An oncology patient. An oncology doctor. Here we mirror the versions of two different roles, from two unique perspectives regarding the same situation: cancer disease. In the last months, they have been experiencing an even tougher, more exhausting reality at the Oncology Department of the CHULN - Santa Maria Hospital.
With the emergence of this pandemic, we know that many consultations have been postponed, many surgeries cancelled, many treatments deferred. And in this area, where time plays a vital role and waiting for a result can make a difference, there is a more palpable and painful anxiety.
And it is distressing to realise what is missing. According to the words of those who are there every day, one of the aspects they miss the most is the comfort brought about by touching, physical proximity, hugging, or, to put it another way, everything that makes us unique and human: our ability to make other peoples' pains and hopes our own through physical contact.
Patient at the CHULN Oncology Department - Santa Maria
(out of respect for the patient's personal will, who wanted to remain anonymous, her identity will not be revealed)
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Tell us a little bit about yourself, your situation, and when you started having treatment at Santa Maria Hospital.
I was diagnosed with a breast carcinoma in November and started treatments on 26 December.
What did you feel when the pandemic came? What were you afraid of?
I was scared, of course. In addition to being old, I have a serious illness and I am immunosuppressed. In other words: if the virus catches me... I will die!
What changed in your routine and what differences did you notice when visiting the hospital in the early times of the pandemic?
It was difficult because I could no longer have company when going to hospital to receive treatment and because I sometimes felt an atmosphere of almost terror when a Covid patient passed by on a stretcher and the security guards told us to lean against the walls or move fast, and the stretcher bearers went by at high speed, causing a feeling of risk of infection that frightened me. The worst was when I was hospitalized, with pneumonitis (reaction to chemotherapy) and spent 11 days without visits. It was really tough.
What do you think of the various health professionals in terms of the way they acted?
I only have good things to say about health professionals. Very competent, very hardworking and very careful about safety. Sometimes, there is one or another who is not so friendly, but it is normal. This happens in all professions.
Do you feel that there have been changes in the doctor-patient relationship? What kind of changes?
I do not think so. In addition to the obvious and necessary changes so that everyone's safety is not at risk, I believe that everything remained unaltered.
Do you feel that there may have been change or worsening in people's health due to the pandemic?
I think there may have been a lot of people who avoided going to hospital for fear of catching Covid-19, worsening their condition. Maybe they used to go more regularly and now they only go as a last resort (the worst is when they go too late).
Over the past months, do you have any good memories or examples of courage?
There are always good things in bad things: neighbours who brought cakes, phone calls to find out how I was, a union that helps to gain strength.
And how do you see the present situation?
I think there are a lot of doubts. It seems that nobody knows very well what they are dealing with and there is conflicting information. There is fear, on the one hand, there are those who have already lost it, on the other, no one really knows how to act. Even regarding the information coming from the DGS and the WHO, I feel that there is no clear-cut approach, there is some unconnected information, typical of those who don’t really know what to do. At the hospital, all care is maintained and I end up feeling safe.
We would like you, if you agree, to make one last comment about how you have experienced these times and challenges, especially in the very delicate moment that you live in.
I think that this virus has come at a particularly difficult time in my life, and there a double risk for me. Having cancer was bad enough, having cancer in the middle of a pandemic is a double dose of bad luck. But it is necessary to maintain sanity and believe that it will go well. And keep on living! I don't think barricading myself at home for years (yes, because it can last for years) accounts for life quality. So, and with the utmost care, I try to go back to life.
Dr. Rita Paiva
(Physician in the Oncology Department at CHULN - Santa Maria Hospital)
Tell us a little about yourself, your academic and professional path and how your work has been like here at Santa Maria Hospital.
Rita Paiva: I entered the Faculty of Medicine of Lisbon in 2007 and completed the Integrated Master Degree in Medicine in 2013. I worked the first year as an intern of the common year at Vila Franca de Xira Hospital and later I entered the Medical Oncology specialty at Santa Maria Hospital in January 2015. I am currently finishing the specialty.
