By Evie Andreou
CAST ASIDE, ignored and overlooked, is how many women with Advanced Breast Cancer (ABC) feel, and in wanting people to understand that they are ‘not their cancer’, a new installation will open later in the week with real-life stories of how they disease has impacted on them and their families.
The ‘I am not the cancer’ installation is being organised by Novartis Pharma Services Inc Oncology in cooperation with Europa Donna Cyprus and it is part of the European wide Here&Now campaign.
The campaign was launched in Brussels in June 2013 where the breast cancer community gathered to discuss and debate how support and care for women living with advanced breast cancer could be improved. It coincided with the new findings from a European survey commissioned by
Novartis Oncology. The survey, conducted in nine European countries, aimed to draw a wider picture of the disease and revealed among others poor public understanding of advanced breast cancer.
The audiovisual installation is the work of two acclaimed artists; photographer Tim Wainwright and sound artist John Wynne, who bring forth the women’s stories and introduce the rest of the world to the psycho-social and economic impact of the disease on the women and their families.
It was first set up in Belgium and has travelled to six other European countries before arriving in Cyprus.
In each country the women whom the artists work with are found through cancer patients’ associations and in fact there was great interest from Cypriot women in telling their stories.
In Cyprus the artists worked with three local women and also use stories of women from other European counties.
The visitor walks into a dark room with six chairs in front of six screens where each of the six women’s faces, or the back of their heads is shown to symbolise the hidden nature of the illness. The artists then use sound and vision to create the experience.
“A lot of people have found it quite powerful. It feels very personal and direct, we use special speaker technology that when you are sitting watching the video it’s almost like the voice is in your head and the video material that we use… we made a decision to film the women not talking… it’s like listening to someone’s thoughts and they are just looking at you,” Wynne said.
He added that different people connected with different stories and that some people were almost always affected.
“People are moved by the stories. Occasionally they have been upset by what they see as something negative about the installation and the material used. But, this is an incurable illness and sometimes people struggle to deal with death, their own and the stories of others who are dying. People want a happy ending and sometimes struggle when there isn’t one,” Wainwright said.
The women are encouraged to talk about whatever they want to. “They tell us about the things that matter to them in every intimate way; we have no agenda so we let them say what they want to say about the situations they find themselves in. We don’t interfere,” Wainwright said.
“We tried to create a context in which they can think about and talk about the things that are most important to them; and of course with each woman most things are going to be different, every time we do the project almost we get a very different perspective on things,” Wynne said.
He also said that each of the Cypriot women’s stories was different and also quite different from anything else they had seen so far.
“There are different issues in each country and different issues according to whether they are in an urban environment or rural environment. In fact one of the Cypriot women we worked with is from a very small village in Paphos, and she talked about how nobody in her village had heard of anyone surviving cancer before and nobody talked about it… families who have had someone with cancer it was like a secret… kept in the family, so that was interesting having that perspective. We’ve never heard of that kind of situation before,” Wynne said.
He added that one of the English women that they worked with was all about the impact of the breast cancer on her career and her work, while other women have talked almost exclusively about their family and its effects on them.
“I have cancer but I am not the cancer,” said Tootje, one of the women from the Netherlands who had participated in the project. She had said that she was not afraid of dying but that she was worried about all the people she would leave behind, her children and her husband.
In her story she had said how her illness had affected her children and how her son had said in a school presentation that she would die in a year, because that’s what the doctor had told the family when the metastasis appeared six years ago.
Breast cancer is the most common cancer in women, and ABC largely affects women over 50, while 30per cent of women with early breast cancer go on to develop advanced disease. ABC is not curable but medical treatment minimises the symptoms, prolongs life and improves the quality of the patient’s life. The expected life expectancy of ABC patients ranges from two to four years.
Last year, 590 new breast cancer cases were diagnosed in Cyprus, among them four men, while 90 women with ABC died.
According to the research, women with ABC often feel invisible as they feel no one understands them. They feel isolated from others who don’t have ABC. They do not receive enough support, and when they do, that support eventually wanes.
Fifty one percent of ABC patients said they believed they are perceived negatively by society, while research showed that 32.1per cent of people asked did not know or could not give a definition of what ABC is while 77.1per cent did not know that ABC is incurable.
The findings of the survey showed that only less than one third of the women patients said they feel ‘strong’ or are ‘looking forward’ since they were diagnosed with ABC, and 56 per cent said their household incomes had fallen as a result of the disease, while 87 per cent said their expenditures increased to cover treatment and further medication.
The campaign calls everyone from health care practitioners, to decision makers to the public to all do their bit so that women with ABC receive the proper care and support they deserve.
Europa Donna Cyprus launched a campaign last month to gather signatures for the creation of a specialised breast centre in Cyprus, which would lead to a 30 per cent reduction in deaths, and they called on Health Minister Philippos Patsalis to keep his promise to create it. So far more than 20,000 people have signed the petition http://kentromastou.com.cy/
The art installation, which is under the auspices of the health minister, will be inaugurated at the Famagusta Gate in Nicosia by First Lady Andri Anastasiades on Friday November 7 and it will be open to the public from 4pm to 8pm that day, and on November 8 from 10am to 1pm and 4pm to 8pm.
Entrance is free. At the exhibition booklets will be distributed with the results of the survey.