Saturday, 4 July 2020

The art of healing explained: BRiC's Collective Voice

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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.

Sunday, 28 June 2020

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

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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.

Saturday, 6 June 2020

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

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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.

Monday, 18 May 2020

Mental Health Awareness Week - Naz (Founder of BRiC)

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Mental Health Awareness Week 2020.
"Slowly, quietly, never giving up"

BRiC celebrates mental health awareness week 2020. It showcases its members' resilience and coping tips on what has helped in COVD-19 lockdown stressful times.

Every day, we will be posting a few of our members' messages, in the hope to show how we've embraced our anxieties as well as taken small steps to alleviate the distress and uncertainty we've faced. How we've exercised courage to face our fears, and how we've risen to nourish the wounds we've endured as a result of COVID-19 collateral damage to our treatments. The meltdowns, the emotional rollercoasters. We share how self-compassion has helped us when we've been low.

Mental health is important. Just as we nourish our wounds to heal we need to nourish our mental health to heal from the distress it faces in scary and uncertain times.

It is not an easy task, but in the middle of every difficulty lies opportunity, and that is what resilience is about. Finding that opportunity, and to keep going, slowly, quietly, never giving up.

Sending love and virtual hugs to all of our followers and the bigger world.

Naz xx (founder of BRiC)


Saturday, 9 May 2020

The healing power of our pets: BRiC's Collective Voice

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Our Sunday discussion talked about Pets: our dogs, cats, fish, horses, and many more ….

Without exception, those of us who had or have pets emphasised how important their role has been in our well-being. ‘Unconditional love’ came top! Yes, our pets give us unconditional love, they are there for us, and listen to us without judgement.

Some of us talked about how our pets ‘knew’ something was wrong, how they sensed our vulnerabilities through treatment, they ‘knew’. They were by our side, they made us smile. They made us feel comforted. This companionship was especially noted during breast cancer treatment, where we were highly sensitive and appreciated unconditional love.

The benefits of having pets is documented by research that shows pets trigger empathy and acts of kindness. Their ‘unconditional love’ can be an excellent source of therapeutic comfort. Talking to them, listening to them, and caring for them bring positive effects to our well-being.

“My dog is the best therapy ever. I can't tell you how much we all love him. He makes me smile from the second I open my eyes. My fatigue is also lifting with all my walking 🐕 he literally is the best therapy ever 😍

Walking our pets, cuddling them on the sofa, and feeding them help us gain the motivation, to get up and keep going. They give us a reason to carry on.

Our pets give us much fun, they bring us entertainment and make us feel relaxed. Here's a preview: 

Some of us talked about the saddening experience of our own pets getting cancer, those who had to be put to sleep, and how we missed their company.

If you are a woman in the UK with a diagnosis of breast cancer and would like to join our private group please message us here or leave your name in the comments.

Saturday, 2 May 2020

The collateral damage of COVID19 on breast cancer treatment: BRiC's Collective Voice

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“Who wants to have cancer in the midst of an epidemic?”

Our Sunday discussion last week talked about the collateral damage of COVID19 on breast cancer treatment and well-being.

For thousands of women awaiting treatment for breast cancer, COVID19 has caused considerable delays and uncertainty, with many breast cancer appointments being cancelled, postponed “indefinitely”, or “until further notice”. These have applied to key operations, chemotherapy treatments, follow-up scans, appointments, well-being courses and consultations. The waiting game this has produced means that we don’t know when our medical teams may come back to us to reschedule our treatments, scans and appointments. For some however, appointments have been moved to other hospitals or done over the phone.

The uncertainty has led to many of us feeling unsafe, insecure, and afraid of how these delays will be affecting our cancer status and cancer growth. Imagining women with secondary breast cancer, of course this uncertainty has a much bigger psychological and physical damage. What do you prioritise, cancer treatment or COVID19? There were concerns over whether women with secondary breast cancer have equal rights to access ventilations when there is a shortage of them?

It appeared that many of us had been sent letters and texts at different time points, some of us having only received messages recently to lockdown for 12 weeks. Inconsistency in the manner by which these messages were communicated has caused a great deal of distress for many of us. The mixed reasoning behind these messaging patterns has been a point of ill communication. We have turned to each other for reassurance and help. We have been calling helplines for clarifications and explanations. We are anxious for ourselves and for others in our position. We are in the dark and want more clarification.

Some of us explained that it could be a case of postcode lottery with some treatment centres open as usual and others not. But this has added to our confusion.

