Saturday, 15 June 2019

Weekly Discussion Summary ~ The Healing Power of Art

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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. 


Sunday, 9 June 2019

Weekly Discussion Summary ~ Fear

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“Fear is part of us, just as having cancer is part of us.”

Resilience may be born from fear and vulnerability, if we can learn to embrace it, but when it comes to our cancer-related fears, how easy is it actually to befriend it our fear or turn it to our advantage?

This week we discussed fear, that most primitive and powerful of human emotions which drives our instinct to survive. 

Whether we have primary or secondary breast, we live with fear: women with primary breast cancer experience fear that our disease will recur. Women with secondary breast cancer fear spread or progression of the disease. For many, fear is our daily reality, and is as present as the air we breathe. Cancer-related fear feels continuous, sometimes we can put it aside, sometimes it can be overwhelming. 

Fear, Naz explained, can fuel anxiety and can be a difficult emotion to regulate because it is so intense and raw. 
Research shows that ignoring fear (by avoiding it or suppressing it), does not help us and can even lead to physical illness. Avoiding fear fuels the fire of this powerful emotion which will force its way to the surface in one way or another. In contrast, expressing our fears, though painful, can be a healthier coping mechanism. 

Fear is hard-wired into our brains, so we are on the look out for danger and by helping us to act, it keeps us safe. Fear following a breast cancer diagnosis performs a protective function by helping us to identify threats to our health and by acting to protect ourselves. However, fear can also easily take over us, preventing us from fully taking part in life. 

There was common agreement that we have all experienced a significant increase in fear as a result of cancer. Individually, the specifics of what we fear varies - we may fear treatment, which can make us poorly. We may fear the pain that the disease brings, or, we fear dying in pain. We fear relying on others to care for us. We fear hospitals, appointments and scans - so called ‘scanxiety’. Ultimately, we fear death. We fear not seeing our children grow up, or, not being here for their milestones. We fear leaving our families or our parents. At its most intense, we can feel totally overwhelmed and paralysed by fear.

The physical effects of fear can lead to debilitating physical symptoms - an upset tummy, hot and cold sweats, palpitations, headaches and even panic attacks. For some, fear increases symptoms like pain, confusing our ability to correctly interpret them.

Those of us who were already anxious shared how our breast cancer diagnosis can magnify it, sometimes leading to low mood and depression. Fatigue, caused by treatment, exacerbates our anxiety because we need to use vital mental resources to manage it, and the subsequent mental exhaustion sits on top of our physical fatigue causing us to feel like shutting down.

Cancer-related fear can spill over into other areas of our lives, making us feel generally anxious and fearful.  Our thinking can become distorted, maybe we blame ourselves for our illness or feel guilty for others’ suffering. We worry that voicing our fears might give them substance and make them come true. Some of us believe that if we have survived something as traumatic as breast cancer, then we can survive anything. Some of us feel fearless, until a niggle, a scan  reminds us of our vulnerability like a slap in the face.

For some, fear recedes with time. For others, it’s just as prominent as it was when we were first diagnosed. For a few, it gets stronger with time, as though we feel our luck will run out, especially around the so-called five year and ten year milestones. It emerged that many of us fear that the cancer is more likely to return the further on we are from diagnosis. We feel vulnerable without the reassurance of regular checks or when we are pushed back into the routine screening plans. 

How do we cope with fear?

Some of us try to notice how it feels to move through and past our fear. Some of us try to build a safe, small world where fear is absent. Some of us look to those things that we can control, our diets, our lifestyle. Some of us use our fear to fuel our fire to live as well as we can for as long as we can. Fear enhances our gratitude and the feeling that life is precious. Some of us channel fear into doing things we have up until now been too scared to risk, taking ‘a what have I got to lose?’ attitude. 

We all have days when the fear feels too much. On these days, it’s best to have some quiet time. It’s natural to fight negative emotion and put on that brave face, but acceptance is not the same thing as giving in. Although continuing on is the way many of us deal with it, we admit that it is exhausting. 

Some of us shared that our anxiety has become anticipatory. We are fearful of fear, of how fearful we are going to be at some point in the future, leading to further worry. We can become stuck, asking what’s the point in doing anything when we might not be around to see it through? Some of us feel we make all our decisions based on this fear, but knowing this helps us decide to go against what fear is telling us and get on with living. Some of us fear living more than we fear dying, and we try to live each day as if it were our last, grasping each precious moment.

When we are going through active cancer treatment, we take a ‘one day at a time’ approach. With a goal to focus on, we only deal with each step ahead and can put aside our fears for the future. We focus on what we need to do to get through and for some this means being positive about the day to day and not looking too far forward or at the bigger picture. 

