LAURA

“Online therapy has been for me a window of fresh air and clarity into my black and exhausted mind. It is the only place where I can express what I feel and how I feel without being looked as a stranger.”

CRISTINA

“The Online therapy (the Refuge) has meant for me a space where to take off the emotional armor that I had used to protect myself during treatment. There, I was able to share, without fear, feelings that seemed to be contradictory.  These feelings turned out to be common among many oncological patients”.

CHARO

“The online therapy was for me the opportunity of sharing my illness and my feelings with others. I felt reflected on them. It was a mirror that returned my image in other faces with which I normally had no need to explain nothing, because they already knew the emotional chaos I was experiencing after this disease, which changes you inside and out”.

ELISENDA

“If I had to define, using a single adjective, the personal meaning of the online therapy, this would be: REFUGE, in its widest meaning. Every Wednesday evening I was alone at home, in front of my computer, connected to young women like me, sharing experiences, feelings, thoughts and emotions that I could hardly share with anyone else and who were able to understand me upt to that point… There was a huge harmony between all of us. Through the screen, we established, since the initial sessions, an unexpected strong connection, which led us to generate an emotional bond that still continues today. Two years after having finished the therapy we still help each other to reach out to this abrupt, complex and long path that we have had to experience…”

Along the different stages when overcoming a cancer, patients often come up with some common life-related questions. Psychological therapy helps to find good answers or better questions within this process. Here we collect some of these questions that usually appear in the different phases:

DIAGNÓSIS

• Why me?
• Is it sure that I do not have metastases? What if I had metastases and they have not noticed?
• Have I had the life that I wanted so far?
• Why does life give me this blow so hard now?
• How do I explain it to my love ones?
• Am I going to get out of this?
• I cannot die now; I still have many things to do.
• I feel on the edge of a precipice, I can fall at any moment.
• Life is not eternal … death knocks at my door.
• I do not want to make my loved ones suffer…

TREATMENTS

• Will I be able to resist this?
• It is sure it is working? What if, when it ends, it has not served anything?
• Will so much suffering be worthwhile?
• How can chemotherapy cure me when it seems to be poisoning me?
• How do I explain to my young children what is happening to me?
• I do not like my appearance, without hair, without breast, such swollen …

RETURN TO “NORMALITY”

• And now… what?
• Why am I so emotionally unstable? Why am I so fragile?
• Now that I’m supposed to be happy for having overcome the illness, it turns out that I feel terrible and I don’t know why …
• Everyone is happy because I’ve finished the oncological treatments … But I don’t feel happy!
• My backpack is too loaded … It had never weighed so much …
• The days go by and I can’t focus on nothing, I feel unable to working again …
• For me, everything is an uphill effort …
• Have I changed the things that I wanted in regards to cancer? Have I improved as a person?
• I want to be the best version of myself but I don’t get it, I don’t know where to start …
• I see my life in a different way, I want to change, prioritize those really important things.
• It is difficult for me looking to the future, I’m afraid, what if the disease comes back?
• In general, people around me have behaved very well, but I expected more from certain people … Some have failed me …
• The relationship with my body, with my partner, intimacy, sexuality … It is all altered.

Cancer patients explain us their emotional experiences along their cancer process. Psycho-oncologists provide their commentaries in the book Las emociones del cáncer, edited by Mayo Editions, sponsored by the SEOM_Sociedad Española de Oncología Médica. You can entirely read the book in this link.

Nextly, we show a small abstract of three patients’ explanations about the phases of their cancer process:

Diagnosis:

Mireia: I was very scared because it was a sudden change, from being a healthy person to a sick one. I remember the feeling stomach-shrinking and wanting to cry… I also remember that I began to wonder why this was happening to me, if I had been involved in the causes…

At first I didn’t talk this to anyone, I didn’t want anyone to suffer, and I had a serious insomnia… I resorted to Psychooncology and changed my point of view about the need to express my feelings…

Jaime: I felt so well that cancer wasn’t in my head; this word didn’t exist for me. It was not cancer what I had … It wasn’t after one month later that I realized that my illness, not so far, was mortal…

I shared with my wife and friends what was necessary, I never thought hiding anything. I maybe expected them to have some doubts, but they never had. I think it was because of my way of focusing the illness.

Treatments:

Gabriel: It is hard following such a rigid treatment, undergoing chemotherapy every week (…) so you accept what you feel, but it is very hard, at 44 years of age, feeling that your body escapes, that you don’t respond, that the body goes towards a different way from your mind. The extreme tiredness episodes are especially hard (…) having always had a very active life, it is very hard to have to stretch out all the afternoon because you are too much tired…

Mireia: I was very affected by the hair loss, it was hard. At first, I was used to hide and didn’t want to go out (…) I went to chemotherapy sessions every 15 days and for 12 of them I used to feel painful. It was very tired, and the impotence of not being able to control the pain leads to irritation, distress…

The life with cancer:

Gabriel: Obviously, I had life expectancies which I don’t have now. Nature has made me the final point; I had it before, but it was an ellipsis (…) I’m afraid of the future (…). Now I think that life is life and that it is going to last up to a moment, and when this moment arrives, life will stop… but it’s not easy to put a stop on it…

When someone asks me what’s wrong, I really do not know what to say … I’ve noticed some changes in social circles…

Mireia: I felt such a level of anxiety that I was very scared to die, and I started to look for information on the Internet (…) Then I realized that if you have doubts about the disease, you should not look for online information online, but asking to the physician (…) and not to stop asking him questions until you feel calm. Don’t be afraid of asking for psychological help, because sometimes you find yourself unable to control the disease…

I think cancer isn’t well-known neither accepted, yet. You feel others’ look which is not contemptuous, but of curiosity or wonder, especially among young people. Sometimes you need words of support rather than compassion, which make you feel worse…

Jaime: My daughters and my wife are my whole life (…) I feel that I won’t leave this life until I’ve brought up my little child…

The future

Gabriel:  I used to prioritize my work, as society leads us to do, but now I prioritize my personal relationships.

