Our Sunday discussion this week centred around small practical steps that our women have taken to build their resilience. Naz introduced the topic with her science hat on, reminding us that our brains have the capability to build new neural pathways which may help us to become more emotionally resilient. Whilst of course our bodies need time and nurture to heal, our brains may benefit from challenges which allow neuroplasticity to support our growing emotional strength. We need goals in order to move forward in life.
Some women reported not wanting to set long term goals since their breast cancer diagnosis (we have members with both primary and secondary diagnoses) but without exception our women reflect on where and how they want to be, and take steps to make things happen. Some days, when we're struggling physically, it's a huge challenge just to get out of bed. On other days we can climb mountains and run marathons, but not without physical and mental training and preparation. We can't just turn up at the start line expecting to complete the course.
Our women employ a variety of strategies to move forward following the major disease that is breast cancer. The trick seems to be a mixture of self-compassion and breaking free of our comfort zones. The theme of appreciating the simple everyday things in life came through very strongly, alongside not sweating the small stuff. We can't avoid stress completely but we can choose not to let things that don't really matter get to us.
Having a go at something new is key for many of our members, from singing and dancing to crafting and studying. Finding what makes us happy by going out and having a go, and then doing more of the things that bring us joy, is a well-established method of improving wellbeing. For those who have busy working lives and families to look after it's important to achieve some balance, with many citing daily walking (some with dogs) as key to their emotional and physical health. Resting is a huge priority for our members, and many have learnt to listen to their bodies and take it easy when they need to (though many also have a way to go on this one as we strive to look after everyone around us!)
The everyday can still be challenging for us as we recover our health or work to maintain it. Music keeps us calm, uplifts us or soothes us. Exercise feeds both mind and body. Many have used mindfulness and breathing exercises to good effect. We all need things to look forward to so booking ahead for little or large treats provides these. Everyday treats are also key for many, as we want to enjoy our lives not just live them. We treasure a smile from a child, a sunny day, a refreshing shower, a light traffic commute, a lunchtime walk, a nanny nap. We are grateful, we laugh a lot. Some of us also cry a lot as we understand that living well means feeling sad as well as happy.
One of our members found us this quote to round off our discussion : 'The art of being happy lies in extracting happiness from common things.' Henry Ward Beecher.
"I would like people to think about the stigma of cancer in a similar way to thinking about the stigma of disability."
This week our discussion explored our experiences of dealing with our employers.
Being understood in our workplace can be a defining factor in helping us re-build our self-esteem upon returning to work, or, conversely undermine our already fragile confidence and self-esteem.
Some of us were able to carry on working during our active treatment and described the difference that sensitive colleagues and supportive managers made to us. We learned that there is no 'right' time to return to work, or to start a new job. In some ways, our experiences reflected that re-entering into work when expectations of 'moving forward' loom high (at the end of active treatment) is when we are usually at our most vulnerable. However, others described discrimination, for instance on being diagnosed with a recurrence. Whatever our circumstances, communicating our vulnerability when we want to put on a strong image that we are competent and capable is not an easy task.
As a group of women with primary and secondary breast cancer, our experiences were very varied. We heard of supportive employers as well as shocking examples of discrimination and injustice, which not all of us felt we had the emotional or practical resources to challenge. Some had felt forced to give up careers they loved, others had taken early-retirement. Many of us wanted to continue in careers that we loved but were struggling.
Not everyone was aware of the protection afforded to us by Equalities legislation, or that this would continue for the rest of our working lives.
But are we disabled?
Some of us expressed feeling ambivalent about this - having recovered from breast cancer, we were surely not disabled? Many of us felt the need to show we were stronger, just as competent and skilled as we always were and feared being underestimated or overlooked. Some of us felt that we needed the adjustments that we could request under disability procedures and this supported us to manage the demands of our jobs, particularly alongside issues like lymphodema, fatigue, pain and other side-effects.
Those working in organisations with clear procedures seemed to fare better, but not always. We learned that it helps if managers can have a conversation with us about our cancer and can separate poor performance, from support to help us to perform well.
Here are some practical suggestions:
A realistic phased return which introduces us back into the workplace.
Part-time working.
Staggered start and finish times.
Reduced workload/caseload.
The ability to rest in the day.
Support to plan and prioritise work.
Equipment, for instance if we have lymphodema.
We need employers to understand that the impact of cancer on us changes, a flexible approach and supportive attitudes workplace.
Macmillan and Breast Cancer Care provide information on working alongside breast cancer.
Our weekly discussion focused on sleep, or lack of it. Insomnia is a faithful partner of anxiety, and so many members reported having that middle of the night active mind that refuses us rest. Naz told us that insomnia may be harmful to cognitive function, both in the short and long term. A vicious circle is formed as our worry about not sleeping makes the condition worse.
Our members are women with both primary and secondary breast cancer, and they shared many things which lead them to sleep poorly. Side effects of treatment and early menopause can hinder sleep: fatigue is in itself a symptom and a contributor, and hot flushes which wake us up were cited by many as the main issue. Anxiety affects many - fear of recurrence, progression, family and work worries. Pain is another factor, also cramps, and needing to get up for the toilet frequently.
Some women reported a reduction in the quality of their sleep rather than insomnia, with many sharing the feeling that they sleep very lightly. The trauma of a breast cancer diagnosis may also affect our subconscious and introduce fear we aren't even aware of, which affects our peace of mind and consequently our ability to sleep well and wake refreshed.
