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Personal Experience

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Diary of a pain

Language: English
Country: Italy
Typology: patients and relatives
On the side of the caregiver: The first moment is that of loss and impotence, it is as if the world is falling apart around you. In a moment you see thousands of images of your life and believe that everything is stopping, a still-frame that lasts only a moment, because then you realize right away that it can not end like that and, while the doctor tells you what is happening to you and how to deal with your case, making it unique and exclusive, you decide that is not the first time that something that seems irreparable happens to you and, with your usual enthusiasm, you decide that this obstacle too will be overcome. And, from that moment on, deep inside you, you start feeling a growing sense of strength to face the uncertainty of that insidious disease, about which you begin to ask yourself a thousand questions including why it has happened, what the causes are (only to find out that there is no inheritance, you were not a person at risk and so on). In my case, I was lucky enough to have next to me a woman whose strength and determination have helped me to find, through the rationality of a clear mind, the energy necessary to face that long path of suffering. You should try to live your life everyday as usual, in the same way, to ensure that the disease does not creep even in your daily activities; at least on the surface you should try to avoid thinking about it, about that termite that is tormenting you deep inside so as to prevent it from getting control of your life and your thoughts. Anna’s voice: My name is Anna, Anna X, and in 2007 I got breast cancer. I go back to when I was a child and I wanted to grasp light and time, in their immensity. I was a butterfly, but at that time it was only a dream. After a mammography screening, I was diagnosed with an aggressive, infiltrating cancer to both breasts. I thought I was weak, but I found out I had a force I did not know I had. I left the hospital. A huge burden on my heart and the concern that I had to say it to Robert, my husband and to my children. And to my sister, how could I give her a piece of news like that? How much pain was I going to cause to the people I loved most? My mother. A woman with a great heart and at the same time with a nervous, anxious and extremely sensitive nature. Deliberately, I did not say anything to my mother. I wanted to protect her. She lost her husband, my father, because of lung cancer. How could I tell her that her daughter had been diagnosed with cancer? But many times, as a daughter, I would have needed a word of comfort, strength and encouragement from her. Because, when children are ill, after all, they want their mom... It was March. A flock of swallows was dancing in the sky. I thought about my father. It was no longer spring. Does life end like that, without a warning sign? Does it end when we are still young? My children are young, will I see them growing up? Will I live enough to participate in their life? A mother does not accept death because she has her children to look after, a husband to continue to love and a family environment to protect. I'm thinking of my children, Chiara is fifteen years old and Andrea is thirteen. I do not want to worry them, they must not know about the severity of the disease. I have to protect them. I want them to continue to be calm. I started my struggle for life, even if my body hurt due to chemotherapy, surgery and chemotherapy again. I have learnt to know the shadows, the unpleasant moments in one’s life. I have fought these shadows and continue to fight them. They destroy your being, they dishearten you, they want to take you away forever. Everything tends to slip away from you. You fight and I have fought. But it has been tough. The evil, every kind of evil must be faced with courage and you must become tougher than it is, you must not give in. Then a spark, the Light. That light that turns you on, that takes you back to the sense of life, came back to remind me that I had to live not only for myself but for all those I loved, for all those who might benefit from my desire to continue to live. I still wanted to be a butterfly, that of my childhood, once again free. Cancer, you do not scare me. When they give you a piece of news like that, you feel the need to write down some things. I started taking notes because, since the time of diagnosis, my head has been crowded with a storm of thoughts and emotions (and, trust me, they came in large numbers) were about to sweep me away. So I wanted to set some milestones for myself, to understand how I should behave. My thoughts and my emotions put in writing have allowed me, in some way, to distance myself from the illness and to see it with greater awareness. To react to negative events, you always need to reconstruct your own story. My character has also helped me: I am very sweet, it is true, sensitive, passionate but also very strong, decisive and determined. I discovered that all this strength, determination and a great deal of courage as well would help me to put up with the blow of the disease. The disease comes as an event that does not make any sense. Moreover, a woman does not accept an intervention of mastectomy because she has a sense of womanhood to respect, of sexuality to contemplate and of dignity to flaunt. Suffering questions the very sense of life and its meaning. It creates an existential break; in other words, the balance achieved is challenged and you are put in front of the uncertainty of the future. That is why I have benefited from writing. From the first moment, I decided that I would call my illness with its name: breast cancer. And that I would pronounce