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.

The Feeling of Anger

"...anger is like fire. It burns it all clean" Maya Angelou

Angry that it is unfair and we say 'why me?'
Angry that we witness so many dying
Angry so many are facing a poor prognosis
Angry there is so much inequality 
This may be me, it may be you
Angry at our helplessness
Angry at our powerlessness
We may be angry when we are diagnosed just as life is going well

Or before we've had the chance to do what we'd planned
Or because it robbed us of the chance to have children
Or because we won’t see our children of our grandchildren grow up
Or because life doesn't let us off from other problems even though we have cancer

Angry that we have lost our potential
Who we used to be has gone 
Angry when we fail to do everything we found easy before
Angry we are so tired
Our vulnerability makes us fearful
And sometimes this means we fear any strong emotion
We are overwhelmed by the strength of our emotion
And so we hide it away, deny it, or kick it into touch.
It might leave us wretched and wrung out and hopeless
And we are too afraid to let that happen

So we don't let ourselves be angry
We may be angry because we look ok but feel so awful
Angry when people assume we are cured
Angry when people tell us that if we have to get cancer, 
Then breast cancer is the best one to get!

Angry about injustice
Angry about politics
Angry about balloons that harm innocent wildlife
Angry about big things, small things, everything, just so angry
Maybe we displace the emotion - we get angry with our mother-in-law or colleagues

Letting go of emotions that waste our energy
And finding peace, not waging war with our bodies and minds
Cancer is not a battle
That we fight with our anger
We can channel our anger towards helping others
And towards helping ourselves
Anger can help us fight injustice 
Anger can help us to a achieve change
Anger can empower us
We can use it to build constructively
To drive us forward
To destroy what's not good for us

We can use it to cease tolerating people who treat us badly
Situations that don't serve us
Anger can motivate us 
To take control of what we can influence and change
Anger, channelled well, can help us move forward
Anger is like fire. It burns it all clean.

Fear of Recurrence and Progression of Disease

"It is quite a balancing act between transforming fear into motivation and also accepting fear"

Fear is an intense and primal emotion, an almost involuntary response to danger which manifests itself in a heart pounding rapidly in our chest, heightening our senses. Maybe a rush of adrenaline wipes all rational thought from our minds. We feel a strong impulse to hide or flee.

 

    But when we are told we have breast cancer there is nowhere to run and nowhere to hide. Our fears are fuelled by both 'the known' - that we have a life-threatening disease and 'the unknown' - by uncertainty and apprehension, by an outcome which feels completely outside our control.

 

    Fear of recurrence is real. Fear of recurrence can happen without any triggers or with triggers for example when we experience pain, fatigue and new symptoms, or health difficulties following treatment. We can be in a dilemma of what to do, when to seek medical advice or what we should see as 'normal'? Many of us have experienced 'scares' - bone pain, coughs, headaches, ambiguous scan results, lumps requiring biopsy - and going through further investigations and agonising waits for results. For most of us, these 'scares' are usually followed by enormous relief at finding out we are cancer-free, but many of us have experienced a local recurrence or metastatic (secondary) breast cancer.

 

    Our women with metastatic breast cancer describe a range of experiences: having symptoms dismissed by health professionals, or long delays; while others feel as though they have been struck by a bolt from the blue, sometimes many years after their original diagnosis, at a time when their fears may have subsided. Women with secondary breast cancer experience vigilance in a similar way to women who have primary breast cancer, but it is directed at symptoms which might indicate a progression of their disease.

 

    Although fear of recurrence never goes away fully, the longer the period of time that’s elapsed from a primary breast cancer diagnosis, the frequency of how often our thoughts turn to recurrence and progression can lessen. However, it is also acknowledged that often our fear and anxiety creeps upon us without warning after periods of time when we’ve had respite from it. Within our network, it’s acknowledged that this is hard to manage.

 

    Another recurring theme is that minor aches and pains can lead to the bias of our brains suggesting that we have secondaries growing somewhere in our bodies. Perhaps this is due in part to the loss of confidence in our previously healthy body prior to the development of breast cancer and the vulnerability this creates, along with uncertainty about our future? Long term side effects from aggressive treatments such as chemo or Tamoxifen or ongoing AI medications and early menopause can create symptoms that mimic secondaries and also make us feel older and wearier.

 

    We feel that our family and friends, who only see the exterior of us and who can’t possibly know how we feel inside, want to think of us as being ‘fine now', because they don’t possess the insight into recurrence that we do. This may also be due, in part, to active treatment regimens finishing, resulting in our physical appearance generally looking well, with often no outward visible signs of the cancer treatment we endured. For women with secondary breast cancer pubic understanding is limited. Our treatments do not make us better but simply help towards our metastasis being manageable and 'stable'. The real fact is that we are incurable.

 

    Our predisposition to anxiety prior to our diagnosis of breast cancer is something many of us believe may impact upon our ability to cope with our anxieties and fears generally, following a diagnosis of the disease.

 

    The emotional value of our BRiC network is really highlighted by those of us who feel that others close to us will never fully understand our fears because the breast cancer diagnosis didn’t happen to them. There is a shared empathy that exists within the group, which confirms the life enhancing and affirming nature of our very supportive community. This is very gratefully acknowledged.

 

    With around half of our members living with secondary breast cancer, the experience of those members adds another layer to the fears around recurrence, in relation to how long treatment regimes can achieve stability in the metastatic growth of the disease, which drugs will be accessible in second and subsequent lines of treatment and the emotional toll this takes on our ability to lead a good quality of life. Fears around death and dying are inextricably part of that.

 

    The COVID-19 pandemic has caused millions of people in the UK to feel anxious about their health; we, as a community of people within that, have had an extra layer of anxiety added to our already often-burdened mental wellbeing. For many of us revisiting our fears of recurrence, is essential to help us build resilience. Acceptance that we are never quite the same person we were prior to our diagnosis of breast cancer is part of that, which does not mean to say that we can’t feel strong, we just wear our strength and courage in a different way to those outside of the breast cancer community.

 

How Do We Cope?

Some of us seek help straight away. Others adopt a 'two-week' rule (or three) whereby we wait for several weeks to see if our symptoms go away. A few of us avoid going to our GPs because we know they will arrange investigations which we will find stressful or we fear being dismissed as ‘making a fuss’ or being a hypochondriac*. Good advice is to try and remind ourselves that we got sick before we had cancer; that cancer is only one possible explanation for our symptoms. It is, however, a challenge to be vigilant to new symptoms, without over-estimating the consequences of cancer (or other) related symptoms. How have you been dealing with and managing possible signs of recurrence?

* Worryingly, a recent report by (Breast Cancer Now, 2020) shows that around 25% of women treated for primary breast cancer in the UK consulted their GPs around 3 times before they received their metastatic diagnosis of breast cancer and 41% said they were not taken seriously. In fact, 20% of women were treated for another conditions prior to receiving their diagnosis.