Our Values and Priorities

 

‘Now it is about living one day at a time and being kind to ourselves, perhaps we are more spontaneous’.

Our ''Values and Behaviours'' and how these may have changed since our cancer diagnosis.

    Let's start with a personal values definition. Personal values are the things that are important to us, the characteristics and behaviours that may motivate us and guide our decisions. Living by them sounds simple in theory and it should be natural to live by them, but sometimes it's not so easy.

    Naz mentioned how she challenged and supported a student's 'fate' during discussions with the university board and suggested that standing up for the 'right' thing to do is a sign of truly living by our values and behaviours, like fighting someone's corner! Being bold, assertive and determined to put ourselves first, we may be bolder and heartier and find laughter. However, crying out loud is not a weakness but shows our inner strength.

    Some members enjoyed personal achievements or we enjoyed treating family and friends, make donations to good causes, which gives us a sense of belonging.

    We tend to worry less about material things because they are less important, silly things don't matter as we are only human, and it’s about self-acceptance, self-compassion, self-forgiveness. People and their feelings are the real meaning in our lives.

    Often, we enjoy our own company which is about self-care, self-love (compassion) and happiness.

    Our outlook in the workplace changes and we take action for a better work/life balance as our life is precious, just as much as the lives of those we love. Watching TV all afternoon or treating ourselves is not laziness or being extravagant, we re-frame it as self-care.

    We might value making a difference to someone who needs help to live their life well, as every second counts and we put things into perspective, a bit like looking through a different 'lens'.

    Planning for the future used to be an activity that was part of our daily routine, now it is about living one day at a time and being kind to ourselves, perhaps we are more spontaneous. Taking risks which we may not have dared to take previously, it’s about bending the rules. We no longer save clothes for 'Sunday' best, we now enjoy wearing them every day, as we have learned that 'NOW' is all that matters.

    Appreciating every breath we take, valuing simple things in life, embracing our existence, valuing our changes and learning to accept/live with our 'new normal'.

The Imposter Syndrome

 

When we doubt ourselves, feeling inadequate or incompetent, despite evidence to the contrary, we may be experiencing Imposter Syndrome.

It has been shown that women experience this more than men and even though gender inequalities are gradually decreasing, seemingly strong and successful women often feel inadequate, as if their lives are based in fraud. Michelle Obama referred to imposter syndrome as her weakness.
These feelings can be intensified when we are faced with trauma, such as a breast cancer diagnosis.

    Side effects from breast cancer treatment often leave us with problems which add to these feelings, memory loss, brain fog and concentration issues, fatigue and restricted mobility can all leave us feeling less able than our colleagues and friends. Long absences from the workplace may create fear about how we will cope when we return; we might feel we are failing as mothers because our illness prevents us from doing many things, or that we are letting our friends down when we can’t keep up with social engagements.

    The trauma of breast cancer can bring back memories of previous difficult experiences, such as childhood events and toxic relationships; these memories can so easily lead us to a belief that everything is somehow our own fault, that we are not worthy of a better life or capable of success. Many of our members talked about doubting their abilities so much more after their diagnosis and treatment, despite holding down jobs, caring for families and leading busy lives. Our self-doubt is contrary to what we actually are, but it raises its ugly head on a regular basis. We worry about making fools of ourselves, about making changes, trying new things or forming new relationships.

    We talked about how being compared unfavourably to others compounds these feelings. Many of us recounted incidents from childhood where we had been made to feel less worthy than a sibling or classmate, being told we were no good at something or would never amount to anything. Incidents we had long since forgotten, or locked tightly away in our minds, were brought back into life by our diagnosis and life with cancer. Our group has members with both primary and secondary diagnoses, for members with a secondary diagnosis there were the additional problems of on-going treatment restricting what they can do and of people treating them differently, as if their views were somehow less important because of their cancer. Other members said they almost felt like cancer imposters because they had been able to avoid chemotherapy or radiotherapy and as such felt like they were somehow less of a cancer patient.

    There was an underlying belief that the way we are treated by others is somehow a reflection of ourselves, that we don’t deserve any better. “Nothing I ever did was good enough” was a phrase used often, and is a feeling that can stay with us throughout life, affecting everything we do. We talked of waiting to be found out, that our public persona was hiding our incompetence and any moment someone will see us for what we really are. Another common theme was difficulty accepting praise; equally many of us mentioned that criticism hits us hard, bringing to the fore those feelings of incompetence and inadequacy. When criticised we feel that we have been seen for what we really are, that our fraud has been uncovered and we can no longer feign competence.

