October 15 is World Breast Cancer Day. By tradition, on this day, we communicate with women for whom the diagnosis has become a personal story, not a read, but a page lived.
Anna Uzlova was diagnosed with three times negative breast cancer in 2014. Surgery, chemotherapy, radiation, but a relapse in 2016. The girl underwent the second course of treatment at LISOD - and since that time she has become not just our patient, but a good friend and even a partner. Today we have a common goal - to help people with cancer diagnoses.
This interview is not about treatment, but about inspiration. About the future through the prism of the past. About help and a standing point. And that each of us can do more.
Anna Uzlova, co-founder of the Inspiration Family Charitable Foundation.
37 years old, cancer survivor. Three times negative breast cancer, BRCA mutation 1. Bilateral mastectomy with one-stage reconstruction. She underwent treatment in 2014 and 2016, complete remission for 4 years.
— Many patients say that the disease changes their lives to "before" and "after". How was it with you?
— Yes, probably, like any stressful event, the diagnosis drew such a line. No matter how trite it may sound, if you mentally return to the past, in the moment "DO" everything seems measured, calm and careless. But "AFTER" there are already many fears and uncertainties. Although, in truth, this is not always the case.
The diagnosis is such a "litmus test" that makes visible all the strengths and weaknesses - both character and the built system of life. And, as a rule, the news of the diagnosis strengthens the strengths even more, and weakens the weak. If there is no support, the process is faster and more intense. If the family was a strong wall, then its reliability only grows, and if not, then alas ... It's the same with friends, work, psychological state and other aspects.
— Has your life and perception of yourself changed due to the diagnosis and treatment of the disease?
— It is not so much illness that changes life, as its consequences and challenges that one has to face.
It is the treatment process that makes significant adjustments. Going through it, you try to stay in the usual rhythm to the maximum, but the side effects are often stronger than the will, so the usual hobbies and rituals have to be changed, and sometimes even to say goodbye to them.
At some point, my desire to live, to try everything, indiscriminately use new opportunities, to focus only on the most important things, sweeping aside details, became very acute. But the more time passes, the longer you are in remission, the more such sensations become dull. I think that's okay too. You can't live at the peak all the time, you need balance.
My close friend, when she noticed that one of my constant worries is being overweight, noted: it means everything is ok, life is back on track. And that's great.
But the understanding that we are mortal remains firmly in the mind. This is the right feeling, which became my life assistant. It makes you move forward, motivates, and sometimes stops in time.
Have I changed? During this time, I have acquired several useful skills. I learned to quickly cope with stressful situations. In such cases, I have an algorithm: from 5 minutes to 1 hour I allow myself any emotions, then I recover self-possession and think about how to solve the problem, I do everything that depends on me, and at any outcome I accept the situation.
I learned and continue to improve the art of defending my boundaries. During and after treatment, you live in a shortage of physical and psychological resources, so you carefully take care of it. And if earlier it was possible to spend it right and left, now you are spending it carefully and consciously.
Sometimes I fantasize that there is a parallel reality and in it I did not have cancer. What would I be then? This question will remain unanswered))
As for professional activity, the illness made my desires and aspirations visible to me. I always wanted to do something useful and meaningful, I saw myself in some kind of charitable foundation or in helping people. Cancer in this case worked as an accelerator. And brought me to the point I was aiming for much faster.
Today I feel 95% in my place, and I left 5% just in case for doubts, so as not to relax))
— Where did you look for support during treatment? Whose was the most important one?
— I am sure that the main support is ourselves. No one can help us, no matter how hard they try, until we find a standing point within ourselves. And already when it is there, the outside world is very important. And the first circle is the family, then friends, colleagues and so on. There are situations in life when the circles change places and strangers become closer. But this is not my story. My support, very strong and reliable, was exactly in this order: husband, family, friends, colleagues.
Support is not always easy. Rather, it is never easy. No one was ready for such tests, each presented help in his own way. We had to learn to speak, explain and negotiate. As strange as it sounds, the family also needed my support. They have their own fears - sometimes stronger and sharper. We did not immediately find the right methods and words, but we had a desire to do it, so we tried to listen and hear each other.
