«Sometimes there are just painful binges. When you can't get out of pain...». Halina Kazimiroŭskaja – on the fight against oncology, chemotherapy, and why she can't ask for help
Ten years ago, the creator of the "Volny Chor" (Free Choir) found out she had a genetic mutation and a hereditary predisposition to oncology. For a while, she lived in anticipation of the illness, then the fear seemed to recede, but this year Halina was diagnosed with an aggressive form of cancer. Her friends opened an urgent fundraiser for her. In an interview with Belsat, she told how she accepted the diagnosis, what her main support is today, and what her current treatment plan is.
«I thought: well, probably if I haven't gotten sick by now, maybe I won't anymore»
Halina Kazimiroŭskaja learned about her diagnosis in early January this year. She felt, as she says, "something" and went to a therapist. At Halina's request, we are not disclosing the tumor's location or medical details. Diagnosis, including biopsies, additional ultrasounds, and bone scans, continued until mid-February. The results showed aggressive oncology. It was found in time: at an early stage, with no metastases.
In Halina's case, the cancer is linked to a genetic mutation, not hormonal factors. She learned about the mutation long ago – after a special genetic test that showed a hereditary predisposition to oncological diseases.
The first years after the test, Halina was afraid and expected the illness to come. Then, after 40, the fear seemed to recede.
«I thought: well, probably if I haven't gotten sick by now, maybe I won't anymore. I decided not to wait and not to be afraid. But it caught up with me,» she says.
Doctors advised regular check-ups – approximately twice a year. Halina admits she wasn't always disciplined about this. But she immediately adds: in her case, even regular check-ups wouldn't have provided full assurance, because the tumor was growing very quickly.
«You can have a check-up in September, everything's fine, but this thing grows in a few weeks in December. No check-up guarantees you'll catch it at the right time,» she says.
Doctors explained the decision to start with chemotherapy rather than surgery by the tumor's aggressiveness and the genetic factor. According to Halina, the tumor was growing very quickly: when it was found, it was already about three centimeters. If surgery had been performed first, the body would have needed time to recover, and chemotherapy couldn't have started immediately. During that time, doctors explained, potential cancer cells could have had time to activate.
«My cancer multiplies quickly and can spread rapidly. So I was very lucky it was found at a stage where there are no metastases yet. At least, they are not visible. One cannot be completely calm about metastases: it takes time for them to become visible. That's why doctors took this path: first chemotherapy, then surgery, more chemo, and radiation therapy. If the cancer has already had some consequences, chemotherapy should stop it immediately,» she explains.
«I wanted to just rush home, to Belarus»
Halina calls her children her main support now. They are 14 and 17 years old, and after the diagnosis, they took on a lot: helping around the house, with everyday tasks, and providing emotional support. She says she never imagined they were so grown up.
The conversation with her children about her condition was one of the most painful moments. For a long time, she couldn't say the word "cancer" out loud – neither to her children, nor to friends, nor to herself. She didn't want to "announce" the illness and bring it into the public sphere. For the first month, Halina admits, she seemed to refuse to accept what was happening.
«I went to work, even organized concerts. But half of my mind was already consumed by these thoughts. It sounded not like a usual illness to be fought, but like a black mark. As if that was it: you're done, you're going to die. I was in a very emotionally unstable state. I just wanted to rush home, to Belarus, because it seemed: I'll come – and everything will somehow be resolved. And thoughts about not wanting to die in a foreign land. Also about the children, how they would be without me, how they would stay here.
It was such a childish reaction of denial: "not mine, not me, you're joking, leave me alone." Now it's more adult: I've accepted it – and that's it. I'm working to get healthy,» she says.
Since the beginning of March, Halina has been undergoing chemotherapy once a week. She was prescribed a total of 16 courses before the main stage of surgical treatment. At the time of the conversation, she had already completed eight. There is a week between procedures to recover. Once, she was not allowed to have chemo due to poor test results.
«Now I joke that you have to earn chemo too. You have to do a lot to allow your body to receive it,» she explains.
Currently, she is undergoing so-called "white" chemotherapy – it is considered less toxic, but it's given frequently, so the body doesn't have time to recover. Afterwards, "red" chemotherapy is expected to start – it's stronger and harder on the body. There will likely be longer breaks between its courses.
The treatment plan is laid out for approximately a year. If everything goes according to plan, Halina should finish the main stage of chemotherapy in the autumn, then undergo diagnostics again, prepare for surgery, and have the surgery itself. Afterwards, according to the preliminary plan, there will be another round of chemotherapy and finally, radiation therapy. She hopes that after the operation, she will be able to return to work, at least partially.
«All my life I worked hard not to stand with an outstretched hand»
Halina says that even now she clearly feels the difference between "bad" and "good" days. On bad days, she can only lie down and wait for the pain and weakness to recede. On good days, she can go outside, do something around the house, help her children, and deal with organizational matters.
After one of her chemo courses was postponed due to test results, she unexpectedly had almost a whole week of relatively normal well-being. She was able to go to the forest – for the first time in two months, just to walk, without pain or heaviness in her body.
