Not yet another handbook, not a handbook, not another list of advice for patients on how they should live their condition. This time it’s the other way around: it’s the patients who speak. Those who live with cancer, who do not heal, but who “keep the tumor at bay”. Drug after drug, exam after exam, day after day, sometimes year after year. Today they share their thoughts. Very reasoned notes. Better, some notes. Here they are.
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The “Notes of life”
1. Don’t call us warriors, just women who face pain
“The ability to react to situations does not give me the label of ‘fighter’ or ‘soldier’. You find strength in yourself or you look for it in people, in the association, in the doctor… It is not a question of heroism, but of responding to a situation ”.
2. Illness changes your life, but at the same time gives you the strength to face it
“The diagnosis has upset me, but the disease has made me discover a strength that I did not think I had and that helped me to face this change”.
3. Time is like a cure: the more it increases, the more hope grows in us
“Time is really important to us. When I don’t feel great, my thoughts turn to tomorrow, in the hope that I will feel better ”.
4. We need people who stimulate us to live our present
“In a situation like this you realize you are mortal. In this way you are able to live the present more intensely, perhaps spending more time with your child ”.
5. There is no right way to accept the disease: everyone does it as best they can
“Acceptance does not mean resignation. It is the awareness of reality, and to accept it you must have good information, which makes you understand all the aspects of the disease as a whole ”.
6. Keep doing what you like. If needed, with the help of professionals
“My doctors make me do what I like, because what I like can only do me good”.
7. Intimacy goes beyond the body: even with our scars, we are women
“For many women it is taboo. Undressing and knowing that you are no longer what you used to be is really difficult. It was very difficult for me to re-establish intimacy with my husband. Then, with the right care, I succeeded, but it is absolutely not easy ”.
8. Talking about sexuality is good: not as an act, but as a desire to find oneself
“Women see scars on their bodies and dismiss the word intimacy. Instead, I think that intimacy is good in the course of the disease and it is good to talk about it to help women understand that life as a couple is not over ”.
9. Sometimes silence is more supportive than constantly asking “how are you”
“It is not helpful for the patient to have a person repeat the same things to you over and over again. Our help is also to be at peace with ourselves ”.
10. Sharing the burden of illness helps you live your time better
“Only if we really say how we feel and the other understands the situation correctly can help be given. Dialogue is what needs to be helped ”.
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Taking care of the psychological-emotional aspect
These ten reflections were collected under the name of “Notes of life” within the multi-year project “It’s time for life”, a campaign promoted by Novartis Italia in collaboration with Salute Donna Onlus to support and inform women with breast cancer. metastatic. The “notes” were inspired by the testimonies of the patients and volunteers of the association that emerged during the Life Academya cycle of conversations curated by the psychotherapist Stefania Andreolito offer online spaces to open up and deal with all aspects of the disease.
The search for harmony
“The word ‘notes’ refers to the idea of harmony, possible even when you don’t hear well – explains the expert -. They are their notes. We assume that if there is something to learn here, the roles must be reversed ”. Andreoli focuses on note number 9: “We had a meeting on caregiving, where the theme of silence emerged, which is profoundly communicative – she says – she. There are very clear silences. So why do we fear it? Because sometimes we misunderstand it and think it is empty, inability to talk to each other, unfamiliarity. The truth is that it reveals our fears. When we have to suffer we suffer, when we are frightened we are afraid, and silence can be supportive: it is useless to try to fill it with empty words ”. The psychotherapist remembers how much the emotional and psychological aspect can make a profound difference for the quality of life. “Because she – she stresses – in relationships we ‘heal’: not with respect to the diagnosis, but with respect to the possibility of being relieved, of weaving meaningful bonds, of choosing the words to tell and tell ourselves”.
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“Don’t call us warriors”
On 13 October, a day dedicated to raising awareness on metastatic cancer, the last meeting of the Life Academy will go online, reaching over 56,000 users on its Facebook and Instagram channels. “These women seek the sharing of their pain, which is something very different from pietism – she says Anna Maria Mancuso, president of Salute Donna Onlus -. The pain of being diagnosed with metastatic breast cancer splits life and feelings. Confronting it doesn’t make patients warriors who never give up. Ups and downs are always there. But facing the pain with them means dissolving it ”.
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A change that began 10 years ago
Until a few years ago, women with metastatic breast cancer were not spoken of. Median survival at the time was just 2 years, while today it is over 5 years. “It may seem little but it is not: it means that half of the patients live more than five years. And from clinical studies we still don’t even know how long, because the response to new drugs persists for a good share of them – explains a Breast Health Michelino De Laurentiis, director of the Department of Breast and Thoraco-Pulmonary Oncology of the National Cancer Institute Irccs Foundation ‘G. Pascale ‘of Naples -. Now, in fact, we can make use of molecules belonging to the category of cyclin inhibitors that are able to double the survival compared to previous therapies and we are thus moving towards an important goal, which we call the chronicization of the advanced stage. The revolution began about 10 years ago and perhaps in 10-20 years we could talk about healing ”.
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The challenge: identifying the problem from the diagnosis
One of the challenges of research is identifying, right from diagnosis, the patients who are most likely to respond to a particular drug and who, on the other hand, should be treated differently. Among the studies being conducted in Italy is BioItaLEE, coordinated by De Laurentiis. He points out: “287 women participate in the study, all treated with ribociclib, one of the new inhibitors of cyclin-dependent CDK 4/6 kinases, and letrozole. Our goal is to identify markers in the blood that indicate the most sensitive patients to this drug. The first results allowed us to distinguish three groups, including a highly responsive one, that is, with a greater possibility of disease control than that shown by clinical studies on the drug “.
“At the opposite extreme there are those who progress after a very short time – concludes the oncologist -. Now we want to go into more detail: identify which, among the mutations that arise with resistance, are responsible for it. To understand if we can use other drugs already available or how to develop new ones “.