We are happy to share with you the wonderful report written by Mrs Lavinia Ionita, the wife of the Romanian Ambassador to Moldova and one of our most devoted volunteers, during a five-day trip within the five mobile teams part of the Hospices of Hope Moldova Network, in the districts of Cahul, Ocnita, Orhei, Soroca and Taraclia. She compelled to write notes of all her time spent visiting patients and teams, at the end of the winter 2019. Her observations make for an authentic, raw insight into a world most of us can’t even imagine.
Everywhere in Moldova, but particularly in the northern part, there is fear to pronounce the word ”cancer” as if the simple uttering causes an almost immediate death, brings about its effects or merely speeds up the inevitable outcome. Everything starts from the older perception that the disease is a definitive condemnation to death and to an unambiguous and gritty path, the same for all. The lack of information related to the distinct stages of the disease, or to the steps forward that have occurred during time determines this unsophisticated approach. That’s perhaps why, the word ”patients” is not used, they prefer to call the ill persons ”beneficiaries”.
Any visit to an ill person has the potential to surprise 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 seeing such a person for the very first time. Each ailing person has his or her own personal way of reacting and choosing, most often involuntarily, how to cope with the disease, but undoubtedly it depends on temper, personal history, education, and the culture he lives in. Some patients are often concerned with the impression they leave on visitors, others are simply captive in their inner world, even totally lost within it.
First day: Ocnița
We were greeted in Ocnița by Natalia, the doctor, together with some nurses and ladies suffering from cancer, or wives of 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.
We paid the first visit to a lady who was suffering from ovarian cancer and lived alone in her house. It was the afternoon of a winter day; however the dazzling rays of the sun anticipated the imminent arrival of the spring. The entire house and the yard were highlighted as if under reflector beams. The contours of the house and other outer small rooms, the summer kitchen, were flooded with light and one could easily notice the order and cleanliness. I first 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 and he also sent her money. At that moment I become aware that it was not appropriate to go inside, there was something that told me we should no put her in an unconformable position where to worry whether her house was spotless enough. We spoke then about some common things, and the conversation seemed natural and open, as if we were not facing an ill person. At some point, almost suddenly, she burst into tears and cried softly as she spoke not about the illness and suffering, but most about loneliness. We could see a dog and a cat in the yard though. Animals, either dogs or cats, could be encountered in so many of the households and they seemed proper members of the families; they had a curative, therapeutic, effect: an almost magical power to indirectly support the patients.
Mrs. Natalia wanted to speak alone with the patient in the end, because she, as many others, was embarrassed to talk about her physical condition, about the necessity to wear diapers; she wanted to hide her stoma bag and to disclose nothing about the hideous condition of her being.
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 power to have someone replace it.
When in the presence of an ill or suffering person you wonder which encouraging words seem the most appropriate; but most 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 redundant position where no comfort can be that easily granted. You just look at them and do not even dare to wonder 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 narrative 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 an incurably ill person and no words of comfort could come to me; it seemed that on that day prefiguring spring it was only the sun that could give optimism.
The second person in Ocnița was an elder woman suffering also 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 inside 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. In a few moments, 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 granted the same preferential treatment and was not allowed to climb the bed. Perhaps that was because we were there, I thought. How effortlessly can very poor people take care of animals! They had 9 cats and 7 dogs and there wouldn’t have been any wonder if other stray cats came and were adopted.
However, what surprised me the most was the lady’s attitude: she was so extroverted and she enjoyed chatting greatly. The patient and Mrs. 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 most probably did not have much education, suddenly she 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 passed her by, she added. She hinted thus to the following Sunday, the Dragobete, the traditional celebration of love and the equivalent of Valentine’s day; furthermore, 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 focussed on the present moment, everything is good for now, we can enjoy this moment”. The patient had been hospitalized recently, but she recovered and she was better than some months before. The care received from the palliative care mobile team reached its purpose, it both prolonged life and the quality of life was re-established, even increased.
As in the first case the discussion related to the 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 a picture so idyllic and full of clarity: that 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.
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 seemed to have surrounded us. But even then, suddenly some 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 bedridden 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 very subjective but unambiguous belief that all 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 off. She was talking about her desire to be with her granddaughter, to be present at the wedding; all felt like deadlines and her hope persistently struggled against all impediments.
Also in Orhei we visited a deaf-mute patient suffering from colon and bladder cancer; here the doctor focused on the pain management scheme. His wife administered the injections of morphine twice a day and also the patient took oral analgesics in between to try to keep the pain under a certain level. In this case, 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. If in many cases people yearn to communicate about other things, here the discussion was visibly only 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 informed about the need to increase the number of doses or the amount of a morphine dose.
