Mermaids on the run

You are a young married woman, you are trying to have a baby, but you don’t get pregnant for a long time. Eventually two lines appear on the test, but after eight weeks you find that your baby’s heart has stopped beating. “Why?” you ask yourself and persistently seek an answer to your question.

Or: you had a baby seven months ago by caesarean section. The childbirth went through without complications, you and your son are healthy. You are recovering, your period is back. But why does it last a dozen or so days and smell so bad?

Or: you’ve been treating erosion for several years. You have it under control, you visit your doctor regularly. You are so used to it that you almost forget about it. When your period stops unexpectedly, you think you’re pregnant. After some time, bleeding returns, but at a completely different date.

Or you hear from the gynaecologist: “It’s just a tiny tumour.” You want to get rid of it, but apparently there’s no need. However, the tumour grows. Finally, you get a referral for surgery and you think: they will remove the tumour from the ovary, they will treat it, I will get two weeks off. And then you wake up, grab your belly and feel empty.

At random

Cytology, ultrasound and regular gynaecological examinations. Women aware of their body. Both mothers and those who are only just planning to have children. All of a sudden, between one job and another, walking the dog and designing the garden, they hear the same diagnosis: cervical cancer. They don’t believe it, they cry, they break down, they give up, and then, determined, they fight. After all, medicine is so advanced today that it copes well with this – one of the most insidious of cancers. Unfortunately, half a million women worldwide develop cervical cancer each year. In Europe, one dies from this cancer every 18 minutes. Polish statistics are terrifying – about 3.5 thousand people hear the fatal diagnosis every year. Polish women. Half of them will never recover because they have waited too long to get a cytology test. But cervical cancer also affects those women who have regular check-ups. This type of cancer attacks at random.

Mermaids, or women suffering from gynaecological cancers, tell their stories to others. Through the “Syrenki” [Mermaids] or “Syrenki na gigancie” [Mermaids After Hours] groups on Facebook and the Niebieski Motyl [Blue Butterfly] Association, they recommend specialists, exchange experiences and establish relationships. They organise trips, go on cruises, support each other.

There isn’t a single mermaid who would not emphasise the importance of women met via the Internet to her. “I owe my new friendships and a lot of evidence of what great a power dwells in women to my disease. We are able to rise even in the face of the most cruel blows, when it seems that there is nothing to fight for any more,” says Asia, a 46-year-old whose uterus, ovaries, fallopian tubes, appendix, greater and lesser omentum, and 53 nodes were removed from her abdomen three years ago after a cancer diagnosis. According to the specialists she visited, a radical surgery, i.e. a hysterectomy, was the only effective method of treatment. And she would probably have agreed to it because she had already given birth to her daughter and did not plan to have any more children, but no one asked her for permission. She couldn’t even sleep on the decision to undergo the procedure. “The tumour grew out of an initially harmless and regularly controlled ovarian cyst. At first, the doctors reassured me that it was a minor lesion that didn’t need to be removed. Six centimetres, two chambers, a solid tumour. ‘Come and have the procedure done in eight months,’ I heard. Only once the tumour grew did I get a referral for an earlier date,” says Asia.

Edyta, 32, has good memories of her doctors. For years, all the women in her family had been treated by a trusted gynaecologist. She called him one November afternoon when unpleasant-smelling blood began to ooze from her vagina.

“Seven months earlier, I’d had my second child, a son. The delivery took place without any complications. Therefore, when the doctor noticed an infiltration of a large tumour in my cervical canal, he was shocked. Such an advanced cancer in such a short time? And isn’t it the type of cancer that usually attacks… the lungs? The day before, my husband and I had talked about a third child. That maybe it was a good moment for it. Although the initial suspicions sounded terrible, I left the doctor with hope – nothing was a foregone conclusion.”

Marta, 33, a mother of two, changed her partner and tried to get pregnant again. For several years she had been treating erosion, but she had the disease under control, she regularly visited the doctor. She was so used to it that she forgot about it at times. She considered amenorrhea a good symptom. In the gynaecologist’s office it turned out that it was not pregnancy, but a harmless hormone disorder. She got medication and went to work. As a seamstress, she had her hands full. After some time, she noticed bleeding that was unusual at that time. “The doctor took a biopsy and announced that it wasn’t good. He didn’t specify, he just kept me in suspense for three days. Because that’s how long I waited for accurate results.”

Marlena was convinced that as a future mother she was going to have a regular periodic check-up. She was 36 years old and had a teenage son, and she had taken the previous pregnancy well. She was concerned about the fact that the attending physician from the state clinic did not want to give her a referral for prenatal tests. She decided to seek advice from a private gynaecologist. It saved her life. “It turned out that cancerous tumours were developing in parallel with my child. That I am a carrier of the BRCA1 gene mutation. I was in shock.”

Maria went to see a doctor after her first miscarriage. Even though she was only 26, she and her husband had been trying for a baby for a long time. Her body stubbornly refused to respond to any efforts. The couple even visited an infertility clinic. On the day Maria received the results, it turned out that she was pregnant. She was jumping for joy. Unfortunately, in the eighth week, the foetus’s heart stopped beating. “I volunteered for a detailed examination. The histopathological results showed me a precancerous condition,” she says.

