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. 

How it feels to be diagnosed with secondary breast cancer

How it Feels to be Diagnosed With Secondary Breast Cancer...

Alone. Devastated. Isolated. Shocked. Abandoned. Unsupported.

These were just a few of the words used by women living with secondary breast cancer to describe their feelings in a discussion about secondary breast cancer.

A few women had been recently diagnosed with secondary breast cancer after learning to come to terms with their diagnosis of primary breast cancer, others had been diagnosed with secondary breast cancer some years ago, and a smaller number had received the news that they had secondary breast cancer when they first presented i.e they did not move from being treated for primary breast cancer and then go on to develop secondary breast cancer, and instead had to deal with this shock immediately.

We heard that living with secondary breast cancer feels like charting unknown territories as women try to live the best life they can, and live it to the full, all the while knowing that it is not going to be as long as they hoped, that maybe they won’t get to see their young children, or their grandchildren grow up.

We heard how incredibly lonely and heart-breaking it feels not to be offered the same amount of support and attention received during treatment for primary breast cancer.

We heard how marginalised women feel when there is so much emphasis given to “moving forwards” after active treatment. There was a plea to remember that women with secondary breast cancer only finish treatment when it stops working and no options are left for them.

We heard that women with secondary breast cancer are afraid of scaring or upsetting women who are currently in the position of being “NED”. We heard that they feel guilty for their feelings when they hear about others moving on with their lives when they cannot.

 

We heard how it feels to try to live with uncertainty about the pace of progression. We heard that women do not want to be defined by their disease; they do not want to be seen as “terminal”. They want to be valued for who they are, to be loved and supported by their family and friends. They do not want people to pretend or avoid their situation, they need their position to be held and validated but they also need support to continue to participate in every day life, to be “normal.” Women strive to live the best in every moment, even if that moment was not what they had wished for.

Some women manage to continue working, others have had to reluctantly relinquish careers. Women relayed an experience of long periods of stability in their health, sometimes punctuated by periods where they are very poorly, perhaps with fatigue, perhaps following surgery or having had cyber knife treatment, for instance. Whatever stage women are at, they continue to contribute to their children, families and communities.

We heard that women find it hard to cope with the limited understanding they encounter about secondary breast cancer. This widespread ignorance is isolating and they have to make difficult choices about what to share and how to present themselves.

We heard women share that when they were first diagnosed they thought they would never be happy again and of their surprise that it is possible to experience joy alongside sorrow. We heard of the challenge of balancing profound sadness alongside the paradox of sometimes forgetting one is ill at all. One woman told us about her idea of living for three years and how she thought “three years, that’s not so bad, it’s a thousand days - I can do a thousand nice things”. So, she does nice things whenever she can.

Naz told us that there is little research into the quality of psychological well-being in secondary breast cancer, but what there was highlighted three main points:

i) the quality of care is low or non-existent (but improving) for women with secondary breast cancer,

ii) that psychological vulnerability is much higher, but,

iii) cancer related expressiveness (ie sharing emotions) can help ease some emotional burden.

In short, the psychological cost weighs heavy, and there is disappointment at the level of care invested in secondary breast cancer.

A few women reported coping better when they’ve received ‘good quality’ care from a breast cancer nurse or their oncologist.

How can we help a friend or someone we know who has been diagnosed with secondary breast cancer?

Those of us with a diagnosis of primary breast cancer draw on our experience to be supportive, to listen and hold hands, we try and put aside our survivor’s guilt, enjoy our friendship, do fun things, but be there for hospital appointments and the worry. A few of us shared having spent special times with our friends whose health was failing. Our love is unconditional.

At BRiC we do not draw a line between primary and secondary and instead see both on a continuum. We understand that having a safe and non-judgemental place where we can share our deepest fears can help - a place to talk, to cry and to nourish.

We are all ears and eyes. We are listening.

