Weekly Discussion Summary ~ Tamoxifen

What is the effect of Tamoxifen (and endocrine therapy) on cognitive function?

This question, asked by one of our members, formed the basis for our weekly discussion.

Although we’ve previously looked at ‘Chemo-brain’, this was our first discussion about the varied effects of endocrine therapy, in particular Tamoxifen, on our cognitive function.

Tamoxifen is described as ‘well tolerated’, particularly in comparison to harsher treatments like chemotherapy and radiotherapy. While there is no doubt about its efficacy as a treatment for hormonal breast cancer, our members, women with primary and secondary breast cancer reported a wide range of debilitating physical side effects including joint pain, disturbed sleep, fatigue, hot flushes and sexual dysfunction.

Some of us also reported that these effects increased or decreased depending on the brand of Tamoxifen we take.

In terms of the effects on our cognitive function, we shared the following symptoms: a foggy brain, forgetfulness, poor concentration, lapses in attention; many of us experience slow processing speed and difficulties in relation to retaining information, particularly our short-term memory, our '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 mistakes are small and we laugh at ourselves, but more often our confidence gets undermined and we worry about our ability to function, that we might be seen as incompetent at work or that we are poor company.

How we asked, does Tamoxifen work, and how does it impact on the brain?

Naz explained that Tamoxifen inhibits the absorption of estrogen to cells that would otherwise be nourished by this hormone, especially brain cells which need estrogen for healthy cognitive functioning.

She told us that there is evidence that frontal and temporal structures of the brain are affected most. These areas are involved in everyday memory, our executive functions that enable us to ignore distractions to focus, switch between tasks and update information in working memory.

Tamoxifen, Naz explained, has also been known to interrupt “neurogenesis” which refers to the process by which the brain forms new neural connections and re-generates itself.

Naz told us that overall, research conveyed the simple message that Tamoxifen can contribute to impaired cognitive function. While the evidence can be mixed at times, the general story conveys a similar message in both post and pre-menopausal women.

Aromatase Inhibitors have been compared in their effects on the brain to Tamoxifen and the effects are similar, though the general idea is that they have less of an impact than Tamoxifen.

Naz told us that the longitudinal effects of Tamoxifen are unknown. Although some women report their cognitive function improves over time, this needs to be accompanied by systematic changes in the brain that at the moment have not been substantiated. Changes in cognitive functioning should be explained by changes in the brain that support those observations.

We know that the brain shows under-activity in areas that support healthy cognitive functioning when active treatment ends, but then at times it has shown over-activity to recruit resources that are needed to support daily functioning. Ultimately, more research is needed to see what we can do to keep the effects of Tamoxifen and/or Aromatose Inhibitors on cognitive function to a minimum.

We may not be able to reverse their effects, but we can boost our brain’s capacity to protect itself against the extra possible effects of Tamoxifen.

If you are a woman living in the UK and you have a diagnosis of breast cancer, you would be welcome to join our private group. Please message us via our facebook page https://www.facebook.com/resilienceinbreastcancer/

Weekly Discussion Summary - I Am Not My Cancer

I Am Not My Cancer

No one wants to feel defined by cancer. But, the harsh reality is that dealing with cancer and it’s effects can feel like a full-time job. With endless scans, blood tests and meetings with Consultants, often at different hospitals, we can spend hours and hours in waiting rooms and when we are not in hospital, we are on the phone coordinating aspects of our treatment. Added to this is the intense fear and uncertainty we experience as we try to get to grips with the details of our diagnosis and treatment. Is it any wonder then that on Planet Cancer the very core of identity feels under threat?

Maybe we feel we are not the mother or partner we want to be. Maybe we can no longer support others and we have to allow others to care for us. Maybe we can’t work, exercise or enjoy the foods or drinks we used to. Maybe we fear that we are no longer the person we thought we were.

This week’s discussion was a powerful reminder that we are so much more than our cancer. By introducing ourselves without mentioning the ‘C word’ we reminded ourselves of our defining qualities, our likes and dislikes, our interests and the important roles that we continue to play, despite the adversity we face:

We are mothers, daughters, sisters, partners, friends and colleagues.

Some of us are fierce and passionate, others express their determination quietly. We watch clouds and listen to the sea; we ride horses and relish our beloved pets. We run, we walk, we cycle, we sail.

Some of us live to work, others work to live. Some of us travel the world, others are pilgrims of our souls. We meet royalty, get up on stage, we write poetry, we sing and we dance.

We are not our cancer.

