Weekly Discussion Summary ~ Sleep Struggles

"Intrusive thoughts about cancer are magnified in the lonely, dark of the night, and our fears about our health can easily occupy us for hours when we want to be sleeping."

This week we talked about sleep and our struggles to get a good night’s sleep following a diagnosis of primary and secondary breast cancer.

Some of us find it hard to get to sleep, others drop off quickly but wake frequently throughout the night. Some wake in the middle of the night and then cannot get back to sleep again. We've forgotten what it's like to have a good night's sleep. Many of us dread the sound of our alarm clock and feel as though we live in a constant state of exhaustion.

Sound familiar?

We are all aware of the usual tips: going to bed at the same time, turning off screens an hour or so before bed, limiting caffeinated drinks in the evenings and eating dinner early. But, it seems that a solid night’s sleep eludes most of us.

Our struggles with sleep are impacted by many factors: night sweats and shivers wake many (caused by hormone medication and early menopause), pain associated with surgery, lymphoedema and stress, worry, anxiety, fear – associated with our cancer or relating to family or other matters – can all cause insomnia.

Many of us described our worry about functioning on so little sleep.This sets up a vicious circle of being unable to sleep because of our worrying about not being able to sleep! Naz told us that it can be really hard to break out of this cycle as the brain gets used to the habitual patterns of sleep, and learns the pattern as a familiar state which it will try to maintain and replicate.

Pain and discomfort is a common cause of night waking, and trying to get comfortable leads to tossing and turning which is disruptive to getting back to sleep. Cramps and restless legs are a regular problem for some. Pain killers and other medication can cause side effects that interrupt sleep. There are no easy answers.

Nights are the time when we are often most aware of our fear and worry. The tide of all those emotions we have pushed away so well during the day wash over us - stress, worry, anxiety, fear associated with our cancer or relating to family or other matters - can cause insomnia. Intrusive thoughts about cancer are magnified in the lonely dark of the night, and our fears about our health can easily occupy us for hours when we want to be sleeping. Nightmares plague many of us.

Chemotherapy and the anti-sickness and steroid drugs used to manage side-effects cause huge problems for us, preventing us from sleeping and as a result leads to extreme fatigue. We feel completely washed out but unable to sleep due to the buzz of the chemo cocktails.

The most common helpful tip shared was to do breathing exercises, either just before bed or while lying in bed. Ante-natal breathing exercises are great, and a simple 'breathe in relaxation', 'breathe out tension' repetition is a good place to start. Naz explained that the way these practices work is by taking us from the body to the brain, rather than trying to directly calm the brain by other means.

Being active during the day and exercising can help. Many recommended yoga, relaxation and meditation and some of us are keen to try this. Reading before bed can be helpful (and much better than watching tv or surfing the net.) For those who can, a short, early afternoon nap can help to make up for sleep deprivation, and those of us some women who are at work full-time often need to have a restorative nap at weekends.

Naz explained the important role of sleep in our lives and functioning. She reminded us that a bad night’s sleep interferes with cognitive function, especially attention and memory. Our brains are highly active during sleep, and deep sleep performs a restorative function, processing our daily activities and refreshing and stabilising our brains. Sleep is important for retaining memories and for learning new things. She told us that women with a breast cancer diagnosis can take at least half an hour longer to fall asleep than those without, research shows, and their sleep quality is impaired as substantiated by our members. Brain function and structure are affected by the PTSD and anxiety inhibits the brain’s ability to become calm as we try to fall asleep. Our hormones are severely imbalanced, whether due to medication or trauma or both, and our brains remain on high alert and we are fearful, even while we are asleep.

What helps?

A great tip is to start every night anew, putting behind us all our wakeful nights and treating every night as new. Keeping a sleep diary may also help, noting bed times, treatment undergone, food and drink, activity and anxiety levels and so on. Audio books of familiar tales help some, and relaxation scripts, guided meditations or music may be useful too. Herbal remedies help some of us (these must always be checked for safety with a medical team to ensure there is no adverse interaction with prescribed medication.)

