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.
Do you ever feel angry about getting breast cancer?
Have you ever wondered whether 'Pink positivity' is a smokescreen for how we really feel?
This week our discussion explored whether negative emotions such as sadness and anger undermine or promote happiness.
We live in a culture where 'happiness' is valued, where the focus is on enhancing and practicing a so-called positive emotion. Many of us could relate to this in relation to our experiences of managing with breast cancer. We focus on the positives, we cultivate a 'positive mental attitude' and there's no doubt that this helps us cope. But is there a cost to our well-being?
This article was the starting point for our discussion which mobilised a variety of different views on whether negative emotion could be helpful, particularly in relation to anger as a force for change.
"The results of the study, compiled by an international team of researchers, found happiness is "more than simply feeling pleasure and avoiding pain".
It was fascinating to hear that some women feel very angry about their diagnosis, others mildly, others not at all. Some find themselves more emotional post diagnosis, others feel flat and numb. Many of us agree that to experience wellbeing we need to allow our feelings in, positive or negative. Many of us have learnt to be controlled in what we express, so as not to upset or worry those close to us. Some went so far as to say they feel frozen emotionally by the trauma of their diagnosis.
For some women, anger leads them to ask 'Why?' Not so much about our individual diagnosis, but why are so many women still being diagnosed with breast cancer? We wondered if we became angry about this, perhaps we could come together to campaign and raise money to find a cause and a cure.
We often hear that a positive attitude helps us through, which can lead to a bottling up of how we really feel. We want to be positive but there are times when we feel anything but positive, and want to scream and shout and cry. It can feel as though we are not allowed to be negative at all, and if we are fortunate enough to recover, we are expected to embrace life full on and climb mountains, run marathons, fill our lives with fund-raising activities, and be glad to be alive every moment.
Perhaps acceptance is a key factor with emotions, allowing ourselves to express whatever it is that we feel rather than constantly putting on that brave face?
For some, recognising that the anger is there, and must remain hidden for them to continue living their lives, leads to a self-compassionate awareness that permits them to be kind to themselves when they are feeling low. For others, anger can drive them forward and help them find the determination and resilience to carry on.
Our group gives women with primary and secondary breast cancer a safe space to share all our feelings, to understand. We will hold hands when we feel angry or sad, fearful or upset, or just plain fed up and exhausted, unable to keep that positivity going.
http://www.bbc.co.uk/news/health-40900811?SThisFB
‘You think you are saving for a rainy day, but when the heavens open, you’ll realise you were actually saving for a sunny day.’
If you were writing a letter to yourself, the self you were before your diagnosis of breast cancer, what would you say?
What are you waiting for my darling?
This is your one, true life – seize it, be bold and take chances.
Don’t live every day as if it is your last – live every day as if it is your first!
Do all the things you want to do today because tomorrow may never come. If you don't achieve everything, then that is also fine, but dare to follow your heart.
If you work long hours, running yourself into the ground, ask yourself if this is really the life you want.
If you are lucky enough to already be doing what you love, then celebrate it, but go about it wisely.
Remember to 'de-stress' and 'take perspective', look for what they call 'the bigger picture'.
Do more of what makes you happy – clean less and party more, save less and spend more, make time for more date nights.
Exercise more self-compassion, learn to appreciate yourself.
Remember that you are amazing – have confidence in yourself and all your abilities.
Stand up for yourself and put your own needs first sometimes.
Express your feelings – they will free you and allow you to be true to yourself.
The world will not stop turning if you say ‘no’ and you will still be a kind person.
Worry less about your weight and the size of your bottom and celebrate your body with all its glorious flaws.
Your body is a temple, nourish it, be kind to it, enjoy it.
Wear beautiful lingerie, buy that handbag, those shoes, those ear-rings.
Cherish those you love and hold them close; hug them tight and tell them you love them often.
Drop those people who don’t enrich your life or who drag you down.
Not all your friends will be there for you or support you when you most need it, but you will be okay.
That advice that you are so good at giving others “to slow down, and be kind.” Follow your own advice.
Don’t be afraid to allow the sadness in.
Get a cat sooner. Or a dog. And a horse.
Remember that you will cope with whatever challenges lie ahead.
Unpleasant experiences will not last (the same goes for pleasant ones).
Get as much advice as you can about surgery and breast reconstruction, including complications.
Remind yourself that you are a good person, don’t be so hard on yourself!
You don’t always need to say ‘I am fine’. It’s okay to acknowledge what you are going through.
Accept that you are fragile but that in your vulnerability lies strength.
