BRiC's October 2020 Project

 

'Collateral damage by COVID19 increases anxiety and depression in women with breast cancer'. Obvious as it may seem, the implications for quality of life run deep, and government action is necessary to protect against escalating vulnerabilities facing us.

With the diversion of NHS resources to COVID19, BRiC's October project 2020 raises awareness of the psychological trauma affecting women with breast cancer. Our recent research demonstrates this clearly.

Throughout October, we will be showcasing our members' diverse and rich stories of how they've been affected, and raises awareness of the risks to our longer term mental well-being.

#BreastCancerAwareness

#octoberbreastcancer

#breastcancer

#BRiC

#secondarybreastcancer

#pinkoctober

#breastcancersurvivor

#covidandbreastcancer

#BreastCancerAwarenessMonth

Imposter Syndrome: Are we ever good enough? BRiC's Collective Voice

 

Our Sunday discussion, a fascinating topic suggested by Bex, one of our ambassadors - Imposter Syndrome.

Naz opened the discussion with a brief explanation; telling us that when we doubt ourselves, feeling inadequate or incompetent, despite evidence to the contrary, that we may be experiencing Imposter Syndrome.
It has been shown that women experience this more than men and even though gender inequalities are gradually decreasing, seemingly strong and successful women often feel inadequate, as if their lives are based in fraud. Michelle Obama referred to imposter syndrome as her weakness.
These feelings can be intensified when we are faced with trauma, such as a breast cancer diagnosis.

Side effects from breast cancer treatment often leave us with problems which add to these feelings, memory loss, brain fog and concentration issues, fatigue and restricted mobility can all leave us feeling less able than our colleagues and friends. Long absences from the workplace may create fear about how we will cope when we return; we might feel we are failing as mothers because our illness prevents us from doing many things, or that we are letting our friends down when we can’t keep up with social engagements.

The trauma of breast cancer can bring back memories of previous difficult experiences, such as childhood events and toxic relationships; these memories can so easily lead us to a belief that everything is somehow our own fault, that we are not worthy of a better life or capable of success. Many of our members talked about doubting their abilities so much more after their diagnosis and treatment, despite holding down jobs, caring for families and leading busy lives. Our self-doubt is contrary to what we actually are, but it raises its ugly head on a regular basis. We worry about making fools of ourselves, about making changes, trying new things or forming new relationships.

We talked about how being compared unfavourably to others compounds these feelings. Many of us recounted incidents from childhood where we had been made to feel less worthy than a sibling or classmate, being told we were no good at something or would never amount to anything. Incidents we had long since forgotten, or locked tightly away in our minds, were brought back into life by our diagnosis and life with cancer. Our group has members with both primary and secondary diagnoses, for members with a secondary diagnosis there were the additional problems of on-going treatment restricting what they can do and of people treating them differently, as if their views were somehow less important because of their cancer. Other members said they almost felt like cancer imposters because they had been able to avoid chemotherapy or radiotherapy and as such felt like they were somehow less of a cancer patient.

There was an underlying belief that the way we are treated by others is somehow a reflection of ourselves, that we don’t deserve any better. “Nothing I ever did was good enough” was a phrase used often, and is a feeling that can stay with us throughout life, affecting everything we do. We talked of waiting to be found out, that our public persona was hiding our incompetence and any moment someone will see us for what we really are. Another common theme was difficulty accepting praise; equally many of us mentioned that criticism hits us hard, bringing to the fore those feelings of incompetence and inadequacy. When criticised we feel that we have been seen for what we really are, that our fraud has been uncovered and we can no longer feign competence.

Some of us have found ways to build our confidence, to give no credence to the opinions others hold of us, to be our own selves and be proud. It is often easier to believe the “bad stuff” about ourselves and we are all learning to also believe the good. We are strong, we are successful, we are perfectly imperfect, we are businesswomen, mothers, partners, teachers, managers, artists, dancers, singers and many, many more things. We make mistakes, but that’s OK, we can learn from them and grow even stronger. We are not inadequate or incompetent and we are supporting each other to build our resilience and fight that imposter.

#BRiCteam

#breastcancer

#impostersyndrome

Picture this! BRiC's top movies!

Picture this!

Our Sunday discussion this week focused on ‘Movies’ that have had a big impact on us, leaving an everlasting impression in our lives.

Movies can be a powerful catalyst for healing and growth. In fact, for anybody who is open to learning how movies affect us, movies allow us to use the effect of imagery, plot, music, etc. inspiring us in so many different ways.

While movies have been thought as therapeutic and sometimes are prescribed by therapists, this is often self-administered. Movies have the power to change the way we think, feel, and ultimately deal with life’s ups and downs. As such, they're invaluable and enjoyable.

