Saturday, 11 May 2019

Weekly Discussion Summary ~ Fatigue

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“Fatigue, we agreed, is not the same as being tired.”

In this week’s discussion we explored fatigue, a common and debilitating side-effect of treatments for primary and secondary breast cancer.  

Fatigue, we agreed, is not the same as being tired. It’s a relentless feeling of living in a barrel of treacle, typified by feelings of exhaustion and burnout - physical and mental. Fatigue tells us we are muddling through on empty, our resources depleted, our energy all used up. Sleep and rest does not replenish us. Fatigue may be sudden, constant, or come in waves. 

Coping with fatigue is difficult. Many of us find it hard to acknowledge that we can no longer do as much.  For some fatigue is mild, for others it’s severe. Fatigue hits some of us now and again and is a minor irritation. It can stop others from working, socialising and they feel constantly unwell under its weight.

Insomnia seems a common feature of fatigue. As we become overtired, we worry about not sleeping as we lie awake. We worry that we won’t be able to work, we worry that our families will see us as shirkers, we worry that friends will get fed up with us for turning down invitations or leaving the party early. 

Many of us are learning to pace ourselves. We plan fewer activities on a daily basis and schedule in times for rest. In a world where being busy is highly prized, it can be hard to slow down to our own pace. Working full time can mean me time, social time and family time is squeezed as it takes every ounce of our energy to hold down our jobs, and there’s nothing left for anything else. We don’t do as much as we used to, as much as we would like, leading to feelings of guilt and a loss of self-esteem. 

Many of us noticed that the fatigue caused by surgery, and/or radiotherapy and/or chemotherapy seems to lessen over time. But after active treatment has ended, menopausal symptoms can feed into our exhaustion, either from early or treatment-related menopause, or, from taking hormonal treatment. The effects can be long lasting. 

Those of us with secondary breast cancer, whose treatment is ongoing, often have a level of fatigue that is very debilitating and may be an continuous problem requiring specialist support.

Many of us have experienced the ‘boom and bust’ cycle where we feel great and do loads, only to crash afterwards and be forced to take time out. We suddenly feel totally wiped out and there’s nothing we can do except stop and rest.  

The spoon theory - there’s plenty of information on this on the internet - is useful, but although it helps us understand and validate our symptoms and gives us some language with which to articulate it for others, we still feel frustrated by the times when we just can’t push through, keep going, have a little nap and then feel fine again. 

Many of us described fatigue as a tiredness that is not relieved by a good night’s sleep. It can be a weariness of body but also a heaviness of mind. This, we wondered, may be because our anxiety and fear is using up the brain’s resources and our usual cognitive processes are impaired. This, coupled with the fear and vulnerability that accompanies a cancer diagnosis, decreases our ability to bounce back from low mood. Our brain is preoccupied with the mental trauma and cannot lend as big a hand to our physical recovery as we might like. Keeping our brains active, even when we are forced to rest, may be helpful here. 

Activities can help us to manage fatigue, besides adequate rest, include physical exercise and mental relaxation. Some of us can go to the gym or go for a run, others prefer a gentle stroll in nature or a yoga session. We like to find absorbing things to do to settle and calm our minds, such as reading or creative crafts. Eating healthily helps, and avoiding sugar and quick release carbohydrates which can lead to fluctuating blood sugar causing energy highs and lows. There are courses, books and apps to help us understand cycles of fatigue and this understanding can bring an awareness which can be helpful. 

Explaining fatigue to others who expect us to be ok now that our cancer is behind us - and for some of us, many years behind us - feels impossible and some of us have given up trying. We just smile, say we’re fine. We decline a night out because we know that if we go, we’ll feel awful, struggle to stay awake and maybe we won’t make it to work the next day because it will just be too much for us.

We find comfort in knowing that fatigue is a common experience and that many women suffer from it. This helps us to feel that we are not “weak” or “feeble” for needing to slow down.  

Exercise can help, but it needs to be gradually increased, especially for those with severe symptoms. Many of us who are fit and active still describe experiencing fatigue, and others make the effort to exercise, not to improve fatigue but because we know it is good for our health. Showing self -compassion and not beating ourselves up if we can’t exercise can help us to manage the gap between our expectations and our reality. We do our best. Here is where we share our true resilience. We know we are all different and there is no one right way to improve our wellbeing. 

