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 
https://www.facebook.com/resilienceinbreastcancer/

Weekly Discussion Summary ~ Postcards from Within

'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.'

#postcardsfromwithin

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 https://www.facebook.com/resilienceinbreastcancer/

Weekly Discussion Summary ~ Managing response and attitude

"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 https://www.facebook.com/resilienceinbreastcancer/

Weekly Discussion Summary ~ Impact on professional identity and work

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 https://www.facebook.com/resilienceinbreastcancer/

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 
https://www.facebook.com/resilienceinbreastcancer/

Weekly Discussion Summary ~ Depression

This week our Sunday discussion focused on depression.

Depression. It's a word that has come into our everyday language, sometimes in ways which are not so helpful. We all feel sad, we all feel low, but when someone experiences depression, these feelings persist for weeks and months. Depression is not a sign of weakness. It's not something someone can simply "snap out of."

Clinical depression affects people in different ways and takes many forms, including feeling sad and unable to cope with everyday life, feelings of pointlessness, desperation and in severe depression, suicidal thoughts. It can cause physical symptoms like fatigue, pain, insomnia and loss of appetite too. Depression can be a lifelong problem for some, with episodes being triggered by stressful life events and experiences which are traumatic - like a diagnosis of breast cancer. Depression can also come in cycles, seemingly without any particular trigger.

We poured our hearts out, women with a primary breast cancer diagnosis and women with secondary breast cancer, sharing some of our personal experiences of depression. We described dark days with no zest for life, a weariness that took away our motivation to carry on.

Many of us described becoming depressed once active treatment had ended; the hospital appointments cease and, with them, the structure that kept us going; everyone around us expects us to be back to our old selves; it’s time to go back to work or other routines. However, we feel shaken and lost, our confidence shattered by the whole trauma of invasive surgery and treatment. It’s easy to see how depression can either creep up on us, or hit suddenly as the enormity of what we've just been through hits home.

The debilitating effects of hormonal treatments taken by so many women, or, early menopause symptoms, increase the psychological demands we face, causing us to experience mood swings and fatigue at a time when we are already psychologically vulnerable.

Women with secondary breast cancer face unique psychological challenges - living with the knowledge that we cannot be cured, our treatment is ongoing and our regular scans and checks cause great anxiety as the quest to halt progression continues. We cherish every day, but we can also experience bouts of deep depression as the relentless treatment regime punishes our bodies and minds.

Depression can make us feel worthless, it can strip us of all joy in living. Fortunately help is available. Many of us shared that we had found talking therapies such as counselling, psychotherapy, Cognitive Behavioural Therapy and support groups helpful. Exercise - in many forms - can also be helpful. Anti-depressants and sleeping tablets have their place too.

Depression can mean we have to rest and take time away from work and possibly family leading to isolation and contributing to feelings of hopelessness. Some of us spoke about times in our lives when we felt we could no longer carry on. We also described how something or someone prompted us to reach out for help, to seek support from professionals, family and friends to get better.

For many of us, a first encounter with serious ill health or depression taught us how to look after ourselves. We learn to spot signs of sinking into depression and seek help to prevent it before it gets a stronghold. We learn to practice extreme self-care, and to reach out to each other for support.

Naz explained that depression presents an evolutionary paradox to scientists. Is depression a cry for help? Is it an attempt to conserve resources? Does it represent an exhausted brain? Is it a consequence of chronic anxiety? Is it a state of no hope, helplessness, and repeated failure? There is no future to look forward to. Is it a chemical imbalance?

Depression, Naz told us, is all of these things, but mostly it signals an exhausted brain, a brain so full of fear, anxiety and negative and traumatic thoughts that no room remains for cognitive thinking and common sense is replaced by irrational hopelessness. The neural pathways involved in goal driven behaviour are no longer working efficiently, and there is a reason for this. They can’t.

However desolate depression makes us feel, there is always a way back up. Naz told us how we may learn to thrive following depression, as our severely depleted brain resources slowly but surely return to normal. We can, with the help of others, bring ourselves back from the brink by training our brains to respond differently, by practicing cognitive focus.

There may come a time when we can use our depression to our advantage, beating it down with determination and our will, our desire to overcome adversity and thrive again.

This article highlights that we can learn to shake off depression, we can grow through it and beyond it to a place of strength where neither depression nor cancer defines us. This is our resilience.

https://theconversation.com/thriving-after-depression-why-are-scientists-ignoring-good-outcomes-98288?utm_medium=amptwitter&utm_source=twitter

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/

Weekly Discussion Summary ~ Coping with the Heat

We are currently experiencing a glorious spell of hot summer weather here in the UK but how does it impact on us?

Our discussion this week looked at how our members, women with primary or secondary breast cancer, cope with the heat.

Though a few of us revel in the sunshine, for most, these long, hot, humid days are bringing some discomfort, and for a few, misery.

For those undergoing active treatment there are particular problems with heat exacerbating side effects from chemotherapy such as nausea, dizziness and headaches; from radiotherapy, where the skin may burn (not dissimilar to sunburn); for those of us on hormonal treatments, or with menopausal symptoms, hot flushes become more severe, disrupting our sleep, increasing our fatigue.

Many of us talked of feeling particularly exhausted during hot weather, and few of us enjoy sunbathing following a breast cancer diagnosis, often worrying about areas of skin that have been treated with radiotherapy or surgery being exposed to the sun. For some women, the shivery cold feeling brought on by some chemotherapy treatment is made worse by contrast in the heat, particularly as everyone around us is enjoying the outdoors.

Those of us with lymphoedema and have to wear compression sleeves suffer from increased swelling which can also lead to rubs and blisters and wearing our uncomfortable compression garments can feel unbearable. Women who have lost their hair from chemotherapy and who are wearing a wig commented that wigs are also extremely hot and uncomfortable to wear in the heat.

A few of us reported developing acute sensitivity to sunlight following chemotherapy, (polymorphic light eruption), others suffered prickly heat rash.

We shared our many tips on coping:

* Products such as chill bandanas, ice towels and pillows.
* Drink, drink, drink! Freezing water bottles to retain the chill longer, drinking fruit infused teas and waters (mint, cucumber, lemon), elderflower cordial, and lots of ice-cream!
* Hand-held fans and desk fans can be a great help, as can wet wipes, and little cooling sprays which can be bought as proprietary products or made up at home with a spray bottle and some water.
* Light, loose clothing made of cotton or linen was recommended, also light cotton undergarments, and sports clothing made of fabric designed to wick away sweat.
* Hats and parasols are useful accessories.
* If travelling on public transport, avoiding peak travel times and always carrying water.
* Resting during the hottest part of the day and increasing activity when it's cooler, like early morning and evening.

Some of us like all our windows open night and day to bring in whatever breeze might be outside, others are concerned about insect bites as these can be problematic to women after breast cancer, particularly for those who have lymphoedema. A bite can easily become infected as the body cannot fight the toxins efficiently without an active lymph system. Insect repellent alongside a high factor sun cream may help prevent the midges from biting.

Despite the discomfort, most of us said that a bit of sunshine helps lift our mood. Maybe it’s just that we’re having too much of a good thing this year!

If you are a woman living in the UK with a diagnosis of breast cancer and you would like to join our private group please send us a private message via the facebook page 
https://www.facebook.com/resilienceinbreastcancer/