Saturday, 28 April 2018

Weekly Discussion Summary ~ Can art offer a pathway to resilience?

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This week's discussion explored our experiences of playing with our inner artist and we shared how making art and other creative projects helped us to cope with the effects of breast cancer.

Naz told us that the brain mechanisms behind creativity involve letting go, a kind of mindlessness, the brain shows. Perhaps we feel art rather than think it? Resting our brains can lead to new ideas and problems can be solved without thinking about them. Resting our brain through art engages a part of the brain called the default mode network (DMN) and this can assist us to regulate our thoughts and emotions, it can re-energise us and bring harmony to our racing and anxious thoughts. Although not fully understood, art in a therapeutic sense can bring us resilience via an increase in our ability to access our own inner strength.

Our members, who are women with both primary and secondary breast cancer diagnoses, described a myriad of different forms of creativity that they found helpful, from playing a musical instrument to painting, photography to poetry, glass-work to knitting and crochet, beading to writing plays. Many women had found writing helpful during and after treatment, as a way of dissipating uncomfortable feelings, though some had felt their creativity was paralysed.

For some, art is an escape from the everyday, and can be described as both mindful and mindless. We have a sense of losing ourselves in single-minded focus on a creative activity which frees us from our fears and anxiety. Discovering a new hobby or creative outlet can lead to increased confidence and sometimes new friends. Some picked up an old passion that they had loved when they were younger, perhaps a paintbrush or a musical instrument they used to play. For others, a journey of discovery into a new area of creativity has helped find a new pastime. Whatever direction our artistic and creative interest took us, it was clear that art offered them a sense of renewed purpose, and giving pleasure to others by sharing their creations with others was another reward.

Many use their art to help others, perhaps selling items for charity, donating them to people in need or giving them away to friends. This sharing of something handmade, unique and personal can bring huge joy to both maker and recipient. Some creative pastimes provide special alone-time, while others, like singing encourage us out into the world. Many of us had found choirs and other singing groups to be extremely helpful in providing a joyful confidence building experience.

Naz directed us to this study which provides evidence that art can increase our coping resources: https://www.cambridge.org/…/EA9826AAA21ED90CCC2FE37043D69BE9

Undoubtedly we are a group of talented creative women! Our enthusiasm for art indicates our dedication to self-care, a big element of building resilience. Each piece of art created, whether it’s a cardigan knitted for a baby, a blog about cancer, a heartfelt poem, a music recital, a memorable painting, or perhaps a song in the shower or a nicely presented meal, holds some of the essence of the creator.

If you are a woman living in the UK with a breast cancer diagnosis and you would like to join our private group please send us a private message via our facebook page: https://www.facebook.com/resilienceinbreastcancer/


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Friday, 20 April 2018

Weekly Discussion Summary ~ Financial Impact of Cancer

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This week our discussion explored the financial impact of cancer.

Cancer causes significant financial hardship and worry about finances adds to the sense of threat and uncertainty we feel when we are diagnosed with breast cancer - how will we be able to support ourselves and our families? We feel helpless and vulnerable. Cancer results in a loss of earnings, for very many of us who are unable to work. Increased heating and food costs as well as frequent visits to hospital - sometimes over long distances - are just a few of the examples of the other ways that cancer causes additional costs at a time when we have less income. With increasing rates in diagnosis of breast cancer, and amongst women of working age, we are at high risk of financial distress and adversity.

Cancer charities like Macmillan and Maggie's can be great, and many of us had relied on help and support to access appropriate benefits, a temporary reduction in household bills or mortgage repayments. Not all of us had positive experiences though, and some of us had been poorly advised, had benefit applications rejected and had to go through an appeals process, or had poor experiences with our banks and building societies.

Even those with more positive experiences felt that the focus tended to be on short term financial help and advice during treatment. But what about the longer term?

For those of us with primary breast cancer, the trajectory of ‘recovery’ isn’t linear and we continue to take our cancer ‘effects’ forward with us. Post traumatic stress symptoms can linger for a long time after diagnosis. With threats to our self-esteem and self-confidence, the variability in our ‘recovery’ and our change in priorities due to the uncertainty we face, we remain at a disadvantage and continue to be at a higher risk of long term financial insecurity. Fatigue is another big factor as at times even if we want to continue what we love doing, we can’t, and we have to take a step back.

