On days of doctor´s office visit, or those when she is not feeling well and thinks it is a good idea to ask a doctor if the discomfort is related to her treatment, Leyda's day begins at 5 a.m. or perhaps earlier. She has to leave food prepared for her young children, find someone to take care of her two-year-old granddaughter and leave to catch a bus from Tabay to Mérida. Her daughter, a twenty-five year old girl, has become her shadow in spite of having to take care of her own family.
Four years ago Leyda was diagnosed with breast cancer. She was 46 years old and the breadwinner of a household that was struggling to cope with the country`s situation.
I weighed 39 kilos. I was in a wheelchair, in bad shape. Sometimes I thought I would never recover, but, as you can see, I did.
Against all odds, despite the fact that her treatment has not been carried out according to the exact indications of the protocol, Leyda has managed to win some trials against cancer.
So far, my husband's salary, my son-in-law's work and any little income one may have is what is used to invest in my health. It was only at the beginning when we had to make a collection at family level, and now that we are looking for help with private foundations and things like that, because treatments have been interrupted sometimes, medicines do not arrive on time, or things get complicated and you do not know what will happen to you.
She is elusive, has the distrustful eyes of the Andean people and does not like to talk much. She only breaks the ice to celebrate with laughter the triumph of "being fat". Although she is still waiting for a surgical solution for the tumor that invades her right breast, (so far all efforts to do so have been unsuccessful because she has no way to pay for it) at least she remains stable and with little fear of the disease. Her only fear is very different.
The IAHULA Oncology Unit is strangely empty today. Outside, the city celebrates a sporting event that has traffic congested, there is little public transportation and, the news about the Omicron variant of COVID 19 seems to be causing, once again, some loneliness in the streets. In the corridors, a young resident in his last year of Internal Medicine is looking for someone to ask about a case; it is Dr. Ancheta, one of the very few residents who dares to approach the cold basement of the hospital.
- If it weren't for the patients, this would be a desert - laughs a dynamic nurse who seems to know all the intricacies of the unit. Dr. Ancheta smiles knowingly.
- What happens is that in the Unit there is no medical oncologist in charge - he explains shyly - so, when we want to know details of a case hospitalized on the floor, under our care, we have to "sneak" into some medical discussions or simply study on our own to see if we can get it right.
- I am interested in oncology, perhaps as a secondary specialty, although I think I will not be able to take it because I would have to move to Valencia or Caracas and I cannot afford it; but, anyway, as a student in the last year of Internal Medicine, I have never been able to sit down with a medical oncologist to talk about this or any other case, because that is not at our schedule.
He is referring to the rotations in the Oncology area that would do so much good to the high demand of the IAHULA Unit that takes care of cancer patients: 300 patients per month attended, as it can be, by a team of less than 30 people in which there are only two doctors: a pediatric oncologist and an internist.
Perhaps due to the chaos outside the city, neither of them was able to reach the hospital today. The unusual solitude of these corridors, however, gives no respite. Not, at least, for Ancheta and Edgardo, a patient in her care hospitalized for Parotid Epidermoid Cancer whose treatment requires urgent radiotherapy.
Edgardo, as well as Julio, are two well-known patients in the Unit: both with the same type of cancer are living the misfortune that the external lesions of the disease are completely erasing their faces. It has already happened to Julio, who languishes, faceless, in the terminal stage of this horrible form of cancer, hopeless, waiting for a death that takes a long time to come.
The young internist grimaces in anguish:
- Theirs would have been significantly reduced if they had received radiotherapy. But in Merida we do not have the operational equipment and they could not afford to travel to one of the only four public radiotherapy centers that exist in Venezuela.
Ironically, however, one reality escapes: IAHULA has the equipment to do radiotherapy. It has been out of service for 7 years and it costs approximately $120,000 to repair it. So far it seems impossible.
The linear accelerator (equipo para radioterapiasequipment for radiotherapies) has been a political flag of many people as I understand; in the almost three years I have been in graduate school and before that in the years of my career, I have seen every politician who has anything to do with the state government get interested in it. I guess it's pure politicking, " he says, as he lifts his shoulders helplessly.
In addition to the lack of equipment, there is a more delicate problem: to apply radium, a specialist in oncological radiology is needed and that´s a professional who does not live in Merida.
And then we have to talk about money.
Founded 30 years ago, the Unit, like most of the medical initiatives that have given good fame to the Hospital of the city of Merida, began its activities under the auspices of the “good old times”: an excellent group of professionals specialized in the area, willing to provide the best of services. They did so, until the country began to fall apart. Then the Unit, like everything else, began a period of attrition that has not stopped yet.
- This is a disaster - Ancheta sums it up impatiently.
Seen from the outside, however, the disaster is not so notorious. Yes, it is true that the offices are dilapidated and some days they are flooded. It is also true that the waiting area has to be located in the outside corridor at the mercy of the humidity and cold of the basement; and that the paper on which the necessary receipts and reports are written is recycled paper brought in by the patients themselves; but, thanks to the spirit of some health workers who are still committed to whatever good their profession has to offer, things - from the outside - do not look so bad. The problem is gnawing at the guts and it is called budget: the Oncology Unit has no operating budget of its own. No unit of IAHULA does.
