A semi-structured interview script was used to collect data. It was developed based on a review of scientific articles on the subject, carried out by the investigator and supplemented using the field experience of the last author. The interview was based on an exploration of themes related to the illness and treatment. Questions regarding life before the illness, the impact of the diagnosis, losses experienced during this period, sources of support identified, expectations regarding the treatment and future plans were investigated. Sociodemographic and clinical data were also collected, such as age, education, marital status, profession, diagnosis and duration of illness.

Data collection was carried out individually by the first author, in a face-to-face interview, during a single meeting in a protected environment (outpatient clinic room), safeguarding the principles of comfort and privacy; the survey was performed from January to July 2019; the interview was audio recorded with the consent of the participants and lasted an average 40 minutes.

The interviews were fully transcribed and verbatim. The data were subjected to reflexive thematic analysis, following the steps proposed by Braun and Clarke (2020). This is a method that identifies, analyzes, and reports patterns (themes) in the data obtained. The thematic analysis process was divided into six steps: (a) Familiarize yourself with the data; (b) Generate initial codes; (c) Create themes; (d) Review the themes; (e) Define and name the themes; (f) Produce the report (Braun & Clarke, 2020). The analysis was carried out by the first author, who discussed each step with the other authors until a consensus was reached, before moving on to the subsequent steps.

The study was approved by the Research Ethics Committee, under opinion 2.977.888/2018 and Certificate of Submission for Ethical Appraisal – CAEE: No. 9101521880005407. The study followed ethical procedures of respect for volunteers and the institution, in accordance with Resolution No. 466/12 on research involving human beings (Ministério da Saúde, 2012) and Resolution No. 016/2000 of the Federal Council of Psychology (Conselho Federal de Psicologia, 2000).

This category brought together reports that showed that, at first, there was a reaction of shock followed by an attempt to understand the sudden change in reality prior to the illness and, subsequently, the need to deal with the objective and subjective implications of the recent cancer diagnosis (Oliveira-Cardoso, Garcia, Santos, et al., 2018).

I felt hurt. To say that I didn’t feel any shock is a lie. I was a little scared, but I’m trying to take this a little more open-mindedly. The first thing that comes to mind is the burden we’re going to have to carry, but that only serves to make us stronger. Now, if you ask me: “in what sense do I become stronger?” I don’t know how to answer. (Thiago, 24 years old, ALL)

The fact is that thinking about the possibility of death, especially one’s own finitude, is a distressing and aversive process that tends to be avoided at first. In fact, for some patients it is a psychological content that tends to be repudiated. This difficulty in considering or talking directly about one’s own terminal situation is related not only to psychological defenses, but also to cultural conditioning, since death is seen as a taboo in Western society (Arruda-Colli, Perina, Santos, et al., 2015; Arruda-Colli et al., 2018). Furthermore, there is a widespread belief that talking about death would be equivalent to invoking it or expressing a sign of hopelessness and giving up on life (Cardoso et al., 2018; Franco, 2021). In the context of oncology, death and cancer often appear as synonyms, which makes the diagnosis even more fearful (Almeida et al., 2021; Ambrósio & Santos, 2017; Arruda-Colli et al., 2016; Arruda-Colli et al., 2021; Silva et al., 2019, 2021). Thus, people tenaciously avoid talking and thinking about death and cancer as a way to develop a survival strategy: “Life is not over. Life will still go on and there is a lot for us to experience, I think this is important because we can think: ‘Wow, it’s over’, but it’s not over, we keep moving forward” (Lucas, 58 years old, AML).

The moment of diagnosis is a turning point, experienced amidst a journey of pain and negative expectations. In addition to receiving clear and dosed information, the patient needs to feel welcomed by the professional, and a close, human and warm attitude is valued (Lotério et al., 2022; Oliveira-Cardoso, Garcia, Santos, et al., 2018).

It was a clear way of giving the result, but because I was ignorant about the disease, I didn’t feel very shocked when he said Acute Myeloid Leukemia. I said, “Oh, okay, okay, cool.” So, I didn’t have that knowledge, that whole scope of what it could be (...) then, later, after researching, I really came to know.

The moment of communicating the diagnosis is considered essential not only for raising awareness, but also for planning coping strategies in the face of the adverse situation. The way this happens can impact adherence to treatment, and when communication is well carried out, with clear and accessible language when transmitting information about the disease and the therapeutic proposal, this can alleviate the stigma associated with the social representation of cancer (Figueiredo et al., 2020; Oliveira-Cardoso, Garcia, Santos, et al., 2018; M. A. Santos, 2003). In addition, effective communication helps to deconstruct ideas of guilt in the face of the illness. Of the 10 participants, eight reported believing in possible causes for the disease, which can be understood as an attempt to control the emotional impact and not feel at the mercy of events and fatality. “I thought it could be stress, or emotional, I thought it could be something related to college, but I asked Dr. B. about all this and she said no, that the disease chose me and that was it” (Thiago, 24 years old, ALL).

