Post Traumatic Stress Disorder (PTSD)

 Evidence suggests that around 80% of women experience PTSD at one year post diagnosis of breast cancer.  

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.

     PTSD symptoms cover, but are not exclusive to, 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, have all helped. Opportunities to talk and share as a group were invaluable because they both validate and normalize our responses - we could say 'What you too?' and breathe a sigh of relief we are not alone.

The Toxic Positivity Effect

 

 

‘You’ll beat cancer if you stay positive’. This topic and its impact on our emotional well-being has been one of the most popular with hundreds of comments that hit close to our heart.

Our members have many a time heard the words ‘stay positive’, ‘a positive mindset will breeze you through chemo’, ‘You are so beating cancer’s arse’ ‘If you stay positive, you will get through this’, ‘You caught this early, you’ll be fine’, ‘You’ve SO got this’, ‘If anyone can kick cancer’s arse it is you’, ‘You’ve got the better cancer’. However, the reality of how these words make us feel is very far from positive.

What became quickly clear was a sense of how our feelings of fear and sadness due to cancer are minimised by others. We felt we were not allowed to be anxious, sad or fearful. A member said, ‘it shook me to the core’, and another saying ‘it was deeply painful’, when needing to smile whenever her cancer was mentioned. What we almost all agreed on was that the relentless positivity force hindered our ability to process the trauma that we had endured, minimising our emotions to meet the expectation of others, and this we found utterly exhausting and effortful.

Many of us felt that putting on our positivity cloak was a must for others around us as they would not be able to cope. This extended to immediate family, friends, and colleagues. Sometimes, we’ve had to apologise for not ‘coping’, amid not being allowed to grieve the losses we experience due to cancer.

There was a sense that we felt less positive whenever we tried to enforce this positivity, and so we’ve ended up being selective in our approach, censoring what we say to whom and pretending everything is fine and allowing ourselves the dishonesty to others when our feelings are not validated. This has meant we’ve lost friends and family members along the way.

The truth is that pretending that we are ok when we are not, is not a helpful line to take. We are not doomed and gloomed, we do have ‘positive’ days and we are hopeful and resilient, we want to survive to the best of our ability, and this is a really delicate point when it comes to secondary breast cancer. But the reality is that our fears can be very real to us. The sadness from the loss to our identity, and the side effects of treatment which linger on for years put us in a vulnerable position and can be limiting. In fact, we are not fighting cancer, but we are fighting the side effects of treatment. We acknowledged that embracing our difficult and upsetting feelings can help us experience a multitude of emotions that can only be beneficial longer term. We’ve learned that suppressing our emotions will backfire, validating them, and addressing them with appropriate tools can lessen the need for the ‘toxic positivity’ which we have found unhelpful.

An interesting point that emerged was a delayed experience of Post Traumatic Stress symptoms when we’ve in fact tried to be jolly and ‘positive’ through treatment. The reality of what has hit us has emerged later after a few years. This evidence shows that the inability to process the trauma that we have endured has led to a delayed onset of PTSD symptoms which isn’t the longer term aim of ‘being positive’.

We can refuse to be jolly and sunny when having sad days. We believe that a positive outlook is helpful of course but not the relentless optimism which can be blinding. We have learned that we can accept our vulnerabilities without resigning to them, and by embracing our emotions we are not denying them the attention they deserve.

We agreed that allowing us to ‘feel’ is to ‘empower’. A balanced approach to our emotional experiences will suit us better longer term. In fact, there is good evidence to show that one of the reasons behind depression is the inability to fulfil positive expectations. We do not want to feel depressed, we want to be able to thrive and grow from our trauma, so counter intuitively or not forcing the positivity cloak on can only increase the discrepancy between where we are and where we are expected to be.

Balancing the 'Negative' and the 'Positive'

 

“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.

Feeling Abandoned

 

“It felt like everyone was so focussed on treating the cancer that nobody gave a thought to the life I’d be left with afterwards.”

Our members talked about lack of support and feelings of abandonment once our treatment ends.

