Weekly Discussion Summary ~ Diet and Breast Cancer

The subject of our weekly discussion was 'Diet and Breast Cancer.'

Diet can be contentious issue and there are diverse and varying views on the role of diet, both in the prevention, and treatment of cancer.

We considered the reasons why diet is such a popular topic in discussion, not only in relation to breast cancer, but 'cancer' as a whole:

Naz suggested that firstly, we can control what we eat and this is very important because cancer and its treatment completely undermines our sense of control over our bodies and lives, in particular the little control we have over breast cancer occurrence and recurrence. Yet, we can choose what foods to eat and what to avoid and this allows us to exert a sense of control, empowering us at a time when we feel extremely vulnerable. 

Secondly, our diet interacts with our physical and psychological well-being, influences hormones, cognitive function, and most of our organs, including the brain. So, it is perfectly reasonable to think that diet can have a direct effect on cancer diagnosis and progression. 

However, Naz told us it has been very difficult to substantiate a direct and causal influence of diet on cancer diagnosis and/or cure because the way in which diet affects individuals so differently, depending on our genetic make-up and environment. At a molecular level it is easy to substantiate with much certainty the effects of certain foods on physical well-being, but, when it comes to epidemiological research, it is hard to derive conclusive results because of history, natural variation in physical make-up as well as environmental experiences and influences. 

This mixed approach leaves us in a confusing position. Most of us would like to believe that good nutrition will help us, however, there is often a lack of clarity and agreement over what constitutes 'good' nutrition.

There was an extremely wide wide variation in our views as a group - some of us follow a vegan diet, others, a ketogenic diet, others avoided dairy products or foods associated with oestrogen. Individual members reported significant improvements in their health and well-being, including a reduction in tumour size as a result of changes made to diet, even though different diets were followed. Weight gain - and loss - as well as fatigue due to treatment was a consideration, impacting on our confidence and self-esteem and we also talked about our views on alcohol. However, our over-riding concern was how we could support our health and well-being while enjoying a quality of life, given the challenges we face, impacted by our unique experiences and perspectives.

We considered that irrespective of cancer, the 'food industry' is loaded with media claims advertising foods, including both specialised diets and therapies. Naz explained that while there is no substantiated evidence to back up the use of specialized or alternative diets, there are anomalies in traditional medicine, even though this is the predominant and scientifically accepted approach. Naz suggested that the absence of evidence does not mean evidence of absence. 

As a group, we were able to respect each other’s diverse views. We considered that given that as we currently do not know the effect of diet on cancer prevention and cure, it seems reasonable that we support one another to have the confidence to act on our own informed views about what each of us considers the best way we can support our physical and psychological well-being.

If you are a woman living in the UK with a breast cancer diagnosis, and you would like to join our private members group, please message us on our public page: https://www.facebook.com/resilienceinbreastcancer/?ref=aymt_homepage_panel

#ResilienceDiscussion

Weekly Discussion Summary ~ Self-Compassion

This week our discussion focussed on the concept of self-compassion and its effects on our well-being.

Naz explained that self-compassion, like post traumatic growth, is a relatively new concept, but one that has been researched in relation to its protective effects against anxiety and depression. Engaging in activities that promote self-compassion have been shown to correlate negatively with depressive and anxiety related symptomatology - this means that the more self-compassionate we are, the less likely we are to experience anxiety and depression.

Naz told us that the definition of self-compassion used in research identifies the following three elements:
i) “self-kindness (versus self-judgement);
ii) mindful awareness of one’s emotions (versus over-identification), and; 
iii) understanding the universality of human suffering (versus isolation of self)”.

As a group, we intuitively understood self-compassion as being kind to ourselves, putting ourselves first and doing things that make us feel good (point i). Almost all of us were able to share examples of the way we were practicing greater self-compassion, for instance putting our own needs first, doing things that made us happy and consciously choosing to 'treat' ourselves. For some of us, being kind to ourselves meant forgiving ourselves for if we needed to cancel plans at short notice (when perhaps we had been brought up to prioritise social obligations), giving up our previous strivings to be 'perfect', accepting our limitations, as well as accepting that we might never understand why we had developed breast cancer.