Weekly Discussion Summary ~ Coping with Fear 2

“Fear following a cancer diagnosis takes many forms - it may exist as constant background noise or visit unexpectedly and violently, causing a panic attack.”

Our discussion this week focused on dealing with fear - for those of us with primary breast cancer, of our cancer returning, and for women with secondary breast cancer, progression. We talked about what triggers our fears, and how we deal with them.

Fear following a cancer diagnosis takes many forms - it may exist as constant background noise or visit unexpectedly and violently, causing a panic attack. It may lessen with time or become magnified. We are naturally vigilant and so aches, pains and unusual symptom can cause anxiety. Appointment letters, mammograms and waiting for test results are particularly stressful. Needing an X-Ray or MRI scan fills us with dread. We line up for our tests and scans and wait anxiously for results, fearing the worst. 

We often face these fears alone, with limited formal support and we deal with the emotional fallout as best we can. A few of us have a friend or family member we can share with, but many of us, irrespective of whether we have primary or secondary breast cancer, deal with these fears on our own, not wanting to worry our loved ones, or feeling that their 
patience runs thin if we try to talk about our concerns.

Common triggers for increased fear are forward planning, renewing documents, birthdays and special occasions. These seemingly joyful events lead us to wonder if we will be here to see more anniversaries. For many, a strong fear is not seeing children grow up and not being around to celebrate major milestones with them.  Being unwell generally reminds us of how precious our health is, and for those on continuing treatment the side effects often render us ill and tired.  

Many of us don’t look very far ahead as we fear we won’t be here for future plans. We shared that the worst time is often the middle of the night when, unable to sleep, our fears may take on monstrous proportions.   

Those of us with a family history of breast cancer may feel more at risk and this deepens our fear and becomes something we take forwards with us.

For some, fear is so dominant that it limits our zest for life and we become contained or restricted in what we choose to do. When fear is constant and all-consuming, it becomes exhausting.   
Others described getting on with our lives reasonably well when things are going smoothly, but when additional stressful events hit us then the fear rises and compounds our anxiety, and we beat ourselves up for not being able to cope.

We often use metaphors and analogies to describe how the fear feels: one is based around the word CANCER itself, which appears in capital letters in the forefront of our mind at diagnosis and is so large and dense that there is no way through, round or over. 

As time goes by the word gets smaller and we may find we can see through it or go round it, and sometimes it fades away into the background, perhaps into nothing.   

Another is seeing the cancer as a gargoyle like creature who sits on our shoulder shouting CANCER in our ear.  We can knock it off but it follows us around, mostly quiet and at a distance but sometimes sneaking up close and demanding our attention. 

We use many ways to cope with our fear, one being to keep busy and not dwell on what might happen. Some have worked hard to accept that some things cannot be changed and that a healthy resilient approach is to live for the day and enjoy the moment. Some of us live with the attitude that worrying won’t change anything and will only spoil today. Coping strategies include imagining the worst that can happen and turning it into a ‘hot spot’ thought. Then realising  that it probably won’t be that bad, but working through some practical solutions to resolve it. Sometimes wallowing in the sadness and fear and really feeling it can help, as long as this is time limited. We might follow this with a treat, some self-care – perhaps a bath, some chocolate, a walk. 

We agreed that more needs to be done to support us psychologically. Our group is a place where women can share their fears, knowing that they will be listened to and understood.

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

Weekly Discussion Summary ~ The Positivity Cloak

“......wearing the so-called positivity cloak can make us rigid in our approach and prevent us from exploring and appreciating the wide range of emotions that....make us human.”

In this week’s discussion, we explored whether the relentless pressure of “positivity” and “positive thinking” is helpful.

In our society, to be seen as “positive” is strongly linked with success. Positivity is about being goal driven, and, we are taught that the right attitude can help us overcome challenges. With a positive mindset, there is no room for sadness or anger and negativity is seen as destructive.