For women with secondary breast cancer, every scan and appointment brings fear of progression. Many of us fear that signs of progression will not be picked up in time. Fear can also be a force for enjoying life, for living in the moment, for not sweating the small stuff. Saying ‘I’m ok, right now’ and being content with that. Fear can drive us to seek out ways of helping ourselves to be well, as we look for different options and information to help us live well. 

If we can accept our fear, breathe it out, use it to energise us, then it can be a force for change, for action, for engaging fully with all of our emotions. Information and knowledge can be empowering, and understanding our emotional responses can help us to equip ourselves to cope. Some of us allow a period of fear every now and again, wallowing in it for a limited time before we pick ourselves up and get on with it.  Others plough through the fear, knowing that worry won’t help any situation, and let the fear simmer in the background. It won’t go away, but it doesn’t have to hinder living a full life. 

Building resilience can help us to stop hiding away from life, giving us the energy and will to face the world despite our fear. Fear is part of us, just as having cancer is part of us. 

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. 


Saturday, 1 June 2019

Weekly Discussion Summary ~ Post Traumatic Growth 2

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Post Traumatic Growth

“We think of resilience as toughness, but it is not. It is sensitivity, it is the ability to shape and grow into a new being.”

This week’s discussion explored post traumatic growth, a concept which refers to the possibility of 'growing' and learning from the trauma that we have endured as a result of (any) cancer diagnosis - we re-evaluate our priorities, our values, and find a deeper gratitude and appreciation for life.  

We thought about the way that our experience of primary or secondary breast cancer had changed us. Many of us felt our lives had changed positively, for example, we have a greater appreciation for who we are and ‘our lives' feel 'better', 'richer' and more meaningful. Overall, there was broad agreement that we had discovered a new and deeper appreciation for many of life’s simple pleasures, things we had taken for granted before our diagnosis, maybe being in nature, or, in the company of our families or good friends.
Some of us felt we were kinder, more self-compassionate, wiser and empathetic. We stop “sweating the small stuff.” We become more assertive, more confident and less apologetic. We shared examples of speaking up, setting boundaries in a stressful work environment, changing and leaving toxic jobs, or toxic relationships. Some of us had developed new interests and skills; maybe we had found ourselves wanting to learn and study or we had found ways to express our creativity, perhaps taking up new interests. Friendship and the chance to make new friends was particularly valued as an opportunity for pleasure and growth.

Many of us shared that we had reconnected with our values, perhaps finding a greater appreciation for 'normal life', home and family, whilst others had experienced a shift in values, perhaps becoming more adventurous or willing to take risks. We open ourselves up to new experiences, doing new things, including things we have never before had the courage to do. 

Resilience, Naz told us, is a concept that is derived from growth post trauma. We think of resilience as toughness, but it is not. It is sensitivity, it is the ability to shape and grow into a new being. A being that is not like the ‘old’ person we were, but where we find an acceptance of the changes, the losses that we endure as a consequence of our trauma. Naz told us that she finds it helpful to see vulnerability as an opportunity, a platform to fly from and to explore what we can make of the changes, the restrictions and the fears, to find what we can reclaim.

Not surprisingly some of us felt more cautious about attributing gains to our experience of cancer - particularly, but not only if our losses are still raw and painful. We reject the idea that cancer is a gift or a teacher. We all know that there is nothing positive about any cancer diagnosis and its impact on us is profound, and for many of us, long lasting. It takes courage to face out trauma, and we need to do this in our own time. Here at BRiC, we do not turn away from the harsh realities of our experience and our treatment. We know all too well that we are tired, fatigued, and our cognitive functions are running low. We also recognise the ongoing challenges women with secondary breast cancer face. Could we, some of us wondered, be at risk of placing unrealistic expectations on ourselves to 'grow' and learn from trauma in light of these challenges?

As one of us has said before, there is a crucial difference between recognising that we can come through the crisis of cancer, resilient and strong, and, coming to the view that we are resilient and strong because we had cancer. It is what Naz termed, the ‘clever me’ which is inside each of us and can turn the experience around to our advantage. Even though we have less control as a result of our breast cancer, we can use that vulnerability as a stepping stone to take back control where we can. It is even possible that post traumatic growth might help us, it might make our journey through trauma easier. 