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. 

Useful articles:

https://www.psychologytoday.com/gb/blog/turning-straw-gold/201606/pacing-the-chronically-ill-person-s-best-friend


Saturday, 4 May 2019

Weekly Discussion Summary ~ Stress and Breast Cancer Risk

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Stress and Breast Cancer Risk

Our discussion this week focused on stress and whether we believe it has had an impact on our breast cancer, both in the original diagnosis and in ongoing incidents of recurrence or metastasis. In line with mixed evidential research, our experiences varied.

For some, a general observation that our current busy stressful lifestyles may contribute to a cancer diagnosis is convincing.  Stress may lead to a lowering of the immune system, an eat-on-the-run poor diet, little time to exercise and poor sleep. Severe stress may lead to generalised anxiety or other psychological disorders. We know that not looking after ourselves physically affects our state of mind and our wellbeing suffers when we are overwhelmed and under pressure. 

But if stress causes breast cancer then everyone who is stressed would get it wouldn’t they? They don’t. 

However, Naz told us that recent research is increasingly convincing in showing that higher levels of stress are predictive of an enhanced risk of getting breast cancer - reminding us that “risk” is not the same thing as “cause.”

We pondered over the specific stressful events that may have contributed to overall poor health - the loss of a loved one, losing a job, financial pressure, not coping at work, problems with children - the list is endless and varied. Some of us were asked about stress by our medical teams, which alerted us to question whether there could be some link. Many of us are convinced that our own personal stress was a contributing factor in their breast cancer diagnosis. A few don't believe there is any link. 

A cancer diagnosis in itself is a stressful event, and may lead to prolonged stress during treatment and beyond.  Relationship problems are common, as is financial hardship. Many of us reported feeling more stressed in general than before our diagnosis, due to the mental and physical challenges we face. A number of us reported that our diagnosis came after a period of high stress, once the stress was behind us.  A diagnosis after retirement or redundancy from a stressful job is not uncommon.

Many of us have looked back on our lifestyles pre-cancer to see what might have ‘caused’ it - this helps us to make sense of what’s happened, and although we know that it’s nonsense to blame ourselves, we do seek the answer to ‘what did I do to deserve this?’ At the end of the day no one cause is proven.  It makes common sense to take care of ourselves and looking after our own wellbeing becomes paramount for many of us. Minimising stress may be one of the choices we can make, but for many it may not be possible to keep stress levels low as life throws all sorts of stressful events at us over which we have no control.  How we react and deal with these events is within our control to a certain extent, and this is where self-care comes in. One example might be in returning to work following our treatment: it is possible to adopt a new approach, to set boundaries and decide to put ourselves first rather than allowing our work to overwhelm us.  The problem is, it’s really difficult to do. 

Some of us have attended courses on dealing with stress and these can be very helpful.  Exercise, getting enough sleep, eating well, mindfulness, yoga and meditation can all facilitate wellbeing, and it’s when we are very stressed and all our usual self-care routines go out the window that we need these the most.  When we are stressed we feel out of control, and sometimes small acts that allow us to feel more in control can really help, perhaps a ten minute walk or three minutes of deep breathing. Finding ways to minimise our stress can help us to feel that we are doing our best to prevent a recurrence or spread of a primary diagnosis, and to stay stable and prevent progression of a secondary 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.


Saturday, 27 April 2019

Weekly Discussion Summary ~ The Language of Cancer

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The Language of Cancer

In research literature, we are ‘survivors.’*In the media, we are ‘warriors.’* We are ‘fighters’, ‘battling’ cancer through cancer. We are described as ‘positive,’as ‘brave,’ ‘inspirational.’

In this week’s discussion, we shared our views and feelings about the language used to describe the experience of breast cancer.

Whether we are going through treatment for primary or secondary breast cancer, or, we’ve had breast cancer , we are all impacted by our diagnosis. We live with the consequences, with our changed bodies and minds. If we have been given an NED diagnosis - no evidence of disease following a mammogram or scan - we are supposedly in remission.  A temporary state of being, with the fear of recurrence or spread very real, and many of us take medication to help prevent this which brings its own side effects. If we have secondary breast cancer we live with cancer on a daily basis, continuing with treatment to help prevent progression. 

