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May 13, 2019

Hospices of Hope team in Moldova is small but try to do the most for our patients. Recently, Hospice of Hope Moldova & Albania organized a trip to the four areas of Moldova where we support local teams who deliver services to the terminally and seriously ill.

One of the guests taking the trip was Mrs Lavinia Ionita, the wife of Romania’s ambassador in Moldova, who felt compelled to write notes of all her time spent visiting patients and teams. Her observations make for an authentic, raw insight into a world most of us can’t even imagine.

Please take the time to read her story:

“Everywhere in Moldova, but particularly in the north, there is a fear to say the word ”cancer”- it’s as if saying the word would cause you to fall victim to it. This idea comes from the belief that once you have cancer you are going to die and that there is no way to prevent your death. The lack of information about the different stages of these sorts of illnesses, and how to cope with them or take the next steps going forward has caused a poor approach to dealing with patients diagnosed with them. That’s perhaps why, the word “patients” is not used, instead calling them “beneficiaries”.

“Any visit to an ill person always has the potential to surprise you because the effects of an incurable disease can be so different. Without knowing anything about the history of a disease or its current stage, one can be deeply overwhelmed when visiting a patient for the very first time.  Each patient has their own way of coping with their conditions, although how they deal with them depends on their character, social background and their level of education. Some patients are often concerned with the impression they leave on visitors, others are simply captivated by their own world or even lost within it. 

First day: Ocnița

We were greeted in Ocnița by Natalia, the doctor, together with some nurses, ladies suffering from cancer, and some wives of the patients. Although in the beginning they all seemed composed and warm, when they started to talk about themselves they burst into tears. I did not understand everything they murmured as many spoke in Russian, but the language of pain and anguish does not need explicit words to be understood.

Our first visit was to a lady who was suffering from ovarian cancer and she lived alone in her house. It was the afternoon of a winter day but the dazzling rays of the sun anticipated the imminent arrival of spring. The entire house and the yard were highlighted as if they were under reflector beams. The house was flooded with light and you could easily notice the order and cleanliness. At first I thought that she must have been living with someone else who helped her with the housework, but she told us she lived alone. Her son was working abroad and managed to visit from time to time – he also sent her money. I become aware that it was not appropriate to go inside, there was something that told me we should not put her in an unconformable position and that she might worry whether her house was clean enough. We spoke about some common things, and the conversation seemed natural and open, as if we were not facing an ill person. Suddenly, she burst into tears and cried softly as she spoke not about the illness and suffering, but mostly about loneliness. We could see a dog and a cat in the yard though.  We saw pets in many of the households we visited and they seemed like proper members of the families; they had a curative, therapeutic effect, like a magical power to support the patients.

Natalia wanted to speak alone with the patient in the end because the patient, like many others, was embarrassed to talk about her physical condition and about the necessity to wear diapers. She wanted to hide her stoma bag and not tell us anything about her condition.

Even her last words were apologies about the fence which needed mending or painting but she did not have the money, or perhaps she plainly lacked the will-power to get someone to replace it.

When in the presence of an ill or suffering person you wonder which encouraging words seem the most appropriate; but often, when glancing in their eyes, you realize that the magic words “you will be fine soon” and “everything will be all right” cannot be used, and you find yourself in a position where you cannot provide them with comfort so easily. You just look at them and do not even dare to wonder what you would do if you were in their shoes – how you would react and how you would like people to support you. But, of course, this won’t happen to us, we always brace ourselves. I wanted to tell her that she was getting better, because that was supposed to be the story of illness: it was a hurdle you jumped over, or a battle you won. Illness should be a story told in the past tense.

It was one of my very first visits to a terminally ill patient and no words of comfort could come to me. It seemed that on that day before spring it was only the sun that could give optimism.

The second person in Ocnița was an elderly woman suffering from genital cancer. We entered the small yard where two dogs came barking and a man greeted us. A white greyish cat appeared and passed me by. I touched her gently and she responded as only spoiled cats can do. I was a bit intrigued and the first thought that occurred to me was that she was used to tenderness and love. When we entered the small bedroom, most probably the only one in the house, we could see three cats moving leisurely from the bed to the door or to the table and window. One of the dogs came too but he was not allowed to climb the bed. Perhaps that was because we were there. How effortlessly can very poor people take care of animals! They had 9 cats and 7 dogs and it wouldn’t have surprised me if other stray cats came and were adopted.

