Weekly Discussion Summary ~ Dealing with fear of recurrence

How do we deal with and manage worrying symptoms once we've received the 'all-clear' and finished our active treatment for breast cancer?

The end of active treatment for a primary diagnosis of breast cancer carries with it a mixed emotional response - there is joy and exhilaration that we have finally reached what has been our goal and focus for a very long time. But, we are left alone to cope with all the after-effects of treatment and at a vulnerable point psychologically, as our fear of recurrence may dominate our thoughts.

We are encouraged by our treating teams to be vigilant for signs of recurrence, to report any symptom or pain that lingers and disturbs us. It is perfectly natural then, for our attention to be directed towards any signs so that we can detect anything sinister early, to have a sense of control over the course and progression of any possible cancer-related symptom.

Almost all of us described:
i) experiencing pain, fatigue and new symptoms, or health difficulties following treatment,
ii) the dilemma of what to do, when to seek medical advice or what we should see as 'normal'?
Many of us had experienced 'scares' - bone pain, coughs, ambiguous scan results, lumps requiring biopsy - and going through further investigations and agonising waits for results. For most of us, these 'scares' are usually followed by enormous relief at finding out we are cancer-free, but many of us in the group have experienced a recurrence or secondary breast cancer.

Women with secondary breast cancer described a range of experiences - having symptoms dismissed by health professionals, or long delays; while others felt as though they had been struck by a bolt from the blue, sometimes many years after their original diagnosis, at a time when their fears had subsided. Women with secondary breast cancer experienced vigilance in a similar way to women who had had primary breast cancer, but it is directed at symptoms which might indicate a progression of their disease.

Naz explained that being vigilant for signs of threat is known to fuel fear and anxiety. This is because vigilance is often related to a tendency (or 'bias') to see 'ambiguous' symptoms in a threatening way (for instance, do we think that a persistent cough is secondary breast cancer, or, the lingering after-effect of a virus?) We were all aware of the implications that this vigilance has on our day to day functioning, occupying our thoughts, absorbing our attention and energy, especially when we feel ill or are experiencing pain.

How do we cope?

Some of us seek help straight away. Others adopt a 'two-week' rule (or three) whereby we wait for several weeks to see if our symptoms go away. A few of us avoid going to our GPs because we know they will arrange investigations which we will find stressful. Good advice is to try and remind ourselves that we got sick before we had cancer; that cancer is only one possible explanation for our symptoms. It is, however, a challenge to be vigilant to new symptoms, without over-estimating the consequences of cancer (or other) related symptoms.

Naz explained that our ability to direct our attention towards and away from signs and symptoms that may or may not signal recurrence is largely dependent upon our mental flexibility. She explained her view that it might not be the vigilance for threat that is disruptive to us, but our over-interpretation and the way we can get stuck, going over and over symptoms which we as a potential threat - something Naz called ‘inefficient attentional control’. Because when we are diagnosed with a life-threatening illness like cancer, our emotional brain systems tend to fuel attention to signs of threat simply because we want to survive, it is hard to exercise attentional control.

How have you been dealing with and managing possible signs of recurrence?

Post-Traumatic Growth: Growing from Trauma

I want to see the sunshine after the rain...

So sang Elkie Brooks, and so sing our members, answering the question we posed for this week's discussion: can we use adversity to grow in 'positive' ways?

Trending research shows that resilience can be built following trauma, and that this in turn can lead to positive change. Our members' experiences confirmed that the answer to the question is a resounding yes. Many reported leading more colourful, appreciative and intense lives post-diagnosis, highlighting the extremes experienced as ups and downs, highs and lows, the yin and yang of joy and suffering.

 

The body is hard-wired to heal and the brain has compensatory mechanisms to deal with mental fragility.  Practising self-care, taking care of our emotional as well as our physical needs, alongside self-knowledge and awareness, has helped many women to grow beyond and because of their experience of breast cancer. We have members with both primary and secondary diagnoses, and many in both categories report finding a renewed passion for living, putting themselves first but without compromising their kind and caring sides.  There is a sense of no time to waste, which for some means cherishing a quieter simpler life, and for others being adventurous  and packing in lots of activity.

