Are We Pink?

 

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?  

Pinkification of breast cancer always results in an emotive discussion. We have 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 discussions, which include 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 do 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!

Relationships and Intimacy

 

It can feel like breast cancer robs us of our womanhood, profoundly changing our intimate relationships - some deepen, some become fragile, some break.  In this discussion we shared how our breast cancer diagnosis had impacted on partner relationships and intimacy.

 

    Our private network has members with both primary and secondary breast cancer and for those with a secondary diagnosis the effects of ongoing treatment can mean their sense of femininity is hit even harder. For many of our members their first experience of this is hair loss, through chemotherapy. Sudden and complete hair-loss affects the way we view ourselves and how we perceive that others see us. Add to that, the probability that surgery will leave us disfigured in varying degrees, then it is not surprising that we feel less feminine, less attractive and less confident.  For all our members the general tiredness adds to the struggle. Lots of us want to feel “normal” more than to feel feminine; something made difficult by the side effects of the drugs. Weight gain, premature menopause, loss of libido and loss of confidence affect almost all of us to some extent.

 

    For those in a relationship, having a supportive partner can be a real confidence boost, although some members confessed to a feeling of disbelief when their partner tells them they are beautiful. Those who are single often worry about how potential partners might see them in their new, less feminine state. Whichever way, we shared an experience of loss and adjustment, not only during our active treatment, but many years afterwards. Loving ourselves may be difficult at the best of times, but when we’ve been through the trauma of a serious life-threatening disease such as cancer, we must, in our different ways, mourn the loss of the woman we used to be and the woman we thought we might become. Holding ourselves in self-love and believing we are worthy of the love of another may be helped by being kind to ourselves, giving ourselves treats however big or small, from a new lipstick to a spa day or makeover and photo-shoot.

    Communication, self-compassion and self-help can assist us in maintaining our relationships in the longer term. Our diagnosis impacts on our partners too. We need to somehow find a way to adapt individually and together in the face of the changes that breast cancer imposes on us. We heard that lubricants and medications for vaginal dryness and pain are available, via GP, over the counter or online, and can make a huge difference.

 

    In some cases, support that was evident in the beginning waned over time resulting in partners becoming depressed and in one case experiencing a breakdown. Our discussion highlighted the need for professional support to be available for our partners so that were aren't left carrying the burden of their emotional needs along with our already challenged emotional mechanisms.

 

    The importance of our partners being able to talk openly and freely with us about their feelings around our breast cancer is clear, but it seems there are so many that are unable to share how they are feeling emotionally; sometimes for fear of upsetting us, whilst in other examples it’s clear that they don’t want to talk about or discuss the topic.  

 

    We heard that some women had met new partners following breakups just before, during, or after treatment. These women bring hope to those of us seeking new relationships, telling us that the right partner won’t mind how our body looks - but is little comfort to those of us struggling to accept our new bodies and are daunted at the prospect of being on our own forever.

 

    Our ability to cope is enhanced or otherwise, by the level of practical and emotional support shown to us by our partners. This is a recurring theme that highlights, especially if our partners are male, that expressing emotions can be challenging.

 

    We acknowledge as a group that our voices need to be heard, alongside a level of empathy and understanding from our partners about the fears of recurrence and late or on-going effects of breast cancer treatment. Many of our partners seem able to cling to their fears by not expressing how they feel. Support in the form of counselling or other talking therapies has in several members’ experiences been hugely helpful. NHS provision of that kind of support, as a standard package of care, and as a readily available option for partners from the beginning of our breast cancer diagnosis might be helpful in supporting emotional recovery following our breast cancer diagnosis, enhancing our resilience and coping mechanisms.

 

    Just as we are each unique in our experience of breast cancer, so our partners will have different ways of coping. We may influence this, depending on how much we choose to involve them in the nitty gritty of our treatment. Our experience may also depend on how strong the relationship is at the time of diagnosis, how openly we are able to communicate and on personality and coping styles of both of us.

    Whatever our experience of intimate relationships, it is clear that the support and sharing of our experiences and feelings was hugely valuable, even for those who found it too painful to participate. We learned practical ideas to help and found out that none of us are alone in our struggle.

