For the first time about Cherkasy patient Lyudmila Melnyk TV-channels told in March. Women was reduce to extremity and that’s why she decided to tell about cancer patients life whom live without anesthesia. Doctors reviewed Lyudmila’s prescription.
Now it is maximum allowable but still insufficient. We believe that yesterday wave of reports and messages could make Ukrainian patients life easier.
«It hurts every day. And my mother suffers when she see how I am suffering». These words belong to guy from Cherkassy Vlad Zhukovsky and they could be repeated by thousands of Ukrainians ill patient with cancer pathology, tuberculosis, AIDS and other diseases.
But it was some difference between Vlad and another patients. He and his mother Nadia Zhukovska found not only the strength to fight with disease and pain they talk out loud about assist the terminally ill existing system which give so much suffering for patients and their relatives.
«Hospice became the redemption for me», - said Olena at the first meeting in Sevastopol hospice. Vitaly Vilivchuk the head of department said: «I have an emergency patient you must meet with her».
Olena showed us beads articles (the creation of which she interested here), first folded puzzle and told that she collected seeds that would like to plant near home (providing she waits for spring). She died on the end of November.
On the second Saturday of October world celebrate the day of hospice and palliative care. It is a new topic for Ukraine but at least once a year it accepted to remember and talk about the problems of palliative patients. In deed and not in name generally about these talk non-governmental and occasionally the relatives of patients. Often the talks are about recently dead. Palliative patients are usually silent. But there are reasons.
But lately I understand that I can’t keep silent. That’s why let me introduce myself. My name is Irina, I’m 28 years old and I’m palliative patient. Those people who hear about word "palliative" often think that we are talking about person who must die very soon. But this is not quite true.
Palliative patients called also those patients who have an incurable, advanced disease that lead to reduced life expectancy. So I have few diseases that can not be cured and which even hardly to hold in.
That’s why my expectancy lifetime is more less than the average. In such a way I say when don’t want to hurt the sensitive companion. Exact: my illness is incurable and I do not live to 65 and maybe to 50 too. No fact that in 40 I will be alive. But I do not wake up every day with a thought of impending death (although the I wake up because of drink medicines reminder without which I can not live under 29 years). And no I do not live like "trying to catch ...". I know that I have no time for many things. Even if I were guaranteed 75 years for living – I haven’t time for everything. I do not ... and another thousand patterns. I just live.
I’m living for the day like you’re living. I know that tomorrow could never come for me but for you could be the same... Who knows what brick can fall down on your head? Even you, even me. Life – is an unpredictable thing. Even if someone tried to predict it duration :). I knew that my life would be not long at 14 years. And I never think by future terms. I do not have thoughts like "when I will be 20 ..." because I knew that 20 may not be fulfilled.
That's why I'm so hard to understand my approaching 28 and 30 - I've never thought about these figures. But it does not stop me for dreaming and making plans which sometimes come true, sometimes - not. Everything is as it should be as for those who think that "tomorrow" is guaranteed. It seems that I packed a lot for my years. Three years ago before the terrible surgical aggression I «just in case» made a slide show with DDT song «that's the lot that remains after me».
In fact that except two titanium joints and pacemaker after me will stay a lot of origins things. Forum http://miasthenia.borda.ru/ and Association miastenikov fund "Happy Child" http://deti.zp.ua/. Will stay the surviving children and relatives of those who did not survive, but for whom everything possible was done. Over the last 3 years the list has added. But generally speaking it does not matter because I don’t aspire to " leave mark on the land".
I just live. I live the way that I prefer and make things that bring me pleasure. Here and now. Of course I'd like that my undertakings live after me but just because they are look like useful for the people. And I wish that this utility does not end with my death. I do not like to talk about my problems. I feel not good when someone began compassionate and spare me.
Sometimes I hide my condition for example from doctors. Because if you can not be cured, your treatment is not very interesting. So if I want to be treated (for example fracture) I have not voiced all my diagnoses.
When I moved to Kyiv I was asked: "Are you afraid that you will be denied in medical care because of your Zaporozhye registration?". No I'm not afraid because I do not look forward to the hospitals where looking at your registration. I can look to a few friends whom are doctors because when Ill call them they can come to me immediately. I’ll not go to the hospital caus e Im palliative patient and people like me can’t receive medical help.
Do I afraid death? I'm afraid to stop living. Not only stop to exist physically but stop living that live that brings me pleasure. I'm afraid to become very weak and dependent on others.
I am afraid that at some moment I lose resources energy, money, relationships, environment, etc.) that need for continue active life.
And also I'm afraid hospitals and intensive cure unit. More than anything, I'm afraid to die in the intensive care unit. I know how it is and I do not want such death, to be more exact such life even before death.
I’m dreaming of simple things and some things that remain me a dream. I’m dreaming of longer, active and interesting life. I want to have the right say "no" gratuitous life support. I want sledding down the hills in winter.
I want to know that medicines without I cannot live do not disappear from the pharmacy to the next re-registration. I won’t suffer from pain when I need anesthesia. I want to be judged by my abilities and deals but not by my diagnoses and life expectancy. I’m dreaming of new trips cas I live to discover new places! Now I’m dreaming of a sunny weather that permits take a camera and shoot the autumn.
I am writing this text because I have dozens reasons not publicly talk about my palliative status. And I have the only one reason to share all of this - I want to make lives such people as I important and estimable as the life any healthy person.