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 is only one Secondary Breast Care Nurse in the whole of Wales. 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

 

Our discussion 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 spoke 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, 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 - 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.

Grieving, 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 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

We tend to think of anger as a wild, dangerous emotion. A feeling to avoid. An emotion to suppress. But, Nazs asked us to think about whether we could use our anger to build our resilience, to help ourselves and each other?

The Anger Poem

We are angry at the loss of control that cancer brings
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 that we got cancer when we're healthy and fit
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

We may be angry that we are changed by 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 cancer makes us vulnerable 
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.

If we let anger in
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 when people tell us that those of us who didn't have chemo are lucky
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!

We may be angry at the state of the world
Angry about injustice
Angry about politics
Angry about balloons that harm innocent wildlife
Angry about big things, small things, everything, just so angry

Some of us experience a delayed reaction, feeling anger months or years afterwards.
Maybe we displace the emotion - we get angry with our mother-in-law or colleagues

A few of us prefer the cloak of acceptance 
Letting go of emotions that waste our energy

Whatever our position, we work towards resilience, healing 
And finding peace, not waging war with our bodies and minds
Cancer is not a battle
That we fight with our anger

We cannot change what has happened to us
We can channel our anger towards helping others
And towards helping ourselves

Anger can help us reach our goals
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 make us productive
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 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 recurrence or secondary breast cancer.

 

Our women with secondary 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 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 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.

 

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?

Anxiety - The See-Saw of Fear

‘None of us will ever forget the earth-shattering day when we were told ‘it’s cancer’. From that day, things change’.

 

In women who have all been diagnosed with breast cancer you might expect our experience of anxiety to be high. Discussion on anxiety in BRiC loom high. We have all experienced anxiety in some form or another, either throughout our lives or since our diagnosis. Anxiety around recurrence (for those with a primary diagnosis) and progression (for those with a secondary diagnosis) is never far away. Every pain we experience, every test, scan, routine mammogram, produces anxiety. A cancer diagnosis may trigger anxiety caused by earlier trauma, which we may previously have suppressed or coped with well.

 

What does anxiety feel like? A racing heart, sweating, butterflies, a fuddled head, an uncomfortable adrenalin rush. Gut churns, tummy knots, heart palpitations. A feeling of hot and cold that washes over us from head to belly and back again. Some of us have an urgent need for the loo, others are physically sick. Panic attacks can be the result of anxiety and often occur with no warning, in the most ordinary of situations. They can be frightening and debilitating, and the anxiety grows and fuels the fear, so that we don’t want to go out in case it happens again. Anxiety can make a huge dent in our self-confidence, and can affect our work, our relationships, our social life.

 

Anxiety can also be exhausting, sapping our energy. It can manifest as rashes, rosacea, fire on the skin, tinnitus, headaches and other aches and pains, fatigue, procrastination and insomnia. We may feel faint or pass out. We may feel emotional, on edge, tearful. We may feel we are doing fine and then our symptoms creep up on us or suddenly appear. Feeling very unwell due to anxiety may be connected to our bodies letting us down at various times in our lives, not least our cancer diagnosis. Many of us are aware of a low-level undercurrent of anxiety which we ignore, we are good at coping, just getting on with it, but at what cost to our mental health? Some of us grew up in a family where expressing our emotions was frowned on, and this can affect how we cope in our adult lives. Severe anxiety can make us feel we are alive but not living. Ongoing severe anxiety can cause physical illness including weight loss.

 

Some of us mentioned that our anxiety hits us at inappropriate times, perhaps while we are at work, and we have learnt to shut it away. However it will appear later, and sometimes will be stronger after a period of denial. We may find we have flashbacks to our treatment, and our fear is always at the back of our minds. Anxiety makes many of us feel weak and helpless, and it’s hard to remember that our anxiety is not our fault. Some of us feel most anxious when we wake in the morning, and this might be very early, or late at night preventing sleep. We find it hard to summon up defences at this time of day. It takes a strong resolve and huge self-compassion to face the day with courage when we start it this way.

