Saturday, 18 August 2018

Weekly Discussion Summary ~ Coming Out about Breast Cancer

“‘Coming out’ about breast cancer - who do we tell, how do we tell, when do we tell?”’

In this week's discussion we explored the challenges and benefits of talking about breast cancer to our families, friends and employers.

The task of telling others about our initial diagnosis of breast cancer, is, most of us agreed, one of the most challenging and distressing aspects of our whole experience. Although there is a wealth of material produced by charities, many of us had not had much awareness of potential sources of support and instead relied completely on our instincts at a time when we were highly distressed and vulnerable.

Our discussion, which mainly consisted of women with primary breast cancer and some women with a recurrence and secondary breast cancer, highlighted that the way we manage who and how to tell we have breast cancer is influenced by who we are and our coping mechanisms. The method we adopt is usually in line with how we generally communicate with others and how private or public we are about our lives - if we are open, we usually tend to talk openly about cancer too. Others, more private, either share little information or might choose only to tell close family and friends. It was clear from our varied experiences that there is no wrong or right about it, and that we do take very different routes.

Our approach had varied, depending on who we were telling, for instance some of us had waited until we were calmer, or clearer about aspects of our treatment before telling our children. Others described deliberately keeping the news from parents in fragile health in order to protect them from distress and worry.

We realised that telling others about our diagnosis inevitably means that we were confronted our own feelings about cancer. The act of "sharing" can feel like a breach of our psychological defences, so if, for example we are in a state of denial, we might feel extremely vulnerable afterwards, or, if we've lost a relative, especially from cancer, old scars are reopened once more - and not only for us.

Telling others is a balance between managing our own needs and the needs of our loved ones. Sharing our news puts us in the painful position of witnessing the reactions of our family and friends who understandably respond with denial, shock and express their own raw distress. Many of us had taken on the role of comforter, consoling and reassuring others that we would be OK, all the while masking our own doubts and uncertainty. Some of us worried that we would be avoided by friends if our news caused them discomfort or embarrassment. Some of us had faced hurt feelings, for example if a friend felt they had not been told in a timely manner.

Indirect methods of communication can help, communicating via messenger, email, Facebook, or, asking a trusted person to take on the role of sharing information.

Talking to our employers about our initial diagnosis was often not as challenging as dealing with colleagues or clients (if our work brought us into direct contact with the public). However, going forwards, the greater struggle was to explain longer term effects such as the need for ongoing adjustments, the impact of treatment on our performance and whether, when and how to tell a prospective employer.

Is breast cancer a disability? Not all of us were sure about this, although some of us felt that the impact of lymphodema resulted in considersble disability.

Is breast cancer a vulnerability? Yes. A reminder, to ourselves, but not necessarily to others who soon forget.

Sharing the news of a recurrence or secondary breast cancer feels very hard, and is often accompanied by even greater sense of shock or failure. This time we know exactly what treatment will entail. Those of us living with secondary breast cancer described the unique challenge of trying to convey to those around them that their cancer was now incurable and what this meant, striking a balance between being both hopeful and realistic about the future.

If we've had primary breast cancer, how do we talk about our experience of cancer going forwards, after active treatment has finished?

On the one hand, it can be exhausting telling people, but we also want them to be more vigilant for their own health, to raise awareness and understanding in our networks and communities. We also need the chance to talk through how we live with the effects of breast cancer, to explain that it does not define us but it is part of us.

Naz told us about, ‘The Other Side of Sadness’, written by George Bonanno, an international expert on research that looks at coping with loss due to trauma, in other words, grieving. He tells us that there is no right or wrong way to grieve, some of us seem to ‘move on’ faster and others tend to get stuck. Even if we appear to move on, it doesn’t necessarily mean that we have not grieved. Resilience, Naz reminded us, is a natural characteristic of the brain and so our brain does what it needs to, to deal with trauma.

Positive things can result from "coming out" about breast cancer - we access emotional and practical support from those around us and many of described having been buoyed up by our experiences of what can be an outpouring of love and support. If we can gain a sense of control from who we tell about our cancer and how we tell them, we are empowered. We feel we can make a contribution, that others will realise that they can also be at risk of breast cancer. We can convey an important message. That yes, it can happen to you too.

If you are a woman living in the UK with a breast cancer diagnosis and you would like to join our private group please send us a private message

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