Three things with positive impact in 2020: BRiC's Collective Voice

 

“What three things have made a positive impact on you over 2020?”

In our discussion this week, we looked at things which happened or we did over 2020 which has a positive impact on our lives. By introduction, Naz spoke about how depression can be exacerbated by the disparity between where we are and where we want to be. We have spoken in the past about the “positivity coat” we are expected to wear and that this can make us feel we cannot live up to those expectations. This has been a really hard year for all and we accept that we have no control over many of the events of 2020 but we can seek out those diamonds which we call glimmers of hope in our group. Selectively focussing on positive moments whilst not downplaying the negative aspects is very healthy. With this in mind, we asked the question “What three things this year have you done or experienced which resulted in a positive impact”

This was a lively discussion. There were themes which were cancer/health care related, work/education relates and personal/family related. Not surprisingly, very few of us found a cancer diagnosis or treatment a positive experience. Some did however feel grateful for the care they received from the NHS and that their treatment continued despite COVID-19.






Many of our member had positive changes to their employment whether it be returning to work after treatment, new roles, new jobs or even retirement. There was a feeling of satisfaction for some for a job well done. Some reported they had commenced or completed higher qualifications such as PhD or MSC.

By far the greatest impact came from things we did or experienced with family and friends or at home. Many of us saw the time of lock down a chance to spend time with our partners and children and to have more communication with more distant family and friends using online meeting technology. We loved baking (no wonder there was a shortage of flour!), cooking, making jewellery and having time in our gardens - especially with a spell of lovely weather in spring and summer. Some took time to challenge themselves by taking up writing a book or taking on walking or running challenges. New skills were described too - meditation, Reiki or learning a foreign language. Some of us were lucky enough to have taken a short holiday when restrictions allowed. There were small pleasures too - one member was very pleased that her car passed its MOT!

There were joyful events too - new babies in the family, engagement, weddings and new homes.

There was pride in the achievements of our family and friends; our children passed exams, gaining university places. We were full of admiration at how resilient our partners and children are when facing up to the challenges of this year including our cancer. There was also pride in helping out, such as setting up a regular quiz night or volunteering with the NHS.

Finally, we were grateful for the peer support within this group. The support of our members is invaluable.

"Don't sweat the small stuff": The other side of Cancer

For many, it’s about living life to the full, appreciating all the good things and being grateful for all that we have. Living one day at a time, in the moment. Realising that life is something we want, no matter what. For others, despite anxiety, worry and overwhelm being features in our lives, there’s a renewed desire to live our best life, a clarity of vision like having a new pair of glasses. What we want - and perhaps equally importantly, what we don’t want - becomes clear and our goals crystalise before us.

 

Many of us struggle to say No but we’re learning, and once the word is said (the hardest part) everything falls into place, and this gives us confidence to be more discerning in what we sign up to. Some of us also want to say Yes more often. We aren’t used to asking for help, for going for what we want, again we’re learning. Making a fuss is ok, we matter. We are important, and we are enough. We can look after ourselves, put ourselves first, treat ourselves with compassion and love. We can be assertive whilst retaining our empathy and we recognise that we can actually look after others better when our own needs are met first.

 

Simplicity features for many members, in finding pleasure in small everyday things, feeling the love of family and friends, finding beauty in nature.

 

Many of us are finding ways to turn negatives into positives. We might be used to being the organiser, the one who pulls friends together for outings, and this might feel one-sided. However one member’s friend said to her ‘you are the light for those people who struggle to engage’ and so she can now see her role changed as a positive one. Other examples include being thankful for our lives rather than worrying about getting older, and appreciating our bodies, scarred though they may be, for what they do for us rather than for what we look like. We no longer take our bodies for granted, and we understand that our bodies and minds must be nurtured in order to flourish.

 

A phrase used by many of us is ‘don’t sweat the small stuff’. We find it easier to let go of trivia, to work out what matters. Many of us are more outspoken, prepared to stand up for what we believe in. We will not perform for others or be led like a sheep. However some of us find we are more sensitive than before cancer, although generally we worry less about the opinions of others. Many of us find we slip into old ways very easily, and when we are aware of this we may pull ourselves back but we don’t beat ourselves up about it.

 

There is a sense that we have slowed down, taking more notice of the world and people around us, but at the same time considered carefully what we want to do with our lives and sought out opportunities to make those things happen. We live more consciously rather than just letting life happen to us.

 

Of course we all have down days, when we feel low or unwell. We are wise enough to know that these will pass, and that in order to know our joy we must also experience our sadness. We are not glad we had cancer, but some of us believe it has made us a better person. New friendships are a key positive for many of us, and having the courage to move away from toxic relationships.

