Anxiety - The See-Saw of Fear

‘None of us will ever forget the earth-shattering day when we were told ‘it’s cancer’. From that day, things change’.

 

In women who have all been diagnosed with breast cancer you might expect our experience of anxiety to be high. Discussions on anxiety in BRiC loom high. We have all experienced anxiety in some form or another, either throughout our lives or since our diagnosis. Anxiety around recurrence (for those with a primary diagnosis) and progression (for those with a secondary diagnosis) is never far away. Every pain we experience, every test, scan, routine mammogram, produces anxiety. A cancer diagnosis may trigger anxiety caused by earlier trauma, which we may previously have suppressed or coped with well.

 

    What does anxiety feel like? A racing heart, sweating, butterflies, a fuddled head, an uncomfortable adrenalin rush. Gut churns, tummy knots, heart palpitations. A feeling of hot and cold that washes over us from head to belly and back again. Some of us have an urgent need for the loo, others are physically sick. Panic attacks can be the result of anxiety and often occur with no warning, in the most ordinary of situations. They can be frightening and debilitating, and the anxiety grows and fuels the fear, so that we don’t want to go out in case it happens again. Anxiety can make a huge dent in our self-confidence, and can affect our work, our relationships, our social life.

 

    Anxiety can also be exhausting, sapping our energy. It can manifest as rashes, rosacea, fire on the skin, tinnitus, headaches and other aches and pains, fatigue, procrastination and insomnia. We may feel faint or pass out. We may feel emotional, on edge, tearful. We may feel we are doing fine and then our symptoms creep up on us or suddenly appear. Feeling very unwell due to anxiety may be connected to our bodies letting us down at various times in our lives, not least our cancer diagnosis. Many of us are aware of a low-level undercurrent of anxiety which we ignore, we are good at coping, just getting on with it, but at what cost to our mental health? Some of us grew up in a family where expressing our emotions was frowned on, and this can affect how we cope in our adult lives. Severe anxiety can make us feel we are alive but not living. Ongoing severe anxiety can cause physical illness including weight loss.

 

    Some of us mentioned that our anxiety hits us at inappropriate times, perhaps while we are at work, and we have learnt to shut it away. However it will appear later, and sometimes will be stronger after a period of denial. We may find we have flashbacks to our treatment, and our fear is always at the back of our minds. Anxiety makes many of us feel weak and helpless, and it’s hard to remember that our anxiety is not our fault. Some of us feel most anxious when we wake in the morning, and this might be very early, or late at night preventing sleep. We find it hard to summon up defences at this time of day. It takes a strong resolve and huge self-compassion to face the day with courage when we start it this way.

 

    Many of us take on the worries of others as well as our own, particularly within our families. We find ourselves experiencing anxiety about their problems. We may also find that our loved ones have no patience with our anxiety and don’t understand. ‘What became apparent was that people understood the impact of cancer more than they did anxiety’. Many of us worry about how our loved ones will cope without us, particularly pertinent for our women with secondary breast cancer. Focusing on the present can help us to get past this. Practising control over the things we can control and accepting and letting go of what we cannot is a useful mantra.

 

    Lots of us have come to terms with the fact that we are natural worriers, and a light-bulb moment may be when we accept that it’s ok to worry. This recognition can help us to take steps to alleviate our anxiety. If we acknowledge how we are feeling, we can then ask for help. Groups like ours can really help us to realise we are not alone.

 

    Naz explains the way the brain adapts to persistent fear, preparing the body to expect danger and meet it, triggering the primitive flight or fight response - to run, to fight, or perhaps freeze. We are, by default, vigilant. She used the image of a see-saw to explain the way the cognitive and emotional brain systems interact. At one end of the see-saw, in an anxious state, the emotional system dominates and weighs us down. At the other end of the see-saw, the cognitive system lets go to prevent becoming overwhelmed. Resilience can strengthen the cognitive system to gain weight as it moves towards calm and rational thought, allowing the see-saw to swing back into balance. This is not about numbing, controlling, or avoiding, but a robustness which promotes neural plasticity and supports communication between the cognitive and the emotional brain systems. Resilience helps us to bring flexibility to the see-saw. It is a key adaptive factor in coping, indeed to survival, and Naz’s research is highlighting the possibility of building a ‘cognitive vaccine’ to protect against the damaging effects of anxiety.

