Paweł was 33 years old when he heard the diagnosis. The year was 2022, he had a 4.5-year-old son at the time, and his wife was pregnant with a second child. "I felt a bit like a comedy hero," says Paweł, telling his story to the authors of the book "Tame Cancer. Inspirational stories and a guide to emotions ", published by Znak Horyzont, 2022.
The book was written by Agnieszka Witkowicz-Matolicz - a journalist, reporter and sociologist, who herself, at the age of 32, fell ill with breast cancer, and Adrianna Sobol - a psycho-oncologist and lecturer at the Medical University of Warsaw in the Department of Oncological Prevention.
As the title suggests, this item was created for oncological patients and their relatives. Taming the topic of disease, the vision of death and experiencing many extreme, difficult emotions is an indispensable element of the struggle with cancer. Two wonderful women decided not only to prepare a guide, but also to include inspiring stories of patients who have experienced cancer.
This is the beginning of Paweł's story
“I only have images of despair in my head, children not understanding why dad suddenly disappeared, a crying wife. Besides, I see a void. The black that appears before my eyes in moments of absolute panic. Is it anxiety attacks? From now on, I have been taking my acid reflux medication for four weeks. After this time, it remains to be seen if very bad assumptions are confirmed. So I have to wait for a month, and I can't stand still. If I can survive, it will only be a miracle. "
In a month, Paweł's wife was going to give birth, she was enduring the pregnancy with difficulty, and he just wanted to be with her. It was not easy when the darkest scenarios were born in my head and Paweł was left alone with it all. It was his conscious decision, he didn't want to worry his wife and relatives, he decided to wait until he knew for sure.
The disease appeared in the seemingly best period of Paweł's life
Paweł was less than a year after changing his job, he faced new challenges, he was comfortable with his new duties, he felt that everything was going perfectly.
“I was happy in my relationship, I had a brilliant son, great job, Basia was pregnant, the second child was due to be born soon. It bothered me, howeverthe fact that I had difficulty swallowing food for a long time. At first, it felt like there was a wound in the upper part of my esophagus that I felt when it came into contact with food.
Later it started to hurt more, even after swallowing the water. I felt that whatever was sitting there was growing slowly but steadily. Sometimes I thought it was an allergy, sometimes I imagined cancer, and then I was really scared.
Reason was not very reasonable, because in the end it told me that at my age it could not be anything serious. Nevertheless, I was looking for a diagnosis until the end, because doctors still haven't found an answer. They suggested allergies, sick sinuses and, of course, psychosomatic pains …
Today I would approach this process differently, I feel like a veteran in this matter. We must be aware that you can come to the doctor and wait for what will happen, or you can go consciously with certain expectations. For example, internists treated me several times with antibiotics, instead of sending me to the gastroenterologist, and after every visit I complained of pain when swallowing.
You have to remember that there are also specialists in each of the medical fields. If I had foot pains today, I would expect an internist to send me to an orthopedist, since he is unable to diagnose himself. You have to feel and assess whether you trust the doctor.
If he had not referred me to an orthopedist, I would clearly say that I expect it. Back to the bottom line, the esophagus specialist is a gastroenterologist. I didn't know it at the time, so I was treated for months with antibiotics, alternating with antiallergic drugs, and convinced that my sinus discharge was running down, irritating the mucosa. It went on forever. "
"You have to apply the principle of limited trust"
Paweł's story shows that the patient should not fully trust doctors, it is also worth listening to your body, looking for and acting on your own, fighting for your own.
“You have to apply the principle of limited trust. This means: trusting doctors, but participating in the process. The patient cannot afford the comfort of inactivity. The doctor is not there to look after and guide the sick, not in this world. Although this should be the case, the reality paints a different picture of the he alth service and I advise you to find yourself in the situation without any pretensions. If the matter eludes the interior, let's look for a medical specialization responsible for the part of the body that hurts us. An internist has his own scope of competence, but he cannot always help effectively, especially in very unclear cases. "
Paweł started his search onon his own, visited over a dozen doctor's offices.
“At the gastroenterologist, I heard that I need to do a gastroscopy to start with, without it. The visit lasted two minutes. This study was not a very pleasant experience, at that time I did not know that I would receive this honor a dozen more times in the next months.
"We are afraid of serious illness"
The extensive diagnostic description of the examination mentioned inflammation in various parts of my bowel, but I did not find any information that this was something deeply disturbing.
