Chemotherapy effects and tips: BRiC's Collective Voice

 

A recent Sunday discussion focused on chemotherapy, how we prepare for it, how we deal with it and how it affects us.

Naz explained that along with the physical side effects, research shows that cognitive function can be impaired by chemotherapy and many of our members related experience of “brain fog”, often lasting long after chemo has ended. Cognitive impairment can also be caused by the emotional and psychological effects of a breast cancer diagnosis; and made worse by the ongoing treatment many of us face. Some of us who escaped chemotherapy still recalled a feeling of “chemo brain”. There is hope, as shown in some of BRiC’s research, that we can improve our neural networks with specific training. But chemo-brain is just one of the many side effects we discussed, along with hints and tips on how to cope with chemotherapy, and some of the things we wish we’d known before it started.

For many of our members chemotherapy was the hardest part of their treatment. We recounted tales of horrific mouth ulcers, of sickness, utter exhaustion, diarrhoea, unbelievable constipation, of the well-known hair loss – but why didn’t anyone ever tell us that it would actually hurt when the hair fell out? We talked about broken or lost finger and toe nails, of veins ruined by repeated treatments, of a loss or change in taste and smell (the distinctive smell of the chemo unit, something few can ever forget) and of going off foods and drinks we used to love; there were cases of sepsis and hospital admissions, of chemo induced heart problems and diabetes, weight gain or loss, skin rashes and irritations, eyes and noses that dripped like leaky taps, neuropathy and joint pain, which for many lasts years after chemo. There were headaches and mood swings, there was fear and loneliness, and so many more side effects that can debilitate even the fittest and most determined of us.

Lots of us coped with chemo by reminding ourselves that the benefits would outweigh the side effects and that “it’s just four more treatments” or “it’s just two more treatments”. Having that light at the end of the tunnel gave us hope and strength to carry on. Our members with secondary breast cancer don’t have that luxury. There is no end to treatment; they may be facing many years of chemo side effects and just thinking about that prospect is in itself exhausting.

Our members’ experiences of preparing for chemo varied, with some having lots of information ahead of treatment, honest answers to questions about side effects and good advice on how to treat them. Others were given a leaflet and told to expect hair loss and sickness, but not much else. We all agreed that having the right information prior to starting helps. We wanted to be told what to expect.

You will probably think you are dying at least once.

You will tell yourself you just can’t do another treatment.

You will consider stopping chemo to get some relief.

You will have days where you cannot get out of bed.

You might be a lucky one who suffers very little.

You will probably put on a brave face and people will tell you how well you are doing, even though you don’t feel it – and you will probably get fed up with people telling you your head is a lovely shape and it suits you having no hair!

You will sit up all night in a chemo/steroid induced insomnia.

Members commented that having the BRiC private group was a tremendous help, knowing there would be someone else up in the middle of the night to chat to, knowing there was someone else who’d had the exact same side effect and might know the best way to deal with it, and just knowing that you aren’t alone in what you are going through.

Many of us say we went into some kind of superwoman mode, some had no choice but to continue to work, we often tried to carry on as normal to shield our families from just how bad we really felt. Some of us discovered that trying to be superwoman was not such a good idea, as partners, colleagues and friends didn’t understand how gruelling the treatment really was and as a result had little sympathy when we needed to rest.

Along with practical ideas, like stocking up on ice lollies, laxatives, tasty food, comfy clothes, soft hats (who knew how cold a bald head can be?!), flip flops in case of sore toes, something to do/read during infusions which can take a long time - we often just wanted someone who could sit and listen, hold our hand and not expect anything from us, someone who would do the chores without being asked, who would entertain the children while we rested or bring us our favourite treat.

We did have some members who sailed through chemo with few of the nasty effects and without fail they said they felt extremely lucky. Chemotherapy kills billions of good cells in order to get at the cancerous ones, the overwhelming feeling was that chemo is a special kind of hell, a necessary evil, a war zone, something that isn’t “over” the minute you walk out of your final treatment, and something that not all hospitals prepare us for properly. Knowledge is power and knowing what to expect can help, even if it’s just in a small way.