Don’t confuse acceptance with giving in or giving up.
There is always hope, it shines like candle-light in the darkness.
Show more vulnerability, ask for more help.
Look out for the little things, a smile, a hug or a kind word.
Cherish each precious day, even those that don’t go well.
Try and experience pleasure from the smaller things in life, the moments that go quickly but whose impact lasts a long time.
Make space for quiet, for nature, for the oceans.
Look up at the stars. Dream.
We learned that being able to ‘re-frame’ our vision due to a life threatening diagnosis is one of the most challenging, yet constructive, features of learning and adjusting through trauma. Naz told us that re-framing helps us to grow, take perspective, and to correct ourselves when we lapse into self-criticism - feeling negative about ourselves and being critical can be one of the dominant features we live with because we want to be a better ‘us’ and better our lives.
What does a breast cancer diagnosis mean for single women? For those who were waiting for the right partner to come along before diagnosis, and for those whose relationships floundered after diagnosis. Treatment affects both body and mind, and can often dent our confidence. Do single women envy those with a supportive partner who sees them through?
When we do decide to date someone new, when do we reveal our diagnosis? Will our date run a mile or accept our flawed body? These are difficult questions to answer. For those with children, being a single mum is hard enough without the added complication of serious illness.
Our single women contributed many different views to this interesting conversation: some said they were happy single and had no intention of seeking a relationship; others, although content to be single for now, were keen to find a new love at some point. Many had dealt with difficult break-ups during or after treatment, and this had made their experience of cancer even more traumatic. On the plus side it was heartening to hear that many of those without a partner had received strong support from friends and family.
We discussed the effects of treatment such as loss of libido and feeling unattractive. This appears to become less of a problem over time, with women dipping their toes in the water of dating, and many trying internet dating to meet new people. A few are unhappy at being single and want to find a loving partner, but are held back by a lack of confidence and a fear of having to be intimate with their new bodies.
Some women remarked that though they may not be single, their relationship suffered because of their diagnosis. Intimacy had not always continued for some couples, and many of these split up at some point. Others had rallied round and found a new way to be together, saying that it felt like starting again in their partnership.
We heard some inspiring tales of new post-diagnosis relationships being formed which have blossomed into loving romantic partnerships. These women remind us that if we are truly open to a new person coming into our lives then there is probably someone out there who will suit us. As we grow into our new selves, whether we are living with secondary cancer or we are post-treatment and clear for now (and we have members from both these categories in our group) we learn how to take our place in the world as part of a couple or as a single woman. Without doubt our cancer changes us, but with support (such as that provided within our private group) we can move forward towards whatever we believe will make us happy.
Thank you to Jane for the use of her lovely photo.
Is there a role for supplements following a diagnosis of breast cancer?
Our previous discussion on diet highlighted controversial scientific, as well as lay, views about the role of specific diets in cancer prevention, progression and treatment. Naz told us that the literature shows that there is a similar level of disagreement regarding the role of specific supplements when it comes to targeting cancer. Evidence from clinical trials showing direct causal links between the effects of some supplements/treatments on cancer are weak or non-existent.
However, as Naz explained, this does not mean that we should rule out theoretical ideas based on these links. The effect of supplements on general health is also debatable, whether herbal or chemical. While there is general knowledge that certain compounds are healthy and can boost our immune systems, evidence based trials to prove their efficacy are scarce or have not been able to produce replicable results.
Where does this controversial, and sometimes overwhelming evidence leave us?
Our discussion, which included women with primary and secondary breast cancer, highlighted our hopes for better health, irrespective of the evidence, because we want to feel better and we want to support our physical well-being. Controlling what we eat and ensuring that we are providing our bodies optimum nutrition is an obvious way forward to help both our physical and our mental health.
Many of us described wanting to re-build our strength and immune system following debilitating treatments and continue to suffer short-term and long-term side-effects such as fatigue and pain. Janet summed up how many of us felt:
'It makes sense to me that our cells require optimum nutrition to work properly.....'
Hormonal treatments, and early menopause, impact on bone health and many of us took calcium as well as Vitamin D, under the supervision of our GP. Vitamin D3, we heard, was thought to be most beneficial. Vitamin C, magnesium, iron and probiotics were other popular choices, as well as Omega 3 and tumeric. Some women had sought advice from Nutritional Therapists, or done considerable research to educate themselves on this subject. Others had attended workshops at their local cancer support centres or said they were wary of taking supplements and had instead adjusted their diet to try to ensure optimum nutrition.
Have you been using supplements? Do you find them helpful? We'd love to hear your views and experiences.
