Weekly Discussion Summary ~ Our BRiC Private Group Values and Expectations

"This group stands out because it focuses on being with cancer and how we do that".

In our weekly discussion we thought about our values as a group and our expectations of one another.

Naz founded The BRiC Centre in October 2015 and since then our private group has grown rapidly, with now over 1,100 members. Supported by an amazing team - Anita, Caroline, Jan, Jenny, Tamsin and Vicky - we strive for our group to be a rich, nurturing, supportive, open-minded place, blended with love. Above all else, we value confidentiality and safety, we value warmth and encouragement and we are respectful of each other's needs. We listen to one another without judgement and offer our support unconditionally.

We are women of all ages, from all walks of life and differing backgrounds, with many and varied life experiences. We are women with primary and secondary breast cancer. We do not see primary and secondary breast cancer as separate entities, but instead, as being on a continuum, where a better understanding of our common and particular experiences and needs can foster greater mutual support and resilience.

Some of us are recently diagnosed, others are going through active treatment or are on maintenance treatment; some of us are living with long-term side-effects, or, do not see ourselves as falling easily into neat categories due to our very particular experiences.

We celebrate our successes and the many and varied ways we practice our resilience - our poetry, our art, our photography, our writing, our singing, our fundraising, our running and other physical achievements, our campaigning and lobbying. We cheer on those engaged in new endeavours as well as those reconnecting with activities they enjoyed before being plunged into the uncertainty that accompanies a cancer diagnosis.

We hold hands through the bad times and through our shared hardships we form strong bonds; we share all sorts of emotions - our worries, our fears and sometimes our tears. We light candles for those we have lost, carrying love in our hearts which shine with the light that we all hold for each other.

Our group is a place to think, to be open, not only a home for our hearts but also for our minds, a place for ideas and debate. Not just a place to cry, but a place to laugh and to find and share humour.

It is a place with a strong sense of togetherness, as we learn to accept and try to embrace our changed selves. It is a place for us to learn from one another what resilience actually means. We embrace our honesty and value our differences. We are eager to learn, to develop and take steady steps towards resilience and flexibility.

We are a support group, but we have become much more than that. We have a sense of direction and a passion. We are a group with resilience as our aim and carry hope in our hearts.

If you are a woman with a breast cancer diagnosis living in the UK and you would like to join our private members group, please message us via our facebook page 

https://www.facebook.com/resilienceinbreastcancer/

Weekly Discussion Summary ~ Loss of Peers and Friends to Breast Cancer

In our weekly discussion, we shared our feelings about losing peers and our friends as a result of breast cancer.

Hearing about the death of another woman with breast cancer can tear apart the hearts of those of us who have been diagnosed with primary and secondary breast cancer. We find ourselves mourning women in the public eye, women we have never met, like Rebecca Ellison, Connie Johnson and Mao Kobayashi – to name but a few.

Why, we asked ourselves, do we feel such intense pain for women who we have never met?

It is because they are untimely. It is because we have seen too many young, vibrant women robbed of their lives. It is because some, but not all, are mothers, leaving behind children, sometimes very young children. It is because we know how much the loss of these unique, extraordinary women will hurt their loved ones and their families.

Grief for friends with breast cancer can feel more validated, but our response to the loss of women we have known through online groups and forums is often no less intense and the strength of our reaction can take us by surprise. Our discussion highlighted that losing someone who means something to us and shares our own vulnerabilities, can feel uniquely devastating. We are profoundly sorry for their loss but, importantly, it makes us fearful, reminding us of the vulnerability that we face, reminding us of what may be awaiting us and our own mortality, reminding us of our powerlessness and lack of control. We feel guilty that we are one of the lucky ones, that we have survived. We feel grateful and profoundly thankful. We also wonder why it is we are still here. Time seems to stop. We cannot find the words to describe our complicated feelings and so we remain silent. Our pain is invisible and unseen.

For some of us, anger is our first reaction, anger at a cruel disease which seems to senselessly rob us of a life long before our expected time. Others described intense sadness. Some are reminded of other losses they have experienced and the pain they felt and still feel, while others described sensing those losses that are yet to come. Women with secondary breast cancer shared just how hard it can be for them because of the looming, anticipatory fear that accompanies each loss, causing them intense anguish as they try to banish the dreadful thought ‘it could be me next.’

