Weekly Discussion Summary ~ Cancer Related Fatigue

“Sometimes fatigue hits us like a brick wall, without warning, meaning we just have to stop and rest.”

Cancer related fatigue is a well documented side effect of treatment. What's not so commonly known, except by those struggling with it, is that fatigue can continue to affect us for many years. It also appears to be less commonly known that post cancer fatigue can severely affect us, as many of us described a lack of understanding from our family and friends. For some of us, this lack of recognition was just as hard as the fatigue itself so it was a massive relief to share and to know we are not alone. 

We are all women diagnosed with primary or secondary breast cancer. For women living with secondary breast cancer, ongoing treatments can lead to fatigue becoming a permanent fixture. However, this can be true for those of us living with primary breast cancer or lymphodema too. Many of us spoke about our shock at finding that we were exhausted, perhaps exactly at the time we, and those around us, might be expecting our normal energy levels to return as our active treatment is complete. 

Fatigue may be debilitating to the extent that we can no longer hold down full-time jobs, and some of us have to give up work all together.  Some do this happily and find a more manageable pace of life. Others are frustrated that they can't work, and for many, work is part of our self-esteem and losing it is a huge blow. 

At the other end of the spectrum many women continue to live full lives which from the outside appear normal. Our struggle against fatigue becomes a daily battle requiring a delicate balancing act. For some, this means we give all our energy to our work, leaving nothing for family and ourselves. For others this means a pattern of boom and crash, where periods of activity are followed by a need to rest and recover. This may be on a daily basis or in chunks. 

Fatigue is not just physical, it also tires us mentally and cognitively. The brain takes the energy it needs to get by, and this may leave it depleted, which in turn leads to mental exhaustion. When we are exhausted we may feel low, possibly depressed, and this becomes a vicious circle fuelling the fatigue.

Exercise was widely reported as being helpful in combating fatigue, with everything from swimming to running to walking to dancing to yoga to aqua aerobics to martial arts proving useful. Moving our bodies in a way which is enjoyable can be beneficial, and research into this field substantiates our experiences. Fatigue invites us to rest, but alongside sensible exercise. However, exercise is not a quick fix for many of us, and needs to be graded and gradual to avoid a boom and bust, or further episodes of illness. If exercise can be supervised to ensure levels are controlled and to reduce the risk of overdoing the activity, it seems more effective. Some of us don't exercise formally but incorporate physical activity into our routine by walking everywhere and others have active jobs. 

Some of us spoke of worsening fatigue after the end of treatment, with common colds or stress causing us to flounder.  A few of us have extreme fatigue with burning nerve and muscle pain. It is tempting to be very active on days when we feel good, but pacing ourselves is so important in order to avoid overdoing things on good days and subsequently crashing. Sometimes fatigue hits us like a brick wall, without warning, meaning we just have to stop and rest. 

Fatigue and sleep are awkward bedfellows, with each affecting the other adversely. We spoke about our problems sleeping, which may have many causes, leading to extreme daytime tiredness. The one thing we crave is sleep, and it eludes us. 

Counselling has been a help for some of us, helping us to devise coping strategies. Stopping to listen to our bodies, and pausing to breathe deeply, are useful too. Acupuncture and other complimentary therapies are helpful for some. Fatigue management clinics exist in some areas but support is not widely available. Deep breathing, relaxation, meditation are all worth trying to improve our sleep. An app called 'Untire' was recommended as a useful.

A key theme is that other people don't understand our fatigue and expect us to be back to normal. It's hard to explain and people to respond by telling us that they are exhausted too! All we can do is try to be responsive to our needs and kind to ourselves, doing what we need to do even when those around us are not empathetic. 

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 Facebook page.

Weekly Discussion Summary ~ Our Strengths and Weaknesses

“Vulnerability and strength are two sides of the same coin: you cannot have one without the other.”

This week, we listed three strengths and two weaknesses in our discussion, including the ways we might address our weaknesses.

Many of us found it easier to focus on  our weaknesses, perhaps indicating a general negative bias. We have all been diagnosed with breast cancer, some of us primary breast cancer, some of us with recurrences, and some of us secondary breast cancer. Our discussion confirmed that our diagnosis changes us and we talked about lessons learned, weaknesses turned into strengths and vulnerabilities transformed into resilience. We have faced our mortality, undergone harsh treatments, our bodies and minds irrevocably changed. Yes, we have suffered, but we have also grown, found strength in sharing, overcoming, enduring. 

Many of us see ourselves as caring and kind, tenacious and determined.  We are good problem solvers and fiercely loyal to family and friends. We are generous, independent, smart, passionate and creative. We are conscientious and we never give up. 

We may come to appreciate the small, simple everyday things in life more, we may find we can let go of insignificant worries more easily. 

We see our weaknesses as often stemming from our sadness and our experience of loss. Inevitably in our group there is loss, as the reality of breast cancer is that women are robbed of their lives too soon. This can lead to feelings of guilt - why her, not me? and a sensitiveness that leads to holding on to deep fears and sadness rather than expressing our feelings. This is where a safe, confidential space to share (provided by our closed private group) can be so important. 

Many of us find it hard to put ourselves first, even though our need for self-care may be huge. Treatments and ongoing medication may leave us fatigued and with numerous side-effects that are difficult to explain to others, and so many of us battle on every day feeling low and tired. Many of us have demanding jobs, family responsibilities, caring roles, and so on, and today's society demands a lot from all of us.

It's hard to slow down and find time to look after ourselves in a world that values busyness. Self-compassion is a value we advocate in our group, but it seems that many of us find it extremely hard to practice it. By contrast, some of us are worried that our self-care is close to laziness and we are good at avoiding chores in the name of needing to rest! 

