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”.

Things that get us excited and put breast cancer on the back burner: BRiC's Collective Voice

A recent Sunday discussion of ours focused on “Some of the things that get us excited and put breast cancer on the back burner. Have you found something that reignites your joie de vivre?”

Naz started off by saying that she has used work as a distraction to her breast cancer, but that writing grants, publishing papers and supporting her students mainly gives her a “sense of happiness”

Other members could relate to Naz on the issue of work, it distracts, gives them some normality, and by stretching themselves, gives them a sense of accomplishment too. Also, “being around my colleagues was very helpful to me, they were great”. One member is a tattooist, and, once she was allowed to work again post covid restrictions, has found a real buzz about her work, enjoying the creative process and doing what she loves.

A long term project has also helped one member, a project to convert a horsebox into accommodation. The project will allow her and her husband to travel, and afford them adventures, and make memories. This “happy project” gives a sense of accomplishment too, with a long term goal.

Creativity has been a great go-to for many of us, we have taken up art, written poetry, made jewelry, miniature flowers and renovated dolls houses. Activities such as knitting or crochet have proven links with mindfulness and improving depression so it is no surprise that this sort of creative process is something we reach for in various guises. Cancer has helped us push the boundaries of our abilities, and encouraged us to experiment and learn different techniques and skills - given one member a “self confidence I never had before”. We feel that sense of accomplishment again, and are surprised and pleased by it as many of these activities were initially taken up to distract us from our dark thoughts when we were on active treatment. We have found we want to carry on with them because of the joy they give us, in the process and the end result.

Being outside in nature was another common theme for us, how being outside helps us still our minds, looking at the space around us, the countryside, the colours, the expanse of space. Nature, animals, the night sky, camping and being with friends around an open fire makes us happy, helps us feel calm and chases away anxiety while we are in the moment. It allows time to reflect and get motivated by our own thoughts and theories.

We exercise too, if we are able to within our physical limitations: yoga, horse riding, dressage, running, long hikes, exercise classes at the gym. Setting an exercise goal, and hitting it gives us a natural endorphin high, and keeps us challenging ourselves. Or just having a dance to our favourite playlist!

For some members, they are still searching for something that “clicks”. Reading a good book can provide escapism, but if our minds are wandering then we may not remember what we read. Sewing and yoga can give some temporary distraction but may not fully “excite or engage”. Our concentration and focus may have gone and anxiety has replaced it, we may struggle to look forward to events that gave us a joie de vivre before cancer, and that can block us from those activities that may have excited us before.

However, we should be mindful of not using whatever gives us joy and excitement to help us avoid thinking about our breast cancer. It is healthier for our minds to not suppress our emotions, but give them the attention they deserve and when they deserve it. We are aware of pushing cancer to one side with the things we enjoy doing, but this can only be temporary and the darkness can return. We have to learn to live with the darkness we may sometimes fear and learn what we can do to excite us, what makes us smile and the world seem a little brighter.

Managing side effects of Endocrine Therapy: BRiC's Collective Voice

 

Is it too much to ask?

A recent Sunday discussion looked at the side effects of endocrine (hormone) therapy for those of our members with hormone positive breast cancer. Drugs such as tamoxifen, zoladex and aromatise inhibitors (such as anastrazol, exemestane, letrozole) are used to prevent recurrence or spread of cancer after a primary diagnosis or as part of ongoing treatment for those who live with secondary breast cancer.

Naz shared a research article published this month in the scientific journal Lancet Oncology which had reviewed the evidence for approaches to manage side effects. The article pointed out that hormone therapy causes a significant impact on quality of life and to adherence to medication. They feel that there should be an aim for breast cancer patients to be returned to pre-cancer quality of life and emotional/social function. Further, it was felt that this could only be achieved by careful management of side effect of anti cancer treatments. Members do not appear to receive much support to achieve this aim, with many being given a prescription for tablets to take for 5 or 10 years and then sent away with no further follow up.

Side effects can substantially affect our quality of life but stopping the medication could have an adverse impact on cancer survival. One article cited in the article found that 16% of pre-menopausal women stopped taking the medication due to side effects. Some of our members felt that side effects made them miserable with impaired quality of life but felt they had no follow up and that some felt their concerns were not taken seriously by medical teams. There seems to be a feeling that we should be grateful to have had our breast cancer treated and that side effects were just part of keeping the cancer away. Some had very helpful GPs but others felt their family doctor did not have the expertise of the oncology team who made the initial prescription.

Many side effects were reported by our members. Some were commonly recognised in breast cancer leaflets - hot flushes, joint pains, sexual dysfunction and reduced bone density. There were many others: vaginal dryness causing pain during intercourse, low mood, cognitive impairment (this often had a significant impact on work and home life), poor quality sleep and thinning of hair, nails and skin. For some, the joint pains were so severe, they struggled to walk.

As always, our members offered advice on what had helped them the most. Clearly there were some pharmaceutical prescriptions given by a doctor but there were also non-pharmaceutical options too. Many found a more holistic approach helpful using mindfulness techniques. Yoga and Pilates were found to ease stiff and painful joints. Exercise was found very helpful at helping lift mood, help reduce the frequency of hot flushes and improve sleep as well as improving fitness. Some members like to run, others to walk, cycle or garden. Others found the use of dietary supplement helpful, although it is important to check with your doctor, pharmacist or specialist nurse to ensure there are no interactions with prescribed treatments.