Diagnosis: malignant tumour

The mermaids remember the diagnosis traumatically. “Christmas was approaching. I called the hospital for the results for several days. Finally, I was invited to pick them up. The doctor saw me and said: ‘The results are very bad.’ Before I could speak, the doctor began to explain: ‘Now you have to go to the hospital in Olsztyn, go to the fifth floor, but no, it’s after 2 p.m., you will not be admitted, tomorrow then, please take the referral...’ “Doctor, what do you mean by ‘very bad results’?” I asked nervously. In response, I heard that everything was written clearly in Polish in the discharge report. ‘Malignant tumour,’ I read. I started crying. The doctor did not react – she handed me the results and asked: ‘Please sign here.’ It was the worst moment of the whole illness. Even the operation, followed by chemotherapy, radiotherapy and brachytherapy, did not hurt me as much as the heartlessness of this woman,” recalls Edyta.

The specialist who treated Maria assured her that the lesion looked harmless and that conisation, i.e. shortening the cervix, would be enough to remove it. The exact results came after three weeks. The diagnosis as in Edyta’s case: malignant tumour.

“I broke down. My husband got me back in line, he immediately found a clinic in Bydgoszcz, reportedly one of the best in the treatment of cervical cancer,” she recalls.

Although the couple was convinced that they would be treated by outstanding specialists (as they had come there all the way from the Bieszczady Mountains), it turned out on the spot that the doctors proposed only one solution: radical surgery. “I was 26 then,” says Maria.

After receiving the diagnosis, Marta was convinced that it was a mistake. “33 years old and cancer? My world collapsed around me. I wanted to say goodbye to my relatives. Fortunately, their support helped me take up this unequal struggle.”

Radical cut

“Radical surgery” – that’s what Edyta, Maria, Marlena and Marta heard from their doctors. This means a hysterectomy, which is a procedure to remove the uterus and, if necessary, the ovaries, fallopian tubes, surrounding lymph nodes and parts of the vagina. After such an operation, a woman can never get pregnant again.

“The professor who admitted me to the ward noticed that I was young, but also warned me that with such an advanced stage of cancer without radical surgery, it could be really bad. I still hoped that he would not send me for a hysterectomy, that it would be possible to save at least some of my organs, that maybe pharmacology would do it... But the doctor advised that I should not delay the operation, my condition was too serious. I signed the consent... And I woke up without my uterus, ovaries and fallopian tubes. Then I found out that due to the advancement of the cancer, this was the only solution. The operation took place eight years ago. I follow the news related to cervical cancer and I know that if I had come with such a diagnosis today, probably every doctor would think that there is nothing left to operate on. That is why I am glad that my life was saved then,” says Marta.

Edyta’s case was very difficult and, above all, rare. “There was no question of pharmacology, too high a risk. While in hospital, I watched the doctors – they exchanged my results and they could not believe that they were dealing with this type of cancer and that it had appeared in such a young person. My husband and I were afraid that the tumour would grow to a size that could not be operated on. Every day mattered. That is why I decided to have a radical hysterectomy, although a few weeks earlier I had planned a third pregnancy. However, the awareness that I am already a mother of two wonderful children helped me in my decision, and this operation was my only chance for life.”

The hospital that Marlena ended up in was the first one that came to her mind. She went there on the recommendation of her doctor. Terrified by the diagnosis, she did not consider choosing other specialists. “Everything happened very quickly, I had no additional knowledge of the disease. I was four months pregnant and I had to make the decision about a double procedure – having an abortion and a hysterectomy to save my life – immediately. I accepted radical surgery as the only solution, nobody offered me a different method.”

Maria’s maternal instinct was so strong that it would not be drowned out by the suggestions of the doctors. “I begged the doctor to change my treatment plan. I visited him several times, promising to have a hysterectomy as soon as I had my first baby. But not now when I’m dreaming so much of being a mum! After long persuasions, the doctor accepted my request and assured me that I would only be subjected to conisation. Unless the cancer turned out to be so advanced that everything has to be removed. ‘Okay, maybe it will work,’ I thought and signed the consent to the procedure. After the operation, I woke up, grabbed my stomach and, terrified, asked my husband, ‘Did they cut everything out?’ ‘No,’ I heard which made me cry with joy.”

Unfortunately, the lymph nodes had metastases for immediate removal. The girl, however, gave up on the clinic in Bydgoszcz because she kept being persuaded to undergo radical surgery. Thanks to one of the mermaids she met on the Internet, she found another specialist. “Marysia, I will help you! I have an appointment tomorrow at 12 with a specialist in Warsaw. You will come into the office with me, I will share the appointment with you. My doctor will definitely listen to you, he does not refuse to help anyone,” an Internet user from “Mermaids After Hours” assured me. The doctor she recommended decided that in the case of my borderline cancer, it was enough to additionally remove only the lymph nodes. And not deprive me of the possibility of getting pregnant. Today, thanks to the mermaid and the doctor, I am a healthy woman,” says Maria.