Our members believed that much more should be done about seeing to cancer patient treatments in these uncertain times, with much worrying consequences for those who are recently diagnosed with breast cancer.

It is an emotional roller coaster. How have we coped? We’ve been raising our concerns in the group, distracting ourselves doing DIY, waiting and waiting for some imminent solution to the chaos that a majority of us have found ourselves in. Many of us have found ourselves in incredibly vulnerable situations and are scared. The uncertainty by which services may return to normal is adding to this distress. We can only hug and hold hands virtually.

While we want our voice to be heard clearly, we also want to thank all of those who are doing their best in the frontline to help us. We are grateful and we live in hope.

If you are a woman in the UK with a breast cancer diagnosis and want to join our private closed group please message us here or leave your name in the comments.

Saturday, 11 April 2020

BRiC's Collective Voice: Overthinking and how to Overcome it, April 2020

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“Let It Go” – BRiC describes Overthinking and how to Overcome it.

In our recent Sunday discussion, we shared our experiences of overthinking the past (also known as rumination) and our fears about the future (also known as worry). We talked about how breast cancer has affected our thinking and how we react in the current climate when uncertainty over COVID19 impact can breed our overthinking.

We shared how overthinking can sometimes get the better of us, that we wake up at weird times in the night and get stuck in these repetitive negative cycles of thinking, how it can interfere with our sleep. Some of us described its effect as paralysing, holding us captive, how it can lead us to self-blame and grieve over our actions; make us feel low in self-esteem and confidence.

Some of us thought we had a predisposition to ruminate about the past, and/or worry about the future, because of our childhood experiences, and learning to feel guilty and self-blame. Having breast cancer also increases our tendency to overthink. Of course these tendencies are even more alive in situations where we feel alone and are in self-isolation. Yes, we have a lot of time to think and overthink, fear the future, and detail what we could have, or should have, done better.

Research shows that overthinking the past is one of the biggest predictors of later depression, and worry closely tied with anxiety. Interestingly, rumination discriminates, it is more prevalent in women than men.

A lot of our research shows that when we get stuck in cycles of negative thinking we are using up quite a bit of our cognitive resources that would have otherwise been used more efficiently getting stuff done. So, overthinking can slow the brain down, making us inefficient and sluggish. While rumination and worry can be natural responses of the brain, when they get excessive they become interfering, and circumstances which breed uncertainty and lack of control over our immediate situations can enhance our tendency to worry and ruminate. The brain is trying to make sense of what is happening.

What tips can help manage overthinking and help us gain some control?

We discussed that if we acknowledge it, give it some space, then it is less likely to dominate us. While this may sound counter-intuitive, as we would immediately want to fight it and push it aside, it can actually make our thoughts less threatening. Some of us have developed a laid back approach, others have found meditation and fresh air helpful. Structured breathing has also helped. Finding resources to be grateful and count blessings were also mentioned as useful strategies.

Our brain has an amazing capacity to learn and to adapt because its ultimate goal is to help us survive in the most effective manner. However when our brains respond, with fear, with overthinking, with sadness and so forth, they are signalling emotions that are critical to our experiences to our being as humans. The strength we want is to be able to embrace them and listen to them, perhaps let go of their controlling forces because then they may not be so loud once they are heard, they may not be so threatening when they are embraced, and we may not need to overthink, when we have accepted.

If you are a woman in the UK affected by breast cancer and would like to join our private support group please leave your name in the comments or message us.
With love #BRiCteam

Monday, 30 March 2020

COVID-19: The World is Closed

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Utterly superb, moving and brilliant, this poem by our own Deputy Head of BRiC, Anita Traynor, captures the essence of how we feel during this pandemic. Also, published on the Breast Cancer Art Project Website, here:

Sending love and wishes for good health to all of us.

Sunday, 22 March 2020

BRiC's Collective Voice: BRiC on the Coronavirus; March 2020

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How are we dealing with the coronavirus hype and implications?

Our discussion was three days ago, and as I write this, things have moved on apace. By the time you are reading this things will have changed again. More health protection and economic measures are expected daily. We live in unprecedented uncertain times.

This virus has the potential to affect every one of us, and for many in this group who fall into the high vulnerability category, we are being catapulted headfirst into fear and anxiety mode. For some of us who are some months or years on from diagnosis, this means we are back in panic mode and this feels like being diagnosed all over again. For others, currently undergoing treatment, we feel particularly vulnerable as we are classed as high risk. And for those with secondary breast cancer, not only do we have the fear the virus poses to us, but our daily lives are restricted and we cannot live out our lives as we would wish given that we may have have limited time left.

