Saturday, 17 June 2017

What are you waiting for? ~ Elizabeth

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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/






Wednesday, 7 June 2017

Weekly Discussion Summary ~ Chemo Brain 2

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Summary of our weekly group discussion ~ 7th June 2017

CANCER, CONFUSION AND CLUMSINESS: CHEMO BRAIN

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/

#ResilienceDiscussion


Our thanks to Amanda for this lovely photo. 


Saturday, 3 June 2017

Weekly Discussion Summary ~ Grief and Resilience

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Summary of our weekly group discussion ~ 3rd June 2017

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/

#ResilienceDiscussion

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




Friday, 26 May 2017

Weekly Discussion Summary ~ Improving Physical Health

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Summary of our weekly group discussion ~ 26th May 2017

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/

#ResilienceDiscussion



Wednesday, 17 May 2017

Weekly Discussion Summary ~ Building Psychological Well-being

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Summary of our weekly group discussion ~ 17th May 2017

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/

#ResilienceDiscussion



With thanks to Marie for her lovely photo!


Monday, 15 May 2017

Imposter Syndrome ~ Andria

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Mr Darcy told Bridget Jones that he ‘liked her just the way she was’.  I have often wished that I could like me just the way I was and that wish started way before the cancer diagnosis.

It was only recently after reading an article (in The BRiC Centre's group) about expectations of women dictated by society as well as the individual women and how the continuing striving to be the perfect wife, mother, professional etc. is starting to take its toll on physical and mental health.

In this article it mentioned ‘Imposter Syndrome’, the pressure that we place on ourselves to be perfect and the worry that we will be found out to be flawed in some way. I was able to relate to this feeling in almost all areas of my life. As a mum, not being good enough, not being pretty or witty enough and certainly not being fun enough. As a wife I experienced a similar theme with the first husband (not the amazing second one!), not good enough, pretty enough or sexy enough and all confirmed when he left me for a younger, prettier, sexier lady.

As a social worker this theme has also continued. I feel that I am not good enough, that I will be found out as being a fraud, an imposter. I know from my supervisions, appraisals and feedback from colleagues and service users that I am good at my job, so why don’t I believe it? I guess I would need to look further back to see where these feelings come from but for now I am able to recognise that this is something I do and am able to quietly challenge myself and my thoughts and feelings.

So I was shocked reading that article that I also relate this feeling of being an imposter to my cancer diagnosis! It’s taken me some days reflecting on this, to try to work out why I feel like this and I think it’s because I didn’t have to have Chemotherapy or radiotherapy - thank goodness!!

People have helped to reinforce that feeling of being a fraud, an imposter. ‘You got off lightly’, ‘It’s three years are you still thinking about it?’ and ‘At least you didn’t need chemo’, are some of the platitudes I have experienced. I am lucky, I know that. I did get off lightly because I didn’t need chemo but I have lost both my breasts. I have had a chemical induced and then surgically induced menopause and I am on hormone tablets for another 7 years with all the fun side effects that come with that. I still live with the fear that the cancer may come back.

And after the diagnosis, I haven’t run any marathons, or baked a huge number of cakes to raise money, the imposter inside of me is berating me telling me that I couldn’t even do the fundraising bit properly. My calmer more rational side is telling me that I have got on with doing what I do best…being a mum, a wife and a social worker.

I realised whilst writing this that this feeling of being an imposter is one of the reasons I don’t go to any physical support groups and rely heavily on the online support of the ‘Building Resilience in Breast Cancer Group’. I think I feel ashamed that I had cancer and didn’t need to go through some of the horrendous treatments that my online friends have had to experience. Just reading that sentence is astounding and so sad.

So I can continue to challenge myself and I can change the way I view things.  I can start to be proud of who I am, the good mum, the good wife and a competent professional.

I am Andria. I am a good mum, I am a good wife and I am a good social worker. I have had breast cancer.

I need to stop apologising for the areas that I think I am lacking in and embrace me just the way I am.




