Weekly Discussion Summary ~ Financial Impact of Cancer

This week our discussion explored the financial impact of cancer.

Cancer causes significant financial hardship and worry about finances adds to the sense of threat and uncertainty we feel when we are diagnosed with breast cancer - how will we be able to support ourselves and our families? We feel helpless and vulnerable. Cancer results in a loss of earnings, for very many of us who are unable to work. Increased heating and food costs as well as frequent visits to hospital - sometimes over long distances - are just a few of the examples of the other ways that cancer causes additional costs at a time when we have less income. With increasing rates in diagnosis of breast cancer, and amongst women of working age, we are at high risk of financial distress and adversity.

Cancer charities like Macmillan and Maggie's can be great, and many of us had relied on help and support to access appropriate benefits, a temporary reduction in household bills or mortgage repayments. Not all of us had positive experiences though, and some of us had been poorly advised, had benefit applications rejected and had to go through an appeals process, or had poor experiences with our banks and building societies.

Even those with more positive experiences felt that the focus tended to be on short term financial help and advice during treatment. But what about the longer term?

For those of us with primary breast cancer, the trajectory of ‘recovery’ isn’t linear and we continue to take our cancer ‘effects’ forward with us. Post traumatic stress symptoms can linger for a long time after diagnosis. With threats to our self-esteem and self-confidence, the variability in our ‘recovery’ and our change in priorities due to the uncertainty we face, we remain at a disadvantage and continue to be at a higher risk of long term financial insecurity. Fatigue is another big factor as at times even if we want to continue what we love doing, we can’t, and we have to take a step back.

Those of us with secondary breast cancer described how financial uncertainty caused additional stress and worry which impacted on both our physical and emotional well-being and our ability to pursue our goals, especially for those who had been forced to give up much-loved careers. Although those who could work part-time (depending on their role and the support available) shared how important this was in terms of finances, many felt that work was just not something they could contemplate, especially if they were on an intensive treatment plan which might require daily appointments at the hospital.

Some amazing entrepreneurial suggestions were put forward about ways to earn money but very many of us simply felt we did not have the energy to invest in anything other than trying to keep up with our usual routines and staying as well as we could.

Our discussion highlighted that being able to remain in work could be very beneficial, allowing normality and earnings to be maintained. But this comes at a price, we can feel exhausted if we can't take time off and we need to manage our energy and the expectations of those around us. A few of us had critical illness cover and income protection which had been an enormous help, but it's important to check the small print to check the limits of cover.

Being able to access to advice from knowledgeable and informed advisers, a reduction in outgoings and support from our families were just some of the factors which helped to increase our resilience. Those who were younger, single parents, carers, students, or had multiple health conditions appeared to face considerable adversity. It was clear that the challenges continued in the longer term - we have debts to re-pay, we change or give up careers, we don't pursue promotion, we can find it difficult (or even impossible) to get mortgages and travel insurance costs are high. We continue to worry about what the future holds and how the financial strain will affect us longer term.

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 ~ Partner's Emotions and Anxieties

Our partner's emotions and anxieties, through treatment and beyond

This week our discussion focused on our partners and their fears and worries about us when we are diagnosed with breast cancer. 

There is very little research looking at the impact of a breast cancer diagnosis on the partner of the woman diagnosed. This is both surprising and disappointing, as what little does exist suggests that the effect on a partner's feelings of fear and uncertainty is huge. The availability of tailored specific support for partners is alarmingly absent.

Just as we are each unique in our experience of breast cancer, so our partners will have different ways of coping. We may influence this, depending on how much we choose to involve them in the nitty gritty of our treatment. Our experience may also depend on how strong the relationship is at the time of diagnosis, how openly we are able to communicate and on personality and coping styles of both of us.

Female partners may have additional vulnerability as their fears for their own health may be tangled up with worry for their partner: of course, men do get breast cancer but it isn't as common. Women with primary and secondary breast cancer are members of our group, and for those with a secondary diagnosis, for whom treatment is lifelong, our partner's feelings and fears may be even more complex than for those with a primary diagnosis where an end date for treatment will be a future goal. The period at the end of treatment is a crucial point for women with a primary diagnosis as partners expect and want things to return to 'normal', to be as they were before the diagnosis. This return to how things were isn't going to happen and it can cause rifts in even the strongest of relationships.

