Living with sarcoma, Natalia’s story in poetic verse

“…Come all, children of sarcoma, let’s occupy these three centimeters which justify that someone considers us heroes and others see us as vanquished. In the amputated land, where everyone has given up on sowing, black flowers appear that dazzle with beauty”. They are some verses of the poem ‘Sons of sarcoma’ written by Natalia Fernandez Diaz-Cabal, professor of Linguistics, writer, poet from the Autonomous University of Barcelona and the University of Shanghai who recently participated in an event for the presentation of the awareness and information campaign ‘Patients, experts and institutions together in the challenge to sarcomas’ promoted and organized by Paola Gonzato Foundation-ETS Sarcoma Network to which over 20 patient organizations – Associations and Federations – national and international adhere. And given that July is International Sarcoma Awareness Month, a ‘family’ of rare tumors that can affect any age and which is still little talked about, Natalia he agreed to tell Oncoline about his experience.

An ultra-rare sarcoma

Sarcoma is a rare type of tumor, but the one that struck the 45-year-old poet is ultra-rare: low-grade fibromyxoid sarcoma (it’s called that, but it’s not necessarily low-grade). “I was misdiagnosed in 2012, even though I was told then that I had something rare, but benign like aggressive fibromatosis,” Natalia begins. “In 2014 I had a tumor again which was diagnosed as a sarcoma and then a new biopsy of the biological material from 2012 was done, which confirmed that it too was already a sarcoma. This means that in 2014 I had a relapse. Three months later, in early 2015, I had another one, with tumor extension.”

The surgeries and the renunciation of China

The poet lives in Barcelona, ​​Spain. Right at the time of the diagnosis, she had signed a contract in China, where she had obtained a professorship at one of their leading universities. Unfortunately, subsequent relapses of her sarcoma prevented her from carrying out that project. In fact, Natalia underwent several operations, but the last one was the most radical: “Since the sarcoma was located in the left breast – she explains – it was decided to perform a radical mastectomy, in addition to amputating all the pectoral muscles and removing Skin. Since then, I have gone from having a check every two months to the current yearly check”. A renunciation of the contract in China that was difficult to accept: “On the other hand, I was able to devote much more time to writing. I am a university professor and, paradoxically, one of my specialties is the metaphors that patients create/recreate in their memories and narratives. I also got my doctorate in linguistics and philosophy of science,” she says proudly.

Accepting rarity without feeling like a freak

But what does it mean to live with sarcoma? “It’s like having a dual nature or dual nationality. The first impact is cancer, having cancer, and after the diagnosis you feel the need to understand what all this means. The second impact is related to the rarity of this tumor, it’s like having something strange. It was easier for me to accept that I had cancer, but more difficult to accept that I had an infrequent disease. After having undergone several operations, I understood at a certain point that I myself had become my sarcoma for others, I was identified by the doctors not with my name and surname but with the sarcoma”. Natalia had to work on these aspects and on her perception of herself: “All of this struck me very much and for the first time I felt like a strange animal in a cage, under observation. But I’m not my sarcoma, I have my own story. Only after making contact with patient associations did I understand that I was not alone, but up to that moment I felt exposed to the gaze and judgment of a public who looked at me as if I were an extinct animal, a freak show”.

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Natalia’s books and the link with Italy

In the post-operative period after the mastectomy, the poet began writing the essay ‘Polyphemus and the bearded woman’ in which, starting from her experience as a linguist, she tries to explain what it means to live with a rare tumor. “The freedom of essay writing – explains Natalia – allowed me to reconstruct the social perception of sarcoma, the connotations that words have (their etymological and historical weight). It was a media success: for the first time there was talk of sarcoma in my country, a debate was generated starting from reflections on communication, language and personal experience”. Shortly before, in 2016, you had published, with the Sardinian publishing house Es Cruculeus, the book ‘Sons of sarcoma’, in a bilingual edition (Italian and Spanish), which is also ‘compulsory’ reading every year at the Libramare Festival held simultaneously in Cagliari. “My verses – she explains – describe the radical and sudden transformation of life due to sarcoma and what all this meant to me. Especially at the beginning, I really wanted to write and my first reflections were on mutilations; I had an urgency to understand what is lost and what is gained in this process of mutilation”.

The importance of language

Language becomes important when dealing with an illness. “The others – continues Natalia gently – become judges of your life, they want to decide for you, impose their opinion, they tell you what you must and must not do. The same metaphors referring to cancer (war, battle, losing, winning) are questioned by me. I don’t think that a disease is a war, I don’t think that you lose a war if you die or that you win a war because you survive. I want to express an immense thanks to Ornella Gonzato, creator of the Paola Gonzato Foundation, for her friendship, her sensitivity and her inexhaustible spirit for new and singular initiatives. Illness is a transnational issue. Luckily, so are friendship and affection”.

The awareness campaign

#we are not sarcomas is the official hashtag of the 2023 campaign, which will be developed on social networks throughout July and which includes the launch of three very short videos, the result of sharing the awareness campaign, an international award from SPAGN (Global Network of Patients with Sarcoma), infographics on the disease and on specialist centres. Patients with sarcoma suffer not only from the disease but also from still sub-optimal care management, which directly impacts their lives, both in terms of survival probability and quality, as well as affecting health and social costs. In this context, patient organizations play a crucial role because they constitute a “bridge” between the needs of patients and clinicians, researchers and institutions. “Patient organizations can speed up the process, trying to stimulate and co-design, together with experts and institutions, a better system, capable of giving answers to those who experience oncological disease in their own life, or that of a loved one. rare and complex, like a sarcoma”, declares Ornella Gonzato, Founder and president of the Paola Gonzato Rete Sarcoma ETS Foundation, molecular biologist and university professor in the ‘life science’ regulatory area. “Sarcomas have no age; this requires close collaboration between the pediatric and adult areas without neglecting adolescents (young adults (AYA), whose needs are still too underestimated. They have no screening programmes, there is no prevention; for this reason it is necessary to pay close attention to possible symptoms and signs and, in the event of their unjustified persistence, contact the doctors to be directed, if necessary, immediately to specialist centers within dedicated networks”.

The national investigation

During the event, the first national survey on “Living with sarcoma in Italy” was also presented, born with the aim of gathering the point of view and experience of patients with sarcoma and caregivers. The focus is not the pathology but who is affected by it. “Photographing” the Italian reality in order to better understand the needs and expectations of those who live – or are close to those who live – such complex disease paths is the first step to be able to develop concrete proposals for improvement at different levels, based on the evidence of the data collected. Each theme explored could in fact generate different utilities. The research was designed jointly by the Paola Gonzato Foundation and AstraRicerche, which operationally supervised its implementation and development.