 

Here is ‘the science bit’, copied verbatim from Naz’s introduction. It adds illuminating background to the discussion and deserves to be read in full by a wider audience as it was so helpful to our members.

 

Understanding anxiety and how to manage it. (Naz)

 

According to the World Health Organisation, anxiety and depression are the biggest disabilities worldwide. In an era where we are washed with therapeutic techniques, and all kinds of ‘tips’ this is highly worrying. Personally, I think it is largely because we haven’t taken time to understand the nature of our anxieties, why they are there and how they affect us.

 

    The first book I ever read on ‘Anxiety’ was: “Understanding Stress and Anxiety” by the late Charles Spielberger (the father of Anxiety Research) whom I was fortunate to meet and receive the Young Scientist and Early Career Award from, back in the early 2000s from the International Society for Research on Stress and Anxiety. I was 13 when I read his book, the first of dozens I ended up reading, and it was then I knew that I wanted to do a PhD on Anxiety. I have since spent over 25 years studying Anxiety, its origins and nature, its neural underpinnings, and its behavioural and physiological manifestations.

 

    Anxiety is a prolonged response to acute as well as chronic stress, some say its “prolonged fear”. It is fuelled with uncertainty and a main feature of it is worry. Many physiological responses come with anxiety and these can persist even when the source of stress isn’t there, this is mainly because the brain processes threat really quickly outside of our conscious awareness. So the experience of anxiety can be triggered unconsciously. Anxiety is not something we can easily control or put a lid on. It is the result of an interaction between the stressors we experience, our coping strategies (e.g. avoidance of anxiety can backfire and intensify it), as well as the level of control we have over the situation and the stressors we experience. It is also a result of a long learning process of how we have responded to stressors in the past. In large amounts, anxiety can be crippling, and prolonged anxiety is known to lead to depression.

    Counter-intuitively, anxiety is a protective response, its origins are there to protect. So, some anxiety is good, it's beneficial, it can protect us from danger, fear can motivate us. It is saying that we must do something about the situation. The brain responds to fear really quickly because of its survival value, it has a preparedness to process danger.

 

    When we have little control over what we CAN DO about the situation we are in, anxiety exacerbates, the intolerance of uncertainty fuels anxiety, and we can experience unnecessary escalating levels of anxiety. When we are diagnosed with a life threatening disease it is normal to feel anxiety, and we live in the anticipation of the ‘what ifs’, when we have little control over the outcome. Research shows that breast cancer increases risk of anxiety significantly. A balance needs to be in place to regulate our anxieties so that we can experience them in moderation. Scananxiety is a big one, then there is the wait for the results, there can be relief or increased apprehension depending on the results and I’m sure you can come up with more examples.

 

    If, like me, we have a predisposition to experience anxiety (either through traumatic experiences of the past or the like) then we are likely to experience anxiety provoking situations with greater intensity. Generalised anxiety (or free floating) can at times be debilitating. People who have a tendency to worry, feel anxious without being able to pin down the exact source of anxiety – this is much harder to manage.

 

    Balancing anxiety is a tricky act. There are lots of therapies and tools we can use to our advantage to relax, in essence what we are doing is targeting the symptoms, not the cause as the cause is hard to tackle and often a mixture of things. There is no right or wrong way but a good behavioural approach can help. Consistency in how we tackle anxiety, acknowledge it, take time to understand it and how it is affecting us is important. Dampening it or avoiding it is not helpful, because it has emerged for a reason! Mindfulness meditation if done systematically can lower anxiety, so can cognitive training as we are building our cognitive systems to regulate our emotional brain systems. In fact research shows that both cognitive training and mindfulness-based meditation interventions independently can lower anxiety related symptoms longer term.