Mireia: The disease has given me a lot of freedom. It changed things of my life; a whole path that I had already done (…) Cancer has made me to realize that life is not bound by established rules (…) so you’ve got the freedom to change some things. (…) Somehow, cancer has given me a better quality of life, higher well-being, and the feel of enjoying everything…

Jaime: I’ve become aware that we are in this world only in passing (…) Now that I am fine I’ve realized that we must die, although it would be better if it takes place the day after tomorrow. When planning, I try not to do long-term plans (…) Now I’m ready (…) I understand that I have to leave…

A therapy group is a meeting of people who have and share something in common which unifies them all (cancer). They also share a desire of a common goal: the achievement of a greater emotional well-being.

Therapy groups online are similar to the presential therapy groups, but being performed from home. About 100 people have already performed them. The first pilot group we did in this project, Psychooncology Online, was an amazing experience, made up with 5 women survivors of breast cancer and a psycho-oncologist, Dr. Ochoa.

Once a week, at a fixed schedule, we met online for 80-90 minute sessions. The only technological requirement was a computer connected to the Internet and a webcam with a microphone (which could be lent by the hospital). We connected using a multi-videoconferencing platform called VITAM  https://prova.vitam.es:5001/, provided by the University of Girona. Participants put their name and, in “three clicks”, the session began. It was very easy.

In this type of group therapy, 12-week meetings are scheduled and designed to assimilate the disease and make the need changes to achieve a greater emotional well-being and quality of life. The last session is presential. It is worth knowing one to another, being able to touch each other and making real what started as a virtual experience. Subsequently, we see each other again in two other control sessions, one at 3 months and the other at 12 months after the end of the twelve therapy sessions.

Psycho-oncologists assess your psychological state at various times along therapy using questionnaires that help you to know how you were before, now, and how you want to be. Everything is adapted to your experience with the disease.

Psychological therapy in cancer patients may be necessary at different stages of the disease. Professionals, usually nurses or oncologists, who establish a closer relationship in the first moments with the patient, can make an initial assessment of the need for psychological care and make referral to specialists in Psychooncology when appropriate.

The most common emotional alterations in cancer patients are especially significant at that times called “crisis”, which are usually: when receiving the diagnosis and, above all, at the end of oncological treatments and returning to daily life.

Other critical situations to consider are: when the disease can not be eradicated and relapses occur, when there is no possibility of active treatment and/or the awareness of death closeness/imminence (end of life) appears.

The emotional impact of all these situations may require psychological treatment.

How to know if I need psychological treatment?

1. High emotional distress

The presence of emotional distress is the easiest criteria used in most countries to assess the possibility of receiving psychological treatment in people suffering from cancer. Specifically, several studies show that overcoming an “emotional distress” score of 5 on an emotional scale or thermometer can be a wake-up call for treatment. High emotional distress is the significant presence of illness-related anxiety or low mood. It is assessed by asking the patient how he would value his degree of emotional distress on an emotional scale or thermometer from 0 to 10, where 10 is the highest level of emotional distress and 0 the absence of emotional distress.

Emotional distress is an unspecific and simple measure that is useful for synthesize the cancer experience in its most difficult and unpleasant aspects. Although a high score may contribute to consider the possibility of requesting psychological help, it is important to also assess the personal and social strengths and resources. It is common to experience high emotional distress but also feeling capable of facing the disease. In these cases, psychological help may not be necessary. Psychological therapy, when specifically aims at reducing this emotional distress, focuses on providing emotional-management strategies, techniques or explanations which contribute to better regulate the emotional reactions from the disease.

2. The need of positive life changes

Extreme and adverse situations such as cancer tend to generate a deep vital questioning. This consists of rethinking and changing the way of seeing oneself, the others, the world, and life in general. Feeling that life has been threatened is usually the engine of this vital review that looks for higher levels of development, happiness and personal growth. Psychological treatment also facilitates the realization of these positive life changes, being another great motivation to ask for specialized help. In these cases people may also be experiencing emotional discomfort or not, but the goal is not only its control, but rather making significant life changes.

People have the inherent desire for growth, fulfillment and happiness rather than just seeking to avoid misery, worry or anxiety. Emotional or psychological distress is also engendered when growth is frustrated. Personal growth or positive life changes following cancer occur in many domains and areas: 1) Changing the way they see themselves (increased confidence, self-esteem, and empathy), 2) Changing the way they see the others (feeling them closer and having a greater ease of communication) and 3) in the philosophy of life or existential position (focusing on the present moment, greater appreciation for life, life priorities and values changes, increased interest in spiritual and existential issues, and the search for meaning and vital meaning).

Recently, psychological treatments have been created integrating both goals in cancer: reducing emotional distress and facilitating personal growth. Our research group called Positive Psychotherapy to this type of treatment that was designed in 2010.