Those of us with secondary breast cancer described how financial uncertainty caused additional stress and worry which impacted on both our physical and emotional well-being and our ability to pursue our goals, especially for those who had been forced to give up much-loved careers. Although those who could work part-time (depending on their role and the support available) shared how important this was in terms of finances, many felt that work was just not something they could contemplate, especially if they were on an intensive treatment plan which might require daily appointments at the hospital.

Some amazing entrepreneurial suggestions were put forward about ways to earn money but very many of us simply felt we did not have the energy to invest in anything other than trying to keep up with our usual routines and staying as well as we could.

Our discussion highlighted that being able to remain in work could be very beneficial, allowing normality and earnings to be maintained. But this comes at a price, we can feel exhausted if we can't take time off and we need to manage our energy and the expectations of those around us. A few of us had critical illness cover and income protection which had been an enormous help, but it's important to check the small print to check the limits of cover.

Being able to access to advice from knowledgeable and informed advisers, a reduction in outgoings and support from our families were just some of the factors which helped to increase our resilience. Those who were younger, single parents, carers, students, or had multiple health conditions appeared to face considerable adversity. It was clear that the challenges continued in the longer term - we have debts to re-pay, we change or give up careers, we don't pursue promotion, we can find it difficult (or even impossible) to get mortgages and travel insurance costs are high. We continue to worry about what the future holds and how the financial strain will affect us longer term.

If you are a woman living in the UK with a breast cancer diagnosis and you would like to join our private group, please send us a private message via facebook 
https://www.facebook.com/resilienceinbreastcancer/



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Saturday, 14 April 2018

Weekly Discussion Summary ~ Partner's Emotions and Anxieties

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Our partner's emotions and anxieties, through treatment and beyond

This week our discussion focused on our partners and their fears and worries about us when we are diagnosed with breast cancer. 

There is very little research looking at the impact of a breast cancer diagnosis on the partner of the woman diagnosed. This is both surprising and disappointing, as what little does exist suggests that the effect on a partner's feelings of fear and uncertainty is huge. The availability of tailored specific support for partners is alarmingly absent.

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

Female partners may have additional vulnerability as their fears for their own health may be tangled up with worry for their partner: of course, men do get breast cancer but it isn't as common. Women with primary and secondary breast cancer are members of our group, and for those with a secondary diagnosis, for whom treatment is lifelong, our partner's feelings and fears may be even more complex than for those with a primary diagnosis where an end date for treatment will be a future goal. The period at the end of treatment is a crucial point for women with a primary diagnosis as partners expect and want things to return to 'normal', to be as they were before the diagnosis. This return to how things were isn't going to happen and it can cause rifts in even the strongest of relationships.

Some partnerships don't survive a breast cancer diagnosis. Some women describe partners becoming distant or troubled. Others describe their partner as their rock and experience a deepening of their closeness. All the women who took part in our discussion talked about being concerned for their partners, worrying about the effect of their breast cancer on their partner's well-being. Some try to protect their partners by not sharing everything with them, others want every detail out in the open.

Many women described their partner as the stereotypical male, reluctant or unable to talk about their feelings, and spoke of many of them using hobbies to escape and distract themselves. Many women praised their partners for their ability to just be there for them, with a squeeze of the hand or a hug backing up their matter-of-fact attitude and practical assistance.

Counselling is of course available privately, but this only suits those who like to talk. Perhaps a support group in a pub setting, designed to help men bond and share experiences, to realise that they are not alone, might be helpful. For many women, there is a recognition that our partners may benefit from some kind of support intervention, but we weren't at all sure what that would be.

If you are a woman with a breast cancer diagnosis and you live in the UK, you are welcome to join our private group. Please send a private message to our public centre page 
here and we will get back to you.

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Wednesday, 11 April 2018

Research at BRiC ~ Training Cognitive Control to Reduce Emotional Vulnerability in Breast Cancer

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Research at BRiC

Please give a huge cheer for the brilliant and beautiful Jessica Swainston, seen here on the right with BRiC's head, Prof Naz Derakshan

CONGRATULATIONS on the recent publication of their paper, "Training Cognitive Control to Reduce Emotional Vulnerability in Breast Cancer" in Psycho-oncology.