It is expected that, after receiving the news of the detection of a potentially fatal disease, the patient will experience anticipatory grief for the different losses that he/she has already suffered and for those that may still affect him/her (Almeida et al., 2021; Madeira et al., 2020; Vendruscolo & Santos, 2023). In the participants’ reports, the most significant losses were related to the perceived impairments in the scope of functionality and the sense of autonomy and independence.

I stay like this a lot, without doing anything. I used to do a lot of things before, I liked doing housework. Now I feel very anxious, I don’t do much. Oh, before I was useful, I went shopping, paid bills (...) Now I can’t do that anymore, now my sister does it.

When they lose functionality, even the ability to maintain basic functions, such as eating and performing daily personal hygiene activities, patients feel that the pace of their existence has become slow and boring. “I have had changes in my body (...) now I do things slowly, you know. I sit, breathe, take life slowly (...) My time flows differently from other people’s time” (Caio, 23 years old, ALL).

Contact with bodily changes and limitations, which are expected consequences of diagnosis and treatment, can lead to low self-esteem and dissatisfaction with body image, which is consistent with findings in the literature (Lotério et al., 2022; Ribeiro et al., 2016). “My body changed, it changed a lot. It changed, it became horrible. I lost a lot of weight on my legs, black spots appeared, it was horrible” (Laís, 60 years old, BL).

Another loss that was felt and mourned intensely was that of work/occupational capacity, with the impossibility of continuing to practice the profession that, for many participants, was a substantial part of their daily lives. This limitation stems from both physical weakness and the need for recurrent hospitalizations for treatment (Cardoso et al., 2018). In addition to the feeling of unproductivity, the impossibility of continuing to work also resulted in losses in the financial situation.

The beauty parlor is not mine, I rented a room. When I had to hand it over, I got depressed, you know, I kept thinking about what would happen next: I’m going to lose a little (...) Not a little, right. I’m going to lose clients; after all, people need someone to do their eyebrows. So I don’t know what it’s going to be like.

With occupational impairment and the consequent financial decline, patients also experience significant changes in the role they played within the family (Ribeiro et al., 2016). They often come to be considered the most fragile member of the family and the one who requires the most care, which can be perceived by them as overprotection. “Now I am the family’s trinket; I can’t even fall or I’ll break. It wasn’t like that before” (Thiago, 24 years old, ALL).

One of the concerns expressed with the changes perceived in the performance of roles related to care provided by the family was the discomfort of no longer being able to care for their children, as they did before the illness, and the fear due to the uncertainty about being able to follow their development for a long time (Brito et al., 2022).

I don’t make plans, life takes me along. But I would like to see my two children graduate, so that we can have a little more peace of mind, right? I just want to be able to see that they are well, for me that’s what matters. If they are well, it’s good for me too.

Participants identified several sources of support for coping with and adjusting to the limitations imposed by the disease, with emphasis on religiosity, which appears as a way of believing that there would be a reward awaiting them, whatever the outcome of the treatment, that is, that they would benefit from future gains that would compensate for the current suffering. This finding is consistent with the results obtained by other studies, which point to the importance of spirituality/religiosity in mitigating experiences of pain and suffering (Benites et al., 2017; Benites, Rodin, Leite, et al., 2021; Cunha et al., 2022; Oliveira-Cardoso, Freitas, Santos, et al., 2022; Ribeiro et al., 2016). The bargaining mechanism is also reported by several studies conducted in the oncology setting (Almeida et al., 2021; Benites, Rodin, Oliveira-Cardoso, et al., 2021; Wikert et al., 2021). “She told me that, since my first hospitalization, God had said that there was a purpose in this, in the disease. (...) I just cried here the day I found out that God had a plan for me” (Caio, 23 years old, ALL).

Another important resource that favors the individual’s adaptation to the new condition of a patient living with an onco-hematological disease lies in perceived social support (Ambrósio & Santos, 2015). According to Fonseca (2014), anticipatory grief is organized around the involvement of family members and close friends, who accompany the patient’s journey, offering comfort, care, and help in solving problems and managing conflicts. The perception of family support was a common element in the reports of all participants, who recognized the family’s participation in the various stages of treatment as decisive, from the onset of symptoms, in the period of seeking confirmation of the diagnosis, when receiving the bad news, and during treatment. Even the most distant family members sought ways to offer care and demonstrate concern and attention, whether through long trips to be able to be with the sick family member in person, or through the use of communication technologies, through calls and exchanging messages via apps or communication via social networks.

My relationship with my family has changed a lot. Now they are closer to me. Before, everyone was distant, now it seems like something happened to bring the family together (...). There are people from far away who have already come to visit me. Look, one thing I am is a loved person, I am proud of being like this, because everyone likes me a lot.

