Menopause: Our experiences and coping; BRiC's Collective Voice

Our most recent Sunday discussion focused on the topic of Menopause, its impact on us and how we deal with its effects. This heated discussion revealed that chemically induced menopause through breast cancer treatment affected those of us who were in our 30s and 40s as well as those of us who’d experienced a natural menopause prior to diagnosis. What was agreed on was that the severity of a chemically induced menopause was much greater than a naturally occurring one. For those of us who’d already experienced menopause there was a chance to be affected by it yet again.

A running concern through our comments revealed the lack of communication from our medical teams about menopausal effects, or how to manage them. We were to research the effects of treatment induced menopause ourselves and seek help on how best to manage the symptoms which are at most times debilitating. There were very few who reassuringly had more manageable symptoms. Many of us were grateful to support groups like BRiC who provided some information on how to address the symptoms.

Menopausal symptoms are challenging and can be debilitating. BRiC members discussed a vast range of symptoms affecting our quality of life: from vaginal atrophy and dryness, lack of libido and sexual dysfunction threatening our ability to maintain intimacy, to brain fog, forgetfulness, joint pain and cramps, as well as fatigue and hair loss, weight gain and let’s not forget hot flushes and insomnia… the list continues.

For many of us such symptoms persist for years post active treatment mainly sustained through endocrine therapies such as Tamoxifen, Anastrozole and Letrozole. The impact of such symptoms adversely affects our workability with many of us reporting that we’ve either had to scale down, take early retirement, or change jobs to less-demanding ones. Our self-esteem is affected and our confidence diminished in the workplace, with some of us reporting we felt dumb and stupid (something also pointed out by family members). A radically induced menopause with full blown symptoms can leave us emotionally and physically shattered and increase our vulnerability to anxiety and depression.

We discussed the possibility of supplements aiding in the management of menopause, though these were organic developments not necessarily prescribed by our medical teams. Some of us mentioned Vitamin D and Calcium with Magnesium, as well as cod liver oil. Any supplements taken should be discussed with our medical teams we noted. Some of us mentioned that acupuncture has helped and many emphasised the positive effects of exercise and diet, though shedding weight even with a balanced diet and much exercise was a challenge for many. The benefits of exercise are long documented and research from BRiC shows that challenging our brains in adaptive ways can help with brain fog improving cognitive health. With research documenting a causal role for cognitive function in protecting against anxiety and depression, this self-management tool can only empower us with the control that cancer has so cruelly taken away.

Unfortunately, unlike cancer-free women, HRT is NOT an option for us as it can fuel recurrence and increase our chances of secondary breast cancer especially if our original diagnosis was hormone related. In fact some of us wondered if our diagnosis was fuelled by HRT in the first place. In addition, most women who are not affected by breast cancer do not know that HRT is NOT an option for us, so some comments on how HRT can help us may come across as insensitive. The fact is that there are no simple solutions for us.

No one symptom of menopause affects us in isolation, the symptoms are very much linked providing a difficult environment to function healthily at best of times. Our emotional, sexual and cognitive health are all interlinked as our bodies work in harmony. A collective threat to our basic functioning is damaging and our members' experiences clearly demonstrates the emotional and physical pain they endure. This calls for an urgent need for measures to systematically address menopausal effects, longer term. A link suggested by one of our admins: Dr Caroline Humber, provides some useful information as a starting point, but more needs to be done: https://flipbooks.leedsth.nhs.uk/LN001794.pdf

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Weekly Discussion Summary ~ Cognitive Enhancement

Forgetful? Can’t follow conversations? Forget names, or, words in the middle of sentences? Get the day wrong? Lose your train of thought? Can’t concentrate? 

Yes. Oh yes! 

These lapses are all too familiar to those of us diagnosed with cancer - it’s as if a brain fog descends and we need the grey cloud that is ‘chemo-brain’ to lift. 

