Saturday 25 August 2018

Weekly Discussion Summary ~ Taking now the right time to make changes?

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"A diagnosis of breast cancer changes our relationship to the future. We start to wonder about the wisdom of putting off our dreams for the future, that trip of a lifetime we said we'd make, that home in the country we had promised ourselves when we retire. We ponder the choices we have made - are we happy with them?"

In this week's discussion we asked ourselves the question: “A cancer diagnosis makes you “take stock” but is now the right time to make significant and difficult life changes?”

A cancer diagnosis is a life threatening and life changing event. When we hear the words "you have breast cancer" consciously or not, we wonder how long we will live. In the blink of an eye, we shift from living as though we are immortal to deeply realising our fragility.

We have never felt more vulnerable, but mentally we prepare ourselves for the challenges ahead and how we will live our lives. We are 'mindfully' reminded on a daily basis - especially those of us with secondary breast cancer - that now is all the time we have, we are not guaranteed tomorrow and so we know we must make the most of today. We begin planning, thinking ahead, attempting to ‘take stock’. We evaluate our life choices, we may experience a shift in our priorities - we are no longer willing to tolerate people who don't value us, or, perhaps work suddenly seems unimportant. ‘Live life to the full’ becomes our mantra - we say it to ourselves over and over, sometimes with gratitude, sometimes with happiness, sometimes with recrimination and sometimes with an ache in our hearts for the things we know we want to do but can't..........

A diagnosis of breast cancer changes our relationship to the future. We start to wonder about the wisdom of putting off our dreams for the future, that trip of a lifetime we said we'd make, that home in the country we had promised ourselves when we retire. We ponder the choices we have made - are we happy with them?

Our discussion highlighted that many of us are no longer willing to compromise on our aspirations, we put into action our plan to relocate and reduce our hours; in contrast others described a deep need for stability and continuity, we want to stay close to home and family.

Anticipatory pleasure - looking forward to a well-deserved holiday at the end of a challenging time - no longer sustains us when our deepest fear is that the future will be even more of a challenge than today. If we are not careful, we stop planning, we stop dreaming and our horizons shrink. For some, this generates a sense of well-being as we live with a deeper connection to the here-and-now. Others feel a sense of restlessness, a need to make changes to their lives.

In the background (if we can call it that) are the numerous consequences that impact our psychological and physical well-being brought about by our diagnosis and treatments. The side effects we continue to live with restrain us considerably: fatigue, pain, lymphodema, chemo-brain and chemo-brain; altered body image, sexual problems, damage to our self-esteem and confidence, social isolation and more. We live in a constant state of needing to re-adjust within the restrictions we face – secretly some of us might wonder how we can make the MOST of what has changed for us?

And then there are changes that we want to make to enable us to live a better and longer life like perhaps changing our diet or career. The question raised is whether now is the right time to make them? How far can we see in the future? Are these changes necessary for prevention of disease progression or recurrence? These questions make us wonder what our priorities are.

We plan for the uncertain future, and yes we do ‘take stock’ but this can come with anxieties and fears. We are about surviving Naz told us, with her neuroscience hat on. The brain is ultimately geared towards taking stock, especially at the time of trauma. Our emotional brain becomes highly vigilant for signs of threat, or potential threat, and signals to more cognitive and prefrontal regions and functions of our brain to ‘take stock’, to prepare, to plan, to protect. In life threatening situations, like being diagnosed with cancer, this can become the default mode of the brain and so it may feel exhausting for some of us more than others.

Psychologically, we realised, the challenge is to learn that today AND tomorrow are equally important. The present AND the future. We need to create a sense of continuity between our pasts, our present and our future. We carry ourselves forward and it’s the balance between leaving behind and taking forward, and living in the present – instead of compartmentalising our lives we need to strive for continuity and growth.

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

Saturday 18 August 2018

Weekly Discussion Summary ~ Coming Out about Breast Cancer

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“‘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

Thursday 9 August 2018

Weekly Discussion Summary ~ Postcards from Within

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'I am not what happened to me. I am what I choose to become.' C. G. Jung

Our discussion this week was inspired by a post from member Elizabeth.

'This piece is part of a series called Postcards from Within by North American glass artist Denise Bohart Brown. It spoke to me in a way that art rarely does.

I am not what happened to me. I am what I choose to be.

I am not defined by having breast cancer. It has changed me. Stopped my breath. Caused me to stand still. Brought tears. Fear. Pain. More than I could imagine. Still does.

It happened to me. It is happening to me.

But I choose to be more than the experience of having breast cancer...
I think if I were to send myself a postcard from within, this is what I would write.'

