Cancer and Loneliness

 

“Cancer is a lonely place to be”

 

We've talked about our experiences of loneliness. Naz told us that loneliness can be a long-lasting effect of a cancer diagnosis and can increase the chance of developing depression. So why do we feel so lonely, even among our family and friends?

 

We have found that whilst some of us have experienced loneliness lifelong, for many of us the experience of feeling lonely after diagnosis of breast cancer is new. We find that loneliness continues even years after developing cancer. We find that there is a lack of connection between ourselves and our friends and family, even in the most supportive of our relationship groups. Having a serious illness such as cancer changes our perspective on life with a real sense of fragility and a loss of our own sense of self in a way that cannot be fully understood by others who are not directly affected. We have all lost friends who did not - or could not - support us, which was hurtful. This adds to the feelings of being alone. We feel apart from those around us.

 

Many of us describe that we prefer to spend time in our own company and that this makes us feel “lonely - but safe”. We don’t feel the need to put a smile on when we feel so alone, even in company.

 

For some, the physical reality of breast cancer exacerbates the feelings of loneliness. Some have retired from jobs we enjoyed and miss that purpose and connection with our colleagues. Symptoms such as fatigue mean some of us cannot participate in activities we used to love and this makes us sad - missing out spending time with others makes us lonely.

 

Almost all of us find that being in the company of others who have been diagnosed with cancer allows us to talk honestly about our feelings. There is a sense of connection and common experience in spending time together - either in a local support group or in a virtual group. Nearly all of us agree that our mutual support eased loneliness and many of us have found firm friends in this way - people who “just get it”.

 

   In BRiC,  we realise we are no longer alone - we hold hands together.

 

The Lonely Poem

 A silent holding of hands

A listening ear

Is that too much to ask for?

They don’t want us to talk about our cancer

Our friends fall away

They block us out

Put distance between us

So much time alone at home,  recovering from our treatment, not just alone, but lonely

We see our scars every day

But we can’t talk about it.

Others don’t get it, they don’t get us

They change the subject

‘But you’re ok now, aren’t you?’ they say

We’ve given up trying to explain

Our emotions belittled because they feel uncomfortable

We hide our feelings to protect our loved ones

We didn’t know it was possible to feel so alone and yet be surrounded by love and people

We feel like ghosts

Not able to be our real selves

We hold back, hold it in, hold on

Deny who we are 

Our cancer is part of us now

We don’t really know who we are anymore

It’s the whole effort of figuring it out, not burdening people with it,

Yet lacking that connection because we can’t explain it

Sometimes we self-impose isolation because we don’t feel 

Important enough to take up other people’s time

And we find it hard to accept support

A lonely place to be, especially at night when the pain is bad

And our minds are working overtime

Are we responsible for our own loneliness?

We’re not OK

We want to be allowed to not be OK

We want to be acknowledged

But they are bored of our journey, living with the legacy

And no-one understands this inbuilt fear

The loneliness of our thoughts

So busy fearing the future that we aren’t living in the present

We’ve learned it’s ours to carry alone,

We withdraw into our little lonely bubble 

Our loneliness a constant companion

Alongside isolation, fatigue, boredom, silence, regret

Where is our joy?

Where is our excitement?

We carry this huge secret,

We want to shout out, ‘if only they know what’s going on inside me!’

We are scared, we are alone, we are lonely in this new world

We walk alone.

Yet there are a few of us, who have limited time left

Who have never felt less alone.  We are blessed to have devoted family 

And our happiness may seem inappropriate

Are we in denial? Or just acknowledging our real feelings, 

Rather than the emotions the situation would seem to demand?

Does it even matter?

For others this is a terrible time,

Thinking about death, we try to be part of the crowd, the living,

But we are sad and lonely there. 

We cling to each other, our cancer friends,

The ones who’ve been there, the ones who understand

Sharing our loneliness through our honesty

And when we reach out to those who understand, we build a bridge

And for a time we can feel less alone

As Joseph Conrad said, ‘We live as we dream, alone.’ 

Alone at night, afraid of the future,

But with hope 

We’re finding our way now

And other special people become our friends

In our parallel world

Our virtual safe space

To be whoever we want to be, and know we are not quite so alone

Guilt

 

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

 

Naz found little research carried out on guilt in the context of cancer, but because guilt and shame are known to be risk markers for depression, they have been studied implicitly in depression. With the exception of a couple of studies, there is hardly any evidence or very little related to 'guilt' in breast cancer.

    

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

 

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

 

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

 

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

 

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

 

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

 

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

 

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

 

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

 

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

 

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

 

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

 

So can guilt ever be made to disappear?

 

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

Post-Traumatic Growth: Growing from Trauma

 

“We think of resilience as toughness, but it is not. It is sensitivity, it is the ability to shape and grow into a new being.”