Despite being recognized as the main source of support (Ambrósio & Santos, 2011, 2017), the family is also a cause for concern for patients who experience anticipatory grief after being diagnosed with hematologic cancer. Participants reported that they had difficulty communicating the diagnosis to their families; they were concerned about possible negative reactions. Some reports show that the patients themselves had to take on the role of caregiver for healthy family members, reassuring them, often having to put their own suffering on the back burner in order to deal with the demands of the family member who was emotionally shaken by the situation (Almeida et al., 2021).

Then the doctor called, I already knew, but my mother didn’t. Then she came out crying, got to the sidewalk and broke down, saying: “I should give you strength, right?” But I was fine. When they said it was cancer, I was even happy because I had a chance, right?.

The healthcare team professionals were also mentioned as a relevant source of social support by the participants. One highly valued characteristic of the team members was the manifestation of empathy in care. According to the reports, professionals who are able to be clear both in communicating the diagnosis and in conducting the treatment are considered good professionals. The ability to maintain clear communication is evaluated as a resource that facilitates adaptation to the treatment demands and the unpredictable course of the disease. This finding is consistent with what has been reported in the literature (Ambrósio & Santos, 2015; Arruda-Colli, Perina, Mendonça, et al., 2015; Arruda-Colli et al., 2016; Figueiredo et al., 2020; M. A. Santos & Hormanez, 2013).

Dr. R. was an angel. She diagnosed me, I was truly patient. Dr. R. fell from heaven, she did all the work, she wanted to treat me, she told me what I needed. All the doctors here are great, they go through every little detail (...).

In addition to external sources of support identified, patients seek to find coping resources within themselves, based on their personal beliefs and values, life experience and cultural affiliation. Reports of being able to reorganize and reinvent themselves after receiving the diagnosis were common, even under such unfavorable circumstances. Participants took on new social roles and discovered they were capable of performing them, such as the patient who reported that he became a mediator in conflicts between family members and the one who began to develop work projects on the computer. These reports once again highlight how the experience of anticipatory grief can often be seen as a driver of a creative process of learning and redefining life, which favors adaptation to the new reality (Cardoso et al., 2018; Franco, 2021; Garcia et al., 2022; K. G. Souza & Peres, 2012; Torres, 2001).

I believe that I am supporting people more and more, I try to resolve the little issues, you know, because relationships between relatives (...) I try to offer advice, I don’t care if they are rich or poor, I try to help, even more so now that I have time for my cell phone.

Upon receiving the diagnosis, participants came into contact with their own finitude, deconstructing the myth that serious illnesses only happen to other people (P. Sola, Garcia, et al., 2022; P. Sola, Santos, et al., 2022). It is at this moment that reflections on past and future events intensify and the patient becomes more thoughtful and introspective (Torres, 2001). Given the severity of the disease, treatment is started immediately, which requires protective isolation in the hospital unit. This time of seclusion and immobility encourages introspection. The participants in this study confirmed this movement, reporting that they had become more reflective with the new routine and that they sought to fill the time by revisiting memories of important moments in the past, from the death of loved ones, right choices or wrong decisions they made at some point, to happy memories that they would like to live again and share with their loved ones. Thus, they took advantage of the compulsory rest time to give meaning to what had often gone unnoticed in the “rush of life” and which could provide strength to them in that stage of life that they considered challenging (Garcia et al., 2022).

After I came here, I had a lot of time to review everything. And I came to the conclusion that that place [family environment] is doing me a lot of harm, you know? Psychologically it did me a lot of harm, it tested all my possible strengths (...) I think that, if I hadn’t been diagnosed with leukemia and come here, I would have freaked out, because it was almost there.

Participants also reported positive emotional changes (Borges et al., 2006; Garcia et al., 2022), especially heightened sensitivity and empathic capacity, greater availability for contact, and genuine and compassionate concern for the pain of others. “You become more emotional. You become more patient, you become more sensitive to the events around you (...) you see something happening and you put yourself in that person’s shoes, in the shoes of that event” (Lucas, 58 years old, AML).

This movement of awareness and concern for the suffering of others also includes the patient’s fear of inflicting pain on loved ones, especially in the event of death: “I’m not afraid of dying, but I feel sorry for the love they feel for me. Then I’m afraid of leaving them, I’m just afraid of what they’re going to go through. But we all will one day, right?” (Lais, 60 years old, BL).

This intense moment of reflection about life encouraged a profound review of values about what is a priority and genuinely relevant in life and a clearer identification of what really needs to be taken care of.

Ah, I think that we are in this world and we don’t know how for how long, right, so I think you have to give more value to things, to everything, like, you have to have (...). The value changes, right? You think more about the things you are going to do, what you are going to say, so I think that’s it.