If you are a woman living in the UK and you have a diagnosis of breast cancer, you would be welcome to join our private group. Please message us from our facebook page https://www.facebook.com/resilienceinbreastcancer/

Weekly Discussion Summary ~ Anger 3

Anger is like fire. It burns it all clean.*

In our weekly discussion, we talked about anger.

We tend to think of anger as a wild, dangerous emotion. A feeling to avoid. An emotion to suppress. But, Naz asked us to think about whether we could use our anger to build our resilience, to help ourselves and each other?

Our discussion, included women with primary or secondary breast cancer.

We are angry at the loss of control that cancer brings
Angry that it is unfair and we say 'why me?'
Angry that we witness so many dying
Angry so many are facing a poor prognosis
Angry there is so much inequality 
This may be me, it may be you
Angry at our helplessness
Angry at our powerlessness

We may be angry that we got cancer when we're healthy and fit
We may be angry when we are diagnosed just as life is going well
Or before we've had the chance to do what we'd planned
Or because it robbed us of the chance to have children
Or because we won’t see our children of our grandchildren grow up
Or because life doesn't let us off from other problems even though we have cancer

We may be angry that we are changed by cancer
Angry that we have lost our potential
Who we used to be has gone 
Angry when we fail to do everything we found easy before
Angry we are so tired

Our cancer makes us vulnerable 
Our vulnerability makes us fearful
And sometimes this means we fear any strong emotion
We are overwhelmed by the strength of our emotion
And so we hide it away, deny it, or kick it into touch.

If we let anger in
It might leave us wretched and wrung out and hopeless
And we are too afraid to let that happen
So we don't let ourselves be angry

We may be angry when people tell us that those of us who didn't have chemo are lucky
We may be angry because we look ok but feel so awful
Angry when people assume we are cured
Angry when people tell us that if we have to get cancer, 
Then breast cancer is the best one to get!

We may be angry at the state of the world
Angry about injustice
Angry about politics
Angry about balloons that harm innocent wildlife
Angry about big things, small things, everything, just so angry

Some of us experience a delayed reaction, feeling anger months or years afterwards.
Maybe we displace the emotion - we get angry with our mother-in-law or colleagues

A few of us prefer the cloak of acceptance 
Letting go of emotions that waste our energy

Whatever our position, we work towards resilience, healing 
And finding peace, not waging war with our bodies and minds
Cancer is not a battle
That we fight with our anger

We cannot change what has happened to us
We can channel our anger towards helping others
And towards helping ourselves

Anger can help us reach our goals
Anger can help us fight injustice 
Anger can help us to a achieve change
Anger can empower us
We can use it to build constructively
To drive us forward
To destroy what's not good for us
We can use it to cease tolerating people who treat us badly
Situations that don't serve us

Anger can make us productive
Anger can motivate us 
To take control of what we can influence and change
Anger, channelled well, can help us move forward

Anger is like fire. It burns it all clean.
*Maya Angelou

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

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

Weekly Discussion Summary ~ Crying

Tears are the words our hearts need to express.

Our discussion last week centred on crying: when we cry (and don’t cry), why we cry, what crying does for us.

For our members, women with primary or secondary breast cancer, this was a topic which led us to bring our attention to whether we cry a lot, occasionally or whether we have lost the ability to cry.

Numbness, we learned, or cutting off from painful emotions after trauma is a common response and many shared we had been unable to cry on diagnosis and during treatment. Others find tears come easily and we may then worry that we are embarrassing others when we cry in their presence.

The power of crying to heal is undisputed, however, it can feel counter-intuitive to cry when we are struggling and we acknowledged that there are times when it isn’t appropriate to cry – in social situations perhaps, or at work. Some of us prefer not to cry in front of our loved ones, while others feel it’s good to clear the air with a good cry and perhaps a comforting hug.

Many of us might have a really good cry, perhaps even months or even years after key events or experiences. If this happens, we may feel that at last we have unshed tears from deep in our past flowing freely and it can be hugely therapeutic.

Many of us shared that we desperately want to cry but we can’t. The need to cry is there but the tears just don’t come. We wondered if it’s possible to cry without tears? Maybe we feel pressure in the chest, a build up of emotion with nowhere to go. This can be very uncomfortable.

As children, some of us were told that it’s weak to cry. This can lead to unnecessary suffering because the need to cry is subconsciously suppressed due to our deeply ingrained beliefs.

If and when tears eventually come, it may be when we least expect them and at an inconvenient time. Some of us reported deliberately suppressing emotions, remaining detached from our feelings as a self-preservation coping mechanism. We fear that if we allow ourselves to cry, we may never stop.