Post traumatic growth is a concept which refers to the possibility of 'growing' and learning from the trauma that we have endured as a result of (any) cancer diagnosis - we re-evaluate our priorities, our values, and find a deeper gratitude and appreciation for life.
    
    We thought about the way that our experience of primary or secondary breast cancer had changed us. Many of us felt our lives had changed positively, for example, we have a greater appreciation for who we are and ‘our lives' feel 'better', 'richer' and more meaningful. Overall, we have discovered a new and deeper appreciation for many of life’s simple pleasures, things we had taken for granted before our diagnosis, maybe being in nature, or, in the company of our families or good friends.

    Some of us feel we were kinder, more self-compassionate, wiser and empathetic. We stop “sweating the small stuff.” We become more assertive, more confident and less apologetic. We shared examples of speaking up, setting boundaries in a stressful work environment, changing and leaving toxic jobs, or toxic relationships. Some of us have developed new interests and skills; maybe we have found ourselves wanting to learn and study or we had found ways to express our creativity, perhaps taking up new interests. Friendship and the chance to make new friends was particularly valued as an opportunity for pleasure and growth.

    Many of us share that we have reconnected with our values, perhaps finding a greater appreciation for 'normal life', home and family, whilst others had experienced a shift in values, perhaps becoming more adventurous or willing to take risks. We open ourselves up to new experiences, doing new things, including things we have never before had the courage to do.
    
    Resilience, Naz tells us, is a concept that is derived from growth post trauma. We think of resilience as toughness, but it is not. It is sensitivity, it is the ability to shape and grow into a new being. A being that is not like the ‘old’ person we were, but where we find an acceptance of the changes, the losses that we endure as a consequence of our trauma. Naz told us that she finds it helpful to see vulnerability as an opportunity, a platform to fly from and to explore what we can make of the changes, the restrictions and the fears, to find what we can reclaim.
    
    Not surprisingly some of us feel more cautious about attributing gains to our experience of cancer - particularly, but not only if our losses are still raw and painful. We reject the idea that cancer is a gift or a teacher. We all know that there is nothing positive about any cancer diagnosis and its impact on us is profound, and for many of us, long lasting. It takes courage to face out trauma, and we need to do this in our own time. Here at BRiC, we do not turn away from the harsh realities of our experience and our treatment. We know all too well that we are tired, fatigued, and our cognitive functions are running low. We also recognise the ongoing challenges women with secondary breast cancer face. Could we, some of us wondered, be at risk of placing unrealistic expectations on ourselves to 'grow' and learn from trauma in light of these challenges?
    
    As we have said before, there is a crucial difference between recognising that we can come through the crisis of cancer, resilient and strong, and, coming to the view that we are resilient and strong because we had cancer. It is what Naz termed, the ‘clever me’ which is inside each of us and can turn the experience around to our advantage. Even though we have less control as a result of our breast cancer, we can use that vulnerability as a stepping stone to take back control where we can. It is even possible that post traumatic growth might help us, it might make our journey through trauma easier.

    Our discussions highlight the importance of avoiding a prescription or a blanket definition that applies to everyone, and we should instead strive towards our own path. Post-traumatic growth does not mean that we will be entirely free from the painful memories of what has happened to us. Our experiences and grief and the challenges we face are part of who we are, not something to be pushed away. But, we can talk to ourselves kindly, and we can learn to accept and understand the significance of our experiences and feelings in ways that validate our responses so that we live our lives more meaningfully. We can learn to see ourselves, and I mean, really see ourselves, in all our flawed and imperfect beauty.

    We are all learning to acknowledge the importance of self-care, an integral component of which is the importance of listening to our bodies. This includes looking at the people with whom we are surrounded and taking active steps to ensure there is mental and emotional distance between ourselves, and any toxic behaviour from others.

    Being a member of BRiC provides a wealth of support. This includes help to give consideration to and gain an understanding and awareness of, the psychological impact that a breast cancer diagnosis has upon us. Learning to ‘understand and piece together the fragile pieces that make me up’, summarises so well the help we need to embrace ourselves unconditionally and with self-compassion. Our pieces may well have been put back differently but within that, there is room for growth.

Don't Sweat The Small Stuff: The Other Side of Cancer

 

For many, it’s about living life to the full, appreciating all the good things and being grateful for all that we have. Living one day at a time, in the moment. Realising that life is something we want, no matter what. For others, despite anxiety, worry and overwhelm being features in our lives, there’s a renewed desire to live our best life, a clarity of vision like having a new pair of glasses. What we want - and perhaps equally importantly, what we don’t want - becomes clear and our goals crystalise before us.

 

Many of us struggle to say No but we’re learning, and once the word is said (the hardest part) everything falls into place, and this gives us confidence to be more discerning in what we sign up to. Some of us also want to say Yes more often. We aren’t used to asking for help, for going for what we want, again we’re learning. Making a fuss is ok, we matter. We are important, and we are enough. We can look after ourselves, put ourselves first, treat ourselves with compassion and love. We can be assertive whilst retaining our empathy and we recognise that we can actually look after others better when our own needs are met first.