Thursday, 11 May 2017

Weekly Discussion Summary ~ Support Groups and Organisations

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Summary of our weekly group discussion ~ 11th May 2017

SUPPORT GROUPS AND ORGANISATIONS

Our Sunday discussion this week was all about groups, charities and organisations from which people have received valuable support. 

As it is Mental Health Awareness week, our centre's goal of helping women with a diagnosis of breast cancer to build their resilience sits nicely alongside cognitive capability and drawing on mental strength to increase well-being. A sense of belonging to a group or t
eam, and the sharing of common yet unique experiences with others, is well known to contribute hugely to mental health.

It was gratifying to find that so many women had received such great support from their local hospitals and cancer centres, but also disconcerting to find considerable inconsistency across the UK. Some of the charities listed are local, some national. Some enterprising women have filled gaps by starting their own support groups and other initiatives, which may help to provide inspiration for others to do the same. This list is by no means exhaustive, but we hope that by putting our heads together and sharing these resources we may be of help to others seeking support. The best known support organisations such as MacMillan and Breast Cancer Care are of course available to all. 

                   ***********************************
The organisations discussed can be found in the existing resource tab here in Panning for Gold: RESOURCES






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

#ResilienceDiscussion







Thanks to Sally for allowing us to use her beautiful photo.

Thursday, 4 May 2017

Weekly Discussion Summary ~ Turning Down the Volume on Cancer

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Summary of our weekly group discussion ~ 4th May 2017

Turning Down the Volume On Cancer

How do we not allow our cancer to dominate our thoughts or define us? How are we more than this diagnosis?

Naz introduced our weekly discussion by reminding us that we had found that cancer is not a chapter in our lives that we can put behind us, but we take it forward with us. We are hypervigilant for signs that our cancer is back or progressing. Our emotional and cognitive brains become out of balance, with our emotional brain dominating as it remains on high alert following our trauma. Naz’s research work looks at cognitive interventions which strengthen the seesaw relationship between the emotional and cognitive brains, exercising and challenging the cognitive brain in order to regulate the emotional brain. 

Many of our members have adopted the popular proven cognitive practices which help to restore the balance, namely mindfulness, CBT and support groups. Our discussion highlighted the value of sharing fears and anxieties with those who understand, and the compassion showed by members for each other's stories was particularly apparent this week.

As you might expect, time is a healer, and the longer a woman shows no evidence of disease following diagnosis, the lower the cancer volume may become. However, for many, fear is constant and upsetting. Many find keeping busy helps, and distract themselves with continuous activity. Poor sleep may find us being visited by cancer demons in the small hours, when anxiety finds a high decibel level. Humour is a great way to dispel fear, and many find spending time with friends and family, doing ordinary normal stuff, is the best way to forget about cancer once in a while.

For those undergoing treatment, the noise of cancer is deafening. Some women turn it down by numbing or intellectualising their feelings. Others are bravely immersing themselves in the high volume and may be feeling desolate, unwell and miserable. However we cope, we are not alone, and our group helps us all through these dark times.

Turning to face our fear through acceptance, and then taking control by concentrating on our own well-being, is helpful. We were reminded that the noise of cancer can be a positive in that it never lets us forget to listen to our bodies, and it makes sure we remember how precious life is. 

Our discussion, which included women with primary and secondary breast cancer, reminded us all that whatever happens, with support and the practice of resilience we can live our best lives, with the cancer noise sometimes gentle in the background and sometimes harsh and intrusive. The seesaw may be out of balance, but we are never alone on it. 

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 leave your name in the comments.

#ResilienceDiscussion

Thank you Debbie for letting us use this beautiful image!




Friday, 28 April 2017

Weekly Discussion Summary ~ How Does Breast Cancer Impact on Priorities and Goals?

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Summary of our weekly group discussion ~ 28th April 2017

HOW DOES BREAST CANCER IMPACT ON PRIORITIES AND GOALS?

'I am a human being not a human doing....'