Naz explained that while being positive in the face of adversity can be adaptive in the short-term, being positive in the face of adversity can actually undermine us - wearing the so-called “positivity cloak” can make us rigid and prevent us from exploring and appreciating the wide range of emotions that not only pave the way towards resilience, but make us human. 

Naz explained the concept of ‘emotional agility,’ or what she called emotional and cognitive flexibility, is something that current neuroscience research is interested in. This refers to the ability of the brain to embrace (not only accept) the wide range of our experiences, of negative as well as positive emotional experiences. We are complex, so taking a rigid approach in favour of positivity (or negativity for that matter) is counter productive.

As women with primary or secondary breast cancer, our responses and emotions were diverse and complex. However, many of us shared that we had been surprisingly upbeat during and after our treatment. Often numb and in shock, we wondered whether distancing ourselves from our emotions and the full force of what it means to have, or have had breast cancer does not hit us until we feel in a position of relative safety. We rarely cry - privately or publicly - and instead focus our energies on dealing with the demands of treatment. We wear a positive smile to protect ourselves and our loved ones. 

For women with primary breast cancer, expectations for 'recovery' after active treatment has finished can make it even harder for us to get in touch with these feelings as we are not only seen as ‘better’, the gratitude we feel at having a second chance, and 'bouncing back' means we easily push away any negative feelings. We don’t want to appear weak. 

Whether we have primary or secondary cancer, we struggle to find our voices and so often, we hide our fears and losses behind a mask of positivity.

Naz told us that the brain continues to make sense of the impact of the trauma, which unfolds in different ways over many years. The more flexible our brains, the better we can adjust to changing emotions. Our emotions speak to us, they signal something important - there are no 'negative' or 'positive' emotions - every emotion we experience is adaptive, it wants to protect us, in relation to the situational demands we experience. It is counterproductive to be unable to switch and embrace the different emotions we experience. We need to move between them,  to embrace, experience, and endorse the range of the complex emotional experiences we go through. 

Emotional complexity is emotional richness. It's power. It's flexibility. 

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.

Image credit: Buddha Doodles whose images are certain to lift the spirits!

Weekly Discussion Summary ~ Cancer doesn't define us

Cancer doesn’t define us.

Our discussion this week allowed us to celebrate who we are, and all our extraordinary experiences and abilities as we introduced ourselves without mentioning the C word. Our cancer is part of us but it doesn't define us.

We chose this - one of our most popular topics - as a way to welcome and get to know each other better. This was particularly timely as we have welcomed more than sixty new members to our private group following our post on the impact of hormonal treatment and brands. These women will now be in a position to benefit from, and contribute to, our work to build resilience following a breast cancer diagnosis.

In our private group we are united in that we all share that breast cancer diagnosis. Some of us have a primary diagnosis, others have experienced a new primary breast cancer, or recurrence and some of us have secondary breast cancer. We warmly welcome all women living in the UK with a diagnosis of breast cancer and we support each other through common experience and shared knowledge. We share our highs and lows, debunk common myths, keep an eye on the latest developments in diagnosis, screening and treatment, and take part in research.

Together we can make a difference.

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.

Thank you for your support!

Weekly Discussion Summary ~ Hormone treatment brands

“I was shocked at the difference a brand could make.”

In our discussion this week we explored the apparently wide-spread but largely unreported experience of some women in relation to the way that differing brands of hormonal treatments can lead to a significant increase or decrease in particular side-effects. 

While Tamoxifen is often described as a ‘well tolerated’ treatment, particularly in comparison with harsher treatments like chemotherapy and radiotherapy, it is not helpful to view hormonal treatments as the ‘soft option.’ Our members – women with primary or secondary breast cancer – regularly report a wide range of debilitating side effects including joint and muscle pain, hot flushes, disturbed sleep, impaired sexual health and, as we know from a previous discussion, impaired cognitive functioning. What is less recognised is that very many of us find that these side-effects increase, or decrease, depending on the brand.

