Monthly Archives: September 2014

One very special photo

mom-and-dad

I don’t think I’ll be taking any new photos any time soon. I don’t feel up to it, I’m very sad and disappointed in my abilities and life in general I suppose. Maybe it’s just that I need this period in which my head does nothing but ruminates with all sorts of memories connected with the person that has been by my side for as long as I remember and is now gone, or maybe I’ve just had enough of useless battles that I can’t possibly win. Sometimes it took me all the energy in the day to produce several photos that I considered good, which in turn ended up being more than average in comparison to what I could see in numerous blogs here and places elsewhere which discourages me in no time. Sometimes in turn I think that the only things I know how to do somewhat well or I actually want to do is write about something, take photos, draw, grow flowers… but I’m not great at any of these things nor they can secure me some living. Yet without them I don’t know who I am at all, now more than ever I feel extremely lost in this life.

On the day my father died, I ran out of paper to copy some documentation Mr. very efficient undertaker required for the funeral. I was totally lost and confused as where to look for paper in such a situation, and my mom opened the right drawer and said “Here you are”. No, not that paper, those are some old photos wrapped up in an old office paper cover, I replied. Oh I am sorry, she said and brought me the right pack I needed. When the undertaker left, I wanted to put the photos back into the drawer but instead I sat on my bed and took them out to see what was inside that cover. Those were the photos I took while still attending an unsuccessful life episode at an art college where I had among other things one semester of black and white photography. I used my dad’s old camera and another one of that old generation that we bought together at a photo fair, I loaded them with films for black and white photos and later personally developed those films and produced photos in a dark chamber at the college. For the end of year’s exhibition I had two collection of photos – Belgrade – buildings vs. nature and Belgrade cemeteries’ tombstones. They had some success, but in the end it all ended up covered with dust together with everything else in my life. I knew more or less what I was to find in that cover and it disturbed me, yet I put my hand inside and pulled out the first photo. Strangely enough, it was a photo of Jesus from one of the tombstones. It made me shiver and cry all right. The second photo after Jesus was this one – mom and dad sitting together in one of Belgrade’s beautiful memorial parks, dad smiling and passing a bottle of water to mom. There is some very positive special atmosphere trapped in that photo taken 9-10 years ago, yet it seems that decades have passed since those very special times in which we were a much happier family. This photo is special also because it was taken after my quite impressive recovery from the second violent PD outburst, while my dad still had both nerves and strength to drive me out everywhere to conquer agoraphobia. At first it was quite hard to go to these lessons, but he would drive me and even wait for me, I think that he was glad that I grew more and more interested in photography. It was one hell of a job for me to prepare those films for developing, because that is something that must be done in a room without even a single shadow of light. You have to open the camera in total, absolute darkness, take the film out relying only on your touch to guide you and insert it into a developing vessel so that you don’t miss its guides that separate layers and layers of film from one another without seeing a thing. When the film is properly inserted into the vessel and properly guided in concentric circles, the vessel has to be tightly fastened with a lid and only then you can come out into the light again. Should I mention that this procedure is among the worst anxiety sufferers’ nightmares? You’re trapped until the end of the procedure in total darkness. You don’t see a thing, no matter how hard you try to open your eyes. Trapped plus temporarily blind plus scared of destroying a precious film, equals panicccc… usually, in other situations you can run away and retreat even if it means to embarrass yourself. Running away from such a situation would mean opening the door and exposing the film to the light, which in turn means… bang! and all your work vanishes into thin air. I remember tons of panic and I remember how it subsided, slowly but definitely with each new film I took out of those cameras. The joy of seeing good shots that I captured would eventually overcome the pains that were needed to get me to that place.

So, all in all… this photo is in memory of my dad, but it’s not only that I took that shot, I carried out the full process to it’s end – developed the film, bought the paper, worked in the dark chamber to expose the paper to the necessary light to get this picture, put it into developing and fixing solutions and left it in the dryer till it was ready for others to be seen. Now it was scanned and turned into pixels, I’m just sorry that I don’t have a better scanner. I shouldn’t complain, because how things are right now it is highly improbable that I’ll see another one in a very long time.