However, what surprised me the most was the lady’s attitude: she was so open and enjoyed chatting greatly. The patient and Natalia started talking so naturally as if they were two friends who had not seen each other for a long time.

Although she was a woman who probably did not have much education, she suddenly started pondering philosophically: “All things, flowers and animals, are born, grow, reproduce themselves and then die and disappear and we humans must get used to this condition and must learn to accept all those seasons of life.” She was now in her last season on this earth, and the season of love had passed her by, she added. She hinted to the following Sunday, the Dragobete, the traditional celebration of love and the equivalent of Valentine’s day.  Parliamentary elections were going to be held in the Republic of Moldova on that Sunday, the 24th of February. Life went on!

The doctor tried to avoid talking about death. “We should be focused on the present moment, everything is good for now, we can enjoy this moment”. The patient had been hospitalized recently, but she recovered and was better than some months before. The palliative care mobile team achieved its purpose, the teams care both prolonged life but also re-established the quality of life.

As in the first case, the discussion relating to treatment, medicine and diapers took place separately after we had left and were standing outside waving goodbye to two of the dogs which climbed on a small building. It was an idyllic picture the little country yard, the animals in the background, the all-encompassing sun, like all the worries in the world had vanished.  But, alas, no, we were just getting away from them, returning to the car.

The Second Day: Orhei

                  It felt as if each of the trips took place in a different season, even though only one day apart. If one day the winter sun shone of rebirth, another day the fog surrounded us. But even then, brightness emerged in that gloomy atmosphere and we drove towards the light; we can’t forget that even in the darkest hours hope can be brought into the lives of many ill people.

                  The visit to the first patient in Orhei, who had had breast cancer since 2003, was heart-breaking and also a great deal different. She had been operated several times, and now there were metastases in various places in the bone system. The lady appeared to be the most informed, educated, and with seemingly the highest material status of all the patients we visited. However, there was a clear contradiction between the objective way she was talking about her illness, showing her tomography with the metastatic sites, the treatment options, the different medication she had sometimes taken from abroad, and the belief that all the metastases would heal and she would even be healthy again. Clearly she was a fighter, and certainly the desire to overcome the disease preserved her confidence and gave her a sense of purpose, yet beyond all this there was a latent depression, a mixture of fear and helplessness that certainly wore her out. She was talking about her desire to be with her granddaughter, to be present at the wedding. It felt like she was listing deadlines and as if her hope was struggling against them.

                  Also in Orhei we visited a deaf-mute patient suffering from colon and bladder cancer where the doctor focused on the pain management scheme. The patient’s wife administered morphine twice a day and the patient also took oral analgesics in between to try to keep the pain under a certain level. The patient’s wife was thoroughly devoted; her desire to keep everything under control, to know exactly when and how to administer the drugs was so encouraging.  In many cases people want to talk about other things and ignore the subject but here the discussion was clearly focused on the clinical aspects of the disease. The patient was scheduled the same day to pay a visit to the oncologist who was going to be told about the need to increase his medication.

The Third Day: Soroca

                  If at Orhei we met maybe the wealthiest of the patients, in Soroca we met the poorest. The first visit was to a patient suffering from stomach cancer, with lung metastases, living in a single room with his wife, his daughter and her husband, their little boy, two cats, a dog and a parrot. The little room and the kitchen were packed with objects, large and small, some useful, others just decorative. As in many other places, a pungent smell, the mixture of disease, medication and cooked food was overpowering.

                  A picture of the man’s wedding could be seen in the furniture window. You could still recognize a glimpse in his eyes, and it was here where the resemblance between him and his former self stopped. Now he was a 55-year-old man, literally a shadow of what he had once been. The leg bones were thinner that I had seen before – “skin and bone” was the accurate definition of what you saw, in fact the skin seemed to be there just to cover that unnaturally thin and long bones. He was so weak, breathing hard and the first injected drug, Dexalgin, relaxed his muscles and allowed him to breathe more easily. His wife, a young woman, who spoke Russian mixed with Romanian, had got used to giving him his injections and she complained about her mother-in-law who was living in a three-room flat with no wish to host any of her son’s family.

                   Many patients did not have the energy to speak more than a few words or sentences about their illnesses and so where the patient had a family member to help them, it would fall to the family members to speak on their behalf.

