Weekly Discussion Summary ~ 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.

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Thank you Debbie for letting us use this beautiful image!

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

Summary of our weekly group discussion ~ 28^th 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.

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

Weekly Discussion Summary ~ 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. 

http://www.lookgoodfeelbetter.co.uk/

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. '

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Weekly Discussion Summary ~ Impact of Breast Cancer on Family

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.

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Weekly Discussion Summary ~ 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.

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Thank you Jenny for letting us use your fabulous photo!

Balancing Positive and Negative Emotions

“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” (Sia, Elastic Heart)

"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?'

In our network, 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 are often forced to make treatment decisions​ and manage schedules, adopting 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.

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.

Weekly Discussion Summary ~ 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.

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