«For me now, great happiness is when it doesn't hurt. I text my friends: "It doesn't hurt, it doesn't hurt!" That's already such a level of happiness,» she says.
Doctors warned the woman that she could not work in such a state. Her body requires rest, and all remaining energy must go towards recovery. For Halina, this became a unique predicament: in Poland, people with permanent contracts in such situations can take sick leave and receive payments, but in her case, there is no such agreement.
«You can't say: "Stop, life, wait, I'll recover, and then I'll come back." Bills keep coming, and no one cares if you're sick or not,» says Halina.
The housing issue became especially difficult – she calls it the "sword of Damocles" constantly hanging over her. Because it's not just about her: her children live with her, and she can't simply "disappear" from household duties or move somewhere temporarily.
When friends suggested opening a fundraiser at the very beginning, Halina refused. She thought she could work, that she could handle chemo and manage on her own. The first few weeks it was like that: she would rest for a few days after the procedure, and then she could still do something. But after several courses, her condition changed drastically. In April, she realized she couldn't cope alone. And most importantly – that it wasn't a matter of one or two weeks, but months.
Halina admits that it is difficult for her to be in the role of someone who needs help. All her life she strived to be independent, worked hard, provided for herself and her children, and was proud of being able to earn a living in her profession.
«It's very difficult for me to ask. All my life I worked hard not to stand with an outstretched hand. And now this has just brought me down: "So you can do that?"» she says.
She also dislikes being pitied, and she feels uncomfortable when the fundraiser is explained by the fact that she "did a lot for Belarus." Halina says that everything she did was her conscious choice, not a contribution for which someone should now repay her with help.
Ultimately, her children pushed her to accept the fundraiser. She says that if she were alone, she might have found the most minimal way to survive. But with her children, she cannot afford to simply say "whatever happens, happens."
«There are days when I don't sleep at night from pain»
How Halina's day goes depends on her condition. Her schedule only includes medication. Halina jokes that she already has a whole drawer of drugs "like a 90-year-old grandmother." If she wakes up in the morning and realizes she's not in pain, she can plan some activities.
She hasn't completely stopped working. Physically, she cannot teach, conduct, or work with vocals and people now, but she continues to do what can be done with a computer and phone. A part of the school's management remains her responsibility: schedules, classes, legal and accounting matters. The Free Choir's activities also continue: concerts have already taken place without her as a conductor, but she is still involved in the organization.
«On good days, I put in effort. I can write, organize, resolve things. But there are days when I don't sleep at night from pain. Then I just "scroll through" these days. You just have to live through them,» says Halina.
Now, for the first time in her life, she has so clearly prioritized herself. Doctors told her that rest is also part of the treatment, and she tries to adhere to that. Not to work herself to exhaustion, not to take on everything she might have taken on before, not to prove that she can still do it. Halina says that after her diagnosis, she started to notice how many people around her had also gone through oncology or had such an experience in their family. Often, this only becomes known when you yourself talk about the illness.
«It feels like there are almost no families now where cancer hasn't been in the first or second circle. Unfortunately, there's a lot of this disease,» she says.
She reflects that prolonged stress can affect health – not as the sole cause, but as a background in which many Belarusians have lived in recent years. According to Halina, this is a general state of pressure: due to repressions, war, the destruction of normal life, anxiety for the country and its people.
«Well, I cried out to the universe, cried everything out – and calmed down»
Asked if she allows herself to cry, Halina answers affirmatively. At first, she did it from shock, then – from exhaustion and pain.
«Sometimes there are simply painful binges, I call them that. When you can't get out of pain... I had a month when, for various reasons, something was always hurting. And it doesn't go away, they don't give you a break.
There were moments, during such painful binges, when I just cried out of desperation. It doesn't particularly help, unfortunately. But sometimes it happens that the pain switches off – that's it, it's gone. And I'm like: "Oh, I'm alive!"» she says.
When it all ends, Halina really wants to go to the sea. She says that as soon as she is healthy, and doctors allow it, she will take her children and go on vacation. After treatment, she wants to build her life differently: to allow herself to choose not only obligations more often. She says that she has lived in Warsaw, Poland for five years, but hardly truly knows the city, because she was always working and busy. And even more concerts – paradoxically, it is now that she has felt how much she misses them, more time for her own creative work: composing, music, projects that have been long postponed.
Halina doesn't want to look for logic or a reason in the illness, to ask "Why me?", because that can lead to a dead end. When you see very old people or children suffering in the chemotherapy ward, you start thinking it would be better if it were you, not them, she says.
In her opinion, bad things just happen, and blaming oneself or the universe is pointless. Yes, lifestyle, stress, overwork, and constant tension can affect health. But there are no guarantees: one can live calmly and correctly – and still get sick. Therefore, the main conclusion for her is not to find someone to blame, but to take care of herself, because to "manage" and carry out important tasks, one must be alive and healthy.
«Well, I cried out to the universe, cried everything out – and calmed down. And then I started giving thanks that I don't have metastases, don't have anything even more severe. Thank God it's me, and not my children,» she concludes.
* * *
As of 09:36 AM on Wednesday, the necessary amount has been collected: 8,738 euros out of 8,500. Belarusians did it in a day.
Comments