What can we do in these circumstances?

As humans, we naturally try to avoid suffering but Naz explained that research shows that acknowledging loss and spending time on mourning and grieving can, in fact, help us to adapt more quickly. In comparison, blocking out the pain, and attempting to push it out of our minds can cause us even more suffering. There is no prescription for how long we need to grieve or how intense the sadness, usually we find our own path and, deep inside us, we know.

Our attitudes to grief and loss are deeply embedded in our culture. As a society we are ill-equipped to deal with death, believing that immortality lies beyond the horizon of new medical innovation and technology, or if that can’t save us, then a positive attitude can. We heard from women from other cultures how helpful it can be to be able to express grief openly and dramatically. Western culture, however, does not give us a strong role model for death and grief, it's a hidden-away-thing, rituals are few and the emphasis is on ‘being positive’ and ‘being strong.’ Yet, when we focus our energy on being strong, we can forget to give ourselves permission to cry.

It can be comforting to know we have held the person who has died in our love and in our hearts. Memories become like gold, allowing us to celebrate the lives of our beloved and we know that we can carry this love forwards with us in our hearts. Gestures help, such as lighting candles and sharing happy memories because they allow us to share our grief as a group, reminding us that we are not alone. Most importantly, we can listen. Really listen, and by listening, we can open our hearts to one another. If we can be brave and we can allow ourselves to feel our pain, we can become like the sea, 'the Living Infinite,' nothing but "love and emotion".

If you are a woman living in the UK with a diagnosis of breast cancer and you would like to join our private group, please contact is by facebook message https://www.facebook.com/resilienceinbreastcancer/

#ResilienceDiscussion

Weekly Discussion Summary ~ Coping with Fear

"It is quite a balancing act between transforming fear into motivation and also accepting fear".

Coping with fear - of recurrence, secondary breast cancer and for those of us with secondary breast cancer, of progression of disease - was the topic for this week's discussion.

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 adrenelin 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.

Our discussion, which included women with primary and secondary breast cancer, highlighted that fear is an ever present emotion experienced by most, but not all of us. For some, the fear of spread or progression of disease is the colour that dominates our emotional landscape, for others its hue is made up of the loss of control, the certainties which were once took for granted. Some are fearful of death, of pain, whilst others fear being the cause of pain to those most precious and beloved to them, or having to say goodbye.

For some of us, fear hits only after we've finished our active treatment, perhaps because we've hit the pause button on our emotions. Our path ahead narrows while we place one step in front of another, we focus on the present, the here-and-now, on what is most important and gives us most peace and joy.

Some of us described feeling almost overwhelmed by our fears, whereas for others, gaining a mastery over their feelings was a means to becoming a protector to their fearful selves. Denial and suppression of this strong primal emotion can, we heard, also be vital to emotional and psychological survival.

For many, the nights are when we feel most alone, when we can no longer distract ourselves as we can in the day. For others, fear is triggered by a scan, or a new pain, reminding us of our vulnerabilities. Perhaps hardest of all are those times when we are unwell, when we cannot practice those things that support our resilience, like yoga, or exercise, or doing the things that matter to us most.

Naz explained that fear is a normal reaction to an uncontrollable trigger with a highly uncertain outcome. However, overwhelming fear uses up a lot of energy and cognitive resources that are needed to start thinking pro-actively, to adapt and to be fruitful.

If we can, instead of being overwhelmed by our fear we can use it to take smaller steps in the darkness, to trust our intuition. It can help if we can strive for an acceptance of our lack of (or having little) control over the situation; if we can see fear as an opportunity, not to influence the outcome, but to help us stride ahead in spite of the uncertain road ahead; if we can use it to help us to focus on those things that we HAVE influence on, how we can make ourselves stronger and happier in spite of the 'what ifs'.

Naz explained that this is NOT an easy task but we can learn, re-thinking, re-prioritising and rewarding ourselves for the little things we can and do achieve. And amongst all, showing ourselves self-compassion when we are at our most fearful.

If you are a woman living in the UK with a diagnosis of breast cancer and you would like to join our private group, please contact is by facebook message https://www.facebook.com/resilienceinbreastcancer/

#ResilienceDiscussion

Weekly Discussion Summary ~ Be Positive!