Points ii) and iii) above bring a more fruitful meaning to self-compassion, allowing us to be in tune with our emotions and to understand human suffering in others. Some of the group shared their learning with us, whether this was through counselling, taking part in a mindfulness course, or using the Headspace app. Some of us shared that we found it incredibly hard to feel self-compassionate, and that our experience of breast cancer fed painfully into our low self-esteem, sometimes, but not always linked to our previous experiences. However, we all felt that we could consciously practice self-compassion, perhaps through positive self-affirmation. Those of us who found mindfulness helpful described having learned to be able to stand back from their thoughts and feelings, recognising that they are just thoughts, and not our reality.

Naz told us about recent research showing that self-compassion can reduce feelings of distress in women with a breast cancer diagnosis and women who practiced self-compassion were less distressed and felt more confident about their body image. While the research predominantly looked at how self-compassion relates to negative feelings about body image, it does talk about how self-compassion can act as a buffer against distress and help boost self-confidence.

Several members recommended 'The compassionate approach to recovering from trauma using compassion focussed therapy' - Deborah Lee and 'The mindful path to compassion' - Christopher Germer, as well as this website:

http://self-compassion.org/

Our a private psycho-educational group offers women with a breast cancer diagnosis a safe space to share their feelings. If you would like to join, please message us on our public Centre for Building Resilience in Breast Cancer

#ResilienceDiscussion

Many thanks to Anita for allowing us to use this beautiful image, calling to mind summer days and sunshine!

Celebrating Unity, Embracing Diversity on World Cancer Day 2017 ~ Naz

Celebrating Unity, Embracing Diversity

The Centre for Building Resilience in Breast Cancer is almost 15 months old. Born in October 2015, we are proud to be celebrating our second World Cancer Day. Last year, on this day, we launched our blog, Panning for Gold, showcasing the colourful experiences of trauma and resilience of numerous women living with breast cancer and its effects; the roller coasters of joy and sadness, of elation and despair, of uncertainty and living with fear, of learning to be courageous and flexible.

Only 15 months old, the centre is rapidly expanding with over 2000 followers already. Our private psycho-educational support group, inclusive of just under 600 members, expands on a daily basis.
Our aims are translational and educational: to understand the complex roots of anxiety and depressive vulnerability in breast cancer and promote resilience using newly developed scientific research.

As a cognitive and affective neuroscientist working on emotional vulnerability and resilience for nearly 20 years, and having suffered breast cancer myself, I remain more determined than ever to bring new insights into the emotional and psychological needs of women living with breast cancer and its effects, promoting mental well-being and psychological flexibility in a population most need of being empowered through resilience.

Up to 80% of women with a breast cancer diagnosis continue to experience post traumatic stress symptoms for years post diagnosis, with depression and anxiety impacting health and well-being significantly. The statistics show that around 60,000 women are diagnosed yearly with breast cancer in the UK alone, with increasing rates in younger women noted and around 30% of us go on to develop secondary breast cancer. Addressing the unique needs of women with breast cancer is a both an individual and societal necessity.

What is the unique feature of the centre?

At its forefront, our aim is that the centre will unite the many diversities and segregations seen in breast cancer research and practice. We see primary and secondary breast cancer, not as separate entities, but on a continuum where the understanding of both the common and specialised needs of each can inform the other. Secondary breast cancer receives little attention for funding, but these women continue to live rich and fruitful lives, contributing to their families and society and it is imperative that their psychological needs are met and their voices heard. My aim is that the centre provides a public platform to educate through research the ways by which we can manage the cancer-related emotional vulnerability that we take forward with us, and practice resilience, given our limitations.

Our educational support group provides a unique and integrative platform for women of all ages and at all stages of the continuum. Our Sunday discussions are guided, referring to research and theory, mixed with the sharing of emotions and experiences that are both common and unique sensitivities.

Promoting resilience is at the forefront of our mission. Research shows that psychological flexibility towards resilience can be achieved through talking about and embracing our anxieties, fears and sadness. Attending to the ‘negative’ can facilitate our experiences of ‘positive’. We research the ways by which we can manage our fears and worries, and not simply hide away from them. Our women promote the practice of gratitude, grit and solidarity.

Today, we are about holding hands, embracing our diversity and celebrating our unity.

Thank you to all our amazing members and followers for your support.

