- Mnoga gruczolakowatość wewnątrzwydzielnicza (MEN)
- Wywiady
Piotr - wywiady
Jak to wszystko się zaczęło?
Started to feel pain in my lower part of stomach. While running tests turned out that have 7 cm lypoma near to my bowel and also 4,5 cm neuroendocrine pancreatic tumour. Further diagnosis showed that also have tumours on my pituitary gland, adrenal gland and hyperparathyroidism.
Czy masz już diagnozę? Jak długo zajęło Ci uzyskanie diagnozy?
I do have diagnosis, but still waiting till the result of genetic MEN1 test. It took over eight months to assume I might have MEN1 and in a year will have official confirmation.
Na jakim rodzaju specjalizacji medycznej byłeś leczony? Co było dla Ciebie najbardziej przydatne?
Oncology, gastrology, endocrinology, hematology, neurology. All of these specialities are useful, but most of them are oncology and endocrinology.
Co do tej pory było dla ciebie najbardziej przydatne?
Support and knowledge gained from both patients and doctors
Jakie były twoje największe trudności?
Learning how to live with incurable disease. Thought that my family can also be affected and may have to go through same surgeries, medicals and tests.
Jak zareagowało twoje otoczenie społeczne i rodzina? Czy zmieniły się twoje relacje społeczne lub rodzinne?
All changed. Lots of people, that once treated as friends, turned their back on me. My social life has been verified deeply. People are afraid of such diseases and prefer not to talk to you instead of simply ask how you feel. Some of them would rather forget about your existance, because you may be a "burden" for them. Good thing is, you learn who to trust and who will always be for you.
Jakie rzeczy przestałeś/aś robić?
Stopped drinking alcohol, which I didn't drink a lot anyway. Stopped using spicy and salty ingridients, eating sweets and fried food.
Also stopped thinking I brought this to myself and caring about people who don't care about me. Stopped worrying about irrelevant and insignificant details that used to make me feel blue. Life is just too short for that.
Co sądzisz o przyszłości?
Oh, it will be beautiful. I'm learning how to appreciate every single moment in my life, trying to make the best of it. I'm getting better, my attitude is changing and I really think that the world around is a marvellous place and there is lots of amazing people out there yet to meet.
Które lata do tej pory były najlepszymi latami w Twoim życiu? Co zrobiłeś/zrobiłaś podczas nich?
I live with this disease my whole life, but for me it all started around a year ago. It was the worst and the best year in my life. Finally realized what a precious gift life is, what I really want to do in my life and opened my eyes and heart for all new things to come. Want to help others live with incurable diseases and support them while going through hard times. I gave up on things that made me feel as a bad person, started to love myself just as I am and being more optimistic than ever. For the first time in my life I feel like I'm on my way to good, good life.
Jakie rzeczy chciałbyś/chciałabyś gdybyś nie posiadał/a tego stanu zdrowia?
I would be more idle, for sure. Disease made my life means something.
Jeśli miałbyś/miałabyś opisać swoje życie w jednym zdaniu jak one by brzmiało?
Never doubt in yourself. No matter how hard sometimes it gets, you're strong enough to make it through. Just believe.
Na koniec, jaką radę dałbyś osobie w podobnej sytuacji?
Breathe. You are going to be just fine. Give yourself space and time to accept things as they are. And accept yourself as you are. Do everything that brings joy to you and other and always try to be a better person. No matter what. You're still alive and sometimes it's the best feeling ever.