In this week's discussion, we shared the different ways that living with breast cancer and its effects impacts on our priorities and goals.

Our discussion, which included women with primary and secondary breast cancer, highlighted that the shock of a cancer diagnosis forces us to face our mortality, bringing our lives and identities into sharp focus. Many of us described experiencing a 'wake-up call', perhaps we had always put others' needs first and felt we must assert our own needs; perhaps we felt less tolerant of what now seem minor complaints and irritations; perhaps we had reconnected with our values, rediscovering what's important to us. Most of us shared that we had become more aware of the passing of time; we had realised we must worry less, if we can, and live according to our values.

But primary and secondary breast cancer also brings significant changes - pain, fatigue, menopausal and fertility issues, brain fog and emotional vulnerability - which affects all aspects of our lives, our womanhood, self-esteem, jobs, children and day to day functioning.

Our discussion highlighted the varied and unique ways we face these challenges and the remarkable ways we adapt to changes imposed on us by cancer and it's treatments; for some of us this meant focusing on 'being'; on slowing down, stepping back; perhaps we had discovered we must live the life we have rather than constantly striving for something out of reach. For some of us this meant 'doing'; sometimes as a way of proving that cancer could not rob us of the lives that we so valued; some of us were seeking out new experiences or challenges, for instance travelling, outdoor pursuits or campaigning. Some of us, particularly, but not solely women with secondary breast cancer, shared the different ways they were adapting and adjusting to significant losses alongside dealing with their health needs, giving up careers and valued activities.

Naz reminded us that in essence, resilience is the ability to adapt to life changing events to accommodate our 'new selves'. There is research to show that the ability to accommodate these changes (which is inevitably hard) predicts psychological well-being and lower levels of anxiety and depression, whereas cognitive avoidance has been shown to increase levels of anxiety and depressive related vulnerability.
For some of us, adjustments have been hard to make even though we recognise our changed priorities, perhaps we face barriers which we cannot overcome, perhaps our losses have felt unbearable. Here, being kind to ourselves and practising self-compassion can help us to reach a position of acceptance.

#ResilienceDiscussion

Thank you Karen for allowing us to use this stunning photo!





Thursday, 20 April 2017

Weekly Discussion Summary ~ Our Favourite Things

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Summary of our weekly group discussion ~ 20th April 2017

OUR FAVOURITE THINGS

As an Easter treat our Sunday discussion focused on the little things we do that make us feel better. One of the keys to self-compassion is knowing what helps and making sure we make time for it. Naz talked about making the most of our micro-moments of positivity. She also believes that an eye for little precious moments of joy can be created as well as discovered.

Many of our members have endured invasive surgery and harsh treatments that have attacked the core of their femininity. It's no surprise that many of them seek to look their best, as this helps them to feel good about their changed bodies. However, as the list of feel-good activities shows, the pampering is only a small part of the story, with many women finding their greatest pleasure in being active and challenging their minds. Spending time with friends and family is also high on the list of uplifting activities.

Worthy of special mention is Look Good Feel Better, a workshop specifically for women with breast cancer, designed to help them apply make-up following treatment. 

These are a few of our favourite things! With thanks to lovely member Bal for the aspirational photo!

We love make-up, meditation, music, mountains, massage and mindfulness; shopping, shoes and swimming; the sea, strolling, studying and singing; solitude and socialising; candles, crafting, new clothes and crisp clean cotton sheets; fragrances, family, fitness, fundraising, films, friends, flowers and face masks; coffee, children, cooking, chocolate and candles; books, baths and baking; tattoos, trips out and therapies; holidays, hot tubs, hobbies, new hairstyles, horses and high heels; pets, photography, potions and colour change nail polish; reading, reflexology, running and Reiki; gardens and a glass of wine; walking and writing; audiobooks and art; dancing; yoga; nature, normality, and an attitude of gratitude. As one member put it, 'I remind myself that every day is breathtakingly beautiful. '

#ResilienceDiscussion



Friday, 14 April 2017

Weekly Discussion Summary ~ Impact of Breast Cancer on Family

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Summary of our weekly group discussion ~ 14th April 2017

IMPACT OF BREAST CANCER ON FAMILY

"I need to know the people close to me are okay...."
In this week's discussion, we explored the impact of breast cancer on our families.