Some patients reported the desire to work on resolving pending conflicts, something that is frequently reported in the literature in the area (Benites et al., 2017; Cardoso et al., 2018; Lotério et al., 2022). It is noted that the experience of approaching the end of one’s life was perceived as important for the reevaluation of one’s own life, as it brought some relief and gave perspective, including to return to making plans for the future (Cardoso et al., 2018). “I’m much happier now. When you’ve had a near-death experience, every new day is a joy. Oh, I plan on going to college, getting a good job, joining a gym, being a little bit healthier now” (Nichollas, 22 years old, AML).

Some participants reported having plans and expectations for the future, although some expressed doubts about the possibility of achieving them (Garcia et al, 2022). Several said they had long-term plans.

In 10 years, I will be 62 years old, I hope to be traveling, with grandchildren, that has always been my dream, and I think I will fulfill it. My plans for the future are to always believe more in God and whatever I can do for others, do it with a good heart.

The elaboration of plans for the post-mortem period was also mentioned, but always involving a positive perspective, with a feeling of hope for a better future.

I believe that we are on a very complex plane, compared to the size of the universe and the size of God. I believe in the Gospel and that the Father will return. The Father who resurrected on the third day. Our faith and hope is that He will be resurrected. Every tree, every plant has a cycle, right? It is born, grows, produces seeds, bears fruit and dies. It is the cycle of life, right?.

Corroborating the findings of Garcia et al. (2022), we observed an alternation between moments of discouragement and periods of faith and hope in the prolongation of life. After the initial impact, an opportunity for introspection arose, with a possibility of opening up to reflection and an impulse for change, based on the appreciation of the fact of being alive. At the same time, a sharper and more reflective perception about death and the recognition of the temporal limitation of existence developed. In this context, anticipatory mourning seems to assume a dual function: preparing for the encounter with finitude and, simultaneously, increasing awareness of the value of life, reaffirming the need to enjoy it while there is still life.

These findings corroborate the need to offer a space for listening and psychological support to patients and family members who face diseases that threaten the continuity of life, particularly those that involve a potential to lead to terminal illness (Benites, Rodin, Leite, et al., 2021; Madeira et al., 2020; Oliveira et al., 2010; Pozzada et al., 2022; P. P. B. Sola et al., 2023; K. G. Souza & Peres, 2012).

When viewed comprehensively, the need to embrace suffering and provide space for the expression and circulation of emotions and feelings, such as fear and anguish, becomes evident. It is also important to value the discoveries and adaptive resources that patients develop throughout the treatment process. Elements such as faith and religiosity, adaptation to new roles and resolution of pending issues should be strengthened when they appear as sources of social and emotional support recognized by patients.

It is important that professionals are well trained and prepared to deal with a range of emotional reactions from the patient from pre-diagnosis (Oliveira-Cardoso, Santos, Sola, et al., 2022; L. Rossi & Santos, 2003), and that they are able to conduct treatment respecting the particularities of each person’s personality, providing a safe environment so that they can experience grief in their own time. The need for qualification extends to listening to family members (Ambrósio & Santos, 2011; J. H. C. Santos et al., 2022; Silva et al., 2021). It is important that the patient’s family also be accompanied by the specialized service, since members also appear fragile when experiencing anticipatory grief due to the possible loss of a loved one (Ambrósio & Santos, 2017; Benites et al., 2022; Silva et al., 2019).

It has been found that, once the initial emotional impact of the diagnosis has been overcome, this delicate moment in life can be experienced as a catalyst for change processes. Despite dealing with and suffering losses of different kinds, patients develop personal resources that favor adjustment to the disease and use this turning point in life to take a reflective pause. Introspection fosters reflections on the meaning of existence and encourages them to take stock of what they have experienced up until that point, which is important for paving the way for gradual disengagement from loved ones and the material aspects of existence.

In this scenario, anticipatory grief helps the patient prepare cognitively and emotionally for the possible coexistence with a chronic illness or for imminent death, and is also an anticipated process of learning about dying that allows one to reposition oneself in the face of life. In this way, the experience of anticipatory grief can be seen as an opportunity to acquire resources for adapting to a new reality imposed by serious illness. It is a complex process, in which each individual can reframe, in a unique and singular way, the suffering caused by countless losses, the acceptance of the diagnosis as a fact of existence and the meditation on the value of life.

Within the emotionally detached and impersonal environment of the hospital, where the subjective dimensions of the illness experience tend to be overlooked or suppressed, and care is exclusively focused on organic emergencies, the healthcare team needs to be aware of its role, since it is recognized and valued by patients as a coping resource, as long as the professional is perceived as empathetic, close and authentic in his/her approach. It is important to emphasize the need for special attention when communicating the diagnosis, since just as important as adequately transmitting the information is the ability to accommodate the emotional demands of the patient and their family members in the transition to the unpredictable situations of illness.