We’ve talked many times about the phenomenon of “chemo brain”. However, this week our discussion focused on “cognitive enhancement” i.e what we can do to help manage the effects of ‘chemo-brain’ following a breast cancer diagnosis.

We know from our previous discussions that the reasons for impaired cognitive functioning are complex but can be linked to two factors: the effects of aggressive treatments for breast cancer AND the emotional trauma of the diagnosis itself - because the stress and anxiety associated with a cancer diagnosis has a similar effect to post traumatic stress disorder (PTSD) on the brain.(If we can hold in mind the significant emotional and psychological impact on the brain it can help to explain why people who have not had chemotherapy also experience chemo-brain.)

Some of us wondered whether our difficulties related to menopause, or menopause-like symptoms?

Naz explained that treatments such as tamoxifen and letrozole strip our bodies of oestrogen. Oestrogen is fuel for brain function and is a vital hormone enabling the binding of information synthesis, and it affects white matter integrity.  

Some of us wondered whether our experience of cognitive decline followed a similar path to the natural process of ageing? 

Naz told us that the brain is affected in a way that is similar to ageing, but the effects are far more dramatic - brain matter integrity is compromised and structure is reduced, causing a disruption in communication across those structures. 

We wondered if there were any supplements we could take for cognitive enhancement, and a supplement for ADHD was mentioned.

Naz explained that breast cancer diagnosis and treatment affect our brain in ways that are rather different to how the brain is affected in ADHD, despite some similarities. Also, a wider network is affected and the trajectory of the effects are different. 

Our members, who are women with primary and secondary breast cancer diagnoses, described a variety of memory and cognitive function failures, leading to a reduction in self-esteem and self-perception. This can have a significant detrimental effect on everyday life as we struggle in our work and our relationships. 

Naz told us that the good news is that cognitive function can be enhanced and the brain’s plasticity means that new neural pathways can be built and existing ones strengthened. Cognitive function can be improved through regular practice of targetted exercises, and continuing to learn new things and keep our brains challenged and active is key. 

Alongside this, self-care is so important, so that we don't become emotionally embroiled in feeling less competent than prior to diagnosis. 

Some of us had continued to work during treatment. We wondered if that helped us to stay sharp and to suffer fewer cognitive difficulties? 

Naz told us that while working has benefits for some - and indeed maybe a necessity - we do not know how working during, or indeed not working during treatment, affects our longer term cognitive efficiency. She reminded us that trying to get our brains to work harder when they may already be struggling to cope may not be a good thing. 

Some of us shared that we practice brain training and that we had found learning new skills could be helpful for focus. Activities that encourage us to co-ordinate brain and body may be particularly useful, perhaps playing a musical instrument or dancing. Likewise, creative, absorbing activities are also helpful for some. Mindfulness can also be a calming activity that can help in grounding us and facilitating focus.

Some of us wondered if we have simply become used to our new foggy state, perhaps it has become part of our ‘new normal’, part of the adjustment we’ve had to make post diagnosis. 

Many of us write lists and use reminders to help us get through everyday tasks.

Practising good self-care, being our own best friend, being kind to ourselves, can make a big difference to everyday wellbeing. 

Some of us practice brain training games - there are many apps readily available - but some of us find them difficult, and not being able to master them as perhaps we used to can mean they become counter-productive as we feel a failure. However, the research carried out by Naz and her team is showing evidence that cognitive training can reduce vulnerability in breast cancer. 

Naz told us that it’s important to persevere with ongoing learning activities and challenges that push us out of our comfort zone. 

This photo is part of a project led by group member Diane to represent how ‘brain fog’ feels. To find out more about her work please visit her facebook page Hands 4 Wellbeing: https://m.facebook.com/Hands4wellbeing/ 

If you are a woman living in the UK with a breast cancer diagnosis and you would like to join our private group please send us a private message via Facebook. 

Weekly Discussion Summary ~ Chemo Brain Top Trumps!

If only we could forget about chemo-brain.....

In our discussion this week, we played "Chemo-brain Top Trumps" and shared our brain lapses and tried to out-do each other!

