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In health and illness: narratives of people with prostate cancer and their lovers

Old age is not only the biological fate, but also the historical and cultural one. When the time was cyclical and every year the rhythm of the seasons repeated itself, those who had seen more knew more. For this reason “to know is to remember”, as Plato notes in the Menone, and the old man, in the accumulation of his memory, was rich in knowledge. Today, with the progressive conception of time, no longer cyclical in its repetition, but an arrow thrown into a goalless future, old age is no longer a repository of knowledge, but a delay, inadequacy, anxiety for novelties that can no longer be controlled in their rapid and troubling succession.

Umberto Galimberti in – When being old meant wisdom

In a recent ISTUD narrative medicine project entitled “Vivere, assistere e curare le persone con carcinoma prostatico in fase metastatica” the experiences of people diagnosed with metastatic prostatic carcinoma and their relatives and formal caregivers were investigated. The results of the study were discussed at important scientific congresses such as the XIX Congresso AIOM, held on 29 October 2017, and the XXVII National Congress of Società Italiana di Urologia Oncologica (SIUrO), held on 20 April 2017 and resumed by the headlines including  Repubblica.

The project aimed to retrace the journey in the care of people with this pathology, with particular attention to its physical, psychological, social and economic impact on the entire family patient nucleus. Despite the fact that the average age of diagnosis is progressively decreasing, thanks above all to the screening campaigns that lead to an increasingly earlier diagnosis of this type of tumor, about 70% of elderly men over 80 years of age have some prostate disease.

Paradoxically, in a period that should finally be more serene, free of commitments, with a lot of free time at disposal, a diagnosis of cancer may seem an obstacle that precludes the achievement of the objectives of life that the person had set himself. Once an active worker, many people in old age still want to devote themselves to the activities, hobbies and passions that make you feel good and that allow you to overcome even the most impacting consequences of the disease such as continuous tiredness and severe bone pain.

From the study these are some of the testimonies that patients have given us, on the activities that allow them to better address the obstacles that the disease imposes:

“I play a lot with my grandchildren, they make a mess at home. I take them to the theatre and the cinema because they want to see films”; “we have two grandchildren who make us forget everything”; “I have a small garden and I’ve always done everything”, “I have a small garden. I take them to the theatre and the cinema because they want to see the films”; “we have two grandchildren who make us forget everything”; “I have a small garden and I’ve always done everything”, “I have a garden with fruit trees, the vineyards made the wine and, despite everything I tried to do it, and this year I would like to resume some things, certainly I can’t do them.”; “It makes me feel good at work”, “When I work I feel good”, “I work close to young people, with the thoughts of young people with the goals of young people and it has always been a pleasure”; “I like reading, playing, listening to music, it makes me feel good, I used to dance before. I love cinema, so much to see the films, I pay Sky, even the football matches. I like going to the beach, going on trips.”

In many ways we can say that the full realization of a man can be fully achieved precisely in the older age range, at that stage of life when you are able to look back to the past, to past years, the balance of a life, what is done is done … but perhaps an even broader and more complete realization of their entire existence is to be sought in love and couple life.

From the collected narratives it is evident a strong impact of the disease on the deepest and most intimate aspects of the couple’s life, too often initially “ignored” by patients because omitted or not dealt with clearly and effectively during the medical examination. However, this is not just an underestimation on the part of the sick person, but a real unconsciousness, since the patient is often kept in ignorance of the consequences of the therapies, of what the disease would have involved. Significantly, there is no direct correlation between the average age of those who are still in a phase of “finding solutions to lost sexuality” and those who have passively accepted the consequences of disease and treatment on sexuality (average age of 75 years), finding a new dimension of intimacy with their life partner. Therefore, an aspect that affects not only the lives of younger men but also of people beyond their age.

“I was very angry because they did not point out the consequences on sexuality. They told me <<let’s make two little punctures and the sexual consequences had passed>>> and instead this has upset my life”; “My sexual intimacy has changed but I’m getting treated, I finish the cycle in February/March and then maybe I go back to the andrologist”.

On the contrary, from the narrations the women, the companions who live and care for the person with advanced prostate cancer showed a positive and proactive spirit, they described us a sweeter and more affectionate world, a surely very different dimension of living intimacy, to which often men are not used. It can be said that, contrary to what happens to many conditions that we have had the opportunity to deepen in past ISTUD projects, in the narrative investigation of this type of tumor really even the family is deeply affected, and is therefore particularly involved in the process of coping with the patient.

Therefore, the careful evaluation of the consequences of care on sexuality, the impact it can have on couple life, the active listening of the life prospects of the person but also of his family, are aspects that should always be taken into account by a multidisciplinary team to share with the patient and his partner what is the most appropriate way to pursue.

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Written by

Researcher at Healthcare Area of ISTUD Foundation. Master degree in Industrial Biotechnology at University of Milano-Bicocca, Post-graduate ‘Scienziati in Azienda’ at ISTUD Foundation. Expert in Medical Writing, especially in areas as the qualitative research and Narrative Medicine. She contributes to research and educational projects with the aim of improving the quality of life and quality of care of patients with chronicle or genetic diseases.

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