The media bombards us daily with information but a lot of it is untrue. The pandemic is being dealt with differently in other countries and this makes us nervous. We have worries for loved ones both near to home and far away. We feel helpless, as for many of us all we can do is protect ourselves as best we can, for some this means self-isolation, and hope for the best.

Some of us have been in trauma mode since the outbreak began, others are only just beginning to realise the seriousness of it all. Many of us are taking steps to protect our mental health as well as our physical health. Our feelings veer from blind panic to calm self-assurance that we will cope.

As a community we all know fear, we are familiar with that anxiety that comes with knowing our lives are threatened. The stress flight or fight response kicks in and our brains cease to function logically. We lie awake all night fretting, we don’t look after ourselves properly, and this affects our general health and immunity. We may thirst for knowledge but find it hard to discriminate on what we find out. Stockpiling food and medicine may be something we witness, this can be an attempt at taking control. Going into hypervigilant overdrive is necessary to survive, and logically we know it won’t last forever.

This BRiC discussion gave our members the opportunity to express their fears and hopes, for themselves, their loved ones, their livelihoods, their uncertain futures. Some expressed disappointment at holidays cancelled, visits from loved ones postponed, but for most of us we’ve done this before, when we had to put life on hold for our cancer treatment. Many are concerned about the psychological effects of prolonged isolation, for those who live alone and for those who have elderly relatives who live alone. Again, many of us were pretty much isolated for months while having treatment, to protect our immune systems while having surgery, chemotherapy and radiotherapy. We had no choice then, we have no choice now.

We will be ok, we will cope, because we are resilient and we are strong. We have each other to talk to online, and this is hugely helpful.

BRiC's Collective Voice: When emotions become strangers, March 2020

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When we can’t find the words to describe how we feel…

The complexity of feelings after breast cancer can be difficult for us to articulate. If we can name something, label it, that something can seem less threatening, more controllable. If we can describe our feelings, which may include numbness, fear, anger, bewilderment, anxiety, guilt, depression, we can understand ourselves better. Some schools of thought suggest that there are only a small number of basic emotions: joy, fear, sadness, disgust and anger and that other emotions are a variant of these.

We may shut down in the face of trauma, and our emotional systems become hyper-vigilant as self-preservation. We are encouraged to be overwhelmingly positive and grateful, but we often don’t feel that way, and this means we find it difficult to make sense of how we feel. Common media language for those of us with cancer includes the battle of the warrior, our fight against the enemy disease. For many of us, this isn’t how it feels, and we dislike the idea that losing the fight implies failure for those who lose their lives to it. Many of us are also uncomfortable with the term survivor, feeling it to be a jinx term. We don’t feel brave in facing our treatment, we have no choice.

For those of us with secondary breast cancer, the plethora of emotions is complex, but for some, a sense of acceptance can lead to a feeling of calm. Fear is, of course never far away, but faced with a limited future, the priority becomes spending time doing what we want and with people we want to be with.

While feelings of numbness can dominate at times it is worrying as buried emotion can lead to physical issues. On the other hand, some of us have found that our cancer diagnosis has led to a deeper intensity of feeling love and joy, even though we may feel angry and fearful at the same time. Still others find that distancing ourselves from our feelings, as if the cancer is happening to someone else, helps.

Describing how we feel to others, particularly our loved ones, may also be difficult. How do we help them understand what it feels like, when they haven’t experienced it themselves? It can be very hurtful when others are dismissive of our feelings, and although this may not be intentional, it’s common for others to misunderstand us and for us to feel inadequate as we try to explain. Many of us have stopped talking about our cancer for this reason.

One of our members took the opportunity to name the feelings in the accompanying graphic: perhaps you would like to have a go?

‘I could name them all....feeling small & scared (little one), angry (dark at the bottom),

confused & churned up (yellow),

In turmoil (pinky swirl), enveloped in love (white fluffy) & resigned (blue).’

Another member gave us a link to uncommonly used complex emotions, which you may find interesting:

Being able to share our feelings with others who understand was seen as very helpful for all of us, and our private group, which is open to all women living in the UK with a breast cancer diagnosis, is a place where we share the light and the dark. When we don’t know how to describe how we feel we can reach out for help, use whatever words we can find, and know that others will be there with a hug and a kind understanding word. We also know that we are not alone.

Tuesday, 10 March 2020

BRiC's Collective Voice: How to look feminine during treatment, March 2020

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A recent Sunday discussion focused on how our members manage to look and feel feminine during treatment, we shared tips on what works for us and discussed whether it is important to feel feminine during treatment.