'A smile and a positive attitude may be helpful to healing, but not when it's forced and not when it masks our genuine distress.'

'Be positive!' It’s a phrase we often hear when we've been diagnosed with cancer. Sometimes, it's something we tell ourselves, sometimes it's the advice of well meaning friends. But what does it mean to stay positive in times of despair? How can we be ok with the times when we don't feel positive? These were some of the dilemmas we struggled with in this week's discussion.

Naz explained that when we block out unpleasantness we are at risk of damaging our well-being, whilst if we let it all in and dwell on negativity, we can feel we are becoming dragged down into depression. A balance is what we seek, and cognitive awareness and practices can help.

Apart from the primitive survival-seeking reactive brain, we do have some choice in how we deal with our emotions and our resilience gives us flexibility and helps us to achieve our happiness goals. Embracing sadness rather than pushing it away is key, and allowing ourselves to experience a full range of emotions is healthier than putting on a brave face and pretending we're fine when we are not. A smile and a positive attitude may be helpful to healing, but not when it's forced and not when it masks our genuine distress.

Our members, who have both secondary and primary breast cancer diagnoses, shared activities that help them feel better when distressed. Many and varied responses were given - long walks and baths, family, friends, hobbies, exercise, nature, pets, meditation, breathing exercises. But what emerged from this conversation was a deeper discussion about being authentic, acknowledging feelings and wanting to be real and honest about feeling less than chipper all the time. We aren't self-indulgent about our negative feelings and not one of us wrote about wallowing in self-pity. Some women look for a semblance of control (as having cancer takes this away from us) while others relax into whatever they are feeling and let it go. Some of us keep busy, others seek out peace and quiet.

A positive attitude is often expected of us by others, and of course there are times when we have to temporarily hide away our real feelings and get on with whatever we need to do. What we really struggle with is when it is implied that being positive will cure our cancer. It will not! This is especially true for women with secondary breast cancer, otherwise known as metastatic cancer, for whom treatment continues as a lifelong burden and for whom stability becomes the goal rather than cure. It is very hurtful and undermining to imply that we may have encouraged our illness to spread by not being positive enough.

Being outwardly positive can be a protective mechanism for our fear and vulnerability, but allowing the fear and sadness in also allows us to appreciate the positive in life.

We all cope in different ways according to our personalities, our preferences, our circumstances. What we must admire in all of the women who contributed is that they are working on discovering their negativity triggers and how best to deal with them. Even when bombarded with bad news and significant troubles, they go on. Support from others who understand is key.

If you are a woman living in the UK with a diagnosis of breast cancer and you would like to join our private group, please contact is by facebook message https://www.facebook.com/resilienceinbreastcancer/

#ResilienceDiscussion

Image credit: Buddha Doodles whose images are certain to lift the spirits!

Weekly Discussion Summary ~ Hopes and Dreams

'My dream. My passion. My hope. They are you. We stand together.'

Naz introduced this week's discussion about 'hopes and dreams, goals and ambitions' by talking about her own ambition: The BRIC Centre, our private group, making a difference with her research, spreading the word all over the world. She speaks for all of us who have had a breast cancer diagnosis and her goal to bring women with primary and secondary breast cancer together.

During active treatment (surgery, chemotherapy, radiotherapy) many of us felt our goals may be frozen as we lurch from one hospital appointment to another. Our focus is on getting through it one day at a time. We shared how our plans go on hold, we pause, develop new goals, redefined goals. We must change and practice flexibility, prioritising and self-care. However, we realised that women's experiences do not fall into neat categories - 'primary'; 'post-treatment'; 'secondary'; 'recurrence' but are much more complex and varied.

A diagnosis of breast cancer can be shattering and we find we are both a different person and yet still in essence the same. Some of us emerge from active treatment treatment with the expectation that our dreams and hopes can be addressed, only to find that we need to reconcile with our experiences and come to terms with them. Women with secondary breast cancer spoke about how hard it felt to know that treatment and all that goes with it will never end for them but said their hopes and dreams are still there. Whatever our different experiences as women with a diagnosis of breast cancer, there was a sense that we had in common a greater awareness of what it means to be alive, we can become much closer to our values, we experience a clarity and a determination to tune into what makes us happy rather than worrying about what others expect of us.