Nazanin Derakshan

World Cancer Day ~ 4th February 2017

4 February is World Cancer Day. It is a day when cancer charities come together to unite to show support, raise awareness and vital funds for life saving research. On this same day last year, we launched our blog, Panning for Gold, with the aim of providing an inclusive platform representing the many voices of women with a breast cancer diagnosis, a space not only for sharing our stories, but for listening and, by listening, to bear witness, and begin to heal.

Panning for Gold has featured women from all walks of life, highlighting the rich and diverse ways we express our resilience, including a model, a runner, a poet, artists, a photographer, a song, ducks, Buddhists and big pants. We learned that even though not all stories end with the words ‘happily ever after', we go on.

Our theme for World Cancer Day 2017 is Celebrating Unity, Embracing Diversity. We will be marking the occasion with a post from Naz looking back on the progress of the Centre over the last 15 months, and by re-posting a selection of blogs from Panning for Gold.

Our a private psycho-educational group offers women with a breast cancer diagnosis a safe space to share their feelings. If you would like to join, please message us here.

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

Here is an example of the variety of blogs we have published over the past year:

Jan

We were deeply saddened by the news that Jan passed away earlier in January this year. Jan, one of our first members, was a true icon of resilience, the heart and soul of our group. Passionate, kind, caring, bold and beautiful, Jan brought style and glamour with her everywhere she went, even in the most clinical of hospital environments.

Hard as it is to read Jan's words, we wanted to share her blog, 'Learning to live with Metastatic Breast Cancer', which she wrote for our month long feature #pathways2resilience:

http://bcresiliencecentre.blogspot.co.uk/…/day-16-pathways2…

Jan was resilient and versatile, even in the dark cloud of adversity that at times covered her thoughts, her heart and her vision. Jan, you were strong, you were brave and beautiful and we were incredibly lucky to know you, to be some of your 'pink ladies,' who we know, meant the world to you. We miss you and are thinking of your beloved George, and your family and friends, always so precious to you.

Kirsty

Today is #WorldCancerDay and to mark the occasion, we are sharing this amazing blog, "Cancer gave me a voice I never had" by Kirsty.

Kirsty was 33 when she was diagnosed with aggressive breast cancer. Her tumour was 12cm a few months before her wedding. Utterly devastated, she became determined to make herself heard. Inspired by the contributions of younger women affected by breast cancer she started to work with Coppafeel to raise breast checking awareness. She is also an active advocate and adviser to women's lingerie specialising in bras for women who've had mastectomies. Here, Kirsty showcases her passion for photography. Her pictures have made our our hearts melt.

http://bcresiliencecentre.blogspot.co.uk/…/cancer-gave-me-v…

https://www.facebook.com/KWardPhotographer/

Amanda

"Art enables us to find ourselves and lose ourselves at the same time" ~ Thomas Merton

We are thrilled and delighted to re-share this blog, 'I am Now an Artist with Cancer', written by our favourite artist Amanda for #WorldCancerDay

Amanda is an example of the many women who blissfully tried to move on with their life post cancer treatment, to find out 9 years later that the breast cancer was back, this time in her lungs. She shares how living on borrowed time meant she had to make large adjustments to her life, and one of them was to abandon her hopes of becoming a professional photographer. What she decided to do defines her life every day with meaning, purpose and reward. Amanda turned to art, a subject she was passionate about but not 'an expert' as she puts it.

Amanda started experimenting with art, everywhere, at home, at work, in the doctor's surgery, with her dining room finally taking over her art work. She says: My remaining life is more full-filling now. Amanda's art is now amongst the most well-received widely. Her passion and love for the subject can be seen through the delicate and moving drawings and colourful experiences she depicts. Read her story below.

We are in love with your art Amanda!

http://bcresiliencecentre.blogspot.co.uk/…/i-am-now-an-arti…

https://www.facebook.com/madlittleartist/

Weekly Discussion Summary ~ Post Traumatic Growth (PTG)

What does it mean to grow from trauma?

We tend to associate 'trauma' with negative and upsetting experiences, but post traumatic growth, which Naz told us is a relatively new concept in the psychology literature, is about 'growing' in 'positive' ways from the trauma that we have endured, for instance, re-evaluating our priorities, goals, values, and holding a deep gratitude and appreciation for life.

