Our weekly discussion focused on the different ways we cope following our diagnosis with primary and secondary breast cancer, as well as recurrence, and how we get practical information and emotional support.
They say that knowledge is power.
This, we found, can be context dependent, although many of us had now reached a point where mostly, we preferred to know, so as to prepare and protect ourselves, irrespective of the amount of control we have over the outcome.
Not knowing can be helpful too though. Some of us, especially at the point of our diagnosis with primary breast cancer, described feeling shocked and numb, and having chosen (or not felt able to make 'a choice') to rely totally on the knowledge and wisdom of our treating teams. It's only as these intense feelings subside, that we begin to open our eyes fully and see this new country we find ourselves in.
Women with secondary breast cancer described the empowerment that came from being able to reach out using social media to get instant information from other women, based on personal experience of treatment possibilities when they had been diagnosed with progression. This was especially important given the complexity of treatment options and how finely balanced decisions can be, which meant that they themselves can have an important contribution to decision-making. Likewise, finding out about side-effects that aren't always mentioned by clinicians. Those of us who had experience of recurrence also found that in the midst of the fear and isolation we feel, peer support, the knowledge that we are not alone and that others have also walked this path offers hope in the darkness.
Naz explained, from a neurocognitive perspective, how emotional and social support and networks are so important - talking and writing, unconditionally and freely, helps us immensely because it frees up and boosts working memory capacity. Naz told us that working memory helps us regulate and manipulate information which then gets stored by our brains. It is what she calls the supervisory system in the brain: it helps us practice what needs attending to, and what needs ignoring. When we exercise working memory through writing, or talking, or simply listening to other people’s similar problems, we free up capacity in our brains that would otherwise be filled up with worry, anxiety, apprehension and fear. We become more emotionally stable and feel a bit relieved (like when we cry for example). Different stages of trauma require different practices of resilience. To allow ourselves to be ‘weak’, to cry, to vent, to confide, is actually an important cognitive and emotional step towards recovery.
Doing the little things that can strengthen our physical well-being are important - going to a group, writing, talking, walking, mindfulness - all help us to cope with the emotional and psychological demands of the situation we find ourselves in. Though the impact of the knowledge is complex, it can be scary at times. Not knowing can also be helpful at times, but it’s a delicate balance, and requires us to be able to be flexible and adapt.
If you are a woman with a breast cancer diagnosis living in the UK and you would like to join our private members group, please message us via our facebook page at https://www.facebook.com/resilienceinbreastcancer/