A few of us do feel that we are fighting cancer, engaged in a battle with cancer. This often resonates with us during treatment and because the treatments are so harsh and often debilitating.  Chemotherapy can be particularly aggressive. The image of fighting off the enemy, cancer, may be useful to us in maintaining a positive mindset. We also identify with the battle scars, the mutilation that is breast cancer surgery, and the mental scars that never heal.  Internal battles are real to us as we struggle with pain and fear. The image of the warrior ready to fight, to stand up for herself, ready to do battle if she needs to and to fight with all her being.

To say that someone has lost their battle or fight with cancer implies that the person hasn’t fought hard enough, they’ve somehow allowed the cancer to beat them.  The media uses this terminology all the time, announcing that someone famous is fighting cancer. Obituaries often say that someone has passed away after a long battle/fight with cancer, bravely borne. How can we be brave in the face of something that we didn’t choose, that we have no control over? 

Survivor, for those with a primary diagnosis who have finished treatment, implies that the cancer is gone, we are cured, we are free of the disease. The reality is that it is never over, we are always worried that it will return and statistics prove that we are right to be concerned. For those with a secondary diagnosis, we are living the best life we can, day by day, not merely surviving. Survivor also implies that we have done something right, while those who did not survive did something wrong. In the randomness that is cancer this feels very uncomfortable and can lead to survivor’s guilt, where we feel miserable that we are still here while others aren’t. This can be particularly strong where we have lost family members or where a family history of gene defects is part of our diagnosis. We ask, why us?  We are angry, and yet we feel to blame. The term survivor can also feel like tempting fate. However daunting the thought, we cannot truly call ourselves survivors until we die of something other than our cancer. Then we have survived it. 

Many of us dislike the word ‘journey’ in relation to having cancer, in that we didn’t choose to go down that road, to turn that way. It also implies that there is an end destination, that the cancer journey ends and a new one starts. There is no end.

We may be numb and mute in our search to find words to describe how we really feel about our cancer. It’s like being in a foreign country, and the fight is like the struggle for a breath when we’re under water.  We use the standard terms like survivor in our conversations, our writing, because people around us understand them.  We want to write about, blog about, podcast about, our experiences, in order to help others, and in order to do this we have to use words, we have to share thoughts through language.  

Other people also need to find terms to use to describe us, they need expressions which capture their own fear - the Big C, the worst of all illnesses - and perhaps terms like warrior help them. The terms make sense to other people so why not to us?  Because until you’ve walked a mile in our shoes, it’s so difficult to understand how we feel. 

A more positive term adopted by some of us is 'thriver’. We find our new normal, we move on, we move forward, taking our cancer with us. We can and do thrive, both after a primary diagnosis and also with a secondary diagnosis, in the sense that we are making the most of every day, we are living with gratitude and passion. However, thriver can implies that we are always upbeat, always positive, when the truth is we are often just the opposite. If we are not careful “thriver” can bring with it that “toxic positivity” which can undermine our very efforts to practice our resilience. That might not mean being out there grabbing life, it might mean mean resting, reflecting, convalescing. 

This is how one of our members summed it up:

Don't call me a warrior
don't  call me brave,
don't give me medals
don't give me a parade
I didn't fight 
I didn't win
I didn't choose
I just gave in

I gave in to the doctors
I gave in to the surgeons
I gave in to science that would save my life

But I didn't fight
I didn't win
I didn't choose
I just gave in

We would like you to know that we are not defined by our cancer.  We say: I am. I am still Me. We are, if you must give us labels, women:  partners, mothers, daughters, sisters, employees, volunteers, kind compassionate human beings. 

*I’ve included Oxford English dictionary definitions of these terms for those interested. Words come to mean something different if used often enough in a certain context: 
warrior : (especially in former times) a brave or experienced soldier or fighter.

brave: ready to face and endure danger or pain; showing courage.

fight: take part in a violent struggle involving the exchange of physical blows or the use of weapons.

battle: a lengthy and difficult conflict or struggle.

positive: constructive, optimistic, or confident.

inspirational: providing or showing creative or spiritual inspiration.

remission: a temporary diminution of the severity of disease or pain

survivor: A person who survives, especially a person remaining alive after an event in which others have died.

