BRiC's Collective Voice. Mindfulness: Its benefits and drawbacks. Aug. 2, 2019

‘Many reported finding mindfulness helpful during periods of relative calm in their lives, but found it too hard to do when very stressed or sad.’

This week we discussed mindfulness, its benefits and drawbacks.

So what is mindfulness? Here is one dictionary definition:

‘a mental state achieved by focusing one's awareness on the present moment, while calmly acknowledging and accepting one's feelings, thoughts, and bodily sensations, used as a therapeutic technique.’

Mindfulness has become a fashionable panacea for all trauma and distress, the modern antidote to frantic living. Courses are available in abundance, and it’s commonly taught in the workplace and even in schools. There is little research on how it actually works on the brain, and feedback is mixed on its efficacy, with some reports even finding it to be the opposite of helpful. Mindfulness is prevalent in the buddhist tradition and can include meditation and prayer. Some studies show it improves concentration, can help with a good night’s sleep, enhances quality of life.

Many of our women, all of whom have had a breast cancer diagnosis, some primary, some secondary, have found mindfulness very useful. It can be calming in stressful situations to breathe deeply and simply focus on the self or on our surroundings. However, focusing on our emotions can bring up all sorts of negativity and as a result, far from calming the mind, it can cause panic or upset. Accepting a flood of emotion in the moment, when what we are seeking is distraction from a difficult current situation, can be frightening. The idea that with practice we can actually control our thoughts and feelings is perhaps an attractive one, but it is difficult to master, and even more difficult to put into practice when most needed.

The link between body and mind is also the subject of much research, and it is undisputed that relaxing the body via breathing exercises can calm the mind. The vagus nerve is affected by controlled deep breathing and this has been shown to improve equilibrium. Acceptance is what mindfulness teaches, acceptance that the present moment is as it is, and that we are safe in that moment, despite what is going on inside us and outside us. It’s not resignation, a giving in type of acceptance, it’s an empowering peaceful way of keeping ourselves grounded. As one of our members put it, ‘(there are) subtle and not so subtle feelings that can emerge when we are focusing, and how in riding the waves of those feelings, we can drift safely back to shore.’

Visualising a calming scene when we’re feeling anxious can be a useful form of mindfulness - imagining being on a beach with the waves lapping against the shore can be helpful in counteracting the stress of a medical scan, for example.

Our women described many different ways of using mindfulness. Some of us have attended formal courses, some have used online apps, some have read books, some are self-taught. Some are using breathing techniques for relaxation without knowing much about mindfulness, others have taken elements of what we’ve learned, perhaps meditation or a body scan, and we use these to help them to calm our racing brains. Others have picked up on techniques of mindful eating and use these to address healthy eating issues. Yoga may be seen as a moving form of mindfulness, focusing as it does on proper breathing and fusing body and mind in relaxing movement.

Many of us probably practice a form of mindfulness unknowingly. Any focussed task that takes concentration can be done mindfully, and in a way that brings calm and relaxation. Crochet and knitting are a great example. This type of craft is both a distraction and a mindful activity, repetitive and calming.

For deep-seated trauma, such as may be caused by a breast cancer diagnosis, mindfulness may not be the right ‘therapy’ to address the issues. For some, mindfulness brings on sadness and panic, and this is a common reaction and often seen as failure. However this is perfectly normal and just means that mindfulness doesn’t suit everyone. It’s become so prevalent, everyone seems to be doing it. Mindfulness uses bodily sensations to connect to the present, through breathing or observing sensations in the body, and for those in pain or with scars and ‘broken bodies’ this means facing our trauma head on, which is just too much for many. Many reported finding mindfulness helpful during periods of relative calm in their lives, but found it too hard to do when very stressed or sad, for instance following a bereavement.

Perhaps instead of practising mindfulness we could consider slowing down our pace of life, so that we are naturally mindful of our own needs, the needs of others. For those with secondary breast cancer, this slowing down may be enforced by health needs, and for some it reveals a different way of living, a more mindful way of being. Would we actually be better off spending time with a good friend, really connecting, really listening to what’s going on in their lives, as opposed to taking time out alone to focus on ourselves? There is a lot to be said for mindful living.