Let's Talk about Sex (or Not): Vaginal Atrophy and Loss of Libido

 

“I don’t look sexy”, and “I don’t feel sexy”. “Surgery has left scars” “I don’t feel confident about my body”. “I am exhausted”.

 

Here at BRiC, we tackle the most painful and sensitive aspects of our experience of primary and secondary breast cancer. The impact of breast cancer on sexuality and sexual health is a taboo subject for many women, however, we try to introduce interesting and honest discussions about how our sex lives have been affected by surgery and treatments. 

 

    Many of us feel, after surgery, that we are ugly and deformed, with our scars and lop-sidedness, or maybe no breasts at all. The effects of chemotherapy and hormonal treatments stripping off estrogen from our body means that intimacy is difficult. Dryness causes intercourse to be painful, if possible at all, and lack of libido only adds to our problems. This means we are not confident and this dampens our ability to relax and be close. We talked about how some creams may help with vaginal dryness and pain but when our drive is inhibited, the spontaneity and pleasure is almost gone. For some, physical intimacy is loaded with fear, with rejection, and disability.  We can’t deny that breast cancer fundamentally changes us, mind and body. For many, breasts are powerfully associated with womanhood and sexuality. Is it any wonder that our sense of ourselves as sexual beings is profoundly altered.

 

    “I don’t know where my libido is?” “I used to be sexual and have a full-on fiery sex life before breast cancer, but that has all gone now” “Sex? It’s all in the past.”

 

For those of us in search for a new partner it also takes its toll:

“I’m not sure I’m going to find anyone who would put up with this”, “It is difficult to explain.”

 

    We agreed that with time we could feel more confident about our body image and intimate relationships, but we will never be the same and we grieve for our old selves.  The mental scars of breast cancer diagnosis and treatment run deep, they plague our self-esteem and disrupt our basic healthy desires. Many of us still struggle to understand who we are as a result of these traumatic changes. From the outside, we seem to be coping well, and moving ahead, but from the inside, it's another story. A story less told.

    

    Very few of us had received any medical or psychological support for these issues. Sex is not mentioned or talked about when we ask about the side effects of treatment. No help is offered.  We often have no one to confide in and we especially don’t want to talk to our partners - we fear their responses or rejection. We may drift into a sexless relationship, trying to pretend to ourselves that it doesn't matter while we silently fall apart inside. So many of us who had enjoyed sex pre-diagnosis found our womanhood stripped from us by cancer. There may also be the expectation for a return to normal, only to find loss.

    

“We have come to terms with it, that sex is something of the past.” “I think that he will probably leave because of this” “He is understanding but I do worry” “I try and explain but it was so long ago that he is convinced it’s psychological”.

    We worry that without sex, our partners may seek it elsewhere. Some of us have sex for our partner's sake but we don't enjoy it. For some, our partners are our carers and are no longer our lovers.

“It is so painful that I try and put it off” “I cry after having sex” “The creams and lubricants are OK but don’t make me feel sexy” “It is impossible at times.”

    It was encouraging to hear that satisfying sexual activity was experienced by a few of us. Trust, communication and sharing vulnerability and experiencing intimacy in new ways had helped. But the few of us who shared success stories were hugely outnumbered by those with ongoing difficulties.  Talking about all of the above helped us all to realise we are not alone, and it was helpful to share tips and experiences, but it highlighted a real need for more support in this area from the outset.

Radiotherapy

 

“Quite a few of our ladies reported being taken by surprise at how they felt during the two or three weeks after treatment ended”

 

Radiotherapy is used to kill and control malignant cancer cells and is often given after surgery and/or chemotherapy in the treatment of breast cancer. It is also used in treating secondary breast cancer that has spread to other parts of the body. Not all breast cancer patients are given radiotherapy, but for those who do need it, we hope our summary may be useful.

 

    While we don’t want to worry women who are coming up to radiotherapy treatment, most of our group members agreed that knowing as much as they could about what’s to come is helpful in managing anxiety. Preparing and being aware of what may happen can feel overwhelming, but we would like to stress that for many, radiotherapy is a simple and effective treatment that causes very few problems.