I hope dad is happy somewhere there where he is now, smiling like this. And I hope he’s less lonely than mom and me. His favorite gardening magazine arrived today, it was very late this month. Too late as it turned out. We were at the cemetery today and we carried it with us. Unfortunately, there is nobody to read it any more. It was the 4th time that I went to that grave in 10 days, but it still doesn’t seem real. I still think with some corner of my mind that he’ll appear from somewhere and wake me up from this nightmare, even though he died on my very hands. Then another morning comes and my stomach that turns into a painful knot reminds me that there is no waking up from this reality. It’s too damn hard… dear God, help me find some way out please.

slika Isusa - spomenik na groblju

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Farewell dear daddy (1936-2014)

tata

We fought that horrible battle all right, me, my dad and my mom, all alone. It is only today that I mustered some strength to come here and say something, make myself heard. I’ve never experienced something that much dreadful in my life and no matter what anybody can tell you about cancer and how brutal it is, it is only when you see it firsthand taking away one of the closest persons you have in front of your very powerless eyes – which I don’t wish on the worst person in this world – that you can truly understand why it is considered so hellish. It was cancer all right. And of all the damn cancers in this world, the worst and the deadliest one. Pancreatic cancer. We have two ultrasound results, several X ray images, gastroscopy results and the CT scan, but there are no biopsies to be dead certain, although it fits the description perfectly. There was no time. Time was leaking through those tiny space between our fingers too fast for anything to be done. The metastatic lesions were first discovered on August 23rd which was an incredible shock for me. Today, after downpours and downpours of tears I am in much greater shock knowing that my father lived only 20 days after his diagnose. He passed away on September 12th in such a terrible way, suffering from pains and in some inexplicable agony, on my very hands. I did manage to beg the ambulance to arrive and he took his last breaths in their presence, attached to the ECG, which showed flatter and flatter line, till everything got hushed up and ended in surreal silence. That silence still haunts me whenever I move around the house, it is as if I need something massive like an entire mountain to fill the emptiness that is left behind him.

There is no peace, there is no comfort, there is no resolution. We didn’t get a proper chance to try to offer him any sort of cure, even though there is almost no cure for pancreatic cancer, even when discovered early on, let alone at this stage. It’s the most ominous cancer of all not only because of its astonishing aggressiveness, but because in the majority of cases it doesn’t give you hardly any proper warning till it metastasized. Till it’s too late, for everything and everybody. We didn’t get a proper chance to say a real goodbye to one another because all of us, dad included, didn’t believe first at the diagnose, then at the possibility that it could take him away at such horrendous speed. It is just as bad as it can get when cancer is involved, but even pancreatic cancer usually gives you several weeks or several months if not a year or two… to finish some unresolved issues, to express wishes, to give instructions to those that will stay behind you. We weren’t that lucky. There is a very slim chance to get hit by a lightning or win a huge lottery prize, but such things still strike. We hit the jackpot when it comes to bad luck in life… or it was simply as one doctor said that my dad was such a strong and tough man that he carried out the cancer story oblivious of it till its end on his two feet, which is very unusual and quite remarkable. Considering all his other lab results and the fact that he never really lay in bed for more than a couple of days with a flu in spite of the diabetes he very successfully fought with for 22 years, he could have lived for another 15 years at least as they say. Maybe, maybe not. Many times doctors actually don’t have a clue. What remains incredible is that my dad on August 9th worked strenuously in his garden, drove the car and carried home kilos and kilos of tomatoes, feeling just slightly more tired than usual. A month later, we had to organize his funeral.

