Weekly Discussion Summary ~ Intimacy After Breast Cancer

Is it possible to be intimate, physically and emotionally, post breast cancer diagnosis?

This week we focused our discussion on the vulnerability that is often not expressed or talked about openly, because of the embarrassment that it brings upon us. While targeting a difficult, yet most needed to disclose subject, we talked about how surgery and breast cancer treatment can severely undermine our confidence about our breasts, our ability to be sexual, and form, as well as sustain, intimate relationships. One of our most powerful sexual organs, that used to be sensual, is now not. It is numb, scarred, and deformed, or no longer there. We talked about how this affected our womanhood, our sense of being sexual and the way in which we perceived our bodies.

For many of us: we are ugly, deformed, lop-sided or without breasts. For many, the effects of chemotherapy and hormonal treatments stripping off oestrogen from our body mean that intimacy and intercourse is difficult and very painful. Dryness and lack of libido adds to our problems. Feeling ugly and not confident dampens our ability to be close. We talked about how some creams may help with vaginal dryness and pain but when the drive is dampened for most of us, the pleasure is almost gone. For some, physical intimacy is loaded with fear, with rejection, and disability. What does this say about our womanhood? Our sexuality?

We talked about how for some, the role of an understanding partner helped. We often felt sorry for our partners, guilty sometimes, and felt that they were better off with someone else. Some relationships could be at stake due to the ghostly impact of fatigue and a lack of desire to be close. We concluded that the ‘new’ me post diagnosis is an ill-understood concept that brings with it many changes impacting relationships at a fundamental level. Emotional fragility doesn’t help physical incompetence and the latter fuels the former.

We wanted to have the ‘old’ me back. We talked about how the old me was pretty, sexy, and fruitful. But for many younger women, it is not possible to conceive to have children as a result of treatment anymore, escalating the impact of breast cancer on femininity.

We agreed that with time we could feel more confident about our body image, our intimate relationships, but we will never be the same. The scars of breast cancer diagnosis and treatment run deep, they plague our self-esteem, can rob us from our womanhood, and dampen our basic healthy desires. No, we are not the same, and for many of us we still struggle to understand who we are as a result of these fundamental 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.

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/

Thank you to Sally for the beautiful picture

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Weekly Discussion Summary ~ Breast Cancer Doesn't Define Us

In our discussion this week, we introduced ourselves without mentioning the 'c-word' and discovered how extraordinary we all are:

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.

  

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/

Thank you to the incredible Judy for allowing us to use this amazing picture of her scuba diving. Judy is determined to maximise life on the basis that ‘you never know what’s around the corner’ and has now clocked up around 400 dives!

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What are you waiting for? ~ Elizabeth

What are you waiting for? Finding positivity in adversity 

My name is Elizabeth.  I was diagnosed with breast cancer three years ago aged 43.  After all my surgery and treatment I thought the journey was over and that the worst was behind me.   But having had breast cancer is such a frightening experience and I know from speaking to others and through The BRiC Centre Private Group that I am not alone in the anxieties and fears I carry. Fears about my future, my children’s future, about keeping well. 

It’s all too easy to focus on the negatives in life beyond cancer treatment.  But having cancer also brought good things and I wanted to share something really positive that came from my diagnosis nearly three years ago. Cancer gave me an insight into how precious life is.  It taught me not to take things for granted.  That the time to do it, whatever it might be, is now.  And every time I thought of something I wanted to do, it made me ask myself "what are you waiting for?"

I work in the child protection/legal field and when I returned to work I found it very stressful.  Not just because of the work but because of the worries I face every day and the side effects of the prior and on-going treatment. 

I realised that I wanted life to be about more than cancer, work and being a mum. I wanted something for me, something mindful and relaxing.

So having put it off for my whole adult life, I decided to pursue my dream.  I reduced my work hours and started a course on fused glass on a Thursday night last January. I took a 16 week course called Warm Glass at City of Glasgow College and when that finished I was so ‘hooked’ that I began to attend an open studio night at Stained Glass Supplies in Glasgow even attending during the day in the summer holidays when the open studio night was on holiday too.  The guys in the studio were endlessly patient with my never ending questions and requests! 

I am now, 16 months later, the proud owner of my own kiln and my husband and I worked together over the past few months to create my own home studio in the garage. It's the most rewarding and enjoyable hobby and most importantly, it is relaxing and instantly washes away the stress of any day.  I am just at the beginning of this new journey with glass, learning new things every day, and now with some friendly sales and craft fairs under my belt, who knows where the future will take me?