Huge and heart-felt thanks to all those participants who took part in the intervention and for helping us build our research programme on resilience.

Here’s a preview: https://www.ncbi.nlm.nih.gov/pubmed/29631328

The full text will be available on line soon so watch this space!




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Friday, 6 April 2018

Weekly Discussion Summary ~ Happiness

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'There is a crack, a crack in everything. That's how the light gets in.' Leonard Cohen.

Happiness.

Hard to define, so elusive, what is happiness and how can we find it?

How do we know when we are happy?

Our weekly discussion looked at being happy in the context of our breast cancer diagnosis.
Happiness may be fleeting, but it can appear at unexpected moments as an appreciation of the small simple things in life. Often, unhappiness is easier to conceptualise than happiness: we know what makes us miserable and sad but working out what makes us happy isn't so easy.

Perhaps happiness comes with embracing whatever is happening, not wishing things were different, and not trying to isolate or compartmentalise our emotions. Our experience often falls short of our expectations, and our ability as human beings to ruminate on the past, and to wish our lives away hoping and dreaming for a particular future, may contribute to feelings of discontentment and disappointment.

As we talked about happiness, we struggled with definitions and how happiness relates to contentment and joy. Some of us were able to list things that we enjoy, that make us happy. Many of us find we no longer fret about issues that used to bug us, and we appreciate things more. We have happy times, happy moments, happy events, but we aren’t sure whether this makes us generally happy. Some women mourned the loss of happiness, which they felt had disappeared following their breast cancer diagnosis. Others felt ashamed that they don’t feel happy, when surviving cancer ‘should’ lead them to make the most of every moment of every day. Many agreed that happiness isn’t something that can exist in every moment, but that finding something to be happy about every day is usually possible. Gratitude and appreciation help. For many, their moments of happiness are clouded with negative feelings – fear, sadness, disappointment, anger. Happiness is spoiled forever because of their diagnosis.

We may have a heightened sense of gratitude, and perhaps we feel everything more intensely because of our experience. We’d still prefer never to have had cancer though.

A cancer diagnosis is devastating in so many ways, and for lots of us, we now believe that when things are going well we are lining ourselves up for something to go wrong sooner or later. This may be because our cancer diagnosis came as such a shock. It is always traumatic, whatever our age or circumstances. It always interrupts our lives, as treatment necessarily makes us stop. When we return, we are different. This is difficult to embrace and so happiness eludes us. Many women expressed a sense of having lost that carefree happiness they once had, but if we are lucky it can be replaced with a sense of inner peace, with deeper relationships (for some of us, facing our mortality makes us braver in telling those we love how much we love and appreciate them) and an acceptance that if our time on earth is to be cut short, then we may as well get on with living our lives our way.

Living in harmony with our values, and having a strong sense of who we are, being true to ourselves, appears to be key to happiness for many women. Perhaps happiness is linked with who we are and what we strive for, our goals, and having a life with purpose and meaning. Our society has certain expectations these days and for many women, cancer means they want or have to step off the treadmill of modern life and find a new way of living. This is particularly true of women with a secondary diagnosis, for whom treatment is lifelong. Our group is for members with both secondary and primary diagnoses. For our secondary women, the promise of tomorrow is even more fragile and they may become more adept at living in the moment. Gone are the thoughts of ‘I’ll be happy when’ (I'm thinner, I have a new car, we go on holiday, I get a new job,…’) and these are replaced with finding happy moments to treasure each and every day. Long term planning is no longer an option and many happy times are tinged with sadness. Finding happiness for these women is hard work, but they do find it, every day.

If each of us can find our own way to be happy, and not worry about what others expect of us or what society dictates, then we may have a chance at living happily. This could mean slowing down, or packing in as much as possible. It may mean family, travel, meaningful work, helping others. Perhaps resilience means coping with adversity with a smile, and that smile leads to happy times. We all acknowledge that in order to feel happy we also have to feel sad, and all of us know how it feels to be sad. This gives us a great capacity for joy, and ultimately for happiness. As one of our women succinctly put it, we are happy to be alive!

If you are a woman living in the UK with a breast cancer diagnosis and you would like to join our private group please message via our facebook page 
https://www.facebook.com/resilienceinbreastcancer/


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