The Third Day: Soroca
If at Orhei we met maybe the wealthiest of the patients, in Soroca 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. That was not all: 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 here was 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 thin like I had never seen before, skin and bone was the accurate definition of what you saw, in fact the bone was unmistakably visible and the skin seemed to be there just to cover that unnaturally thin and long bone. He was so weak, breathing hard and the first injected drug, Dexalgin, had the purpose to relax his muscles and to allow him to breathe more easily. His wife, a woman still young, who spoke Russian mixed with Romanian, had got used to injecting him with morphine and she seemed to be fit enough to complain about her mother-in-law who was living in a three-room flat with no wish to host any of his 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, operated, with pain in her arms; she moved with difficulty and complained of insomnia. The doctor, now retired, had been an ER doctor and the illness and the pain could not teach him anything new to what he had encountered before. The nurse, Bogdan, was young but very dexterous and gave the lady some sleep, pain and stomach medication. The old 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, she just wanted to postpone thinking about medicine again. She spoke that Moldavian language full of archaic and eccentric words I had learned from my grandmother; I do not know what reminded me of her, perhaps the way she was lamenting about loneliness. As if any remedy against loneliness would have been against the disease itself; physical suffering seemed not to break her as loneliness did. The way all these old people spoke definitely indicated they needed someone to talk to, and from this point of view the visits of the mobile team meant a lot, they managed to get them out of their mundane black 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 how much she had liked to go to the church and to visit monasteries. However, now she almost 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 had put some clothes to wash on the fireplace but she declined any 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 then added: ”Take care of your health care, this is the most important thing, and take care of your life companion, for loneliness also kills.”
The last patient we visited in Soroca was a younger lady who was suffering of 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 intently 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 let her grasping without breath. After checking the blood pressure and glucose level and trying to communicate 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 medicine, as he used to do.
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 abruptly, the wind was blowing mercilessly, and the snow took courage again and settled down on roads. Amazing how all seasons and weather conditions have condensed in 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 discharging 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 grayish 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 whimsical mood and human beings followed suit.
In Taraclia almost only Russian was spoken, since there lived a large Bulgarian community. However, diseases and poverty seemed the same as everywhere. Mobile team visits, the medication they received for pain and other related illnesses were a real rescue for all those living in such scattered and distant areas. One of the patients, a middle-aged man suffering from esophageal cancer with a hoarse voice denoting a mixture of physical pain and rage against an unfair fate told us: “Some days are better, others are not. This is one of the latter.” The doctor talked with him about his state during the past few days and about the 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, just forced him to pretend to be different than what he basically 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, nevertheless, passed by the window. She had the duty to instill power; the situation was now 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 occurred, a puncture in the spine went totally wrong and the result was frightening: the little girl remained 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 blocked on nothing. All her psychic and motion development had been compromised. The girl’s mother had had serious drinking problems for many years in a row, their situation had been desperate, but authorities also intervened, and 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 would be in that position, 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 then I saw her younger sister, sitting at a small table in a corner of the room in the dim light and doing her lessons. She wrote in a booklet and had a book on whose pages I could see ”Russian – Romanian dictionary”. 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. To what extent 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 life is so unfair, sometimes.
The Fifth day: Cahul
The last visit to an ill patient has been imprinted in my mind profoundly and I think I may be able to reconstitute those moments with enormous clarity forever from now on; I can see before my eyes the delicate and beautiful profile of that 53-year-old woman with uterine cancer, slightly older than me, who, as one might say, “lost” or was about to lose the battle with cancer. I have often wondered if phrases such as “You will overcome cancer” do not contain, too often, a lie and can produce some negative effects on the patient and sometimes even on the one who tries to comfort. Perhaps this phrase is more a reflection of speech, of the various kinds of encouragement. The suggestion is that the disease is a battle that can be lost and then this is a failure of the patient. Many times, the incurably 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 represented precisely the classical picture of the cancer patient who we can see portrayed when various cancer campaigns are being conducted: mature women with short soft hair, almost disfigured after countless sessions of chemotherapy: the extremely pale face, white as a marble, translucent, seemed like testimony that sometimes blood can no longer bring life when it goes through the veins, life simply and slowly withdraws from the diseased body. On a chair, there were a few bottles of medicine placed at hand, though it was hard to imagine that the lady had the power to take them alone. The haemoglobin level was indeed extremely low, as recent tests indicated. The nurse measured her glucose level using the mobile instrument, 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 against bloating. Morphine injections were given in the morning and in the evening. Another woman, who was not a relative, cared for her, both living in that rented house. The lady 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. There is a great benefit 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. It was a tiny hope that the mobile team was trying to instil.
But we wondered if the patient could survive till then, were there days or just hours until the heartbreaking well-known end? I will never know, but I can easily imagine that at any moment she had already died. She had become for 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 accused chest pain. During the examination of the 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. In case of pain she was to call the mobile team without deciding on the treatment themselves. The fear of pain and not the pain itself had made the patient apply that.
At the end of those days I realized that for each of the persons we visited the question was not how to get cured, but how to live, and this was much harder. 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 incurably 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.”
By Lavinia Ionita, March 2019