As a group, our experiences were diverse, including many women with primary breast cancer and recurrence as well as some women with secondary breast cancer. Many of us had finished our active treatment although some of us were still undergoing treatment for primary and secondary breast cancer.

Many of us described the way our lives had changed positively as a result of having breast cancer, for example, identifying either 'ourselves' or 'our lives' as being 'better', 'richer' and more meaningful. Others were more cautious, acknowledging both gains and losses, but overall there was broad agreement that we had discovered a new and deeper appreciation for simple pleasures we may have taken for granted before our diagnosis, whether this was delicious meals, the sight of the bright sun, or dappled light on the forest floor.

Many of us shared that we had reconnected with our values, for instance perhaps having a greater appreciation for 'normal life', home and family, whilst others had experienced a shift in values, perhaps becoming more willing to take risks, be more adventurous and open themselves up to new experiences, doing new things, perhaps that they had never before had the courage to do.

We asked ourselves whether our insights had changed for the better due to the trauma that we had experienced and whether we now found more meaning in life?

The answers to these questions were broadly 'yes' - we felt we were kinder, more compassionate, wiser and empathetic. Some of us described having learned to put ourselves first, becoming more assertive, more confident and gave examples of setting boundaries in stressful work environments, or changing and leaving jobs. Some of us had developed new interests and skills; found ourselves wanting to learn and study or had found ways to express our creativity, perhaps through writing, painting, or taking up mindfulness. Friendship and the chance to make new friends was highlighted as an opportunity for both growth and pleasure.

Stephen Joseph, a Professor of Psychology at the University of Nottingham, makes this point:

‘Those who try to put their lives back together exactly as they were, remain fractured and vulnerable. But those who accept the breakage and build themselves anew become more resilient and open to new ways of living’.

We thought that this was a compelling idea, but we also wondered how we can achieve post traumatic growth - 'build themselves anew' implies having the resources, strength and courage to put the building blocks together towards resilience to make this happen. Where do we find these resources from? Could we be placing unrealistic expectations on ourselves to 'grow' and learn from trauma? Especially when we consider that one of the conclusions of last week's discussion was that we take our cancer forward, continuing to live with trauma, our brains are on high alert, vigilant for signs, symptoms, and we are tired, fatigued, and our cognitive functions running low on fuel. These issues as well as the ongoing challenges facing our members with secondary breast cancer is especially pertinent, requiring considerable efforts and energy to manage.

Naz wondered whether post traumatic growth might help make our journey easier. Should we develop a blanket definition that applies to everyone, or can we have our own individual patterns of growth? It would be a challenge to quantify post traumatic growth - how can we measure it and its impact on the changes that it brings about in us?

Naz told us that expressive talking about cancer and related fears has been found to be key in determining the extent and sustainability of post traumatic growth. She also told us about other work which has shown that expressive talking about our fears and threats can boost cognitive function in positive ways, which seems necessary to, as Joseph puts it, 'build ourselves anew'.

Joseph suggests that we can nurture our capacity to grow by asking ourselves these questions:

'Are there ways in which my relationships with family and friends have been strengthened and deepened in intimacy?

Are there ways in which I have found a different perspective on life with new opportunities?

Are there things I did to survive what happened that showed me strengths within myself that I didn’t know I had?

Are there ways in which I have found a greater understanding of life and how to live it?

Are there ways in which I find myself being more grateful for what I have and for those around me?'

http://www.huffingtonpost.com/stephen-joseph/what-doesnt-kill-us-post_b_2862726.html

#ResilienceDiscussion

Weekly Discussion Summary ~ Coping at Work

Summary of our weekly group discussion ~ 19^th January 2017

COPING AT WORK FOLLOWING A BREAST CANCER DIAGNOSIS

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.

#ResilienceDiscussion

Post Traumatic Stress Disorder and Breast Cancer (PTSD)

Some evidence* suggests that nearly 80% of women with a breast cancer diagnosis experienced PTSD for at least one year after their diagnosis.

As a network, our experiences are 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 have 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 has mentioned 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 has 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 several 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 has 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, as well as other breast cancer patients in various stages of illness or treatment. 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 our selves 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.'

According to Naz 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 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 can help?

We shared that counselling, CBT, mindfulness, yoga and in some instances, medication, haveall 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.

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*Brief summary: http://www.breastcancer.org/research-news/many-women-have-ptsd-symptoms-after-dx