 

One member described herself as having become very ‘feelingy.’ Feelings may become more intense, our sensitivity to what is going on around and inside us heightened. Alongside this comes perspective and peace of mind. We have a desire to feel the full range of emotions and to build a happy and fulfilling life. Some of us have a disassociation with ourselves, feeling as though we are watching ourselves going through life, particularly our cancer treatment. We may want to change but perhaps we haven’t yet had time for what we’ve been through to sink in. Our members are at different stages of their cancer, some recently diagnosed and in active treatment, some many years beyond primary, some living with secondary cancer.

 

We recognise that our time on earth is short, and that it’s up to us to enjoy what we are given. We know that worry is fruitless and that we won’t look back on our lives wishing we’d worried more. We know that sharing our experiences helps us all.

Aware of cancer, but not defined by it! BRiC's Collective Voice

Our Sunday discussion focused on how can we be aware of our breast cancer and not be defined by it?

Naz explained that a breast cancer diagnosis leaves us feeling extremely vulnerable, because these vulnerabilities are outside of our choice. We want to hide or shy away from these vulnerabilities, even though we know that cancer is a reality of ours that will not go away, we have to carry it forward by creating a balance between being aware of our cancer and not let it define us.

We have thoughts and emotions at times these can leave us frustrated, angry and anxious, they become part of us, so we learn to cope by not giving into them or to the matter of fact let our thoughts dominate and dictate our vision. Learning to acknowledge, understand, reason and deal with them helps our coping mechanisms, but that doesn’t mean they define us.

Cancer is not a choice that we decided to take on board, it has limited us and has caused psychological distress and the uncertainty has made us face our own mortality, the numerous side effects which we live with daily, have left us with a life threatening fear, so we keep marching on and try to keep working harder for ourselves, as we are often seen as being different by others.

We see cancer as something ‘bad’ which has happened to us, we feel overwhelmed with such life events and the changes experienced. Some of us see this as only one life event, we are the sum of everything else, we have to experience pain to know joy, it is part of our story and if it defines us then this depends on our choices and how we give them importance around the definition of who I/we are. It may be a label that describes us but acknowledging it gives us the power to control who I/we are.

Some of our members disliked being seen or portrayed as a ‘patient’, family/friends and colleagues mean well but often forget what we have been through, for some of us it is ok but sometimes we yearn for someone to hold our hand, a shoulder to cry on or just sit and listen to us without judgement, as we are still living with and beyond our breast cancer journey.

Many of us feel that the Covid-19 pandemic has added to our anxiety and fears for our future health and well-being. Going back to work in certain sectors is going to be an enormous challenge, we will find our inner strength, resilience and the willpower to live the best life regardless of what we are coming up against.

Some of our members found this a difficult subject as it is impossible not to have changed by a breast cancer diagnosis.

The A-Z of hospital appointments, treatments, surgeries, hair loss, weight gain and other body image visibilities when we look in the mirror, have left permanent reminders, which have had an adverse effect to a traumatic life experienced prior to our diagnosis.

Other members found this discussion topic interesting, as acceptance of a primary diagnosis was not given the attention it deserved, brushing it under the carpet and carrying on with life, after a secondary diagnosis came the realisation that we are not the invincible person we thought we were pretending to be. It makes you face your thoughts and fears, by not pushing them away, we learn to acknowledge and accept the diagnosis with compassion and kindness towards ourselves, rather than blaming ourselves. This in turn gives us the power to refuse to let it define us and the courage to stare it in the face every day, fear may take over but we do have a choice both physically and emotionally, we try to live in the moment as tomorrow is not promised.

Finding help and support is key to helping many of us, members found support groups like BRiC, yoga, meditation, exercise, mindfulness, in addition to the beauty of the outdoors and nature, breast cancer charities and many other forms of support from family, friends and colleagues.

Weekly Discussion Summary ~ What lifts our spirits?

What lifts our spirits? What keeps us going? How do we maintain our mental and emotional well-being?

These were the questions we asked ourselves in our weekly discussion, our responses - as you can see - were rich and varied, reflecting our diverse personalities and interests.

In introducing the discussion, Naz told us about the important role played by the amygdala, one of the oldest parts of our brains, evolutionary speaking, which she said has a huge role to play in how and if we pay attention to negative and positive things, as well as the way we interpret things.