Weekly Discussion Summary ~ Cognitive Enhancement

Forgetful? Can’t follow conversations? Forget names, or, words in the middle of sentences? Get the day wrong? Lose your train of thought? Can’t concentrate? 

Yes. Oh yes! 

These lapses are all too familiar to those of us diagnosed with cancer - it’s as if a brain fog descends and we need the grey cloud that is ‘chemo-brain’ to lift. 

We’ve talked many times about the phenomenon of “chemo brain”. However, this week our discussion focused on “cognitive enhancement” i.e what we can do to help manage the effects of ‘chemo-brain’ following a breast cancer diagnosis.

We know from our previous discussions that the reasons for impaired cognitive functioning are complex but can be linked to two factors: the effects of aggressive treatments for breast cancer AND the emotional trauma of the diagnosis itself - because the stress and anxiety associated with a cancer diagnosis has a similar effect to post traumatic stress disorder (PTSD) on the brain.(If we can hold in mind the significant emotional and psychological impact on the brain it can help to explain why people who have not had chemotherapy also experience chemo-brain.)

Some of us wondered whether our difficulties related to menopause, or menopause-like symptoms?

Naz explained that treatments such as tamoxifen and letrozole strip our bodies of oestrogen. Oestrogen is fuel for brain function and is a vital hormone enabling the binding of information synthesis, and it affects white matter integrity.  

Some of us wondered whether our experience of cognitive decline followed a similar path to the natural process of ageing? 

Naz told us that the brain is affected in a way that is similar to ageing, but the effects are far more dramatic - brain matter integrity is compromised and structure is reduced, causing a disruption in communication across those structures. 

We wondered if there were any supplements we could take for cognitive enhancement, and a supplement for ADHD was mentioned.

Naz explained that breast cancer diagnosis and treatment affect our brain in ways that are rather different to how the brain is affected in ADHD, despite some similarities. Also, a wider network is affected and the trajectory of the effects are different. 

Our members, who are women with primary and secondary breast cancer diagnoses, described a variety of memory and cognitive function failures, leading to a reduction in self-esteem and self-perception. This can have a significant detrimental effect on everyday life as we struggle in our work and our relationships. 

Naz told us that the good news is that cognitive function can be enhanced and the brain’s plasticity means that new neural pathways can be built and existing ones strengthened. Cognitive function can be improved through regular practice of targetted exercises, and continuing to learn new things and keep our brains challenged and active is key. 

Alongside this, self-care is so important, so that we don't become emotionally embroiled in feeling less competent than prior to diagnosis. 

Some of us had continued to work during treatment. We wondered if that helped us to stay sharp and to suffer fewer cognitive difficulties? 

Naz told us that while working has benefits for some - and indeed maybe a necessity - we do not know how working during, or indeed not working during treatment, affects our longer term cognitive efficiency. She reminded us that trying to get our brains to work harder when they may already be struggling to cope may not be a good thing. 

Some of us shared that we practice brain training and that we had found learning new skills could be helpful for focus. Activities that encourage us to co-ordinate brain and body may be particularly useful, perhaps playing a musical instrument or dancing. Likewise, creative, absorbing activities are also helpful for some. Mindfulness can also be a calming activity that can help in grounding us and facilitating focus.

Some of us wondered if we have simply become used to our new foggy state, perhaps it has become part of our ‘new normal’, part of the adjustment we’ve had to make post diagnosis. 

Many of us write lists and use reminders to help us get through everyday tasks.

Practising good self-care, being our own best friend, being kind to ourselves, can make a big difference to everyday wellbeing. 

Some of us practice brain training games - there are many apps readily available - but some of us find them difficult, and not being able to master them as perhaps we used to can mean they become counter-productive as we feel a failure. However, the research carried out by Naz and her team is showing evidence that cognitive training can reduce vulnerability in breast cancer. 