Some partnerships don't survive a breast cancer diagnosis. Some women describe partners becoming distant or troubled. Others describe their partner as their rock and experience a deepening of their closeness. All the women who took part in our discussion talked about being concerned for their partners, worrying about the effect of their breast cancer on their partner's well-being. Some try to protect their partners by not sharing everything with them, others want every detail out in the open.

Many women described their partner as the stereotypical male, reluctant or unable to talk about their feelings, and spoke of many of them using hobbies to escape and distract themselves. Many women praised their partners for their ability to just be there for them, with a squeeze of the hand or a hug backing up their matter-of-fact attitude and practical assistance.

Counselling is of course available privately, but this only suits those who like to talk. Perhaps a support group in a pub setting, designed to help men bond and share experiences, to realise that they are not alone, might be helpful. For many women, there is a recognition that our partners may benefit from some kind of support intervention, but we weren't at all sure what that would be.

If you are a woman with a breast cancer diagnosis and you live in the UK, you are welcome to join our private group. Please send a private message to our public centre page here and we will get back to you.

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Research at BRiC ~ Training Cognitive Control to Reduce Emotional Vulnerability in Breast Cancer

Research at BRiC

Please give a huge cheer for the brilliant and beautiful Jessica Swainston, seen here on the right with BRiC's head, Prof Naz Derakshan! 

CONGRATULATIONS on the recent publication of their paper, "Training Cognitive Control to Reduce Emotional Vulnerability in Breast Cancer" in Psycho-oncology.

Huge and heart-felt thanks to all those participants who took part in the intervention and for helping us build our research programme on resilience.

Here’s a preview: https://www.ncbi.nlm.nih.gov/pubmed/29631328

The full text will be available on line soon so watch this space!

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Weekly Discussion Summary ~ Happiness

'There is a crack, a crack in everything. That's how the light gets in.' Leonard Cohen.

Happiness.

Hard to define, so elusive, what is happiness and how can we find it?

How do we know when we are happy?

Our weekly discussion looked at being happy in the context of our breast cancer diagnosis.

Happiness may be fleeting, but it can appear at unexpected moments as an appreciation of the small simple things in life. Often, unhappiness is easier to conceptualise than happiness: we know what makes us miserable and sad but working out what makes us happy isn't so easy.

Perhaps happiness comes with embracing whatever is happening, not wishing things were different, and not trying to isolate or compartmentalise our emotions. Our experience often falls short of our expectations, and our ability as human beings to ruminate on the past, and to wish our lives away hoping and dreaming for a particular future, may contribute to feelings of discontentment and disappointment.

As we talked about happiness, we struggled with definitions and how happiness relates to contentment and joy. Some of us were able to list things that we enjoy, that make us happy. Many of us find we no longer fret about issues that used to bug us, and we appreciate things more. We have happy times, happy moments, happy events, but we aren’t sure whether this makes us generally happy. Some women mourned the loss of happiness, which they felt had disappeared following their breast cancer diagnosis. Others felt ashamed that they don’t feel happy, when surviving cancer ‘should’ lead them to make the most of every moment of every day. Many agreed that happiness isn’t something that can exist in every moment, but that finding something to be happy about every day is usually possible. Gratitude and appreciation help. For many, their moments of happiness are clouded with negative feelings – fear, sadness, disappointment, anger. Happiness is spoiled forever because of their diagnosis.

We may have a heightened sense of gratitude, and perhaps we feel everything more intensely because of our experience. We’d still prefer never to have had cancer though.