Naz explained that the impact of positive activity and interests, even if little and everyday things, can be huge on the brain. The brain learns to feel rewarded with the things that ‘lift’ us, the things that make us feel good about ourselves. This might be the effect of a walk in the park, riding our horse, laughing with our children, a hot bubble bath, a candle we light, a nice cup of tea or coffee, or buying ourselves a ‘lipstick’. These are the things that make us squeeze ourselves with immense levels of joy. Naz told us that as there is no hierarchy for pleasure centres in the brain, it is what we make of and how we interpret things, and how we squeeze out the goodness in the things that matter.

Taking this further, we can build, we can gain insights we can gain, and the resilience. The activity of the amygdala in such re-thinking strategies can be phenomenal and the impact on the brain is huge. When the brain feels rewarded, it communicates rewardingly to the body which can regulate our hormonal and motor systems.

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 ~ Be Positive!

'A smile and a positive attitude may be helpful to healing, but not when it's forced and not when it masks our genuine distress.'

'Be positive!' It’s a phrase we often hear when we've been diagnosed with cancer. Sometimes, it's something we tell ourselves, sometimes it's the advice of well meaning friends. But what does it mean to stay positive in times of despair? How can we be ok with the times when we don't feel positive? These were some of the dilemmas we struggled with in this week's discussion.

Naz explained that when we block out unpleasantness we are at risk of damaging our well-being, whilst if we let it all in and dwell on negativity, we can feel we are becoming dragged down into depression. A balance is what we seek, and cognitive awareness and practices can help.

Apart from the primitive survival-seeking reactive brain, we do have some choice in how we deal with our emotions and our resilience gives us flexibility and helps us to achieve our happiness goals. Embracing sadness rather than pushing it away is key, and allowing ourselves to experience a full range of emotions is healthier than putting on a brave face and pretending we're fine when we are not. A smile and a positive attitude may be helpful to healing, but not when it's forced and not when it masks our genuine distress.

Our members, who have both secondary and primary breast cancer diagnoses, shared activities that help them feel better when distressed. Many and varied responses were given - long walks and baths, family, friends, hobbies, exercise, nature, pets, meditation, breathing exercises. But what emerged from this conversation was a deeper discussion about being authentic, acknowledging feelings and wanting to be real and honest about feeling less than chipper all the time. We aren't self-indulgent about our negative feelings and not one of us wrote about wallowing in self-pity. Some women look for a semblance of control (as having cancer takes this away from us) while others relax into whatever they are feeling and let it go. Some of us keep busy, others seek out peace and quiet.

A positive attitude is often expected of us by others, and of course there are times when we have to temporarily hide away our real feelings and get on with whatever we need to do. What we really struggle with is when it is implied that being positive will cure our cancer. It will not! This is especially true for women with secondary breast cancer, otherwise known as metastatic cancer, for whom treatment continues as a lifelong burden and for whom stability becomes the goal rather than cure. It is very hurtful and undermining to imply that we may have encouraged our illness to spread by not being positive enough.

Being outwardly positive can be a protective mechanism for our fear and vulnerability, but allowing the fear and sadness in also allows us to appreciate the positive in life.

We all cope in different ways according to our personalities, our preferences, our circumstances. What we must admire in all of the women who contributed is that they are working on discovering their negativity triggers and how best to deal with them. Even when bombarded with bad news and significant troubles, they go on. Support from others who understand is key.

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 contact is by facebook message https://www.facebook.com/resilienceinbreastcancer/

#ResilienceDiscussion

Image credit: Buddha Doodles whose images are certain to lift the spirits!

Post-Traumatic Growth: Growing from Trauma

I want to see the sunshine after the rain...

So sang Elkie Brooks, and so sing our members, answering the question we posed for this week's discussion: can we use adversity to grow in 'positive' ways?

Trending research shows that resilience can be built following trauma, and that this in turn can lead to positive change. Our members' experiences confirmed that the answer to the question is a resounding yes. Many reported leading more colourful, appreciative and intense lives post-diagnosis, highlighting the extremes experienced as ups and downs, highs and lows, the yin and yang of joy and suffering.

 

The body is hard-wired to heal and the brain has compensatory mechanisms to deal with mental fragility.  Practising self-care, taking care of our emotional as well as our physical needs, alongside self-knowledge and awareness, has helped many women to grow beyond and because of their experience of breast cancer. We have members with both primary and secondary diagnoses, and many in both categories report finding a renewed passion for living, putting themselves first but without compromising their kind and caring sides.  There is a sense of no time to waste, which for some means cherishing a quieter simpler life, and for others being adventurous  and packing in lots of activity.