Despite all the complaints about insomnia, our members have many ways of helping themselves to sleep better. Some have asked their GPs for medication, others rely on lavender oil. Some fall asleep to an audiobook or music, others count backwards, meditate, or write down their worries before bed. Breathing and relaxation exercises, and Reiki, may be helpful in calming us. Relief from hot flushes may help better sleep, with women trying acupuncture, medication, and chill pillows. Not drinking caffeine late in the day and cutting out all liquids (yes, even that glass of wine may have to go!) in the evenings may help with the regular trips to the loo. A cool dark quiet well-aired bedroom, a bedtime routine without the phone or tv, a warm bath or a cool shower, all are helpful.
Naz pointed us towards this article, which largely aligns with what our members find useful:
http://healthysleep.med.harvard.edu/healthy/getting/overcoming/tips
Naz's advice to all of us who struggle with sleep is to accept it, work with it, rhyme with it. It will, if we're lucky, come and go. We may feel at a low ebb after we've slept badly, but generally our bodies cope well and can live with it. A visit to the GP would be sensible to address any prolonged period of insomnia.
Cancer takes a back seat - just for a while!
This week we asked our members, made up of women with both primary and secondary breast cancer, to tell us about themselves without referring to their cancer. We also probed for an interesting fact.
This discussion highlighted the wide range of women who are affected by breast cancer - the youngest members in the group are in their early 20s while the oldest are well into their sunset years. Our members come from all walks of life, from homemaker to police officer, from nurse to teacher, with some retired.
Many women shared their stories and it was a joy to read them, what an amazing bunch we are!
Chemo Brain Chaos
A diagnosis of breast cancer is a traumatic event. Experiments show reductions in the brain's white and grey matter following diagnosis, even before treatment begins, which is exaggerated through treatment and beyond. Cognitive function is reduced, and studies find those with a breast cancer diagnosis have to work harder to achieve the same levels of performance as those without. The trauma leads to a focus on recurrence, and rumination and worry are common, leaving less working memory available for goals and day-to-day functioning. Women may become anxious and possibly depressed leading to a further decline in cognitive efficiency.
For those who have had chemotherapy, there may be lasting effects on cognitive ability, hence the term 'chemo-brain'. However, similar symptoms are reported by those who have not had chemotherapy, and it is clear that the experience of 'brain fog' is common for many women diagnosed with breast cancer. It is likely that the trauma, alongside the active treatments (such as surgery and radiotherapy) and ongoing hormonal medication, ovary-removal as well as treatments to prevent the spread of secondary cancers (which can bring on early menopause, or more severe menopausal symptoms), is sufficiently disruptive to cause 'chemo-brain'.
Many women with both primary and secondary diagnoses reported finding very little sympathy for 'chemo-brain' from the medical profession, though others felt well supported by their teams. As well as general memory loss typified by forgetting names and appointments, women struggle to concentrate and follow conversations, and this impacts on their confidence, particularly in the workplace. Family and friends may get impatient with them, finding them less efficient and organised than they used to be. For articulate women used to multi-tasking, this is a huge source of frustration.
Fatigue was a contributing factor, with many women finding 'chemo-brain' worse when they are tired, but also noting that the brain fog means more energy is expended in completing every day activities and so leads to greater fatigue.
There were lots of excellent suggestions to help: for example: tackle small tasks immediately; write things down straight away; use multiple reminders: use notes, lists, diary, post-its, phone reminders and alarms; pace yourself; take breaks (fresh air and exercise); cut yourself some slack; ask for help.
Fortunately we can train our brain to better regulate our emotions which assists mental clarity. By strengthening the relevant neural pathways and the emotional connections between our emotional and cognitive parts of the brain, we can increase our cognitive flexibility and improve our day to day ability to function efficiently.
This popular topic is one we've discussed before. New members give fresh perspective and seasoned commentators find new angles. Previous summaries can be found in our blog, Panning for Gold: http://bcresiliencecentre.blogspot.co.uk/search/label/Chemo%20Brain
'I'm planning to swim the English Channel.'
Goals was the topic of our weekly discussion - 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.
'I am more vulnerable than I thought but much stronger than I ever imagined'.
This week we explored whether and how we could use our vulnerability to become stronger. Naz explained that vulnerability is a core ingredient of resilience - the capacity to translate vulnerability and fragility into strength - and to do this when we are hurt and when we feel depleted, counterintuitively enables us to go forwards on a core pathway to resilience.
A cancer diagnosis forces us to inhabit what for many of us is an unfamiliar country and illness brings into sharp focus our limited control over our bodies in the face of a punishing onslaught of treatments. It strips away layers of our identity and our sense of who we are. Our emotional landscape becomes more intense and complex. Yes, we experience joy but we also have to learn how to manage a tsunami-like wave of losses and pain, at times threatening to carry us away.
So are we strong? Or are we vulnerable?
Our discussion, which included women with primary and secondary breast cancer, heard how some of us had given up qualities and behaviours which we had previously seen as 'strong' such as 'being in control' or working long hours. Others felt forced to relinquish aspects of their identity which impacted on their self-esteem, perhaps they were no longer able to be 'reliable' because they take sick leave or need to cancel arrangements at short notice. Some women described the challenge of giving up their helping roles, and finding strength in allowing themselves to accept help and support. Others described the ways in which their vulnerability had given them the strength to prioritise their own needs, by doing what they want, not what's expected of them.
Some of us wanted to feel less fragile, and to learn how to be less disappointed, less hurt. We feel like new mothers with a baby we want to nurture and protect from all that is bad in this world while feeling and anticipating intense happiness and joy. We heard that expressing our emotions, practicing compassion, accepting ourselves and forgiving ourselves for our mistakes can allow us to transform our vulnerability into strength. We find ways to practice gratitude, we daydream, and we are more creative.
Vulnerability and strength, like light and darkness, support and complement one another. We concluded that although we might feel we have a long way to go, we are all on our own path on a journey to a discover our own truths.