Chemo-brain is one of our most engaging discussion topics because it feels so real, so alive, so forgetful. If only we could ever forget about forgetting.....

Oh, the joys of forgetting! But no, it's there, every day, just when we want to emphasise something important, just when we want to focus and concentrate on a line of argument, just when we want to name something, remember a name, or flag up an important point....

Chemo-brain, it emerged, affects us all, irrespective of whether we have primary or secondary breast cancer. Those of us who have not had chemotherapy also experience chemo-brain. We shared how often we run into a room to collect something, and yes, we've forgotten what it was as soon as we enter the room. We lose track of where we've put our keys, leave messages for ourselves or just occasionally, we might call our partner the wrong name! Whether our lapses are small or are large, they arise because of our inability to hold something (yes, it can be small) in our working memory. It can be funny, but usually it is hard, sometimes upsetting and very undermining of our confidence.

Why does chemo-brain happen?

Naz explained that chemo-brain happens after diagnosis and before treatment even begins. Most of the studies show that there are reductions in gray and white matter in the brain in areas that support cognitive functions such as working memory, attention and concentration. This is due to the impact of trauma, and the because the worries and fears that occupy our working memory take precedence, our brains end up having to work harder in the long run. We find that we take longer, we make more errors, we feel sluggish, and our cognitive functions are slow. The effects of chemo-brain are amplified through chemotherapy induced cognitive decline, as we have discussed before, and it's thought hormones may also impact on cognitive functioning.

Our discussion highlighted stress and fatigue make chemo-brain much, much worse and we feel we can become SO incoherent that we lose the ability to speak.

There's no doubt that chemo-brain was prevalent for all of us. Particularly hard is the lack of understanding from our families who unintentionally undermine us when our lapses stop being funny and start being annoying (as I'm writing this, my daughter has declined my suggestion that she write down the name of a book because "she has a memory"). We find it hard to talk about our chemo-brain at work and some of us shared that we feared being seen as less competent. Perhaps hardest of all, is the lack of wide recognition and support available to us which is why sharing and talking - and laughing when we can - is so important for our resilience.

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

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Weekly Discussion Summary ~ Chemo brain 4

"Chemo-brain is real."

Our weekly discussion explored the phenomena known as chemo-brain - the thinking, attention and memory problems that so many of us experience during and after cancer treatments.

Chemo-brain, as our group discovered, is a somewhat misleading term because even those of us who had not had chemotherapy described experiencing impairments in our thinking abilities.

What then do we mean by "chemo-brain"?

Our discussion, which included women with primary and secondary breast cancer, described the following symptoms: forgetfulness, lapses in attention and poor concentration; many shared that we experienced significant difficulties in relation to thinking and retaining information, particularly our short-term memory and 'working memory' by which we mean holding one task or piece of information in our mind while completing another task, and, with our 'executive function' which is 'the CEO of the brain' because it involves those skills which allow us to set goals, plan and get things done.

Sometimes our errors were small, and we could laugh them off, such as walking into a room and forgetting why we were there, or getting our partner's name wrong! But more often, our thinking problems feel much more significant and undermine our confidence and ability to function in our everyday lives, for instance at work and in our relationships with our friends and families. Worse still, those around us can get irritated and impatient, finding us poor company and less organised than we used to be.

Naz explained that chemo-brain is real and that research has repeatedly shown evidence for it - both 'self-reported measures' of cognitive decline that reflect our perception of our cognitive functioning and 'objective measures' of cognitive function, looking at behavioural performance on tasks that measure cognitive function, and 'neuroimaging measures' that reflect activity in the brain.

Imaging of the brain (neuroimaging) has shown that chemo-brain exists right after diagnosis and before treatment begins - individuals with breast cancer showed more brain activity in the brain structures that are involved in executive function and working memory, indicating what Naz called 'compensatory efforts' i.e. the brain is compensating. Interestingly, the behavioural performance of individuals with breast cancer was the same as non-affected individuals. This means that individuals with breast cancer had to use MORE resource to manage the same behavioural outcomes as non-affected individuals. Naz told us she is working to be able to understand this deficit in more detail.