    Some of us have found ways to build our confidence, to give no credence to the opinions others hold of us, to be our own selves and be proud. It is often easier to believe the “bad stuff” about ourselves and we are all learning to also believe the good. We are strong, we are successful, we are perfectly imperfect, we are businesswomen, mothers, partners, teachers, managers, artists, dancers, singers and many, many more things. We make mistakes, but that’s OK, we can learn from them and grow even stronger. We are not inadequate or incompetent and we are supporting each other to build our resilience and fight that imposter.

Menopause

 

We've had some heated discussions on Menopause, its impact on us and how we deal with its effects. Our discussions have revealed that chemically induced menopause, through breast cancer treatment, affected those of us who were in our 30s and 40s, as well as those of us who had experienced a natural menopause prior to diagnosis. We agreed that the severity of a chemically induced menopause was much greater than a naturally occurring one. For those of us who’d already experienced menopause there was also a chance to be affected by it yet again.

    A running concern through our comments revealed the lack of communication from our medical teams about menopausal side effects and how to manage them. We needed to research “treatment induced menopause” ourselves and seek help on how best to manage the symptoms, which are often debilitating. There were very few ladies who had more manageable symptoms. Many of us were grateful to support groups like BRiC for providing some information on how to address our individual issues.

    Menopausal symptoms are challenging to say the least. BRiC members discussed a vast range of symptoms affecting our quality of life: from vaginal atrophy and dryness, to lack of libido and sexual dysfunction threatening our ability to maintain intimacy. Then there’s brain fog, forgetfulness, joint pain and cramps, plus fatigue and hair loss, as well as weight gain - and let’s not forget hot flushes and insomnia. The list goes on…

    For a large number of us, such symptoms persist for years post active treatment, mainly sustained through endocrine therapies such as Tamoxifen, Anastrozole and Letrozole. The impact of these symptoms adversely affects our workability, with many of us reporting that we’ve either had to scale down, take early retirement, or change jobs to less-demanding ones. Our self-esteem is affected and our confidence is diminished in the workplace, with some of us reporting we felt dumb and stupid (something also pointed out by family members). A radically induced menopause with full blown symptoms can leave us emotionally and physically shattered and increase our vulnerability to anxiety and depression.

        We discussed the possibility of supplements aiding in the management of menopause, though these were organic developments not necessarily prescribed by our medical teams. Some of us mentioned Vitamin D and Calcium with Magnesium, as well as cod liver oil. Any supplements taken should be discussed with our medical teams we noted. Some of us mentioned that acupuncture has helped and many emphasised the positive effects of exercise and diet, though shedding weight even with a balanced diet and regular exercise was a challenge for many. The benefits of exercise are long documented and research from BRiC shows that challenging our brains in adaptive ways can help with brain fog, improving cognitive health. With research documenting a causal role for cognitive function in protecting against anxiety and depression, this self-management tool can only empower us with the control that cancer has so cruelly taken away.

    

    Unfortunately, unlike cancer-free women, HRT is NOT an option for us as it can fuel recurrence and increase our chances of secondary breast cancer especially if our original diagnosis was hormone related. In fact, some of us wondered if our diagnosis was fuelled by HRT in the first place. In addition, many women who are not affected by breast cancer do not know that HRT is NOT an option for us, so some comments on how HRT can help us may come across as insensitive. The sad fact is that there are no simple solutions for us.

    

    No one specific symptom of menopause affects us in isolation, they are very much linked, providing a difficult environment to function healthily, even on a good day. Our emotional, sexual and cognitive health are all interlinked as our bodies work in harmony. A collective threat to our basic functioning is psychologically damaging and our members' experiences clearly demonstrate the emotional and physical pain they endure. There is an urgent need for measures to be implemented in order to systematically address menopausal effects, longer term.

 

I Am Enough: (Not) Perfect

                                                 

                                                

.... The already strong pressure to be perfect and how it may be intensified following a diagnosis of breast cancer. As always, our lovely ladies identified common themes but also confirmed that everyone's experience is unique.

    As women living in today's busy world, the media tells us that we should strive to be perfect mothers, sisters, partners, daughters, friends, even perfect patients. All around us are airbrushed images of beautiful women juggling careers and children, smiling through every kind of adversity. Often after cancer we look much like any other woman on the street, well and glowing. We hide our vulnerability behind our positivity, we don't want to upset anyone by mentioning our big secret. Even those who have secondary breast cancer and face a lifetime of treatment and monitoring report striving to maintain the brave faced smile. Fear and vulnerability take a back seat so that we can appear strong for our families. Thank goodness for groups like ours where we can share our feelings and thoughts!