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



Sunday, 21 April 2019

Weekly Discussion Summary ~ Views about charity fundraising methods

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Has fundraising for breast cancer research become too closely associated with fashion and shopping? Is the reality of breast cancer trivialised by celebrity endorsements, fashion and glamour?  

In this week’s topical and emotive discussion, we explored our views and feelings about the ways in which charities go about raising much-needed funds for research into prevention, treatment and support for breast (and other types of) cancer. 

Our discussion, which included women with a diagnosis of primary breast cancer and women living with secondary breast cancer, highlighted just how many of us had been involved in fundraising efforts for charities. We run marathons, half marathons, we bake cakes, we make scarves and purses, we do moon and midnight walks. We are proud of our efforts and grateful for the chance to give back - we want to support ourselves and others.

Yes, we are all agreed that funds are needed, and, we recognise that we are living at a time when funding can be difficult to access. What then can charities do to maximise the prospect of securing funds? 

In recent years, the colour pink and the pink ribbon have been used to convey a sign for breast cancer. To add to that, clothing, underwear, beauty products, jewellery, flowers and even tea can all be bought in the name of breast cancer (though some pointed out the charities may only recieve a fraction of the cost).

Many of us have come to detest the 'pinkification' of breast cancer and find the emphasis on glamour, feel-good stories, celebrity endorsement - with the saucy cakes, pink wigs, the ‘nudge-nudge’ taglines, and associations with sexuality - deeply upsetting and even offensive.

We did not all agree. Some of us wear our pink ribbons with pride. We actively support campaigns like ‘Tickled Pink’.  A few of us argued that just because we buy - or are given - fashion products or indulge in a bit of fun does not mean that we are ignorant of the suffering caused by breast cancer. 

Some of us do not feel that the current trend for showing physical scars, and unpleasant, challenging realities is necessary to raise funds. It can also be helpful, some of us thought, that pink is so closely associated with breast cancer since it helps breast cancer charities to distinguish themselves from other deserving causes.

Pink-washing is particularly - but by no means solely - distressing for women living with secondary breast cancer. They shared the emotional impact on them of seeing a disease which will ultimately be the cause of their death portrayed as frivolous and fun. They also expressed hurt and frustration about the lack of investment into research into secondary breast cancer. Since the average life expectancy after diagnosis is 24-36 months, it is shocking that only a paltry 7% of breast cancer research income is spent on secondary breast cancer.

Some of us worked for charities and offered an insider perspective of the challenges involved in successfully running an organisation based solely on donations. The point was made that relatively small donations can make a huge difference to small, local charities and they have a significant impact on the lives of individuals they support.  

Whether we like it or not, fundraising can intentionally or unintentionally project an image of the cause itself. For some of us, this means that charities must consider the image that is portrayed and how the experience of cancer is projected, especially since in this media age we live in, image can be used to communicate the essence of the disease.

We thought there can be a danger in under-reporting or downplaying the reality of breast cancer. Some of us felt strongly that some campaigns undermine our wellbeing and recovery, for example many of us had found losing our hair traumatic. We are re-traumatised by adverts - one example the “Brave the Shave” campaign. Surely, we wondered, it cannot be right that the very charities who purport to support us are adding to our suffering? We understand that our friends and families are helped by the opportunity to show solidarity, but some of us are vulnerable and we need charities to hold our psychological needs in mind.

Unsurprisingly, as women already diagnosed with breast cancer we often feel conflicted by the increasing emphasis given to the prevention of breast cancer. Messages aimed at educating the wider community about reducing their risk of developing breast cancer have the effect of making us feel guilty and responsible for developing the disease ourselves. 

Do the campaigns really capture the reality of how we cope through treatment and beyond? Of our scan-anxieties and rates of recurrence? Of the chemo-brain that we experience? Of the pain and long-term effects we experience? A bigger question is, well, should they? 

Most of us accept that it hard to strike a balance. We appreciate everyone for their individual view and for the respect shown to one another. Here at BRiC, we recognise that we do not all have to agree, what is more important is that we have a space to talk openly, to listen. After all, we are in this together!

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.


Saturday, 13 April 2019

Weekly Discussion Summary ~ Is there always someone worse off?

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“No matter what you’re going through there is always someone who has got it worse.”

How many of us have compared our own experience of cancer with others who we see as having “suffered” more than us?   

