My story, like all of ours, is “unique.” I have always been labelled as “health-conscious,” sometimes with gentle irony and, at other times, with a touch of sarcasm.

In April 2008, I experienced a stressful period at work. After a year of frequent visits to my family doctor to complain about various gastrointestinal issues, an ultrasound was finally prescribed. The ultrasound revealed a lymph node beneath my stomach measuring 2.7 cm. I was told it was normal, as lymph nodes serve as a defence in case of inflammation, and my doctor even touched his throat as an example.

However, I didn’t feel at ease and consulted a gastroenterologist who recommended a gastroscopy and eradicating the H. pylori bacteria I had been hosting for about three years. During the gastroscopy, an adenocarcinoma was discovered, which led to a total gastrectomy and the removal of 4+2 lymph nodes that were cancerous. Before beginning chemotherapy, my excellent oncologist prescribed a PET scan, which revealed two additional affected lymph nodes. Fortunately, these nodes were no longer present by the end of the gruelling chemotherapy cycle. My histological classification was PT1N1 G3 (according to the old classification). After that, I began the process of understanding my illness and what had happened to me.

This period was filled with pain, fear, a sense of helplessness, and loneliness despite having close family and friends. There is no need to explain the necessity of giving meaning to the daily pain, daily fear, and the daily struggle of those days. The urgent need to share this “journey” with others who are on a similar path was compelling.

When I couldn’t find any information related to my condition, my initial thought was that I might not survive for long. Then I thought the causes could be related to other factors: a lower percentage of affected individuals, a greater reluctance to make a disease public that hinders social life, and the shame of admitting to being ill.

Ours is a world that rewards physical fitness and doesn’t forgive illness. Relationships between people are often cemented through food, which unites and brings people together. It is a shared pleasure and should not be synonymous with pain, as it is for me. Even today, I sometimes eat tasteless food, trying to eat a lot, mainly because I fear losing more weight. I still need to shake off the dogma that thinness equals illness and illness equals shame.

When I found out I had stomach cancer, I consulted a dear family friend who is a doctor. During the agonising first hours, I felt him suggesting: Claudia, don’t tell anyone, people will see you “in a casket.” I realised that even the dearest friends change your name using a diminutive after such an illness, taking away the completeness you had “before.” The TIME I initially experienced was filled with fear: the fear of letting go of life, an eternal limbo awaiting the next check-up.

A life suspended between one check-up and the next. And it shouldn’t be this way. Generally, those who are healthy and close to the sick try to downplay the illness, unfortunately intensifying our anger, pain, and helplessness. I founded the Stomach Cancer group Vivere Senza Stomach, “Living without a stomach is possible,” and NEL GRUPPO, composed of people who, like me, have experienced this surgery and who seek answers and who like me are willing to be “part of a whole” for ourselves and others. People who are savouring LIFE again know they have been given another chance. Gradually, I began to look beyond the individual day.

I started the TIMENNBLOG and began to process my illness. Perhaps if the group had existed from the onset of my illness, I wouldn’t have experienced what I did in the months following the surgery. I had much difficulty eating and often vomited due to pain like colic. On several occasions, I told those around me about these pains, and they all responded that I had to try. Finally, after two years from the surgery, I met my guardian angel, an excellent gastroenterologist who understood the problem and began dilations. Since then, I’ve had nine dilations. Unfortunately, during the last one, they told me that my anastomosis was too rigid and nothing more could be done: I have a lumen of 1 cm… Yes, 1 cm. Dilations are only effective if performed in the first year; no one thought to propose them to me then. After 13 and a half years, I still struggle to eat, and I’m mainly on a semi-liquid diet. So, when someone going through a similar ordeal says they have trouble eating, my advice is to try because it is true that the body needs to perform this exercise, but if the discomfort persists… well, you must evaluate the lumen.

This is where sharing serves a purpose: to provide our own experience. Hence, the idea of becoming an association to truly support those who live with this normal diversity. An association that gave meaning to what happened to me. To what happens to gastrectomized individuals.

With difficulty, but also with joy, together we can make healthcare professionals reflect on the emptiness that greets us after surgery, together we can make those responsible reflect on employment issues related to the countless metabolic problems that accompany us, together we can make governments reflect on our true state of severity. As an association, we spotlight the problems that emerge in the Facebook group, which would otherwise remain a “simple” manifestation of discomfort. By intersecting the beating heart of the Facebook group/forum with the search for a solution that the Association seeks to provide to these problems, I truly gave meaning to my illness.