So how can watching movies that mirror our own struggles or experiences help us?

Watching movies encourages emotional release. Some of us often have trouble expressing our emotions and might find ourselves laughing or crying during a film. The release of emotions can have a cathartic effect and also make it easier for us to become more comfortable in expressing our emotions, which is can be invaluable during counselling as well as in “real life.”

Sad films have the ability to make us happier, whilst might seem counter-intuitive, many of us can relate to this. After watching a particularly sad or distressing film, we can feel thankful for our own life and we can be more appreciative of everything good in our own lives.

Watching movies can help us make sense of our own lives., for many years, knowledge and wisdom have been passed down through the art of story-telling. Stories offer us different perspectives and help us understand and make sense of the world, so in our eyes movies are stories, which gives us a break from whatever is currently bothering us and we can for the moment be transported to a different time and place and can focus on the ‘now’ for a short time, this gives our brains a much-needed rest from “the usual”. Movies bring us a huge sense of relief, even if they stress us out at first, watching something full of suspense releases cortisol (the stress hormone) in the brain, followed by dopamine, which produces feelings of pleasure.

Some of us choose movies that relate to our cancer journey, sometimes the stories relate to other personal experiences and encourage us to live life to the full.

Our members have enjoyed watching the same movie(s) many times, as it gives us the much-needed relief and lets us loose ourselves for a short time, away from the day to day challenges.

Attached is a list of movies that our members have enjoyed watching, each movie means something special to us. It may remind us of a particular time or a special achievement, maybe a certain event that we can relate to with a mixture of emotions, i.e. crying, laughing, fun and feeling good about ourselves.

We are worth it!

"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.

The art of healing explained: BRiC's Collective Voice

Healing - the art of Kintsugi

In our Sunday discussion, we talked about healing and what that might mean within the context of living with breast cancer. The diagnosis and treatment of breast cancer leaves us scarred both physically and emotionally.

Naz explained that, for some of us, the physical damage from breast cancer and its treatments is long lasting, especially for those of us with secondary breast cancer who are living with this incurable form of the disease. She felt that in this context, physical healing might not be apt and so we concentrated on what healing might be in terms of the emotional aftermath of a diagnosis of cancer and how it affects our soul, spirit and motivation. This led to a powerful discussion of what healing might mean for us.

The trauma of a diagnosis of breast cancer was likened to post traumatic stress disorder (PTSD) by a member with close family experience of the condition after military service. So, how best to move forward in the light of such psychological damage? Many of our members believe that one powerful route to healing is acceptance of how we have been changed after diagnosis, both physically and emotionally. There is a strong sense that accepting our “new normal” is not the same as resignation or “giving in”, rather it gives a sense of peace. Being at peace with ourselves gives members a feeling of “being able to breathe” and for others, allows time to grieve for the changes to our previous selves.


Making peace is not just for ourselves. Common anxieties are the harm and the sadness our illness causes to our loved ones, especially for those of us with secondary cancer. Being at peace with ourselves means letting go of the guilt that our illness causes pain to others and, for some, allows those difficult conversations about the reality of death. Making peace acknowledges that we can feel sad and that our family members can feel able to feel sad too - and that it’s OK to feel that way.

It is not always easy to reach acceptance. Feelings of anger and fighting against our reality is common and is exhausting. Some feel that we are not helped by the language of breast cancer - described as “toxic positivity” by one member. Terms likened to fighting a battle and winning a war causes emotional distress, especially for those of us with secondary disease where the battle will never be won. For others, physical symptoms such as pain or fatigue cause a direct affect on emotional wellbeing. Many of us have multiples worries, not just cancer and it can be hard to separate those apart. Suffering multiple traumatic events in quick succession taxes resilience and is especially hard.

There is a strong feeling that healing does not happen in a linear progression but come in fits and starts and in many directions. It can be unravelled when we are taxed by new challenges. The phrase “Two steps forward, one step back “ was used by many. One of our members has a helpful reminder to tell herself of impermanence - that such feelings are not permanent.

An important step to healing and acceptance is to “self care” - making space for grieving, being kind to ourselves, saying “no” to others if needed and using grounding when it all feels too much. A member describes how she looks up at the sky and takes a deep breath. Some of us have found counselling and psychotherapy helpful. Self compassion is important. One member describes how her family upbringing has resulted in her feeling she must always put others first and that impaired her ability to heal herself.

It is felt that making peace with ourselves allowed a deeper connection with those friends and family members who are able to simply be with us. It can be a relief to stop trying to protect others and trying to do this alone.

