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Many women refuse to admit they have cancer. They hide it from the employer and lead a double life – says Ryszarda Olszewska-Łapko. The president of the “Agata” Association of Amazons in Szczecin advises how not to get sick.
Both ladies had breast cancer. You are several years after the operation. Don’t you worry that the disease will come back, that it is dormant now?
Ryszarda Olszewska-Łapko, president of the Association of Amazons “Agata” in Szczecin: We consider ourselves absolutely healthy.
Joanna Łukomska, vice-president of the Association: Maybe it was different at the very beginning. The first years were a bit like waiting for what would happen. Can I make it? As time goes on, you stop thinking like that. At the beginning, I celebrated every month, year and anniversary. And right now, I don’t even remember when it was. I know a long time.
How did you hear about your own illness?
RO-Ł .: Our mothers saved us. They fell ill before us. So we knew what could threaten us and we were aware and alert. We examined ourselves systematically. We have a family predisposition to cancer.
J.Ł .: When my mother fell ill, I had regular checkups. This thing was detected every now and then. But these were not malignant changes. Eventually a malignant tumor appeared. Fortunately, the change was small. Thanks to this, there was nothing more than surgical treatment. Another operation was carried out prophylactically, my ovaries were removed and everything else. As a result, hormones do not buzz up so much, so the likelihood of the cancer reoccurring is lower. My family had ovarian cancer, so there was a risk that I might have one too.
RO-Ł .: Ovarian or cervical cancer is very dangerous. Preventive examinations and early diagnosis can save lives.
J.Ł .: Ladies do not use cytology, which allows them to detect changes at the pre-cancerous stage, i.e. fully cured, although the National Health Fund sends them invitations for free tests. They probably assume that there is no unrecognized problem.
It is hard to forget about your own cancer when more ladies looking for support in your organization talk about their disease?
J.Ł .: We don’t think about ourselves then.
RO-Ł .: If you are able to help another, it means that you are strong. What we do gives us strength. Running this association is almost a professional job. You have to raise money, settle it, prepare a plan of functioning … Of course, we do research systematically and we are careful. Because you have to.
J.Ł .: The alarm bells for us are situations when one of our members has a relapse. And then you think: Oh! It may happen. But we have such a cool unwritten rule that… it doesn’t apply to us (laughs). It’s just more convenient to think this way, because what has to be will be. When we research, we have a real chance that it will all catch up quickly.
RO-Ł .: I think that the group gives us strength. Because if each of us stayed in our home, it would be enough to feel some pain, and you already panic that maybe it is a metastasis. And when we come here, we talk to other women … We hear: “Eh, I had it too!” And it turns out that it’s nothing to worry about … Although we try not to deal with it too much. We don’t analyze our well-being. Rather, we focus on what we can do, where to go, where to go, where to have fun.
J.Ł .: Amazons are very active. Often more so than ladies who have not been ill, who deal with normal life and do not have time for many things, or maybe the will. Our girls don’t need to be told twice. Are we going out to the theater? Here you are. Nordic walking, a trip? Even more willingly.
The disease shows what is important in life?
J.Ł .: Of course. Each of us has made a change in the way we think. The fact is that with time it disappears a bit, because when you are fresh you are so brave, you promise yourself a lot … But the way of thinking and treating certain things does change. And fortunately it stays. We do not get caught up in the pursuit of goods, things, we do not care about unimportant matters. In class, a psychologist teaches us how to be assertive, how to protect ourselves.
When you fell ill, did the division of duties change in your homes?
RO-Ł .: Sure. Though of course it had to be worked on.
J.Ł .: Everyone always cares about their disease – at the very beginning. Later on, life goes on and sometimes you forget that changes are necessary at home. Since we don’t look bad or feel bad, everyone forgets that we are not allowed certain things. First of all, we are not allowed to work physically. Especially the hand on the operated side should be spared, because the lymph nodes are most often cut out there. I always joke that I have a kissing hand and a ring (laughs), not work. It is not always possible to do this, but it must be remembered that swelling that may occur as a result of overloading is very difficult to eliminate. Contractures of the shoulder girdle are also difficult, the muscles function differently, the spine works differently. That is why we are disabled. Not because of breast amputation, because these tend to grow back, as we say, you can do a reconstruction.
What is the approach of women to such reconstruction today?
RO-Ł .: It was not said much about it in the past, it was not so popular.
J.Ł .: We are 6 years after the reconstruction and we feel great. For a long time we believed that the lack of breasts did not bother us at all. Because it is. It is a question of attitude, of psyche. Does it prove my worth if I have a breast or not? But there are ladies for whom it is very important and this must be respected. Now, fortunately, you can do a reconstruction in many ways.
RO-Ł .: There are some limitations, however, and not all women can do it – due to their health condition and the treatment they have undergone.
J.Ł .: There are also ladies who would like to, but are afraid, because it is a serious decision about another operation, or even a few.
RO-Ł .: One of our friends had a breast reconstruction at the age of 70 and it works great.
Today the ladies seem strong. Has it always been like this? How much has your disease changed you?
RO-Ł .: We cried a lot. At the beginning, when a new patient came here, it was difficult to talk to her, because the experiences and emotions returned right away. But time does its job.