For many of our members the first hit to their femininity is hair loss through chemotherapy. A sudden and complete hair-loss affects the way we view ourselves and how we perceive that others see us. Add to that, the probability that surgery will leave us disfigured to a greater or lesser extent, then it is not surprising that we feel less feminine, less attractive and less confident.

Many members said they feel glamorous in their wigs, wearing styles that they would not have contemplated before, others hate their wigs and prefer hats, scarves and buffs, others choose the bald-and-beautiful look, embracing the liberating feeling it brings. But for every member who finds joy and confidence in their wig or hat, there are many more who feel the loss of hair affects them deeply and their confidence has taken a huge hit.

Lots of our members shared tips around using make-up, bright colours, lovely lipsticks and jewellery to boost confidence during treatment. Those who had attended a Look Good Feel Better course, or similar events, said they enjoyed the tips, such as how to draw on eyebrows. Others suggested using positive affirmations, looking in the mirror and seeing your own beauty; remembering to smile was a popular tip. One member said her method was to simply put her head down and power through, there is time enough to worry about our femininity after treatment.

Our private group has members with both primary and secondary breast cancer and for those with a secondary diagnosis the effects of ongoing treatment can mean their sense of femininity is hit even harder. They may be facing a constant battle with side effects: hair loss or thinning, weight gain, pain and bloating, were just some of those mentioned. For all our members the general tiredness adds to the struggle. Lots of us want to feel “normal” more than to feel feminine; something made difficult by the side effects of the drugs. Weight gain, premature menopause, loss of libido and loss of confidence affect almost all of us to some degree. For those of us in a relationship, having a supportive partner can be a boost to our confidence, although some members confessed to a feeling of disbelief when their partner tells them they are beautiful. Those who are single often worry about how potential partners might see us in our new, less feminine state.

Some of us who weren’t “girly girls” before cancer found the urge to enjoy what was left of their femininity, things that weren’t important before became a high priority, our hairdresser often became our new best friend. Keeping up with our routine helped many members, having a manicure, wearing make-up, buying nice clothes and getting dressed up helped to maintain that sense of self. For others it was a relief to be able to let those things slide and enjoy just being ourselves with no concern about how we looked.

We wondered if the pressure to feel feminine could be counterproductive. Side effects can be a long-term thing, is it feasible to keep on putting that pressure on ourselves to look and feel feminine when we are exhausted from the effort? One solution might be to find a way to be kind to ourselves rather than concentrating on how feminine we feel. Others thought that focusing on our femininity helps us to tolerate the treatment and its effects.

If you are a woman in the UK with a breast cancer diagnosis and would like to join our private group, please add your name into the comments or send us a private message and we will get in touch with you.

Sunday, 8 March 2020

International Women's Day, 2020, #eachforequal

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Today is International Women's Day.

This year's slogan is #eachforequal, and we asked you what this means to you.

Here are your responses:

-Women demonstrating strength, resilience, caring and thoughtfulness when facing trauma
-Mutual respect, support and kindness. Together we are stronger.
-Diversity is what makes us equally strong
-Treat our choices equally when it comes to treatment
-Mutual respect and support
-Not discriminating against primary and secondary breast cancer
-Equal rights at work and for employment
-Equal rights for insurance
-Equality in care after treatment
-Equality in treatment plans
-Equality in treatment and access to treatment
-Equal support for women with secondary breast cancer
-Equal support for younger women

Our private group supports women living in the UK who have a breast cancer diagnosis. If you would like to join please leave your name in the comments or send us a private message.

Friday, 6 March 2020

World Lymphedema Day, 2020

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Today is World Lymphedema Day, and BRiC is raising awareness of this debilitating chronic disease in breast cancer.

Lymphedema which means excessive heavy swelling of body tissue, affects around 20% of women with breast cancer and is known to be a side effect of treatment. Excessive swelling in the arms means that the lymphatic drainage system isn’t working properly. It is a chronic disease that can be debilitating.

Our members today discussed how Lymphedema can occur any time after treatment, up to many years after surgery in fact. It can be depressing when normal sleeves won’t fit. Infection of course is a horrid side effect, making us ill as a result.

We have been able to manage Lymphedema by massage and cream. Some of our members also reported that weight and resistance training have helped loads. Specialist sleeves are also available. Thank you to all the nurses who have helped us deal with Lymphedema.

