Breast Cancer Does Not Define Us

 

We are home-birds, adventurers and adrenalin-junkies; we are cloud-spotters and star-gazers; we love nature - the ‘peace of wild things’, still waters and forests, some of us are drawn to the sea, others to the mountains. Some of us are larks, up to watch the sun rise, while others are night-owls and love the moon.

    We hate unfairness. We believe in values, of truth, honesty and kindness. We are passionate, loyal and stubborn; fierce and fiery, calm and tranquil. We laugh.

    Some of us are workaholics, entrepreneurs, business women, others, for many reasons, have taken a step-back from their careers, or are retired. We are volunteers and public speakers, writers, poets, artists, photographers. Some of us are bosses. We work in all fields. We study, we teach, we mentor and we fundraise. We care. We would move mountains to make the people we love happy and see their smiles.

    Some of us like coffee, others enjoy drinking earl grey in a bone china cup or freshly made masala tea. We love prosecco, red wine, beer, champagne, and - all but a few of us - like chocolate, ice-cream, stout, clean sheets, the sound of birds singing, our children or grandchildren laughing, the thrill of visiting new countries, the anticipation of the curtain call or our favourite band coming on to take centre stage.

    Our interests include amateur dramatics, baking, ballet, crochet, cycling, dancing, drama, DIY, dragon-boating, glass-making, garden gnomes, jewellery-making, knitting, music and musicals, painting, Pilates, playing musical instruments, reading, sailing, singing, scuba-diving, sky-diving, skiing, Reiki, Tai-chi, tennis, theatre, trekking, walking, yoga.

    We have crushes on Keanu Reeves, Tom Hardy, George Clooney and Idris Elba.

    We are animal-lovers and treasure our beloved pets, our dogs, cats, rabbits, horses and sheep who give us so much joy.

    We laugh at Car Share and the Task Master. We hide behind our cushions while watching Scandinavian dramas and get swept away by the lives of the characters in Home and Away and Poldark.

    We enjoy Harry Potter and Glastonbury and Wimbledon Tennis. We run marathons, climb Ben Nevis and Snowdon and participate in endurance races.

    We are travellers with pilgrim souls. We have visited the Grand Canyon and the Great Wall of China, Antarctica, Australia, America, Bolivia, Bulgaria, Costa Rica, Guatemala, Iceland, India, Morocco, Mexico, Tibet and Thailand.

    We are daughters, sisters, wives, partners, aunties, carers. Many, but not all of us, are mothers, or hope to be mothers, and some of us are single-parents. We are grandmothers. We are friends and colleagues. We are all women everywhere.

Ageing: A Gift but Not for Many

 

"Do not try to live forever, you will not succeed.” (George Bernard Shaw)

How does a diagnosis of breast cancer impact on our views about the privileges and challenges of ageing?
   

      Life is a privilege, and one that is often not fully appreciated until it is threatened. When we are diagnosed with a life-threatening disease such as breast cancer, that privilege is brought into sharp focus. 


    We are all women with a diagnosis of primary or secondary breast cancer. We are women of all ages and we have all faced our mortality as part of our illness, and our fears that our lives may be shortened by the disease are real. For women with secondary breast cancer, their perspective is shaped by the knowledge that their disease isn't curable, although treatments often halt its progress for many years. 


    If life is defined by the spirit, a life well lived, then does the length of that life matter? Is living to 'a ripe old age' a valid goal, or a vain one? If we know someone who is dying, don't we want them to stay, to live, for as long as possible? Is it a trait of the human spirit, to want to live a long long life? If so, then why do some people choose to end their lives, by suicide or Dignitas? 


    Our views on ageing were rich and varied, with some of us wanting to live as long and as well as possible, while others value quality over quantity. A life of no regrets, with no time wasted. Some of us throw ourselves into a busy life, with bucket lists and living each day as if it were our last. Others find this approach exhausting and strive for the peaceful and the ordinary. 


    We talked about our elderly relatives, of illnesses in old age which may change people, such as dementia. Here, our views and feeling are shaped by our experiences. The suffering we see, the loss of control, and the challenges of living with reducing abilities and having the resources to adjust have parallels with our experience of cancer. 


    Some are preoccupied by their worry they are a burden to others, the human spirit does appear to cling on to life, through dementia, immobility, pain. If we have cared for elderly relatives who have been unwell (and for those in the caring professions who work with the elderly), we are confronted with these challenges and their impact on our own values and our feelings about cancer come rising to the fore - we may decide that growing old and becoming dependent on others isn't something we want. When quality of life is poor, how do we find pleasures? Does there come a time when decline leads to a desire for life to be over? We may witness frustration, and fear being old and infirm. However we can try to cast this aside and focus on living every day as best we can and being happy. 