So my challenge to you is - ask yourself, no matter how fanciful, big or small the idea or dream...what are you waiting for?

https://www.facebook.com/ELKArtGlass/

Weekly Discussion Summary ~ Chemo Brain 2

This week the focus of our discussion was chemo-brain, a catch-all term for the 'brain fog' that many women experience post cancer diagnosis. Commonly attributed to the after-effects of chemotherapy and trauma, it may also be present for those who have not had chemotherapy, and in the longer term, hormone treatments and fatigue may also be contributors.

Chemo-brain has long been a controversial issue, however recent research has provided evidence to substantiate brain changes which are significant enough to show up on scans. Our members provided consistent anecdotal evidence for these changes.

Women at various points following a breast cancer diagnosis (our group supports women with both primary and secondary diagnoses) reported living in a brain fog and being unable to function as well as they did before. For many, this leads to frustration and anxiety, with many feeling less competent at work and in their home lives. A resulting loss of confidence was reported by many, with those who have to attend meetings at work struggling particularly. 

We forget names, we lose track of conversation, we feel lost and foolish when memory incidents affect us in public, although most of us are able to laugh at ourselves too! We are unable to spell, write, read, perform basic maths or remember why we walked into a room. Some have found clean washing in the fridge and have picked up other people’s keys in an effort to remember their own. Some have fallen, dropped things, knocked things over. Having a foggy mind can lead to a clumsy body, which may not be such a laughing matter. 

We make lists, use our phone alerts, take copious notes, muddle through. Sometimes those around us are sympathetic but many of us have experienced the frustration of others as they find us different to how we used to be. Some women practise letting go and have found some comfort in acceptance, feeling pleased that they can drop the veneer of being in strict control.

A key point made by several women is that they worry that their forgetfulness may come across as rude or uncaring. Many are hard on themselves, others more able to go with the flow. Some spoke of increased anxiety, others noted a reduction. All those who contributed reported a significant change in their ability to think clearly and a difficulty in adapting to their new state of mind.

Despite these troubling experiences, Naz was quick to point out that there is help at hand. The brain has a plasticity that can be altered by cognitive exercises, and mindfulness and relaxation can be very helpful. Strengthening neural pathways via systematic cognitive practices may help us to rebuild the weakened parts of our brains.

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/

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Our thanks to Amanda for this lovely photo. 

Weekly Discussion Summary ~ Grief and Resilience

Have you experienced grief following breast cancer?

In our weekly discussion we explored the relationship between grief and resilience. 

Grief, because it involves sadness, crying, hopelessness and even depression, can be seen as a ‘negative’ emotion. We seldom encounter a conversation that encourages us to grieve over a significant loss and instead we are encouraged to move forwards.

Our discussion revealed the many ways women with primary and secondary breast cancer experience loss - the loss of a once care-free life; of normality, of womanhood and sexuality, others described losses associated with the side-effects of treatment, others spoke about the loss of a career and those of us living with secondary breast cancer described grieving for others, or the loss of hope for a future with loved ones.

Many of us described putting on a ‘brave face’ or being ‘positive.’ Some of us were surprised to find that we had not thought about grief in relation to our experience of breast cancer. Those of us who had experienced the loss of a loved one found ourselves comparing our bereavement with our experience of breast cancer and we heard that experiencing a bereavement while dealing with the emotional impact of breast cancer shaped and coloured women’s experience of grief in profound ways. 

The numbness and detachment we commonly experience are our body's defence mechanisms which help protect us and cope with the agonising pain. For some of us, the overwhelming instinct to avoid any painful feelings continues - some of us shared that we did not know how to grieve, either because we were afraid of the depth of our feelings, or because we wanted to protect our loved ones.

Naz told us that recent research has shown that grieving after trauma and significant loss allows us to heal. Recent studies looking at the longitudinal effect of trauma on physical and mental health have concluded that those who managed to grieve for significant periods of time were in better health physically and emotionally in the long run. A process of grieving helps us to come to terms with our losses. To do this, we rely on our cognitive functions which help us to regulate our emotions and as we know only too well, run high in the face of the uncertainty and trauma that accompanies the rollercoaster of breast cancer.

Minimising the traumatising effects of breast cancer and the pressure to be so-called positive - for those of who have finished active treatment, this might mean, putting the ‘cancer chapter’ behind us to move forward; for those of us with secondary breast cancer, this might mean we have to completely deny the reality of our situation - can interrupt the grieving process, increasing our emotional vulnerability to distress, anxiety and depression.

Grieving after loss does not mean that we put our lives on hold and get stuck – it opens the way for curiosity, exploring an emotionally rich life that acknowledges our sorrows, releases tension moving us towards resilience and flexibility. It helps us adjust. It helps us to heal.

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/

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Many thanks to Vicky for allowing us to use this beautiful image.