The starting point for our weekly discussion was to look at why we compare our own suffering - usually unfavourably - with someone else’s and whether and how this strategy supports our resilience. 

We quickly found ourselves wondering whether there is an unspoken hierarchy of suffering in the experience of cancer? Are some cancers seen as “better” or “luckier” than others? For example, those of us who had not had chemotherapy felt as though we were not seen as having had a “real” cancer. Or, some of us who “only” had a lumpectomy shared that we did not feel entitled to grieve or mourn because we had not had a mastectomy. 

Worryingly, some of us reported also having had witnessed this kind of response first hand at support groups.

Many of us shared that we had heard clich├ęs like - “if you are going to get cancer, breast cancer is one of the best”, or, “you’re one of the lucky ones”, or, “you can live without your breasts, they are ‘outside’ your body”; or “Don’t be sad, you’re alive after all, that’s all that matters.”

Why, we wondered, do we down play our emotions? 
Why do we compare cancers? Why do we minimise our emotions as a way of coping? 

The obvious answer is that by desensitising ourselves, we attempt to avoid the pain that we feel, and by minimising what are often deeply upsetting experiences or responses, we feel we can cope better. The treatment is “doable”, we say. We feel so grateful, we say.  

Naz told us that while our responses are understandable, our emotions are important signals in communicating what matters to us. Minimising others’ emotions and problems can be linked with a tendency to ignore our own emotions and feelings - a tendency to avoid and deny. To turn a blind eye. Avoid the reality. 

It is natural then, to hide our feelings, to pretend to be fine, to wear the happy smile, so as to appear “strong”. But this avoidance can backfire, our emotions are our “truth” and they become louder and louder. Playing them down poses risks to our psychological well-being and resilience in the longer term. We end up having to use valuable reserves of energy to manage our critical inner voices which so often berate us for not measuring up. 

Often all we really want is an acknowledgment, an acceptance, embracing how we feel. Naz reminded us that to be able to embrace our fears as well as others’ fears and not hide, is strength, not the other way round. 

Worryingly, dominant narratives about cancer (sometimes perpetuated by the media, and even unwittingly by charities) can reinforce this tendency in ourselves.The result is that along with our cancer diagnosis, we are assigned a role to play, the “brave” cancer patient, the “plucky” survivor who has “beaten” all the odds. These narratives can become invisible prisons which silence us and isolate us, undermining our psychological well-being and our resilience.

Our discussion reminded us that acknowledging others suffering can help us recognise our own pain, that if we are brave enough to stop down-playing our emotions and responses, we can also find self-acceptance; that what really matters after the trauma of a cancer diagnosis is that we learn to respect our experiences and emotions, and, that we support one another to find an appreciation and respect for ourselves. 

Here at BRiC, we hold each other’s experiences and individual responses with respect, irrespective of whether we have been diagnosed with primary or secondary breast cancer. We share our problems - we are all in this boat together. 

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. 


Saturday, 6 April 2019

Weekly Discussion Summary ~ Antidepressants...to take or not to take?

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This week our discussion focused on antidepressants, to take them, or not to take them.

Antidepressant use is a complex issue as there are various different types and they are used to treat other ailments as well as depression.

Many of our members, women with primary or secondary breast cancer, reported taking antidepressant to tackle low mood, anxiety and the PTSD symptoms which may follow a diagnosis of breast. But they are also often prescribed to help with pain and with the hot flushes associated with hormone treatment and early menopause. 

Selective serotonin reuptake inhibitors (SSRIs) are the most commonly prescribed, and include Fluoxetine (Prozac) and Citalopram among others. Serotonin-noradrenaline reuptake inhibitors (SNRIs) are also regularly given and include duloxetine and venlafaxine.  Other more old-fashioned types are still in use, including Tricyclic antidepressants (TCAs) such as amitriptyline, often used to treat nerve pain. 

Although much work is being done to lessen the stigma associated with experiencing mental health difficulties and the taking of antidepressants, many of us felt it can still be seen as a weakness to take them, a sign of being unable to cope.  

Our experiences of taking anti-depressants are mixed - some of us see them as a life saver, others run a mile from them and give them a wide berth. A few of us shared we had felt so ill and unsettled after a single dose that we didn’t persist; but many of us have taken them continuously for many years with no ill effects. Our discussion highlighted that each person is likely to react uniquely to a particular prescription, and our GPs prescribe them for many different reasons. 