Many have left stale or stressful jobs, finding new careers which are more satisfying, with some giving up work altogether.  Some have moved to new homes and/or new locations. Many have taken up new hobbies, found a creative passion, or pursued a more healthy and active lifestyle.  Friendships have evolved, with those who haven't stuck with us getting left behind, and new friendships, often made with other women with a similar diagnosis, have blossomed. Families may become closer, old hurts discarded in favour of more nurturing relationships.

 

Life is too short to sweat the small stuff; a saying I'm sure you've all heard, but for us it's true. Little things are what we appreciate: our morning coffee, the sunset, nature. Little niggles we can let go of, realising they don't matter.  Even when it's raining, we look for rainbows and our clouds are filled with silver linings.

Weekly Discussion Summary ~ Our Favourite Things

As an Easter treat our Sunday discussion focused on the little things we do that make us feel better. One of the keys to self-compassion is knowing what helps and making sure we make time for it. Naz talked about making the most of our micro-moments of positivity. She also believes that an eye for little precious moments of joy can be created as well as discovered.

Many of our members have endured invasive surgery and harsh treatments that have attacked the core of their femininity. It's no surprise that many of them seek to look their best, as this helps them to feel good about their changed bodies. However, as the list of feel-good activities shows, the pampering is only a small part of the story, with many women finding their greatest pleasure in being active and challenging their minds. Spending time with friends and family is also high on the list of uplifting activities.

Worthy of special mention is Look Good Feel Better, a workshop specifically for women with breast cancer, designed to help them apply make-up following treatment. 

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

These are a few of our favourite things! With thanks to lovely member Bal for the aspirational photo!

We love make-up, meditation, music, mountains, massage and mindfulness; shopping, shoes and swimming; the sea, strolling, studying and singing; solitude and socialising; candles, crafting, new clothes and crisp clean cotton sheets; fragrances, family, fitness, fundraising, films, friends, flowers and face masks; coffee, children, cooking, chocolate and candles; books, baths and baking; tattoos, trips out and therapies; holidays, hot tubs, hobbies, new hairstyles, horses and high heels; pets, photography, potions and colour change nail polish; reading, reflexology, running and Reiki; gardens and a glass of wine; walking and writing; audiobooks and art; dancing; yoga; nature, normality, and an attitude of gratitude. As one member put it, 'I remind myself that every day is breathtakingly beautiful. '

#ResilienceDiscussion

Balancing Positive and Negative Emotions

“Well, I've got thick skin and an elastic heart, But your blade—it might be too sharp, I'm like a rubber band until you pull too hard, Yeah, I may snap and I move fast, But you won't see me fall apart, cause I've got an elastic heart” (Sia, Elastic Heart)

"Think positive” is a phrase we often hear when we are diagnosed with breast cancer. Sometimes we say it to ourselves, sometimes others say it to us as a way of encouraging us. But what does it really mean to 'think positive'? How does it benefit us and are there drawbacks of a 'positive' mental attitude?'

In our network, we shared that adopting a positive outlook had helped us to manage the intense emotions that are in the driving seat when we find out we have primary or secondary breast cancer. Our initial reactions include shock and disbelief; we are often forced to make treatment decisions​ and manage schedules, adopting our natural tendency to adopt an avoidant style of coping. Many of us described being naturally drawn to avoiding our negative feelings, wishing to appear positive in our interactions with the world at large, and in some circumstances we thought this was helpful​. However, draw backs to this attitude include becoming cut-off from our emotions, numb, or unable to share our authentic feelings, leading us to feel isolated.

Some of us shared that we could express positive and negative emotions, and felt this was liberating. Others described consciously or unconsciously finding themselves being drawn to the 'silver linings' - the positives that had come about as a result of our changed circumstances, such as spending time with our children while being on sick leave.

Naz told us about research on cognitive flexibility, its promising influence on mental well-being and encouraging effect on building resilience. The elasticity and plasticity by which we embrace our diverse range of emotional experiences helps us regulate our emotions appropriately and appreciate our experiences, however complex they may seem.

In terms of our feelings, this means feeling sad, grieving when we need to and being fearful when it’s necessary. A flexible style of thinking, like the rubber band, is elastic. Naz explained that brain plasticity is not a simple thing to achieve, especially when we have gone through highly traumatic experiences, ones that continue to haunt us. Breast cancer brings with it uncertainty and the danger of recurrence, the progression of disease, loom high. In these circumstances, our brains are geared towards anxiety related thinking styles, appropriately even, hypervigilant for signs of danger, feeding into anxiety and worry. However, this increases our vulnerability.

Naz explained that research shows that our ability to embrace negative thoughts and painful experiences paves our way to allow the positives we experience to nurture us. This is especially relevant to those of us living with breast cancer and its effects because we take our cancer forward with us. Our moments of ‘being down’ can help us to understand ourselves and embracing our inner fears helps us to practice gratitude, and grit. The balance is hard to achieve, but it can be done with practice.