Some of us slow down, choosing a quieter life, perhaps changing jobs or moving house or give up work (not always through choice but because their health prevents them from working). Many change the focus of their goals from themselves to others - we want to see children or grandchildren grow up and settle and achieve their ambitions. Others speed up and feel an energy to make the most of every moment, perhaps visiting far away places or undertaking physical challenges, taking up new hobbies, becoming creative, learning new things.

We heard about women giving up regular jobs to earn a living creating things, to become a counsellor, to take up alternative therapies, to retire early. Others remain as career focused as before, and, like Naz experience a renewed determination to achieve their goals. Others choose to balance their ambitions with studying or part-time work. Some return to the same job but view it differently, perhaps choosing not to let things worry them and finding they can relax more easily when not at work. If self-employed we might decide to keep our business small rather than push for expansion. There was a general desire to minimise stress and to practise self-compassion.

Some of us are aiming for a particular anniversary - a special birthday, a child coming of age, a wedding anniversary. Other women find themselves not wanting to set long term goals, choosing instead to live more in the present, although some admitted to finding this challenging. What really matters is time, time to love and be loved and of course we would all like to grow old.

If you are a woman living in the UK with a diagnosis of breast cancer and you would like to join our private group, please contact is by facebook message https://www.facebook.com/resilienceinbreastcancer/

#ResilienceDiscussion

Weekly Discussion Summary ~ Impact of Breast Cancer on Intimacy/Sexuality

The impact of breast cancer and its treatments on intimacy and sexuality was the subject of our weekly discussion.

Sex is - generally-speaking - a private experience which takes place behind closed doors and not a subject which we discuss openly. This means that the difficulties that many of us experience with physical intimacy as a result of treatment for breast cancer remains hidden.

Breast cancer has an enormous impact on the way we view our bodies and our womanhood, and being intimate and sexual is a big part of that. Surgery, weight gain and the fear of recurrence all exact a toll on our libido and the way we view physical - and emotional - intimacy. Where once there was passion and pleasure now there is pain and numbness, and for many a profound sadness and sense of loss.

Women with oestrogen-sensitive breast cancer are given 5-10 year's hormonal treatment in the form of tablets and/or injections to reduce the risk of recurrence. Some of us have had our ovaries removed, either as an alternative to hormonal treatment, or because we are at risk of developing ovarian cancer. Whatever our individual situation, our discussion highlighted that being thrown into an instant surgical or chemically-induced, prolonged and severe menopause is much more intense than dealing with a natural menopause and can lead to the follow side-effects which can be particularly challenging - loss of libido, vaginal dryness, atrophy and bladder infections. Unlike women going through the menopause who experience these symptoms, HRT is not an option for women with hormonally sensitive breast cancer.

Our discussion, which included women with primary and secondary breast cancer, revealed that many of us had not sought support for our concerns, perhaps out of embarrassment, or a sense that we should be grateful for being alive and our sexual identities were a small price to pay for this; or perhaps we simply did not know where to go to get help.

What can we do?

Our GP can be a useful starting-point, although many of us shared that they do not always have the necessary knowledge. Some of us had had positive experiences at Menopause Clinics where we had been given practical advice about products which could help alleviate symptoms.

Breast Cancer Care have produced a good leaflet about sex and breast cancer treatment https://www.breastcancercare.org.uk/…/sex-breast-cancer-tre…

. This blog by the breast surgeon Liz O’Riordan, herself diagnosed with breast cancer, (http://liz.oriordan.co.uk/BreastCa…/lets-talk-about-sex.html

) also offers useful advice. We love her suggestion for having a “box of tricks” including most importantly a good lubricant. Some are available on prescription so we don’t need to pay for them. YES is a highly recommended water-based product which can be used as an internal moisturiser to help relieve dryness and irritation and works better than silicone-based lubricants. Another popular product is SYLK. We also know that coconut oil or Vitamin E oil can be helpful. Her advice is that a small vibrator can really help with feeling dry and tight and it can be worth considering dilators which can help make sex less painful.

In her blog, Liz O’Riordan explains that oncology appears to be reviewing its position about the use of topical vaginal oestrogen for breast cancer patients - one school of thought was that if women used them, the tiny amount of oestrogen that they would absorb might increase the risk of the cancer coming back. However, small trials have shown no obvious increase risk in recurrence for women taking Tamoxifen. This is important because it is a very effective treatment and some of our members shared that this had transformed their quality of life. It must be a decision made by each woman and her doctors based on her individual situation.