Our discussion highlighted the importance of avoiding a prescription or a blanket definition that applies to everyone, and we should instead strive towards our own path. Post-traumatic growth does not mean that we will be entirely free from the painful memories of what has happened to us. Our experiences and grief and the challenges we face are part of who we are, not something to be pushed away. But, we can talk to ourselves kindly, and we can learn to accept and understand the significance of our experiences and feelings in ways that validate our responses so that we live our lives more meaningfully. We can learn to see ourselves, and I mean, really see ourselves, in all our flawed and imperfect beauty.

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.

Saturday, 25 May 2019

Weekly Discussion Summary ~ Three Words to Describe Us

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Last week for our discussion we offered a challenge to our members, who are all women who have had a primary or secondary diagnosis of breast cancer: to describe yourself in three words, but when picking your three words try to be kind to yourself. For many of our members this was much more difficult than it sounds. So we suggested trying to think of three words our very best friend would use to describe us, or even actually ask a friend.

Rather than writing the usual summary, the very talented Anita took the words we came up with and produced this beautiful word cloud. 

We suggest that when you're being hard  on yourself, look at the words your friends used to describe you. Then take them. Embrace them. Accept the truth in them.

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. 




Saturday, 11 May 2019

Weekly Discussion Summary ~ Fatigue

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“Fatigue, we agreed, is not the same as being tired.”

In this week’s discussion we explored fatigue, a common and debilitating side-effect of treatments for primary and secondary breast cancer.  

Fatigue, we agreed, is not the same as being tired. It’s a relentless feeling of living in a barrel of treacle, typified by feelings of exhaustion and burnout - physical and mental. Fatigue tells us we are muddling through on empty, our resources depleted, our energy all used up. Sleep and rest does not replenish us. Fatigue may be sudden, constant, or come in waves. 

Coping with fatigue is difficult. Many of us find it hard to acknowledge that we can no longer do as much.  For some fatigue is mild, for others it’s severe. Fatigue hits some of us now and again and is a minor irritation. It can stop others from working, socialising and they feel constantly unwell under its weight.

Insomnia seems a common feature of fatigue. As we become overtired, we worry about not sleeping as we lie awake. We worry that we won’t be able to work, we worry that our families will see us as shirkers, we worry that friends will get fed up with us for turning down invitations or leaving the party early. 

Many of us are learning to pace ourselves. We plan fewer activities on a daily basis and schedule in times for rest. In a world where being busy is highly prized, it can be hard to slow down to our own pace. Working full time can mean me time, social time and family time is squeezed as it takes every ounce of our energy to hold down our jobs, and there’s nothing left for anything else. We don’t do as much as we used to, as much as we would like, leading to feelings of guilt and a loss of self-esteem. 

Many of us noticed that the fatigue caused by surgery, and/or radiotherapy and/or chemotherapy seems to lessen over time. But after active treatment has ended, menopausal symptoms can feed into our exhaustion, either from early or treatment-related menopause, or, from taking hormonal treatment. The effects can be long lasting. 

Those of us with secondary breast cancer, whose treatment is ongoing, often have a level of fatigue that is very debilitating and may be an continuous problem requiring specialist support.

Many of us have experienced the ‘boom and bust’ cycle where we feel great and do loads, only to crash afterwards and be forced to take time out. We suddenly feel totally wiped out and there’s nothing we can do except stop and rest.  

The spoon theory - there’s plenty of information on this on the internet - is useful, but although it helps us understand and validate our symptoms and gives us some language with which to articulate it for others, we still feel frustrated by the times when we just can’t push through, keep going, have a little nap and then feel fine again. 

Many of us described fatigue as a tiredness that is not relieved by a good night’s sleep. It can be a weariness of body but also a heaviness of mind. This, we wondered, may be because our anxiety and fear is using up the brain’s resources and our usual cognitive processes are impaired. This, coupled with the fear and vulnerability that accompanies a cancer diagnosis, decreases our ability to bounce back from low mood. Our brain is preoccupied with the mental trauma and cannot lend as big a hand to our physical recovery as we might like. Keeping our brains active, even when we are forced to rest, may be helpful here. 

Activities can help us to manage fatigue, besides adequate rest, include physical exercise and mental relaxation. Some of us can go to the gym or go for a run, others prefer a gentle stroll in nature or a yoga session. We like to find absorbing things to do to settle and calm our minds, such as reading or creative crafts. Eating healthily helps, and avoiding sugar and quick release carbohydrates which can lead to fluctuating blood sugar causing energy highs and lows. There are courses, books and apps to help us understand cycles of fatigue and this understanding can bring an awareness which can be helpful. 

Explaining fatigue to others who expect us to be ok now that our cancer is behind us - and for some of us, many years behind us - feels impossible and some of us have given up trying. We just smile, say we’re fine. We decline a night out because we know that if we go, we’ll feel awful, struggle to stay awake and maybe we won’t make it to work the next day because it will just be too much for us.