Tears can convey different emotions – there are angry tears, sad ones, gentle ones, heart wrenching ones. Tears of grief, of sadness, of self-pity, of wretchedness. We cry for others, we cry for ourselves. We cry when we are happy too, tears of pride, of love, of joy. Any strong overwhelming emotion can lead to tears. Tears can be triggered by a piece of moving music or a poignant moment in a TV show, which may turn into a good, long cry. At other times we may feel the tears prickling behind our eyes but we hold them back, wipe them away, refuse to let them come.

We feel relief and calmness following a good cry, and it’s interesting how many of us cry in the shower to start the day – cleansing our body and mind at the same time.

The loss of a loved one may trigger unreleased tears, or perhaps an emotionally charged moment such as a Reiki session or a beautiful sunset.

Naz told us that if we can give ourselves permission to cry, there are many self-soothing benefits. We may feel relaxed, cleansed and relieved. Crying has a positive effect on our nervous system, releasing feel-good hormones that help us feel balanced. There’s a lot to be said for having a good cry, picking ourselves up afterwards and getting on with it, feeling more motivated and determined.

Tears can sometimes be a signal of having overdone things, a sign of fatigue, giving rise to a need to step back or rest. If we notice and listen, we can take better care of ourselves.

Crying isn't a sign of weakness and we should never be ashamed of our tears. If we allow ourselves to go with the flow of our bodies and minds, letting the tears come when they appear, then we can become more at one with the ebb and flow of our emotions. Taking the time to stop, breathe, feel, and cry if we want to, is a healthy way to be in tune with ourselves.

If you are a woman living in the UK and you have a diagnosis of breast cancer, you would be welcome to join our private group. Please message us via our facebook page https://www.facebook.com/resilienceinbreastcancer/ 

Weekly Discussion Summary ~ Thoughts and feelings that we are helpless

“We need to remember to look after the person inside of us who was battered through treatment. She needs us, our help, and our affection. We owe this to ourselves and to her. “

If I’m going to die – what’s the point in living a healthy life? How can we feel self-destructive when our strongest desire is to survive? How can we lose compassion towards ourselves when we have - in an evolutionary sense – such strong instincts to survive?

These were the challenging questions we asked ourselves in our weekly discussion: Naz told us that research shows that the biggest contributor to depression are thoughts and feelings that we are helpless, hopeless, and have little or no control over the ‘future’.

Even though we all ‘know’ that we will all die one day, we live with the assumption that we are immortal. When we are diagnosed with a life threatening disease, this assumption comes crashing down. When we are given a timeline, however fuzzy or concrete, our visions shorten. We feel there is little to anticipate, we have to come to terms with our awareness of ourselves as fixed entities, with little control.

These thoughts and feelings, Naz told us, are normal. But this doesn’t mean that holding such a vision is constructive or helpful. When we are diagnosed with breast cancer, we experience post-traumatic stress which constitutes a huge element of depressive cognitions.

It is important to hold in mind that while facing these mental and psychological challenges, we are undergoing exhausting and demanding treatments which leave us with little or no reserves to think, let alone consider how we can help ourselves, how we can love and protect ourselves. We live with an agonising pain that we cannot put into words. Is it any wonder that we cope by emotionally numbing or cutting-off from it?

In our heartfelt discussion, including women with primary and secondary breast cancer, we shared the impact of our diagnosis on our self-esteem. Our doubts if we are worth the effort; we berate ourselves and our ‘internal voice’ criticises us, telling us we are ‘damaged goods’, we have already had/have cancer so what is the point? Some of us shared how much we sometimes feel we want to just disappear. We even wonder if it might have been better or easier if the cancer had taken us because the physical and psychological pain feels so unbearable. This in turns leads to terrible feelings of guilt and shame.

Naz told us that it’s important to remember that we have every right to feel and think this way. In health, she said, there is something called ‘blind optimism’. To be blindly optimistic is a healthy way to be in our condition. Our belief system has a huge role to play in our well-being, and by being blindly loving towards ourselves, protecting ourselves – even though we feel out of control. Nourishing ourselves. We are special. We’ve been to hell and back. We can try and do the things that make us feel better (not only in the short term, if we think that we only have short term), but longer term too.

Self-destructive behaviour, while understandable, has the biggest impact on our self-esteem, self-confidence, and does not make us feel good about ourselves. The truth is that we don’t know how long we have left, one day, one month, one year? What we DO know is that we can learn and find the tools to help ourselves to cope and to feel better within this limitation.

We need to remember to look after the person inside of us who was battered through treatment. She needs us, our help, and our affection. We owe this to ourselves and to her.