J.Ł .: The workshops with psychologists that we organize here were very helpful. A psychologist is needed because not everyone can cope. But time also shows that we are getting stronger every day. And, if we only want to, we are able to move mountains.
RO-Ł .: It is proven that a woman who has a very good prognosis, but withdraws herself, will only think about her illness, chances or the lack of them for further life, can end her life adventure much faster. Unlike the one who had a worse prognosis, more severe treatment, but she did not give up. It’s harder to cope without group support. The lack of knowledge about the activities of our association tells the sick: “do not go there, you will be depressed, what do you need this for?” Many a patient who will finally break down and come to us, says later that she came to us half a year too late, because she was sitting at home and despaired how poor, sick and lonely she was. When I came to the association for the first time, I thought: they probably didn’t get sick, so happy with their lives. I was hesitant myself too. My husband encouraged me every day, asked me: “You were?” “I wasn’t” because something … Because nobody is answering the phone. I called the association and prayed that no one would pick up the phone. My husband finally told me that if I didn’t go there, he would go and bring the amazons home to me. I thought: no, such a shame … and left.
J.Ł .: My daughter brought me. She was going first. And I follow her – as if to be sentenced. At first, I only came up with gymnastics. I saw women talking, smiling, joking. It turned out that they were freshly rehabilitated. They knew each other well. I thought: what am I so poor here … They are healthy and I am sick … Later it turned out that we are all in the same wheelchair. With time, I slowly got involved in the work of the association. I have been on the board for 12 years.
Have you ever wondered what you would not have done in your life if it were not for the disease?
J.Ł .: Certainly, if it weren’t for the disease, we would never have met and would never have become friends. Staying here for me, working for other women has changed. I’m more open. I’m less afraid. I got rid of all sorts of complexes. It is not a problem to talk to the professor, headmaster and perform in public. I wouldn’t do that sometime.
RO-Ł .: We have a lot of memories and experiences. Besides, we are constantly learning. We have gained a lot of knowledge. We learned how to run an association. Seek funds. We help in establishing new associations in smaller towns. It’s harder in small towns because everyone knows each other there. And women don’t want to be identified with the disease. It’s easier in a bigger city. Although there are friends who do not admit at work that they are sick. They lead a double life. This is difficult. In small towns, women do not want to admit they are ill. It happened that a woman did not want to be operated in an oncology hospital because of the stamp on the sick leave which she was supposed to deliver to the workplace. She changed the hospital.
Maybe she was scared for a job? Illness is a good excuse to get rid of someone, replace them with healthy ones. “If he has cancer, he will live soon” – how many people still think that cancer is a disease that ends in death …
RO-Ł .: Probably yes. It depends who the sick woman works with. The belief that cancer is a sentence is still lingering. And cancer is a chronic disease today. Of course, there are departures to the other side. Fortunately for us, it is very rare that someone leaves at a young age. If anything, they were ladies in their eighty-something years. And not because of the cancer.
Doctors, scientists talk about the progress in the treatment of neoplastic diseases. Did you feel it on yourself?
RO-Ł .: Yes. The first thing is that patients report earlier for testing and the treatment may be less invasive. For some time now, also what is our problem, i.e. the lack of lymph nodes, has been solved in a different way. Not all nodes are removed anymore, only the so-called sentry knot. If it is clean, it means that the remaining nodes are not occupied and there is no reason to remove them. Then there are no such swelling, contractures, and shoulder pain. There is also the possibility of labeling the HER2 receptor. So he does not heal blindly anymore. It is known what drugs. It is more effective. There are also medications for pregnant women. These women recover from the disease and give birth to healthy children. It used to be unthinkable.
What is the attitude of their partners towards women with cancer after breast amputation?
J.Ł .: Often coming to terms with the lack of a breast is more difficult for a woman than for a man. She thinks she will not be accepted, and her husband takes it perfectly normal. He’s with a woman not because of her breasts.
Doctors sometimes hear questions as to whether you can catch the cancer …
J.Ł .: (laughs) We always say that this is not a sexually transmitted disease. I think people are afraid of cancer in general. And when they hear “cancer”, they run away, don’t know how to react … They also ask strange questions. Often, adult educated people on a level do not know how to behave in such a situation. When they find out that someone from their friends or family has cancer, they sometimes withdraw, limit contacts, which is unpleasant, It is difficult to persuade someone to meet or call the sick person, tell them that it is not contagious, that you can normally to talk.
Well, what can a healthy person ask a sick person so that they do not feel offended?
RO-Ł .: About everything. We’re normal. The worst thing is the feeling of compassion, pity. I remember my rebellion after surgery. I did not want to answer the phone because when I heard the question asked in a suffering voice “how are you feeling”, nothing irritated me more. But our members say their friends have moved away from them. Then they came back, admitted that they didn’t know what to do. And the patients need to talk. They come and tell their full story. Often it is because they had no one to tell her to. We listen to these stories. However, we do our best not to make it a rule that people talk about it all the time. We try not to make our meetings such an eternal lament, because it will not help the sick. You have to let it out and move on. Nearly 200 women belong to the Association of Amazons “Agata” in Szczecin. The youngest is 28 years old, the oldest – 87.
Interviewer: Anna Miszczyk