Every four hours, someone learns they have leukemia. Real Patient Stories

Alicja, suffering from leukemia, asked herself: does the treatment even make sense? And she imagined her own funeral. She even asked her husband not to dress their baby daughter in a black dress for the farewell ceremony. Now, after a successful bone marrow transplant, she and her friend want to publish a book.

1. At the time of the cruel diagnosis, Alice knew about leukemia that it was deadly and associated it with children without hair, who had sad eyes. During the many weeks of treatment, she was most troubled by the lack of closeness, hugs, and physical contact with another human being.
2. Kamil also caught leukemia right after graduation. During his treatment, he also fought sepsis, enteritis, and a bacterial infection. Herpes also entered the boy’s body. “I didn’t know my name,” she says
3. Patients often lack empathy on the part of medical staff. Question: “The thermometer has?” to this day, it rings in the ears of the co-author of the book. She was shocked that medics referred to the elderly as “grandma” or “grandfather”
4. You can find more such stories on the TvoiLokony home page

Every four hours, someone learns they have leukemia

Leukemia is a numerous group of malignant neoplasms of the haematopoietic system. It can be acute, chronic, myeloid or lymphatic. It is not always easy to recognize it, because the symptoms of the disease are not specific. In Poland, nearly two thousand bone marrow transplants are performed annually.

– In Poland, every four hours someone finds out that he has just contracted leukemia, i.e. a blood cancer. His life changes dramatically, just like the lives of those closest to him. This was the diagnosis my friend Alicja heard. She was then 30 years old and a little over one year old daughter Ola. Thanks to the bone marrow transplant, she overcame the disease. Now our dream is to publish a book that will bear witness to those who have been successfully cured. What problems did they face? How did their disease change? The lives of people with such an experience are not the same anymore. It is new – says Marzena Dembicka, co-author of the project «Bone marrow transplant and a new life. A book for the sick and their relatives ».

Cancer patients need support

Alicja Sadowska and Marzena Dembicka, in two years, described the stories of twenty people after bone marrow transplantation, and now they are collecting money to publish a book. They do not do it for profit.

– We want the book to be distributed free of charge to patients qualified for transplantation. We want it to be a signpost for those who are at the beginning of the road to recovery. Because they, like me during illness, face self-doubt and need support. In the available medical publications, I found too little humanity, the so-called “human factor”. And too few tips on how to communicate effectively. I lacked the ability to talk about needs, including those that were not satisfied. We want to change this with our book – emphasizes Alicja.

Leukemia? I have never even had a cold!

The heroes include 40-year-old Rafał, two years after the transplant.

– I was a policeman, exercised at the gym, practiced sports, never had a cold in my life, never got sick. At one point, I caught a virus that I couldn’t get rid of for three months. My wife sent me to research. They called the clinic and said the results were bad. It turned out to be acute myeloid leukemia and I was immediately admitted to the ward. Success? It was a hit on a donor who was found very quickly, in fact, even at the beginning, there were as many as three from Poland. Later, a woman from Germany was selected – says Rafał.

Alicja Sadowska and Marzenie Dembicka, the man admits that he had no time for anything before his illness. Today he says that you can’t expect too much from life, because you never know what will happen the next day.

Another patient, Wiesia, 50, with a diagnosis of aplastic anemia, also underwent a transplant. The marrow donated by the woman’s sister refused to accept. She doubted, especially since the leukemia was joined by sepsis. But her new marrow finally “moved”.

Or Kamil, 24-year-old. Shortly after graduating from high school, he set off on a bicycle trip to Venice. The route was distant, and Kamil was driving more and more difficult, he felt constantly tired. When he returned, it turned out that he had leukemia. The most difficult moment for the young man was the withdrawal of the first donor. It was a woman from Germany and it is unknown why she withdrew. There was another one willing to donate bone marrow, but the disease returned after a few months.

– I had sepsis, enteritis, clostridium bacteria. Methotrexate [an anticancer and immunosuppressive drug – ed. red] burned my intestines. I found myself on the operating table. During the operation I was without immunity, herpes entered my nervous system and it attacked my head. I didn’t know what my name was. If someone looked at it from the outside, they might ask: how did this guy manage to get through this? – he says.

Alicja: I couldn’t kiss my husband

Among the heroes of the book “Bone marrow transplant and new life” there is also Alicja Sadowska, who honestly talks about her fight against blood cancer.

The woman admits that when she tries to remember who she was before her illness, she sees a blurred image of a happy mother and wife, a professionally fulfilled woman who played sports. She was planning to change the flat. She led an ordinary family life until she was diagnosed in 2014.

All she knew about leukemia was that it was fatal, and she associated it with children without hair who had sad eyes.

“That was my painting,” he says. At that time, she did not realize that the treatment was also isolation for many weeks in the hematology ward. When it turned out that her brother could be a bone marrow donor, she considered it a miracle. And she began to treat treatment as a task that she simply had to do.

– At the time of the cell transplantation, I was very moved and happy. I had the feeling that it would only get better – he admits. She remembers, however, that she was most troubled by the lack of closeness, embrace, and physical contact with another human being.

Perhaps it was this lack of closeness that made Alice ask herself if the treatment made any sense at all. She imagined her own funeral. She even asked her husband not to wear black at the farewell ceremony.

– I had this visualization in my head: I look down at my funeral, my soul rises above the grave, and I wonder who came. It was amazing. I was wondering if old friends would come, maybe someone from work? It was obvious that they would be close. I also wondered who would cry and who would not.

Staff to the patient: the thermometer has?

She also says that during the treatment she found wonderful people: nurses and doctors who were empathetic and understanding.

– I had a wonderful nurse with me who supported me. She was the first to tell me: «Alicja, it heals. Chemotherapy sounds drastic, that’s a big word. But it is effective ».

From then on, the woman began to think of chemotherapy as my curing friend. But he admits that there were also some unpleasant situations in the doctors’ approach to patients.

– I myself experienced impersonal addressing me. Question: “The thermometer has?” to this day, it rings in my ears and is an example of a message that I would never want to hear again. Unfortunately, at the time, I did not have the courage to express my opinion that it was me, Alicja. The woman who wants to be seen. I watched and heard older people being referred to as “grandma” or “grandpa”. It irritated me, it was hurtful – he is indignant.

Cancer has left a powerful mark on life

A year after the transplant, Alicja returned to work. But he still has to take care of himself, he does not even underestimate his cold. She has changed her eating habits and is under the care of a clinical nutritionist who looks after people with cancer.

– I have an active chronic disease: graft versus host. That’s why I take immunosuppressants. I am alive and happy with every moment. Six years after the transplant, I am a different person to myself and the rest. I react to harm differently, I have a lot of empathy, I say “I love” more often. The disease left a powerful mark on my life. And it will never be the same again. But I feel that I needed it for something, because nothing happens without a reason. There is a deeper meaning in getting sick and suffering. I really care about my loved ones, I care about their health. I think that I am also a different version of the mother for now 8-year-old Oleńka – emphasizes Alicja.

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Alicja Sadowska and Marzena Dembicka for the publication of a book supporting people who have heard the cruel diagnosis of leukemia have already collected almost half of the amount needed. In order to offer patients a book entitled «Bone marrow transplant and a new life» continues to raise money. Details of their actions can be found here: https://zrzutka.pl/d997b5

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