Weekly Discussion Summary ~ Finding the New Me

In this week's discussion we explored the ‘positives’ and ‘negatives’ of living with cancer and its effects and the challenges of understanding the ‘new’ me.

Naz began by asking some challenging questions:
Should the cancer have changed me? For the worse AND better? 
What should my ‘profile’ look like? Stronger? Weaker? Both? 
If both, then how can weak and strong live together in harmony?

Naz explained the huge role working memory plays in our everyday lives and how our responses to cancer can lead to cognitive interference as our working memory is dominated by our vigilance. She believes we need to build resilience. This allows us to develop cognitive flexibility by finding a lightness within our fear and sadness. Bringing together the 'good' and the 'bad' can lead to a new normal which can be special and complete. 

Our responses were diverse: some spoke of physical challenges, and our points of view were partly shaped by whether we were recently diagnosed, living with 'no evidence of disease' or whether we had a secondary diagnosis. We agreed that whether we like it or not, we are not the same, we have changed bodies and feel different. Some of us described feeling comfortable with our new selves. Some of us feel anxiety and fear, a sense of loss and grief for the person we once were. Many of us described seeking new opportunities and discovering a new zest for life, even while experiencing sadness and loss. 

While we could acknowledge that we are different, accepting our new selves is another matter. Many of us experience fatigue, but are reluctant to admit our physical struggles as we don’t want to appear weak, especially at work. The fear of recurrence is strong, but can also be a driver for positive change leading us to adopt a 'can do’ attitude. Many harness this to make life changes, and others say they’ve stopped planning for retirement, preferring to live life now, spending more freely to enjoy the experience of being alive and taking more pleasure in the everyday. 

Some of us look back and cannot relate to who they were before cancer, we are perhaps more emotional, sensitive and empathetic now. Some days we find ourselves grieving for our old selves, we feel lost and want to hide away. Some days we feel strong, we can take on the world. The challenge of being on this rollercoaster is to bring these extremes into balance. 

We learn from cancer that we need to live now. As one member put it: ’The old me was worried about getting old, the new me is scared she won’t get to.’ 

Our overall discussion concluded we are undoubtedly changed. We are weak, AND we are strong. We are darkness AND we are light. We are sad AND we are joyful. 

If you are a woman with a diagnosis of breast cancer and you would like to join our closed private group, please message us on our public page: https://www.facebook.com/resilienceinbreastcancer/?ref=aymt_homepage_panel

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A big thank you to Jo for allowing us to share this beautiful image of bluebells.

Are We Ever Really 'Cancer Free'? ~ Amanda

Getting fed up by my mood swings. Why don't I talk about it anymore they ask, because I'm really fed up with the topic of cancer I say. It feels like everyone has cancer or has had cancer or knows someone who has. Friends dying and friends relatives too. I really try not to be negative about it and I don't want to be a bore, but it's very hard trying to stay positive. So I'm up and down like a yo-yo!

There are survivors out there who really do walk on sunshine for the rest of their days, run marathons and savour each day. I really do try to walk on sunshine most days. But there are days I feel that I have somehow failed for not being all inspirational.

I don’t know if I have cancer cells hiding, waiting to mass again. But I'm a healthy vegetarian and I manage short walks to keep active, within my current pain levels.  All I know is that I am holding steady in a state called "No Evidence of Disease".

I have been told that everything looks great on all my blood work, and my tumour marker is low. But I immediately began to punish myself for everything I’ve done wrong as a survivor, including not eating a clean, sugar-free diet, not doing triathlons, and not being super positive at all times. Even though I know all of that is no guarantee that my cancer won’t come back.

I've had a few scans and “No evidence of disease,” my Oncologist said!  I live a pretty great life, and should be on top of the world!

Death stalks us all, that’s the nature. Maybe survivors are just a bit more aware of it. I cope with short walks. I cope with making fun out of my Franken-tits!  I cope by actively redirecting my thoughts, or so I think, or am I just in plain denial. If I don’t cope and just feel sorry for myself, I just go under and hit the depths of depression and anxiety I'm trying to avoid.

Still, it’s good to complain about being a survivor. I can complain and I will complain! And then, having done so, I will shrug and say, but seriously, it could be worse.

Positive thinking got me through Cancer and I aim to make it get me through life.

Originally posted on Amanda’s own blog on 20^th June 2016:

http://ajscancerjourney.blogspot.co.uk/2016/06/are-we-ever-really-cancer-free.html