A few of us have given ourselves permission to be happy. So many of us see ourselves as responsible for everyone else's happiness, which of course we cannot control, and so we never rest because we cannot control how others feel. If we are to address this tendency, we must put ourselves first and attend to our needs before others - the well-known idea that we must put on our own oxygen mask on the failing plane before fitting others' masks. Sometimes we need all of our energy for ourselves, we may need to ask for help, we may need to listen to our bodies and treat ourselves with the kindness we show others. 

Resilience can come from acknowledging that it isn't what happens to us that matters, but how we react and what we can do about it. If we are wise and insightful, we can exploit our weaknesses and move our vulnerability towards strength via blending, melting and moulding. It is not easy and for many, our breast cancer diagnosis brings fatigue and low mood, perhaps depression. However if we can sit up and take notice of the moment, acknowledging the beauty and joy in the everyday and succumb to a craving for life, this can carry us forward. We may seek a bucket list of new and exciting experiences, we may look for quiet moments of joy. As Naz reminds us, vulnerability and strength are two sides of the same coin: you cannot have one without the other.

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 public Facebook page.

Weekly Discussion Summary ~ Impact on sexuality and sexual health

The impact of breast cancer on sexuality and sexual health is a taboo subject for many women.

Here at BRiC, we tackle the most painful and sensitive aspects of our experience of primary and secondary breast cancer. In this week’s discussion, we shared how our sex lives have been affected by breast cancer, for the most part in painful ways. 

For many of us, this was the first time we had shared our feelings and it became clear that a huge number of us are suffering in silence and have no idea where to turn for help.

Breast cancer fundamentally changes us, mind and body. We may lose our breast or breasts, we have scars, we may be unsymmetrical, we may have chosen or have been unable to have reconstruction. For many, breasts are powerfully associated with womanhood and sexuality. Is it any wonder that our sense of ourselves as sexual beings is profoundly altered?

Our confidence and enjoyment of our bodies is shattered by brutal treatments like radiotherapy and chemotherapy, but we also contend with early, severe and prolonged menopausal symptoms as a result of hormonal treatment. These effects often worsen and are impacting us years after the end of so-called active treatment - many of us shared that we experienced a loss of libido, others talked about vaginal dryness which can make intercourse painful. Some of us shared that intimacy is the time when we most miss our breasts, maybe we miss the sensations we used to experience, maybe we miss our previous abandon, maybe we feel inhibited or undesirable as a result of our weight gain. Though our individual concerns varied, our feelings were startlingly similar:

Some of us fear intimacy, we avoid it.
Some of us crave closeness and intimacy but are afraid to initiate it.
Some of us feel single even when we are in what appear on the outside to be ‘happy’ relationships.
Some of us are single and fear having to build a relationship with a new partner and so we choose to remain on our own. 
Some of our partners have walked away from us, leaving us abandoned and alone. 
A few of us experience strong sexual feelings which our partners do not seem to reciprocate.

Very few of us had received any medical or psychological support for these issues. Sex is not mentioned or talked about when we ask about the side effects of treatment. No help is offered. 

We often have no one to confide in and we especially don’t want to talk to our partners - we fear their responses or rejection. We may drift into a sexless relationship, trying to pretend to ourselves that it doesn't matter while we silently die inside. So many of us who had enjoyed sex pre-diagnosis found our womanhood stripped from us by cancer.  

We worry that without sex, our partners may seek it elsewhere. Some of us have sex for our partner's sake but we don't enjoy it. For some, our partners are our carers and are no longer our lovers. Then, comes the expectation for a return to normal only to find loss.

Satisfying sexual activity was experienced by a few of us. We shared that trust, communication and sharing vulnerability and experiencing intimacy in new ways had helped. But the few of us who shared our success stories were hugely outnumbered by those with ongoing difficulties.

What can we do?

Breast Cancer Care have produced a good leaflet about sex and breast cancer treatment https://www.breastcancercare.org.uk/…/sex-breast-cancer-tre…
. 

This blog by the breast surgeon Liz O’Riordan, herself diagnosed with breast cancer, also offers lots of advice 
http://liz.oriordan.co.uk/BreastCancerBlog_files/lets-talk-about-sex.html

Her suggestion is to have a “box of tricks” including a good lubricant. Some are available on prescription so we don’t need to pay for them. 

YES is a highly recommended water-based product which can be used as an internal moisturiser to help relieve dryness and irritation and works better than silicone-based lubricants. 

Another popular product is SYLK. 

We also know that coconut oil or Vitamin E oil can be helpful. 

A small vibrator can help with feeling dry and tight and it can be worth considering dilators which can help make sex less painful.

In her blog, Liz O’Riordan explains that oncology appears to be reviewing its position about the use of topical vaginal oestrogen for breast cancer patients - available for women who experience this symptom as part of their menopause - she says that one school of thought was that if women used them, the tiny amount of oestrogen that they would absorb might increase the risk of the cancer coming back. However, small trials have shown no obvious increase risk in recurrence for women taking Tamoxifen. This is important because it is a very effective treatment and some of our members shared that this had transformed their quality of life. It must be a decision made by each woman and her doctors based on her individual situation.

A good shop that comes highly recommended by a psychosexual counsellor is: 

“Sh! is a sex shop truly worth shouting about. When it opened in 1992, Sh! was the first ever ‘women only’ erotic boutique, designed to give ladies a welcoming, safe place to shop for intimate items and get sound sexual advice.”

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 message via our Public Facebook Page.

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/