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

Weekly Discussion Summary ~ What lifts our spirits?

What lifts our spirits? What keeps us going? How do we maintain our mental and emotional well-being?

These were the questions we asked ourselves in our weekly discussion, our responses - as you can see - were rich and varied, reflecting our diverse personalities and interests.

In introducing the discussion, Naz told us about the important role played by the amygdala, one of the oldest parts of our brains, evolutionary speaking, which she said has a huge role to play in how and if we pay attention to negative and positive things, as well as the way we interpret things.

Naz explained that the impact of positive activity and interests, even if little and everyday things, can be huge on the brain. The brain learns to feel rewarded with the things that ‘lift’ us, the things that make us feel good about ourselves. This might be the effect of a walk in the park, riding our horse, laughing with our children, a hot bubble bath, a candle we light, a nice cup of tea or coffee, or buying ourselves a ‘lipstick’. These are the things that make us squeeze ourselves with immense levels of joy. Naz told us that as there is no hierarchy for pleasure centres in the brain, it is what we make of and how we interpret things, and how we squeeze out the goodness in the things that matter.

Taking this further, we can build, we can gain insights we can gain, and the resilience. The activity of the amygdala in such re-thinking strategies can be phenomenal and the impact on the brain is huge. When the brain feels rewarded, it communicates rewardingly to the body which can regulate our hormonal and motor systems.

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 ~ Lack of psychological support after diagnosis

"There is no guidance, no help, and crucially no psychological support. It feels as though we are thrown out of a plane with a parachute that we don't know how to open, with no instructions."

In our weekly discussion, timed to coincide with World Mental Health Day on 10th October 2018, we shared our experiences about the lack of psychological support after a diagnosis of primary or secondary breast cancer.

The psychological and emotional toll of a breast cancer diagnosis is a heavy one. It is a traumatic event that affects our mental health as well as our bodies. Few of us emerge psychologically unscathed, even when the diagnosis and treatment appears to have been successful. Our fear of recurrence (for women with primary breast cancer) or spread (for women with secondary breast cancer) is real.

At the end of our active treatment, we are told to get on and live our lives. Many of us don't know how to, we have forgotten. There is no guidance, no help, and crucially no psychological support. It feels as though we are thrown out of a plane with a parachute that we don't know how to open, with no instructions.

Some of us have been lucky enough to find counselling which helps us to process our experiences, others have attended a course that helps us with knowledge. We may find an on-line support group such as ours, where we can ask questions and most importantly, find others who are going through the same experiences. We learn from those who are emerging into their lives again, tentatively and often harbouring great sadness.

Those of us with secondary diagnoses described how psychological support seems even more sparse. Private counselling is an option that few of us can afford. Hospices, in some areas, can offer support but their resources are also stretched. The value of groups such as BRiC and others, some of which are specifically aimed at women with secondary breast cancer should not be underestimated.

We reported feeling cast adrift at the end of treatment. Some hospitals offer regular physical checks, others discharge patients at the end of treatment and provide annual mammograms only for a number of years, usually five. We are then back on the regular screening programme. Many of us were exhausted at the end of treatment, which can last many months, even years, and is gruelling. 

Yet we are expected to get back to normal, to pick up our jobs, our lives, as if nothing has happened. This just isn't possible in most cases. We talked of our isolation, our anxiety, our depression, having no-one to talk to as friends and family view us as cured; they can't understand the severe fatigue, the side effects of ongoing medication, the loss of self-confidence, the fear and vulnerability.

There is valuable support offered by Cancer Centres like Maggie's and the Haven but this is dependent on where we live and can feel like a postcode lottery. Some provide HOPE or Moving Forward courses, and some providing free counselling. These do have their place but are limited in scope. The courses tend to provide information about living a healthy lifestyle post cancer, and the counselling may be so focused on the cancer that the rest of our lives is ignored, whereas a holistic approach may be the most beneficial. The timing of the offerings is also crucial - some of us are ready to process the trauma sooner than others.

Why is the body treated so comprehensively while the mind is ignored? Why does the medical profession seem to believe that we are OK once active treatment has finished? Why is it that any help beyond the physical is provided by the voluntary sector or by charities? As Naz described, we show NORMAL reactions to a set of ABNORMAL effects following the trauma that is breast cancer, and these continue well beyond the treatment suite, perhaps for the rest of our lives.

The lack of effective psychological support following her breast cancer diagnosis led Naz to set up BRiC. Our group is a safe space where can express our fears, and support one another in a psychotherapeutic way. It is so important for us to know that we are not alone.

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 the public page 
https://www.facebook.com/resilienceinbreastcancer/