«Mom will recover because there is no coronavirus. He has some kind of leukemia »

The coronavirus robbed Paulina of something that was most valuable to her at the beginning of March – a banal blood test. If she had been able to do them in the first weeks of the pandemic, she would not have landed in an identical hospital. He wouldn’t have had to go through a lot of virus testing and would not have spent 10 days in the ICU after all. If a morphology had been performed then, she would have learned that she had leukemia …

As part of the #coronasharedstories campaign, we share stories of people from around the world with you. Read what life is like during the SARS-CoV-2 coronavirus pandemic in different parts of our globe.

1. When the epidemic broke out, clinics and laboratories were closed. Paulina could not even do the simplest blood test. When it finally worked out, it turned out that he had leukemia
2. The woman tells about the reality of patients in oncology departments during a pandemic – no visit, isolation, loneliness. For six months, she has seen her husband and children mainly on the smartphone
3. Her older son was afraid that his mother had the coronavirus. When he found out it was leukemia, he was overjoyed. – For him, the virus is the most terrible thing in the world, he thinks it ends only in death – says Paulina
4. You can find more such stories on the TvoiLokony home page

“I don’t blame anyone …”

On the phone, Paulina has a strong voice. Words carry a dose of energy. He is now in remission, the disease has withdrawn.

– I talked to many patients in my ward. All therapy is delayed. The panic caused by this pandemic blocked everything, he says.

Doctors told her: two more weeks and we might not get you back. It is difficult to estimate the health consequences of a delay of several weeks. Paulina claims that if the cancer had attacked another day, she would have avoided a lot of unpleasantness, fear and pain. Failed to. She does not blame anyone personally, but she feels that conclusions must be drawn from her tragic case.

– After all, the NHF would spend about PLN 20 on the morphology, which is so little compared to the costs of a 10-day stay in the ICU – he adds.

It’s never a good time to get sick, but this one is especially bad

– Unfortunately, my disease began at the very beginning of the pandemic. On March 9, I started to be treated at the POZ clinic for cough – he says. – For a month and a half, I was given more antibiotics. The coughing continued and I was getting weaker and weaker. It is true that the family doctor finally saw me personally, even auscultated me, but did not order me to do the tests. He was blocked, I don’t know if he was top-down or his head … At least he didn’t think about the morphology.

Paulina wanted to do the research on her own. She called private institutions and even someone picked up the phone, but so what … The laboratories refused, she was told that due to the epidemiological situation, diagnostics was suspended.

When the test was finally done after a month and a half, the results were very bad. The doctor ordered him to report to the hospital immediately. She went, and from there they took her by ambulance to an unnamed hospital in the provincial town 60 km away. She was coughing terribly, and yet coughing is one of the symptoms of COVID-19. Two long days in solitary confinement she waited for the test results.

“I have terrible memories from there,” he says. “I was lying between the infected and panicking.” I had zero immunity, I could catch anything.

1. The first symptoms of leukemia. It is easy to mistake them for the common cold

Fortunately, Paulina was walking, she was able to take care of herself. However, during those two days she listened to the screams coming from the neighboring rooms.

– Meals were left outside the door. Whoever brought them knocked, and we took them away after a while – he recalls. “But how would the lying people do that?” I remember the man behind the wall complaining that he was unable to come. I don’t know how he was served drink and food. The bedridden patients were terribly injured, mute, and not fed regularly.

For her, those 48 hours were an uninterrupted series of uncertainty – contacts kept to a minimum, rounds on the phone. Staff dressed in plastic coveralls, masks and goggles. She had no idea who she was talking to.

— In total, I was tested seven times – says. – When the first result was negative, I finally came across hematology. With pneumonia, so I was tested for COVID again. I didn’t respond to drugs, I was given 5 or 6 different antibiotics in a row… and nothing. It ended in the ICU with a fight for every breath. It was bad.

When the next antibiotic finally worked, treatment for the leukemia began.

Blood cancer ward, or isolation again

– I remember the moment when I came to the hematology department from the ICU – says Paulina. – I was completely mentally devastated and I really wanted to hug someone. Necessarily.

