October 2017 Breast Cancer Awareness Month project #pathways2resilience

"Bouncing Forward with Resilience"

I'm thrilled and delighted to share our October project, #pathways2resilience which highlights and celebrates the different ways women practice resilience in their daily lives.
Every day, we will be sharing some of the many faces of resilience of women with primary and secondary breast cancer, who will be describing in ten words or less, what resilience means to them, with grit, courage, tears, hope and love.

As a Professor of Experimental Psychopathology and cognitive neuroscientist, specialising in the neurocognitive mechanisms behind anxiety, depressive vulnerability and resilience at Birkbeck University of London, when I was diagnosed with breast cancer myself, I became determined to use my experience to help women overcome the psychological impact of breast cancer.

Recent research describes resilience in terms of elasticity, and flexibility, the ability by which we can adapt in the face of hardship. Neuroscience has discovered that the brain is plastic and so it can be trained to become resilient. It can learn to become resilient. Neural connections can be strengthened and new pathways can be formed to place us firmly on the road to resilience. Importantly resilience is a dynamic process so its precise measurement should involve the trajectory of time.

I founded the The BRiC Centre less than two years ago with this mission in mind: To build building blocks of resilience in women with breast cancer. Women who are mothers, wives, partners, and sisters. Women who are teachers, doctors, and hold many responsible posts in society. Women who are left highly vulnerable after diagnosis, a vulnerability that impairs emotional and cognitive health increasing anxiety and depression as well as PTSD for years post diagnosis. Women whose fear of recurrence constitutes a major vulnerability interfering with daily life, reducing cognitive efficiency. These women are keen to improve their well-being and to live meaningful lives.

We have more than 3000 followers so far and our private educational support group has more than 1060 UK members. I'm so proud of my two deputies Vicky and Tamsin as well as our amazing ambassadors, Anita, Caroline, Jan and Jenny. Importantly, the stories of these women show how resilience is helping them bounce forward in life.

Follow our October project: #pathways2resilience to hear them.

Naz x

                        

 

   

 

"Making every day a good day, living for the moment."

As #BreastCancerAwarenessMonth comes to an end, we are reflecting back on the extraordinarily rich and varied ways that the 64 women who featured in our #pathways2resilience project practice their resilience. These incredible women, living with primary and secondary breast cancer, are the 1 in 8 women who hear at some point in their lives that they have breast cancer.

We are the real women behind the statistics. We are not 'patients,' we are mothers, daughters, sisters, partners and friends. We are all women everywhere.

We leave the final words for Rachel, an icon of resilience. #pathways2resilience #BreastCancerAwarenessMonth

Weekly Discussion Summary ~ Anger 2

Summary of our weekly group discussion ~

ANGER 2

Can we talk about anger?

The eyes widen and the cheeks flush. The lips quiver, muscles swell and we are suddenly filled with a violent urge to destroy something..........

This is not Bruce Banner transforming into the Incredible Hulk but a description of anger written by the Roman philosopher Seneca, still as vivid today, here in the twenty-first century.* Anger, we learned in our weekly discussion, is one of six basic universal emotions experienced similarly across cultures, although the way we express anger is influenced by our upbringing and culture. Anger is a natural response to feeling attacked, deceived or being treated unfairly. Naz told us that we commonly experience anger when our goals are threatened and as one of the most basic human goals is to live and to survive, it's hardly surprising that some of us experience high levels of anger when we are diagnosed with a life-threatening disease.

But how many of us with a diagnosis of primary or secondary breast cancer feel able to express our anger?

For many of us, social expectations and our gratitude at being given 'a second chance' can get in the way of us feeling that we can admit to having or sharing our feelings of anger. Instead, we are more inclined to focus on our gratitude, like feeling blessed that our treatment is finished or is continuing to work. We instinctively feel that our families and friends (already burdened enough) do not want to hear that we might be angry we got cancer, that we experience insomnia, hot-flushes or weight gain - all of which might turn even the stoical Seneca into a raging Hulk! Add in the occasional lack of empathy and understanding of a friend, a rude colleague, unrealistic expectations or insensitivity and it's not really surprising that we become irritable or our temper is frayed.

Anger is an unruly emotion, it can be unpredictable, frightening and makes us feel dangerously close to being 'out of control'. Anger, often described as a 'negative' emotion, poses a threat both to the person experiencing it, and the person who is confronted by it. Not surprisingly, it can be an emotion we prefer to avoid expressing.

Attitudes to anger are complex, for example, some might argue that anger is a socially unacceptable emotion (think about ‘anger management courses’ targeted at those who have ‘difficulty’ controlling their rages). Additionally, in our society there is a commonly-held view that it is more acceptable for men to show anger than women. Yet some of us in the group shared how we channelled our great anger into a force for good, for example about the lack of support or inequalities in treatment, into campaigning for change.