    We are expected to bounce back but there is very little psychological support available to help us find our way forward.

    Coping with the shock and trauma from the day we are diagnosed often only manifests properly at the end of active treatment. It’s like a perfect storm. Treatment ends, our friends and family celebrate, our employers expect us back at work, but the reality is we are on the edge of completely falling apart. It can cause us to be completely numb and disconnected with ourselves - in danger of experiencing clinical depression.

    There are limited options available; moving on groups, charities offering counselling, complementary therapies, etc. which is a start, but not enough. Firstly, we must be in the right frame of mind to seek out the places that can help us, which is not that easy and can be very overwhelming. Accessing help through the NHS is a postcode lottery, and if you’re lucky enough to qualify it can be months before any help is available.

    “If cancer treatment is getting more sophisticated and giving women a chance to live longer, then there needs to be the support to help them live well; physically, mentally and emotionally.”

    With a cancer diagnosis we are forced to face our own mortality while being put on a conveyor belt, where we come out the other end scarred for life and poisoned, in order to save us. Treatment is very contradictory and often difficult to reconcile in our heads.

        “Our society does not arm us with the tools to be thrust into full mortality awareness and immediate identity destruction outside of an abusive setting.”

    COVID added another complication to recovery. The complete isolation of lockdown denied us the return to normal, because normal simply did not exist. There were no groups available to attend, no networking classes, no activities such as swimming - we were barely even allowed to go for a walk. All very detrimental to our psychological and emotional wellbeing.

    Having a secondary diagnosis makes us highly vulnerable. If women with secondary breast cancer are expected to live longer with medical advances, they need support to live their remaining time in the best way possible. For example, we have been told there was only one Secondary Breast Care Nurse in the whole of Wales (until 2023) . What chance do we have of being supported by a system that is so massively under-resourced and neglected?

    Indeed, some feel so traumatised that they would consider refusing treatment if they were to receive another diagnosis in the future. How is that right? We are not asking for miracles. We face our reality head-on, every single day, with very little relief.

    At BRiC we offer support to all but believe that everybody with a breast cancer diagnosis should have access to an NHS backed resource once they have finished treatment, they should not have to search for it. Immediate and ongoing psychological support is a major part of our recovery, we shouldn’t feel as though we have been set adrift into the unknown.

Grieving the Loss of Our Former Self

Who Am I? 

    Our discussions have revealed the many ways women with primary and secondary breast cancer experience loss - the loss of a once care-free life; of normality, of womanhood and sexuality, others described losses associated with the side-effects of treatment, others speak about the loss of a career and those of us living with secondary breast cancer described grieving for others, or the loss of hope for a future with loved ones.

     Many of us described putting on a ‘brave face’ or being ‘positive.’ Some of us were surprised to find that we had not thought about grief in relation to our experience of breast cancer. Those of us who had experienced the loss of a loved one found ourselves comparing our bereavement with our experience of breast cancer and we heard that experiencing a bereavement while dealing with the emotional impact of breast cancer shaped and coloured women’s experience of grief in profound ways.

     The numbness and detachment we commonly experience are our body's defence mechanisms which help protect us and cope with the agonising pain. For some of us, the overwhelming instinct to avoid any painful feelings continues - some of us shared that we did not know how to grieve, either because we were afraid of the depth of our feelings, or because we wanted to protect our loved ones.

    Naz told us that recent research has shown that grieving after trauma and significant loss allows us to heal. Recent studies looking at the longitudinal effect of trauma on physical and mental health have concluded that those who managed to grieve for significant periods of time were in better health physically and emotionally in the long run. A process of grieving helps us to come to terms with our losses. To do this, we rely on our cognitive functions which help us to regulate our emotions and as we know only too well, can run high in the face of the uncertainty and trauma that accompanies the rollercoaster of breast cancer.

