Saturday, 21 July 2018

Weekly Discussion Summary ~ Can breast cancer ever be all in the past?

We hear the phrase 'it's all in the past' often in our fast-moving world where there is an almost relentless pressure to keep moving forwards. But can a diagnosis of breast cancer ever be all in the past?

This was the question we asked ourselves in our weekly discussion where we explored how we cope when we return to work, start new things or try to get back into the normal rhythms of our lives.

The end of active treatment signals a return to normality, yet many of us felt that this is the time when we become most acutely aware that we feel changed beyond all recognition. At a time when we expect to begin a new chapter in our lives, the past is all we are reminded of - the clothes we can no longer wear, the tasks which take us longer to complete, the confidence we no longer have to do things which we previously took for granted. There is a gap between our expectations and our reality and unfortunately, others still have a poor understanding of the disease that we have endured and continue to endure through its side effects.

Our hair may have grown back. Our scars and are invisible to others yet are a daily reminder of our past. We can look good in clothes. Many of us are told - ‘you are fine now, you look great’. But we feel far from great. We are not confident and we worry about our mistakes. We are beyond happy to have our lives, to to be back, but for crying out loud we wonder, why does everyone think we are ‘fine’? What if we do not live up to that expectation? Will we lose our jobs? Will we be letting our family and friends down?

Depending on our situation, cancer is still a big part of our lives, we may be on continuous medication, waiting for reconstructive surgery, perhaps we are adjusting to long term side-effects. We may not yet know - or want to know - the statistics about recurrence, or secondary breast cancer, but believe us, the fear is still there, an unopened door to a room in our minds which we walk past everyday without having the courage to enter.

Some of us described returning to much-loved careers with renewed determination, others had made the difficult decision to give up or change employment. Some of us described our distress and exhaustion because we felt we had no choice but to continue in roles despite our recognition that they were not compatible with our needs.

Very many of us described how we are still struggling with these challenges three, four, five years after being diagnosed with breast cancer.

What about those of us with secondary breast cancer?

We face ongoing treatment and the knowledge that we cannot be cured. For some of us, working is possible, and, we are well enough to continue with many aspects of our lives. We face the very real challenge that there is widespread ignorance about secondary breast cancer. There are not yet narratives available to us which relect the complexity of our individual experiences. We find it hard to describe our situation and the silence that greets us when we try to communicate our reality can add to our sense of isolation.

Our discussion highlighted that whether we have primary or secondary breast cancer, our emotions are not straightforward. We can be both excited and hopeful AND fearful and apprehensive too.

Managing expectations of others is also challenging. We don't want them to think that we are not capable. We don't necessarily want sympathy, but we do need understanding: understanding that we are not ok, even if we look ok, that the fatigue we experience will not be cured by an early night (even if we could sleep!), that we continue to experience long term side-effects.

Our memories form the basis for the story we tell ourselves and others about our lives and who we are. Our memories form the fabric of our identity. Naz explained that from a psychological perspective, our pasts are a significant part of the present. We cannot leave the past in the ‘past’ as without it, we wouldn’t have memories to build on and we wouldn’t look into the future or learn new things. The past is the foundation which grows into the present and in turn finds the future.

We are cognitively vulnerable, we are emotionally vulnerable. When expectations rise, our moods can slide lower because we know we can’t achieve others’ expectations. As the gap widens, we become more aware of our losses. We can become depressed.

How do we deal with the reality that we are not what we used to be, we are not bouncing back to our old selves, we are this new self, bruised and battered self, yet still have enormous potential?

* We have to put ourselves first. We have to take things slowly. We need to build on our resourcefulness and develop tools to implement our strength slowly.
* We have to learn to be more honest about our limitations and needs.
* We need to go slowly. There is a fine line between what we CAN do, and what we are capable of doing.

Others want us to be great, to be fine, to be happy, that it is all over. But the reality is that we take our cancer forward, it is a part of us forever, vividly, even if it doesn’t define us. We don’t want to appear weak and fragile but the reality is that we are weak and fragile. We have changed, we are trying to adjust. This doesn’t mean we are not capable, we are, but we can’t access the same energy and resources.

Cancer doesn't define us, but it is part of us. Acknowledging our vulnerabilities and the uncertainties we face does not make us any weaker. Thinking about cancer does not put us at risk of getting it again! It simply means we are strong enough to face our fears and rise to the challenges that face us.

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

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