 

    If we feel anxious, we do not need to beat ourselves up for not being able to cope, far from it, it is when we need to love ourselves more than ever, be kind to ourselves and each other and not judge. We can be broken, we can be hurt, we may not be able to access our resources and we may be lacking in resources. It is not our fault. It is ABSOLUTELY NOT OUR FAULT.

How to Cope with Anxiety

Our strategies and coping mechanisms were wide ranging and include the mindfulness and meditation. We talk to counsellors, therapists, friends. We learn CBT techniques and undertake inner child healing. We receive and practice Reiki. We practice yoga, focus on our breathing, visualise and take ourselves to a safe space, finding fond memories of when we were happy and safe calming. Aromatherapy helps to relax us. We go outside and find nature and fresh air revives us. Tapping is a useful tool for some. Reminding ourselves that anxiety is an ongoing process is also useful, it comes and goes. In mindfulness terms, this too shall pass. Although of course it may also return another day. Medication also has a place in helping us to feel better.

 

    Many have had ongoing therapy to address trauma, which can be very helpful. We may learn that avoidance fuels our anxiety rather than calms it, and we can try to face our fears by asking ourselves: what’s the worst that can happen? Life can prove to us that what we worry about often does not come to pass. However, anxiety can still dominate even after we have learned about our triggers and after we have practised alleviating strategies. Our subconscious brain brings us more anxiety, and we may have no idea where it’s coming from.

 

    Some of us have tackled anxiety by challenging ourselves, by facing our fears. However when we do this we may find that although we get through the activity that makes us anxious, it doesn’t make it easier the next time we do it. This means that some of us see avoidance as a perfectly valid strategy in some situations. We seek to understand our anxiety and when it arrives one day without warning, for no apparent reason, we are frustrated not knowing what’s going on. On another day we feel ok and function without undue anxiety. Anxiety does not seem to present itself consistently or logically and this can make us feel stupid and out of control.

 

    Practising self-compassion and self-kindness can be very useful with anxiety. It helps us to realise we are not weak or useless, our anxiety is not who we are. Perhaps we must try to live alongside our anxiety, even befriend our anxiety, rather than searching for a fix. We can learn tools and techniques, we can work out our own life lessons through counselling or experience. Fighting against our anxiety is common, we start to think there is something wrong with us, we may have been told this in our past. We want to make ourselves ‘right’ and we don’t know how to do this, despite our learning, and so we end up more anxious. In these situations, recognising when we are being hard on ourselves is key.

 

    In BRiC we have shared our coping strategies: mindfulness and meditation, deep breathing, practising realigning thinking by keeping an emotional diary, simplifying our life by reducing responsibilities where possible, taking time for ourselves and practising self-compassion and self-soothing. Hobbies, exercising and being outdoors and in nature can also help. One suggestion was to focus the attention on something else – drinking a cool glass of water through a straw with closed eyes. Another was to embrace our anxiety as one would comfort a fretful child.

 

    A question was whether breast cancer had caused or heightened our anxiety because we face our mortality or whether, because it leads to a change in our values, an increased sense of what’s important to us in our lives. Letting go of things that are no longer important and discovering who are in the aftermath brings another set of challenges.

 

    We are changed by cancer. We can never ‘get over’ it. We can learn to live alongside it in some sort of harmony, with the see-saw constantly moving, but gently tilting back towards equilibrium as we practice self-care.

Feeling Depressed

Depression. It's a word that has come into our everyday language, sometimes in ways which are not so helpful. We all feel sad, we all feel low, but when someone experiences depression, these feelings persist for weeks and months. Depression is not a sign of weakness. It's not something someone can simply "snap out of."

 

    Clinical depression affects people in different ways and takes many forms, including feeling sad and unable to cope with everyday life, feelings of pointlessness, desperation and in severe depression, suicidal thoughts. It can cause physical symptoms like fatigue, pain, insomnia and loss of appetite too. Depression can be a lifelong problem for some, with episodes being triggered by stressful life events and experiences which are traumatic - like a diagnosis of breast cancer. Depression can also come in cycles, seemingly without any particular trigger.