We are strong ladies

Edyta called her cancer a “roommate”. Fearing its malicious infestation in her body, she organised a... wedding within three days from the diagnosis and treatment plan. “In three days we arranged the formalities with my fiancé, invited guests and bought wedding rings. I even managed to get my dream dress!”

After the wedding, she underwent a hysterectomy, and then chemotherapy, radiotherapy and brachytherapy because surgery alone was not enough. The treatment lasted several weeks, Edyta visited the hospital regularly – every three weeks for three days. She was always the youngest in the room. “My friends from the hospital were 50 or 60 years old,” she smiles. “I only met one young girl, with an even worse case than mine. I believe her story will have a happy ending. After all, we are strong ladies.”

Asia was not as lucky as the other mermaids. Nobody informed her that the tumour removal procedure might end with a hysterectomy. The operation was to take an hour and a half. “I was convinced that they would remove the tumour from my ovary, treat me, I would get two weeks off and that’d be it. Nobody warned that the procedure could be extended,” she emphasises regretfully.

She had signed some documents before the operation, but she was stressed and did not go into details. She was given anaesthesia in her spine and woke up after nearly five hours of surgery. “Gutted. This is how I felt at the news that the doctors had cut everything out of me. Why did someone decide about my body without my consent? Test results have shown that the tumour was borderline cancer at an early stage. It was diagnosed early on, which is very rare. So there were definitely other treatment methods available. Was I stripped of my femininity just because I turned forty? ‘You were born lucky,’ I heard from the doctor after the procedure. I believed it because I was stunned right after the operation, I was glad to be alive. The depression came later. Because although the medical staff treated me very well after the operation, no one offered a psychologist’s help. ‘Maybe some morphine?’ the nurse asked, seeing the pain I felt with every movement. I spent 11 days in hospital and lost ten kilos. After returning home, I looked at myself in the mirror. My butt was as flat as my back.”

The side effects of a hysterectomy are primarily an accelerated menopause, progressive skin ageing and non-existent libido. In addition, ailments related to chemo- or radiotherapy can occur if these have been included in the treatment. Mermaids emphasise, however, that it is not just physical pain, but also mental pain.

Asia regained her normal weight a year and a half later. During that time, she struggled with depression and anxiety, and she used the help of a psychiatrist. She experiences a lot of side effects of the hysterectomy. Accelerated menopause, faster ageing, stomach pain, scarring, no libido, and zero sexual satisfaction. She feels like a woman, but has a great sense of loss. “Before the operation, I knew my body and its reactions very well. Now I can’t predict anything. I’m very sorry that I will not naturally go through all the stages of a woman’s life. I won’t experience menstruation any more, the pre-menopause period, a normal menopause... I’ve been getting pissed off more and more recently. Someone took my body, opened it, and decided what should be cut out and what should be left.”

Marlena took the loss of the child very badly. “I’m still trying to deal with that awareness,” she admits.

The chemotherapy damaged Martha’s intestines and bladder. To this day, she has problems with urinary incontinence. As a young woman, she was even afraid to go to a store that didn’t have a toilet. She was also embarrassed by the lack of hair, eyebrows, and eyelashes that she had lost from litres of chemicals. “I don’t know what to expect from my own body. I have flabby skin, sexual problems, unexpected bleeding. My hormones are going crazy.”

In the fourth cycle of chemotherapy, Edyta began to lose feeling in her legs. “My medication was changed at the last minute. Otherwise, there could have been leg paresis. To this day, I have a problem with my feet – I know that I am bending my toes, but I don’t feel it very much. I also suffer from an accelerated menopause. I didn’t know you could sweat so much.”

What is the daily life of mermaids after the procedure? Thanks to the Blue Butterfly Association, Asia went to OnkoRejs [OncoVoyage]; a few years after passing her driving test, she finally started driving a car. She talks about her illness without taboos to encourage women to have regular examinations.

Marlena is under the constant care of a doctor and, as she emphasises, a wonderful partner. She is waiting until her son turns 18 so that he can undergo a BRCA1 mutation test. She is afraid that the boy could pass the gene to his future daughters.

Marta returned to work after a five-year break, she is a seamstress going at full speed. After work, she arranges the garden and cares for her adult children. She admits that she has not planned anything since the operation. Because plans can change in an instant. Just like then in the corridor of the gynaecological clinic.

Edyta spreads her optimism and is glad that her “roommate” allowed her to avert some of the disagreements present in the family before the disease. Her attention is focused on her two-year-old Szymon and four-year-old Zosia. “I talk about the disease in the past tense, and my cancer is treated like a common flu. It’s all water under the bridge.”

Maria is happy every day and is stubbornly trying to have a baby. “I promised myself that when I give birth, I would go to Bydgoszcz with my child. ‘It worked,’ I would proudly tell the doctor who wanted to deprive me of the chance to be a mother.”

 

Author: Marta Gruszecka

Illustration: Marta Frej

The text was published in „Wysokie Obcasy” a magazine of „Gazeta Wyborcza” on 22 May 2021