Women behind the pink ribbon

Author: Sofi Mdivnishvili
11.12.19
Edition: Fear

Mari Bobokhia only cried once after she found out she had breast cancer.
 
She broke down when she thought of her child growing up without her. Then she dried her tears, set her fears aside and dedicated herself to beating the disease.
 
Breast cancer is the most common, and the most deadly, form of cancer in Georgia.  While early detection can save lives – Mari Bobokhia's cancer is in remission – women are still dying, sometimes for no other reason than they lack the money to pay for treatment, notes Ana Mazanishvili, the president of Europa Donna Georgia and a co-founder of Pink Space.

Pink Space is a center for women with breast cancer, a safe place to tackle the fears associated with the disease. Pink Space arms women with the information they need to fight the disease and receive government assistance. It also tries to provide solace and comfort by creating a community for women survivors to turn to when they need help.

To survive cancer, both financial and emotional assistance are vital, notes Nino Berishvili-Sikharulidze.

But too often women do not have either.

While the Georgian government provides free screenings and some financial assistance for chemotherapy and other treatments, cancer treatment is still prohibitively expensive for many. The state-funded Universal Health Care program finances between 50 to 70 percent of treatment costs for low-income citizens, with a focus on those who are socially vulnerable and qualify for social assistance. Georgian citizens whose monthly income exceeds 1,000 lari (approximately 340 dollars) receive funds only for chemotherapy and hormone therapy. They can also receive some additional finances from their private health insurance but this depends on their insurance package. A person who earns more than 40,000 lari a year does not get anything from the state.

Families sell their homes, go into debt, and still struggle to find the money to pay for treatment.  In some cases, Ana says, women refuse to even tell their families about their diagnosis because they know they cannot afford the treatment.

"Why do people who are struggling with this diagnosis have to think about raising money, instead of focusing on how to encourage themselves, how to find the strength to deal with it?" she asks.

Sofi Mdivnishvili photographed five women who are overcoming their fears, and are surviving and thriving despite their diagnoses.

I was 26, and three months pregnant when I noticed the bump. I was told that I needed a biopsy but I refused due to my pregnancy. I had a caesarean section at eight months. The bump was already getting bigger.

At that point, I started treatment, which required 200 to 400 lari every visit. My relatives and friends helped me financially. My brother even took on a lot of debt to help me. My mother mortgaged her house and helped me care for my baby. I also received government assistance so a portion of the chemotherapy was covered.
 
I was diagnosed with malignant mammary tumor, stage 3. I felt bad during the first course of chemo, so the infusion was stopped after three minutes. Once I understood the seriousness of my diagnosis, I became very afraid because I had a small baby to raise.
 
After the fourth course of chemotherapy, the tumor was removed. By that time I had lost my eyebrows and my eyelashes. I started to paint on eyebrows and wear hair extensions.
 
I had four more courses of chemotherapy. Now I go for a check up every six months. Unfortunately, no one covers this expense so I have to pay for it.
 
My case was very bad, and doctors were afraid I wouldn’t survive. Very close attention was paid to the affect on my eyes, due to my myopia. There had been a risk that the chemotherapy would harm the retina in my eye. But due to my strong constitution, I overcame this, too.
 
In addition, I was unexpectedly diagnosed with Hepatitis B. I was prescribed a medication that I have to take every day.
 
The state assistance does not cover these expenses, and the medication costs 150 lari every month.
 
I am afraid the cancer will come back. My mother passed away a year ago, and that made my fear stronger. My only hope now is little Gabriel. I will do my best to overcome everything because of him.
I was afraid of death, especially afraid of the fact that I would not be there for my child. I was afraid of death but I stood strong. Chemotherapy was very difficult. By my fourth infusion, I thought to end the process, because it was hard to endure.

I gained weight; my nails and teeth were slowly breaking. I lost my desire to live, and I didn’t want anything anymore. But exactly at that point, my doctor told me we would start a new course of chemotherapy, which was weaker, and I would be able to resume an active life.

I was 28 when a 9mm tumor was found during an examination. It took several months to analyze it. I was diagnosed with malignant mammary tumor, stage four.

Going to the doctor is expensive. I had 10,000 dollars in savings, and that was only enough to cover the analysis and several courses of chemotherapy. Now my parents pay for my treatment, they had to sell the house. The government only finances 18 months of treatment. I receive 120 lari (41 dollars) a month in disability assistance.