 

    We've poured our hearts out, women with a primary breast cancer diagnosis and women with secondary breast cancer, sharing some of our personal experiences of depression. We described dark days with no zest for life, a weariness that took away our motivation to carry on.

 

    Many of us have described becoming depressed once active treatment had ended; the hospital appointments cease and, with them, the structure that kept us going. Everyone around us expects us to be back to our old selves and it’s time to go back to work or other routines. However, we feel shaken and lost, our confidence shattered by the whole trauma of invasive surgery and treatment as well as continuing to deal with longer term physical side effects. We may wish to protect those around us and pretend we are back to normal, or we may be made to feel we should have ‘moved on’ once the primary treatment has ceased. It’s easy to see how depression can either creep up on us, or hit suddenly as the enormity of what we've just been through hits home.

 

    The debilitating effects of hormonal treatments taken by so many women, or, early menopause symptoms, increase the psychological demands we face, causing us to experience mood swings and fatigue at a time when we are already psychologically vulnerable.

 

    Women with secondary breast cancer face unique psychological challenges - living with the knowledge that we cannot be cured, our treatment is ongoing and our regular scans and checks cause great anxiety as the quest to halt progression continues. We cherish every day, but we can also experience bouts of deep depression as the relentless treatment regime punishes our bodies and minds.

 

    Depression can make us feel worthless, it can strip us of all joy in living and make it difficult to accomplish everyday tasks. Fortunately help is available. Many of us shared that we had found talking therapies such as counselling, psychotherapy, Cognitive Behavioural Therapy and support groups helpful. Exercise - in many forms - can also be helpful. Anti-depressants and sleeping tablets have their place too.

 

    Depression can mean we have to rest and take time away from work and possibly family leading to isolation and contributing to feelings of hopelessness. Some of us spoke about times in our lives when we felt we could no longer carry on. We also described how something or someone prompted us to reach out for help, to seek support from professionals, family and friends to get better.

 

    Naz explains that depression presents an evolutionary paradox to scientists. Is depression a cry for help? Is it an attempt to conserve resources? Does it represent an exhausted brain? Is it a consequence of chronic anxiety? Is it a state of no hope, helplessness, and repeated failure? There is no future to look forward to. Is it a chemical imbalance?

 

    Depression, Naz told us, is all of these things, but mostly it signals an exhausted brain, a brain so full of fear, anxiety and negative and traumatic thoughts that no room remains for cognitive thinking and common sense is replaced by irrational hopelessness. The neural pathways involved in goal driven behaviour are no longer working efficiently, and there is a reason for this. They can’t.

 

 How Do We Cope?

For many of us, a first encounter with serious ill health or depression taught us how to look after ourselves. We learn to spot signs of sinking into depression and seek help to prevent it before it gets a stronghold. We learn to practice extreme self-care, and to reach out to each other for support.

 

    However desolate depression makes us feel, there is always a way back up. Naz told us how we may learn to thrive following depression, as our severely depleted brain resources slowly but surely return to normal. We can, with the help of others, bring ourselves back from the brink by training our brains to respond differently, by practicing cognitive focus. 

There may come a time when we can use our depression to our advantage, beating it down with determination and our will, our desire to overcome adversity and thrive again.

‘Let it Go’: Overthinking and How to Overcome It

 

Our experiences of overthinking the past (also known as rumination) and our fears about the future (also known as worry) is much of a topic for discussion in BRiC. 

 

    We have shared how overthinking can sometimes get the better of us, that we wake up at weird times in the night and get stuck in these repetitive negative cycles of thinking, how it can interfere with our sleep. Some of us have described its effect as paralysing, holding us captive, how it can lead us to self-blame and grieve over our actions; make us feel low in self-esteem and confidence.