Gratitude can also help to induce a relaxed state of mind before sleep – reflecting on three positive things that have happened during the day, things we are thankful for.

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

Weekly Discussion Summary ~ Loss of a Friend or Loved One to Cancer 2

“Our grief rises with every single one of us that we lose.”

In our weekly discussion we explored our feelings about the loss of loved ones, friends or someone else we know, to breast cancer, including women in living in the public eye.

The heart-breaking news of presenter Rachael Bland’s death from triple negative secondary breast cancer last week resulted in a moving and public outpouring of grief. But did the untimely death of this vibrant and courageous woman have a greater and more intense meaning for those of us living with primary and secondary breast cancer?

We decided it did.

To grieve for the loss of someone who has died from the same disease you are suffering from, we discovered, is a challenging and complex process.

We know we are the lucky ones. We are still here. And yet, and yet…… the untimely death of someone who appeared so well reminds us of our own vulnerability; it reminds us that we may not be as safe as we imagine, it reminds us how little control we have, and we are suddenly hit by the fear of recurrence or progression of disease which we have tried so hard to block out.

This is a topic that will always be relevant because our sense of loss is renewed with the each of the all-too frequent losses we endure. Our reaction is vivid and real and hits us in different ways and with different intensities. Unlike other events or experiences where frequency and time can reduce the intensity of our reaction, our response to the loss of another woman with breast cancer remains unchanged, or can be even more intense with each new loss we experience.

Losing someone we have known personally too breast cancer - or another type of cancer - can be very powerful. Many of us shared our experiences of the loss of mothers, sisters and friends to breast cancer. But some of us had lost fathers, brothers or other relatives to cancer and sometimes partners. Although our grief can feel more validated, our experience of mourning is more complex. For us, there is not only the grief of losing someone most beloved but the uniquely devastating experience of a grief mixed with fear and guilt – fear for ourselves and guilt for our survival. Because our response isn’t entirely selfless, we feel even more guilt and perhaps even a sense of shame. Hearing about the death of someone in the public eye re-opens forces us to re-visit our anguish, re-opening the scars which we thought were healing.

We experience a myriad of emotions in response to bereavement; intense anger, followed by numbness, and perhaps a sense of helplessness; a helplessness that we could not help and that bastard is coming to get us too. Distraction can often work for a time, we throw ourselves into work, into having a “good time.” We can though then find that we are hit by intrusive thoughts about what we have been trying to avoid (or get over from) unconsciously.

All around us are people continuing life as usual and their normal routines. How can we talk about our feelings? How much of our pain belongs to someone else? We cannot find the words to describe how we feel. We remain silent. Our grief is invisible.

Many of us described a powerful survivor's guilt which takes the form of questions: why am I still here and she isn’t? Questions, questions, questions, but no answers.

It can hurt so much to realise that we can’t bring the person we loved back, we find ourselves wondering why on earth THEY had to die. It seems such a needless waste. We feel a sense of relief and guilt at our own survival. We try to make sense of it. We wonder why it was we have managed to survive - so far. We realise we cannot fathom an answer. For us too there is the difficult knowledge that part of our grief is an anticipatory loss for our future selves.

To counter our sense of helplessness, we inevitably ask ourselves whether there is anything that we can do effectively that has shown to reduce the chances. If the risks of getting injured while cycling without a helmet are reduced by wearing one, then what can we do to reduce the risks of loss when we’ve had breast cancer? Naz told us that this is a sensitive and paradoxical issue that is less given attention to in the literature, and with no straight answer. If we are not careful we can go around in circles thinking what could have we done, or what we still might be able to do.

Our discussion highlighted that whilst there are common threads of grieving amongst us, the experience is very individual, and there is no wrong or right way to grieve. Naz told us that research shows that if we don’t allow ourselves to grieve and embrace the sadness then we can be more at risk of psychological and physical distress in the long run. Allowing the body and the brain to digest our shock is incredibly important Naz told us, even though it may take a long time to regain our equilibrium, even though the process is painful.