    We feel that breast cancer ages us, in that our physical and cognitive capability may be reduced following treatment, at any age. Harsh treatment regimes leave us depleted and adjustment is difficult. For those of us with secondary breast cancer our treatments are ongoing and can be debilitating. We may feel old before our time, which may limit our options, restrict our choices. 


    Some of us feel that our diagnosis gave us a second chance, we've reassessed our priorities and our values. Compassion and kindness lead to contentment for many. For others, death feels closer because of our diagnosis, we no longer feel the invincibility of healthy youth, death is no longer abstract. Some of us make wills, plan funerals, declutter and tidy up. We want to be ready. Many of us celebrate life with rituals to mark the passing years, perhaps with lavish family gatherings and big birthday parties, while others let birthdays slip by quietly. 


    We talked about our faith and the different ways of coming to accept our suffering, our mortality, our reason to be on the earth and how living in the moment might help us. 


    We want to get our vitality back and be the best we can be, without counting numbers. We can't control what happens to us, only how we respond. 


    Whatever our views, appreciating our lives was a key theme, whatever age, with many citing simple joys and everyday pleasures as being of huge importance, alongside gratitude. 

Our Strengths, Our Weaknesses

 

“Vulnerability and strength are two sides of the same coin: you cannot have one without the other.” (Nazanin Derakhshan, Founder of BRiC)

Many of us have found it easier to focus on our weaknesses, perhaps indicating a general negative bias. We have all been diagnosed with breast cancer, some of us primary breast cancer, some of us with recurrences, and some of us secondary breast cancer. Our discussion confirmed that our diagnosis changes us and we talked about lessons learned, weaknesses turned into strengths and vulnerabilities transformed into resilience. We have faced our mortality, undergone harsh treatments, our bodies and minds irrevocably changed. Yes, we have suffered, but we have also grown, found strength in sharing, overcoming, enduring. 


    Many of us see ourselves as caring and kind, tenacious and determined.  We are good problem solvers and fiercely loyal to family and friends. We are generous, independent, smart, passionate and creative. We are conscientious and we never give up. 


    We may come to appreciate the small, simple everyday things in life more, we may find we can let go of insignificant worries more easily. 


    We see our weaknesses as often stemming from our sadness and our experience of loss. Inevitably in our group there is loss, as the reality of breast cancer is that women are robbed of their lives too soon. This can lead to feelings of guilt - why her, not me? and a sensitiveness that leads to holding on to deep fears and sadness rather than expressing our feelings. This is where a safe, confidential space to share (provided by our closed private group) can be so important. 


    Many of us find it hard to put ourselves first, even though our need for self-care may be huge. Treatments and ongoing medication may leave us fatigued and with numerous side-effects that are difficult to explain to others, and so many of us battle on every day feeling low and tired. Many of us have demanding jobs, family responsibilities, caring roles, and so on, and today's society demands a lot from all of us.


    It's hard to slow down and find time to look after ourselves in a world that values busyness. Self-compassion is a value we advocate in our group, but it seems that many of us find it extremely hard to practice it. By contrast, some of us are worried that our self-care is close to laziness and we are good at avoiding chores in the name of needing to rest! 


    A few of us have given ourselves permission to be happy. So many of us see ourselves as responsible for everyone else's happiness, which of course we cannot control, and so we never rest because we cannot control how others feel. If we are to address this tendency, we must put ourselves first and attend to our needs before others - the well-known idea that we must put on our own oxygen mask on the failing plane before fitting others' masks. Sometimes we need all of our energy for ourselves, we may need to ask for help, we may need to listen to our bodies and treat ourselves with the kindness we show others. 

    Resilience can come from acknowledging that it isn't what happens to us that matters, but how we react and what we can do about it. If we are wise and insightful, we can exploit our weaknesses and move our vulnerability towards strength via blending, melting and moulding. It is not easy and for many, our breast cancer diagnosis brings fatigue and low mood, perhaps depression. However if we can sit up and take notice of the moment, acknowledging the beauty and joy in the everyday and succumb to a craving for life, this can carry us forward. We may seek a bucket list of new and exciting experiences, we may look for quiet moments of joy. As Naz reminds us, vulnerability and strength are two sides of the same coin: you cannot have one without the other.

