Three years ago, Agnieszka Szeląg from Toruń in a flimsy dress and blonde hair was spinning in a prom dance with her boyfriend. She passed to psychology, loved the theater, was planning a wedding.
Three years later: interrupted studies, loneliness in the four walls of the room and a bald head hidden under a scarf. Her body, her face, as if given anew.
But the present, which is so different from memories, is also the girl’s heroic fight for her life. For joy, optimism and a sense of importance, despite a sore body that may not be what it used to be. Agnieszka is still the same person, although different. More mature and wiser, because she knows how big a gap can divide yesterday from today, how fragile is everything that seems permanent and permanent.
She is 22 years old. Three years ago she fell ill. After months of anguish, persistent headaches, fainting, vomiting and depression, she underwent an MRI scan. There was a visible tumor diagnosed as medulloblastoma. He placed himself in a place that was difficult to operate. In the cerebellum. However, urgent surgery was necessary for the patient to survive.
– Just imagine what a young girl in love, a psychology student, feels when she learns that she has something like that in her head! That he may not survive the surgery, and the side effects are terrible. That even if she survives, she may not be what she used to be. It can become a “plant” – says Agnieszka.
But there was no other way out. Christmas was approaching. Mom brought home a fragrant Christmas tree. At the hospital, they decided to postpone the immediate surgery after Christmas. So Agnieszka is waiting. The bomb in her head is ticking and she is thinking: what next? What’s next?!
– Medulloblasatoma, or medulloblastoma, is the primary malignant tumor of the central nervous system that most often develops in the cerebellum. It belongs to the primitive neuroectodermal tumors (PNET). It is a tumor with the highest grade IV histological malignancy according to WHO and the most common cancer of the central nervous system in children. This type of tumor is very rare in adults and accounts for about 1% of adult central nervous system tumors, explains Dr. Andrzej Swincow, specialist in neurosurgeon, head of the Department of Neurosurgery, Neurotraumatology with the Department of Therapeutic Improvement of the University Hospital No. dr J. Biziel in Bydgoszcz. – The specificity of this tumor is that in 2% of cases it is located in the cerebellar worm. It also metastasizes to other parts of the brain and spinal canal via the cerebrospinal fluid. The incidence of changes in the form of dissemination in the subarachnoid space of the spinal canal ranges from 75 to 3%. In about 30 percent. cases it metastasizes – most often to bones, lymph nodes and lungs.
Is surgery the only way out of the situation? Is it always possible? – Surgical treatment, preferably complete, is absolutely necessary – explains the doctor. – The greater the completeness of tumor removal, the better the prognosis. However, in cases of disseminated neoplastic process, surgery is not recommended. The advisability of re-surgery when the neoplastic process is resumed should also be considered. Surgical treatment of recurrence is contraindicated, except in the case of children under 3 years of age who have not received radiotherapy and have only received chemotherapy. In each case, however, radiotherapy of the cerebrospinal axis with the use of high-energy radiation is recommended. In some cases, adjuvant chemotherapy is also associated with a high risk in patients. In some cases, there is a possibility of teleradiotherapy with the use of a “gamma knife”.
With the day of tumor excision, Agnieszka began a new chapter in her life. Long-term, interwoven radio and chemotherapy treatment. Periods of depression and breakdown. The ordeal of rehabilitation and the need to reevaluate your whole life, adapting to a completely new reality, marked by a serious illness.
Agnieszka: My fight with the disease lasts tirelessly for the third year. After the tumor was excised, I was affected by all possible side effects. The right part of the body was paralyzed, I lost my speech and vision, I was not able to move my arms and legs on my own. I have become that unfortunate “plant” who, however, feels and thinks! And it understands everything that is happening around you.
He wants to get out of bed and go to the bathroom. It can’t.
He wants to reach out for a cup of water. Can not.
I want to tell my loved ones something. Bełkoce.
He strains his eyes because the world has broken down and it can’t cope.
He tries to smile, even with the corner of his mouth, and it is an insurmountable effort.
In the mirror, she sees her face swollen through the fog, and her heart screams: it’s not me!
Dr. Smircow: The side effects of surgery are seen and what they are depends primarily on the location of the tumor. The most common are cerebellar syndromes, i.e. paresis, emotional disorders, a significant reduction in IQ and deterioration of psychophysical functions. About 12 percent. patients with this disease show a normal level of intelligence IQ (in most cases there are significant developmental disorders – emotional, behavioral, speech, reading and writing disorders). A small percentage of children with this disease attend regular schools, which rarely take up normal work.
After returning home in January 2009, Agnieszka felt relieved. Finally at home, in my room, close to my mother, brother and boyfriend. Nobody tells her directly that she has malignant cancer. Mom, aunt, boyfriend and brother show tremendous support. Unfortunately, there is a breakdown after the operation. The girl does not want to undergo rehabilitation. Psychologist’s help needed.
– It was scary. My world, my youth. Everything fell to rubble. When my mom told me that I had to pack for the hospital again, I became hysterical. They had to pull me out of bed by force. They dragged me out of the house like a convict. I did not realize that this was just the beginning of regular visits to oncology, radio and chemotherapy. My hair fell out in handfuls, my body was swollen, my face was horribly disfigured. And I also had to fight for a life that was not optimistic at all – says the girl.
At the beginning of 2010, Agnieszka undergoes eye surgery in Gdańsk. It partially regains its former visual acuity. This strengthens her a bit, restores self-confidence. When the neurologist praises the progress in speech retrieval, the girl shows what she can do. She begins to speak. Slowly but surely articulates every word and thought. She can tell again what she needs, what is bothering her, what she feels. She knows that she has to talk, she has to go to the bathroom herself, grab a cup of coffee, use a spoon herself… Perform a whole lot of mundane activities or else she will annihilate herself. When she manages to lose a few kilos, shyly takes out old jeans from the wardrobe. Maybe the hair will finally grow back too?
– The disease overturned my whole life, forced me to completely reevaluate it. I had terrible moments of breakdown, staring out the window for hours. It was very difficult for me to reach this inner strength and motivation to accept what happened and take life in its new dimension. Do what I can do and not miss what is no longer there. Unfortunately, my boyfriend couldn’t stand it. He left me in October 2010. I have no grudge against him. I know how hard he tried, I remember how much he helped me. This is a burden that I can barely bear on my own …
However, it has never been so that there were no people around Agnieszka for good. Her friends from school and teachers visited her. Strangers appeared and offered to help. There were situations and events that she would never have thought of before. The friends organized – and still do – charity concerts and cultural events for Aga’s rehabilitation, someone will call and talk, someone else will send a few pennies. The psychologist refused the fee for the sessions.
– I have to express it. That I feel so grateful. Some people surprised me. Their acceptance, awareness and simple, simple kindness rebuild in me self-confidence and the dignity of my life. Because if I have not been rejected as I am now, it means that my existence is meaningful. That I am following a path that is only known to God. That I don’t have another one – the girl confesses.
Post scriptum: Cancer attacked again last year. There are metastases in the spinal cord. Agnieszka suffered from excruciating back pain for many weeks. She survived this too. She still has many chemotherapy sessions ahead of her, but if it goes well, she will say with pride in a few months: I’ve won another battle. Friends continue to support her. You can read about Agnieszka and what is happening with her at www.agnieszkaszelag.pl
Also read: Brain tumor – symptoms, diagnosis, modern therapy