Why does chemo-brain occur?

The trauma of receiving a life threatening illness diagnosis impacts on our psychological and social well-being and dealing with it requires mental as well as physical resoures. Our working memory begins to accumulate information and worries which supercede everything else. We can quickly become overwhelmed and our executive function becomes sluggish and inevitably prioritises cancer related information. It's not surprising that we experience problems holding other information in our working memory.

Fatigue is a natural consequence of chemo-brain as our bodies and our minds need to work harder, so much harder, just to do the ordinary, every day activities which we previously took for granted - it feels like we are swimming against the tide, using all our energy to stay in one place.

Chemo-brain, Naz told us, is exaggerated considerably by chemotherapy and radiotherapy. Hormonal treatments, lack of oestrogen and sudden menopausal symptoms also contribute, accumulating these effects on our ability to think, remember, and carry out tasks.

Naz explained that chemo-brain can increase our vulnerability to anxiety and depression. As a group, we described how our forgetfulness and lapses in ability severely undermined our self-esteem, self-confidence (at work), and our relationships.

How long can chemo-brain last for?

Naz told us that chemo-brain effects lessen over time, but this is highly dependent upon individual differences. Many of us felt that our chemo-brain has worsened in some aspects of our thinking, memory and attention.

What can we do to cope with chemo-brain?

* It’s easier said than done, but Naz said there is evidence to show that challenging our brains in systematic and adaptive ways can help improve processing efficiency and this has implications for well-being and resilience.

* Sleep has enormous effects on consolidation and the formation of new neural connections that can help maintain healthy cognitive functioning (but as we know, many of us struggle to sleep).

* Controversially, our food has an impact too, and some of us reported drinking water helped us to feel clearer.

As a group, we had lots of suggestions about ways to cope including: tackle small tasks immediately; write things down straight away; use notes, lists, a diary, post-its, phone reminders and alarms. Self-compassion and managing our stress can also help us to cope with the effects of chemo-brain. Our experiences highlight how little support and understanding is available to us and what we need most of all is for 'chemo-brain' and it's consequences to be taken seriously as well as interventions to help.

If you are a woman living in the UK with a breast cancer diagnosis and you would like to join our private group, please message via our facebook page

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

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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 ~ Chemo Brain 3

Chemo Brain Chaos

A diagnosis of breast cancer is a traumatic event. Experiments show reductions in the brain's white and grey matter following diagnosis, even before treatment begins, which is exaggerated through treatment and beyond. Cognitive function is reduced, and studies find those with a breast cancer diagnosis have to work harder to achieve the same levels of performance as those without.  The trauma leads to a focus on recurrence, and rumination and worry are common, leaving less working memory available for goals and day-to-day functioning. Women may become anxious and possibly depressed leading to a further decline in cognitive efficiency.

For those who have had chemotherapy, there may be lasting effects on cognitive ability, hence the term 'chemo-brain'. However, similar symptoms are reported by those who have not had chemotherapy, and it is clear that the experience of 'brain fog' is common for many women diagnosed with breast cancer. It is likely that the trauma, alongside the active treatments (such as surgery and radiotherapy) and ongoing hormonal medication, ovary-removal as well as treatments to prevent the spread of secondary cancers (which can bring on early menopause, or more severe menopausal symptoms), is sufficiently disruptive to cause 'chemo-brain'.

Many women with both primary and secondary diagnoses reported finding very little sympathy for 'chemo-brain' from the medical profession, though others felt well supported by their teams.  As well as general memory loss typified by forgetting names and appointments, women struggle to concentrate and follow conversations, and this impacts on their confidence, particularly in the workplace.  Family and friends may get impatient with them, finding them less efficient and organised than they used to be. For articulate women used to multi-tasking, this is a huge source of frustration.