Searching for the Hero Inside

 

"Who/What is the hero inside yourself?" In BRiC we have talked about what we are proud of, what makes us strong, what it is that keeps us going through all we have to endure?

    Sometimes it’s difficult to see oneself as any kind of hero, more often we are focused on day to day tasks, the mundane roles we play, or the struggles and pain we deal with. Often we don’t see our own strength or our inner hero until we have time to stop and reflect on events, be those in the recent or distant past.

    

    It was interesting that many of our members opened their contribution to this discussion by describing how they struggled to find their hero within. As the discussion progressed we found our strengths and saw the beauty inside ourselves. Strength was a recurring theme, many of us talked about an inner strength, often brought to the fore by our breast cancer diagnosis; being faced with our mortality and the trauma of cancer awakened what one member called her “steely core”.

    

     We found courage and determination, stoicism and self-awareness, we realised that we are often stronger than we knew. A few members related that they were now braver than before, they were willing to try new things and were less afraid of failing. “With cancer suddenly thrown into my path, I realised I had no reason NOT to try, so I did.”

    Lots of us talked about how our parents were a huge part of building that strength, some by their support and example, others because they weren’t the parents we needed, but still taught us valuable lessons. Dads especially seemed to instil in us self-belief and resilience. Memories of childhood experiences both good and bad were frequently mentioned and it was generally agreed that being surrounded by love allowed us to grow stronger.

    

    We talked about nurturing our inner hero, practising self-care and not worrying if we have bad days; safe in the knowledge that we are tough enough to get through it and things will get better. Some of us were proud of being able to acknowledge when we need help, of finding the courage to ask for help and accepting it when offered. Asking for help actually takes a lot of strength and courage. It’s as important to understand our own vulnerability as it is to be proud of our strength. We are proud of keeping going when things are difficult, of getting up when we are knocked down and of helping others despite our own problems. One member said her inner hero came from her innate kindness.

    

    It was acknowledged that we all have wobbly days, that we can’t be strong all the time and that we are a work in progress. For many of us our inner hero comes from the ability to step back, to say no and to choose our path. We know that we are complex beings, our emotions are part of who we are and we both absorb and reflect our life experiences; for our group breast cancer is a shared experience which has affected us all, but we are each individual and our experiences are as individual as we are. Our experience has helped some of us to focus on ourselves, to never lose hope, to see the bright side, to be true to ourselves, to value ourselves and to take time for that hero within. It’s also helped us to face those bad days, to overcome the negativity, but to accept that we won’t always be happy and smiling; that it’s fine to be sad sometimes, to be angry, to cry, to scream and shout if we need to.

    

    Our inner hero was described as a many faceted diamond, the faces all different colours, some dark, some bright, reflecting our emotions, but whether dark or bright the diamond still sparkles. This is our inner hero, the woman who keeps going through it all, who has good and bad days, but never quite loses her glow. Sometimes we might find it hard to believe that there is a hero in there, sometimes we might feel we aren’t good enough, that we are failing, but if we stop for a moment and remember all we’ve done, all those things we are.

Are We Pink?

 

Has fundraising for breast cancer research become too closely associated with fashion and shopping? Is the reality of breast cancer trivialised by celebrity endorsements, fashion and glamour?  

Pinkification of breast cancer always results in an emotive discussion. We have explored our views and feelings about the ways in which charities go about raising much-needed funds for research into prevention, treatment and support for breast (and other types of) cancer. 

    Our discussions, which include women with a diagnosis of primary breast cancer and women living with secondary breast cancer, highlighted just how many of us had been involved in fundraising efforts for charities. We run marathons, half marathons, we bake cakes, we make scarves and purses, we do moon and midnight walks. We are proud of our efforts and grateful for the chance to give back - we want to support ourselves and others.

    Yes, we are all agreed that funds are needed, and, we recognise that we are living at a time when funding can be difficult to access. What then can charities do to maximise the prospect of securing funds? 

    In recent years, the colour pink and the pink ribbon have been used to convey a sign for breast cancer. To add to that, clothing, underwear, beauty products, jewellery, flowers and even tea can all be bought in the name of breast cancer (though some pointed out the charities may only recieve a fraction of the cost).

    Many of us have come to detest the 'pinkification' of breast cancer and find the emphasis on glamour, feel-good stories, celebrity endorsement - with the saucy cakes, pink wigs, the ‘nudge-nudge’ taglines, and associations with sexuality - deeply upsetting and even offensive.