Mindfulness has found a place in our world and its popularity speaks for its efficacy. However, it doesn’t take the place of talking therapies for deep issues and post traumatic stress disorder (PTSD.) Perhaps the best use of it is to find what works for you and practice that.

If you are a woman living in the UK with a breast cancer diagnosis and you would like to join our private group, please leave your name in the comments or send us a private message.

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BRiC's Collective Voice: Moving forward

'Most of all we want to spend time with the people we love.'

A breast cancer diagnosis can be traumatic and leave us at one extreme numb, or at the other, overwhelmed by our emotion. A diagnosis of secondary breast cancer even more so. This week our discussion focused on what we have found helpful in moving forward: things we have done, things we have changed.

Moving forward, for those of us with secondary breast cancer, means living with cancer on a day to day basis, knowing that treatment will be ongoing.  For those recovering from a primary diagnosis, it's about gaining physical and mental strength with which to live our best lives alongside the ever present fear that our cancer will spread or recur.  

Our women have found many things helpful, both practical and attitudinal.  After the shattered self-confidence which accompanies harsh treatment, learning self-respect, to value ourselves, damaged as we may be, is key. We find that practising self-compassion is vital, as we try to look after ourselves well, allowing ourselves little breaks, treats, gifts to ourselves. We give ourselves a symbolic hug regularly by spoiling ourselves, just a little bit. 

Exercise is very important for all of us. For some, this is a few stretches following surgery, a totter round the house, a gentle stroll up the road. For others, it's a run, a climb, a hike, a physical challenge that says to the world, here I am, look, I can still cut it! Despite cancer, despite extreme fatigue, medication side effects, I'm here, moving to the very best of my ability, even if it isn't as much as I could do before. 

We pay attention to our diet, drinking more water, eating well. This helps us physically and mentally with mood stability.

We are more accepting, less questioning. We see the bigger picture, we no longer sweat the small stuff, although it's the small stuff for which we are hugely grateful and our awareness of that increases. We notice more. We are open and determined and we do things our way, less affected by what others think. 

For some, setting personal goals and challenges is key to moving forward, this allows us to push forward, to help design our own futures. It's the challenge that is the triumph, not the outcome. If we make up our minds not to be limited, we can stretch ourselves a little further each day.  

For others, slowing down and being less busy is what helps us move towards an inner peace, using perhaps meditation or writing, making choices which allow us to experience life in a more reflective way.

We learn that stress may be self-imposed and we learn to say no, we learn not to worry about things we can't influence. We are more relaxed about what we can and can't do and can let go of getting it all done straight away, allowing things to wait and knowing that we've done our best, that it's good enough.

Some of us have tidied up our lives, de cluttering our homes alongside our lives. We want our surroundings to support us not hinder us. We tidy up our friends list too, seeing more of the people who support us and make us feel good. 

For those of us with secondary breast cancer, there may be an intense desire to re-prioritise and doing what we want to do with our lives becomes more urgent. These may be big things like travelling, getting married.  Most of all we want to spend time with the people we love. 

Others may say to us 'Live every day like it's your last' and some of us want to to tick off bucket list items and off we go, cramming it in and making as many memories as we can. For others, it's a gentler approach, perhaps involving living a life much the same as prior to diagnosis, thinking about careers, studying, always having a self improvement goal to reach for. We might change our jobs, reinvent ourselves in new careers which may be more challenging or perhaps less demanding. We might retire, go part-time. We might find a creative outlet or take up voluntary work. We might get a pet or take up a new hobby.   It's about finding a balance, really understanding what we want from life, and making it happen. It's about changing the things we can change rather than wasting energy on the things we can't change. 

Many women talked about how hard it it to make the adjustments needed to move on, whether that's after primary treatment or following a secondary diagnosis.  One thing is clear, with support our members are all making progress, and we are dedicated to helping one another build the resilience needed not only to cope, but to thrive.

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 the public Facebook page. 

Weekly Discussion Summary ~ The loneliness of cancer

'We didn't know it was possible to feel so alone and yet be surrounded by love and people.'

The collective voice of BRiC: the loneliness of cancer. In free verse, in our own words, from one of our recent discussions.

A silent holding of hands

A listening ear

Is that too much to ask for?