We find comfort in knowing that fatigue is a common experience and that many women suffer from it. This helps us to feel that we are not “weak” or “feeble” for needing to slow down.  

Exercise can help, but it needs to be gradually increased, especially for those with severe symptoms. Many of us who are fit and active still describe experiencing fatigue, and others make the effort to exercise, not to improve fatigue but because we know it is good for our health. Showing self -compassion and not beating ourselves up if we can’t exercise can help us to manage the gap between our expectations and our reality. We do our best. Here is where we share our true resilience. We know we are all different and there is no one right way to improve our wellbeing. 

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. 

Useful articles:

https://www.psychologytoday.com/gb/blog/turning-straw-gold/201606/pacing-the-chronically-ill-person-s-best-friend


Saturday, 4 May 2019

Weekly Discussion Summary ~ Stress and Breast Cancer Risk

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Stress and Breast Cancer Risk

Our discussion this week focused on stress and whether we believe it has had an impact on our breast cancer, both in the original diagnosis and in ongoing incidents of recurrence or metastasis. In line with mixed evidential research, our experiences varied.

For some, a general observation that our current busy stressful lifestyles may contribute to a cancer diagnosis is convincing.  Stress may lead to a lowering of the immune system, an eat-on-the-run poor diet, little time to exercise and poor sleep. Severe stress may lead to generalised anxiety or other psychological disorders. We know that not looking after ourselves physically affects our state of mind and our wellbeing suffers when we are overwhelmed and under pressure. 

But if stress causes breast cancer then everyone who is stressed would get it wouldn’t they? They don’t. 

However, Naz told us that recent research is increasingly convincing in showing that higher levels of stress are predictive of an enhanced risk of getting breast cancer - reminding us that “risk” is not the same thing as “cause.”

We pondered over the specific stressful events that may have contributed to overall poor health - the loss of a loved one, losing a job, financial pressure, not coping at work, problems with children - the list is endless and varied. Some of us were asked about stress by our medical teams, which alerted us to question whether there could be some link. Many of us are convinced that our own personal stress was a contributing factor in their breast cancer diagnosis. A few don't believe there is any link. 

A cancer diagnosis in itself is a stressful event, and may lead to prolonged stress during treatment and beyond.  Relationship problems are common, as is financial hardship. Many of us reported feeling more stressed in general than before our diagnosis, due to the mental and physical challenges we face. A number of us reported that our diagnosis came after a period of high stress, once the stress was behind us.  A diagnosis after retirement or redundancy from a stressful job is not uncommon.

Many of us have looked back on our lifestyles pre-cancer to see what might have ‘caused’ it - this helps us to make sense of what’s happened, and although we know that it’s nonsense to blame ourselves, we do seek the answer to ‘what did I do to deserve this?’ At the end of the day no one cause is proven.  It makes common sense to take care of ourselves and looking after our own wellbeing becomes paramount for many of us. Minimising stress may be one of the choices we can make, but for many it may not be possible to keep stress levels low as life throws all sorts of stressful events at us over which we have no control.  How we react and deal with these events is within our control to a certain extent, and this is where self-care comes in. One example might be in returning to work following our treatment: it is possible to adopt a new approach, to set boundaries and decide to put ourselves first rather than allowing our work to overwhelm us.  The problem is, it’s really difficult to do. 

Some of us have attended courses on dealing with stress and these can be very helpful.  Exercise, getting enough sleep, eating well, mindfulness, yoga and meditation can all facilitate wellbeing, and it’s when we are very stressed and all our usual self-care routines go out the window that we need these the most.  When we are stressed we feel out of control, and sometimes small acts that allow us to feel more in control can really help, perhaps a ten minute walk or three minutes of deep breathing. Finding ways to minimise our stress can help us to feel that we are doing our best to prevent a recurrence or spread of a primary diagnosis, and to stay stable and prevent progression of a secondary diagnosis.  

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.


Saturday, 27 April 2019

Weekly Discussion Summary ~ The Language of Cancer

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The Language of Cancer

In research literature, we are ‘survivors.’*In the media, we are ‘warriors.’* We are ‘fighters’, ‘battling’ cancer through cancer. We are described as ‘positive,’as ‘brave,’ ‘inspirational.’

In this week’s discussion, we shared our views and feelings about the language used to describe the experience of breast cancer.