                  Also in Soroca we visited an older lady with breast cancer, who had been operated on. She had pain in her arms, moved with difficulty and complained of insomnia. The doctor we went with, now retired, had been an ER doctor and he could not learn anything new from the patient. However, the nurse, Bogdan, was young and capable and gave the lady some sleep, pain and stomach medication. The lady talked about everything: her family, her grandchildren. The nurse wrote on each of the drugs when and how they needed to be taken, though something seemed to say that it would be difficult for her to do that, the lady just wanted to postpone thinking about medicine again. She spoke an older Moldavian language full of archaic and eccentric words that I had learned from my grandmother. I do not know why the lady reminded me of my grandmother, perhaps the way she was lamenting about loneliness. It was as if any remedy against loneliness would have been against the disease itself; physical suffering didn’t break her the way loneliness did. The way all these old people spoke highlighted that they needed someone to talk to, and it was clear that the visits of the mobile team meant a lot to them, helping the patients get away from their troubled thoughts. There were numerous icons arranged on the wall and on the table in one corner of the small kitchen, and she began to tell me how much she had liked to go to the church and to visit monasteries but that she now had a grudge against God who had deserted her.

Through the open door we could see a sleeping man covered with a blanket; his face could hardly be seen. He was the son of the old lady, who came from time to time and helped her with the household chores and bought her medicine. She began to wash some clothes but declined our offer of help.

When we left, she came to see us to the gate, moving with great difficulty, and the doctor promised that he would send her a walker to use when the weather got better. She also asked us if we had family and saying “Take care of your health, this is the most important thing, and take care of your partner, for loneliness also kills.”

The last patient we visited in Soroca was a younger lady who was suffering from genital cancer and had a left-side paralysis. Her son was working in the UK, and she was in the care of her daughter-in law. She lived in a village which seemed forgotten by the world, with unpaved streets, full of dried mud. There was a television in the room and it seemed the only thing that could capture her attention. She was sitting on the bed, utterly lost in her world. She gave us a slightly scared look at the beginning, and then began to cry softly. She tried hard to answer the questions that were asked by the doctor or the nurse. Then she began to stare out of the window. We tried to turn down the TV, but we were afraid of changing the program, because after a few minutes she returned to her world watching a motorcycle race on TV. To interrupt the television was as if to let her drown in a sea of ​​loneliness and tough depression, to deprive her of the last lifeline, to leave her without breath. After checking the blood pressure and glucose level and trying to talk to her about medication, we went away and Bogdan told us he was going to talk to her daughter-in-law to let her know how to administer the drugs.

The nastiness of the disease can sometimes make you think that there is no solution and I couldn’t help but ask myself what more could I do? Seeing such a lonely woman, I wondered what would have happened if she had received different support, a different social background – could maybe her life be better?

The Fourth Day: Taraclia

                  On the day we went to visit the team in Taraclia the winter came back, the wind was blowing, and the snow settled down on the roads. It was amazing how all the seasons and weather conditions have condensed into such a short time, in less than a week. In Romania there is a tradition called “the old ladies” (since old ladies in the villages used to wear different clothes at the same time on top of one another taking them off them as the winter transformed into spring): at the beginning of March, each person used to choose one day between the 1st and the 9th of March and waited to see how it would turn out: sunny, rainy, snowy. Any combination was possible, and the weather changed from one day to the next: intense and burning sun, soft greyish endless rain, or several seasons in the same day. Seldom during another time of the year did the weather change so frivolously. It was said that the person’s mood and temper during that entire year would resemble that of the chosen day. Nature displayed its mood and human beings followed suit.

                  In Taraclia almost only Russian was spoken, since there was a large Bulgarian community. However, diseases and poverty seemed the same as everywhere. Mobile team visits, the medication they received for pain were a real rescue for all those living in such scattered and distant areas. One of the patients was a middle-aged man suffering from esophageal cancer with a hoarse voice. With a mixture of physical pain and rage against his unfair fate, he told us: “Some days are better, others are not. This is one of the latter.” The doctor talked with him about his condition during the past few days and about his medication as well. Then the man could no longer speak, he became distant, lost in thoughts, and left the room. We understood that our presence did not bring anything good, instead he felt forced to pretend to feel different than what he actually felt.

                  It was only when he waved us goodbye from afar that a faint smile lightened his face, as if the glimmer of hope had finally, if belatedly, arrived.  A cat passed by the window as if it had the power to bring the situation under control.