They don’t want us to talk about our cancer

Our friends fall away

They block us out

Put distance between us

So much time alone at home,  recovering from our treatment, not just alone, but lonely

We see our scars every day

But we can’t talk about it.

Others don’t get it, they don’t get us

They change the subject

‘But you’re ok now, aren’t you?’ they say

We’ve given up trying to explain

Our emotions belittled because they feel uncomfortable

We hide our feelings to protect our loved ones

We didn’t know it was possible to feel so alone and yet be surrounded by love and people

We feel like ghosts

Not able to be our real selves

We hold back, hold it in, hold on

Deny who we are 

Our cancer is part of us now

We don’t really know who we are anymore

It’s the whole effort of figuring it out, not burdening people with it,

Yet lacking that connection because we can’t explain it

Sometimes we self-impose isolation because we don’t feel 

Important enough to take up other people’s time

And we find it hard to accept support

A lonely place to be, especially at night when the pain is bad

And our minds are working overtime

Are we responsible for our own loneliness?

We’re not OK

We want to be allowed to not be OK

We want to be acknowledged

But they are bored of our journey, living with the legacy

And no-one understands this inbuilt fear

The loneliness of our thoughts

So busy fearing the future that we aren’t living in the present

We’ve learned it’s ours to carry alone,

We withdraw into our little lonely bubble 

Our loneliness a constant companion

Alongside isolation, fatigue, boredom, silence, regret

Where is our joy?

Where is our excitement?

We carry this huge secret,

We want to shout out, ‘if only they know what’s going on inside me!’

We are scared, we are alone, we are lonely in this new world

We walk alone.

Yet there are a few of us, who have limited time left

Who have never felt less alone.  We are blessed to have devoted family 

And our happiness may seem inappropriate

Are we in denial? Or just acknowledging our real feelings, 

Rather than the emotions the situation would seem to demand?

Does it even matter?

For others this is a terrible time,

Thinking about death, we try to be part of the crowd, the living,

But we are sad and lonely there. 

We cling to each other, our cancer friends,

The ones who’ve been there, the ones who understand

Sharing our loneliness through our honesty

And when we reach out to those who understand, we build a bridge

And for a time we can feel less alone

As Joseph Conrad said, ‘We live as we dream, alone.’ 

Alone at night, afraid of the future,

But with hope 

We’re finding our way now

And other special people become our friends

In our parallel world

Our virtual safe space

To be whoever we want to be, and know we are not quite so alone

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 the public Facebook page.

Weekly Discussion Summary ~ Exercise

“We are finding new ways of keeping moving, and celebrating smaller achievements like walking a kilometre rather than running a marathon, sailing a cruiser instead of a dinghy, or cycling on an electric bike rather than a manual one.”

This week our discussion focused on exercise, particularly dance, and how it can help us to feel and cope better with the side effects of cancer and it’s treatment. 

The benefits of exercise as part of a healthy lifestyle are well documented, and it makes common sense that a fit body will contribute to a resilient mind. Our group, which is made up of women with both primary and secondary breast cancer diagnoses, were interested in the specific ways in which dance and exercise help us to feel better. 

Naz explained that exercise may lead us to feel more positive, energised and lighter. Our brains work more efficiently and this, in turn, can lead to better emotional regulation. Exercise can lift our spirits as it releases neurotransmitters in the brain which increase the brain’s reward responsiveness, which may become dormant when we are depressed.  

We shared how we had used exercise, relied on exercise, tried exercise for the first time, given up and restarted exercise, become positively addicted to exercise. Some of us stopped exercising during treatment - either because we felt too poorly, or as rest became a priority, some of us continued as much as we could, while others stuck to a gentle toned down routine. 

For those of us who love exercise and have a strong routine, a breast cancer diagnosis can be extremely frustrating as we may have to modify both frequency and intensity. Treatments like chemotherapy and radiotherapy may put a stop to exercise, and fatigue is a very common problem. When we feel weary, forcing ourselves to get up and move is difficult but may be as energising as rest, and many reported feeling lethargic when they missed a few days of exercise. 