Our women told us of many instances where they had successfully taken antidepressants to tackle a condition unrelated to breast cancer, both before and after diagnosis, including post-natal depression, clinical depression, anxiety, bereavement, relationship breakdown. For many, antidepressants have also been helpful in dealing directly with the trauma of a breast cancer diagnosis and its treatment, e.g. coping with chemotherapy, and associated depression, panic attacks, fear and anxiety.   

Many of our women with a metastatic diagnosis reported that antidepressants have helped them to come to terms with their secondary diagnosis. They can can level mood and help with sleep, and many of us are able to function much better whilst taking them. Many of us have also found a low dose helpful in alleviating hot flushes, whilst others who have tried this have not noticed any improvement.

Combining antidepressants with other remedies has provided excellent results for many of us. Counselling, CBT, exercise, meditation, mindfulness - all have helped us to tackle depression, and for some of us, these methods have proved effective on their own, without the medication. 

We touched on some of the problems and controversies associated with antidepressants: we know from previous discussions that there is a lack of understanding about the mechanisms by which these medications 'work'. Naz told us that while we need to cope as effectively as we can, and we need to survive, the longitudinal 'effects' (or lack of) in these drugs are problematic - we expect the brain to take over after a course of antidepressants, but what happens? Many people need to go back on them again. We also don't know how they affect cognitive function. 

Many of us shared that we had been able stop our medication and had found a gradual withdrawal manageable.  Antidepressants may cause side-effects too, most commonly a numbing effect which over time can became unwanted for some of us. On balance though, our discussion highlight that those who found antidepressants helpful are very happy with the support they provide. 

There is a view that antidepressants are prescribed too routinely as a simple option, with not enough focus on alternative approaches to treating depression. However, many of us felt they are part of how we practice our resilience by being aware of our choices and by researching different approaches. For those of us who choose to take antidepressants, they may be a useful short term solution to negotiate the bumpy ride that is a breast cancer diagnosis, or in the longer term, an effective aid to optimum functioning. Others choose alternative routes to wellbeing. Whatever we choose, we decided, it’s 100% ok.

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



Saturday, 30 March 2019

Weekly Discussion Summary ~ Breast Cancer Surgery

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Mastectomy - single or bilateral. Lumpectomy. Mammoplasty. Quadrantectomy. Reconstruction - immediate or delayed. Implant. Skin-sparing. Nipple-sparing.

These are just a few of the words used to describe our surgeries to remove breast cancer, and, by those of us who have opted to have reconstruction and in this week’s discussion, we explored the impact of breast surgery on our self-esteem and self-image.

When we are first diagnosed with breast cancer, we are in shock, emotionally traumatised and many of us reflected that we had found it hard to think clearly about the surgical options that may be open to us. When we hear that treatment may mean removing one or both breasts, or removing part of one or both breasts, understandably, our focus is to rid our bodies of the cancer. Many of us found it difficult to make decisions about whether we wanted immediate reconstruction or balancing surgery as we lack confidence and the knowledge to do so. We shared that we had often made decisions without fully appreciating the risks, or, we chose to delay reconstruction without realising that we may face a long wait to get this done later. We are vulnerable and frightened.

For many - but not all - of us, our breasts are a huge part of what makes us feel female and sexual beings. Some of us have fed our children from our breasts, some of us feel deep grief that we will be unable to breast feed our future babies. 

For some of us, breasts are an integral part of our sexuality, both in terms of how we look and how we feel. We mourn the loss of, or the changes, to our breasts. Even when reconstruction is a success, we know that we now have “false” breasts. We may feel less womanly, less sexual and less confident in our appearance or our sense of self. Some of us hide our bodies, even when others would be unlikely to notice what we see as imperfections and imbalances. 

Some of us choose to remain “flat”  - that is to say we do not have a reconstruction. Sometimes, we wear a prosthesis, sometimes not. 

Irrespective of our surgery, our body image, our self-confidence, is affected. We have to adjust to fundamental changes, sometimes with limited choices. Intimacy following breast cancer surgery is a subject in itself, and it is, for many of us, tied intrinsically to how we feel about our new breasts. The impact on us may be different, depending on whether we are single or in a relationship, and if in a relationship, whether our partners are supportive.

