Ask for it when you need it and if you are disappointed ask again. Support, when you are sick or caring for a sick person, is essential. Finding someone willing to listen to our story, to help us with advice, to support us in visits can make the journey of those who suffer much less tiring and arduous. The latest podcast of the series “Beyond the skin diary – Stories in listening” is dedicated to support, which talks about the path that patients with melanoma make from diagnosis to therapy. The project is part of the awareness campaign “Beyond the skin”, promoted by Novartis in collaboration with the Italian Association of Melanoma Patients (AIMa.Me.), Melanoma Italia Onlus (MiO), Associazione Pazienti Italia Melanoma (APAiM), Emme Rouge Onlus .
“What I read on the internet the first few days after the diagnosis did not help me at all, quite the contrary. I therefore wanted to share my story, the hope that derives from it and the right information with others: this is how the association was born. To help patients and caregivers with information and awareness, also thanks to a Facebook group where we give daily support on how to face the different stages of the journey ”, Monica Forchetta, president of APAiM, tells in the podcast.
“To face our fears we need to know each other, to go in depth. It is a journey that can be done together, and that is what we do with our association: we fight fear and live the best time, which is always precious. And so we help the drug work better. The drug helps, but you must help the drug ”, underlines Giovanna Niero, president of AIMa.Me.
Associations help patients but also caregivers, a very important element in the care relationship. In many cases they are the ones who guarantee the communication bridge between doctor and patient and provide correct information to those who are confronted with melanoma for the first time. “One of the most difficult things at the beginning of the treatment path is to choose who to trust, and in this the associations can give valuable information”, says Chiara Puri Purini, vice president of MiO. “Once a decision is made, a relationship is established between doctor, patient and caregiver. In fact, it is the latter that when the patient is depressed or tired enters the relationship with his strength and lucidity “.
“Associations are halfway between patients and doctors, a bridge”, says Luisa Anna Scotti, president of Emme Rouge onlus. “And they don’t just do it during illness, they can do it afterwards as well. When I was treating my daughter Mara for melanoma, I didn’t feel any need for help, but when she died, unfortunately, yes. Caregivers help but need to be helped as well. If my daughter has lived well the last days of her life it is because my hope has never failed. After his death, however, I had a breakdown and I needed help ”. Hope, fear, support, help, comfort. The diary of melanoma written by “Beyond the skin” contains all these words and many more, written on the pages by patients, doctors, psychologists, caregivers. If you want to listen to all the episodes you can find them here.
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