However, an interpreting gastroenterologist noticed them. He read the description aloud three times, very slowly and clearly. It baffled and alarmed me, because I expected him to look at it, announce it was reflux, prescribe magic pills, and say it would be all right. Instead, I heard "We are afraid of a serious disease, esophageal cancer."
Doctors still do not know why Paweł fell ill
In this way, Paweł's world spun again. A man aged 33 with a child at home and another one on the way is en titled to fatigue, stress and eating errors, but… cancer?
“I don't remember much of the moment, I probably felt weakness and a shiver going from the top of my head to the tips of my toes. As if my brain is slowing down, the processor is stuck, there is no virtual memory. It was a shock, although I cannot say unexpected. Earlier, I had reacted very emotionally to information that someone I knew or my acquaintance had contracted cancer.
"When one of my coworkers' wife was battling cancer, I couldn't sleep. Like I felt like I would be next"
I had some ghastly connection to these cases. I was afraid of cancer subcutaneously and did not rule out its diagnosis in the course of my medical adventures, but I tried to rationalize the situation.
The statistics were in my favor. I was young, he althy, no one in my family had any form of cancer. The gastrologist asked how old I was. "Thirty-three". “You don't look like you are drinking vodka every day. Do you smoke cigarettes? " "Come on." "How much do you smoke daily?" "Average six cigarettes." "Come on, this can't be it." This was the reaction of the doctor who got involved and wondered how to help me. He said it looked to him like eosinophilic esophagitis that is treated with steroids. However, before starting such treatment, he will prescribe medication for acid reflux and refer me to another gastroscopy in a month.
Shortly after leaving my office, I picked up the phone and committed fatala mistake everyone seems to be making. I googled "esophageal cancer". I learned right away that with such a diagnosis, only five percent of patients survive for two years.
With this information, I got into the car. I was in a state that I have never experienced in my life, as if I had fallen into a black space without a bottom, I felt that I was falling deep into a dark, overwhelming emptiness. With this unimaginable fear I went home to my pregnant wife. I didn't know yet what I want to say, how, to whom, when.
I did not want to build anxiety and panic, especially since the doctor, after a lot of scaring me, said: "The probability is small." I didn't want my wife to feel a tenth of the fear that I had. I was left alone with him. Those were very difficult days. "
Alone with a black script
Paweł decided not to tell his wife about what he heard in the gastroenterologist's office. He admits he was nervous when he thought about having to wait another month for another test.
“After a month I had a second gastroscopy, the doctor who conducted the examination said I look worse inside than before. I asked if it looked like cancer. She said it wasn't because I don't have so-called esophageal infiltrates, the penultimate grade. To my hectic question, "Doctor, do I have cancer?" he replied that there was no tumor in the test report yet. He explained that this is inflammation that leads to cancer, but no cancer cells were found at this stage.
I left the clinic with this result in my hand and I had no idea what to do, how do I feel, who to talk to, what doctor to see … I was wondering if I had three months to live in front of me or will I be among the lucky handful, in the five percent of those who survive for two years from diagnosis. Not knowing what to do next, I just started acting. Step by step. I took out my phone. I wanted to see my gastroenterologist as soon as possible. That day he did not see patients at the clinic I used to go to.
I went on googling, called one clinic, and it was said that the doctor hadn't worked there for a long time. In the next, they wanted to sign me up for the next week. Normally I would be happy to have such a close deadline, but I felt I had to see this doctor immediately, otherwise I would die here and now.
"I felt like in a movie, just wish it was a horror movie"
I thought that if I can't find him in any clinic that day, maybe he works in some hospital. On the internet, I came across an article where it was cited asspecialist in one of the clinics in Warsaw. Without thinking much, I got in the car and drove all over Warsaw, from distant Praga to Ochota.
I paraded into this huge hospital and started looking around, thinking what to do next. I went to one, the second, the third window, no one could help me. Eventually someone said he didn't know my doctor but pointed out where gastroenterology was and advised to ask there. I took the elevator, walked along a long corridor, all paneled, like in the movie Gods or The Art of Loving.
Silence, there is no living soul. Suddenly I noticed the door of one of the rooms ajar. I looked, and there are three men in smocks sitting there drinking coffee. One of them is my doctor! It felt like a movie. I write it myself in real time, I direct and play the lead role. All in all, it's a pity it's a horror movie "
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How long does gastroscopy take and how to prepare for it? We explainThanks to determination and a lot of luck, Paweł managed to find a doctor.