It is said that time can heal. But some of us felt that this was problematic. We know that symptoms of post-traumatic stress sometimes don’t show immediately, but after many years and is therefore highly dependent on how we’ve processed the situation. The experience of loss of someone to breast cancer is so intense; we were not sure that ‘healing’ is the right word when our grief rises with every single one of us that we lose.

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 message us via https://www.facebook.com/resilienceinbreastcancer/

Weekly Discussion Summary ~ Fashion Tips

In this week's discussion, we shared the different ways we've learned to dress in a style that makes us feel comfortable and confident and our fashion tips.

Treatment for breast cancer results in many physical changes which are outside our control and force us to reassess the way we dress and what suits our changed physical appearance. One of the most obvious physical changes we experience is a result of breast surgery, although our discussion highlighted the very different surgeries we have experienced: some of us have one reconstruction, others two reconstructions, we might be one-breasted, lopsided or flat, with scars and lumps and bumps in odd places.

Weight gain caused by treatments impacted on our confidence and relationship with our bodies and is an added challenge.

Chemotherapy leaves us without hair, eyebrows and eyelashes.

Lymphoedema causes swelling in the arms (and sometimes torso) and means we need clothes which will accommodate a swollen arm.

Peripheral neuropathy may lead to painful feet that can no longer tolerate strappy sandals or high heels.

Whether we have primary or secondary breast cancer, being able to dress comfortably in a style that suits us is still important to us. Many of us also want to know how to dress fashionably, as this helps us to feel feminine, sexy, normal.

Lingerie was highlighted as a huge source of frustration for many of us: where once we used to wear pretty bras, we may now be restricted to post-surgery bras which are often sturdy and frumpy. Why the manufacturers of mastectomy bras think we no longer enjoy wearing lace or silk is beyond us! Yes, we want practical garments with pockets for our prosethesis and/or padding, but we don’t need bras like our grannies used to wear!

Swimwear is another challenge for us, as we want to cover up our imperfections but we still want something that looks attractive and is flattering.

Low cut tops may be a thing of the past as we strive to cover up scars and lack of cleavage. Although loose fitting, well cut patterned or striped tops may be our friend, we don’t want to end up looking like ‘a barrel in a tablecloth.'

One suggestion was to have a colour/style makeover and visiting a specialist lingerie shop for a fitting. Other tips to look good include wearing make-up (Look Good Feel Better offer special sessions for women with a cancer diagnosis, where they are shown how to apply make-up) and also jewellery, including ear-rings, necklaces, bracelets. Careful colour and co-ordination of jewellery can draw the eye of an onlooker to the face.

A good hair cut and colour, for those whose hair has grown back or for those who didn’t lose it, can also work wonders for confidence and again draws the eye.

A number of us found wearing more colourful clothes can be a lift. Natural fibres such as cotton, wool and silk are more comfortable particularly for those of us who suffer with hot flushes. Layers make sense here too, as we may be boiling hot one minute and shivery cold the next.

Scarves can be really useful as cover ups for the neck and chest area, and also they are good for adding a splash of colour. Natural light fabrics won’t aggravate hot flushes.

For lymphoedema sufferers, wide sleeves, silky and loose, are good for accommodating swollen limbs and disguising a compression sleeve, with a cuff bracelet at the wrist.

Interesting sleeve detail is easy to find in the current fashion trends, and Kimono style jackets are a great option. Ruffle front tops and bardot styles are fabulous for disguising imbalances.

At the end of the day, we want to relax in our PJs just as much as anyone else. We seek comfort on a day to day basis, but on special occasions we want to look glamorous too. Finding styles that we feel good in helps us to feel better about how we look, which in turn helps our confidence and self-esteem.

Here are a couple of links which offer excellent advice:

...https://www.maggiescentres.org/.../clothing-and-bras.../

http://flatterfashion.co.uk/flat-friends-flatter-fashion.../

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

Weekly Discussion Summary ~ Calming Strategies for Anxiety

‘I took a deep breath and listened to the old brag of my heart. I am, I am, I am.’ Sylvia Plath

This week our discussion focused on strategies that our members have found useful to calm themselves, both in times of stress and generally in the day-to-day. Our members are women with both primary and secondary breast cancer, and previous discussions and our members’ posts highlight that anxiety may be a major problem following a breast cancer diagnosis.