Our experiences as a group were wide ranging and varied, both in terms of the named generics we had been offered, and the way we responded to them. Generally speaking, the main brands of Tamoxifen used by us were manufactured by RelonChem, Wockhardt, Genesis and Teva. 

As we shared our differing experiences, a picture emerged where many of us had noticed specific and unpleasant side effects due to changes in our brand, but also that these effects varied considerably between us. For instance, some of us might find one brand made us feel so sick that we could not take it, another really caused us to experience vaginal soreness, or yet another caused an unbearable increase in our hot flushes. Although no one brand stood out as being preferred by the majority of us, what was clear was the significant impact on us of changing our brand of medication. Whether this is because we become tolerant to certain brands after a time, so it's the chopping and changing that affects us, or whether it's the make-up of the brands themselves that affects us, is unclear. 

Those of us taking Aromatose Inhibitors like Letrozole, shared similar effects, although here a huge variation in cost also plays a part in availability and willingness to prescribe. A few of us shared that we experienced no discernible changes between brands, but for the vast majority of us, these variations had a negative impact on our health and wellbeing and in a few instances, these side-effects could make the difference between continuing with our hormonal treatment and stopping it. It was also clear that anyone struggling to manage side-effects should consider changing their brand to see if it is easier to tolerate.

Given the effectiveness of hormonal treatments, and the increasing longevity of prescribing regimens, we felt that our experiences needed to be taken more seriously by medical professionals.    

A few of us found our pharmacists and GPs sympathetic to the variations in our response and that they were willing to try to help us to source our preferred brand. Others reported finding that our experiences were completely dismissed, or, that we were told that it was simply not possible to source one brand on a regular basis. Sometimes despite the support of both GP and pharmacy, particular brands become unobtainable for no apparent reason. 

In the absence of research, some of us had developed our own theory for the wide variations in side effects, even going as far as listing brand ingredients to use as a basis for comparison. The most common hypothesis among us was that different manufacturers use different fillers, for coatings for instance and it might be possible that that these different ingredients subtly affect the way that the medication is being absorbed by our bodies, leading to significant changes in our tolerance to side-effects.

Interestingly, this phenomenon - whereby patients experience a tolerance to one brand of medication - seems to be more widely accepted in relation to other conditions, for example treatments for epilepsy and even HRT, where members reported having more success in obtaining continuity of brand.

As far as we were aware, there is no standard protocol in place in relation to the brand of medication we are prescribed. Indeed, several of our pharmacist members very helpfully explained that GP’s are trained not to specify a generics manufacturer (although some do) due to the expectation that there is no difference between generics brands, and that most of us won’t be aware when an off patent drug is prescribed. Quite reasonably – on the face of it at least – the expectation from the NHS is that pharmacies should be using the cheapest brand at any given time to protect our cash-strapped health service, which then also makes it difficult for pharmacies to offer their patients any continuity of a particular brand. 

Many of us did not know that even if our Oncologist specifies a particular brand – for instance if we request it due to intolerable side-effects – that it is actually our GP, as the person in primary care, who is responsible for our prescribing. Finally, some of us (hesitantly, because the focus of our group is the psychological impact of breast cancer, not politics) expressed concern about the possibility that Brexit may cause supply difficulties which in turn may mean that we may increasingly face being given different brands of generic than we are used to.

We would like to know why it is that different brands have different effects across individuals? Why it is that ingredients are different across brands? Our resounding conclusion was that this is an area where more research and information is needed.

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.

Weekly Discussion Summary ~ I'm Sorry

“I’m sorry.”

Why do so many of us feel the need to apologise for having breast cancer? 

This week in our discussion we thought about how much we find ourselves saying sorry for our situation and our needs.

Why do we say sorry for needing to practice self-care? For not being able to keep up with a hectic social life? For needing a little extra support at home or at work? 

Anyone would think that we got cancer on purpose, that somehow it’s our fault. 