She was placed in solitary confinement – a tiny room with a bathroom. Due to the very low immunity after chemotherapy, her world was limited to a tight space between the door to the corridor and the window that she could not open. She spent two months in a room of 3 by 2 meters. The daily walks were three steps from door to window and back again. In the second month of isolation, Paulina thought she had become claustrophobic.

“I’m at ease now,” he says. – I’m in a four-person room.

A few days ago, Paulina was able to go out into the corridor to the refrigerator or microwave. Such short masked exits, but it’s always something… She wasn’t walking down the hall. You can’t, because it’s a common space, but she sneaked into a corner to talk quietly on the phone. Thanks to this, she told her story. Now her roommate has caught an infection and the exits are over. Intimate matters can only be mentioned in SMS.

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When she entered the ward, the sick were not allowed to deliver food or clothes. Now patients get parcels quite regularly. The family leaves them at the appointed time on duty, and the paramedics distribute them around the ward.

– It is what it is … In the case of patients with leukemia, the stay in the hospital lasts a long time, and we are not able to pack for a month ahead. We function thanks to the help of our relatives – says Paulina.

Even in isolated wards, patients keep the back of their heads that an infection can become entangled. Everyone wears face masks, but the hospital is crowded.

1. More stories: How do we deal with the coronavirus? #coronasharedstories – letters from around the world

Family life closed in a smartphone

Paulina is a young mother. He has two sons, the elder recently turned 8 years old.

– It is said that in the past, before the coronavirus, contacts with the family were easier. Fortunately, we have smartphones left – sighs Paulina. – We call each other, turn on the webcams and talk.

Therapy has its own rhythm. Chemistry in hospital, then home for 2-3 weeks and return to hospital for another month or longer. Paulina has been seeing her husband and children for half a year, mainly thanks to the application on the phone. The last time she had been lucky, she had been put in a room on the ground floor. The husband would come to the window and they looked at each other through the glass. He also brought the children, and Paulina waved at them. After another dose of chemicals, he is lying on the floor.

Her older son was very scared at first that his mother had COVID-19. He was watching TV, after all, and the information coming from the screen was terrifying. He imagined that the coronavirus was the most terrible thing in the world, that it only ended in death.

– Once, he came running from the yard and exclaimed: “I know what’s on mummy” – says Paulina. – «Mummy has leukemia!» He was overjoyed. He is terribly relieved that it is not a coronavirus and that I will not die. We explained to him that my blood was bad and I had to take medicine. So much. The child will not understand what may be next. Now, together with my 5-year-old brother, they are counting down each day of my stay in the hospital. They say: “Mommy, only two more weeks and you are coming home”.

Paulina hopes that the consolidation phase (eliminating cancer cells remaining in various corners of the body) and her life will return to normal. Attitude gives a lot. She found out about it in the ICU. She was very determined to get out of there, go back to the ward and start normal treatment.

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You have to find extra strength in yourself not to break down

It’s very hard at first. You have to sort this out in your head somehow, and next to someone close to you. The phone heats up, calls last 4 – 5 hours. Later, everyone gets used to the situation and learns how to control emotions.

“At some stage of my illness, I needed psychological support badly,” she says. – I talked for hours with our psychologist, many tears flowed, but I know that attitude is half the battle, if not more.

Paulina claims she has learned to control her thoughts. If she sat and cried, the family would be harder, so she tries to be strong. He also supports other patients. After all, they spend together 24 hours a day. They keep their spirits up, although it involves taking on someone else’s emotions.

– If I could, I would hug my husband – says Paulina. – He would console me, he knows how, we’ve known each other for a long time. Of course, I too am afraid to open up completely to strangers. When I was lying in my pampers, I wanted my family to be there. Meanwhile, I had to rely on strangers.

– Patients, depending on the stage of treatment, life and family situation, may need psychological help – says Anna Jewusiak, a psychologist working at the Department of Hematology of WWCOiT im. Copernicus in Łódź. – And I can provide such help. Some I see every day, others once or twice a week or less. We spend 15 minutes to an hour and a half together. Most often, the patient needs specialized forms of psychological help, but sometimes he wants to “talk about nothing” in a cordial atmosphere.

– There is a palliative unit next to my ward. Every day I see the families, mothers, fathers, husbands and wives who are sick by the windows, says Paulina. – I suppose it’s a traumatic experience for these people. I then realize that if I had died in the ICU without being able to physically contact my family, it would have been the worst end.

