2023-08-24 09:00:40
When one person gets cancer, the whole family gets sick. Not strictly speaking, of course. But in cases where the tumor affects one of the parents, it is inevitable that the disease will have repercussions, even important ones, on the children – especially if they are young. This is what happened to Conor O’Leary, now head of the Purple House Cancer Support Center in Wicklow, Ireland. Who has transformed his family experience into an association of help and support for all cancer patients in the country, and for their families.
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“Nobody told us anything”
“I was five years old when my mother was diagnosed with skin cancer,” recalls O’Leary at the meeting “Beating Cancer: scientific advancements and views from a patient perspective” at the MSD Biotech Site in Dublin. Mom was transferred to the hospital, and Conor and his brother were sent to their grandmother. “Nobody told us anything, we didn’t know what would happen the next day. And when my mother returned home, no one gave us a hand, either to manage the therapies or to make ends meet. In short, as a family we felt abandoned and without any kind of support”. On the other hand, thirty years ago cancer was still a disease surrounded by stigma, and few had the courage to speak openly about it. When cancer strikes a family nucleus, children, adds O’Leary, are the most fragile part, but also the most neglected.
Thankfully, Conor’s mom recovered and lived for a long time to come. But she has not forgotten that sense of loneliness that had surrounded the family struggling with her illness. Thus, in 1990, she created the “Purple House” support center. “We wanted to fill that void we had felt around us, that lack of words that would help us better manage many difficult situations. We wanted to make sure that no child would experience that feeling of abandonment from the community that my brother and I experienced,” adds Conor.
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The support of Purple House
Today the Purple House is Ireland’s premier cancer patient and family support centre. It provides psycho-oncology counseling not only to people with cancer, but also to carers, friends, all health workers, free of charge thanks to donations and support from the Irish Health Service. Thus a negative experience is transformed into positive action. “I ask physicians to consider the emotional and mental health of patients, not just their physiological needs. I wish they would ask questions like “how are you feeling? Do you need help? Do you need support?”, and if the answer is yes, they should raise a flag and signal it. Of course, the medical part is important, but we must also consider how the patient feels, how his family is reacting to his illness, how they are coping with the difficulties. If he notices that the patient is struggling, the doctor can give him our reference, we can take care of him and support him in the best possible way”, continues O’Leary.
And if doctors, in Ireland as in Italy, don’t have the skills or the time to manage the emotional aspects of the disease, they can delegate this role to those who work with them. To specialized nurses, to people who work in hospitality, who can advise, direct, suggest to contact the Purple House. “We have the skills, we have the time to help patients in need. People who contact us are placed in support groups and counseling sessions – adds O’Leary – and we have different types of support programs for children and adolescents, to help them manage their emotions”. A six-week program to give the child extra tools to manage anger, sadness, worry. “We help kids direct their anger not at the sick parent, but at the disease, because when you have cancer, it’s nobody’s fault. In this way, even the little ones can understand that their anger is not against their mother or father, but against what is happening to their family ”, she explains.
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An aid from art and creativity
In this, art helps: children learn to manage mourning too, if death occurs, through creativity. “Children don’t always find the words to say what they feel: through drawings, on the other hand, they can express so many things, the feelings and emotions of that instant. And then – continues O’Leary – we talk to the schools, we help the teachers understand how to help that child who is going through a complex period”. As a traumatized child, Conor knows what happens when the brain refuses to open up to new, learning and socializing. “I figured it out many years later, but certainly I was a mess at school because I was living in an extremely stressful situation. We must say this to those who work with the youngest: they are not less intelligent children, they are children who suffer”.
Even death must be managed: mourning is a period that must be lived. But if it lasts too long or leaves too deep marks, it’s important for a counselor to help us, providing us with the tools to move forward. If, on the other hand, cancer is cured, adds Conor, society must learn to move on. It is what in Italy we call the “right to be forgotten”: a battle by the Aiom Foundation and patient associations, so that the disease does not remain a lifetime mark. “Even in Ireland we are promoting a similar initiative. Of course, if there were action at a European level it would probably be more effective. If you get cancer it’s certainly not your choice – concludes O’Leary – and above all if you’re young and you still have a lot of life ahead of you, it’s not fair that you are further penalised”.
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