We wonder if we're wasting the time of our medical team, being a nuisance. We apologise.

Many of us ask what we did wrong - did we drink too much, eat too much, stress too much? If we'd lived differently would we have escaped the disease? 

We reassure people around us when cancer is mentioned, telling them we're fine, OK, even when we're not. We play down our side effects, and do more than our fair share to make sure no-one thinks we're “using” our cancer diagnosis as an excuse. 

We don't voice our needs because we don't want to appear vulnerable, we don't want to hurt our loved ones by allowing our fears out into the open. We apologise if we want to talk about our cancer, feeling that others must be bored of it by now. 

Once we've had a breast cancer diagnosis, it's always there in the background, and, for those of us with secondary cancer it's right in the foreground, as treatment is ongoing. We don't want to be a burden so we tell our loved ones we are sorry for being ill. 

Naturally, we experience intense feelings of distress. We apologise for tears or outbursts. We apologise for not being on top of the world, for living life to the full. We feel guilty if we allow our sadness in, even more so if we dare to express it or let it get us down. 

I'm sorry to ask......(for a lift for the kids, for a bit of help with the shopping, for a listening ear, a hug.) 

I'm sorry......I'm always so tired, so forgetful, not up to going out today. 

I'm sorry.........that I look so scary with no hair, I'm sorry I can't wear skimpy tops and high heels anymore, I'm sorry I'm so fat and ugly. 

I'm sorry, boss, that I need to ask for reasonable adjustments in order to continue working for you. 

I'm sorry, dear partner, that our intimate relationship is affected by how I feel about my appearance and by the physical changes in my body. 

I'm sorry kids, but mummy can't take you to the park today because I need to rest. 

Self-care becomes a critical task to avoid collapse, and apologising for it all the time can spiral us down into feeling very low and depressed, and it can be self-destructive. 

We say sorry when we break the news of our diagnosis, we're sorry to be the bringers of bad news and sorry for our families and friends who now have to worry about us.  We're sorry that our treatment means activities are put on hold, work may have to manage without us, holidays may be postponed.  Once we finish treatment we apologise for not being able to do everything we did before, as treatment will have changed us. Our energy levels and priorities may be different and we modify our lives accordingly. This is frustrating for many of us, because as we adapt, so others around us must fall in line to accommodate those changes. More guilt, more apologies.

Sometimes other people say hurtful things, such as suggesting that having breast cancer is lucky because it's a 'good cancer' to have. Some are dismissive, as if cancer is a bout of flu, we're better now, so how about we just get over it and on with it? This kind of attitude can be very upsetting. We try to counteract it in our minds, as logically we know that it isn't our fault we got ill, but so many of us feel we fall into victim mode, saying matter-of-factly that we are sorry for any inconvenience caused. 

Some of us have learned not to start every sentence with “I'm sorry.” We've started to accept that we can't control everything and everyone. We do our best and we shouldn't ever apologise for that. 

Perhaps we should try different vocabulary, maybe saying 'I'm sad I can't join you for that day out in the city but my energy levels just won't support it'. This has a different feel. Some of us are learning to accept that cancer ‘chose’ us and we can't control its spread and that's that. Cancer doesn't discriminate, we didn't ask it along for the ride. We accept we may feel sad, angry, fed up. We understand that the only thing we have control over is how we react and behave in response to what happens to us. 

A good tip is to notice ourselves saying sorry, perhaps to count to 10 before we apologise. We could imagine what we might say to our best friend if she were going through the same thing: would we blame her and expect her to apologise? 

No, we wouldn't, in fact we'd be more likely to offer tea, cake and a big hug!  

Our need to apologise comes from inside us, not from others, and we can help ourselves by realising that our loved ones want to help us to be as well and happy as can be. Our apologies don't help us to feel better, in fact they reinforce our vulnerability and lack of self-worth. They can become so habitual that we start saying sorry for existing. 

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