Fighting for Life on Two Wings — the Story of a Woman with Cancer

სოფო აფრიამაშვილი
სოფო აფრიამაშვილი / მედია აპრილი

Eter Kurasbediani is a cancer patient. She was diagnosed with cancer three times. First diagnosed with breast cancer in 2021, she underwent surgery soon after and thought she had beaten the disease, but almost two years later, she suddenly lost her sight — cancer metastases had spread to her head in a way that was not detected in any studies before she lost her sight. Doctors in Georgia found it difficult to make an accurate diagnosis. While waiting for a definite answer, Eter’s disease progressed, so she decided to go to Germany with her own funds, ask for asylum and continue her treatment there.

All necessary medical interventions and drug treatment were financed for the cancer patient who arrived in Germany. A timely decision and appropriate medical intervention saved her life. However, the recovery process was not complete when she had to leave Germany based on a letter from the Ministry of Health of Georgia that she would be able to receive treatment in her homeland. Arriving in Georgia, the reality was completely different.

Eter continues to fight against cancer. While in Germany, her initial diagnosis was accompanied by leukemia. Now a single mother living in Georgia, whose income is up to 400 GEL of social assistance, is fighting for survival. She tries to defeat the disease, and along the way she has to deal with the obstacles created by the state along with the cancer.

Currently, she receives one of the medicines necessary for life from an American charity organization completely free of charge. This medicine is not financed by the Ministry of Health of Georgia. Eter Media tells Aprili that one of the decisive roles in saving her life was played by Western aid and this process continues. However, the woman fears that the Russian law may lead to the exit of the organizations that play a major role in keeping her and other cancer patients alive.

How I Found Out about the Diagnosis

I was diagnosed with breast cancer in January 2021, then the disease was in the first stage. Soon I underwent an operation, then a course of treatment, radiation therapy, and it seemed that everything was fine, but at the end of 1 year and 9 months, I suddenly lost my sight. For the first few days I could see very little light, and for the next two weeks it went back and forth day by day, until finally I realized that I was completely blind. I couldn’t see anything anymore. The only gray streak was visible above, everywhere else it was total darkness.

I thought everything was over. The doctors could not tell me anything precisely. They said that I should do chemotherapy and see what happens after that. This period was complete darkness in the literal and figurative sense of the word, because I lost my sight and could not see what might happen tomorrow.

All I knew was that the disease had returned and returned in very bad forms. I found myself in a much more difficult situation than the first time, because in addition to everything, I could not get answers to my questions, and meanwhile time was passing and I was gradually getting worse.

It’s one thing when they tell you once that you have cancer, then a second time, and then a third time, I don’t know, it’s hard to tell.

Sofo Afriamashvili / Aprili Media

The First Encounter with the Diagnosis

At first, when I heard it, I didn’t know much. The first thing you think at such a time is – why did it happen to me anyway? You no longer think that you are not alone – only in Georgia, 10-11 thousand people are given this diagnosis every year. But still you think – why me? You are afraid, desperate, depressed.

You can’t think, as if everything is closing. When you’re making plans, you think, I’ll do this in the spring, I’ll do that in the fall, and suddenly you’re in the dark. It’s like being thrown into a closed room and you don’t know what to do. This is very difficult to understand and accept.

There was a moment when I didn’t know whether to comfort others or comfort myself. At this time, you think, don’t make your mother nervous, don’t make your wife nervous, don’t make your child nervous…

Then comes the stage when you start looking for information. The first question that comes to your mind is how long a person with this diagnosis lives, and for this you turn to social networks and Google. I used to say then that when a person goes to prison, they still know when they will be released. Perhaps it is important for us to know some deadlines. That’s why we read so many things.

The next stage is adaptation. It is very important for the patient to aim for life and not give up. If you let it go, I think fear kills a person much sooner than any other disease.

Relapse in Georgia and Germany

When I lost my sight, the most difficult thing was that no one in Georgia could tell me anything for sure. Ophthalmologists said the metastases had spread and caused blindness, but oncologists couldn’t confirm, they were discussing. Before that, I had tests every three months, but none of the tests showed that the cancer was progressing.

I knew very well that a person cannot go blind so suddenly and I thought that the tumor had spread to the head. I had to do something.