Some of us directed our anger inwardly, at ourselves. For others anger was directed outwards at those around us, sometimes explosively, perhaps warning us that we were at the limit of what we could manage, that we are still in a process of adjusting; are coming to terms with losses and face ongoing challenges. While anger is considered a short-lived emotion (unlike grief for example), it can lead to sadness and frustration, or even depression, if it is avoided at large costs.

Here is a link to a recent news story that is a good read: http://www.bbc.co.uk/news/health-40900811?SThisFB

*Taken from The Book of Human Emotions, Tiffany Watt Smith

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 contact is by facebook message https://www.facebook.com/resilienceinbreastcancer/

#ResilienceDiscussion

Weekly Discussion Summary ~ Body Image

Reflections via the mirror

Our Sunday discussion this week focused on body image, and particularly weight gain.

Breast cancer robs us of our womanhood. Treatment gives us a changed body, and a troubled mind. That mind may have problems accepting the new body, where has our femininity gone? We may have artificial breasts, a flat chest, uneven breasts, deformed breasts. Hormone treatments remove the substances that our body needs for libido to function. What chance do we have of a normal sex life if we feel let down by our bodies, somehow less of a woman, physically unattractive and mentally scarred.  Many women report being unhappy with their looks and dissatisfied with their intimate lives.

Weight gain is common due to the drug regime used to treat cancer and often continues for many years post active treatment.The inactivity enforced during treatment and recovery also contributes. When we are able to exercise again our bodies are storing fat, and we struggle to shed the pounds even with very careful healthy eating. 

For those who lose their hair during treatment there is another blow to womanhood, and for many it doesn't grow back afterwards like it was before. Menopausal symptoms such as hot flushes add to feeling unfit and unglamorous. 

Our members have both primary and secondary diagnoses, and our medical teams may tell us that reaching and maintaining a healthy weight may be beneficial in keeping the disease at bay and in preventing progression in secondaries. This means we become more unhappy and perhaps fearful if we are overweight.

We find ourselves envious of women who show off their cleavage. We mourn the loss of the woman we were before breast cancer so cruelly changed us. This takes a huge toll on our wellbeing and self-confidence.

We are strong proud women, and every day we cope, and very often excel, in the face of these and many other challenges. We shower and show up, some of us wear make-up, we find clothes that flatter as well as being comfortable. We find new ways to be in our relationships, sometimes we move on to someone new, sometimes we find solace in a long standing partner who helps us to get through it. Even though many of us confess to hating our bodies, we are living our lives as best we can. 

What we see in the mirror may not please us, how we feel may not please us. However, we keep on, we don't give up or give in.

Weekly Discussion Summary ~ Stepping stones towards resilience

Our Sunday discussion this week centred around small practical steps that our women have taken to build their resilience. Naz introduced the topic with her science hat on, reminding us that our brains have the capability to build new neural pathways which may help us to become more emotionally resilient. Whilst of course our bodies need time and nurture to heal, our brains may benefit from challenges which allow neuroplasticity to support our growing emotional strength. We need goals in order to move forward in life.

Some women reported not wanting to set long term goals since their breast cancer diagnosis (we have members with both primary and secondary diagnoses) but without exception our women reflect on where and how they want to be, and take steps to make things happen. Some days, when we're struggling physically, it's a huge challenge just to get out of bed. On other days we can climb mountains and run marathons, but not without physical and mental training and preparation. We can't just turn up at the start line expecting to complete the course. 

Our women employ a variety of strategies to move forward following the major disease that is breast cancer. The trick seems to be a mixture of self-compassion and breaking free of our comfort zones. The theme of appreciating the simple everyday things in life came through very strongly, alongside not sweating the small stuff. We can't avoid stress completely but we can choose not to let things that don't really matter get to us.

Having a go at something new is key for many of our members, from singing and dancing to crafting and studying. Finding what makes us happy by going out and having a go, and then doing more of the things that bring us joy, is a well-established method of improving wellbeing. For those who have busy working lives and families to look after it's important to achieve some balance, with many citing daily walking (some with dogs) as key to their emotional and physical health. Resting is a huge priority for our members, and many have learnt to listen to their bodies and take it easy when they need to (though many also have a way to go on this one as we strive to look after everyone around us!)

The everyday can still be challenging for us as we recover our health or work to maintain it. Music keeps us calm, uplifts us or soothes us. Exercise feeds both mind and body. Many have used mindfulness and breathing exercises to good effect. We all need things to look forward to so booking ahead for little or large treats provides these. Everyday treats are also key for many, as we want to enjoy our lives not just live them. We treasure a smile from a child, a sunny day, a refreshing shower, a light traffic commute, a lunchtime walk, a nanny nap.  We are grateful, we laugh a lot. Some of us also cry a lot as we understand that living well means feeling sad as well as happy.

One of our members found us this quote to round off our discussion : 'The art of being happy lies in extracting happiness from common things.' Henry Ward Beecher.

Weekly Discussion Summary ~ Back to work

"I would like people to think about the stigma of cancer in a similar way to thinking about the stigma of disability."

