Weekly Discussion Summary ~ Finding the New Me

In this week's discussion we explored the ‘positives’ and ‘negatives’ of living with cancer and its effects and the challenges of understanding the ‘new’ me.

Naz began by asking some challenging questions:
Should the cancer have changed me? For the worse AND better? 
What should my ‘profile’ look like? Stronger? Weaker? Both? 
If both, then how can weak and strong live together in harmony?

Naz explained the huge role working memory plays in our everyday lives and how our responses to cancer can lead to cognitive interference as our working memory is dominated by our vigilance. She believes we need to build resilience. This allows us to develop cognitive flexibility by finding a lightness within our fear and sadness. Bringing together the 'good' and the 'bad' can lead to a new normal which can be special and complete. 

Our responses were diverse: some spoke of physical challenges, and our points of view were partly shaped by whether we were recently diagnosed, living with 'no evidence of disease' or whether we had a secondary diagnosis. We agreed that whether we like it or not, we are not the same, we have changed bodies and feel different. Some of us described feeling comfortable with our new selves. Some of us feel anxiety and fear, a sense of loss and grief for the person we once were. Many of us described seeking new opportunities and discovering a new zest for life, even while experiencing sadness and loss. 

While we could acknowledge that we are different, accepting our new selves is another matter. Many of us experience fatigue, but are reluctant to admit our physical struggles as we don’t want to appear weak, especially at work. The fear of recurrence is strong, but can also be a driver for positive change leading us to adopt a 'can do’ attitude. Many harness this to make life changes, and others say they’ve stopped planning for retirement, preferring to live life now, spending more freely to enjoy the experience of being alive and taking more pleasure in the everyday. 

Some of us look back and cannot relate to who they were before cancer, we are perhaps more emotional, sensitive and empathetic now. Some days we find ourselves grieving for our old selves, we feel lost and want to hide away. Some days we feel strong, we can take on the world. The challenge of being on this rollercoaster is to bring these extremes into balance. 

We learn from cancer that we need to live now. As one member put it: ’The old me was worried about getting old, the new me is scared she won’t get to.’ 

Our overall discussion concluded we are undoubtedly changed. We are weak, AND we are strong. We are darkness AND we are light. We are sad AND we are joyful. 

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

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A big thank you to Jo for allowing us to share this beautiful image of bluebells.

Guilt

Naz introduced guilt (and shame) as self-conscious, negative emotions that are directed at the self, which involve being critical, ashamed, and self-depreciating. Often, the anger is self-directed. In the context of trauma, guilt and shame have been extensively studied in relation to childhood abuse as well as more recently in the context of ‘survivor’s guilt’ post trauma, for example accidents, war, casualties, and cancer. A link below takes you to a paper that reviews research on guilt and shame quite nicely.

Naz found little research carried out on guilt in the context of cancer, but because guilt and shame are known to be risk markers for depression, they have been studied implicitly in depression. With the exception of a couple of studies, there is hardly any evidence related to 'guilt' in breast cancer – she found an interesting, which is not research based, and a link to that is also provided below.

Our common experience of feeling guilty manifested itself in myriad ways - from that first diagnosis when we ask why me? And - what did I do wrong? Our long list of guilty feelings poured out: why didn’t I find my cancer earlier? How awful we had found it to share the burden of our illness with our loved ones, causing them anguish and worry. Then for those of us who have come out the other side of treatment, there’s survivor’s guilt – why am I doing ok when another didn’t make it? Those of us with secondary breast cancer feel a sense of guilt about the impact of our illness on our children, including the painful knowledge that we might not be able to support and guide them into adulthood. Those of us with faulty genes shared our guilt about finding out, the worry that relatives may have the gene too and whether we’ve passed the fault on to our children.

Catholic guilt was mentioned and a deeply ingrained sense of responsibility for getting cancer. Then, of course there’s our work – we feel we let down our employers, our colleagues. We are continually apologising to everyone around us for having cancer. Our guilt spreads to the everyday stuff - that we don’t feel well enough to get everything done that we used to do, that we have to ask for help, that others have to care for our children, that we can’t exercise as much as we used to, that we can’t eat as well as we’d like to, because we don’t have the energy to cook, that we can’t engage fully with all the social events going on around us, that we have to pace ourselves, rest and relax (we are lazy, is how we unhelpfully see it.) The list goes on and on.......

But as our list grew, some of us began counteracting with questions, suggesting to one another that we had no need to take on so much guilt, and with this came the realisation that we are full of good advice for others, but reluctant - or find it difficult - to listen to ourselves.