During this period, I covered all the necessary research and visits at my own expense, because I didn’t even know what was wrong with me. I decided that I couldn’t wait any longer and went to Germany at my own expense, where I requested asylum. There, they soon confirmed that my blindness was caused by cancer and the spread of metastases.

 

As it turned out later, the decision that I would not wait for anything in Georgia was the most correct step, which gave me a better chance of survival.

However, emotionally, going to Germany was not easy. I was going to a foreign country completely alone, I had to leave my young children behind, and I didn’t even know if I would see them again.

During that period, the only person who was by my side was a girl who also had cancer, whom I became friends with because of this diagnosis. I couldn’t even move without it. A complete stranger turned out to be my closest friend.

The only thing that made me dare to go to Germany was that I knew the language.

Then I had only one thought – how to survive.

Fear of Separation from Children

When my relapse was confirmed in Germany, the first thing I asked was how much time I have left. They told me that it would be difficult to say exactly, but that you would probably live a year as a result of the treatment.

The first thing I imagined was what my children would do in this one year. And I could not spend this one year as I planned yesterday and the day before yesterday, when I thought everything would be normal.

At this time, every minute you try to breathe somehow, but you don’t have the chance. You don’t even see a ray of light to do something, or what to do when you know you don’t have time.

Sofo Afriamashvili / Aprili Media

I cried for myself and started thinking about what to do next.

I decided to do what I wanted as long as I was alive, but I didn’t do it because I thought I would make it tomorrow. I decided to bring my children for however long I had to be in Germany. There was a difference of opinion among relatives that the children would be stressed, but it was also inevitable that if I was no longer there, the children would still be stressed. I couldn’t avoid it. That’s why I wanted to spend at least this period together for them to remember their mother. At that time, the eldest was 9 years old, and the youngest was 4. I was especially worried about him, I wanted him to remember his mother.

Asylum Request and Rejection Due to Georgia

The treatment in Germany paid off. Although I went through the most difficult period, I was in the palliative care unit for two weeks, timely medical care worked. I survived

If I had waited and stayed in Georgia, it was impossible for me to have any chance of survival.

In Germany, all the conditions are there for the patient, in addition to receiving medical services, to have the appropriate mood, strength and sense to not stop fighting. There is no medical manipulation to be carried out without a preliminary interview, everything is explained to you, what may follow, and you are somehow accustomed to the dangers. Also, they offer you psychological help. If you refuse, they still ask you to try, because for an oncologist, the mood is of great importance to overcome fear and continue the fight.

I requested asylum in Germany during the treatment process. There they ask you why you are asking for asylum. I stated my reasons, explained my situation in Georgia. I knew how my further news would develop here, because I had stopped all help, I was already a single mother, and there was no need to talk about work and the possibility of work.

In the process of verifying the information, Germany referred to Georgia. The answer came from the Ministry of Health of our country that I had the opportunity to receive the same treatment in Georgia and that everything was financed. Because of this answer, I was refused asylum in Germany and I received a letter that I had to leave the country. I had no other choice and I obeyed. I returned to Georgia.

The Reality of Georgia VS the Letter of the Ministry of Health

I came back, but here, unfortunately, I did not find the reality that was described in the letter of the Ministry of Health. That everything is financed and the cancer patient is fully insured is not really true. This applies to both the drugs and the periodic tests necessary to manage the cancer.

Unfortunately, this is such a disease that needs constant control. In fact, the disease escapes and the doctors catch it.

This requires timely research, which is not cheap. It is impossible for a person like me, who is a single mother, has no income, depends only on a pension that does not even reach 400 GEL, to cover even one manipulation or buy medicine.

Personally, my therapy costs about 7,000 GEL per month, in addition to that, I have to undergo research every three months, which costs at least 2,000 GEL.

As a rule, universal health care covers the cost of medicine, but after returning from Germany, that is, since April, there have been several cases when I needed a specific medicine that is essential for my life and Georgia was in short supply. At such times, we are forced to buy medicine from the so-called black market, which is not always financially possible.

When the medicine costs within 5,000 GEL, how should a person be able to buy it? They can’t do it. That’s why every day on social networks we see requests for medicine, whether someone has it, sells it or gives it as a gift. We constantly have to ask our friends, sometimes relatives to collect funds, and this is how people help each other.