     Minimising the traumatising effects of breast cancer and the pressure to be so-called positive - for those of who have finished active treatment, this might mean, putting the ‘cancer chapter’ behind us to move forward; for those of us with secondary breast cancer, this might mean we have to completely deny the reality of our situation - and this can interrupt the grieving process, increasing our emotional vulnerability to distress, anxiety and depression.

     Grieving after loss does not mean that we put our lives on hold and get stuck – it opens the way for curiosity, exploring an emotionally rich life that acknowledges our sorrows, releases tension moving us towards resilience and flexibility. It helps us adjust. It helps us to heal.

Grief and Empathy

 

Grief is not one emotion, it is not simple and it is not the same for everyone. An emotion which underlies grief is empathy, empathy for the person who has died, for their loved ones, for others around them. Empathy is a powerful emotion and enables us to make connections, even with people we don’t know personally. Grief and death are frequently taboo subjects but having a cancer diagnosis means we have all had to face the possibility of our own death, even more so for those of us with a secondary diagnosis; knowing we can express our fears in our private group enables us to share that burden. We can say “I’m sad about her dying because it could be me” without fear of being judged. It is important to understand that grief is a natural process, not linear and not time-constrained. People grieve in different ways and for different reasons, but each is valid.

    We are each forced to face our own mortality every time we receive the devastating news that a member of our group has died but it’s reassuring to know that we are not alone in feeling emotionally vulnerable and fragile. Naz’s academic expertise and professional knowledge around how our brains respond to trauma helps to guide us. She is able to gently articulate the reminder, that as humans, our brains are hardwired to feel fear. This is part of our protective mechanism as we scour our internal and external landscape for danger as “a threat to our own survival has been flagged yet again.” Along with that comes the supportive message to us all, that “it’s ok not to feel ok.”

     Each of us can behave harshly towards ourselves as we tell ourselves that we should be able to cope or better manage our feelings and emotions. Several of our members commented on how exhausted it makes us feel, as we try to muddle through the emotions in our minds. We acknowledged that talking to ourselves in a way that sees us trying to fight or resist our difficult emotions isn’t helpful. Instead, many of us are gradually accepting and understanding that if we embrace how we are feeling, this is much more nurturing and supportive of our wellbeing in the long run.

    As individuals, several of us were able to open up and reflect on recent tragic circumstances and losses within our own families, friendship groups, and local communities. We are all one family here in BRiC but of course, we know we’re all part of wider families, friendships, and communities. There are many of us who have been recently trying to cope with feelings of sadness and grief in connection with experiences of loss closer to home.

    The word ‘rollercoaster’ was used several times to describe the peaks and troughs of our emotional responses. Some of us are looking to a future that we know won’t include us and that burden weighs heavy as we present our ‘brave face’ to the world. The highs and lows of our emotions often manifest themselves in us becoming angry and frustrated at seemingly small things but our discussion highlighted a more accurate picture; that it’s not really the small things that are triggering us, it’s the layers that we’ve piled over the big things in our lives that see our emotional response bursting to be freed and acknowledged. This is upsetting for us as we reflected, that often, we don’t feel in control of our emotions however our discussion helped to shine a salient spotlight on this: we don’t have to put pressure on ourselves to be in control of our emotions; this is an impossible task. Blocking tears and burying things inside of us only serves to help our emotionally challenged internal landscape to become more overloaded.

    There is an expression in mindfulness which is, what we resist, persists. This is a gentle reminder that facing all of our emotions head-on with kindliness and self-compassion is much more helpful in bolstering the vulnerability of our human experience as we encounter both pleasant and unpleasant feelings, thoughts and emotions. To accept only the pleasant aspects of our life experience is to acknowledge only one-half of each of us.

    The opportunity to talk, connect, and be part of our collective voice is life-enhancing and life-affirming. Hearing the message that all of our feelings are valid, that it’s ok not to be ok and that BRiC is a safe place where we can receive and accept support is very much felt and hugely appreciated.

    “If we are physically hurt, loving our wounds, and nurturing them with TLC, makes them heal faster, ignoring them doesn’t.”