Many have left stale or stressful jobs, finding new careers which are more satisfying, with some giving up work altogether.  Some have moved to new homes and/or new locations. Many have taken up new hobbies, found a creative passion, or pursued a more healthy and active lifestyle.  Friendships have evolved, with those who haven't stuck with us getting left behind, and new friendships, often made with other women with a similar diagnosis, have blossomed. Families may become closer, old hurts discarded in favour of more nurturing relationships.

 

Life is too short to sweat the small stuff; a saying I'm sure you've all heard, but for us it's true. Little things are what we appreciate: our morning coffee, the sunset, nature. Little niggles we can let go of, realising they don't matter.  Even when it's raining, we look for rainbows and our clouds are filled with silver linings.

Weekly Discussion Summary ~ Guilt 2

This week our discussion explored our guilt and the sense of responsibility we feel for the worry and pain our loved ones experience as a result of our diagnosis with primary, or secondary, breast cancer.

Guilt can be one of the strongest emotions we experience - we feel guilty for bringing this disease into the lives of our families and its impact on our husbands, our partners, our parents, our colleagues, our employers. We feel guilty for exposing our families and friends to worry, fear and uncertainty. Those of us who are mothers are haunted by our sense of having allowed an unspeakable horror into our children’s lives; those of us who want to be mothers feel guilty that we may be unable to give our partners a family.

Some of us described feeling as though we had failed our loved ones in some way. Rationally, we know we are not to ‘blame’ but we can’t help but wonder what it was we did, or did not do, that might have caused us to develop breast cancer. We find ourselves questioning our life-style choices, our experiences and asking whether they could have contributed to our diagnoses. The questions that follow us are: why me? why not me? where did I go wrong? did I bring this on myself? Is this a punishment? We find ourselves taking on responsibility for developing primary breast cancer, for facing side-effects and complications, and if our cancer returns, for developing secondary breast cancer.

Naz explained that we are not as well-equipped to cope with guilt as other emotions. This is because guilt carries with it a strong emotional and cognitive component that justifies this emotion. Usually, our cognitive brain systems regulate or down play emotions that run high, but with guilt, our cognitive systems often serve to re-affirm our guilty feelings. This is one of the main reasons that feelings of guilt can last for a long time - for years post trauma.

Unwittingly, the expectations and reactions of others can re-affirm our guilty feelings. We are advised to - ‘stay strong’, ‘be positive’, ‘your family needs you’, ‘you need to keep going because of them.’ But often we don’t feel positive or strong and these 'sympathetic' comments increase our guilty feelings, we feel we shouldn’t complain, we are supposed to feel ‘lucky’ - because we have a ‘good cancer’, because we didn’t need chemotherapy, or radiotherapy, or haven’t had a mastectomy.

The media, we decided, plays a role in exaggerating these unrealistic expectations: are you strong enough? Brave enough? Tough enough? to ‘battle cancer.’ Women with secondary breast cancer described their emotional anguish as a result of the unspoken, offensive subtext that accompanies these messages - that they were somehow not strong enough or brave enough to stop their cancer coming back. The reality is that our power in influencing cancer outcomes and recurrence is very limited. So we feel doomed to failure. Yet we suffer in silence, unable to talk openly about the realities of secondary breast cancer.

Those of who have finished active treatment described how we want to meet the high expectations that we and others hold of ourselves. But we are exhausted, thrown into an ocean of uncertainty, trying to find a safe harbour to shelter from the storm of cancer which can be a long and turbulent. We want others to understand, to empathise, but we find ourselves mute and numb, unable to communicate how we feel and what we are going through. Some of us described feeling ‘survivors’ guilt’ when we have lost friends as a result of breast cancer.

So can guilt ever be made to disappear?

We can try to prioritise our own needs. We can share our vulnerability so that others see our interior experience as well as the tough image that we project outwardly. We can remind ourselves that we have very little control in the development of this disease. We can forgive ourselves.

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 ~ 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.