“He said it was serious, but there is no cancer in this study. Yes, it is a condition that leads to cancer, but this is not yet the stage. I felt calmer. The doctor added that it had to be cut and that he had to think about where to send me so that they would do it for me quickly and efficiently. He looked at the window in silence. Finally, he searched for someone in his contacts on the phone. “Hi Michał, I have to ask you for another favor. I have such a young man here, thirty-three years old, I read you the description of the study (…) And so I ended up at the Cancer Prevention Center at the National Institute of Oncology in Warsaw.
I naively believed that maybe they would cut my lesion with a laser right away and it would be over. The reality, however, was not so rosy. During the first visit, the professor did a gastroscopy for me. He wanted to see for himself what's so wonderful inside. It was a long and painful examination. It turned out that the lesion was at the worst possible, tightest spot in the esophagus. Due to this location, it was difficult to see it closely, the examination was bloody painful, and any surgical intervention was backbreaking due to the lack of space. The professor looked at the change for a long time, tears were flowing from me, a nightmare …
At one point he put his hand on my shoulder. This gesture, not a medical one but a caring one, made me immediately feel better. It was completely unexpected and extremely soothing. I felt as if someone had just taken care of me. I wasn't alone for a while. The professor was assisted in this gastroscopy by a doctor who was doing itme the first two tests.
Talso a coincidence, because she came to the Oncology Center that day with her mother as an accompanying person. We met in the corridor, she recognized me and asked for the results. I said that it must have turned out poorly and that's why I'm here … She participated in my gastroscopy, looked at everything on the screen and consulted the professor. At one point, she said these changes were unusual. And that was the only time, and I already know the professor quite well, when I heard a slight irritation in his voice. "Really? Unusual ?! " Then I realized that he was seeing cancer that for some reason she had not noticed. I tried not to throw up from the pain and terror.
After the examination, the doctor sat down in front of me, rested his elbows on his knees, and announced straightforwardly. “Sir, we need to say it now. The changes are disturbing, it could be cancer. It has to be cut. On the other hand, the tomography shows that you also have enlarged lymph nodes.
"There is a risk that these are metastases"
I told him I consulted the nodes with three pulmonologists and they all said it looked like sarcoidosis. He calmly explained that if it was not sarcoidosis, instead of an endoscopic surgery (from the inside), he would have to have my entire neck and mediastinum operated on. This is a very high-risk procedure, and if successful at all, the patient cannot even swallow saliva for the rest of his life. He has a tube and cannot eat normally "
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Do you ignore the symptoms of reflux? If left untreated, it can lead to esophageal cancerIn this way, Paweł, who thought it was nothing serious a moment ago, now heard that it could be cancer that metastasizes. The treatment suggested by the doctor was not the easiest one, and in the event of failure, Paweł was faced with the specter of eating problems, which had a real impact on the rest of his further life.
“I came to the conclusion that at some point I have to trust someone because my life is at stake. And I trusted Professor Michał Kamiński from the Oncology Center, even though he also drew a dark scenario for me. This is the happiness I mentioned earlier. In my understanding, you get to such people only through good acquaintances, and I came across it thanks to the selfless commitment of my gastroenterologist, my own determination and thanks to great luck.
The professor said that before deciding on the further path of my treatment, the samples from the nodes had to be examined. He arranged this examination for me very quickly. My first hospital stay in my life had begun. It wasn't that bad anyway. After a day my existencewaiting for the result was determined again, and as I react to anxiety with action, a few days before the date of the results declared by the doctors, I quit my work, got in the car and went to the Oncology Center (…)
Diagnosis: Sarcoidosis
Do you already know the test results? ”. "No one has called me yet," I replied. “There is sarcoidosis. We can act endoscopically, not surgically. " I remember this relief and happiness. I was like crazy to have sarcoidosis! The professor started making an appointment, I had time only for myself, the only thing missing was a promenade like in Ciechocinek. But let's get back to the operation. I went for her in a good mood. I knew they wouldn't cut me from the outside, and if it went well, I would be able to swallow again in a while. It will probably hurt at first, but there was "almost" full he alth on the horizon. This "almost" was enough for me. After all, I was afraid of much more serious repercussions "
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Gastrologist - what does he do? What diseases does it cure?At this stage, Paul decided to tell his wife about a serious change in the esophagus that could lead to cancer. They both breathed a sigh of relief because they already knew what they were dealing with.