Another type of support, which is often comparable in strength to family support, is interaction with those who have already gone through the path of treatment and understand without words all the pains, fears and sorrows. Well, just a successful experience of treatment is necessarily inspiration and motivation. There I also drew strength when it was hard.
— What helped to abstract and tune in to the positive?
— Distracted by small everyday pleasures. During the first treatment we got a parrot, during the second we took a cat from the shelter. And when there was a year of remission, we celebrated this by taking another cat.
When I was treated for the first time, I was brave enough to go on a bus tour across Europe - the Alps, Venice, Florence. I think it's not even worth mentioning how many resources give us new impressions.
Work helped me a lot to distract myself. I had a wonderful team and employers. I worked according to the schedule that the treatment dictated to me. When I was physically unable to be at the place, I worked from home, on other days I went to work with pleasure. It is very important not to fall out of society during the treatment (of course, it all depends on the physical condition). Work shifts from hard thoughts and helps not to build your life around illness. Sometimes there is such a temptation))
— How did the idea to create the Inspiration Family come about? What is your philosophy about?
— When I was undergoing the second treatment, I became more socially active, began to write about what was happening to me, met my “colleagues on the diagnosis,” including Darina Brikailo. We have a lot in common, in particular goals, ideas and values.
We started to maintain an information page, then the Inspiration Onco Talks project appeared, which included Mila Reutova and the Cancel / R project. In the Inspiration Onco Talks project, we collected offline cancer patients, shared our stories with them, raised sensitive topics that few people spoke about then. Our goal was to support, inspire and motivate those who need it. Actually the very word “Inspiration” was the key here.
We had an idea to hold a big event in Lviv. This was the starting point: the word Family was added to Inspiration . We saw what a great need there is for such events, but at the same time the culture of the patient movement is not developed, as, for example, in the West. And since we love to change the space around us, we realized that we need a larger scale. This is how the Forum for Cancer Patients and Cancer Survivors Day (now annual) appeared.
— Inspiration Family is the organizer of several projects that you have already mentioned. How difficult is it for a public organization to implement them on their own? Who supports and inspires you?
— Our first events were a real fire baptism, a test of strength and a test for the team. Our fuel is enthusiasm and desire to change the world for the better. Sometimes it was very difficult, but the result obtained is our inspiration for further movement forward.
It was rather difficult to get support for the first event, few people knew about Inspiration Family then. First of all, we turned to those who know us personally and with whom we have established trusting and friendly relations. One of the first and constant partners was the LISOD Hospital, where my colleague and I were treated. Such support is especially important in the initial stages, when, in fact, you are trusted on credit. Now, of course, they know us better, it has become easier to find “ideological allies».
We have many other projects and plans, we are expanding our activities. To be able to do more, we have registered the Inspiration Family Charitable Foundation - a fund to support adult cancer patients. This is an important step for us and a new stage of development.
— In your opinion, how strong is the influence of patient organizations on the situation in medicine? Can ordinary people become "engines" of reforms?
— During the first treatment, I read the book by Siddhartha Mukherjee “The King of Diseases. Biography of Cancer ”- and it became a revelation for me. It describes not only the history of cancer as a disease, but also the history of the search for drugs, causes, transformation of approaches to treatment. A separate part is devoted to the movement of enthusiasts who drew the attention of society and the state to the problem, sought funding for research - and how, under pressure from activists, US President Nixon signed the National Cancer Law. And although the "crusade" that was originally conceived was not fully realized, what we have today is the result of the tremendous work of activists.
The number of patient organizations that are now appearing in Ukraine indicates a colossal volume of problems in the medical field. Social activity in society has grown - and we began to understand that much is in our hands. The state needs to show a request, because if there is no request, there are no problems. This is a well-known state of affairs. Our task is to help government officials to get in touch with reality, to show the picture that really exists.
All over the world, patient organizations have weight, they are listened to, they are involved in solving problems. In Ukraine, everything is not so rosy yet, but the situation is gradually changing. The state begins to turn to us and hear the voices of patients.