For many of us, exercise is a pleasurable part of our lives.  It may be running or walking, swimming, yoga, horse riding, sailing, gardening, cycling, climbing, rowing, caving, dancing. Any activity that involves repetitive movement can be helpful on many levels. It can also be a mindful meditative practice, calming the mind while working the body. More challenging activities that require co-ordination of mind and body, such as more formal dance where we are learning steps and routines, are an excellent mental as well as physical workout. 

The joy of moving our bodies to movement is evident in the comments from those of us who participate in dance. We listed ballroom, tap, ballet, disco, belly & salsa, and many of us have trained for medals and performances, adding the extra dimension of formally recognised achievements to the mix. Zumba is increasingly popular, and many different fitness through dance classes are now available. Music touches us emotionally and dancing brings our bodies closer to our brains and increases the fitness of both. It brings a sense of freedom as we lose ourselves in the music and move, as well as discipline as we learn new moves. Dancing to the radio whilst doing the household chores is also very popular for us! 

We reported feelings of wellbeing associated with all types of exercise, including a sense of release, of alleviating worries and anxieties. Team games can help with feeling cameraderie, a part of something. Exercise has brought a better night’s sleep for many of us, helping us to feel physically refreshed and rested. Many find it’s helpful in managing anxiety. 

Some of us are continually frustrated that since being diagnosed with cancer we are unable to exercise as much as we used to, with some activities proving impossible due to fatigue, aches and pains, and lymphodema (swelling in the armpits, chest and arms as a result of breast cancer treatment.) We felt that there is a need for advice and physiotherapy to help us and offer individually tailored advice.

Although finding it hard to accept the changes in activity levels forced upon us by cancer, or by the side-effects of our treatment, we are all focused on what we can do rather than what we can't do. We are finding new ways of keeping moving, and celebrating smaller achievements like walking a kilometre rather than running a marathon, sailing a cruiser instead of a dinghy, or cycling on an electric bike rather than a manual one. We keep trying, we stumble, we start again, we never give up. When we feel weary and beaten, a gentle stroll around the block can completely change our mood. 

A breast cancer diagnosis can undermine our confidence, and our eagerness to join in with group exercise can wane as a result. However exercise can also help to rebuild that lost confidence, and many of us have managed to join classes, gyms or teams. For others, walking in nature with friends, a dog or on our own provides peace and calm, and escape from the hustle and bustle of everyday life. 

A breast cancer diagnosis brings fear and anxiety. For some of us there comes the question - what’s the point? We may put all sorts of things on hold, including our exercise regimes, while we recover physically and emotionally from the trauma of our diagnosis. Once active treatment is complete, many but not all of us, reported that feeling able to get back on track and exercising again can feel like one step on the path towards feeling good again.

Exercise related goals and achievements can make us feel good about ourselves, whether we complete a marathon or manage 10,000 steps a day, it doesn’t matter.   There may be days when getting off the sofa and shuffling round the house may be a huge effort, and when we have down days, moving can really help us feel we’ve accomplished something good. 

As an extra positive, a few of our members were inspired by our discussion to get out there and exercise after and reported back about how much better they felt.  However hard it feels initially, moving our bodies undoubtedly helps our minds to function better, so making the effort to find something we love to do is well worth the effort.

If you’re 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 the public Facebook page. 

Weekly Discussion Summary ~ Alcohol and breast cancer

"If we give up drinking will we avoid the return of our cancer? Do we worry our friends look at us a little oddly if we have a drink, are they thinking, well, she shouldn’t be drinking, she’s had cancer. Or, do we find others thinking we’re party poopers because we’ve chosen not to drink anymore?”

Always a controversial topic, we talked about alcohol and breast cancer in this week’s discussion.

Naz explained to us that she had read up on the subject to try to provide a balanced view of the evidence to support, or not, a link between alcohol use and breast cancer. 

Her conclusion - the jury is out: some studies appear to find a correlation, while others may go so far as to suggest that a small amount is beneficial in preventing breast cancer. One challenge is that studies consistently fail to account for other factors and many rely on self-reporting which can be unreliable. They don't factor in the many different types of breast cancer, and they don’t differentiate between primary cancer and the risk of it returning, either as recurrence or secondary. All in all, Naz told us, the view is confused and inconclusive.