One of our members introduced us to the Japanese art of Kintsugi, the art of mending broken ceramics by adding gold into the glue repairing the breaks. The analogy that broken parts can be made beautiful hit a chord with our members. We liked the idea of not hiding our scars but embracing them. One member told us that this meant she will be “enjoying my beautiful wonky life”.

Making peace with ourselves. Healing. Sometimes the process can be helped with the support of others who understand.

Aware of cancer, but not defined by it! BRiC's Collective Voice

Our Sunday discussion focused on how can we be aware of our breast cancer and not be defined by it?

Naz explained that a breast cancer diagnosis leaves us feeling extremely vulnerable, because these vulnerabilities are outside of our choice. We want to hide or shy away from these vulnerabilities, even though we know that cancer is a reality of ours that will not go away, we have to carry it forward by creating a balance between being aware of our cancer and not let it define us.

We have thoughts and emotions at times these can leave us frustrated, angry and anxious, they become part of us, so we learn to cope by not giving into them or to the matter of fact let our thoughts dominate and dictate our vision. Learning to acknowledge, understand, reason and deal with them helps our coping mechanisms, but that doesn’t mean they define us.

Cancer is not a choice that we decided to take on board, it has limited us and has caused psychological distress and the uncertainty has made us face our own mortality, the numerous side effects which we live with daily, have left us with a life threatening fear, so we keep marching on and try to keep working harder for ourselves, as we are often seen as being different by others.

We see cancer as something ‘bad’ which has happened to us, we feel overwhelmed with such life events and the changes experienced. Some of us see this as only one life event, we are the sum of everything else, we have to experience pain to know joy, it is part of our story and if it defines us then this depends on our choices and how we give them importance around the definition of who I/we are. It may be a label that describes us but acknowledging it gives us the power to control who I/we are.

Some of our members disliked being seen or portrayed as a ‘patient’, family/friends and colleagues mean well but often forget what we have been through, for some of us it is ok but sometimes we yearn for someone to hold our hand, a shoulder to cry on or just sit and listen to us without judgement, as we are still living with and beyond our breast cancer journey.

Many of us feel that the Covid-19 pandemic has added to our anxiety and fears for our future health and well-being. Going back to work in certain sectors is going to be an enormous challenge, we will find our inner strength, resilience and the willpower to live the best life regardless of what we are coming up against.

Some of our members found this a difficult subject as it is impossible not to have changed by a breast cancer diagnosis.

The A-Z of hospital appointments, treatments, surgeries, hair loss, weight gain and other body image visibilities when we look in the mirror, have left permanent reminders, which have had an adverse effect to a traumatic life experienced prior to our diagnosis.

Other members found this discussion topic interesting, as acceptance of a primary diagnosis was not given the attention it deserved, brushing it under the carpet and carrying on with life, after a secondary diagnosis came the realisation that we are not the invincible person we thought we were pretending to be. It makes you face your thoughts and fears, by not pushing them away, we learn to acknowledge and accept the diagnosis with compassion and kindness towards ourselves, rather than blaming ourselves. This in turn gives us the power to refuse to let it define us and the courage to stare it in the face every day, fear may take over but we do have a choice both physically and emotionally, we try to live in the moment as tomorrow is not promised.

Finding help and support is key to helping many of us, members found support groups like BRiC, yoga, meditation, exercise, mindfulness, in addition to the beauty of the outdoors and nature, breast cancer charities and many other forms of support from family, friends and colleagues.

Fear of recurrence and progression of cancer: BRiC's Collective Voice

The comments that last Sunday evening’s discussion generated, really helped to give us all an insight into the range of feelings that the fear of recurrence and progression of breast cancer creates. It was interesting to read comments from members who’ve had a primary breast cancer diagnosis, recurrence of a primary diagnosis and those who've had a secondary breast cancer diagnosis. Viewpoints from each part of the spectrum are so valuable.

Some members commented that although the 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 diminishes. However, it was 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 the group, it’s acknowledged that this is hard to manage.

Another recurring theme was that even when active treatment for primary breast cancer has finished, seemingly 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?

There was a feeling also 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 regimes 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 was referred to several times and this may impact upon our ability to cope with our anxieties and fears generally, following a diagnosis of the disease.

There was a feeling of sadness too around some of us never fully being able to feel confident about our health again because we cannot totally eliminate the possibility of recurrence and/or development of secondaries.

The emotional value of this group was also really highlighted by those of us who feel that others close to us will never really fully understand our fears because the breast cancer diagnosis didn’t happen to them. As a result, there is a shared empathy that exists within the group, which confirms the life enhancing and affirming nature of our very supportive community. This was 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. Acknowledging that this is an extremely challenging time, which has led to 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 stay 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.