                  The most moving visit in Taraclia was to a little girl who was 16 years old, but she looked like 8. A few months after her birth she had an infection, a cold with high fever that had not gone down with normal treatments. Additional investigations into her condition were made, but due to a puncture in the spine the little girl was paralyzed. Her physical and mental development stopped, as if frozen. Even worse, her legs were bent in a strange position and the little girl could not even sit. She could not talk, she was making only some unnatural noises when she responded to her mother’s questions, but her eyes were unable to focus. All her psychic and emotional development had been compromised. The girl’s mother had had serious drinking problems for many years and it had forced authorities to intervene. Now the mother seemed to live a life as close to normal as she could, at least she did not drink anymore, and she had a job.

                  The surrounding poverty was striking, there was no solution, and the mother had to take care of the child who had no hope. All her life she would be in this condition, she could not even be put into a wheelchair. There was no recovery treatment to improve the situation. She also needed diapers because she could not move at all. As if it hadn’t been already too much to bear, I saw her younger sister, sitting at a small table in a corner of the room in the dim light doing her lessons. She wrote in a booklet and had a book where I could see the words “Russian – Romanian dictionary”. I thought what kind of life could the poor child have? What chances did she have for a decent life, an education? She learns well at school, we were told. She looked at us with bewilderment and apprehension, and I tried to smile back to her with encouragement. How could she be happy? Did she feel lucky to be whole and healthy; could she hope for something different and better? Time will tell but I couldn’t help but feel that life is so unfair sometimes.

The fourth day: Cahul

                  The last visit to an ill patient has given me a memory I will never forget. I can still see the patient, a 53-year-old woman with uterine cancer, slightly older than me, who had “lost” or was about to lose the battle with cancer. I wonder sometimes if telling a patient that they will overcome cancer is lying to them and causes more harm than comfort. . Perhaps the phrase “You will overcome cancer” is an overall phrase we use to encompass all kinds of encouragement. Many times, the terminally ill come to accept the disease, to resign and to make peace with themselves, and we will no longer help if we say “Keep fighting”.

She was lying in her bed, we saw her from a distance and she was the classical picture of a cancer patient which you see in cancer fighting campaigns – a mature women with short soft hair, almost disfigured after countless sessions of chemotherapy. She had an extremely pale face, white as marble, translucent, as if the blood that went through her veins could no longer bring her life, as if her life was slowly leaving her body. On a chair, there were a few bottles of medicine which were within her reach, though it was hard to imagine that the lady had the power to take them without help. Her recent tests showed that her haemoglobin level was extremely low. The nurse measured her glucose level using her tools, and the glucose had increased beyond 100. Still, she had managed to eat something. She managed to express in a low voice that she was bloated and constipated. She was given an injection of Papaverine and given Espumisan to relieve her bloating. She was given Morphine injections in the morning and in the evening. Another woman, who was not a relative, cared for her, both living in a rented house. The doctor told us that her condition had worsened in the last few weeks.

The doctor told the patient she wanted to take her to hospital for transfusion and other treatments. This is an advantage in Cahul because the mobile team operate in the hospital, and the doctor, being permanently employed there, can hospitalize the patient at the recommendation of family doctors to try to improve conditions.

                  But we wondered if the patient could survive until then- it seemed that there were only days or hours before the end. I will never know, but I imagine that she has now died. She appeared to me, as Anna Ahmatova said, “that accidental guest in a dreadful body,” who eventually decided to leave.

                  Also in Cahul we had previously seen an older man suffering of lung cancer who complained of chest pain. During the examination of his lungs, the patient confessed, however, that he had applied a plaster of Fentanyl, even though he was given morphine injections 3 times a day. The doctor removed the plaster and told the patient’s daughter-in-law, who cared for him, to administer oral analgesics between the morphine injections without using the plaster at the same time. If there was pain, she should call the mobile team rather than deciding the treatments themselves. It was the fear of pain, rather than the pain itself, which had made him apply the fentanyl patch.

                  At the end of my trip I realized that for each of the people we visited the question was not how to get cured, but how to live, and this was much harder to answer. My experience seemed so crushing that I had the sense that something in my life had ended, my image of myself as a whole or normal person maybe. I realized my life would be full of mundane physical suffering, and that there was nothing special about it. Suffering wouldn’t make me special, and pretending not to suffer wouldn’t make me special. Talking about it, or even writing about it, would not transform the suffering into something useful. Nothing would… and yet, as Atul Gawande said, describing the condition of the terminally ill: “Better is possible. It does not take genius. It takes diligence. It takes moral clarity. It takes ingenuity. And above all, it takes a willingness to try.” 

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