it while looking the other in his eyes. Cancer, a word that scares people but, if you avoid pronouncing it, this does not reduce the severity of the disease. Then a spark, the Light. That light that turns you on, that takes you back to the sense of life, came back to remind me that I had to live not only for myself, but for all those I loved, for all those which might benefit from my desire to continue to live. I still wanted to be a butterfly again, that of my childhood, once again free. You start to walk on a completely unknown piece of land. No one is ever prepared for a path like this, nor are those who are beside you, your husband, your children, your family and your friends. And yet we had to learn something already in the first few minutes, in the early hours of this adventure: attitude and words will be fundamental. The way in which he, my husband, accepted my communication, my being quiet, my being strong, gave me a hint on how I would have to behave from then on. I resolutely decided not to allow the disease to turn me, not even for a day, into a sad mother and wife, defeated and isolated. I had to preserve the serenity of my children and my husband. "I promise you I will fight, I will face this battle without hesitation to achieve victory, I will fight with all my energy for you and for our children" - I told him - "And also for you", he answered me. Of course. Our mutual concern - and God knows how much I wanted to spare him all this pain - is the foundation of the oath we were making. We hugged each other: the pact that we have closed between us is unbreakable. Thoughts, feelings, doubts and fears. Sentiments. The disease is becoming a habitual stage. I am so well rooted in my reality that I do not think of making assumptions or programs any more. And the concept of time returns, as a vital space within which minutes, hours, days pass by. Since I entered this new dimension, I have always continued to go to work, paying attention to my appearance; well dressed, always with a bit of make-up put on and with my hair, sorry, my wig, in order. I must also say that, after treatment, I have never been ill, just a bit of nausea and tiredness - how many positive thoughts I have addressed to my nectar (chemo) - and this positive attitude has helped me a lot. I can use the concept of time to my taste, always being aware of playing with pieces of my life. At times, this new dimension surprises me, overshadows me, reassures me, enriches me, or it makes me rebel and sometimes, to avoid shouting, I cry. Tears, anger, fear, they are all feelings that I have tried not to show to my children and my husband; I could not show them because I knew that nobody, except me, could give them the strength to go forward. I am very patient with my body which is so tired and, in various ways, in need of countless small precautions that it has never received before. I feel they are like investments in my future healing. Because I believe in it. I get closer to the window, look up to the sky, and I feel a ray of sunshine on my face. Perhaps, it is possible to return to live. You just have to change your point of view, look upwards and not downwards, expand the line of the horizon and tune with humanity, with its joys and sufferings. Because everything has a meaning, a reason. Even the pain may help us to understand our mistakes, to allow us to straighten out the shooting. I had my silicone breast implanted, as a false copyright on a faded canvas, they told me: "Now go, be satisfied with this artifice, after all it should be enough for you to pretend you are still in one piece". I left the hospital, and everybody said: "You see, nothing bad has happened to you, you have a beautiful dress, an elegant figure and you move along smiling". Mourning for myself in my heart, I moved along with dignity wearing that new dress, my figure “in one piece” and that smile that looked more like a grimace. It was a time of long chills and docile bandages, during which I tried to gradually heal my long wound, as if it were my entire life, I went on ignoring dissonances, skipping over turbulence: how many prohibitions in stop, poised on the brink of a restless fate… My identity was coming back to me, in a garment of paper, and as I flipped it over, in casting of ink, the project of my life was winning over the sharp scalpel of a judgment. The operation has been a success, but I am not referring to the silicone implant, but to the transplantation of a hope that has channelled into my long twisted scar, to trap an "in spite of everything", perhaps a rainbow, that I created on my own with the sky blending towards me! I never asked myself whether that rainbow was false or true, sacred or blasphemous, I wore it like a second skin or as a warm stole on my shoulders. Time had passed, and little by little, unconsciously, day after day, I went out from the pit in which I had fallen. So that morning similar to many others, my thoughts were flowing like the wind, when I happened to take the first step toward the entrance of the shop. They were soft, with light, warm, comfortable, green strings. Green, the colour of hope. While going out of the shop, I was holding that little treasure in my hands and I knew that in that moment I was holding tight the symbol of my belief in life. While I was coming back home, the happiness I felt was due to what I had won, the prospect of a future, the conviction that I could still walk on the path of life. I smiled with my eyes veiled and I thought that, tank to those green shoes, I would have still time to teach my children to love life even more and to learn to listen to the voice of the wind. There are two ways of living one’s life. One is not to believe in miracles. The other is to believe that everything we live is a miracle.

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