Whether we are going through treatment for primary or secondary breast cancer, or, we’ve had breast cancer , we are all impacted by our diagnosis. We live with the consequences, with our changed bodies and minds. If we have been given an NED diagnosis - no evidence of disease following a mammogram or scan - we are supposedly in remission.  A temporary state of being, with the fear of recurrence or spread very real, and many of us take medication to help prevent this which brings its own side effects. If we have secondary breast cancer we live with cancer on a daily basis, continuing with treatment to help prevent progression. 

A few of us do feel that we are fighting cancer, engaged in a battle with cancer. This often resonates with us during treatment and because the treatments are so harsh and often debilitating.  Chemotherapy can be particularly aggressive. The image of fighting off the enemy, cancer, may be useful to us in maintaining a positive mindset. We also identify with the battle scars, the mutilation that is breast cancer surgery, and the mental scars that never heal.  Internal battles are real to us as we struggle with pain and fear. The image of the warrior ready to fight, to stand up for herself, ready to do battle if she needs to and to fight with all her being.

To say that someone has lost their battle or fight with cancer implies that the person hasn’t fought hard enough, they’ve somehow allowed the cancer to beat them.  The media uses this terminology all the time, announcing that someone famous is fighting cancer. Obituaries often say that someone has passed away after a long battle/fight with cancer, bravely borne. How can we be brave in the face of something that we didn’t choose, that we have no control over? 

Survivor, for those with a primary diagnosis who have finished treatment, implies that the cancer is gone, we are cured, we are free of the disease. The reality is that it is never over, we are always worried that it will return and statistics prove that we are right to be concerned. For those with a secondary diagnosis, we are living the best life we can, day by day, not merely surviving. Survivor also implies that we have done something right, while those who did not survive did something wrong. In the randomness that is cancer this feels very uncomfortable and can lead to survivor’s guilt, where we feel miserable that we are still here while others aren’t. This can be particularly strong where we have lost family members or where a family history of gene defects is part of our diagnosis. We ask, why us?  We are angry, and yet we feel to blame. The term survivor can also feel like tempting fate. However daunting the thought, we cannot truly call ourselves survivors until we die of something other than our cancer. Then we have survived it. 

Many of us dislike the word ‘journey’ in relation to having cancer, in that we didn’t choose to go down that road, to turn that way. It also implies that there is an end destination, that the cancer journey ends and a new one starts. There is no end.

We may be numb and mute in our search to find words to describe how we really feel about our cancer. It’s like being in a foreign country, and the fight is like the struggle for a breath when we’re under water.  We use the standard terms like survivor in our conversations, our writing, because people around us understand them.  We want to write about, blog about, podcast about, our experiences, in order to help others, and in order to do this we have to use words, we have to share thoughts through language.  

Other people also need to find terms to use to describe us, they need expressions which capture their own fear - the Big C, the worst of all illnesses - and perhaps terms like warrior help them. The terms make sense to other people so why not to us?  Because until you’ve walked a mile in our shoes, it’s so difficult to understand how we feel. 

A more positive term adopted by some of us is 'thriver’. We find our new normal, we move on, we move forward, taking our cancer with us. We can and do thrive, both after a primary diagnosis and also with a secondary diagnosis, in the sense that we are making the most of every day, we are living with gratitude and passion. However, thriver can implies that we are always upbeat, always positive, when the truth is we are often just the opposite. If we are not careful “thriver” can bring with it that “toxic positivity” which can undermine our very efforts to practice our resilience. That might not mean being out there grabbing life, it might mean mean resting, reflecting, convalescing. 

This is how one of our members summed it up:

Don't call me a warrior
don't  call me brave,
don't give me medals
don't give me a parade
I didn't fight 
I didn't win
I didn't choose
I just gave in

I gave in to the doctors
I gave in to the surgeons
I gave in to science that would save my life

But I didn't fight
I didn't win
I didn't choose
I just gave in

We would like you to know that we are not defined by our cancer.  We say: I am. I am still Me. We are, if you must give us labels, women:  partners, mothers, daughters, sisters, employees, volunteers, kind compassionate human beings. 

*I’ve included Oxford English dictionary definitions of these terms for those interested. Words come to mean something different if used often enough in a certain context: 
warrior : (especially in former times) a brave or experienced soldier or fighter.

brave: ready to face and endure danger or pain; showing courage.

fight: take part in a violent struggle involving the exchange of physical blows or the use of weapons.

battle: a lengthy and difficult conflict or struggle.

positive: constructive, optimistic, or confident.

inspirational: providing or showing creative or spiritual inspiration.

remission: a temporary diminution of the severity of disease or pain

survivor: A person who survives, especially a person remaining alive after an event in which others have died.

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 send us a private message via Facebook.