    We do not all agree. Some of us wear our pink ribbons with pride. We actively support campaigns like ‘Tickled Pink’.  A few of us argued that just because we buy - or are given - fashion products or indulge in a bit of fun does not mean that we are ignorant of the suffering caused by breast cancer.

     
    Some of us do not feel that the current trend for showing physical scars, and unpleasant, challenging realities is necessary to raise funds. It can also be helpful, some of us thought, that pink is so closely associated with breast cancer since it helps breast cancer charities to distinguish themselves from other deserving causes.

    Pink-washing is particularly - but by no means solely - distressing for women living with secondary breast cancer. They shared the emotional impact on them of seeing a disease which will ultimately be the cause of their death portrayed as frivolous and fun. They also expressed hurt and frustration about the lack of investment into research into secondary breast cancer. Since the average life expectancy after diagnosis is 24-36 months, it is shocking that only a paltry 7% of breast cancer research income is spent on secondary breast cancer.

    Some of us worked for charities and offered an insider perspective of the challenges involved in successfully running an organisation based solely on donations. The point was made that relatively small donations can make a huge difference to small, local charities and they have a significant impact on the lives of individuals they support.  

    Whether we like it or not, fundraising can intentionally or unintentionally project an image of the cause itself. For some of us, this means that charities must consider the image that is portrayed and how the experience of cancer is projected, especially since in this media age we live in, image can be used to communicate the essence of the disease.

    We thought there can be a danger in under-reporting or downplaying the reality of breast cancer. Some of us felt strongly that some campaigns undermine our wellbeing and recovery, for example many of us had found losing our hair traumatic. We are re-traumatised by adverts - one example the “Brave the Shave” campaign. Surely, we wondered, it cannot be right that the very charities who purport to support us are adding to our suffering? We understand that our friends and families are helped by the opportunity to show solidarity, but some of us are vulnerable and we need charities to hold our psychological needs in mind.

    Unsurprisingly, as women already diagnosed with breast cancer we often feel conflicted by the increasing emphasis given to the prevention of breast cancer. Messages aimed at educating the wider community about reducing their risk of developing breast cancer have the effect of making us feel guilty and responsible for developing the disease ourselves. 
    

    Do the campaigns really capture the reality of how we cope through treatment and beyond? Of our scan-anxieties and rates of recurrence? Of the chemo-brain that we experience? Of the pain and long-term effects we experience? A bigger question is, well, should they? 
    

    Most of us accept that it hard to strike a balance. We appreciate everyone for their individual view and for the respect shown to one another. Here at BRiC, we recognise that we do not all have to agree, what is more important is that we have a space to talk openly, to listen. After all, we are in this together!

Relationships and Intimacy

 

It can feel like breast cancer robs us of our womanhood, profoundly changing our intimate relationships - some deepen, some become fragile, some break.  In this discussion we shared how our breast cancer diagnosis had impacted on partner relationships and intimacy.

 

    Our private network 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. For many of our members their first experience of this is hair loss, through chemotherapy. 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 in varying degrees, then it is not surprising that we feel less feminine, less attractive and less confident.  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 extent.

 

    For those in a relationship, having a supportive partner can be a real confidence boost, 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 them in their new, less feminine state. Whichever way, we shared an experience of loss and adjustment, not only during our active treatment, but many years afterwards. Loving ourselves may be difficult at the best of times, but when we’ve been through the trauma of a serious life-threatening disease such as cancer, we must, in our different ways, mourn the loss of the woman we used to be and the woman we thought we might become. Holding ourselves in self-love and believing we are worthy of the love of another may be helped by being kind to ourselves, giving ourselves treats however big or small, from a new lipstick to a spa day or makeover and photo-shoot.

    Communication, self-compassion and self-help can assist us in maintaining our relationships in the longer term. Our diagnosis impacts on our partners too. We need to somehow find a way to adapt individually and together in the face of the changes that breast cancer imposes on us. We heard that lubricants and medications for vaginal dryness and pain are available, via GP, over the counter or online, and can make a huge difference.

 

    In some cases, support that was evident in the beginning waned over time resulting in partners becoming depressed and in one case experiencing a breakdown. Our discussion highlighted the need for professional support to be available for our partners so that were aren't left carrying the burden of their emotional needs along with our already challenged emotional mechanisms.

 

    The importance of our partners being able to talk openly and freely with us about their feelings around our breast cancer is clear, but it seems there are so many that are unable to share how they are feeling emotionally; sometimes for fear of upsetting us, whilst in other examples it’s clear that they don’t want to talk about or discuss the topic.  