 

    Some of us have thought we had a predisposition to ruminate about the past, and/or worry about the future, because of our childhood experiences, and learning to feel guilty and self-blame. Having breast cancer also increases our tendency to overthink. These tendencies are even more alive in situations where we feel alone and are in self-isolation. Yes, we have a lot of time to think and overthink, fear the future, and detail what we could have, or should have, done better.

 

    Research shows that overthinking the past is one of the biggest predictors of later depression, and worry is closely tied with anxiety. Interestingly, rumination discriminates, it is more prevalent in women than men.

 

    A lot of research shows that when we get stuck in cycles of negative thinking we are using up quite a bit of our cognitive resources that would have otherwise been used more efficiently getting stuff done. So, overthinking can slow the brain down, making us inefficient and sluggish. While rumination and worry can be natural responses of the brain, when they get excessive they become interfering, and circumstances which breed uncertainty and lack of control over our immediate situations can enhance our tendency to worry and ruminate. The brain is trying to make sense of what is happening.

 

Managing Overthinking

 

We’ve discussed that if we acknowledge it, give it some space, then it is less likely to dominate us. While this may sound counter-intuitive, as we would immediately want to fight it and push it aside, it can actually make our thoughts less threatening. Some of us have developed a laid back approach, others have found meditation and fresh air helpful. Structured breathing has also helped. Finding resources to be grateful and count blessings were also mentioned as useful strategies.

 

    Our brain has an amazing capacity to learn and to adapt because its goal is to help us survive in the most effective manner. When our brains respond, with fear, with overthinking, with sadness and so forth, they are signalling emotions that are critical to our experiences, to our being as humans. We want to be able to embrace them and listen to them, perhaps let go of their controlling forces because then they may not be so loud once they are heard, they may not be so threatening when they are embraced, and we may not need to overthink, when we have accepted.

Uncertainty and Managing It

 

‘Confronting, accepting, even embracing fear, according to research, can lower uncertainty. ‘

A key flash point for uncertainty is once active treatment for primary cancer is finished and we are no longer attending regular appointments which give us momentum in attacking our cancer. We have time to reflect and to worry. 

    The enormity of what we’ve experienced sinks in and we wonder what we can do to prevent recurrence or spread. Cancer does not discriminate, it pounces on those who run marathons and eat their five a day just as regularly as it seeks out those who are not as healthy in their diet or as active. 

    We realise that our future is outside our control, and this brings feelings of guilt, why me? And what if? If we are living with secondary cancer, as many of our members are, then stability versus progression becomes our uncertainty.

    One of the most uncertain times in a breast cancer diagnosis is when waiting for test results. We have all experienced the agony of this, and a few days or weeks can seem a very long time. Once we know, the uncertainty of what’s next reduces and we can get on with whatever treatment our medical teams recommend to us. Some of us like to take control by questioning and researching our treatment plans, seeking the very best way forward for our particular situation.

 

How can we minimise the effect of uncertainty on our mental wellbeing? 

For some, distraction is the key, keeping busy, with work or other activities. The downside of this is that relaxation may become difficult as intrusive thoughts ruin any attempt at taking a break. For others, peaceful reflection, mindfulness and living in the moment helps. Walking in nature and creative hobbies are absorbing popular pastimes. 

    To realise that everything is ok in this moment, right now, works for some, but for others the uncertainty simply overwhelms the present moment. 

    Talking about our fears and sharing experiences helps many of us. Confronting, accepting, even embracing fear, according to research, can lower uncertainty. The brain is so powerful, and the more we allow our vulnerability in and think of it as an opportunity rather than a threat, the more we can shield ourselves from the anxiety inducing effects of uncertainty.

    For those of us prone to anxiety, the added uncertainty of a breast cancer diagnosis has the potential to be be crippling, but many of us take a pragmatic approach and ‘just get on with it’, not allowing fears related to cancer to add any extra weight. Some of us feel angry and bewildered, and increased anxiety can lead to depression. If we can turn these strong emotions to our advantage we can find a strength and determination to change our lives for the better.

