It’s all about choice

news: It’s all about choice



I remember clearly the first time I met Cynthia Williams. I was in a small hotel overlooking the Douro River when my mobile phone rang. “You don’t know me,” a pleasant voice said. “My name is Cynthia Williams.” “Hello, Cynthia, how can I help you?” I replied. Cynthia paused. “You are the first person here to ask how you can help me,” she said. “I have recently arrived, and I am involved with the Mamamaratona.”

When Cynthia arrived in the Algarve, in the summer of 2002, she was surprised and dismayed at the lack of support for those affected by cancer. She herself had breast cancer in 1992, recovered and, subsequently, put a lot of her energy, determination and organisational skills to use, helping others. A trained Samaritan and experienced fund raiser, she has been active in the UK, Abu Dhabi and Kuwait – and so it was natural that she would gravitate towards the young group that had been started by Susana Grammiere, here in the Algarve. When Susana left, Cynthia did not want to let the group disband, so she took up the reins.

The cancer support group that she facilitates has no official structure. It meets on the first Wednesday of each month, at Loulé Sports Centre, and is currently open only to women – “well, women don’t want to show their scars or talk about nipple reconstruction with men around, do they?” The meetings are open to anyone who wants to talk – or just listen. There have been many occasions when people call Cynthia or her co-facilitator, Joan Martin, just to talk and to off-load some of the emotional burden that cancer brings with it.

In addition, they have visitors who want to listen to how other women talk about cancer and deal with the many practical issues to be faced. The mother of one young lady visitor lived in England and had recently been diagnosed with cancer, but would not, or could not, talk about it. The daughter wanted to know what her mother was going through, so she could help.

There is much more information available in the UK than in Portugal, and the group has access to up-to-date brochures and information sheets on just about everything. Prime sources are Cancer BACup, and the Macmillan and Bristol Centre organisations. Just realising that there is material that can be gone through to answer the questions that have not even been thought about, is a huge support. But, of course, not even that can replace personal contact with others who understand exactly what you are going through. “Some people talk a lot for a few weeks, then don’t come back for months, then drop in when they feel like it,” explains Cynthia. “Others don’t say much, but listen and ask a few questions. They take from the group whatever they need to, whenever they need to.”

While not wishing to criticise the system here, which is clearly under-resourced, Cynthia explains some of the frustrations. The AOA (Algarve Cancer Association) is not allowed to put any publicity into any of the health centres in the region to advise women of their existence or even give their telephone number, so many women remain unaware that there is a support system available. It seems that the level of communication between oncologists, and between hospitals, leaves much to be desired, and that does not help patients either. Working closely with the AOA, the support group can explain the options available to women who are unable to return to the UK for treatment. They know the various doctors personally, what facilities are available where, and how the system works.

In the UK, for instance, a doctor will talk with a patient ahead of surgery to explain the procedure. Inevitably, the patient is in a state of shock and does not take in what is being said, and cannot think of any questions to ask. To counter this, the doctor is followed by a nurse who sits with the patient and goes through the procedure again, giving the patient time for it all to sink in. Because of the huge lack of resources, nothing like that exists here, but, as Cynthia says, a system of volunteers would be a start.

From that first numbing moment when the doctor breaks the news, to deciding what treatment, if any, you are going to follow, to considering the implications for yourself and your family, it is all about choice. But that choice has to be based on the maximum amount of relevant information and, where possible, talking to others. Not everyone is as up-front as Cynthia about showing their scars, talking about drips and drains, and comparing notes, but, in the company of other people who have gone through the same experience, even shy or traumatised women will feel the therapeutic effect of sharing.

Everyone in the support group has been there, done that, got the scars and survived to get on with their lives. For any woman who wants information, advice – or just a point of contact – this is the best starting point there can be.

Cancer support group meets on the first Wednesday of each month. For more information, contact Joan on 289 843 472 or Cynthia on 282 401 791.

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