In our weekly discussion we explored the struggle of managing the responses and attitudes of those around us, in primary as well as secondary breast cancer, including those of us living with advanced secondary breast cancer.
Most people, we agreed, do not appreciate the complexity of what it can mean to live with breast cancer, for instance they don't understand that the diagnosis itself has a psychological after-life, that many of us live with ongoing physical and psychological effects; that we live with the uncertainty that we may develop a recurrence or secondary breast cancer.
Most people do not even know what secondary breast cancer is, and are even further from being able to imagine what it might mean to 'live' with the demands of ongoing treatment and the knowledge that our lives will be cut short. Many of us remembered that it had taken us a long time to acquire the knowledge of what secondary breast cancer means, and also that its default is NOT dying!
Whether we have primary or secondary breast cancer, we face a process of psychological adjustment which can result in us falling out of step with our families and friends. They too, will be trying to understand our diagnosis and what it means and our different ways of coping can lead us to rub up against each other causing unintentional tension, and for many, isolation.
Common responses to breast cancer swing between two extremes: on the one hand people (including us) may minimise the impact of breast cancer, with the assumption that once active treatment is finished, the breast cancer chapter is now over, and we can get on with our lives (the reality as we know is much different); on the other hand are those that treat us as if we might break, and appear to expect us to prepare for our goodbyes as the cancer progresses.
A common difficulty is that there is often a gap between how good we look and how we really feel. We might for instance say that the impact of breast cancer robs us of our womanhood. The answer we get is: ‘but you are looking so great’. This kind of response puts a stop to any conversation because we immediately feel that our emotions are not valid. How can we have a conversation about the complexity of our contradictory emotions, our sense of lost selves, lost opportunities, capabilities, and, longevity?
Many of us had experienced compassion fatigue, that is to say, the offers of help, support and an accommodation to our needs was very high initially, but wore thinner over a prolonged or complicated illness. This was often compounded by our own inability to ask for help or even communicate our needs when we are at our lowest ebb.
A minority of people seem to get hooked into the drama of our diagnosis and treatment without realising how hurtful this can be, especially when we are vulnerable. Understandably the "she kicked cancer's butt" narrative features in far more headlines than the "she got cancer again" creating a huge sense of personal failure if we take on responsibility for any setbacks in our illness.
Some of us learn to cope by pretending we are OK - if we pretend to be OK, we don't bring the mood down, we don't make many demands, it is easier for everyone. But of course we aren't OK, or at least not all the time.
What we really need is practical help, a recognition that there isn't always a 'happy ever after' to problems which arise, it isn't within our control. We need our communities to accept us as we are, know they can't always make it better, love us for our flaws, to try to bear their own pain and don't expect us to lie to make it emotionally ok for them.
If we are lucky, those around us will be careful of what they say and how they say it, striking a careful balance between acknowledging our situation and yet allowing us to be as much of ourselves as we can manage, not ignoring cancer, and yet not allowing their own emotions to become a barrier. We understand that this isn't easy and remember that we too were ignorant and we blundered. We wish that others could simply listen, accept, and hold our hands, nod, and say that they understand, that they want to help in any way.
Living with advanced secondary breast cancer means that some of us are facing the deeply painful knowledge - both for us and our loved ones - that the end of our life is in sight. It is inevitable that we cope with this reality in different ways, maybe it feels unreal, or unbearable. We might remain in shock for a long time. For some of us the default will be denial and we instinctively block out this knowledge, others need to face it head on.
Whether we have primary or secondary breast cancer, we want to live, in the best possible way, and we need to be able to adapt. This involves learning to embrace our vulnerability and continuing to grow in new ways. We are not ready to die, no matter what stage we are at. Day-to-day, we live with the presumption that we are immortal, even though we know that some day we will die, but this knowledge doesn’t come into our conscious awareness unless that ending is brought to the surface. Our aim is to live, and somehow to hold on to the knowledge that we ARE stronger and more courageous because of our heighted awareness of our own mortality. We are still about surviving.
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 via https://www.facebook.com/resilienceinbreastcancer/
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