Preparing the funeral was honestly a story by itself… Funerals are digitally organized in such an incredible manner in a rotten country where my dad was admitted to a hospital which is in completely brutal state – old beds with mattresses falling apart, no pillows for everybody, no blankets, no clean bed sheets for as long as you stay in hospital, cockroaches dancing around rooms, and on the top of this mountain of misery, a horror story contrast – blond, young female doctor, perfect style and makeup, pretentious, lacking any sort of empathy or human emotions, but obviously pretty rich. That woman could easily buy full equipment for those miserable 5 beds in that sad men’s endocrinology room and not even feel any budget difference, yet she was much more interested in kicking my father out of the hospital when it was confirmed that he was a palliative, i.e. lost case. This person who filled my father to the fullest with insulin to clear his ketoacidosis in order to discharge him as fast as possible probably never heard that insulin is among other things a growth hormone, and that such a speedy flush out of keton bodies is not recommendable at all with cancer patients because it simply speeds the tumor growth, yet she still had a nerve to verbally confront me. I just wanted my dad to have a proper care, I was quite aware that hospital sucks in many ways, but still it is a place where he could get full time IV fluids, injections of pain medication and TPN as towards the end he ate and drank less and less. She shouted at me in front of him that “he can’t live in hospital, you know!”, to which I replied moving to a safe distance from him – and you, with all your “medical knowledge” are trying to say that he will live? Here, at home, or at any other place? Live? The following day when she discharged him, I told her that talking that way and with such a tone of voice in front of a dying patient is not ok at all, and that she shouldn’t work with people. I’m not ashamed of what I said, because it’s a pure fact. My father was dying. I could have flipped, shouted, cried, fainted in front of her, yet I was always very quiet and polite, holding all the horror and grief inside. Even if I were impolite, she as a medical worker should have understood it, but it was clear enough that she had no compassion at all. For Christ’s sake, my dad, my one and only dad was dying. Then something very painful happened – her expensive mobile phone rang and she answered it even though it was a private call with these words – oh hello daddy, did you finish the paperwork? It was as if she stabbed me right into my pancreas. I was counting last days with my dad, while she treated me like hell and spoke to her dad with whom she had indefinite time at her disposal. God forgive me, but I wished her all the worst in my mind many times. I still can’t understand how such a person can be a doctor. She told me that I should be grateful instead. Grateful? Of what? Of megadoses of insulin that contributed to speeding his death? Of prescribing a patient who barely ate 22 i.u. of morning insulin on the day 5 in hospital due to which he entered hypoglycemic coma and his blood glucose was immeasurable, they barely managed to bring him back to life? Of injecting him 18 i.u. of insulin on the day he left hospital so that on that very evening we noticed huge sweating and measured glucose at 2.4, due to which we loaded him with all sugar he could eat (he hasn’t eaten that much sugar in last 22 years)? Of not instructing me how to use insulin pen and telling a nurse to do it, who failed to inform me that a loaded pen isn’t supposed to be kept in a fridge and that his insulin type was a mixture, which means you have to strongly shake it before injecting it so that it can resuspend? Of letting me stand while she spoke about his death, sitting in her chair with her back turned to me, staring at her computer? Of not giving me any blood values so that I could compare values from before entering the hospital and his progress? All in all, I should be grateful to her for doing her job, being such a lousy doctor at the same time? Ironically, my dad was a doctor, too. If she had no compassion for a human being, she could at least have had understanding for a colleague who used to wear that same white coat up to 13 years ago when he retired. No way, that was too much to ask I suppose. She said she never saw something like that – “something like that” was a person, my dad. I believe her. She is most probably younger than me, so her experience is really “huge”. Plus there is one massive point she missed in this whole story – she most certainly isn’t and probably never will be an oncologist, if she were one she would see much worse tumor marker values every day all right. In the end she told me that I had a bad attitude and to get lost… I don’t have words for your attitude, I replied and then I obeyed the “getting lost” part… while I was shutting the door, she cynically shouted “goodbye and have a pleasant day”! I opened the door again and said PLEASANT? I mean, my life is falling apart, my mind is falling apart, my family is falling apart and I’m taking a dying patient home where I don’t have a private nurse, IVs and everything else he can’t take by mouth, and she says have a pleasant day? May things get this pleasant in your life, I said, and slammed her door.

Slamming her door meant opening door to hell itself in our modest home – there was no way to afford private care, dad was trying to convince us that he was managing, he fought to eat, drink, take meds, but every day he went rapidly downhill, one day was like an entire month for some other pancreatic cancer patient. I constantly measured his sugar levels and gave him only half the amount of prescribed insulin when needed… we changed diapers, we moved him up and down as he was constantly in pain and choking, in spite of the largest doses of opioids he could take. His stomach was filled with fluid this darling doctor and all other doctors in town refused to drain to give him a little bit of relief. On the last evening I sealed a morphine patch on him, but he didn’t live long enough for it to start working.