I know that when the pandemic was declared, you were in the United Kingdom. How did you live those moments?
Rita Paiva: When the pandemic was declared, I was in Manchester undertaking a Lung Cancer internship. It was a complicated situation, there was already some state of alert in the United Kingdom, but, in general, people were very relaxed. We were not advised to wear a mask, not even in the hospital, which, as the days went by, left me more and more uncomfortable and afraid. I was following the news of what was going on in Portugal and I began to consider returning when the probability of the state of emergency being declared was talked about. It was a difficult decision because it meant that I was going to miss the internship, jeopardizing my professional career. However, I chose to return, not only because there was the possibility of the borders closing down and not being able to return, but also because I would be more useful as a doctor in my country. There were moments of great anxiety and uncertainty and traveling at that time was, without a doubt, one of the most uncomfortable moments I experienced in the pandemic.
What differences did you notice in your service in Santa Maria and in people's behaviour?
Rita Paiva: In my service, several measures were implemented to minimize contact between people, and a contingency plan was put in place. Assistance activity has never stopped for patients undergoing treatment. Monitoring consultations were carried out by telephone. Despite all the changes and adaptation to a new way of being (such as the mandatory use of a mask, hospital uniform and hand disinfection even more frequently than usual) that generated a lot of anxiety, I want to highlight a positive point, which was team spirit. I feel that the pandemic strengthened the bonds between people in the service and improved cooperation, so that everything went as smoothly as possible and we started to work more as a team than before.
Do you feel that there have been changes in the doctor-patient relationship? If so, what kind of changes?
Rita Paiva: I don't feel that there have been any major changes. The only major change was regarding touching. We ceased to greet the patients, which at first was a difficult habit to break, but above all the lack of a touch of comfort was the most difficult. Not being able to comfort the sick when they are not well, with a simple touch on the hand or even a hug, I think makes a lot of difference in our relationship as human beings and makes everything more impersonal. Especially in the oncology specialty, I think it makes even more difference.
And to what extent could the pandemic have aggravated some health issues in the area of Oncology?
Rita Paiva: In our service, there was no change in terms of response to patients referred to us, nor were treatments postponed by the pandemic. However, there may have been a decrease in the number of diagnoses, which I think occurred for two reasons: first, because some patients feared resorting to health services, delaying the investigation of symptoms pointing to neoplasms, and then the deferment of most primary health care activities responsible for most diagnoses, and also the reduction of diagnostic tests.
Where do you feel you had to adapt to your job? And on a personal level?
Rita Paiva: In terms of work, most of the adaptations were those mentioned previously, such as changes in the circuits of people, especially in relation to the rest of the hospital, the use of a mask and the increase in bureaucracy regarding the requests for COVID-19 screening tests, tests and other exams, which make us lose a lot of consultation time. On a personal level, it was a difficult adaptation during the state of emergency because I ended up being isolated from my family, boyfriend and friends, with whom I had no face-to-face contact for two months.
What knowledge do you feel you gained? What was the positive and negative learning?
Rita Paiva: I feel like I learned to give more value to the things we take for granted, like the touch I talked about earlier, and the hugs to the people we like and especially the freedom to be able to move around without restrictions, to be able to simply be on a terrace with friends, without fear. I think I started to value the little things in life more, the value we never give them because we think they are acquired. I don't think I had any negative learning, even the most negative things that were happening were important for my growth as a doctor and as a person.
And now, after a few months of pandemic, what is your assessment?
Rita Paiva: On a personal level, I think that, despite everything, the assessment is positive, because all these changes have contributed to growth. However, I am a little concerned about the situation in the country, which makes me feel a little anxious. I feel that there is a lot of misinformation and that people are too relaxed, and that most have not learned much from the lockdown. It saddens and worries me. Globally, the balance is not positive, we are going through the worst period of the pandemic in Portugal and I think that the appropriate measures are not being taken.
Sónia Teixeira
Editorial Team