Fatigue was a contributing factor, with many women finding 'chemo-brain' worse when they are tired, but also noting that the brain fog means more energy is expended in completing every day activities and so leads to greater fatigue.

There were lots of excellent suggestions to help: for example: tackle small tasks immediately; write things down straight away; use multiple reminders: use notes, lists, diary, post-its, phone reminders and alarms;  pace yourself; take breaks (fresh air and exercise); cut yourself some slack; ask for help.

Fortunately we can train our brain to better regulate our emotions which assists mental clarity. By strengthening the relevant neural pathways and the emotional connections between our emotional and cognitive parts of the brain, we can increase our cognitive flexibility and improve our day to day ability to function efficiently.

This popular topic is one we've discussed before. New members give fresh perspective and seasoned commentators find new angles. Previous summaries can be found in our blog, Panning for Gold: http://bcresiliencecentre.blogspot.co.uk/search/label/Chemo%20Brain

Weekly Discussion Summary ~ Chemo Brain 2

This week the focus of our discussion was chemo-brain, a catch-all term for the 'brain fog' that many women experience post cancer diagnosis. Commonly attributed to the after-effects of chemotherapy and trauma, it may also be present for those who have not had chemotherapy, and in the longer term, hormone treatments and fatigue may also be contributors.

Chemo-brain has long been a controversial issue, however recent research has provided evidence to substantiate brain changes which are significant enough to show up on scans. Our members provided consistent anecdotal evidence for these changes.

Women at various points following a breast cancer diagnosis (our group supports women with both primary and secondary diagnoses) reported living in a brain fog and being unable to function as well as they did before. For many, this leads to frustration and anxiety, with many feeling less competent at work and in their home lives. A resulting loss of confidence was reported by many, with those who have to attend meetings at work struggling particularly. 

We forget names, we lose track of conversation, we feel lost and foolish when memory incidents affect us in public, although most of us are able to laugh at ourselves too! We are unable to spell, write, read, perform basic maths or remember why we walked into a room. Some have found clean washing in the fridge and have picked up other people’s keys in an effort to remember their own. Some have fallen, dropped things, knocked things over. Having a foggy mind can lead to a clumsy body, which may not be such a laughing matter. 

We make lists, use our phone alerts, take copious notes, muddle through. Sometimes those around us are sympathetic but many of us have experienced the frustration of others as they find us different to how we used to be. Some women practise letting go and have found some comfort in acceptance, feeling pleased that they can drop the veneer of being in strict control.

A key point made by several women is that they worry that their forgetfulness may come across as rude or uncaring. Many are hard on themselves, others more able to go with the flow. Some spoke of increased anxiety, others noted a reduction. All those who contributed reported a significant change in their ability to think clearly and a difficulty in adapting to their new state of mind.

Despite these troubling experiences, Naz was quick to point out that there is help at hand. The brain has a plasticity that can be altered by cognitive exercises, and mindfulness and relaxation can be very helpful. Strengthening neural pathways via systematic cognitive practices may help us to rebuild the weakened parts of our brains.

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 us by Facebook message https://www.facebook.com/resilienceinbreastcancer/

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Our thanks to Amanda for this lovely photo. 

Weekly Discussion Summary ~ Turning Down the Volume on Cancer

How do we not allow our cancer to dominate our thoughts or define us? How are we more than this diagnosis?

Naz introduced our weekly discussion by reminding us that we had found that cancer is not a chapter in our lives that we can put behind us, but we take it forward with us. We are hypervigilant for signs that our cancer is back or progressing. Our emotional and cognitive brains become out of balance, with our emotional brain dominating as it remains on high alert following our trauma. Naz’s research work looks at cognitive interventions which strengthen the seesaw relationship between the emotional and cognitive brains, exercising and challenging the cognitive brain in order to regulate the emotional brain. 

Many of our members have adopted the popular proven cognitive practices which help to restore the balance, namely mindfulness, CBT and support groups. Our discussion highlighted the value of sharing fears and anxieties with those who understand, and the compassion showed by members for each other's stories was particularly apparent this week.