And then came the voice of reason: ‘Why is guilt an acceptable emotion and others not?... I think that guilt is a harsh emotion to inflict on yourself just to make others feel better. Other people's emotions are their responsibility - don't make them yours.’ This point made a real impact on many of us, and brought us back to the negative futility of the guilt. Some of us shared that we don’t feel guilty, we know that getting cancer isn’t our fault, we didn’t do anything to deserve it, it’s just the hand we’ve been dealt with in life.

Naz questioned whether guilt serves a purpose, whether it can have a useful function in some cases? Our discussion came up with no easy answers, and our conclusions perhaps were more around how we can be resilient about our feelings in general – our anger, our sadness, our frustration, our sense of unfairness, our regret. We wondered whether embracing these emotions night allow us to be more truly be in touch with ourselves and to reframe our guilt. We often talk about self-compassion in our group, and this discussion highlighted once again how hard we can be on ourselves and that if we are kinder to ourselves, perhaps we can stop wasting so much of our precious energy on feeling guilty. Our discussion concluded with a powerful reminder that we are strong, powerful, vibrant, passionate women with rich and full lives.

This week our discussion explored our guilt and the sense of responsibility we feel for the worry and pain our loved ones experience as a result of our diagnosis with primary, or secondary, breast cancer.

Guilt can be one of the strongest emotions we experience - we feel guilty for bringing this disease into the lives of our families and its impact on our husbands, our partners, our parents, our colleagues, our employers. We feel guilty for exposing our families and friends to worry, fear and uncertainty. Those of us who are mothers are haunted by our sense of having allowed an unspeakable horror into our children’s lives; those of us who want to be mothers feel guilty that we may be unable to give our partners a family.

 

Some of us described feeling as though we had failed our loved ones in some way. Rationally, we know we are not to ‘blame’ but we can’t help but wonder what it was we did, or did not do, that might have caused us to develop breast cancer. We find ourselves questioning our life-style choices, our experiences and asking whether they could have contributed to our diagnoses. The questions that follow us are: why me? why not me? where did I go wrong? did I bring this on myself? Is this a punishment? We find ourselves taking on responsibility for developing primary breast cancer, for facing side-effects and complications, and if our cancer returns, for developing secondary breast cancer.

 

Naz explained that we are not as well-equipped to cope with guilt as other emotions. This is because guilt carries with it a strong emotional and cognitive component that justifies this emotion. Usually, our cognitive brain systems regulate or down play emotions that run high, but with guilt, our cognitive systems often serve to re-affirm our guilty feelings. This is one of the main reasons that feelings of guilt can last for a long time - for years post trauma.

 

Unwittingly, the expectations and reactions of others can re-affirm our guilty feelings. We are advised to - ‘stay strong’, ‘be positive’, ‘your family needs you’, ‘you need to keep going because of them.’ But often we don’t feel positive or strong and these 'sympathetic' comments increase our guilty feelings, we feel we shouldn’t complain, we are supposed to feel ‘lucky’ - because we have a ‘good cancer’, because we didn’t need chemotherapy, or radiotherapy, or haven’t had a mastectomy.

 

The media, we decided, plays a role in exaggerating these unrealistic expectations: are you strong enough? Brave enough? Tough enough? to ‘battle cancer.’ Women with secondary breast cancer described their emotional anguish as a result of the unspoken, offensive subtext that accompanies these messages - that they were somehow not strong enough or brave enough to stop their cancer coming back. The reality is that our power in influencing cancer outcomes and recurrence is very limited. So we feel doomed to failure. Yet we suffer in silence, unable to talk openly about the realities of secondary breast cancer.

 

Those of who have finished active treatment described how we want to meet the high expectations that we and others hold of ourselves. But we are exhausted, thrown into an ocean of uncertainty, trying to find a safe harbour to shelter from the storm of cancer which can be a long and turbulent. We want others to understand, to empathise, but we find ourselves mute and numb, unable to communicate how we feel and what we are going through. Some of us described feeling ‘survivors’ guilt’ when we have lost friends as a result of breast cancer.

 

So can guilt ever be made to disappear?

 

We can try to prioritise our own needs. We can share our vulnerability so that others see our interior experience as well as the tough image that we project outwardly. We can remind ourselves that we have very little control in the development of this disease. We can forgive ourselves.

Link to the review paper: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3083636/

Link to the Huffpost article: http://www.huffingtonpost.co.uk/laura-price/coping-with-cancers-ugly-sister-guilt_b_2060752.html

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

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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