When I initially went to the doctor, the malignant tumour was not detected immediately. The doctors were sure that the tumor found in my brain was a benign formation. But after the first operation and histology, a terrifying diagnosis was revealed. I was diagnosed with epithelioid hemangioendothelioma, malignant or simpler soft tissue sarcoma of the parietal part of the head.
There were no particular symptoms. One day I was sitting on the sofa and rustling my hair, and my fingertips felt a kind of bump. I didn’t pay any importance to this. A couple of weeks passed, and I again felt the tubercle. It had already grown bigger, and I asked my daughter Darina to take a picture of it. In the photo, we saw a red, almost burgundy bulge. We decided together that it was a strange pimple.
I had an idea to squeeze it out or pierce it, but my daughter was against it, so my attempts to persuade her to pierce the “blister” with a needle were completely rejected. My husband, who was far from medicine, did not immediately like the whole story with a pimple on my head and insisted on a medical examination. However, I was not frightened by the bump and didn’t hurry to do something. I was sure it was a minor problem in my head, and It would go away by itself.
Within about a month, the “pimple” underwent metamorphoses: it grew, I scratched it, and it began to bleed. I tried to treat it with Iodine & brilliant green, but it did not help. When I could not stop the bleeding from my head for several minutes, finally, I had to see a doctor.
I had to go for surgery and also gave a histology test, and the test finally showed that I had cancer.
My first reaction to the news
On the 14th day after the first operation, the doctor and I went to the surgeon’s office to check if the histology analysis had finally arrived. The result was that I had cancer. I did not believe it. I said that It couldn’t be the truth. Something is wrong with the analysis, and the report is not mine. I asked to check the full name.
In general, I was shocked. The doctor explained that one more operation was required, but I couldn’t stop thinking and mumbling that this was all one big mistake. But unfortunately, there was no error. The test results were rechecked by several of the best oncologists, not only in Belarus because the type of cancer turned out to be rare.
I told the doctor that I refused to go through the operation or take the treatment, and he told me that this was my choice and that nobody would force me if I chose not to have the treatments. It was Wednesday, as I remember now. From the clinic, I walked to the car on cotton feet. I sat down and googled. In some articles, it was said that there were very few people like me in the world, just 35 in 2017.
I decided that by Friday, I would prepare a well-grounded speech for the board of doctors. I have a PhD in economic sciences, and I know how to convince people. Doctors should definitely believe me when I say it is not cancer, and this is a big mistake. For two days, I thought about my speech, summed up the evidence base, and threw in the main theses, the introduction, the central part and the conclusion.
At the same time, I continued working. I was confident in what I knew and did not even cry until Friday. Finally, after going through the process of acceptance, I had to make peace with the diagnosis and start the treatment. Once I accepted, it was easier to go through surgery and the course of chemotherapy. Since I was only diagnosed with the first stage, I decided that medical treatment was enough and did not go with any alternative medicine.
My emotional well-being through the treatment
Everyone supported me a lot. My family, specifically my mother, a doctor, my daughter and husband, and my doctors and friends, were there for me. Even all my followers on Instagram were supportive. I’ve started storytelling about my situation under hashtag #мояисториясаркомы and got numerous kind words and warm virtual hugs from Belarusians and people all over the world. They were very thankful for my decision to share my thoughts, story, feelings and pain.
I continued to work and tell stories while going through the treatment and also had the opportunity to talk to a psychologist in the medical centre, which helped my mental and emotional health a lot.
My experience with the doctors and the medical staff
We have powerful oncology medicine in Belarus. After the Chernobyl disaster in 1986, oncology has been one of the main problems in Belarus. I can confidently say that I’ve got all possible and the best high professional treatment.
Things that helped me through this difficult journey
I believe optimism was one of the main things that got me through this. I was surprised to learn the patience I had with myself through the treatment process. I started sharing my experience of passing, verifying and surviving the treatment on my Instagram and Facebook accounts. I’ve got thousands of messages from people asking me to continue sharing my journey and telling me about everyone who decided to check all strange neoplasms on their bodies. That was something that motivated me immensely.
When I heard the news that I was cancer free, my friend Inna was with me. Deep inside, I was afraid of a negative answer, but externally I was 100% sure that the chemotherapy and treatment helped and that the result would be clear.
Things that kept me motivated through the treatment
When there were times when I felt that everything that was going on was too much and during those times, and I reminded myself of the situation in Belarus after the elections when hundreds of people had been arrested since August 2020, I considered my pain to be incomparable with the pain of all the people and the conditions in which they were kept in prisons. That gave me the strength to keep going.
The lessons that cancer taught me and how it changed me
I’ve seen so many women and men struggling with cancer who understood the end of their life, but they were still optimistic and even joking. That’s why I believe there are always those who feel it is worth it. So, my complaints and pain felt minor compared with the “no way out” diagnosis that many people get.
After going through the cancer journey, I have become indifferent to many problems that I considered significant before cancer, and perhaps, I have gotten better at prioritizing today.
My support group
My support group were my close people and readers of my story on social networks. Besides, I had a very professional psychologist in the medical oncology centre, so it was enough for me. I felt I had the strength to help myself and those women I met during treatment. We are good friends now. And I’m 100% certain support groups are essential for those who are on the way to losing hope or who think they are not strong enough to survive and overcome treatment by themselves. People are very different. That’s why any supported instrument, specifically support groups, is demanding.
Stigmas attached to cancer
I think the stigma is a huge problem today, and that is why your organization is like a sun in the night, and your work helps to understand how the treatment works. Before the treatment, I couldn’t even imagine that chemotherapy was not just one pill but long hours of systematic drop counters. I have come to understand why cancer patients are yellow and why they usually walk on a cane, even young and many other things.
My message to cancer patients and caregivers
One piece of advice I would give is to be patient and stay optimistic. Even if the end is near, live it as interesting as possible for yourself and deliver as few worries as possible to your loved ones. Sometimes you can cry, but not often. I believe depression is a luxury that you should allow yourself after a full recovery. While you are fighting, you need strength to win, and it is best to focus on that and nothing else.
People must pay attention to all their incomprehensible formations on the body, see a doctor in time, take care of themselves and be less nervous.