As you might expect, time is a healer, and the longer a woman shows no evidence of disease following diagnosis, the lower the cancer volume may become. However, for many, fear is constant and upsetting. Many find keeping busy helps, and distract themselves with continuous activity. Poor sleep may find us being visited by cancer demons in the small hours, when anxiety finds a high decibel level. Humour is a great way to dispel fear, and many find spending time with friends and family, doing ordinary normal stuff, is the best way to forget about cancer once in a while.

For those undergoing treatment, the noise of cancer is deafening. Some women turn it down by numbing or intellectualising their feelings. Others are bravely immersing themselves in the high volume and may be feeling desolate, unwell and miserable. However we cope, we are not alone, and our group helps us all through these dark times.

Turning to face our fear through acceptance, and then taking control by concentrating on our own well-being, is helpful. We were reminded that the noise of cancer can be a positive in that it never lets us forget to listen to our bodies, and it makes sure we remember how precious life is. 

Our discussion, which included women with primary and secondary breast cancer, reminded us all that whatever happens, with support and the practice of resilience we can live our best lives, with the cancer noise sometimes gentle in the background and sometimes harsh and intrusive. The seesaw may be out of balance, but we are never alone on it. 

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 leave your name in the comments.

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Thank you Debbie for letting us use this beautiful image!

Balancing Positive and Negative Emotions

“Well, I've got thick skin and an elastic heart, But your blade—it might be too sharp, I'm like a rubber band until you pull too hard, Yeah, I may snap and I move fast, But you won't see me fall apart, cause I've got an elastic heart” (Sia, Elastic Heart)

"Think positive” is a phrase we often hear when we are diagnosed with breast cancer. Sometimes we say it to ourselves, sometimes others say it to us as a way of encouraging us. But what does it really mean to 'think positive'? How does it benefit us and are there drawbacks of a 'positive' mental attitude?'

In our network, we shared that adopting a positive outlook had helped us to manage the intense emotions that are in the driving seat when we find out we have primary or secondary breast cancer. Our initial reactions include shock and disbelief; we are often forced to make treatment decisions​ and manage schedules, adopting our natural tendency to adopt an avoidant style of coping. Many of us described being naturally drawn to avoiding our negative feelings, wishing to appear positive in our interactions with the world at large, and in some circumstances we thought this was helpful​. However, draw backs to this attitude include becoming cut-off from our emotions, numb, or unable to share our authentic feelings, leading us to feel isolated.

Some of us shared that we could express positive and negative emotions, and felt this was liberating. Others described consciously or unconsciously finding themselves being drawn to the 'silver linings' - the positives that had come about as a result of our changed circumstances, such as spending time with our children while being on sick leave.

Naz told us about research on cognitive flexibility, its promising influence on mental well-being and encouraging effect on building resilience. The elasticity and plasticity by which we embrace our diverse range of emotional experiences helps us regulate our emotions appropriately and appreciate our experiences, however complex they may seem.

In terms of our feelings, this means feeling sad, grieving when we need to and being fearful when it’s necessary. A flexible style of thinking, like the rubber band, is elastic. Naz explained that brain plasticity is not a simple thing to achieve, especially when we have gone through highly traumatic experiences, ones that continue to haunt us. Breast cancer brings with it uncertainty and the danger of recurrence, the progression of disease, loom high. In these circumstances, our brains are geared towards anxiety related thinking styles, appropriately even, hypervigilant for signs of danger, feeding into anxiety and worry. However, this increases our vulnerability.

Naz explained that research shows that our ability to embrace negative thoughts and painful experiences paves our way to allow the positives we experience to nurture us. This is especially relevant to those of us living with breast cancer and its effects because we take our cancer forward with us. Our moments of ‘being down’ can help us to understand ourselves and embracing our inner fears helps us to practice gratitude, and grit. The balance is hard to achieve, but it can be done with practice.

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.

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