if necessary.” After listening to all this, the doctor soared over the stool – such a burden of responsibility from his shoulders. I was only surprised at the end: “Are you still working?! I thought you were on disability…”
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3. Not only treatment is important
I work all the time while I’m treating cancer. I had two bone marrow transplants (my own and donor cells), I was in intensive care and in a coma. For all four years I did not work for exactly one week – for a good reason: I lay unconscious and everyone thought that I was about to die. When I was diagnosed, I looked up how much the treatment costs and told my girlfriend, “I’m going to have to find a couple more part-time jobs.” The fact is that the salary of an astrophysicist … is not astronomical. But when I left for the USA for treatment, I had three permanent jobs. Illness is unpleasant and obviously will not make your life easier. It will take both time and resources. But this is absolutely no reason to throw everything else out of life, and even more so such an important matter as work. Work in the broad sense is not only one that pays a penny twice a month, work as a benefit to others. If you benefit people, then you have every right to turn to them for help.
4. You are not in the desert
A lot of people, having received a diagnosis, withdraw into themselves and do not say anything about it to anyone. For me, this is a whim. Worse is the situation in which relatives learn the diagnosis from the doctor and the whole team hides it from the patient (ah-ah, he will not endure such a nuisance!). I don’t even want to discuss the latter: these people want a person to spend, perhaps, his last years or months without understanding what is happening, in a sweet lie. Disgusting. Of course, a diagnosis is not a flag, not a merit, and not a reason for pride. There is no need to hang it up or wave it (after all, to be honest, few people are really interested in it except you). But hide it?
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After I was declared incurable in Russia, I was invited to work by the director of the City Projects Foundation, who knew me exclusively as a specialist in transport and the urban environment. At the very first interview, I honestly told him that the doctors set me a survival period of 1,5–2 years, I needed periodic urgent hospitalizations, and therefore I could not take on long-term projects and projects with very tight deadlines. I didn’t have the slightest doubt whether to talk about it or not. The director, on the other hand, must plan, manage personnel and projects … And I cannot let down a team of good people – I have no reason and no right to do this.
Of course, there is no need to spread panic and throw yourself in tears on everyone’s chest after the next news. I had a week when doctors constantly changed their readings to the exact opposite: “morgue – everything is fine / morgue – everything is fine.” And I did not call my relatives after the next news (the phone also costs money). But if someone asked: “Where are you and how?” – I honestly answered: in the hospital, the doctors are in a panic, in a couple of days the tests will come and it will be clearer.
Don’t get me wrong, I’m not advocating for your personal life to be flaunted or portrayed as a history of overcoming adversity. I’m all for basic honesty. If you honestly tell people about yourself and what is in your life, then you can quite reasonably count on their kind attitude towards you and, perhaps, even help in a critical situation.
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5. Difficult problems are solved together
At that moment, when the situation with the treatment became critical and it was necessary to urgently change tactics, clinic and country … I was still an astrophysicist, without connections and any kind of fame. I had to find 150 thousand dollars very quickly, just not to die within a couple of months. This is a big task, but it just so happened that before that I solved other big problems – I built a spacecraft control system, prepared a strategy for reforming the transport system of a million city. And I have always clearly understood that big tasks are solved not by loners, but by like-minded people. We know Gagarin and Korolev, but few people can remember the names of those who carried out a manned flight into space. But tens of thousands of people worked on this project, the contribution of each of them was critical for a successful flight.
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When something serious is being treated in the USA, a team works on it. Decisions are made by this very “team”, and not by your main doctor. This team has many different people, but without any of them it will not be complete and effective. A social worker, an oncologist, a transplantologist, a financier, a manager – this is from the side of the clinic. There are also those who support the patient – relatives, those who directly care for him, help close financial documents if there is no insurance company. And of course, the team includes the patient himself, his opinion, his active attitude to success. For successful treatment, I had the opportunity to assemble an excellent, simply fantastic team of people – there are about 30 thousand people in it, who agreed to help me and become my friends. These are very different people. Someone helped with money, and someone wrote a couple of kind words. When it was really really hard for me – I just came out of a coma and my eyes were not seen, I asked my wife to read to me the comments of people left under the fundraising post. She read and we both rejoiced. We rejoiced at this excellent project common to an incredible number of people, the happy ending of which was then still in the haze of the future. I had a transplant. I had all possible tests done. No lymphoma was found in the body. This is my first time in remission. Yes, I have a big debt to the clinic – as much as 380 thousand dollars, but 130 of them have already been collected in just a week. Believe me: the problem is when the medicine has not yet been invented, there are no methods of treatment, or the patient does not have a sane and sober approach to life. Here is the problem. And the ocean of money is something that can be collected drop by drop. There would be friends who are ready one day to give up a cup of morning coffee in a cafe.