Naz explained what happens to our brains when we take a moment, sit down and breathe. Our neural networks are highly active when we are busy doing things, occupied with thinking, remembering, attention, decision making and so on. When we stop and ‘do nothing’ our brain is just as active, but it’s our default mode network (DMN) that takes over in this state. Its job is to make sense of our experiences, to process what has happened and what it has learned. This is essential for our survival. If our DMN didn’t do this for us, reaching homeostasis, we would be continually overwhelmed. It makes sense that if we encourage our DMN to engage by being still, then we will cope better when we are busy. Meditative breathing induces calm into the body and mind via a two way exchange of relaxation signals. Practicing being calm means we’re better able to calm ourselves at will.

For many, seeking a calm state is part of a general desire to look after ourselves. Calming activities that many women shared include movement, activities such as walking, running, yoga, Pilates, cleaning and gardening. For those too unwell to move much, then simply getting outside into the fresh air helps. Activities such as reading, watching a film, listening to music – all can be both distracting and calming. Occupying the brain whilst resting the body is an essential part of healing. Knitting, crochet, doing jigsaws and colouring are absorbing soothing activities that many women find helpful. Visualisation is seen as a useful tool, particularly as a distraction during treatments such as scans. Many enjoy being in nature and imagining a beautiful place can be very relaxing.

Specific calming exercises recommended by our members include breathing exercises of various kinds (e.g. alternate nostril breathing, box breathing, the three minute breathing space) and some had tried sipping ice old water very slowly which works as a mindful activity. Grounding exercises include things like rubbing our thumbs together to feel the lines, and stopping what we are doing to observe and be mindful of our bodies and our surroundings. Some women find their faith helpful in keeping them calm.

Not everyone finds focusing on the breath helpful. One of the problems with classic meditation is that focusing on breathing leaves the sub-conscious brain free to roam. Following trauma such as breast cancer, this may interrupt our attempts at becoming calm by presenting intrusive troubling thoughts. For some women this makes them feel overwhelmingly sad and leads to overthinking and dark 'worst case scenario' thoughts. For this reason many women chose distracting relaxation over sitting in silence. Playing an instrument, singing and listening to music provide pleasure, and require concentration which focuses the mind and relaxes it too. Some women like calming neutral music (it may not be a good idea to play songs that are associated with memories) but others prefer something heavy and loud which they find dispels their worries much better.

Taking part in activities where we are out and about meeting others can help us to feel more confident, which can assist in alleviating anxiety. Several of us sing in a choir and many belong to groups to practise their hobbies and suggested classes or workshops in improv comedy and laughter yoga.

An exercise in gratitude was mentioned which many women find helpful: listing three things each day we are grateful for, or perhaps keeping a gratitude diary. A good cry is a great stress reliever too.

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

Weekly Discussion Summary ~ Taking Stock...is now the right time to make changes?

"A diagnosis of breast cancer changes our relationship to the future. We start to wonder about the wisdom of putting off our dreams for the future, that trip of a lifetime we said we'd make, that home in the country we had promised ourselves when we retire. We ponder the choices we have made - are we happy with them?"

In this week's discussion we asked ourselves the question: “A cancer diagnosis makes you “take stock” but is now the right time to make significant and difficult life changes?”

A cancer diagnosis is a life threatening and life changing event. When we hear the words "you have breast cancer" consciously or not, we wonder how long we will live. In the blink of an eye, we shift from living as though we are immortal to deeply realising our fragility.