A cancer diagnosis is devastating in so many ways, and for lots of us, we now believe that when things are going well we are lining ourselves up for something to go wrong sooner or later. This may be because our cancer diagnosis came as such a shock. It is always traumatic, whatever our age or circumstances. It always interrupts our lives, as treatment necessarily makes us stop. When we return, we are different. This is difficult to embrace and so happiness eludes us. Many women expressed a sense of having lost that carefree happiness they once had, but if we are lucky it can be replaced with a sense of inner peace, with deeper relationships (for some of us, facing our mortality makes us braver in telling those we love how much we love and appreciate them) and an acceptance that if our time on earth is to be cut short, then we may as well get on with living our lives our way.

Living in harmony with our values, and having a strong sense of who we are, being true to ourselves, appears to be key to happiness for many women. Perhaps happiness is linked with who we are and what we strive for, our goals, and having a life with purpose and meaning. Our society has certain expectations these days and for many women, cancer means they want or have to step off the treadmill of modern life and find a new way of living. This is particularly true of women with a secondary diagnosis, for whom treatment is lifelong. Our group is for members with both secondary and primary diagnoses. For our secondary women, the promise of tomorrow is even more fragile and they may become more adept at living in the moment. Gone are the thoughts of ‘I’ll be happy when’ (I'm thinner, I have a new car, we go on holiday, I get a new job,…’) and these are replaced with finding happy moments to treasure each and every day. Long term planning is no longer an option and many happy times are tinged with sadness. Finding happiness for these women is hard work, but they do find it, every day.

If each of us can find our own way to be happy, and not worry about what others expect of us or what society dictates, then we may have a chance at living happily. This could mean slowing down, or packing in as much as possible. It may mean family, travel, meaningful work, helping others. Perhaps resilience means coping with adversity with a smile, and that smile leads to happy times. We all acknowledge that in order to feel happy we also have to feel sad, and all of us know how it feels to be sad. This gives us a great capacity for joy, and ultimately for happiness. As one of our women succinctly put it, we are happy to be alive!

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 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 ~ Coping with Fatigue

"Many people confuse 'fatigue' with 'tiredness' but it's not the same. Fatigue is the invisible legacy of breast cancer."

Our discussion this week focused on fatigue, a significant side effect of many of the treatments of breast cancer. Fatigue affects our ability to work, relationships, family life and our social lives. Many of us described only just being able to keep our head above water in terms of doing the essentials in our lives, with no energy left for ourselves. Others shared that they have to make daily choices - a game with the children or making dinner from scratch - they can’t manage both. Some women give up work, others reduce their hours, but not everyone can.

Our discussion included women with primary and secondary breast cancer. For the latter, ongoing treatment means their fatigue is continuous and may go in cycles alongside treatment regimes which will never finish.

For many, the support they received from family and friends whilst going through active treatment falls away once treatment ends, but fatigue remains and can worsen. Many of us felt unable to explain our fatigue to others and find family and friends are impatient with our need to rest, change or cancel plans or not join in as much as we used to. We often look well but fatigue is invisible and can continue for many years and is sometimes overwhelming.

The fatigue we experience isn’t just general tiredness, it can be debilitating and is not resolved by a good night’s sleep. Fatigue affects our ability to concentrate and our mood. Many reported feeling frustrated at being unable to focus, and irritable with those close to them, tearful and over-emotional. Fatigue is exacerbated by the fact we find it difficult to get a good night’s sleep, whether disturbed by menopausal hot flushes, anxiety or the fact that being overtired can in itself inhibit restful sleep. A minor illness like a cold can knock us for six. Some of us experience pain (that in itself is tiring) along with side effects of pain alleviating medication.

We shared tips on coping with fatigue and a few common themes emerged, one of them being extra rest. Planning ahead to ensure that rest time can be fitted around other activities is important, and we often have to prioritise rest time over and above socialising. This can make it hard to keep up with 'normal' activities and leads us to feel isolated, especially as we feel people expect us to 'get back to normal.'

We heard that pacing and planning to manage energy can be key to avoid a 'boom and bust cycle' - you wake up feeling good, determined to make the most of your energy, you rush around doing all those things you've been putting off... and then crash. You're exhausted. It can help to plan in a rest day before and after a big day out, a party or family activity, or ensuring a quiet weekend follows a busy period at work. Those lucky enough can schedule an afternoon nap, or rest, others catch up on sleep at weekends. Some go to bed early in the evening, which for those at work may make us feel like we have no life.