Breast cancer impacts on our children, partners, parents, siblings and wider family relationships.

At a time we most need support, our families are under enormous stress and we heard about the different ways people cope and express their feelings; that sometimes families gather together to face our diagnosis with us, but that for others it seems too much to bear and they remove themselves or don't talk to us about our cancer. We heard that there is love and laughter and inevitably there is tension and stress. We heard that some people and relationships crumble, but others are strengthened and renewed.

A universal concern in the group was the potential impact of breast cancer on our children, particularly young children, those with vulnerabilities and at transition points. We heard about the different ways younger and older children expressed their feelings - some, but not all asked questions, or talked about their fears, sometimes behaviour was challenging; some struggled with school or academic work; some support and care for us.
Those of us with partners were aware of the impact of our cancer diagnosis on them, we worried that no-one was looking out for them, that they didn't share their feelings and fears with us, that they were under pressure to be strong. We heard about the amazing variation in the way that partners supported us, practically and emotionally, whereas others simply could not.

Whether we have primary breast cancer, a recurrence, or secondary breast cancer was important - some individuals and families had coped well during one bout of cancer, but then struggled further on. Other factors included - whether we were single parents, had caring responsibilities ourselves, for very young children and elderly parents, and some of us felt a strong sense of responsibility to protect them from the burden of our illness.

Naz only found a few pieces of research on this subject, these argued that that children struggled emotionally and were rated as less competent by their parents, compared with children from families with no breast cancer. However, she considered these results carried biased perceptions from parents and that objective measures of well-being, as well as reports directly from children should be collected over time. A good study, looking at the long-term effects of breast cancer on physical and emotional outcomes, is lacking.

When we previously discussed emotional vulnerability in spouses and partners, we learned that psychosocial support is missing; that partners of those with recurrent breast cancer suffered from high levels of anxiety; that male partners are especially at risk of high vulnerability as they tend not to be open to emotional expression and, as some of us experienced in our group, silently suffer, become unresponsive or can’t find the words.

Not all relationships survive the crisis of breast cancer. Yet, at the heart of our vulnerabilities lay stories of resilience, of women coming through the dark days to meet new partners, of children stronger, more empathic and confident, even though the hidden fears remain. It is clear that our families face our diagnosis with us, it affects them, and this in turn, affects us. https://www.researchgate.net/publication/40760311_Women_with_advanced_breast_cancer_and_their_spouses_Diversity_of_support_and_psychological_distress

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 leave your name in the comments.

#ResilienceDiscussion



Wednesday, 5 April 2017

Weekly Discussion Summary ~ Supporting Women with Secondary Breast Cancer

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Summary of our weekly group discussion ~ 5th April 2017

SUPPORTING WOMEN WITH SECONDARY BREAST CANCER

The topic of this week's discussion was ~ 'How can we support someone with secondary breast cancer?'

Not everyone knows that secondary breast cancer occurs when breast cancer spreads to other parts of the body. Also described as ‘stage 4 breast cancer’, or ‘metastatic breast cancer’, secondary breast cancer is incurable and treatment aims to slow down the spread of disease, relieve symptoms and give the best quality of life, for as long as possible.

Our discussion included women with secondary and primary breast cancer as well as women who have had a recurrence. Women with secondary breast cancer spoke openly about their feelings, including their intense grief on finding out that breast cancer had returned, their challenges, and the different ways they were living rich and meaningful lives with resilience and fortitude.