    Self-care is an aspect that we embrace in our group, and members report that this attention to our own needs and wants is key to our wellbeing. 

    Some of us make a lifestyle change following cancer, as this can help us to feel that we are doing the best we can to look after ourselves. We might eat healthier, exercise more. Some of us throw ourselves into life with renewed zest, with a feeling that we want to make the most of every moment. Some of us have the urge to give back to life, and take on charity projects or volunteer. Some of us seek out help from professionals to improve wellbeing, this could be a counsellor or a cancer support group or course. 

    Others talk to friends (although many of us find we don’t get adequate support from those who have not had cancer, and we often stay quiet with family as we want to protect them from the worry) and spend lots of time with loved ones, and still others prefer lots of alone time and make time to relish their solitude.

Calming Strategies for Anxiety

 

‘I took a deep breath and listened to the old brag of my heart. I am, I am, I am.’ Sylvia Plath

Our discussions have focused on strategies that our members have found useful to calm themselves, both in times of stress and generally in the day-to-day. We have confirmed that anxiety may be a major problem following a breast cancer diagnosis.

    Naz explained what happens to our brains when we take a moment, sit down and breathe. Our neural networks are highly active when we are busy doing things, occupied with thinking, remembering, attention, decision making and so on. When we stop and ‘do nothing’ our brain is just as active, but it’s our default mode network (DMN) that takes over in this state. 

    Its job is to make sense of our experiences, to process what has happened and what it has learned. This is essential for our survival. If our DMN didn’t do this for us, reaching homeostasis, we would be continually overwhelmed. It makes sense that if we encourage our DMN to engage by being still, then we will cope better when we are busy. Meditative breathing induces calm into the body and mind via a two way exchange of relaxation signals. Practicing being calm means we’re better able to calm ourselves at will.

    For many, seeking a calm state is part of a general desire to look after ourselves. Calming activities that we’ve shared include movement, activities such as walking, running, yoga, Pilates, cleaning and gardening. 

    For those too unwell to move much, then simply getting outside into the fresh air helps. Activities such as reading, watching a film, listening to music – all can be both distracting and calming. 

    Occupying the brain whilst resting the body is an essential part of healing. Knitting, crochet, doing jigsaws and colouring are absorbing soothing activities that many women find helpful. Visualisation is seen as a useful tool, particularly as a distraction during treatments such as scans. Many enjoy being in nature and imagining a beautiful place can be very relaxing.

    Specific calming exercises recommended by our members include breathing exercises of various kinds (e.g. alternate nostril breathing, box breathing, the three minute breathing space) and some have tried sipping ice old water very slowly which works as a mindful activity. Grounding exercises include things like rubbing our thumbs together to feel the lines, and stopping what we are doing to observe and be mindful of our bodies and our surroundings. Some women find their faith helpful in keeping them calm.

    Not everyone finds focusing on the breath helpful. One of the problems with classic meditation is that focusing on breathing leaves the sub-conscious brain free to roam. Following trauma such as breast cancer, this may interrupt our attempts at becoming calm by presenting intrusive troubling thoughts. 

    For some women this makes them feel overwhelmingly sad and leads to overthinking and dark 'worst case scenario' thoughts. For this reason some women may choose distracting relaxation over sitting in silence. Playing an instrument, singing and listening to music provide pleasure, and require concentration which focuses the mind and relaxes it too. Some women like calming neutral music (it may not be a good idea to play songs that are associated with memories) but others prefer something heavy and loud which they find dispels their worries much better.

    Taking part in activities where we are out and about meeting others can help us to feel more confident, which can assist in alleviating anxiety. Several of us sing in a choir and many belong to groups to practise their hobbies and suggested classes or workshops in improv comedy and laughter yoga.

    An exercise in gratitude was mentioned which many women find helpful: listing three things each day we are grateful for, or perhaps keeping a gratitude diary. A good cry is a great stress reliever too.

