Would you like to introduce yourself and tell about your professional biography and your contribution to the ANDOS (National Association of Breast Operated Women) association in Tolmezzo?
Nursing has been my vocation. I worked initially within a surgical ward, then in a cancer day hospital where I became area coordinator. In 1986, in Tolmezzo, the ANDOS committee was born, in the wake of other similar committees that were springing up in the region at the same time, thanks to an intuition of the then chief of surgery, the support of his other collaborators (including myself, among the founding members) and the testimony of a young woman who had been operated on for breast cancer. There was a realization that for successful rehabilitation of an operated woman something more was needed than the care that the National Health Service offered.
The catchment area of the committee over the years has grown, along with the number of projects and services, and we have become a point of reference for all women in Upper Friuli.
Tolmezzo is a small town nestled in the mountains, it is difficult to emerge and be heard for the town, for the inhabitants and for the associations that are born in this area. I ask her how the ANDOS committee came into being, what values it carries, and what goals and battles it strives to achieve and support.
Tolmezzo is the municipality that serves as the lead and reference point for the territory of Carnia, in which three valleys dotted with small mountain communities converge. So from the very beginning, we had to face a first major problem, which was how to reach as many women as possible. One effective solution we found, for example, is to create a strong correspondence with the members because it allows us to maintain contact with them and to put in place an effective “word of mouth” for events and projects that the committee intends to spread. ANDOS was born with two very clear and defined goals: to be able to raise awareness in the community about the importance of prevention, including supporting regional mammography screening, and to give support to the operated.
In fact, within the committee, we offer group physical activities, recreational activities, workshops, outings, and much more, and with our funds, we are able to give financial support to the surgeries for all those expenses that are not covered by the National Health Service, such as, for example, the purchase of wigs, travel expenses for radiotherapy sessions at the nearest referral center which is Udine, purchase of specific corsetry.
Having trusting relationships with women who have been diagnosed with breast cancer requires familiarity and strength, and engaging in awareness campaigns requires just as much. How do you manage to create such connections? Are there any examples of experiences you would like to recount?
Figuring out how to relate is not easy; it is necessary to educate, inform oneself and accumulate different experiences, keeping in mind that each person is different and unique.
Some women who have undergone breast cancer surgery (either in the post-surgery period or in the post-diagnosis period) may show themselves, to us volunteers, to be particularly “fragile,” or they may show unthinkable strength or, again, they may be extremely sensitive and be touched and affected by every single word that is said to them.
Relationships are also those that the committee has with the rest of the community for awareness campaigns. We want our target audience to be heterogeneous i.e., to include people who are already sensitive to the issue AND people who are not yet sensitive. However, over the years we have found difficulties in attracting the attention of the second type through traditional conferences on the topic with professionals in the field. We found that with a mixed mode (e.g.: entertainment shows with prevention messages within them), on the other hand, they were able to break down walls and engage more.
In general, in order to create a bond in all these situations, it is important that there is as a first thing a welcome without judgment and a great respect for the way such a pervasive and engaging experience is lived.
I remember, for example, a woman who was afraid and ashamed of her newly diagnosed cancer and refused to activate the process for the co-pay exemption because she wanted at all costs to avoid the moment when she would be confronted by a generic teller, who at that point would know about her disease, and this was an insurmountable stumbling block for her at that time.
But there were also women who instead felt the need to talk to someone and share their experience: some preferred to do so with people who had “already been through it” or were living it, while others preferred dialogue with those who were unfamiliar with the topic to avoid influence.
On the occasion of Pink Month, I ask her how the book “WOMEN WHO TALK ABOUT THEMSELVES, Stories of Breast Operated Women” came about. What emerged from their experiences and what struck her most about the words and style the protagonists used to describe themselves and their illness and experience.
Each of the women who took part in this project decided on the way she felt best to express herself without any interference from us. Some chose to write, some chose to paint, one chose to sculpt. Not all have used their real names, in fact, in some cases there is a pseudonym to represent them. The texts are different from each other and none is trite or full of clichés, some are written with events following each other in chronological order, others are focused on one or more emotions or a particular period without a before or after.
It struck me very much to read about the gratification of a woman who wrote how seeing far into the period of illness made her feel good, as if to say, “danger averted!”
I liked the irony in some of the stories as a way of downplaying.
Finally, I found the definitions of illness as a birth or as a tsunami, a whirlwind, terms that reflect the strong experience or dialogue with cancer, to be significant. Some were even able to say thank you because the disease helped them “find themselves “and they revised their values.
Thanks to the women who decided to tell their stories; it is therapeutic but definitely not easy.
Given the great participation in this writing project, have you thought about relaunching the project with a second edition of more and new stories?
The will for a second edition is there but material is needed to justify its release. The preponderant idea is to give a different slant From the first one that is to ask for input also from caregivers, health professionals and volunteers who in various capacities have to deal with this disease because we know that their point of view is also important and necessary.