This week our discussion explored our experiences of dealing with our employers.

Being understood in our workplace can be a defining factor in helping us re-build our self-esteem upon returning to work, or, conversely undermine our already fragile confidence and self-esteem.

Some of us were able to carry on working during our active treatment and described the difference that sensitive colleagues and supportive managers made to us. We learned that there is no 'right' time to return to work, or to start a new job. In some ways, our experiences reflected that re-entering into work when expectations of 'moving forward' loom high (at the end of active treatment) is when we are usually at our most vulnerable. However, others described discrimination, for instance on being diagnosed with a recurrence. Whatever our circumstances, communicating our vulnerability when we want to put on a strong image that we are competent and capable is not an easy task.

As a group of women with primary and secondary breast cancer, our experiences were very varied. We heard of supportive employers as well as shocking examples of discrimination and injustice, which not all of us felt we had the emotional or practical resources to challenge. Some had felt forced to give up careers they loved, others had taken early-retirement. Many of us wanted to continue in careers that we loved but were struggling.

Not everyone was aware of the protection afforded to us by Equalities legislation, or that this would continue for the rest of our working lives.

But are we disabled?

Some of us expressed feeling ambivalent about this - having recovered from breast cancer, we were surely not disabled? Many of us felt the need to show we were stronger, just as competent and skilled as we always were and feared being underestimated or overlooked. Some of us felt that we needed the adjustments that we could request under disability procedures and this supported us to manage the demands of our jobs, particularly alongside issues like lymphodema, fatigue, pain and other side-effects.

Those working in organisations with clear procedures seemed to fare better, but not always. We learned that it helps if managers can have a conversation with us about our cancer and can separate poor performance, from support to help us to perform well.

Here are some practical suggestions:
A realistic phased return which introduces us back into the workplace.
Part-time working.
Staggered start and finish times.
Reduced workload/caseload.
The ability to rest in the day.
Support to plan and prioritise work. 
Equipment, for instance if we have lymphodema.

We need employers to understand that the impact of cancer on us changes, a flexible approach and supportive attitudes workplace.

Macmillan and Breast Cancer Care provide information on working alongside breast cancer.

Weekly Discussion Summary ~ Wide Awake Club! Insomnia

Our weekly discussion focused on sleep, or lack of it. Insomnia is a faithful partner of anxiety, and so many members reported having that middle of the night active mind that refuses us rest.  Naz told us that insomnia may be harmful to cognitive function, both in the short and long term. A vicious circle is formed as our worry about not sleeping makes the condition worse. 

Our members are women with both primary and secondary breast cancer, and they shared many things which lead them to sleep poorly.  Side effects of treatment and early menopause can hinder sleep:  fatigue is in itself a symptom and a contributor, and hot flushes which wake us up were cited by many as the main issue. Anxiety affects many - fear of recurrence, progression, family and work worries.  Pain is another factor, also cramps, and needing to get up for the toilet frequently.

Some women reported a reduction in the quality of their sleep rather than insomnia, with many sharing the feeling that they sleep very lightly.  The trauma of a breast cancer diagnosis may also affect our subconscious and introduce fear we aren't even aware of, which affects our peace of mind and consequently our ability to sleep well and wake refreshed.

Despite all the complaints about insomnia, our members have many ways of helping themselves to sleep better. Some have asked their GPs for medication, others rely on lavender oil. Some fall asleep to an audiobook or music, others count backwards, meditate, or write down their worries before bed. Breathing and relaxation exercises, and Reiki, may be helpful in calming us. Relief from hot flushes may help better sleep, with women trying acupuncture, medication, and chill pillows. Not drinking caffeine late in the day and cutting out all liquids (yes, even that glass of wine may have to go!) in the evenings may help with the regular trips to the loo. A cool dark quiet well-aired bedroom, a bedtime routine without the phone or tv, a warm bath or a cool shower, all are helpful.

Naz pointed us towards this article, which largely aligns with what our members find useful:

http://healthysleep.med.harvard.edu/healthy/getting/overcoming/tips

Naz's advice to all of us who struggle with sleep is to accept it, work with it, rhyme with it. It will, if we're lucky, come and go. We may feel at a low ebb after we've slept badly, but generally our bodies cope well and can live with it. A visit to the GP would be sensible to address any prolonged period of insomnia.

Weekly Discussion Summary ~ Introducing ourselves without mentioning cancer!

Cancer takes a back seat - just for a while!

This week we asked our members, made up of women with both primary and secondary breast cancer, to tell us about themselves without referring to their cancer. We also probed for an interesting fact.

This discussion highlighted the wide range of women who are affected by breast cancer - the youngest members in the group are in their early 20s while the oldest are well into their sunset years. Our members come from all walks of life, from homemaker to police officer, from nurse to teacher, with some retired.

Many women shared their stories and it was a joy to read them, what an amazing bunch we are!