Sunday 21 July 2019

BRiC's Collective Voice: Moving forward

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'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. 

Monday 15 July 2019

Weekly Discussion Summary ~ The loneliness of cancer

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'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.

Saturday 6 July 2019

Weekly Discussion Summary ~ Exercise

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“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.