After the surgery, Paweł heard that it was successful
“At first I was barely alive. The nurse asked if I wanted the duck, which of course was an incentive for the novice patient to joke. I asked her to help me get to the toilet though. But she insisted on this duck. She came up with a brisk step, uncovered my quilt on the run, and I was so shocked that I just said: "You know what, but I missed it." After some time another doctor came and said that the operation the professor had performed was an "act of heroism" that lasted five hours!
The procedure was watched by several doctors, even an instructional video was recorded. The professor inserted an endoscope with knives into my esophagus. Slowly, millimeter by millimeter, he made his way through the mucosa and the submucosa. He made a tunnel along the esophagus and then rings around its entire circumference. Then he replaced the blades with tongs and began to tear the mucosa away.
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Let me just add that the machine breathed for me during the treatment. AfterI was able to go home for two days and a large chunk of my body was sent for an examination that lasted over a month. "
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Are gastroenterological examinations painful? The gastrologist answers [VIDEO]A day after leaving the hospital, Paweł had a daughter
After a few days, the girls returned home from the hospital. The man then had a serious wound, he was on a liquid diet.
“After a few weeks, when I was feeling much better and working normally, the professor called me. He said that most of the collected material was already tested and there was no cancer in it. Histopathologists only have to look at one more cup, and there is a certain risk that cancer cells have found their way there.
If this is confirmed, you will have to think about the next steps. I still lived in limbo, it was not easy, especially since little Wanda was already in the house. I remember being in a business meeting when the professor called again. He had no good news, cancer cells were found in the sample. Further treatment was to be decided by the council - a professor, oncologist, radiologist and other specialists. This is how the second season of my talks began, which could already be openly called "the fight against cancer". I always perversely say that before I found out about cancer, I didn't have it anymore, because I got the results after the surgery, in which the entire lesion was removed.
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Sarcoidosis - diagnosis. Tests for sarcoidosis(…) the cancer cells are already deeply embedded in my tissues. Therefore, the risk of metastasis is set at twenty-five percent. The council decided that radiochemotherapy was the best route at this stage. I saw this name for the first time. It consists in giving the patient chemistry to sensitize the cells to radiation.
It is radiation therapy that is key here. The professor outlined the therapy in such a way that it did not seem terrible, the patients did not go bald or vomit after it. On the other hand, the oncologist-radiologist scared me "a little" more. She said that early-stage esophageal cancer is treated the same as patients with very advanced disease, and it won't be a piece of cake. But she also gave statistics.
As a result of treatment, the risk of metastasis is reduced by at least a half. I began to calculate that this meant a drop from twenty-five to a maximum of twelve and a half percent, and could be even less. I immediately confirmed that I agree to the proposed treatment. One of the side effects of radiation therapy was to be a drastic narrowing of the esophagus, making it impossible to eat and drink, evenwater.
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"Cancer Shamans"
Paweł decided to take care of himself. At the same time, he also learned about the existence of what he called "cancer shamans" - psycho-oncologists.
“The psychologist I came across prepared me for what was coming. She explained a lot of technical matters that the doctors did not talk about and announced how I and my loved ones can feel in this process. This is extremely valuable knowledge and support that patients either do not seek or are afraid of, similar to classic psychotherapy. Even though I had the support, I now realize that at times it was hard. Nevertheless, even in the most difficult moments, during chemotherapy, I thought that I would be he althy, and I treated it all as a new experience in a way.
I watched doctors, nurses, other patients, which is an unusual, exotic experience for a guy my age. I felt what it was like to function on the verge of life and death. I would not experience these aspects of reality in any other way. I do not wish anyone to get to know them, but since I have already stepped into this world, I have become its careful observer. Thanks to this, today I am a different person, it is different in my life "
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Psychologist: how is the first visit? Psychologist, psychiatrist and psychotherapist …Paweł endured chemistry and radiation well. Unfortunately, there came a time when the feeling of well-being worsened and extreme fatigue ensued.
“After they let me out, I went to irradiation every day for four weeks. I slipped out of the pattern again, because I felt surprisingly good. I could even drive the car myself, except that I had to sleep during the day. Therefore, after the next weeks, there was no need to put me in the hospital. I got day chemistry. They put these drips on for me, gave me a fanny pack that I tied around my waist, and I went with him for a few days. I went to disconnect on Sunday and my treatment has now ended.