Pain control was very important for those with muscle and joint pains. For some, simple pain killers such as paracetamol sufficed, for others pain control was much trickier - some had been referred to a rheumatologist and found this helpful. Acupuncture was also used, albeit with varying success. For many, however, they were left to try to manage pain in the absence of an oncology team. Sometimes a change in medication or a short break can make a lot of difference but these opportunities are not available in the absence of follow up support.

Sexual dysfunction was very common, especially after the rapid menopause brought on by breast cancer treatments. Many members felt it hard to talk to medical teams about such a deeply personal issue. Vaginal dryness symptoms can be addressed with a prescribed but other symptoms such as loss of sex drive were much harder to talk about and even harder to find treatment in the absence of an oncology team with access to a psycho-sexual counselling team.

Almost universal amongst our members was the lack of information about benefits of treatment and harm from side effects. This meant that there was little opportunity to discuss in depth how much the treatment would benefit them and at what cost. Without this, there is no informed consent for drugs to be taken for up to 10 years. More than one member described being sent off with no follow up and a box of pills.For those who still had regular oncology follow up, this was felt to be useful and a good opportunity to get help.

Our members know what they want and need to manage their symptoms:

To be heard and believed when we say our symptoms are a struggle for us

Access to ongoing oncology or breast cancer team support and follow up with a point of contact so we can report significant side effects and access treatment options.

Full information about benefits and risks at time of starting hormone therapy (not merely an information leaflet to take away and read)

Better understanding from our employers at the changes in our physical well-being and cognition.

Given everything we have been through and will continue to go through, surely it is not too much to ask for?

Unraveling the emotions behind grief and why do we grieve the loss of people we've never met: BRiC's Collective Voice

In a recent Sunday discussion we talked about grief, particularly about how we grieve for the loss of people we have never met, celebrities and public figures who we don’t know, but whose deaths cause many of us to feel profound grief.

Grief is a complex emotion and affects us all differently, but it is something which we all experience in some way. People often talk of grieving as a process, but it is not a linear path, there are twists, turns, surprises and bumps in the road. As a group of women who have all had a breast cancer diagnosis, we were aware that deaths caused by cancer often touched us the most, perhaps reminding us of our own mortality or causing us to think “that could be me”. One of our members said that once we have had a cancer diagnosis our ability to live a carefree life has been taken away forever; thoughts of death may become an everyday part of our lives. We all know that none of us will live forever, but cancer steals away our peace of mind and may leave us in a constant state of worry for whatever life we have left.

Some of us have been raised to keep their emotions in check, finding expressions of grief unnatural and making the process of grieving more difficult. Cancer deaths often touch us very personally, even if it is the death of a total stranger, it can be hard to explain to others how the death of someone we don’t know affects us so deeply and stops us in our tracks. There were others who felt unaffected by the death of strangers or celebrities; members talked of needing their energy and focus to be on themselves and their loved ones; having a cancer diagnosis is exhausting and sometimes there is just not enough strength in us to think about people we don’t know.

For some the public outpouring of grief often seen when a celebrity dies, is uncomfortable and sits uneasily with them. Occasionally it is the similarity between the deceased and ourselves which causes grief – “he was the same age as me”, “her children are the same age as mine”, “they were married as long as my mum and dad”, “her diagnosis was the same as mine” – all these things can hit home and remind us of our own tenuous grasp on life.

We questioned whether what we feel when a stranger dies is actually grief, or is it empathy; fear; compassion; sadness; anger? Perhaps all of these emotions are part of grief, but we wondered if it is really the same as losing a loved one. Anger was an emotion many of us shared, particularly when we hear the words “died of cancer”, we are acutely aware that cancer is indiscriminate and such a cruel disease. It was interesting that the age of the deceased was pivotal for some members, feeling less sadness for those dying at an old age, but grieving deeply for those who die young; however this wasn’t the case for everyone, some members felt all deaths were equally distressing no matter the age of the person who dies.

Sadness for those left behind was an overarching theme, we acknowledged that part of grief is facing the future without someone. The sight of someone left alone after a lifetime with a partner can be heart-breaking to see. Sometimes when hearing of a death it reminds us of those we have lost and old memories can resurface, not all of them good. The death of parents was something many of us could relate to, for most bringing mixed emotions, sadness and loss, but happy memories and feelings of warmth; sadly, for others childhood memories were not so good and reminders of deceased parents brought painful memories. One of our members paraphrased Jamie Anderson saying: “Grief is just love with nowhere to go” and we all felt that grief for those we love and care about is usually much more powerful than for the celebrities and public figures. However, there were several mentions of times when the death of a celebrity has affected us deeply, sometimes taking us by surprise, leaving us distraught and feeling completely lost.

Grief is not one emotion, it is not simple and it is not the same for everyone, but one emotion which underlies grief is empathy, empathy for the person who has died, for their loved ones, for others around them. Empathy is a powerful emotion and enables us to make connections, even with people we don’t know personally. Grief and death are frequently taboo subjects but having a cancer diagnosis means we have all had to face the possibility of our own death, even more so for those of us with a secondary diagnosis; knowing we can express our fears in our private group enables us to share that burden. We can say “I’m sad about her dying because it could be me” without fear of being judged. It is important to understand that grief is a natural process, not linear and not time-constrained. People grieve in different ways and for different reasons, but each is valid.