Sunday, 30 September 2018

Breast Cancer Awareness Month October 2018 ~ #MyBreastCancerTruth

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#MyBreastCancerTruth

October can be a difficult month for those of us undergoing treatment for primary and secondary breast cancer, as well as those living with its effects. For all that we appreciate the pink-ribbon symbol and the efforts of charities to raise vital funds for research and support on our behalf, the prominence given to breast cancer - and arguably on preventing breast cancer - can be very painful for those of us who have already developed the disease.


This year, for our Breast Cancer Awareness Month project, we asked our members to tell us what matters most to them in terms of information about primary and secondary breast cancer.

The results are eye-opening.

Over the course of October we are sharing the stories of real women living with primary and secondary breast cancer. Our project #MyBreastCancerTruth highlights that breast cancer is more than a single story.

We are the women behind the statistics. We are the women whose lives are rich and meaningful, whose contributions to their families and communities are significant, despite our disease. We are the real women behind the statistics, we are not 'patients,' we are mothers, daughters, sisters, partners and friends. We are all women everywhere.



Friday, 28 September 2018

Weekly discussion summary ~ Impact on our teenage children

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“Telling our teenagers about our diagnosis with breast cancer was one of the hardest things we’ve had to do.”

This week we discussed the impact of our breast cancer on our teenage children's emotional wellbeing, their reactions and ways of coping. 

Naz told us that research shows that teenagers whose mothers are diagnosed with breast cancer often react with confusion and mixed feelings. They often feel torn between wanting to help and wanting their own lives. They may worry that they are more likely to get cancer now? They are afraid that they will lose their mother and then what will happen? A main finding, Naz shared, was a tendency to internalise feelings which can mean higher rates of depression and anxiety in teens with parents who have cancer compared to those with parents with ‘no cancer.’ 

Feelings of helplessness can lead to avoidance in our teens, both of us and of the feelings. This was something that many of us could relate to, with teens (and younger adult children) showing little outward reaction. A teenager is old enough to understand on some level but may not be confident enough to ask questions and articulate their fears. 

Our discussion, which included women with primary and secondary breast cancer diagnoses, highlighted our huge worry and guilt about the impact of on our teenage children. It’s easy to blame ourselves and our illness for wayward teenage behaviour, and many of us felt we had let our children down. 

We shared that telling our teenagers about our diagnosis was one of the hardest things we’ve had to do. 

Some of our teenagers were attentive and helpful, others withdrew and refused to engage with us during treatment. Some struggled more than usual with exams, others sailed through. Many of us felt that being open and involving our teens in the treatment plan is the best approach, and for some this had led to a strong mutual support whereas for others, the picture was more complex. Reactions varied considerably but included anger, tears and silence. Many asked us outright if we were going to die. 

Chemotherapy was often a particularly difficult time for our teens. Some were actively involved in supporting fathers and siblings, while mum was ill, others shut down and refused to engage, with a few choosing not to visit us in hospital. Seeing us lose our hair was often particularly difficult - this is such a stark physical reminder of the presence of cancer and can be particularly tough for those teens for whom appearance is a strong preoccupation. One or two families had used humour and coped by laughing about it, but these were few.

A few teenagers were outwardly cruel to us and appeared to blame us for turning their worlds upside down, sometimes in hurtful outbursts, others withdraw and don’t engage at all, not even to ask us how we are doing. Several of us described how our teenager had become so anxious that they had become suicidal. Some of us with younger children at the time of our diagnosis were now seeing the impact on our teenage children – years later. Those of us with inherited mutations like a BRCA mutation described a double whammy effect on our children.

Our discussion highlighted that ‘real life’ does not stop because of cancer and that other loss and adversity, such as a family bereavement, may hit our children – even those who appeared to cope reasonably well with our cancer – particularly hard. Likewise, some teens appeared to cope reasonably well, but went on to develop adverse behaviours later in adulthood. We wondered what role the role the trauma of our diagnosis had played in their difficulties?

Support for our teenagers from schools and mental health services is patchy, some of us reported excellence and others zero help or even damaging interventions. Having someone to talk to outside the family, a counsellor or teacher appeared hugely benefit. We asked why so little support is offered to our teenage children when we are diagnosed? It’s hard to go out and proactively seek it on their behalf when we our own reserves are so low.

For those of us with secondary breast cancer, and some of us with complex treatment histories, our children face the challenge of growing into adolescence and adulthood alongside a mother whose treatment is ongoing.

We are united in our anguish and concern about what having breast cancer means for our teenagers. We want to help them but we often don’t know how. Naz told us that we can do is to love them unconditionally and support them through their ups and downs. Their reactions and responses may hurt us terribly at the time but in the long run, it can be helpful. We can try to remember that what we are seeing is not final, but a stage. 

For all the experiences of adversity and pain, there were examples of resilience, of our teenagers coming through the hardest of times and going on to do well at school, university, and in their work. Our instinct is to protect our children but if we can involve them in our experience with honesty and love, then troubled teens can grow into strong adults, having learned about suffering and sadness. The teenage brain, Naz told us, is at its height of plasticity and therefore has huge capacity to build resilience from trauma.

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, 22 September 2018

Weekly Discussion Summary ~ Sleep Struggles

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"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/


Saturday, 15 September 2018

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

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“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/


Saturday, 8 September 2018

Weekly Discussion Summary ~ Fashion Tips

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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:

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/


Saturday, 1 September 2018

Weekly Discussion Summary ~ Calming Strategies for Anxiety

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‘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/