We invited our members, who are women with both primary and secondary breast cancer diagnoses, to submit their own postcard from within. A selection of excerpts from their contributions are attached to this post.

If you would like to, please add your own postcard in the comments: what would you write if you were to send yourself a postcard from within?

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

Saturday 4 August 2018

Weekly Discussion Summary ~ Managing response and attitude

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"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."

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

Weekly Discussion Summary ~ Impact on professional identity and work

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Will I still be employable after I've been diagnosed with breast cancer? Will my employer still see me as someone worth investing in? How will I be seen if my organisation needs to make cuts? How should I approach my employer if I need support?

In this week's discussion, our highly personal stories illustrated the impact of our diagnosis on our professional identities and roles at work. Our diverse experiences also highlighted the widely different ways that our employers view and support us after a diagnosis of primary or secondary breast cancer.

As we know, the psychological impact of a cancer diagnosis and its treatment is often underestimated - we too can underestimate the physical and emotional impact, numbing our feelings and coping by minimising the experience may serve us well until we try to resume the demands of our former lives. Suddenly, we realise we are exhausted. Yet, we feel we can't ask for help. After all, our treatment has finished and 'normal service has resumed' hasn't it?

This gap between expectation and reality creates huge pressures when we are feeling vulnerable and fearful.

A few of us maintain our continuity at work throughout, describing our careers as a refuge in the storm of cancer. Others shared how they had valiantly used up precious annual leave to recover from surgery, either from unsympathetic employers or small businesses. Others had taken an extended period of sick leave.

Erosion of self-confidence was a common response. Self-doubt creeps in to the mind of the most competent of us, and the realisation that we are not the same person we used to be adds to our anxiety. So many of us have little voices inside our heads telling us that we can’t be successful now. And yet, we do not want to be seen as less capable or less competent than our peers in workplaces which are increasingly competitive and under pressure as a result of economic and legislative demands.

A supportive line manager or supervisor can make a huge difference - someone willing to try to understand our experiences and who is willing to help us to balance our needs and our capabilities. Those of us who had received robust support, suitable adjustments and flexibility valued it enormously and felt our performance improved as a result.

Support from colleagues may also be key, and where it is lacking (some described colleagues taking a blasé attitude – 'she’s been off sick', 'she’s better now, let’s get on with it') - adds to our difficulties.

Our experiences highlighted that employers and sickness procedures often view us as idlers and shirkers. This can lead us to feel worthless and severely undermined.

Many of us take stock and consider our futures. We make tough decisions about work, including reducing hours or responsibility, changing roles or finding something completely different to do. Some of us give up work altogether, perhaps via medical retirement or redundancy. Others are determined to prove themselves as capable as they always were, and take on perhaps more than we should in order to continue to keep ahead of the game.

Despite clear legal requirements and guidelines for employers, our experiences indicate that they are not always being followed, and when challenged, the resulting stress caused can be just too much for us. Occupational health teams, designed to assist both employer and employee in coming to a suitable agreement regarding reasonable adjustments, can be helpful, or punitive. Some of us had chosen to fight for our rights, others walk away.

A common theme was managing unrealistic demands and some of us felt we had been set up to fail. We don’t always have knowledge of our rights or the energy to challenge discrimination and poor practice. We can end up being managed out of jobs by employers based on capability. We also feel uncomfortable or a nuisance for continued reduced capability or significant sick leave, and employers often show their displeasure by reducing or removing sick pay once they have delivered on their legal obligation.

Those who changed their roles, perhaps being given less work and regular cover described feeling guilty for doing less. Resentment from colleagues may follow. Others feel we have to take on more and more to ‘show them’, and we feel must hide our vulnerability.

Even those who have a satisfactory return may find that support rarely continues past the phased return period, even though the long term after effects of treatment may continue for years. We feel we must hide our issues from our managers and colleagues and battle on even when we feel unwell. We may not apply for promotions or seek career progression for fear of taking on too much.

A very few of us have found excellent bosses with whom we can be honest and admit our vulnerabilities. These bosses are rare, it seems!

For those of us with secondary breast cancer, treatment continues indefinitely. Continuing to work is an option many want, as it gives us normality and purpose, and some can and do. Some choose not to work. Others, who would like to continue working but their health doesn’t allow it, feel forced to stop.

We would like to see better educated and informed employers who are proactive in offering flexible, long-term support. We don't lose our skills or our enthusiasm and a breast cancer diagnosis need not be the end of a career; it can be the beginning of a new one, with increased skills and loyalty, perhaps including more balance and self-care, but no less rewarding for both employer and employee.

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