Those of us at the start of their treatment, perhaps awaiting surgery, described fear and sadness at the prospect of losing their breasts, and for some, hopelessness at the thought of ever being intimate again after surgery. Other women later down the line offered reassurance, that we have healed, that we have been able to come to terms with loss, including the loss of our breasts or part of them. 

Some of us do not associate our breasts with our sexuality. Some of us find it hard to have only one breast and feel that being asymmetrical is a struggle. We feel very strongly that the choice to have a breast removed and to remain flat should be straightforward and respected. This is particularly pertinent for women who have had a single mastectomy and for whom surgery to balance them out ie to remove the other breast and achieve symmetry is not given the same weight as reconstruction. This surgery is not offered routinely and is only offered after counselling. Women reported feeling belittled or dismissed when they either declined reconstructive surgery, or requested a mastectomy to achieve symmetry.  Such a reluctance may push us into going for reconstruction as it is common to seek balance rather than lopsidedness. We are angry that doctors presume to know what we want and we want to be supported in making our own decision. It also seems ridiculous that a straightforward mastectomy is far more cost effective and has less risk of complications than reconstruction surgery, and yet so many surgeons are reluctant to perform a mastectomy on a healthy breast in favour of a complex, riskier reconstruction.

Many of us had experienced complications following reconstruction, including wounds that are slow to heal, infections, unsightly scars and a few of us reported operations that fail completely and reconstructions have to be removed or re-done. 

Reconstruction can sometimes lead to ongoing discomfort and pain. 

Reconstruction can be done from our own body tissue or with implants, and the operation does come with risks. It often involves several surgeries, even when it goes smoothly, and can be a long drawn out process, which is disruptive to our lives. On the positive side, many of us had experienced successful reconstruction, often at the same time as mastectomy or lumpectomy, with no complications and an excellent outcome. 

The degree of our contentment with reconstructed breasts varies: some of us are very happy with our new breasts but many also find them uncomfortable, almost alien. They can feel hard and heavy, and have no feeling in them. Some of us regret having reconstruction and wish we had stayed flat. Some of us would like to have reconstruction but are unable to due to medical issues. 

The decision not to have more surgery is one that many of us make, including sometimes but not always those of us with secondary breast cancer. We feel we have spent sufficient time “under the knife” and our priorities have shifted so we prefer to avoid the demands of surgery and would rather retain our lopsidedness or flatness. For others, the decision to remain flat is simply a preference and many of us are extremely comfortable with this. Modern prostheses are quite realistic and comfortable for many of us. For some of us, failed reconstruction (often after several painful attempts and subsequent complications) means that remaining flat is our only option. Learning to accept this isn’t always easy, but we find the inner strength and determination to do so. There are also reasons why wearing a prosthesis is impossible, due to pain from scarring or lymphoedema. 

What became clear from our discussion is how rich and varied our views are, that we want to feel in control of our bodies and the decisions made about breast surgery. We want to be informed and consulted, not rushed into decisions we might later regret. We are grateful to have our cancer treated, the tumours removed, but we also want our psychological health to be considered. We want to feel we are individuals and that our views are respected and supported, our feelings validated - what happens in the operating theatre changes far more than our physical appearance. 

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.


Saturday, 23 March 2019

Weekly Discussion Summary ~ Cognitive Enhancement

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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. 


Saturday, 16 March 2019

Weekly Discussion Summary ~ How it feels to be diagnosed with secondary breast cancer

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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 this week’s discussion.

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 heartbreaking 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 of us 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.

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. 

The photograph is kindly lent to us by Diane, who was given this photograph by a woman with secondary breast cancer: the tree represents how she felt when she was told it had recurred. The healthy trees in the background are her family.


Saturday, 9 March 2019

Weekly Discussion Summary ~ Coping with Fear 2

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“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. 


Saturday, 2 March 2019

Weekly Discussion Summary ~ The Positivity Cloak

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“......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!


Saturday, 23 February 2019

Weekly Discussion Summary ~ Cancer doesn't define us

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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!


Saturday, 16 February 2019

Weekly Discussion Summary ~ Hormone treatment brands

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“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.


Saturday, 9 February 2019

Weekly Discussion Summary ~ I'm Sorry

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“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.