Sex and sexuality are intensely private subjects and we have made the decision not to summarise our discussion to focus on the things we can do to address the challenges we face. It isn’t our fault that sex can feel difficult and is not always spontaneous, but we have enough trust in our safe and confidential group to share some of our experiences, even if it feels hard.

If you are a woman living in the UK with a diagnosis of breast cancer and you would like to join our private group, please contact us by facebook message https://www.facebook.com/resilienceinbreastcancer/

#ResilienceDiscussion

Weekly Discussion Summary ~ Breast Cancer Awareness Month...more than a pink ribbon?

More than a pink ribbon?

In this week’s discussion, we explored whether Breast Cancer Awareness Month effectively communicated our physical and psychological struggles and the feelings it evoked in us as women who had been diagnosed with primary and secondary breast cancer.

For 25 years, the pink ribbon has been the symbol for anyone affected by breast cancer and there is no doubt it has been a force for change, helping bringing breast cancer into public consciousness and helping women to become more breast aware. But as a group, we were doubtful that it conveyed the complexities associated with our experience of breast cancer, its effects on our womanhood, and the after effects of diagnosis and treatment on our physical and psychological well-being.

It was clear that Breast Cancer Awareness month was particularly tough for those who were going through treatment and whose diagnosis felt raw as it means there is nowhere to hide. However, not only those going through treatment found it difficult to embrace the frivolity which we often see in the way the media represents breast cancer, and, in particular, some of the celebrity endorsements which capitalise on the beauty and sex-appeal of actresses and TV presenters in a way that some of us - but by no means all - found offensive.

We expressed our gratitude for the well-intentioned efforts of our family, friends and colleagues to raise money and awareness and who we know want to show their solidarity for us.

Some asked how raising awareness could possibly be a bad thing? Others suggested that it was a starting point for a conversation. We wondered how men with breast cancer might feel? The colour pink carries a lot of charm, we agreed, with an emphasis on fun and frivolity, with the chance to wear tutus and wigs; from bras to breast checking, from fund-raising to cake-baking. Many confessed that they had begun to detest the association with fun, fluffiness and frivolity when they had experienced or witnessed pain, suffering and the loss of loved ones. Some of us shared our distress about some of the ways charities raise awareness or engage the public but we found ourselves feeling churlish for raising objections; the so-called ‘pink products’ where only a fraction of money goes to charities was also a concern.

Whatever our very divergent views, we asked whether we had got any better understanding that:
breast cancer does not discriminate against age.
that you don't need a family history to get breast cancer.
that you can get it whilst pregnant.
that about 30% of those diagnosed with primary breast cancer go on to develop secondary breast cancer.
that clinical levels of anxiety and depression loom high in women with a breast cancer diagnosis, with fear of recurrence constituting a major threat to their daily lives for years post diagnosis.
that there are serious and long-term physical consequences of treatment such as lymphoedema, chronic fatigue, cognitive decline and menopausal symptoms.
the fact that breast cancer is a life threatening disease that can affect women at any age and is a highly complex and multi-factorial cancer with a heterogenous make-up can be lost.

We hear a lot about how early diagnosis can help, though our experience is that it is not at all that simple and there is emerging evidence that early diagnosis does not, on its own, always prevent metastasis or recurrence.

It is particularly disheartening considering the amount of attention that breast cancer does receive that it is still not widely known that no ONE factor CAUSES breast cancer. We encounter many people who are under the belief that diet or stress is the CAUSE of breast cancer. We have to explain what is meant by secondary breast cancer.

Prior to our diagnosis, many of us confessed that we hadn’t taken much notice of Pinktober. We thought it would never happen to us and surely the probability was minutely low. Yes, we can if we wish enjoy the charm, the fun, the dancing and the pink ribbons. We can be grateful for the funds that are raised. But Breast Cancer Awareness Month, and the efforts of charities to raise (much needed) funds can undermine our efforts to be resilient and we cannot always claim that we are any wiser.

If you are a woman with a diagnosis of breast cancer, you live in the UK and you would like to join our private group, please message us via https://www.facebook.com/resilienceinbreastcancer/