Naz told us that it’s important to persevere with ongoing learning activities and challenges that push us out of our comfort zone. 

This photo is part of a project led by group member Diane to represent how ‘brain fog’ feels. To find out more about her work please visit her facebook page Hands 4 Wellbeing: https://m.facebook.com/Hands4wellbeing/ 

If you are a woman living in the UK with a breast cancer diagnosis and you would like to join our private group please send us a private message via Facebook. 

Weekly Discussion Summary ~ Chemo Brain Top Trumps!

If only we could forget about chemo-brain.....

In our discussion this week, we played "Chemo-brain Top Trumps" and shared our brain lapses and tried to out-do each other!

Chemo-brain is one of our most engaging discussion topics because it feels so real, so alive, so forgetful. If only we could ever forget about forgetting.....

Oh, the joys of forgetting! But no, it's there, every day, just when we want to emphasise something important, just when we want to focus and concentrate on a line of argument, just when we want to name something, remember a name, or flag up an important point....

Chemo-brain, it emerged, affects us all, irrespective of whether we have primary or secondary breast cancer. Those of us who have not had chemotherapy also experience chemo-brain. We shared how often we run into a room to collect something, and yes, we've forgotten what it was as soon as we enter the room. We lose track of where we've put our keys, leave messages for ourselves or just occasionally, we might call our partner the wrong name! Whether our lapses are small or are large, they arise because of our inability to hold something (yes, it can be small) in our working memory. It can be funny, but usually it is hard, sometimes upsetting and very undermining of our confidence.

Why does chemo-brain happen?

Naz explained that chemo-brain happens after diagnosis and before treatment even begins. Most of the studies show that there are reductions in gray and white matter in the brain in areas that support cognitive functions such as working memory, attention and concentration. This is due to the impact of trauma, and the because the worries and fears that occupy our working memory take precedence, our brains end up having to work harder in the long run. We find that we take longer, we make more errors, we feel sluggish, and our cognitive functions are slow. The effects of chemo-brain are amplified through chemotherapy induced cognitive decline, as we have discussed before, and it's thought hormones may also impact on cognitive functioning.

Our discussion highlighted stress and fatigue make chemo-brain much, much worse and we feel we can become SO incoherent that we lose the ability to speak.

There's no doubt that chemo-brain was prevalent for all of us. Particularly hard is the lack of understanding from our families who unintentionally undermine us when our lapses stop being funny and start being annoying (as I'm writing this, my daughter has declined my suggestion that she write down the name of a book because "she has a memory"). We find it hard to talk about our chemo-brain at work and some of us shared that we feared being seen as less competent. Perhaps hardest of all, is the lack of wide recognition and support available to us which is why sharing and talking - and laughing when we can - is so important for our resilience.

If you are a woman living in the UK with a breast cancer diagnosis and you would like to join our private group please send us a private message via facebook: https://www.facebook.com/resilienceinbreastcancer/

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Weekly Discussion Summary ~ Chemo brain 4

"Chemo-brain is real."

Our weekly discussion explored the phenomena known as chemo-brain - the thinking, attention and memory problems that so many of us experience during and after cancer treatments.

Chemo-brain, as our group discovered, is a somewhat misleading term because even those of us who had not had chemotherapy described experiencing impairments in our thinking abilities.

What then do we mean by "chemo-brain"?

Our discussion, which included women with primary and secondary breast cancer, described the following symptoms: forgetfulness, lapses in attention and poor concentration; many shared that we experienced significant difficulties in relation to thinking and retaining information, particularly our short-term memory and 'working memory' by which we mean holding one task or piece of information in our mind while completing another task, and, with our 'executive function' which is 'the CEO of the brain' because it involves those skills which allow us to set goals, plan and get things done.