While women with primary breast cancer fear recurrence, the fears of women with secondary breast cancer relate to progression of their disease, the availability of treatment options and concern for loved ones, especially their children. We heard about the losses that can accompany a secondary diagnosis, for instance, work, independence; that some women feel freed from having to do things they had hated; that some do amazing things and 'live it up'. Everyone, when they feel well enough, described wanting to really make the most of every moment by doing the things that matter most, including travelling and spending time with family and friends.

In terms of support, a number of key things stood out that really make a difference:

• To be supported to get on to lead our lives, as 'normally' as possible.
• To be treated 'normally', to be able to share our highs and lows, to be able to do both fun and ordinary things.
• Practical help can make an enormous difference.
• Knowing we are loved and cared for.
• To be able to have honest conversations with our loved ones about the future, and for our friends and family to be comfortable talking about cancer (we know this is hard - the support for our partners and families is almost non-existent).
• Hardest of all is when those around us seem to want others to pretend it's not happening and, worst of all, are platitudes, saying something like 'you can beat this!' or 'don't worry, we could get hit by a bus tomorrow' just isn't helpful.
• Increased awareness and understanding of secondary breast cancer.

It was shocking to hear about the lack of support offered to women with secondary breast cancer, and, often without access to a designated Breast Care Nurse, having to chase scans and co-ordinate aspects of their care. Opportunities for emotional and psychological support and wellbeing were generally limited, though there were some exceptions, for instance some women described being supported by hospices.

Some, but not all, had campaigned for the needs of women with secondary breast cancer to be understood better, and for many of us, lobbying government is a way to bring about change. It was clear from the experiences shared that secondary breast cancer can occur soon after - and even at the time of - initial diagnosis, as well as many years later.

We are proud that in our group women with secondary and primary breast cancer can stand together in our quest for resilience. Each group has its own fears, and naturally neither group wants to upset the other, but by talking and listening to one another, we can support each other, whatever stage we are at.

If you are a woman with a breast cancer diagnosis and you would like to join our private group, leave your name in the comments so we can get in touch.

Around 35,000 women are thought to be living with secondary breast cancer in the UK. For further information: http://breastcancernow.org/about-breast-cancer/secondary-breast-cancer/what-is-secondary-breast-cancer/how-common-is-secondary-breast-cancer

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 leave your name in the comments.

#ResilienceDiscussion

Thank you Jenny for letting us use your fabulous photo!




Wednesday, 29 March 2017

Weekly Discussion Summary ~ Balancing Positive and Negative Emotions

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Summary of our weekly group discussion ~ 29th March 2017
BALANCING POSITIVE AND NEGATIVE EMOTIONS
This week our discussion explored how we balance 'positive' and negative emotions.
"Think positive” is a phrase we often hear when we are diagnosed with breast cancer. Sometimes we say it to ourselves, sometimes others say it to us as a way of encouraging us. But what does it really mean to 'think positive'? How does it benefit us and are there drawbacks of a 'positive' mental attitude?'
As a group, we shared that adopting a positive outlook had helped us to manage the intense emotions that are in the driving seat when we find out we have primary or secondary breast cancer. Our initial reactions include shock and disbelief; we often have to deal with the practicalities of treatment decisions and schedules, reinforcing our natural tendency to adopt an avoidant style of coping. Many of us described being naturally drawn to avoiding our negative feelings, wishing to appear positive in our interactions with the world at large, and in some circumstances we thought this was helpful. However, draw backs to this attitude include becoming cut-off from our emotions, numb, or unable to share our authentic feelings, leading us to feel isolated.
Some of us shared that we could express positive and negative emotions, and felt this was liberating. Others described consciously or unconsciously finding themselves being drawn to the 'silver linings' - the positives that had come about as a result of our changed circumstances, such as spending time with our children while being on sick leave.
Naz told us about research on cognitive flexibility, its promising influence on mental well-being and encouraging effect on building resilience. The elasticity and plasticity by which we embrace our diverse range of emotional experiences helps us regulate our emotions appropriately and appreciate our experiences, however complex they may seem.
This lyric from the song Elastic Heart, by Sia, helps explain these ideas:
“Well, I've got thick skin and an elastic heart, But your blade—it might be too sharp, I'm like a rubber band until you pull too hard, Yeah, I may snap and I move fast, But you won't see me fall apart, cause I've got an elastic heart”.
In terms of our feelings, this means feeling sad, grieving when we need to and being fearful when it’s necessary. A flexible style of thinking, like the rubber band, is elastic. Naz explained that brain plasticity is not a simple thing to achieve, especially when we have gone through highly traumatic experiences, ones that continue to haunt us. Breast cancer brings with it uncertainty and the danger of recurrence, the progression of disease, loom high. In these circumstances, our brains are geared towards anxiety related thinking styles, appropriately even, hypervigilant for signs of danger, feeding into anxiety and worry. However, this increases our vulnerability.
Naz explained that research shows that our ability to embrace negative thoughts and painful experiences paves our way to allow the positives we experience to nurture us. This is especially relevant to those of us living with breast cancer and its effects because we take our cancer forward with us. Our moments of ‘being down’ can help us to understand ourselves and embracing our inner fears helps us to practice gratitude, and grit. The balance is hard to achieve, but it can be done with practice.
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 leave your name in the comments.