Sunday, 1 March 2020

BRiC's Collective Voice: "Let's Talk about Sex" or lack of it; 23rd Feb., 2020

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‘Let’s talk about Sex’, or lack of it. How breast cancer impacts our sex lives.
“I don’t know where my libido is?” “I used to be sexual and have a full on firey sex life before breast cancer, but that has all gone now” “Sex? It’s all in the past.”

There are two major ways by which breast cancer affects our sexual health: it can demolish our libido, of course due to hormonal deprivation, and it can cause pain, atrophy, and soreness, probably also due to estrogen deprivation, so the two are not mutually exclusive.

“It is so painful that I try and put it off” “I cry after having sex” “ The creams and lubricants are OK but don’t make me feel sexy” “It is impossible at times.”
Then there is the issue of self-esteem and self-confidence, that is shattered through physical changes. Fatigue does not help either.

“I don’t look sexy”, and “I don’t feel sexy”. “surgery has left scars” “ I don’t feel confident about my body”. “I am exhausted”.

Failing to feel like what we used to be and what breast cancer has left of us in that department can impact heavily on our sexual health and our relationship with our partners:

“We have come to terms with it, that sex is something of the past.” “I think that he will probably leave because of this” “He is understanding but I do worry” “ I try and explain but it was so long ago that he isn’t convinced its psychological”.
For those of us in search for a new partner it also takes its toll:

“I’m not sure I’m going to find anyone who would put up with this”, “It is difficult to explain.”

The list continues…..

Sexual health does define a major part of our womanhood. The effects are multidimensional and can impact our self-esteem. For some of us the thought of having sex is terrifying, the pain that it leaves us with prevents us from initiating sex and as such we can get into a trapped cycle of avoidance.

The topic itself is not spoken about, it is not discussed with our oncologists as a possible side effect, in fact, the majority of us feel the same: that we cannot talk about it. The lingering effects are explained through Tamoxifen and the AIs that hinder sexual health considerably.

Women’s sexual health post breast cancer should be given the credit it deserves. In research you can see it discussed in passing, as part of a bigger package of problems we face, but it deserves its own stand as it defines a big part of who we are. There is a difference between choosing not to have sex and not being capable of having sex, because with the latter we have little to no control over it.

If you are a woman in the UK with breast cancer and wish to join our private psychoeducational group please message us here.

Sunday, 16 February 2020

BRiC's Collective Voice: To repress or not to repress, Feb., 1, 2020

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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.

We’ve often heard of the ‘I’m fine’, when we are not, ‘I’ve just got to get on with it’, ‘it’s a chapter I’ve put aside’, ‘its on the shelf now in a box’ ‘ignore it’, ‘I don’t want to think about it’.

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.

If you are a woman affected by breast cancer and are living in the UK and would like to join our private group message us here and we will get back to you.

Tuesday, 28 January 2020

BRiC's Collective Voice: Friendships in breast cancer

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BRiC is: "Immeasurable". "A connection like no others understand". "Educational, supportive, and downright hilarious."

This week our BRiC members discussed the value of friends and friendship in coping post diagnosis and beyond into survivorship.

Psychological care is lacking post breast cancer diagnosis. While medicine is doing an increasingly good job in treating physical symptoms of breast cancer, the psychological challenges post breast cancer increase once active treatment for primary BC is over. In secondary breast cancer such challenges weigh even heavier.

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Research shows that the mind and body work together, so it is vital that psychological well-being is prioritised to promote better quality of life as well as keep us stronger physically.

In our discussion, almost everyone of us voiced the value of online groups such as BRiC, the 'virtual' friends we've made, stronger even when we've met in person, because we have been able to connect even more. We've cried, laughed, and held hands. A recent meetup of ours in London was spoken of as feeling like "A warm blanket" "An extended family" "An assurance that we are not alone". As many of our members highlighted BRiC has been the safest group they've ever joined.

Moving Forward courses have also provided a platform for small groups of us to stay in touch and meet up, understand each other, when it has been hard to open up to family and cancer free friends. 'Bossom Pals', 'Breast Buddies' WhatsApp groups and other names we've used to treasure our friendship. The friends we've made through Maggies, Cancer Support groups, as well as Yoga for Cancer classes have helped us enormously too.

Sadly, many of us have lost our previous friends post breast cancer, and we've had friends who've abandoned us. As such, the value of friends we make post breast cancer diagnosis becomes even more pertinent.

We can be nervous when we first meet with our new online friends in person, but we soon feel connected and understood, feeling free to talk without being judged, and to know that our friends 'get it'.

So, here is a little 'thank you' to all of us for being there, online or in person.

If you are a woman with breast cancer and are living in the UK and would like to join our group please message us here and we will get back to you.