Then I had to survive the ambulance pronouncing death, but with their death certificate he couldn’t be buried. We had to call a medical examiner to come, inspect the body and allow the funeral. Medical examiner’s office immediately informed private undertakers who called from a hidden number so that we couldn’t know who made the connection, because that’s illegal. It’s our right to chose the funeral organization and they tried to impose the people who give them percentage. Horrific. We shook them off successfully, but had to be in the room where the medical examiner examined the “body” in our presence. For me, it was daddy. Daddy sleeping. I still couldn’t grasp what happened. Then we had a visit from a legal undertaker… I’ve never seen such an efficiency. I was still in shock an disbelief when this man put an iPad in front of me and told me to choose a coffin, equipment, cross, etc. “Just flip the pages and when you find something you like, press the upper left corner to see the price…” Something I like??? What was he talking about… When my grandmother was buried 17 years ago, there were printed catalogs and my parents took care of everything. I’ve never buried anybody in my life. Now, all of a sudden, it all felt on my shoulders, hardly 2 hours after his death. Everything was digitally arranged, one click her, one click there, receipts, pay this, pay that, every step of that funeral had some price. Abominable, as it was happening in a country where patients lie in cockroach infested hospitals and where a retired medical doctor with perfectly good medical insurance couldn’t “live” in hospital, being a dying case. Then my mother ran to the bank and I was all alone and shaking when the coffin arrived. Three strong scary men and a tiny one, who was supposed to dress my dad. And I was alone. I have PD, you remember? My hands were shaking out of control, yet I helped with everything. Mom returned on time, but she couldn’t bear to go out as they were carrying the coffin out of the building. I went with them, alone again. I watched them put the coffin into their vehicle and I had to make sure they fastened the proper lid onto it. And to wave a final goodbye forever, completely alone.

That night I got sick with flu. Exactly 7 days earlier I went to my dad’s GP to get a whole bag of meds with which I was supposed to carry out that battle with cancer at home, and there was a girl who said she had a fever and sore throat. Great, I thought, but then I forgot completely about it. It turned out that the virus didn’t forget me. By the end of the next evening I was sad like hell, had a fever of 101 and horrible pains in each and every muscle of my body. I cried because of what happened and how it happened, I cried of despair, anger, fear, of physical pain… but one thing kept me still in one peace. “If dad could endure what he endured, I have to survive this as well and put myself onto my feet in two days to be at that funeral”. He dealt bravely with cancer pain, so there is no way I could fall apart. No way. Funeral… even the very idea of it was terrible, because of the event itself, but also because as he didn’t express any precise wish, I wanted him to lie together with my granny. That graveyard is TOTALLY out of my comfort zone. Out of town. I’ve never been there in these last 7 years. It was out of question. And now I had to go there and not go crazy in front of those who were to attend the funeral. Quite a mission… I fell apart a bit when we reached the grave and when I saw the grandma’s tombstone and her picture, everybody thought it was just because of dad, only me and my mom knew what it meant underneath. I brought this picture of my dad with me to leave it on his grave, this is how I want to remember him. I took this picture with my camera, with my own hands and I brought it as my last personal gift for him. He was a man who loved life and his garden more than anything, always smiling, always pushing ahead, always walking around, always fixing something, things, people, animals… but he couldn’t fix cancer. I don’t want to remember that defenseless, weak, thin man he turned into and the scenes of dying, because by that time, my dad, the person who he really was had already left me.

I don’t know if he can hear me now, but there are so many things I’d still have to tell him and I didn’t have time for it. I wish he could return for one night only so that I could tell him how much I loved him and how much I miss him. How sad I am that he left this world knowing that nothing is safe or secured in my life, unable to be proud of me in any way. I would need him to speak just one more time, to tell me that he wasn’t totally disappointed with me. PD destroyed everything, I fought the best I could, but I needed some more time. I’m sorry daddy, but I was unfortunately born the way I am. I can only promise that I’ll try to continue to fight somehow to make things better, but I can’t promise that I’ll succeed. I wish there were less emptiness around me. I wish you were still here… Damn it, I miss you so much, why did you have to go, and in such a dreadful way.. 😦

Rest in peace dear daddy… and wait for me up there somewhere. Your sufferings ended, and mine will some day as well. I watched the movie about Frida Kahlo the other night again, she was a famous Mexican painter who had many health problems and eventually died in horrible pains. The movie ends with her words – “I hope the exit is joyful, and I hope never to return.” My daddy repeated in his last two or three days how horrible life is and begged to die as soon as possible. It was terribly hard to listen to this, but I understand him. Psychologically, I’ve been carrying around so much pain for many years and I’ve felt so well the cruelties of life on my very skin. Somebody said – You don’t have to get killed to lose your life. I’m still here, but I lost my life many years ago. Now I lost my dad as well. I have no idea how I will deal with what future still has to bring for me, but I just hope that my little family will be together again some day, in some better place. No pain, no fear, no grief, no separation. Daddy, don’t abandon me completely, I beg you. Wait for me.