Weekly Discussion Summary ~ Improving Physical Health

Steps to improving our physical health after a diagnosis of breast cancer

Our discussion this week looked at how we have tried to improve our physical health after a diagnosis of breast cancer. In the introduction, Naz explained that there is evidence that improving diet and taking exercise can improve the after effects of treatment for breast cancer, particularly fatigue. 

We discussed the techniques we have used and whether they helped in the longer term. There was a feeling from a number of us that our bodies had let us down in developing cancer. For some of us, that came as a shock after not taking much notice of our bodies which had up till then been reliable and healthy; for others it felt a betrayal of a life of good diet and exercise. 

Most of us had changed our approach to exercise and to a lesser degree diet after breast cancer. For some, exercise incorporating mindfulness was helpful - for example yoga, dancing, walking our dogs. For some, more active forms of exercise such as swimming, running and cycling were useful. It seemed important to ladies with secondary cancer to maintain some fitness and exercise through often continuous treatment where possible.

Some of us used fitness trackers such as FitBits; others felt they added too much pressure and could result in fatigue. Many of us had experienced a crash in energy levels after trying to increase activity levels too quickly and there was a strong theme of pacing ourselves.

There was less discussion of dietary changes interestingly although some of us had radically changed our diets or had added a regime of supplements. Slimming clubs were helpful to some but others found them judgemental. 

There are clearly many ways to move forward with physical health and it feels an important topic for us - not least in that it allows us to regain some control over a body which has betrayed us.

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/

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Weekly Discussion Summary ~ Building Psychological Well-being

Our discussion this week was linked to Mental Health Awareness Week ~ we asked: what are the things that have helped build our mental flexibility and psychological well-being post diagnosis, and how have they benefited us?

Seeking help to support our psychological well-being involved many pathways: from mindfulness meditation, exercise, yoga, CBT, acupuncture, reflexology, hypnotherapy as well as anti-depressants…. Naz told us that there is a whole diverse literature emerging, though sparse evidence has substantiated the effectiveness of complementary therapies.

Importantly, the mechanisms by which they work are unknown, partly explaining why we haven’t been able to develop more targeted interventions. We do know that exercise releases feel-good hormones and the link between mind and body isn’t under dispute.

The majority of those who took part in our discussion had sought support for their mental health and general well-being in some shape or form, and many have taken up new challenges and hobbies. Strong themes of taking control of health and fitness, peace of mind and well-being emerged, although with modification as many of us find ourselves unable to pick up where we left off at diagnosis in terms of demanding jobs and stressful lifestyles.

Fatigue is an issue for so many, and limits energy and often the enthusiasm for high maintenance mental and physical regimes. As the trauma of a breast cancer diagnosis leads to a reassessment of priorities, so a measure of balance is often preferred to being over-busy. Learning to relax, rest, and perhaps meditate, is a huge challenge in our driven high-achieving superwoman society. The strongest message coming from the discussion is the desire to find what works, and to draw mental strength from it.

A common story from our women is that while in active treatment they were coping well, moving from appointment to appointment, dealing with harsh side effects and adjusting to the fact of their diagnosis. Some worked through treatment as a distraction, others took time off, and for most it was just a case of getting through it. Once active treatment has finished and there is time for reflection, many women find themselves unhinged and vulnerable, unsure of themselves and their capabilities. Physical changes, mental fog, an uncertain future – all contribute to a particular type of post-traumatic stress.

Our wonderful women have found, or are finding their way through all of this, and their strategies are as diverse and unique as they are. They run and write poetry, they meditate and try hypnotherapy, they learn mindfulness and create with glass. They take up dancing, learn to swim, have a go at art therapy, try yoga, Nordic walking or join a choir. They make jewellery, care for their children, or grandchildren, they walk in nature, read a book, write a book. Many of us described experiencing anxiety, low mood and some of us depression, and while medication has its place, it is interesting to note how many women were determined to deal with it by other means than medication.

Counselling is a popular choice, though some of us had found it hard to access appropriate services. It was valued most when available via Macmillan or support centres and many found it helpful to have an objective space in which to process their feelings and come to terms with their experiences. It’s common not to want to share everything with friends and family for fear of upsetting them, and of course groups such as ours come into their own here too. Our discussion included women with primary and secondary diagnoses, and an important factor for our members with secondary breast cancer is to find activities which allow them to live their lives without being constantly reminded about cancer. We all relish ordinary stuff like hanging out with friends and family as well as seeking support from specialist organisations.

What shines through our discussion is our determination and grit, our desire to find a new normal after diagnosis and to live each day as well as we can.

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/

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With thanks to Marie for her lovely photo!