As women who have all had a breast cancer diagnosis, whether primary or secondary, we gave a wide variety of views and personal stories related to our drinking  habits. Some of us have never had a drink. Some of us used to be heavy drinkers and have now moderated our drinking habits. Others did not drink before diagnosis but have now decided to take a tipple now and again. Some of us have chosen to give up alcohol since our diagnosis, sometimes as a way of regaining control over our health, but often because we feel just plain ill if we drink! Some have not changed their drinking habits much following diagnosis. 

Many of us look around following our diagnosis to try to find something or someone to explain how we developed breast cancer. We may look at our family history, or examine our lifestyles with a fine tooth comb. Some of us would like to find a reason for our diagnosis since this offers us the opportunity and hope that if we change our behaviour following our diagnosis we can keep ourselves healthy for the rest of our lives. 

Can we blame alcohol, give up drinking, be cured? (or for that matter weight gain - we go on a diet and we are well? Or stress, we calm down and relax, and we won’t get sick?)

This, of course, is magical thinking. 

The list of possible causes is long and varied, and there is evidence to suggest that some types of breast cancer can take many years to develop. We look back to our lifestyles and events from years ago. Could it be the age at which we hit puberty, we wonder? The age at which we gave birth to our children? Whether we breast fed our children? Whether we took the pill or HRT or had a Mirena coil fitted? 

Was it what we ate? How little exercise we did? Our weight? Whether we smoked? Or something fixed such as blood type, a faulty gene, family history? 

We can be disappointed to discover that no one factor is involved. Getting breast cancer is, at the end of the day, just rotten luck. 

Some of us find it empowering to take control of things like of our diet and alcohol use. But there can also be a huge pressure to make changes to our lifestyle at a time when we are psychologically vulnerable. Even worse, some of us had experienced critical comments if we don’t make any changes. The upsetting assumption being that we brought this on ourselves in some way.

If we give up drinking will we avoid the return of our cancer? Are we concerned that our friends might look at us a little oddly if we have a drink, are they thinking, well, she shouldn’t be drinking, she’s had cancer. Or, do we find our friends thinking we’re party poopers because we’ve chosen not to drink anymore?

Our choices around alcohol may be affected by our treatments, for example chemotherapy can make us feel nauseous and can intensify the impact of alcohol on us. For others, a little drink is a pick me up during a difficult time. Some of us felt that hormonal treatments can enhance the effects of alcohol and intensify hangovers. 

Whatever our position, we want to make informed choices based on current knowledge, how we feel about alcohol and how alcohol makes us feel when we drink it. We don’t need to be made to feel to blame!

For many of us, enjoying a drink or two is a regular activity and represents the balance between enjoying life and remaining healthy. It is a way of relaxing that many of us are happy with, and we feel we’ve earned it!

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 the Facebook page. 

Weekly Discussion Summary ~ Coping with Tamoxifen and other Hormonal Treatments

Coping with Tamoxifen and other Hormonal Treatments

The topic for this week’s discussion was ‘Coping with Tamoxifen and other Hormonal Treatments.’ 

Our discussions about Tamoxifen and other hormonal treatments for breast cancer are among our most commented upon. We are struck by the struggles that some women experience and some of us suffer significant adverse side effects. It may be that for every woman who struggles, there are several who tolerate the drugs without problems, but we suspect these are few. What baffles us is not only the lack of support and information available for women prescribed these treatments, but for many, the lack of recognition given to the cumulative impact of these effects on our quality of life. Since many of us are now taking hormonal treatments for ten years (some of us for five), that, we agreed, is a long time to be taking tablets that make us feel unwell. 

Very often, our active breast cancer treatment finishes - surgery, chemotherapy, radiotherapy - and then we are sent off into our futures with a packet of pills, and the message we are given is that we are now “well” and we can carry on with our lives. Our experiences point to a very different reality and many of us feel far from well.

There is substantial evidence to support the effectiveness of tamoxifen and aromatase inhibitors (letrozole, anastrozole, exemestane) in preventing a recurrence of breast cancer. These drugs work by eliminating oestrogen from the body, thus providing protection against oestrogen fed cancers. It’s important to bear in mind that there are many different types of breast cancer, and each of us will have her own individual treatment regime. For those cancers not oestrogen receptive, such as triple negative breast cancer, there is no equivalent ongoing drug, which can leave those not taking medication feeling unprotected and vulnerable.  