Then I thought it wasn't all as terrible as I imagined. I was toldthat I would be half alive, that I would not plan anything but concentrate on convalescence. And I felt a bit tired during the treatment, I lay down a lot, but it wasn't too bad. The next day I went for a long walk to the Cietrzewia Park in Warsaw. I took a few photos, which I put on the Doby Facebook profile in Sanatorium. I wrote: "The first day without chemicals, three hundred meters from home, feeling positive." It was a sunny September morning, twenty-two degrees. A day later it started - everything hurt me, I also got insomnia.
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Oncologist: what he does and what diseases the oncology specialist treats …The morning was the same every day, I sat on the couch, lowered my head and spent forty minutes staring between my feet. Only later I was able to somehow get along. For two months I took almost wholesale amounts of painkillers. I was afraid I would get addicted to them or blow my stomach, but there was simply no other option. For this exhausting drooling, day and night, and the whole skin of the neck burned with radiation "
Painkillers through a tube or injections injected directly into the stomach - this is how Paweł de alt with the situation. It turned out that the effects of the treatment appeared only after the end of the treatment, and they lasted two months.
“I couldn't even drink a sip of water, couldn't swallow, couldn't sleep. I started taking sleeping pills. One night I awoke from sleep, gasping for breath. I choked on my own saliva. I thought it was some giggle of fate. Cancer didn't kill me, my own saliva will kill me.
In December, the doctor recommended a gradual reduction of painkillers, especially as I wanted to return to work. I decided to take a radical step. The next day after the visit, I just didn't take any painkiller. To this day, I don't know if my well-being actually improved with these drugs or if the change was due to the schedule of the day, because when I stopped taking them, I felt exactly the same as when I took them. Awful in the morning and in the evening, quite well during the day. After a few days, my pain stopped and I started to function normally. The only inconvenience was that tube in the abdomen, which was practically and symbolically problematic "
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A neuroma is a tumor of the nervous system. Symptoms and treatment of neuroblastomaPaweł returned to work where he met with empathy from his colleagues. He admits that his optimistic attitude helped him get through this difficult time. When asked what he would say to a "freshman" whose cancer story is yet to comestarts, replied:
“The most important thing: do not get knowledge from the internet. If someone has a headache and goesogle "headache", one of the reasons is brain cancer. If someone's left buttock hurts, he will jump out that they may have fallen and have a bruised butt, or that this is a signal of a cancer process.
Of course there will be ten other possibilities, but the reader will stick to the worst anyway. While it's hard to stop, it's really not worth betting on Dr. Google. He's the worst doctor in the world. It's best to forget about it at all, because we will live in fear, anxiety and paranoia. The second important thing - it is worth being an aware patient and remembering about specialists. You have to choose a doctor who inspires confidence in us.
Although we are fighting for the body, it will be very difficult without a strong psyche. You have to take care of it. Basic matters include visiting a psycho-oncologist and a psychiatrist. I emphasize it very emphatically, thanks to them it is much easier for patients to go through the disease.
We cannot let our fears prevent us from reaching for the help available. It is also worth, especially during therapy, to talk about what can happen at work and how to behave in the face of these events … "
Paweł can eat normally, but after about 4 weeks his esophagus becomes constricted. Then he must undergo an expansion procedure.
“Besides, it's pretty much back to normal, but I'm much less afraid of things. I used to think that going to the gym was a terrible embarrassment, now I exercise regularly, I started to dress the way I always wanted, and I don't care too much about the stereotype that only beetroot wears signet rings.
We all put things off until later, I just stopped doing it. I act. A month ago, at the age of thirty-four, I started skateboarding. Friends laugh that I have experience in hospitals, so if necessary, I can easily find myself at the SOR. I do not care. There will be what will be, and I am going to do what I want to do. And that is the blessing of this cancer. Raku, thank you very much for that. "
Fragments of the story come from the book "Tame cancer. Inspirational stories and a guide to emotions" by Agnieszka Witkowicz-Matolicz and Adrianna Sobol. Znak Horyzont Publishing House, 2022
Author
Marcelina Dzięciołowska Editor for many years associated with the medical industry. He specializes in he alth and an active lifestyle. A private passion for psychology inspires her to take up difficult topics in this field. Author of a series of interviews in the field of psycho-oncology, the aim of which isbuilding awareness and breaking stereotypes about cancer. He believes that the right mental attitude can work wonders, therefore he promotes professional knowledge based on consultations with specialists.