Barbara Górska has been living with ovarian cancer for 9 years. This is the time of fighting, taking chemotherapy. All the time, however, he has a “grandfather” who does not want to let go. Statistically, as a doctor once told her, she should be dead.
- When Barbara Górska heard the diagnosis, she started getting ready for the worst
- Her daughter was little then. Barbara wrote a dozen or so letters to her – for communion, for a wedding. So that my daughter would always feel her presence. No matter what happens
- The communion letter is no longer available. And Barbara doesn’t give up all the time
- More information can be found on the Onet homepage.
It was difficult for us to arrange this interview …
Indeed, it is often the disease that determines the rhythm of my life. I’m on chemotherapy right now and needed some time.
Today we are going to talk about an insidious disease that is difficult to diagnose and has no symptoms for a long time. What were your experiences?
Ovarian cancer causes non-specific symptoms that may be confused with, for example, gastric problems: abdominal and back pain, diarrhea and vomiting. It was similar for me, and the diagnosis took a very long time, almost half a year. I was young, I was in my twenties, I was a mother of a girl and a half. Nobody considered the cancer scenario in the lead role at all. Even my gynecologist, who I looked after throughout my pregnancy. Stress was supposed to be the culprit of malaise, and the family doctor recommended tranquilizers and a slower pace. However, the symptoms increased and when I could not straighten without pain, I knew that something was wrong and I did not let go of the topic.
What were the first thoughts after the diagnosis?
I started looking for information and it was not a good decision at all, because the statistics in ovarian cancer are not optimistic. The first question was: how much time do I have left? Then I began to think about how to organize my life so that after my departure my daughter, husband and loved ones would have as few problems as possible, and would be safe. I knew the worst could happen …
No light in the tunnel? Nothing at all?
The diagnosis fell on me like a bolt from the blue. The sky was clear, but the thoughts were black. Then it changed and I decided that I would do anything to live after all, to raise my daughter. I couldn’t imagine another woman doing it …
It was then that I felt the support of those closest to me: my husband, family and friends. It is like that until today – when I fall, they pick me up. This is my greatest strength.
Where did the idea of writing letters to Daughter come from?
I wanted my daughter to always feel my presence, and I didn’t know how my fight against the disease would turn out. Then I wrote letters for every important moment of her life: for her communion, for her eighteenth birthday, for her wedding day. There are over a dozen of them. The communion one turned out to be unnecessary, but I did not destroy it. I hope to participate in the next celebrations, let the letters wait.
Patients often emphasize that finding the right center and competent doctor is extremely important, that it gives the patient a sense of security.
I believe this is crucial. I came to the HED to a random hospital that did not specialize in the treatment of ovarian cancer and appropriate cytoreduction. I was operated on there. Today I know that if I had at that time, at least some of the knowledge I have now, I would apply to a more specialized center. I didn’t know what ovarian cancer was and where to look for help. I faced the subject in the dark. Sometimes I wonder what the path of my treatment would be and where would I be today if I went to another, more specialized ovarian cancer center.
That is why the decision to establish the Association?
Just like that. So that other girls do not have to look for effective therapy, but go to the appropriate specialists at the very beginning of the disease. Today I know that the first cytoreduction operation and the first successful treatment determine the entire recovery process. I would like each patient to have optimal access to the best possible treatment. This will allow you to live longer and maybe even win the fight against the disease.
So the Blue Butterfly Association was created, because women are just like butterflies: beautiful, seemingly delicate, but in fact strong and brave.
We hear more and more that ovarian cancer is becoming a chronic disease. How important is it for patients to extend the time until the next relapse?
Each case is different. Sometimes the remission periods are long, sometimes short. In fact, in this disease every week, month, and six months counts. This is our measure of life. Every time of rest from the debilitating therapy is important and therefore modern technologies and innovative drugs give us great hope. Unfortunately, not all patients have access to them. The key to deciding to treat with PARP inhibitors is having or not having mutations in the BRCA1 / BRCA2 genes. Treatment is reimbursed only if the patient has this mutation and if it is platinum-sensitive (this group responds better to treatment with inhibitors).
Patients who do not have the mutation, i.e. platinum-resistant, have difficult access to PARP inhibitors. As an Association, we fight for every patient and her access to the entire spectrum of treatment options.
What does therapy with PARP inhibitors give?
It is a longer time free from illness, time to regenerate and live a normal life. We know that patients with the gene mutation and those platinum-sensitive respond better to it, but the effects for other patients are also proven. That is why we are fighting and we will fight for access to PARP inhibitors for all women, at all stages of the disease.
Another challenge for the Blue Butterfly Association is its creation Ovarian Cancer Units.
These are experienced centers offering comprehensive treatment and care of top-class specialists. There are already a few such places in Poland, but it is definitely not enough. And too little is said about them, so the patients do not know about them. We cooperate with the National Consultant in the field of Oncological Gynecology and the Polish Society of Oncological Gynecology, we also join forces with other organizations. The Minister of Health recently assured that he listens to the voice of patients – we hope that ours will also hear!
Nine years have passed since the diagnosis …
Exactly. Sometimes I think that I “survived” the statistics, I won my life. I even heard it once from one of the doctors: “statistically you should be dead”. This turned out to be the motivation to fight, despite the numbers.
I have someone to live for, I need to raise my daughter, hug my husband, take care of our loved ones and catch every moment with them, go on vacation, make plans, make dreams come true and help girls. There are over 800 of them under the care of the Association. There is someone to look after. Maybe that was what my illness was for?
As long as I have strength, I will not let go, and I believe that soon a drug will be found that will contain and control ovarian cancer, and maybe even cure it. For now, I put on a colorful dress and high heels and try, despite unfavorable circumstances, to go through life with a smile. Despite everything. Despite this “grandfather” that I have in me all the time, and who does not want to let go.
Authorized press interview prepared by the Association Journalists for Health as part of a series of expert debates Live with ovarian cancer. Like a butterfly. True stories, under the patronage of the Polish Society of Oncological Gynecology and the Blue Butterfly Association.
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