    Having breast cancer may force us to make difficult decisions that scupper our long held dreams: for those who have children, we may feel we can't be good mothers, as we may have to hand over their care to others while we are unwell for example; for some, cancer puts paid to having more children; others may not get to have children at all. Careers get put on hold; some ladies choose to stop work, others just aren't well enough anymore so they have to stop. We feel we fall short, that the life we thought we were going to have is ruined. Physically and mentally it's tiring having cancer, fearing cancer, and many ladies can't do as much as before their illness (but it's unlikely that you would know that: they hide it well.)

    There are lots of things we feel we ought to be doing. One is running a marathon, or at least a 5k race for life, as soon as we finish our last radiotherapy session. Some achieved this and did well, others succeeded but exhausted themselves, and some didn't have the energy to get out of bed, much less bake for the biggest coffee morning in the world. However we feel though, we do get up, do our best, smile and get on with being positive, almost every day. And if occasionally we succumb to feeling tired and low, and we take to our sofas or our beds, we feel guilty and weak. Not good enough.

    Having breast cancer can teach some valuable lessons too. Many ladies report becoming softer, calmer, more relaxed, more approachable. Many ladies have learned to say No, and to seek out what makes them happy and not live to please others anymore. Many care less about what other people think of them. With messy reconstructions, one boob, lumpy bumpy lopsidedness, many learn to dress for comfort not glamour. Our new normal may surprise or upset our friends and family as we relinquish roles we thought were carved in stone, realising we have more choices than we thought we had. Our inner strength, the resilience we build, starts to shine.

    Many report that they have been able to let go of high standards and high expectations in favour of enjoying life. We commonly discard housework! We take pleasure in the simple everyday things like walking in the autumn sunshine, enjoying a coffee with a friend, or reading a book. Perhaps for some, particularly those ladies who are older, breast cancer brings an opportunity to take stock, to decide what's important, and to live life our way.

    However our breast cancer affects us, none deny that we are changed. Some feel guilty that they got off lightly with treatment or surgery; some feel they've let themselves and others down; some feel like failures, as if it's somehow their fault. Not only can they not achieve perfection, they feel less than good enough. And that's a subject for another discussion.

Goal Setting

 

                                    

'I'm planning to swim the English Channel.'

Our desires and initiatives and how we go about achieving them.
    
    When we are diagnosed with cancer, our goal becomes about survival. We want to live. An outcome that feels highly uncertain in the face of our fears. For women with secondary breast cancer, part of the psychological challenge is coming to terms with an incurable disease and survival becomes about the here-and-now. Naz explained that these anxieties form one of the biggest contributors to depression - because of this fear in the 'bigger picture', the 'process' of attaining this ‘huge’ outcome can receive little attention, and the building blocks or pathways by which the process can shape are usually difficult to identify.
    
    When we set ourselves goals, we can open up a vast desire for living in the now, and doing what we usually postponed to tomorrow. Do we ever make a list of things we want to do, or do we question whether we can do them given the uncertainty we face?
    As a group, our goals were both small and ambitious, varied and unique, reflecting our individual personalities and values, but here are a few examples: Move house. Change my job. Read Anna Karenina. Sing. Learn to ride a horse. Swim. Do one thing that scares me. Lose weight. Dance. Write a novel. Learn to say 'no'. Get through the day without breaking. Swim the English Channel.
    
    Many of us described wanting to live to see our children achieve independence, support them, teach them, love them. Setting long-term goals was something many of us found a challenge - we felt we might 'tempt fate' to take our hopes and dreams away from us. Some of us identified setting goals as a source of energy and inspiration. Others described drifting without goals or giving up goals that no longer reflected who they were, or because they realised that they reflected the expectations of others. Many of us were re-evaluating what was important to us, making changes to our lives to reflect our changed values and were as yet unsure of the path ahead.

    Naz described the process of setting small steps towards achieving our outcome, for example, doing small things to live well and to enjoy our moments. It can feel as though cancer robs us of many of the opportunities we had prior to being diagnosed with breast cancer, but boundaries are relative and we can still set ambitions within our limits. We may even find we exceed them! Re-prioritising is hard and if we can't achieve our goals, we feel disappointed, but our joy and reward from what we can do is limitless.

....if we can set small, attainable goals, which we then achieve, we can increase our resilience."

Naz told us that paradoxically, small goals are the ones that are the often the most unattainable.
  