    The life lessons, insights, and sharing that our Sunday night discussion provides, help us to embrace all aspects of ourselves. We are held together by our experience of breast cancer and we are all heard. Sharing and communicating with one another helps us to feel supported, uplifted, and less afraid. We are helping one another to face all our emotions.

Loss and Mixed Emotions

 

    In BRiC we have described feelings of intense sadness and how deeply we are affected by the loss of someone with cancer. For some of us there is numbness, which can shield us from our most painful emotions. We also acknowledged that our immediate reaction is often a combination of sadness, mixed with deep fear for ourselves. We have realised that underlying our grief is the obvious - yet unspoken - fact that we are reminded of our own vulnerability, something that we carry with us, yet often suppress to keep going. This uncertainty, adds to our fear, which can then make us extremely apprehensive about the future.

    There is no right or wrong way to experience fear, sadness, and grieving for our loved ones, but if we allow ourselves to get closer to our emotions, our 'hurt', then this evidently has beneficial effects on a number of levels. This is the opposite of denial, and of course needs much flexibility and strength to know how to down regulate our emotions when we feel ready to move forward. Grieving, and acknowledging our fears can only give us the strength to move forward.

    Grief is a complex emotion and affects us all differently, but it is something which we all experience in some way. People often talk of grieving as a process, but it is not a linear path, there are twists, turns, surprises and bumps in the road. As a group of women who have all had a breast cancer diagnosis, we were aware that deaths caused by cancer often touched us the most, perhaps reminding us of our own mortality or causing us to think “that could be me”. One of our members said that once we have had a cancer diagnosis our ability to live a carefree life has been taken away forever; thoughts of death may become an everyday part of our lives. We all know that none of us will live forever, but cancer steals away our peace of mind and may leave us in a constant state of worry for whatever life we have left.

    Some of us have been raised to keep their emotions in check, finding expressions of grief unnatural and making the process of grieving more difficult. Cancer deaths often touch us very personally, even if it is the death of a total stranger, it can be hard to explain to others how the death of someone we don’t know affects us so deeply and stops us in our tracks. There were others who felt unaffected by the death of strangers or celebrities; members talked of needing their energy and focus to be on themselves and their loved ones; having a cancer diagnosis is exhausting and sometimes there is just not enough strength in us to think about people we don’t know.

Grieving for people we don’t know

    For some the public outpouring of grief often seen when a celebrity dies, is uncomfortable and sits uneasily with them. Occasionally it is the similarity between the deceased and ourselves which causes grief – “he was the same age as me”, “her children are the same age as mine”, “they were married as long as my mum and dad”, “her diagnosis was the same as mine” – all these things can hit home and remind us of our own tenuous grasp on life.

    We questioned whether what we feel when a stranger dies is actually grief, or is it empathy; fear; compassion; sadness; anger? Perhaps all of these emotions are part of grief, but we wondered if it is really the same as losing a loved one. Anger was an emotion many of us shared, particularly when we hear the words “died of cancer”, we are acutely aware that cancer is indiscriminate and such a cruel disease. It was interesting that the age of the deceased was pivotal for some members, feeling less sadness for those dying at an old age, but grieving deeply for those who die young; however this wasn’t the case for everyone, some members felt all deaths were equally distressing no matter the age of the person who dies.

    Sadness for those left behind was an overarching theme, we acknowledged that part of grief is facing the future without someone. The sight of someone left alone after a lifetime with a partner can be heart-breaking to see. Sometimes when hearing of a death it reminds us of those we have lost and old memories can resurface, not all of them good. The death of parents was something many of us could relate to, for most bringing mixed emotions, sadness and loss, but happy memories and feelings of warmth; sadly, for others childhood memories were not so good and reminders of deceased parents brought painful memories. One of our members paraphrased Jamie Anderson saying: “Grief is just love with nowhere to go” and we all felt that grief for those we love and care about is usually much more powerful than for the celebrities and public figures. However, there were several mentions of times when the death of a celebrity has affected us deeply, sometimes taking us by surprise, leaving us distraught and feeling completely lost.