 

Many of us take on the worries of others as well as our own, particularly within our families. We find ourselves experiencing anxiety about their problems. We may also find that our loved ones have no patience with our anxiety and don’t understand. ‘What became apparent was that people understood the impact of cancer more than they did anxiety’. Many of us worry about how our loved ones will cope without us, particularly pertinent for our women with secondary breast cancer. Focusing on the present can help us to get past this. Practising control over the things we can control and accepting and letting go of what we cannot is a useful mantra.

 

Lots of us have come to terms with the fact that we are natural worriers, and a light-bulb moment may be when we accept that it’s ok to worry. This recognition can help us to take steps to alleviate our anxiety. If we acknowledge how we are feeling, we can then ask for help. Groups like ours can really help us to realise we are not alone.

 

Naz explains the way the brain adapts to persistent fear, preparing the body to expect danger and meet it, triggering the primitive flight or fight response - to run, to fight, or perhaps freeze. We are, by default, vigilant. She used the image of a see-saw to explain the way the cognitive and emotional brain systems interact. At one end of the see-saw, in an anxious state, the emotional system dominates and weighs us down. At the other end of the see-saw, the cognitive system lets go to prevent becoming overwhelmed. Resilience can strengthen the cognitive system to gain weight as it moves towards calm and rational thought, allowing the see-saw to swing back into balance. This is not about numbing, controlling, or avoiding, but a robustness which promotes neural plasticity and supports good communication between the cognitive and the emotional brain systems. Resilience helps us to bring flexibility to the see-saw. It is a key adaptive factor in coping, indeed to survival, and Naz’s research is highlighting the possibility of building a ‘cognitive vaccine’ to protect against the damaging effects of anxiety.

 

Here is ‘the science bit’, copied verbatim from Naz’s introduction. It adds illuminating background to the discussion and deserves to be read in full by a wider audience as it was so helpful to our members.

 

Understanding anxiety and how to manage it. (Naz)

 

According to the World Health Organisation, anxiety and depression are the biggest disabilities worldwide. In an era where we are washed with therapeutic techniques, and all kinds of ‘tips’ this is highly worrying. Personally, I think it is largely because we haven’t taken time to understand the nature of our anxieties, why they are there and how they affect us.

 

The first book I ever read on ‘Anxiety’ was: “Understanding Stress and Anxiety” by the late Charles Spielberger (the father of Anxiety Research) whom I was fortunate to meet and receive the Young Scientist and Early Career Award from, back in the early 2000s from the International Society for Research on Stress and Anxiety. I was 13 when I read his book, the first of dozens I ended up reading, and it was then I knew that I wanted to do a PhD on Anxiety. I have since spent over 25 years studying Anxiety, its origins and nature, its neural underpinnings, and its behavioural and physiological manifestations.

 

Anxiety is a prolonged response to acute as well as chronic stress, some say its “prolonged fear”. It is fuelled with uncertainty and a main feature of it is worry. Many physiological responses come with anxiety and these can persist even when the source of stress isn’t there, this is mainly because the brain processes threat really quickly outside of our conscious awareness. So the experience of anxiety can be triggered unconsciously. Anxiety is not something we can easily control or put a lid on. It is the result of an interaction between the stressors we experience, our coping strategies (e.g. avoidance of anxiety can backfire and intensify it), as well as the level of control we have over the situation and the stressors we experience. It is also a result of a long learning process of how we have responded to stressors in the past. In large amounts, anxiety can be crippling, and prolonged anxiety is known to lead to depression.

Counter-intuitively, anxiety is a protective response, its origins are there to protect. So, some anxiety is good, it's beneficial, it can protect us from danger, fear can motivate us. It is saying that we must do something about the situation. The brain responds to fear really quickly because of its survival value, it has a preparedness to process danger.

 

When we have little control over what we CAN DO about the situation we are in, anxiety exacerbates, the intolerance of uncertainty fuels anxiety, and we can experience unnecessary escalating levels of anxiety. When we are diagnosed with a life threatening disease it is normal to feel anxiety, and we live in the anticipation of the ‘what ifs’, when we have little control over the outcome. Research shows that breast cancer increases risk of anxiety significantly. A balance needs to be in place to regulate our anxieties so that we can experience them in moderation. Scananxiety is a big one, then there is the wait for the results, there can be relief or increased apprehension depending on the results and I’m sure you can come up with more examples.