     Naz explained that the feedback from attaining smaller goals leads to greater connectivity between those regions in the brain that play a huge role in something called 'reward processing' - generating satisfaction, a sense of achievement and accomplishment - which in turn improves our well-being. As smaller goals are easier to attain, and can be planned more frequently, the accumulative effect on the brain is a booster, and reinforcer, for more positive reinforcement leading to greater reward being processed by the brain. This, in turn makes us feel better about ourselves.

    Simply put, if we can set small, attainable goals, which we then achieve, we can increase our resilience.

Our Hopes and Dreams

 

    

                                

My dream. My passion. My hope. They are you. We stand together.

Hope gives us the gift of enjoying life

    During active treatment (surgery, chemotherapy, radiotherapy) many of us felt our goals may be frozen as we lurch from one hospital appointment to another. Our focus is on getting through it one day at a time. We shared how our plans go on hold, we pause, develop new goals, redefined goals. We must change and practice flexibility, prioritising and self-care. However, we realised that women's experiences do not fall into neat categories - 'primary'; 'post-treatment'; 'secondary'; 'recurrence' but are much more complex and varied.

    A diagnosis of breast cancer can be shattering and we find we are both a different person and yet still in essence the same. Some of us emerge from active treatment treatment with the expectation that our dreams and hopes can be addressed, only to find that we need to reconcile with our experiences and come to terms with them. Women with secondary breast cancer spoke about how hard it felt to know that treatment and all that goes with it will never end for them but said their hopes and dreams are still there. Whatever our different experiences as women with a diagnosis of breast cancer, there was a sense that we had in common a greater awareness of what it means to be alive, we can become much closer to our values, we experience a clarity and a determination to tune into what makes us happy rather than worrying about what others expect of us.

    Some of us slow down, choosing a quieter life, perhaps changing jobs or moving house or give up work (not always through choice but because their health prevents them from working). Many change the focus of their goals from themselves to others - we want to see children or grandchildren grow up and settle and achieve their ambitions. Others speed up and feel an energy to make the most of every moment, perhaps visiting far away places or undertaking physical challenges, taking up new hobbies, becoming creative, learning new things.

    We heard about women giving up regular jobs to earn a living creating things, to become a counsellor, to take up alternative therapies, to retire early. Others remain as career focused as before, and, like Naz experience a renewed determination to achieve their goals. Others choose to balance their ambitions with studying or part-time work. Some return to the same job but view it differently, perhaps choosing not to let things worry them and finding they can relax more easily when not at work. If self-employed we might decide to keep our business small rather than push for expansion. There was a general desire to minimise stress and to practise self-compassion.

    Some of us are aiming for a particular anniversary - a special birthday, a child coming of age, a wedding anniversary. Other women find themselves not wanting to set long term goals, choosing instead to live more in the present, although some admitted to finding this challenging. What really matters is time, time to love and be loved and of course we would all like to grow old.

    Naz has talked about her own dreams... her ambitions....: The BRIC Centre, our private network, making a difference with her research, spreading the word all over the world. She speaks for all of us who have had a breast cancer diagnosis and her goal to bring women with primary and secondary breast cancer together.


    Our members described the sensation of needing to “dig deep” to be able to be hopeful for the future. Many of our members told us that it was difficult to hope for long term goals or were worried that by doing so, they would be faced with disappointment. It was almost universal that it was easier to feel hopeful about short term expectations and by living in the moment. Sometimes it was difficult to be hopeful, especially when faced with overwhelming events and mental health difficulties. Naz explained in her introduction that we may need a time of hopelessness to find hope and resilience - one of our members called this as seeing “glimmers of light to sparkle hope”.

    Some of our members have experienced taking part in a “Hope Course” through their local cancer service or through a charity - the majority of our members found these unhelpful - they felt that hope is such a personal experience which cannot be taught. Some felt that terminology around hope was difficult. One member heard the term “no-hoper” being used to describe a woman who had died from her cancer. Acronyms such as “HOPE - having only positive experiences” were disliked. More helpful were the kind word and support from family and friends, including those in private groups such as BRiC.

    What do we hope for? We hope that our future will be OK and that we stay well. We hope our cancer will not return or that it will not worsen. We hope our families and friends will stay with us when things are hard. We hope for new drugs and new breakthroughs for treatments. We hope our next scan will be good. We hope to see our children achieve their milestones and we hope to see all the seasons again.

The Language Surrounding Cancer

 

In the 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 BRiC, we have 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. 

*We'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.