– I noticed that during a pandemic, patients more willingly use my help – says Anna Jewusiak. – Previously, they relied to a greater extent on natural support systems, such as family, friends. Their relatives could visit them in the hospital, accompany them directly in difficult situations that arise during treatment. Psychological help was more often used by people who, for various reasons, did not have such support. Now, however, we have become more needed by a larger group of patients, because we are at the hospital.

– Let’s not forget that interpersonal ties are the most important, especially in the current situation of high uncertainty – adds Anna Jewusiak. – Let’s take care of the bonds with our loved ones, but also just be kind to strangers. Each smile gives rise to another smile and strengthens vitality.

Mental support is very important, but so is safety

– We rarely see doctors, psychologists try very hard, but nurses are on the front line – says Paulina. – I am positively surprised by how much heart they have for us, and yet they are also afraid. They are wonderful, they come smiling, they motivate you to pick yourself up. It is amazing strength.

In the era of coronavirus, when the patient gets to know the diagnosis, prognosis and treatment options, he can only count on a doctor, nurse and psychologist. The latter often participates in a conversation with the doctor or takes the patient right after such an appointment. The length of a single stay in the hematology department in the case of an acute form of cancer ranges from one to two months. And during these two months the patient has no physical contact with his loved ones.

– Of course, from the moment a patient is admitted to the ward, when examinations are underway and he cannot share his uncertainty directly with his family – adds Anna Jewusiak. – We try to support the emotionally ill with the whole team, which includes doctors, nurses, caregivers, paramedics and myself. Patients talk to their families on the phone, and they only physically have us.

Psychologists note that as the pandemic continues, patients endure confinement less and less. This is the mechanism of our behavior. If the crisis is short-lived, we easily mobilize forces, while when it is prolonged, mobilization decreases. It’s okay if you know you will be away from loved ones for a week or two. It is different when hospitalization extends for three weeks, a month …

Paradoxically, the pandemic also had a positive impact on the life of the ward. It turned out that the therapeutic and treatment teams started working together really well. Doctors, nurses and psychologists have much more work to do, so mutual assistance and the transfer of competences are at a premium. Doctors more willingly use the services of psychologists because they can learn a lot from them about communication with the patient. The pandemic has set new directions for cooperation not only between the staff, but also between the staff and the patient.

– Patients leave when they are safe – adds Anna Jewusiak. – And how long it will take to regenerate, it is an individual matter.

Both staff and patients have already learned to live with the coronavirus. At the beginning of the pandemic, patients with blood cancers were afraid of being discharged because they did not know what awaited them outside. On the other hand, they wanted to go home very much, they were experiencing an emotional conflict. They felt safe in the hospital, and at the same time they were worried about their families that a loved one would get COVID-19. Now they realize that if they strictly follow the safety rules, nothing bad will happen. People with blood cancers and their families adhere to the rules of hygiene because they know that for them it is a matter of life.

— We with leukemia feel that if everyone in the room was visited by one person a day, the risk of infection would be much higher – says Paulina. – I’m trying to cut off COVID. I am definitely angry internally at what happened at the beginning: chaos, delayed treatment, paralysis of health care, insecurity.

What about visits?

– The visiting ban is strictly adhered to – says Anna Jewusiak. – This puts patients who have just been diagnosed with the disease in a very difficult situation. The moment of hearing the diagnosis is a shock, so the family would be a natural support in this situation. Previously, information about the diagnosis was very often communicated to the patient in the company of a family member, now it is impossible.

Hospitals have recommendations from the Ministry of Health, a lot also depends on the directors, while hardly anyone engages in polemics. The concerns of the medical staff were expressed by Dr. Tomasz Majewski, an oncologist surgeon: “In the current situation, opening hospitals to visitors is a very bad idea. The implemented procedures are effective, we do not observe a large number of infections in the wards. We check patients with tests, but all visitors cannot be checked. I cannot imagine how the taboos of visitors could be controlled, and I would not fully trust preventive measures in the form of masks or hand disinfection ”.

Different countries, different places and touching stories. Click on the map, see lists from all over the world and choose the one you want to read. And come back, because we will publish more every day! #coronasharedstories

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