My 'New Normal'

 

"The "new normal" also means facing a new reality. One which we didn't choose."

What is the "new normal" after a diagnosis of primary or secondary breast cancer?

This has been discussed to length in BRiC's support network.

    People tend to speak of the "new normal" in relation to the process of adjusting to life after a cancer diagnosis, often when active treatment has finished, when the physical demands on us have receded somewhat, allowing us time to reflect and to "find our new normal."

    In our experience, the phrase "new normal" is actually an ambiguous term used to convey somewhat contradictory ideas - firstly, a fresh way of being, suggesting the idea of a new start, and secondly, the process of adjustment to a reduced or more limited way of being and learning how to manage the different roles that make up our identities.

    Our discussions, which have included women with primary and secondary breast cancer, highlighted that one aspect of our "new normal" meant living according to our changed values, changed health, changed energy, perhaps with a new appreciation for what was important to us, and was coloured by gratitude and opportunity. It was idealistic. It was fruitful.

    The kinds of things we might hear or say to ourselves from this perspective are - "You must really appreciate your life now." "Go and be happy." "You have a second chance." "Make the most of your life."
However, this is just one part of how we feel. Alongside our desire to make the most of our life and explore new opportunities, we are also often dealing with ongoing side-effects, and, anxiety about recurrence or progression of disease. Some of us were also dealing with particularly challenging physical and psychological side-effects as a result of treatment, or secondary breast cancer.

    These different factors meant our actual experiences of "normal" were a bit different. Some of us felt we had lost sight of what "normal" was any more. Others of us experienced a gap between what we expected or hoped for ourselves, and our new reality. Some of us were striving to return to previous ways of being, such as resuming careers, whilst others had been forced to make significant changes and the "new normal" meant a new home, job or relationship.

    Naz explained that psychologically, the new normal is a hard process of establishment, to try to reach some kind of stability that is inevitably still evolving through time. We have changed, yes, but the changes are not a means to an end and are ongoing and evolving.The "new normal" is not static but is a dynamic process and at times we can feel at the grip of forces outside our control.

    The "new normal" comes with gratitude. We have insights and a belief that we can get the most out of every day. It can bring opportunities that only we can appreciate. Ones that make sense to us.

    The "new normal" also means facing a new reality. One which we didn't choose. It brings limitations that beg us to dig deeper, either to do the things we once took for granted and are now a struggle, or, to make changes so that we can continue to function meaningfully in our our lives. We have to learn how to make things work for us within the changed frameworks we have.

Are we more challenged?

    Yes we are. We face challenges that are tough to handle. Challenges that come with acceptance of our limitations and in tackling them. We continue nevertheless.

    We were not sure how to define our new normal. We decided we would not call it "normal" as it's unpredictable, a challenging normal and lacks stability. We thought one of the most appealing aspects about our "new normal" were our opportunities to challenge and change, for the better, and to recognise that we are ever changing.

Who Am I Now? A Poem

 

A beautiful poem by our former deputy head Anita Traynor.

"I stop, cry, look at the sky...'
Who am I now, after breast cancer?
I am thankful to be here
I am focused on what I want to achieve
I am lucky despite everything
I am stronger than I realised
I take nothing for granted
I find new challenges
I am determined to enjoy my leisure time
I am angry, fatigued, resentful
I am fuzzy, foggy
I am larger, damaged
I am my treatment and it is all consuming and I cannot see past it
I am lost
I live in fear
I am also fearless in some respects and feel as fragile as a newborn baby in others
I lose my breath
I am vulnerable and I have to disguise my vulnerability
I am a reduced version of myself
I am a master of hiding my true self
I am not sure what I am or what I'm for, the roles I held are filled
I try and do nice things for myself
I have increased self worth
I have permission to put myself first
I appreciate nature
I enjoy simple things
I am humble, compassionate
I am making precious memories with my family
I am no longer afraid to say what I feel
I have an enhanced understanding of pain, suffering and fear
I seek order and control
I like to say I am resilient
I listen to my body
I accept my limits
I know it's ok to cry
I am the same at the core in terms of beliefs and values
I don't push myself to do things I don't want to do
I have come to some sort of acceptance
I don't worry about tomorrow, it isn't worth my energy
I just try to live in the moment
I live, I laugh, I stand sure
I stop, cry, look at the sky, feel my breath. Is that me?
I am still working out who I am
I am under construction, a work in progress
I am me, the only one I've got."

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.