Sometimes our errors were small, and we could laugh them off, such as walking into a room and forgetting why we were there, or getting our partner's name wrong! But more often, our thinking problems feel much more significant and undermine our confidence and ability to function in our everyday lives, for instance at work and in our relationships with our friends and families. Worse still, those around us can get irritated and impatient, finding us poor company and less organised than we used to be.

Naz explained that chemo-brain is real and that research has repeatedly shown evidence for it - both 'self-reported measures' of cognitive decline that reflect our perception of our cognitive functioning and 'objective measures' of cognitive function, looking at behavioural performance on tasks that measure cognitive function, and 'neuroimaging measures' that reflect activity in the brain.

Imaging of the brain (neuroimaging) has shown that chemo-brain exists right after diagnosis and before treatment begins - individuals with breast cancer showed more brain activity in the brain structures that are involved in executive function and working memory, indicating what Naz called 'compensatory efforts' i.e. the brain is compensating. Interestingly, the behavioural performance of individuals with breast cancer was the same as non-affected individuals. This means that individuals with breast cancer had to use MORE resource to manage the same behavioural outcomes as non-affected individuals. Naz told us she is working to be able to understand this deficit in more detail.

Why does chemo-brain occur?

The trauma of receiving a life threatening illness diagnosis impacts on our psychological and social well-being and dealing with it requires mental as well as physical resoures. Our working memory begins to accumulate information and worries which supercede everything else. We can quickly become overwhelmed and our executive function becomes sluggish and inevitably prioritises cancer related information. It's not surprising that we experience problems holding other information in our working memory.

Fatigue is a natural consequence of chemo-brain as our bodies and our minds need to work harder, so much harder, just to do the ordinary, every day activities which we previously took for granted - it feels like we are swimming against the tide, using all our energy to stay in one place.

Chemo-brain, Naz told us, is exaggerated considerably by chemotherapy and radiotherapy. Hormonal treatments, lack of oestrogen and sudden menopausal symptoms also contribute, accumulating these effects on our ability to think, remember, and carry out tasks.

Naz explained that chemo-brain can increase our vulnerability to anxiety and depression. As a group, we described how our forgetfulness and lapses in ability severely undermined our self-esteem, self-confidence (at work), and our relationships.

How long can chemo-brain last for?

Naz told us that chemo-brain effects lessen over time, but this is highly dependent upon individual differences. Many of us felt that our chemo-brain has worsened in some aspects of our thinking, memory and attention.

What can we do to cope with chemo-brain?

* It’s easier said than done, but Naz said there is evidence to show that challenging our brains in systematic and adaptive ways can help improve processing efficiency and this has implications for well-being and resilience.

* Sleep has enormous effects on consolidation and the formation of new neural connections that can help maintain healthy cognitive functioning (but as we know, many of us struggle to sleep).

* Controversially, our food has an impact too, and some of us reported drinking water helped us to feel clearer.

As a group, we had lots of suggestions about ways to cope including: tackle small tasks immediately; write things down straight away; use notes, lists, a diary, post-its, phone reminders and alarms. Self-compassion and managing our stress can also help us to cope with the effects of chemo-brain. Our experiences highlight how little support and understanding is available to us and what we need most of all is for 'chemo-brain' and it's consequences to be taken seriously as well as interventions to help.

If you are a woman living in the UK with a breast cancer diagnosis and you would like to join our private group, please message via our facebook page

https://www.facebook.com/resilienceinbreastcancer/

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Weekly Discussion Summary ~ Chemo Brain 3

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

Weekly Discussion Summary ~ Chemo Brain 2

This week the focus of our discussion was chemo-brain, a catch-all term for the 'brain fog' that many women experience post cancer diagnosis. Commonly attributed to the after-effects of chemotherapy and trauma, it may also be present for those who have not had chemotherapy, and in the longer term, hormone treatments and fatigue may also be contributors.

Chemo-brain has long been a controversial issue, however recent research has provided evidence to substantiate brain changes which are significant enough to show up on scans. Our members provided consistent anecdotal evidence for these changes.