 

If, like me, we have a predisposition to experience anxiety (either through traumatic experiences of the past or the like) then we are likely to experience anxiety provoking situations with greater intensity. Generalised anxiety (or free floating) can at times be debilitating. People who have a tendency to worry, feel anxious without being able to pin down the exact source of anxiety – this is much harder to manage.

 

Balancing anxiety is a tricky act. There are lots of therapies and tools we can use to our advantage to relax, in essence what we are doing is targeting the symptoms, not the cause as the cause is hard to tackle and often a mixture of things. There is no right or wrong way but a good behavioural approach can help. Consistency in how we tackle anxiety, acknowledge it, take time to understand it and how it is affecting us is important. Dampening it or avoiding it is not helpful, because it has emerged for a reason! Mindfulness meditation if done systematically can lower anxiety, so can cognitive training as we are building our cognitive systems to regulate our emotional brain systems. In fact research shows that both cognitive training and mindfulness-based meditation interventions independently can lower anxiety related symptoms longer term.

 

If we f    eel anxious, we do not need to beat ourselves up for not being able to cope, far from it, it is when we need to love ourselves more than ever, be kind to ourselves and each other and not judge. We can be broken, we can be hurt, we may not be able to access our resources and we may be lacking in resources. It is not our fault. It is ABSOLUTELY NOT OUR FAULT.

How to Cope with Anxiety

Our strategies and coping mechanisms were wide ranging and include the mindfulness and meditation. We talk to counsellors, therapists, friends. We learn CBT techniques and undertake inner child healing. We receive and practice Reiki. We practice yoga, focus on our breathing, visualise and take ourselves to a safe space, finding fond memories of when we were happy and safe calming. Aromatherapy helps to relax us. We go outside and find nature and fresh air revives us. Tapping is a useful tool for some. Reminding ourselves that anxiety is an ongoing process is also useful, it comes and goes. In mindfulness terms, this too shall pass. Although of course it may also return another day. Medication also has a place in helping us to feel better.

 

Many have had ongoing therapy to address trauma, which can be very helpful. We may learn that avoidance fuels our anxiety rather than calms it, and we can try to face our fears by asking ourselves: what’s the worst that can happen? Life can prove to us that what we worry about often does not come to pass. However, anxiety can still dominate even after we have learned about our triggers and after we have practised alleviating strategies. Our subconscious brain brings us more anxiety, and we may have no idea where it’s coming from.

 

Some of us have tackled anxiety by challenging ourselves, by facing our fears. However when we do this we may find that although we get through the activity that makes us anxious, it doesn’t make it easier the next time we do it. This means that some of us see avoidance as a perfectly valid strategy in some situations. We seek to understand our anxiety and when it arrives one day without warning, for no apparent reason, we are frustrated not knowing what’s going on. On another day we feel ok and function without undue anxiety. Anxiety does not seem to present itself consistently or logically and this can make us feel stupid and out of control.

 

Practising self-compassion and self-kindness can be very useful with anxiety. It helps us to realise we are not weak or useless, our anxiety is not who we are. Perhaps we must try to live alongside our anxiety, even befriend our anxiety, rather than searching for a fix. We can learn tools and techniques, we can work out our own life lessons through counselling or experience. Fighting against our anxiety is common, we start to think there is something wrong with us, we may have been told this in our past. We want to make ourselves ‘right’ and we don’t know how to do this, despite our learning, and so we end up more anxious. In these situations, recognising when we are being hard on ourselves is key.

 

In BRiC we have shared our coping strategies: mindfulness and meditation, deep breathing, practising realigning thinking by keeping an emotional diary, simplifying our life by reducing responsibilities where possible, taking time for ourselves and practising self-compassion and self-soothing. Hobbies, exercising and being outdoors and in nature can also help. One suggestion was to focus the attention on something else – drinking a cool glass of water through a straw with closed eyes. Another was to embrace our anxiety as one would comfort a fretful child.

 

A question was whether breast cancer had caused or heightened our anxiety because we face our mortality or whether, because it leads to a change in our values, an increased sense of what’s important to us in our lives. Letting go of things that are no longer important and discovering who are in the aftermath brings another set of challenges.

 

We are changed by cancer. We can never ‘get over’ it. We can learn to live alongside it in some sort of harmony, with the see-saw constantly moving, but gently tilting back towards equilibrium as we practice self-care.