The Hospital hardly has any public money for operating expenses, although this is not recognized.
In times of a Complex Humanitarian Emergency, that may be one of the reasons to justify the diaspora that is destroying the hopes of cancer patients who cannot turn to private medicine (the vast majority). A doctor at IAHULA receives an average salary of about $10 per month. The nursing staff a little less. It is obvious to think that, at that price, very few of them will keep a commitment going.
Most of the specialists have emigrated. Those who have not, devote themselves exclusively to private practice. Only a couple of well-known oncologists in the private field maintain a close relationship with the Hospital and even accept to follow up some patients free of charge in their offices. Nothing else. Most of them are attended by internists who supply with human quality what they lack in knowledge.
Auxiliadora is 67 years old, has an 89-year-old aunt who cannot walk and a 30-year-old son who lives with Down's Syndrome. In addition, she has breast cancer diagnosed 4 years ago. Together with Leyda, she is in the group of veterans and has endured everything that can happen to a cancer patient, with an added bonus: she required psychiatric care.
- Everything came together and I collapsed, I was hospitalized for 28 days in the San Juan de Dios hospital (a private (charity) operated psychiatric hospital in Merida available to underprivileged people) and they treated me there. It was very difficult for me to understand what was happening and dedicate time to my family at the same time; to understand that I am alone in this, that my daughter moved to Peru. I went into a horrible depression, not because of fear of death, but because I thought that being a professional and having worked all my life, I could not even begin to think about paying for the expenses of the disease.
It was a friend who managed to get her into the psychiatric hospital and it is that same friend who keeps encouraging her and making sure that the shadows of mental illness do not return. Auxiliadora has not been able to overcome her cancer and that keeps her on the edge.
- There has been no psychiatric care for cancer patients for many years. That is difficult because the first thing that happens to a person when they receive such a diagnosis is a big drop in their spirits. They not only have to deal with the disease, but with the circumstances, the discomfort and the possibility of death. What they face is very hard - once again, Dr. Ancheta explains the picture.
- I go there, little by little - continues Auxiliadora, a lady who maintains the coquetry of her good years and the llanero tone of voice of her origin I do what I can, I have sold almost everything I can sell, I have made loans to all my acquaintances and friends to whom I pay a little at a time and I ask for help. My priorities have changed and, for example, food is no longer the most important expense in my house. If I have to choose between medicine and a kilo of cheese, I choose medicine, without hesitation.
She skips over the details of psychiatric care that affected her so much some time ago and insists that the lack of medicines is the worst of the problems they all face. In the IAHULA pharmacy for cancer patients there are only a few chemotherapies and a few things to treat pain. Almost everything else is at the patient's expense; for example, the medicines that need to be applied to "prepare" a patient for each cycle of chemotherapies, as well as those that minimize side effects. If an emergency arises during the application of chemotherapy, the patient's family must respond by supplying what is needed. The Unit will hardly be able to cope with the response because it simply does not have the means to do so.
That's the biggest fear, that's why I think I was so upset at the beginning, I knew what I was facing, she says as she affectionately squeezes Dr. Ancheta's hand; for a moment, Dr. Ancheta's eyes cloud over.
- It's hard for me to come here. I don't have to because this is not my scheduled rotation; but, I can't help but lend a hand to the Unit. Maybe it's because I'm too aware of the immense need that exists - it's his incantation for tears that were about to escape.
- It's hard for me to come here. I don't have to because this is not my scheduled rotation; but, I can't help but lend a hand to the Unit. Maybe it's because I'm too aware of the immense need that exists - it's his incantation for tears that were about to escape. Noon is approaching. The Unit begins to empty. Today there are no patients to whom to apply "protocols" (chemotherapies) the consultations have flowed in their most basic form because the doctors in charge have not been able to get to their jobs and Ancheta is not a doctor in the Unit, so he does not dare to formally consult. Both of us, without realizing it, walk towards the exit.
- Doctor, do you believe that Merida is still a national reference in health? - - I venture a question whose answer seems impossible for me to predict.
- In a way yes - he answers to my surprise - a while ago I said that this is a disaster and it is; but, here at least there is something. There are many cities where there are no options.
Ancheta opens her phone and shows me a list: the places where a patient can access radiotherapy in Venezuela, I count twelve in the whole country; only four are of public access: those located ar the states of Lara, Guárico, Portuguesa and Zulia.
Like this one, there are plenty of lists here, to give to the patient and tell they to make a decision according to what they can afford to do. –
Do you remember the slogan that said "cancer is curable if diagnosed early"? Well, in Venezuela, cancer is curable if you have a lot of money, good contacts and luck. Early diagnosis; well, that helps too he sentences, lapidary, while he opens the heavy glass door that returns the visitor and the patient to the reality of a sports competition.