Thursday 19 January 2017

Weekly Discussion Summary ~ Coping at Work

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Summary of our weekly group discussion ~ 19th January 2017


Does a breast cancer diagnosis undermine us at work? Does it adversely impact our horizons or make us consider alternative career routes?

These were some of the questions we asked ourselves during this week's discussion - 'coping at work following a cancer diagnosis.'

Our lives are never the same once we have been diagnosed with breast cancer, but, if we haven't continued working during treatment, once we have finished our chemotherapy/radiotherapy/surgery, we slowly begin to face our lives as they once were, even though we are fundamentally changed.

One of the most difficult challenges that faces us is returning to work, and finding our new identity at work when we are, in all likelihood, still dealing with the challenge of ongoing side effects. Even when we want to return to work, our energy levels can be low, our confidence can be shattered. Even the most supportive colleagues can have unrealistic expectations that we are cured, or conversely, that we are not up to it anymore.

Many of us described having to try harder because life is now more difficult for us. Some of us wondered whether the 'new me' was capable of sustaining the same level of performance as we used to due to fatigue, chemo-brain and so forth. Some of us described managing stress differently - in some instances more effectively - some of us had reduced our hours (perhaps impacting on income and a loss of identity), or had made the decision to give up previous roles because our priorities or needs had changed so greatly, either relinquishing responsibilities, choosing not to work, or changing direction, perhaps by retraining or setting up businesses.

As a group, our jobs encompassed a vast spectrum of roles, including public and the private sector. A very few of our members described highly supportive managers and colleagues. For these individuals, it was clear that an actively supportive and understanding line-manager played a crucial role, alongside adjustments to their working day such as staggered start times or working from home. However, many more of us experienced difficulties and stress as a direct result of inadequate support, inflexibility and unrealistic expectations. A few of us had been left devastated by shocking discrimination, despite the existence of legislation intended to safeguard and protect us.

At best, we thought that it was difficult for employers and colleagues to understand what we’ve been through and to support us to reach our fullest potential. For some of us, support from occupational health had led to adjustments in our work and roles or we had used the Equalities legislation to obtain reasonable adjustments. Not everyone saw themselves as disabled, and saw this as an unwelcome and unwanted label, whereas others, particularly, but not solely those who had experienced significant losses in physical functioning, described having accessed practical support, without which they would not have been able to remain in employment.

Many of us described having careers which are a huge part of our lives and we continue to impact and engage in the work place. For those of us who want to remain in employment, what we have learned from our experience can make us more skilled, more insightful and our contribution even greater. We can make a huge difference - with support.


Tuesday 17 January 2017

Weekly Discussion Summary ~ Post Traumatic Stress Disorder and Breast Cancer

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Summary of our weekly group discussion ~ 17th January 2017


The starting point for this week's discussion was a paper* which reported that nearly 80% of women with a breast cancer diagnosis experienced PTSD for at least one year after their diagnosis.

As a group, our experiences were diverse, including women with primary breast cancer, recurrence and secondary breast cancer. Some of us had finished our active treatment, while some of us were still undergoing treatment for primary and secondary breast cancer. Many of us shared that we experienced insomnia, nightmares, flashbacks and panic attacks. Some of us described our minds going into over-drive and our efforts to manage, as well as feeling disconnected, or, conversely, highly sensitive. Some of us had also been been diagnosed with depression and/or anxiety.

Naz explained why anxiety, depressive vulnerability and PTSD can be seen as ‘normal’ responses to an ‘abnormal’ set of adverse events and experiences. For instance, depression is a natural response to loss and trauma involving helplessness and despair; anxiety and worry are natural responses to profound, single, or prolonged sets of fearful experiences, particularly when they are beyond our control and involve uncertainty, fuelling our stress responses.

What happens when we are confronted with life threatening events involving significant degrees of uncertainty?

Naz told us that our amazing brains have evolved to respond in ways that protect us and aid our survival. So, if our goal is to be vigilant to a potential threat awaiting us, the emotional neural networks in our brain will be on high alert, responding continuously, sometimes on over-drive, impacting on stress hormones such as cortisol. Our cognitive systems in principle help us to regulate our emotions, but the emotion - cognition network is highly connected so that in trauma, our cognitive systems take a backseat while the emotional networks keep firing.

Naz shared that evidence which shows that in anxiety especially, a system called the default mode network, a network supposed to recharge our brains at resting state, and the amygdala, an organ key to experiencing fear, become highly active. This is linked with a prolonged experience of anxiety symptoms well after the event, even for years to come. The brain adapts to this vigilant response and clinical disorders can develop because it is simply too much for the body to take on.

The article* summarises a number of PTSD symptoms, many of which were experienced by the group including:
Emotional numbing, or distancing, because the brain goes in protective mode.
Poor concentration.
Lapses in attention and poor memory.

Why does this happen?
Naz explained that our emotional networks prepare us for danger which means our cognitive systems, which have a limited capacity, need to work harder to help us regulate powerful emotions, such as intense fear.

Almost all of us had vivid memories of our diagnosis and experienced a range of powerful emotions such as fear and anxiety which continued during our treatment, for instance, surgery, or emergency admissions during chemotherapy. Some of us described witnessing deeply distressing scenes while in hospital, for instance someone witnessed a heart-attack. Our heightened, and sometimes overwhelming feelings continue, not only during active treatment, but following it, for instance, when we have scans, or when new symptoms arise which require investigation. For those of us living with secondary breast cancer, these intense emotions are ongoing and relentless.