If all this was ensured, as the Ministry of Health says, is it possible that such a general situation would have arisen in the country?!

Problems also arise in research. For example, two months ago I had a study, where it appeared that I had a lump in the lung area that required a doctor’s decision, which in turn required additional research. I applied to the Ministry of Health for this, but I was denied funding because I had already funded another study that month. However, during cancer, each day is important.

Who Do We Turn to When the State Cannot Help Us?

I was diagnosed with cancer three times. The third time I was in Germany, during the course of chemotherapy, I was told that I also had chronic myeloid leukemia. It is a chronic disease that requires constant medical treatment. In Germany I was prescribed a medicine that I must take every day as long as I live, because nothing else helps.

Returning to Georgia, I discovered that this medicine is not financed by us at all. With the help of one of the hematologists, I learned that this medicine is imported into the country and given out completely free of charge by the American Charity Foundation. I immediately sent all the necessary documents, and since then I have been receiving life-sustaining medicine, which is not financed by Georgia, for free.

However, recently I had doubts that due to the situation created in the country, including after the adoption of the Russian law, there are threats of similar organizations leaving the country.

I cannot say exactly what will happen to this organization, but there are organizations that will not be able to continue their activities and do useful work for many people in the background when the state itself cannot provide citizens with what these organizations offer to people.

Sofo Afriamashvili / Aprili Media

Of course, as a cancer patient, I would prefer my state to help me. Believe me, not a single person suffering from cancer wants to live abroad, somewhere in a camp or a refugee shelter. Everyone prefers to be with their loved ones and in their home, but when this is the case, we run away.

When you, as a state, cannot provide your citizens with many things, you should not interfere with those who help you and do what you need to do.

I want to live, I have no other interests. Neither me nor other patients.

Russian Influence on Cancer Patients

Eter is a member of “Union for Life”, an organization that fights against cancer-related stigmas. From 2024, the organization is actively fighting for the funding of medicines and research necessary for the lives of cancer patients. It was their organized actions that led to the addition of 23 types of medicines to the list of medicines to be financed by the Ministry of Health.

When Eter talks about the suppression of non-governmental organizations by the state, she means the organization “Union for Life”. As the founder of the organization, Gvantsa Apkhaidze, tells Aprili Media, they are not going to register in the register of “organizations channeling foreign interests”. According to her, despite the fact that the organization was involved in volunteer activities, this year their activity has moved to another level. They aimed to help oncology patients, who cannot receive appropriate financial support to fight the disease in Georgia, in mobilizing appropriate funds. Mobilization of funds was planned mainly with the help of international, western organizations.

“Georgia does not finance preliminary studies and some of the medicines that are needed to save people’s lives. Often, cancer patients and family members even have to sell their homes for this. Until now, the only way we had was to go to EU countries and get social assistance there, but after the government’s announcement that patients in Georgia can get the same treatment, we have a lot of deported cancer patients.

Unfortunately, the adoption of the Russian law prevents us, non-governmental organizations, from sending a voice to the European Union countries to let them know that cancer patients are not really safe in Georgia today. We protested this law and we are not going to register as agents. Therefore, I do not know how the organization should continue to function. It is true that until now we have done everything voluntarily, but when it comes to such tangible projects as the financing of medicines and researches, we cannot do anything with our bare hands and international assistance is important. “We have not yet started international activities, now we are taking the first steps and we are already being hindered by this law,” says Gvantsa.

The Russian law created problems for the organization supporting cancer patients “Children’s tumors and superheroes”. The day after the approval of the law, the organization issued a statement that it would not be registered as an “agent”:

“We are not going to register as an agent of influence of foreign powers in any register. To hear from all the people who tell us that this law does not apply to children and people with disabilities – you simply do not understand the essence and meaning of this struggle…

In such conditions, our organization will not be able to continue its work, and children with cancer will not have a better future in this country,” the organization wrote in a statement published on May 29.

“Children’s tumors and superheroes” also explained that precisely as a result of their activity, from August 2023, the state finances the treatment of cancer patient children abroad.

Gvantsa Apkhaidze cites the example of this organization and says that in the future the Russian law will eliminate those non-governmental organizations that fight for the rights of people, including the right to life, who cannot do it on their own.