BRiC for Breast Cancer Awareness: Karen's story

Even before the pandemic, my recovery from breast cancer had left me feeling isolated, low. Living alone and without a full-time job, I drew my energy from social meet-ups with friends and family. I filled my diary with fun, with adventures and treats to look forward to. It was how I managed my low mood and loneliness. Then Covid struck and travelling across London for hugs with my mum, coffee with friends or fixes for my escape room and theatre addictions were ruled out. As winter approaches, as the days grow shorter and darker, as new covid restrictions bite and as worries about cancer recurrence niggle, I fear for my mental health as I spend the gloomy winter months alone.

- Karen

#BreastCancerAwareness

#octoberbreastcancer

#breastcancer

#BRiC

#secondarybreastcancer

#pinkoctober

#breastcancersurvivor

#covidandbreastcancer

'Breast Cancer Nurses can make all the difference' - BRiC's Collective Voice

A recent Sunday discussion was our Breast Cancer Nurses, our BCN as we know them; our expectations and our experiences with them. For many people the BCN is the first person you talk to after hearing your diagnosis, they immediately become a major part of our lives, from a stranger to someone who knows our most intimate feelings in a matter of moments.

We heard that for one of our members the breast cancer nurse said the most important thing to them “It’s not your fault” – guilt is a very real and debilitating emotion and in those first hours and days after a diagnosis it’s natural to wonder what we did to deserve this, to blame ourselves for the trauma we are putting our loved ones through, for the prospect of the months of treatment ahead and the worry about what might happen. Having someone there who understands and tells us it’s not our fault is a huge relief and vital in those early days.

But our experiences weren’t all good, in fact they range from the wonderful to the diabolical and everything in between. From hugs and hand holding, to arranging appointments and giving factual information, they have so much to offer us through the minefield of diagnosis, treatment and beyond. For those who had a good experience this person was invaluable, many members said they wouldn’t have got through it all without their BCN. For those whose experience was less than positive there were stories of nurses who dismissed their fears, who didn’t return calls, who had “favourites” and would blatantly ignore some patients and spend time with others. Many of our members noted that the breast care nurses were overworked and stressed, they had large caseloads and just weren’t able to give each patient the time they needed. We heard from the perspective of a nurse who told us how it affects her emotionally and leaves her drained at home. It seems the support the BCNs receive is perhaps sadly lacking, it must be hard for them to be supportive when they are overworked and under-supported. It was clear from many of our experiences that the nurses didn’t always have time to provide the service they wanted to.

A point which came up several times was the lack of BCNs who specialise in supporting women with secondary breast cancer. Our private group has ladies with both primary and secondary diagnoses and for those with secondary breast cancer the majority had been left with no support. It takes a very special skill to provide the level of support needed for someone who has been given that news, their needs are different, as are their fears and worries. Members related feeling abandoned and alone, that their BCN simply seemed to walk away as soon as they heard. In some places determined campaigning has brought about the introduction of secondary breast cancer nurses, dedicated purely to providing a service for those ladies. It has been a long hard road, but where it has happened it has proved an immense support.

Some people found they were helped and had better relationships with the nurses in the chemotherapy unit, there were lots of stories of great relationships developing over the span of treatment. Perhaps because those were scheduled appointments and we are sitting for often long periods, able to chat and get to know each other.

The age and experience of the BCN also had effects on how the relationships work, some older nurses came across as knowledgeable and caring, others seemed jaded and to have lost their interest in the role. Younger BCNs were often bright and helpful, but perhaps didn’t have the knowledge to provide the answers we so desperately need, others made up for lack of experience with enthusiasm and a desire to help.

The range of our experiences showed us just how important a good breast cancer nurse is; someone who understands the physical and emotional effects, who can offer honest, factual information, but also be a shoulder to cry on or the giver of hugs, who doesn’t just hand out booklets, but really explains the treatments and options, who can liaise with the medical team and be an advocate for us, or just a friendly face. Cancer is a lonely place and it is invaluable to have someone there with us.

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.