We have never felt more vulnerable, but mentally we prepare ourselves for the challenges ahead and how we will live our lives. We are 'mindfully' reminded on a daily basis - especially those of us with secondary breast cancer - that now is all the time we have, we are not guaranteed tomorrow and so we know we must make the most of today. We begin planning, thinking ahead, attempting to ‘take stock’. We evaluate our life choices, we may experience a shift in our priorities - we are no longer willing to tolerate people who don't value us, or, perhaps work suddenly seems unimportant. ‘Live life to the full’ becomes our mantra - we say it to ourselves over and over, sometimes with gratitude, sometimes with happiness, sometimes with recrimination and sometimes with an ache in our hearts for the things we know we want to do but can't..........

A diagnosis of breast cancer changes our relationship to the future. We start to wonder about the wisdom of putting off our dreams for the future, that trip of a lifetime we said we'd make, that home in the country we had promised ourselves when we retire. We ponder the choices we have made - are we happy with them?

Our discussion highlighted that many of us are no longer willing to compromise on our aspirations, we put into action our plan to relocate and reduce our hours; in contrast others described a deep need for stability and continuity, we want to stay close to home and family.

Anticipatory pleasure - looking forward to a well-deserved holiday at the end of a challenging time - no longer sustains us when our deepest fear is that the future will be even more of a challenge than today. If we are not careful, we stop planning, we stop dreaming and our horizons shrink. For some, this generates a sense of well-being as we live with a deeper connection to the here-and-now. Others feel a sense of restlessness, a need to make changes to their lives.

In the background (if we can call it that) are the numerous consequences that impact our psychological and physical well-being brought about by our diagnosis and treatments. The side effects we continue to live with restrain us considerably: fatigue, pain, lymphodema, chemo-brain and chemo-brain; altered body image, sexual problems, damage to our self-esteem and confidence, social isolation and more. We live in a constant state of needing to re-adjust within the restrictions we face – secretly some of us might wonder how we can make the MOST of what has changed for us?

And then there are changes that we want to make to enable us to live a better and longer life like perhaps changing our diet or career. The question raised is whether now is the right time to make them? How far can we see in the future? Are these changes necessary for prevention of disease progression or recurrence? These questions make us wonder what our priorities are.

We plan for the uncertain future, and yes we do ‘take stock’ but this can come with anxieties and fears. We are about surviving Naz told us, with her neuroscience hat on. The brain is ultimately geared towards taking stock, especially at the time of trauma. Our emotional brain becomes highly vigilant for signs of threat, or potential threat, and signals to more cognitive and prefrontal regions and functions of our brain to ‘take stock’, to prepare, to plan, to protect. In life threatening situations, like being diagnosed with cancer, this can become the default mode of the brain and so it may feel exhausting for some of us more than others.

Psychologically, we realised, the challenge is to learn that today AND tomorrow are equally important. The present AND the future. We need to create a sense of continuity between our pasts, our present and our future. We carry ourselves forward and it’s the balance between leaving behind and taking forward, and living in the present – instead of compartmentalising our lives we need to strive for continuity and growth.

If you are a woman living in the UK with a breast cancer diagnosis and you would like to join our private group send us a private message via 
https://www.facebook.com/resilienceinbreastcancer/

Weekly Discussion Summary ~ Coming Out about Breast Cancer

“‘Coming out’ about breast cancer - who do we tell, how do we tell, when do we tell?”’

In this week's discussion we explored the challenges and benefits of talking about breast cancer to our families, friends and employers.

The task of telling others about our initial diagnosis of breast cancer, is, most of us agreed, one of the most challenging and distressing aspects of our whole experience. Although there is a wealth of material produced by charities, many of us had not had much awareness of potential sources of support and instead relied completely on our instincts at a time when we were highly distressed and vulnerable.

Our discussion, which mainly consisted of women with primary breast cancer and some women with a recurrence and secondary breast cancer, highlighted that the way we manage who and how to tell we have breast cancer is influenced by who we are and our coping mechanisms. The method we adopt is usually in line with how we generally communicate with others and how private or public we are about our lives - if we are open, we usually tend to talk openly about cancer too. Others, more private, either share little information or might choose only to tell close family and friends. It was clear from our varied experiences that there is no wrong or right about it, and that we do take very different routes.