Some of us had experienced trauma prior to our diagnosis of cancer, for instance neglect in childhood, or abuse. As horrific and distressing as these experiences are, and especially challenging when they were followed by cancer, it became clear to us that the experience of trauma in cancer presents unique challenges: when we think of trauma as a result of war, abuse, a serious accident or crime, the task facing the individual is to move on in their life after these terrible events and experiences. However, in cancer, the threat to our lives comes from within us, we cannot flee from ourselves and our body represents the source of our fear. For many of us, especially, but not solely those of us living with secondary breast cancer, the threat of recurrence and progression of disease is ongoing and very real. It is not something we can put behind us and our survival may depend upon our ability to be vigilant to symptoms which we need to report to our doctors.

Like it or not, we continue to take our cancer forward with us.

Very few of us had been able to share our feelings with our loved ones, partly because we did not want to worry them; because in our gratitude to be alive, we felt we could not share our contradictory feelings, or we felt under pressure to 'move on' and 'put cancer behind us.'

Naz told us that it is possible to manage and regulate PTSD, but our brains will not be working with us to eradicate it because of the way they have evolved to ensure our survival. We can, however, build our cognitive strength towards resilience. This can then help us to regulate our responses over time, strengthening connectivity networks in our brains. Naz explained that there is much scope for understanding and managing PTSD through understanding the cognitive functions behind our emotions.

In terms of psychological support, some of us reported really positive experiences in terms of accessing psychological support in a timely manner which was flexible enough to meet our needs. However, most of us felt cast adrift and either had limited support or we had found sources of support ourselves. Most of us had not even been told about our potential psychological vulnerabilities.

What helped?
We shared that counselling, CBT, mindfulness, yoga and in some instances, medication, had all helped. Opportunities to talk and share as a group were invaluable because they both validate and normalize our responses - we could say 'What you too?' and breathe a sigh of relief we are not alone.


Many thanks to Claire for allowing us to use this beautiful photograph.

Thursday 12 January 2017

Weekly Discussion Summary ~ Coping with Caring

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As a group, our caring responsibilities were diverse, reflecting our individual circumstances, for instance, some of us were caring for elderly parents, others had dependent children (both young and adult) with additional needs, or partners with their own significant and long-term health needs.

It was clear that the implications of 'caring' go way beyond looking after a loved one who is ill. The most challenging circumstances appeared to be when a family member experienced their own struggles, including their physical and mental health, and are very dependent upon us. For some of us, especially those with secondary breast cancer, and those of us managing ongoing health difficulties, adopting a position of acceptance, seemed the only - and best - way forward. Acceptance is relative though, as we have a varying ability to influence the way we can shape our near and distant futures.

Naz emphasised that when we are confronted with the role of caring for a significant other, it is inevitable that we need more emotional and physical support, because we implicitly tend to put our needs second, and focus our energy on our loved one. The accumulative effect on us of meeting these needs can be draining, even if we are caring for people we care deeply about, and increases our vulnerability.

Naz also explained that there is research to show that vulnerable carers are at most risk of developing clinical conditions, even though they may find it rewarding to look after their loved ones. Even more challenging is how this relationship sits with the outside world, especially at times of celebrations, including Christmas, when we are encouraged, as one of our members put it so eloquently, to 'see the world through rose tinted glasses' and yet our reality may feel very different.

As carers, our balance shifts and we can end up undermining any new hopes and initiatives in favour of our altruistic passion to care for those dependent on us, a problem that is exaggerated if the person we care for is in our immediate family.

It was apparent from the huge responsibilities described by our members that carers need more recognition and support. We heard stories of love, strength and resourcefulness from women supporting and caring for others, while quietly and privately dealing with their own struggles. As carers, we are in need of more attention, comfort and resilience and while in reality this can feel immensely difficult, we shared that creating even small spaces to nurture ourselves as well as being able to share our feelings with others was incredibly helpful.


Many thanks to Diane for allowing us to use this wonderful photograph

Sunday 8 January 2017

My Past, Please Welcome My Future ~ Naz ~ HuffPost Blog

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The latest blog by Naz, Director of The Centre for Building Psychological Resilience in Breast Cancer, published on HuffPost UK The Blog.

"To be able to remember the past is one of the most amazing functions of the brain. Without it, we would not be able to learn, to plan, to reflect, to correct and to grow. Thinking of pleasant memories gives us warmth and encouragement for the future. But what about the memories that are upsetting and painful? Should we try and forget them to protect ourselves from the pain and trauma? Can they hold us back from moving towards a better future?"

Find out here:

Tuesday 3 January 2017

Weekly Discussion Summary ~ Hopes for the New Year

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The beginning of a new year is a time for reflection, and as women living with a diagnosis of breast cancer, thinking about the year ahead can remind us of our vulnerability, though our fears may be unspoken and we also find ourselves wondering what we can aspire to, our dreams, our hopes and what we want to achieve in the coming year.

For some of us, the future is anxiety-provoking and when we try to be hopeful and think of all the amazing things that could happen, the picture before us becomes blurred and we find ourselves wondering whether we dare to dream. For those of us living with secondary breast cancer, the over-riding hope is for stability in our health, for treatments which continue to keep disease in check, and a sense that the here-and-now is what matters most to us. Some of us shared our dreams to make career-changes, travel, celebrate significant milestones, support our loved ones, take up new interests and give something back to our communities.

For women living beyond the most active phases of treatment (surgery/chemotherapy/radiotherapy), there can be a huge impetus to treat cancer as an event we can put behind us. Naz told us that the past prepares us for the future and gives us the solid foundation in which we can build resilience, a spring board to fly from. To forget the past is to break that foundation, but if we can use it to our advantage, we can make the future an achievement.

Our debate highlighted our rich and varied hopes and reflected our individual interests and aspirations, but what we had in common was our wish to live our lives meaningfully, according to our values, and yes, for some of us our steps forward are faltering and uncertain, but forwards we must go, with curiosity, with love and with hope.


Many thanks to Sally for allowing us to use this photograph.