 

    We heard that some women had met new partners following breakups just before, during, or after treatment. These women bring hope to those of us seeking new relationships, telling us that the right partner won’t mind how our body looks - but is little comfort to those of us struggling to accept our new bodies and are daunted at the prospect of being on our own forever.

 

    Our ability to cope is enhanced or otherwise, by the level of practical and emotional support shown to us by our partners. This is a recurring theme that highlights, especially if our partners are male, that expressing emotions can be challenging.

 

    We acknowledge as a group that our voices need to be heard, alongside a level of empathy and understanding from our partners about the fears of recurrence and late or on-going effects of breast cancer treatment. Many of our partners seem able to cling to their fears by not expressing how they feel. Support in the form of counselling or other talking therapies has in several members’ experiences been hugely helpful. NHS provision of that kind of support, as a standard package of care, and as a readily available option for partners from the beginning of our breast cancer diagnosis might be helpful in supporting emotional recovery following our breast cancer diagnosis, enhancing our resilience and coping mechanisms.

 

    Just as we are each unique in our experience of breast cancer, so our partners will have different ways of coping. We may influence this, depending on how much we choose to involve them in the nitty gritty of our treatment. Our experience may also depend on how strong the relationship is at the time of diagnosis, how openly we are able to communicate and on personality and coping styles of both of us.

    Whatever our experience of intimate relationships, it is clear that the support and sharing of our experiences and feelings was hugely valuable, even for those who found it too painful to participate. We learned practical ideas to help and found out that none of us are alone in our struggle.

Let's Talk about Sex (or Not): Vaginal Atrophy and Loss of Libido

 

“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”.

 

Here at BRiC, we tackle the most painful and sensitive aspects of our experience of primary and secondary breast cancer. The impact of breast cancer on sexuality and sexual health is a taboo subject for many women, however, we try to introduce interesting and honest discussions about how our sex lives have been affected by surgery and treatments. 

 

    Many of us feel, after surgery, that we are ugly and deformed, with our scars and lop-sidedness, or maybe no breasts at all. The effects of chemotherapy and hormonal treatments stripping off estrogen from our body means that intimacy is difficult. Dryness causes intercourse to be painful, if possible at all, and lack of libido only adds to our problems. This means we are not confident and this dampens our ability to relax and be close. We talked about how some creams may help with vaginal dryness and pain but when our drive is inhibited, the spontaneity and pleasure is almost gone. For some, physical intimacy is loaded with fear, with rejection, and disability.  We can’t deny that breast cancer fundamentally changes us, mind and body. For many, breasts are powerfully associated with womanhood and sexuality. Is it any wonder that our sense of ourselves as sexual beings is profoundly altered.

 

    “I don’t know where my libido is?” “I used to be sexual and have a full-on fiery sex life before breast cancer, but that has all gone now” “Sex? It’s all in the past.”

 

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.”

 

    We agreed that with time we could feel more confident about our body image and intimate relationships, but we will never be the same and we grieve for our old selves.  The mental scars of breast cancer diagnosis and treatment run deep, they plague our self-esteem and disrupt our basic healthy desires. Many of us still struggle to understand who we are as a result of these traumatic changes. From the outside, we seem to be coping well, and moving ahead, but from the inside, it's another story. A story less told.

    

    Very few of us had received any medical or psychological support for these issues. Sex is not mentioned or talked about when we ask about the side effects of treatment. No help is offered.  We often have no one to confide in and we especially don’t want to talk to our partners - we fear their responses or rejection. We may drift into a sexless relationship, trying to pretend to ourselves that it doesn't matter while we silently fall apart inside. So many of us who had enjoyed sex pre-diagnosis found our womanhood stripped from us by cancer. There may also be the expectation for a return to normal, only to find loss.

    

“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 is convinced it’s psychological”.

    We worry that without sex, our partners may seek it elsewhere. Some of us have sex for our partner's sake but we don't enjoy it. For some, our partners are our carers and are no longer our lovers.

“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.”

    It was encouraging to hear that satisfying sexual activity was experienced by a few of us. Trust, communication and sharing vulnerability and experiencing intimacy in new ways had helped. But the few of us who shared success stories were hugely outnumbered by those with ongoing difficulties.  Talking about all of the above helped us all to realise we are not alone, and it was helpful to share tips and experiences, but it highlighted a real need for more support in this area from the outset.