An interview with Francesca Settimi
illustrations by

The strength 
of sharing

Francesca Settimi is a woman who has fought a long battle against disease.

In March 2007, she was diagnosed with lobular breast cancer, and after BRCA 1 and 2 genetic testing, for which she came up negative, in 2012 she was told that she carried a very rare genetic mutation after a CDH1 test. CDH1 is a tumour suppressor gene that encodes E-cadherin, a protein that is fundamental for cell integrity and adhesion. A mutation in this gene can be passed from father to child, and is responsible for hereditary diffuse gastric cancer, or HDGC, and correlates with lobular breast cancer.

The tumour cells hyperproliferate under the stomach lining and are therefore invisible to normal endoscopies. The tumour is also indolent until it reaches an advanced stage.
This is why it is very important to spread information for all women with lobular breast cancer who have cases of hereditary diffuse gastric cancer in their family, and this is the aim of the book Me, Guenda and the Mad Gene that features Francesca as the protagonist.

From that test, Francesca underwent 27 surgeries to fight a disease that proved to be unpredictable. An exhausting fight that Francesca has never given up on, showing extraordinary strength and taking drastic decisions with courage. An example of hope and love for life, whatever it may be, for all those fighting disease, who need to tell their stories and be listened to, encased in the solitude of their journeys.

Francesca, what has been your main source of strength and energy in the most difficult moments?

"Living in a house at the edge of the woods and being passionate about flowers and vegetables has taught me to be in contact with the natural cycles of life and death; and also to be patient and accept that things don't always go how we expect them to. Nature is a great teacher for life.
I always say that the place where I live is part of my therapy for survival.

Close relationships have been my other great source of energy: first and foremost my husband, co-protagonist in my life, and my friends, who continue to support me all the time, in any way possible - even from afar. Without them, it would have been much more difficult to stay anchored to life.

The contribution of two Patient Associations has been fundamental: The Palinuro Association and Vivere senza stomaco si può. They have helped me to accept that our bodies, despite the changes imposed by surgery, can still be managed and accepted. These associations offer exceptional support for patients to share the practical and psychological problems that must be faced along the journey, especially when we are overwhelmed by loneliness and desperation."

Did you know of the existence of this disease before becoming victim to it?

"No. It was 2012 when I came back positive for the CDH1 test and I decided to have a gastrectomy, based on one scientific study in New Zealand in 2010, which was carried out on a hundred people with the same mutation as me. Very little was known about it."

Food plays a central role in the story of Francesca and her illness: food cooked and food eaten. After her many surgeries, she rediscovered food as a source of healing and joy. She no longer has a stomach, but cooking has in any case become her passion and her most important medicine. She has attended the Le Cordon Bleu School in Paris, and become a pastry chef. She has founded the Cook on the Lakes School in Colazza, on Lake Maggiore, where she teaches and shares her passion for food: a way to find strength, to explore new flavours and share experiences.

In your opinion, what is the primary function of cuisine, of cooking, and what does it mean to teach people how to cook and eat well?

"I have always loved cooking and eating well; travel has always been an opportunity to cultivate this passion, but I would never have guessed that it would become my new profession after my gastrectomy. Without a stomach, food becomes a fixation throughout recovery and afterwards. Either you eat or you die. I lost 30kg in a short space of time. Without a stomach, you lose all interest in food, and it actually makes you sick.

Then you start with a little piece of bread, and bit by bit you rebuild your food habits. You discover that everything has changed: textures and flavours. But you try to pack that small amount you manage to swallow with as many calories and as much protein as possible. The school has helped me to get back on my feet and make peace with this new way of eating. And that's not all: I have been able to share all this with the people I have hosted, coming from all over the world; a way to travel again, without travelling."

Francesca Settimi and Lucia Ravera were 10 years old when they made friends. Today, Lucia is a journalist and writer. Guenda is the affectionate nickname they have given each other. Lucia's support for Francesca has been vital, and the idea of writing a book together, entitled Me, Guenda and the Mad Gene, came out of their desire to tell Francesca's story and recount her fight against the disease. Lucia has written the book with sensitivity and love, offering a testament of trust, faith and hope for everyone facing the disease.

Why the nickname Guenda?

"Guenda comes from Lucia's attempt to find a name for a line of shower organisers that I designed when I was still an architect. We liked Guenda: it could transform into Guendalina, and therefore 'GuendaLine'. The producers chose something else, but Lucia and I used it for each other from then on. In the book, however, Guenda is Lucia, and I am "Me" and the "Mad Gene"."

Was telling your story in the book a way to share and exorcise everything, or a way to prevent disease and pay attention to the value of life?

"For me, the book was a culmination. Seeing my own life narrated by another person, where all the pieces suddenly find their place and their meaning, has been cathartic; I often caught myself saying 'Wow, that's exactly what I did; I acted by the book, without having read one'. I was able to see myself from another perspective: me, my psychological dynamics, my skills and my mistakes, the standard practices and somersaults performed by medicine. Now I could share all this with others. And that made everything make sense; the new me, and what had happened. A new beginning, a testimony and a testament; words and a listening ear for anyone who, disorientated and momentarily lost, needs it: patients, friends and family members. An army of powerless people to comfort. To instill with new strength. The strength of understanding and solidarity. Because being surrounded by people who support us and encourage us can give us the strength necessary to face challenges and find new ways to live life fully, with joy."

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N° 13


What material are the "links" that connect one human to another made of?
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