 

Menopause: Our Experiences and Coping

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’d experienced a natural menopause prior to diagnosis. What was agreed on was 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 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 effects, or how to manage them. We were to research the effects of treatment induced menopause ourselves and seek help on how best to manage the symptoms which are at most times debilitating. There were very few who reassuringly had more manageable symptoms. Many of us were grateful to support groups like BRiC who provided some information on how to address the symptoms.

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

    For many of us such symptoms persist for years post active treatment mainly sustained through endocrine therapies such as Tamoxifen, Anastrozole and Letrozole. The impact of such 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 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 much 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 really 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, most 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 fact is that there are no simple solutions for us.

    No one symptom of menopause affects us in isolation, the symptoms are very much linked providing a difficult environment to function healthily at best of times. Our emotional, sexual and cognitive health are all interlinked as our bodies work in harmony. A collective threat to our basic functioning is damaging and our members' experiences clearly demonstrates the emotional and physical pain they endure. This calls for an urgent need for measures to systematically address menopausal effects, longer term. A link suggested by one of our admins: Dr Caroline Humber, provides some useful information as a starting point, but more needs to be done: https://flipbooks.leedsth.nhs.uk/LN001794.pdf

What advice would you give to someone newly diagnosed with breast cancer? BRiC's Collective Voice

What advice would you give to someone newly diagnosed with breast cancer?

When we are diagnosed we go through a trauma and our brains are emotionally overwhelmed. We asked our members what would have helped us at this emotional time when we are feeling vulnerable, tearful, and scared.

For some of us, we would have liked to know “you will get through this”, that the treatment is “doable” but that the treatment wasn’t something we could “sail through”. And that those who offer toxic positivity “Stay strong, you’ll beat this” may drive us crackers. Some definitely learnt the hard way, trying to be “super woman” and “push through” while caring for everyone else as they always did, and would now offer advice of “take it one day at a time” and, a recurring theme, “listen to your body”, alongside encouraging women to take all the help offered by friends and family. A few members said “knowledge is power” which related to us gleaning as much information as we could about our disease and its treatment. However we acknowledged that it was easy to be overwhelmed with too much information and that we can all handle it at slightly different rates. Some of us did feel we had not been given enough information at the start of our treatment plan, that knowing the long term side effects more thoroughly could well have affected our treatment choice. This also ties in with, as one member put it, “be firm with your medical team, you are the expert on YOU”. Ask for copies of your medical reports if you are like me and need to know everything” And take time to consider choices you are given about your treatment, take a 15 minute walk round the car park if you need to in order to help clear your mind. Also, celebrate the wins: “if you get out of bed and stagger outside for a walk on some days that’s bloody amazing”.

From an emotional level, we needed to be reminded to look after our stress levels, that “this too will pass” even if it takes a while to feel emotionally stronger. We should give our emotions the attention they deserve, that this is “your story”, that it was ok to not be super strong about this, that it was wise and even healthy to acknowledge our feelings. Some of us felt that some warning about the emotional rollercoaster that may happen afterwards would have been good, that we may push through emotionally to get through the treatment, but that we may crash down when it has finished, that even though our friends and family think it is all over when treatment has finished, it isn’t over for us. And that we may need to seek help at this point and acknowledge our struggle, and ask for support from a professional, many of us didn’t know this was available.

For self care, we needed to know how to administer some self care! That breast cancer is a disease, not a cold. Members suggested treating ourselves with kindness and compassion, and also seeking out support groups such as ours, (Building Resilience In Breast Cancer private group or BRiC) to find women who would just “get it” and could provide some answers. One member said groups like BRiC gave her hope as there are members here who talk about being 5, 10 or 15 years post diagnosis and that helps us see beyond the immediate danger we feel. One member offered some practical self care advice that she would have liked: “You will laugh again. Eat well. Rest. Treat yourself. Take time in nature. Put on your best clothes and makeup - it will make you feel good” Another member said: “It’s ok to feel everything you feel, don’t bottle it up. This is crap, but if you stay open, your life will open up and change in ways that you would never have thought possible”.