Exercise can also help (though it can be hard to feel like exercising). Many described their strength and stamina improving by gradual increases in activity. Others described being energised by exercise, for some that means a walk round the block in their lunch hour, for others a dance or yoga class or perhaps a park run.

A diet that’s low in sugar can help, because it reduces fluctuations in energy, with vitamin supplements, as supported by their oncologist or GP, were also recommended by a number of women.

Learning to delegate and to accept that we can't do everything - at home or work. Cut corners and take short cuts, ask older children and partners to help.

Another suggestion is to take up a quiet absorbing hobby, crafting perhaps, or knitting and crocheting. Meditation and mindfulness also helped some of us to feel more at peace and less exhausted, and lowering anxiety levels helps us to sleep better at night.

So many of us are mourning our pre-cancer energy levels, our pre-cancer fitness levels and cognitive sharpness. Fatigue affects both body and mind, and adjusting to new levels and the corresponding lowering of expectations takes a lot of hard work. This, of course, contributes to fatigue, and many of us struggle with our own expectations as well as the expectations of others.

We were comforted by the fact that we realised we are not alone, and, knowing that fatigue is very commonly experienced following a breast cancer diagnosis.

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/

Weekly Discussion Summary ~ Managing Physical Activity

This week our discussion explored the different ways we exercise and manage physical activity while managing treatment and its side-effects.

Naz explained that research has repeatedly shown that exercising brings huge benefits - it enhances our mood and can make us feel better about ourselves; it also seems to have cognitive, physical, and longer term psychological benefits (e.g. for managing acute depression and anxiety). Naz told us that more recently, exercise has be shown to increase neuro-plasticity - the way our brain neural connections can grow and increase processing efficiency - what Naz called, 'a healthier brain'.

When we think of 'exercise' a whole range of activities come to mind, yoga, Nordic walking, Zumba, Fitbit, to name but a few. Our discussion, which included women with primary and secondary breast cancer, highlighted that the way we interpreted 'physical fitness' and 'physical' activity varied considerably, some of us are serious runners, swimmers and cyclists for instance, whereas others, while less 'athletic', were no less active, perhaps riding, or gardening, for instance. We realised that some exercises appeal to us more than others, depending on interest, energy levels and past history of physical activity. But, a number of us shared that either we did not enjoy physical pursuits, or, we felt that our struggles with fatigue, pain or other side-effects were just too huge a barrier to overcome.

So what can we do to help ourselves to increase our activity levels and fitness?

Firstly, we need to make the decision; our mindset is everything. Plan and stay focused.

Doing something small (however small), everyday, is absolutely better than doing nothing. Whatever our activity levels, its intensity and duration can be changed to suit us.

Walking is a great weight bearing exercise and doing a ten minute walk a few times a week is a good start. Even better, make it a brisk walk. Likewise, swinging the arms or including some inclines will add in a little more challenge.

Psychologically, it's important not to fall into the following traps:

1. Beating ourselves up and feeling stressed if we don't attain the ‘targets’ we set ourselves.

2. Comparing ourselves unfavourably with our peers and what others achieve.

3. Comparing what we can do now with what we used to be able to do and feeling frustrated.

4. Giving ourselves a hard time if we 'crash' (as a result of illness, fatigue, low mood, stress) and when we feel like we have to start again.

5. We should try not to undermine our own abilities and accept that what works for us may not work for another - we are all different.

6. If we can, we should try to set ourselves small, challenging increments in our exercise (whatever that is) and push the boundaries of our comfort zone. This will aid us in building our strength and stamina.

Although there is a lot of advice for the general population about how to improve fitness and activity levels, it's not targeted enough for those of us struggling with the physical and psychological effects of breast cancer and its treatment. We need help - tailored advice and support adapted to suit our specific needs.

Although Naz advises caution on the findings, here's an interesting link to the NHS on exercise: https://www.nhs.uk/…/exercise-most-proven-method-to-preven…/

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