Women at various points following a breast cancer diagnosis (our group supports women with both primary and secondary diagnoses) reported living in a brain fog and being unable to function as well as they did before. For many, this leads to frustration and anxiety, with many feeling less competent at work and in their home lives. A resulting loss of confidence was reported by many, with those who have to attend meetings at work struggling particularly. 

We forget names, we lose track of conversation, we feel lost and foolish when memory incidents affect us in public, although most of us are able to laugh at ourselves too! We are unable to spell, write, read, perform basic maths or remember why we walked into a room. Some have found clean washing in the fridge and have picked up other people’s keys in an effort to remember their own. Some have fallen, dropped things, knocked things over. Having a foggy mind can lead to a clumsy body, which may not be such a laughing matter. 

We make lists, use our phone alerts, take copious notes, muddle through. Sometimes those around us are sympathetic but many of us have experienced the frustration of others as they find us different to how we used to be. Some women practise letting go and have found some comfort in acceptance, feeling pleased that they can drop the veneer of being in strict control.

A key point made by several women is that they worry that their forgetfulness may come across as rude or uncaring. Many are hard on themselves, others more able to go with the flow. Some spoke of increased anxiety, others noted a reduction. All those who contributed reported a significant change in their ability to think clearly and a difficulty in adapting to their new state of mind.

Despite these troubling experiences, Naz was quick to point out that there is help at hand. The brain has a plasticity that can be altered by cognitive exercises, and mindfulness and relaxation can be very helpful. Strengthening neural pathways via systematic cognitive practices may help us to rebuild the weakened parts of our brains.

If you are a woman living in the UK with a diagnosis of breast cancer and you would like to join our private group, please contact us by Facebook message https://www.facebook.com/resilienceinbreastcancer/

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Our thanks to Amanda for this lovely photo. 

Weekly Discussion Summary ~ Chemo Brain

Summary of our weekly group discussion ~ 17^th December 2016

CHEMO-BRAIN' - WHAT IS IT AND HOW DOES IT IMPACT ON US?

Chemo-brain is a common term used to describe the thinking, attention and memory problems that occur during and following cancer treatments.

Though chemo-brain is a widely used term, it is somewhat misleading because even those of us who had not received chemotherapy reported a notable impairment in our thinking abilities. However, Naz told us it is widely recognised that the trauma of a breast cancer diagnosis plays a significant role and that hormonal treatments also contribute to a reduction in our cognitive abilities.

Although there were exceptions, the overwhelming majority of us described experiencing significant difficulties in relation to thinking and retaining information, particularly our short-term memory and working memory ie holding one task/piece of information in mind while completing another task. Sometimes our errors were small, and we could laugh off our lapses in memory, but at other times, we felt our thinking problems were much more significant, undermining both our confidence and our ability to function in our everyday lives, for instance at work, in social settings and our relationships with our friends and families.

Naz explained that it is clear that the brain networks involved in processing (cognitive) information efficiently are heavily impaired in women with a breast cancer diagnosis. Both the attached paper and our own experiences highlight that these difficulties continue to impact on us to a varying degree, sometimes over many years.

Naz told us that there is also solid evidence to show that brain grey and white matter is reduced as a result of a breast cancer diagnosis and chemotherapy treatment. The mechanisms in our brains which are involved in cognitive function have to work harder to achieve similar outcomes to those which individuals without a breast cancer diagnosis (matched controls) achieve with less effort which explains why some of us experienced mental as well as physical fatigue.

Psychological interventions focus on our depression and anxiety, yet our symptoms and experiences only served to highlight how little support and understanding is available to us. We need the medical world to take 'chemo-brain' and the consequences of it seriously as well as interventions which improve the brain’s attention and memory and in turn our overall psychological well-being.

http://www.curetoday.com/community/barbara-tako/2016/12/chemo-brain-it-doesnt-always-go-away

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