#ResilienceDiscussion

Sunday, 26 March 2017

Weekly Discussion Summary ~ Survivorship

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Summary of our weekly group discussion ~ 26th March 2017

SURVIVORSHIP

What does it mean to survive breast cancer and be a 'breast cancer survivor'? Does the term 'survivorship' offer an accurate description for our many and varied experiences?

These were some of the questions we asked ourselves in our weekly discussion ~ 'What does it mean to be a breast cancer survivor?'

We started by considering definitions offered by the Cambridge Dictionary: 
1. A person who continues to live, despite nearly dying. 
2. A person who is able to continue living their life successfully despite experiencing difficulties.

Theoretically, the notion of survivor makes complete sense, for example as a way of thinking about those who 'survive' a war, an accident, or abuse. However, our discussion, which involved women with primary and secondary breast cancer as well as women who have had a recurrence, considered the limitations of being seen as a 'breast cancer survivor'.

Firstly, cancer is not a one-off 'event' that we can put behind us. Our experiences are complex - very few of us are told we are cured; we need to continue to be vigilant for signs of recurrence and uncertainty remains ongoing. As a result, rather than putting cancer behind us, we take it forward with us, and in this respect our experience is different from other situations.

What about those of us whose cancer comes back? Are we then no longer 'survivors?' Unsurprisingly, those of us with secondary breast cancer could not relate to the term and it was clear that it is particularly insensitive as they are not going to 'survive' breast cancer. Yet, these are women who adapt and continue to live with grit and resilience.

Some of us saw the term as an unwanted label, unhelpful and something of a cliché. Most of us rejected the assumptions that come with the term 'survivor' such as - 'you must be strong!'; 'you must be positive!';'you must jump out of a plane to raise money' etc etc as well as unrealistically high expectations.

There was not a universal rejection of the term 'survivor' though. Some of us felt it was a good fit for describing our psychological journey. Although most of us rejected words like 'battle' and 'fight', we also felt that there were limitations with seeing our experience soley through the lens of treatment and we needed something to describe the experience.

To summarise, we found the meaning of survivor in ‘Planet Cancer' to be ambiguous. We would all like to think that we continue to survive breast cancer to the best our capabilities. The way we do so is unique and what we really need is to be allowed to speak with our own authentic voices about the psychological impact of cancer on us.

Naz told us that the word 'survivor' and the concept of 'survivorship' is everywhere in the breast cancer literature. While some of us see ourselves as survivors, the insensitivity to the implications of using it widely is both upsetting and inaccurate. We need new words and ways of describing and thinking about the complex experience of cancer.

If you are a woman with a diagnosis of breast cancer and you would like to join our closed private group, please leave your name in the comments below.

#ResilienceDiscussion




A big thank you to wonderful Bal for allowing us to use this beautiful picture.