My diagnosis was so serious, it seemed petty to think about my appearance but I felt horrible about losing my hair. I had a hard time even thinking about my cancer diagnosis. I used to look in the mirror and see a stranger. I felt pity and pain. But, after some time, my hair started to grow back, more beautiful and full of body than before.

  I understand that there is a danger the cancer could come back and I could be back where I started. I am in the first stage of treatment now, I haven’t finished anything yet and a lot more time is needed. But I believe I can defeat cancer and return to my old life.
In 2017, when I was 54, I had surgery on my uterus. When I was released from the hospital, I saw for the first time, I had been in the cancer ward. I didn’t even know where I had been. My children had hidden it from me because I was so emotional.

Three months later, I went to the doctor for a checkup. During that period, I had noticed a redness around my breast, although genetically, no one in my family had been diagnosed with breast cancer. During the visit, the doctor told me they had made a mistake. When he examined me, he told me “You have cancer, look over there, 3,000 breasts have already been removed.” I went to another doctor.

In the hallway, I started thinking about my two children. I had to see them grow and be happy, and this was happening to me. I looked around and saw 19 and 20 year-old girls. I was crying and, at the same time, I was ashamed. I was already a mother and they were still very young. They should not see me in this condition. I pulled myself together. That was the same day I met Ana Mazanishvili. I will trust her till the end.

I underwent the surgery and they did not find anything to worry about. I had a course of chemotherapy and radiation therapy and, after that, I started to visit the Pink Space. I met so many wonderful people here; sometimes I think I would never have met them if I had not had cancer.

When someone is in this situation, he or she should not worry about how to pay for it. The state has reimbursed me for some of the costs. Free screening does not mean that everything is free. On the contrary, if something is found during an examination, then the trouble starts.

I do not think about how this could all start again one day. I have forbidden myself from thinking about it. I believe that this disease treats you the way you treat it.
More than 10,000 cancer diagnoses are made in Georgia every year. A fifth of the cases are breast cancer. This makes breast cancer the most prevalent and the highest cause of death. After I was diagnosed with cancer, I met many other women like me, but there was no place for us to meet and talk. That is where we got the idea to create the Pink Space.

The primary goal of our organization is to raise awareness about breast cancer, provide access to information about treatment and to provide social support. We try to explain the importance of a timely diagnosis. I am a living example of this. I learned I had cancer when it was still in the first stage, six years ago.

The basic package provided by the Universal Health Care program finances between 50 to 70 percent of the treatment for low-income citizens. That assistance covers the costs of chemotherapy, radiation therapy and surgery.

One of the most important medicines is bisphosphonates, which everyone who undergoes chemotherapy requires. This medicine cost between 6,000 - 7,000 lari. Now, our organization and our state fund a portion of this medicine for patients.

In fact, rehabilitation and palliative care services do not exist in our country. Why do people who are struggling with this diagnosis have to think about raising money, instead of focusing on how to encourage themselves, how to find the strength to deal with it?

The situation is even worse outside of the capital. The women living there hide their diagnosis, knowing full well that they can’t cover the costs of treatment. That's why they get such a sad result.

I had a double mastectomy. Despite this, these women and I maintain our femininity, and we have reevaluated many things in life...We became stronger and I sincerely want other women to believe that cancer isn’t really a judgment.

Ana Mazanishvili, the president of Europa Donna Georgia and a co-founder of Pink Space. 
In the age of 31 I have accidentally found out about my diagnosis. I was worried about one thing, how to tell this to my family members. It was not easy to realize I had a cancer and I should have disappeared soon. Most of all I was worried about my kid who was not even 8 years old. Despite this, I cried only once, then I told myself that it was necessary to survive and since then we are like this.

I had not thought how would I feel without breast, I was agreed on anything to be saved. Until everything was cleared up, I was nervous about financial sides, I had no idea how much would be necessary. But it came out that almost everything was financed, but it does not mean that the government will cover everything. It was my case that I did not exceed limits.

Despite everything I managed looking physically well. Desired to be hundred times beautiful, not to be like a sick person and really no one believed that I was fighting for cancer. The only thing that never leaves you mind is the fear of recidivism. I try not to think too much about it, but in every six months on examinations I die and reborn.
It is important what kind of attitude you will have to this disease, all kinds of fear is getting backwards when you stands steadily and I stood like that for my son’s eyes and future.
Nino Berishvili-Sikharulidze
Nini Tsiklauri
Lali Tatishvili
Mari Bobokhia
Ana Mazanishvili
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