 

Simplicity features for many members, in finding pleasure in small everyday things, feeling the love of family and friends, finding beauty in nature.

 

Many of us are finding ways to turn negatives into positives. We might be used to being the organiser, the one who pulls friends together for outings, and this might feel one-sided. However one member’s friend said to her ‘you are the light for those people who struggle to engage’ and so she can now see her role changed as a positive one. Other examples include being thankful for our lives rather than worrying about getting older, and appreciating our bodies, scarred though they may be, for what they do for us rather than for what we look like. We no longer take our bodies for granted, and we understand that our bodies and minds must be nurtured in order to flourish.

 

A phrase used by many of us is ‘don’t sweat the small stuff’. We find it easier to let go of trivia, to work out what matters. Many of us are more outspoken, prepared to stand up for what we believe in. We will not perform for others or be led like a sheep. However some of us find we are more sensitive than before cancer, although generally we worry less about the opinions of others. Many of us find we slip into old ways very easily, and when we are aware of this we may pull ourselves back but we don’t beat ourselves up about it.

 

There is a sense that we have slowed down, taking more notice of the world and people around us, but at the same time considered carefully what we want to do with our lives and sought out opportunities to make those things happen. We live more consciously rather than just letting life happen to us.

 

Of course we all have down days, when we feel low or unwell. We are wise enough to know that these will pass, and that in order to know our joy we must also experience our sadness. We are not glad we had cancer, but some of us believe it has made us a better person. New friendships are a key positive for many of us, and having the courage to move away from toxic relationships.

 

One member described herself as having become very ‘feelingy.’ Feelings may become more intense, our sensitivity to what is going on around and inside us heightened. Alongside this comes perspective and peace of mind. We have a desire to feel the full range of emotions and to build a happy and fulfilling life. Some of us have a disassociation with ourselves, feeling as though we are watching ourselves going through life, particularly our cancer treatment. We may want to change but perhaps we haven’t yet had time for what we’ve been through to sink in. Our members are at different stages of their cancer, some recently diagnosed and in active treatment, some many years beyond primary, some living with secondary cancer.

 

We recognise that our time on earth is short, and that it’s up to us to enjoy what we are given. We know that worry is fruitless and that we won’t look back on our lives wishing we’d worried more. We know that sharing our experiences helps us all.

 

Avoidance: Repression and Suppression

To repress means moving something painful away from conscious experience. In fact, the brain does this automatically when the emotional pain is too much to handle. Avoidance, distraction, replacement, dissociation, all involve repression. When practiced, it becomes a habit and we do it almost spontaneously.

 

Naz told us about some work she had previously done to try and understand the brain and physiological mechanisms behind repressive coping, a coping style used by people who believe that they are not anxious, but physiologically, they still may show signs of anxiety, especially in stressful situations. When we use repressive coping we are using an avoidant coping style to deal with stressful and upsetting experiences.

 

Does Repressive Coping Help?

 

Research on the brain shows that people who repress, and downplay their emotions, process even greater levels of threat sometimes greater than those who report high anxiety. Avoidance also weighs heavy on brain networks. So, physiologically there are signs of distress.

 

Repressive coping is regarded a possible risk factor for physical disease as well as a consequence of chronic illness, and as such is very relevant in breast cancer. Repressive coping is linked with cancer, cardiovascular disease, crohn’s disease, hypertension and so forth. While most of the evidence is correlational, recent work is trying to establish a causal relationship, especially with chronic stress.

 

Our members discussed how they’d used repressive coping. Almost everyone agreed that they repressed and hid their true feelings and fears at time of diagnosis and through treatment. Many of us felt completely numb, due to the shock, in fact we didn’t know what we were feeling. Numbness is another form of repression. Through time however, the repressed feelings are rising to the surface. We can feel confused. We become aware of those feelings but we find it difficult to deal with them. There are mixed feelings. We feel mentally exhausted, fatigued, we are fearful of crying because ‘I may just cry forever’, ‘I just want to scream’. The pain is difficult to digest, and so it may express itself through ‘mini melt-downs’, ‘not coping with side effects efficiently’.

 

The brain can learn how to let go, and help us regulate our emotions. Repression brings rigidity, and hinders brain plasticity. Talking helps, writing helps, exercise helps. Breathing helps. Crying is a good release. Reaching out for help, helps! Facing our fears and embracing them can work. Many of us reported that counselling has helped, but the process of healing for some of us can be longer. What we agreed on is the awareness of those feelings, and that is a major first step.

                                      

So, the question of whether repressive coping works or not has an easy answer. Sometimes repression can work in the short term, but the longer term effects on our physiology take a toll.

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.