Last week for our discussion we offered a challenge to our members, who are all women who have had a primary or secondary diagnosis of breast cancer: to describe yourself in three words, but when picking your three words try to be kind to yourself. For many of our members this was much more difficult than it sounds. So we suggested trying to think of three words our very best friend would use to describe us, or even actually ask a friend.
Rather than writing the usual summary, the very talented Anita took the words we came up with and produced this beautiful word cloud.
We suggest that when you're being hard on yourself, look at the words your friends used to describe you. Then take them. Embrace them. Accept the truth in them.
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.
“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
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.
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.
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.
“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 clichés 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.
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.