Our approach had varied, depending on who we were telling, for instance some of us had waited until we were calmer, or clearer about aspects of our treatment before telling our children. Others described deliberately keeping the news from parents in fragile health in order to protect them from distress and worry.

We realised that telling others about our diagnosis inevitably means that we were confronted our own feelings about cancer. The act of "sharing" can feel like a breach of our psychological defences, so if, for example we are in a state of denial, we might feel extremely vulnerable afterwards, or, if we've lost a relative, especially from cancer, old scars are reopened once more - and not only for us.

Telling others is a balance between managing our own needs and the needs of our loved ones. Sharing our news puts us in the painful position of witnessing the reactions of our family and friends who understandably respond with denial, shock and express their own raw distress. Many of us had taken on the role of comforter, consoling and reassuring others that we would be OK, all the while masking our own doubts and uncertainty. Some of us worried that we would be avoided by friends if our news caused them discomfort or embarrassment. Some of us had faced hurt feelings, for example if a friend felt they had not been told in a timely manner.

Indirect methods of communication can help, communicating via messenger, email, Facebook, or, asking a trusted person to take on the role of sharing information.

Talking to our employers about our initial diagnosis was often not as challenging as dealing with colleagues or clients (if our work brought us into direct contact with the public). However, going forwards, the greater struggle was to explain longer term effects such as the need for ongoing adjustments, the impact of treatment on our performance and whether, when and how to tell a prospective employer.

Is breast cancer a disability? Not all of us were sure about this, although some of us felt that the impact of lymphodema resulted in considersble disability.

Is breast cancer a vulnerability? Yes. A reminder, to ourselves, but not necessarily to others who soon forget.

Sharing the news of a recurrence or secondary breast cancer feels very hard, and is often accompanied by even greater sense of shock or failure. This time we know exactly what treatment will entail. Those of us living with secondary breast cancer described the unique challenge of trying to convey to those around them that their cancer was now incurable and what this meant, striking a balance between being both hopeful and realistic about the future.

If we've had primary breast cancer, how do we talk about our experience of cancer going forwards, after active treatment has finished?

On the one hand, it can be exhausting telling people, but we also want them to be more vigilant for their own health, to raise awareness and understanding in our networks and communities. We also need the chance to talk through how we live with the effects of breast cancer, to explain that it does not define us but it is part of us.

Naz told us about, ‘The Other Side of Sadness’, written by George Bonanno, an international expert on research that looks at coping with loss due to trauma, in other words, grieving. He tells us that there is no right or wrong way to grieve, some of us seem to ‘move on’ faster and others tend to get stuck. Even if we appear to move on, it doesn’t necessarily mean that we have not grieved. Resilience, Naz reminded us, is a natural characteristic of the brain and so our brain does what it needs to, to deal with trauma.

Positive things can result from "coming out" about breast cancer - we access emotional and practical support from those around us and many of described having been buoyed up by our experiences of what can be an outpouring of love and support. If we can gain a sense of control from who we tell about our cancer and how we tell them, we are empowered. We feel we can make a contribution, that others will realise that they can also be at risk of breast cancer. We can convey an important message. That yes, it can happen to you too.

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

Weekly Discussion Summary ~ Postcards from Within

'I am not what happened to me. I am what I choose to become.' C. G. Jung

Our discussion this week was inspired by a post from member Elizabeth.

'This piece is part of a series called Postcards from Within by North American glass artist Denise Bohart Brown. It spoke to me in a way that art rarely does.

I am not what happened to me. I am what I choose to be.

I am not defined by having breast cancer. It has changed me. Stopped my breath. Caused me to stand still. Brought tears. Fear. Pain. More than I could imagine. Still does.

It happened to me. It is happening to me.

But I choose to be more than the experience of having breast cancer...
I think if I were to send myself a postcard from within, this is what I would write.'

#postcardsfromwithin

We invited our members, who are women with both primary and secondary breast cancer diagnoses, to submit their own postcard from within. A selection of excerpts from their contributions are attached to this post.

If you would like to, please add your own postcard in the comments: what would you write if you were to send yourself a postcard from within?

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