Generally speaking, Tamoxifen is given to pre-menopausal women and AIs to post-menopausal women, as the drugs act on the body in a slightly different way, but we do find many older women commonly taking Tamoxifen so this is not a hard and fast rule.

For those of us who tolerate these drugs well, there is a significant comfort factor in knowing we are doing all we can to prevent the recurrence of cancer, although it needs to be remembered that taking these tablets can be a daily reminder of breast cancer.  For those of us who suffer side effects that compromise their quality of life, this can present a huge challenge. The list of side effects is varied and long, and may include: menopausal symptoms such as hot flushes and bone, joint or muscle pain, mood swings, fatigue, weight gain, vaginal dryness and impaired cognitive function to name but a few. Many women reported feeling below par all the time, and unable to fully enjoy life as a result. As a lack of oestrogen may affect bone density, this needs monitoring and is a further worry. For some of us, the side effects are so bad that we cannot tolerate these treatments, and so in consultation with our oncologists, we experiment with different versions of the medication and we try to address the side effects with counteractive treatments. For a few of us, there comes a point where we just feel so awful that we decide not to continue taking the drugs. 

The difficulty is that for these women, there just isn’t enough help and support in managing the side effects. It is a worry that women give up the drug without knowing that they may be able to take action to feel better and find that they can keep going after all.

Our previous discussions focus on how we feel when taking these drugs, and our summaries are available on our website. There is also a specific piece on branding. 

https://bcresiliencecentre.blogspot.com/2018/11/weekly-discussion-summary-tamoxifen.html

https://bcresiliencecentre.blogspot.com/2019/02/weekly-discussion-summary-hormone.html

What action can we take to help ourselves whilst on Tamoxifen or AIs?  

Trying a different brand is often what it takes to settle the side effects, and sticking to one brand once we’ve found what suits us can also be helpful. This isn’t always easy as pharmacies tend to supply the cheapest option at the time, but it is possible with the help of a friendly GP and pharmacist who will specify and fulfil a brand named prescription. 

Side effects may be more severe at first, so it’s worth persevering to see if they settle, but also we think that side effects may be cumulative with aromatase inhibitors as our body’s oestrogen becomes more and more depleted. 

Hot flushes may be helped by a mild dose of an antidepressant, and some women have found acupuncture helpful.  

Joint pain is helped by regular gentle exercise. Supplements may be helpful, such as magnesium, and we suggest consulting a medical professional before taking these. 

Taking short breaks to allow the body to recover may be useful, again in conjunction with our GP or oncologist. 

Our advice to anyone taking these drugs is not to suffer in silence, but to seek help. Speak to your GP and have a frank discussion. Groups like ours, we agree, can help hugely as we share tips and support each other with our issues.

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.

Weekly Discussion Summary ~ The Healing Power of Art

The Healing Power of Art

This week’s discussion explored the role of art and creativity in supporting our wellbeing following a diagnosis of breast cancer, highly topical in light of it being the 9th annual Creativity and Wellbeing Week.

Art is a powerful form of self-expression. Art is not about success, nor, can you fail in it. Art is about communicating with your inner self, your feelings and your thoughts, what is hidden inside you. Art and creativity can be a means to express and a means to reflect on what is difficult to talk about. We can use art and creativity to express our state of mind. 

Even more intriguingly, art can gives us back some control in the face of significant turmoils. We can control what we sketch, craft, sculpt, knit, draw, sew, paint, or write.

Naz told us that art can be a form of therapy which comes with promising effects with post traumatic stress disorder, anxiety, depression and a host of other related emotional vulnerabilities. Art can be helpful to our emotions and to our coping styles. Art can also influence brain plasticity, the ability of the brain to grow in resilient ways, to form and strengthen pathways that can help us regulate our emotions.

While many see art and science as independent we see them as interlinked - art is about creativity and science about discovery. We need creative minds to make big discoveries!

We asked some of our amazing members if we could share their awe-inspiring creations. This is just one of a series so watch this space for more!

#BRiCMembers
#Creativity

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 page.