 

    Occasionally we hear of radiotherapy teams not recommending the use of a moisturiser on the affected area, but most do suggest regular moisturising to help prevent the skin becoming too dry and irritated. Pure, perfume-free creams and lotions are best and 100% aloe vera gel is also a popular choice. Many women are told not to wear deodorants or perfumes during treatment.

 

    The most gruelling part of this treatment may be the daily treks to the hospital, as radiotherapy is most commonly delivered 5 days per week for a number of weeks. Although this timeline has changed a bit since the pandemic, with many of us receiving more concentrated doses in order to reduce the number of appointments. For women who don’t live near a hospital this is a very tiring time, with long drives or journeys by public transport adding to the fatigue that is commonly induced by the treatment itself. Machines appear to break down regularly, causing long waiting times, and many hospitals make appointments day by day which makes planning ahead difficult.

 

    Keeping well hydrated during treatment is recommended. Doing gentle exercise to keep the arms and shoulders moving is also encouraged as flexibility will help patients to lay still, in the same position every day, while the radiation is accurately targeted. The set-up appointment is often quite lengthy – this is when the machine settings are recorded. Women will often have a number of tiny dot tattoos to assist with lining up the machine each time they attend. Some women have to hold their breath while the radiation is applied to avoid damage to the heart and lungs, and many report that this is very difficult. A few practice runs are usually offered which is helpful for those daunted at the thought of this. However, we want to reassure you that it is do-able, even if it feels challenging. 

 

    Some women experience very little skin irritation from this treatment, others will find that their skin remains darker for some time afterwards. The burning effect can be quite severe and can last for a week or two after treatment ends. This is often the time that tiredness kicks in. In a lot of cases, radiotherapy will be the last stage in active treatment, and many women reported feeling flat and exhausted at this point. Good advice is not to book a holiday or strenuous activity directly after the end of treatment - a quiet recovery period might be preferable, with plenty of rest and hydration. On the other hand, many women reported sailing through radiotherapy, with many continuing to work and take part in their regular daily activities. 

 

    Until we are undergoing treatment, there is no real way of telling how it will affect us. Quite a few of our ladies reported being taken by surprise at how they felt during the two or three weeks after treatment ended. It seems that their medical teams were not good at warning them about this. Several say that had they known, they would have planned more rest, used more cream, drank more water, and so on.

    Post treatment problems may include costochondritis (inflammation of the ribs), sore itchy skin, tightness and stabbing pains. The radiotherapy penetrates deep inside the body so there is a huge amount of invisible healing going on as well as that which is visible on the outside.

    

    Radiotherapy for secondary breast cancer brings its own set of problems as areas other than the breast, underarm and neck are targeted. Examples include treatment to the throat, which can cause issues with eating, and radiotherapy to the brain, which can cause hair loss (often a mask has to be worn while the treatment is administered, which can be uncomfortable). Other side effects may be muscle weakness, diarrhoea, and memory impairment. It is often delivered as part of a complex treatment plan which will be individually tailored. For these women, treatment is ongoing for life.

 

    The emotional impact of radiotherapy can be difficult, as we tend to hear the phrase ‘radiotherapy is a doddle compared to chemo’ bandied around a lot. Some women found lying on the machine table undignified, particularly with male radiographers and some insensitive female ones, too. Most reported having kind and considerate nurses, though, who were understanding and supportive.

 

    Many women spoke about building in little treats to get them through the treatment, like coffee and cake on the way home, a chat with a friend, an afternoon nap, or watching a film. Behaving towards ourselves with kindness always makes a tough time a little easier.  It’s ok to find it hard, especially when we have been given so much to cope with already - getting through those weeks can be a real mental challenge.  Just try to relax, breathe and take one day at a time, knowing you are not alone and we all understand.

 

 

Chemobrain

 

“Chemo brain is real”

 

    Though chemo brain is a widely used term, it is somewhat misleading because even those of us who have not received chemotherapy reported a notable impairment in our thinking capabilities. For those who have had chemotherapy, there may be lasting cognitive effects, hence the term 'chemo-brain'. However, Naz told us it is widely recognised that the trauma of a breast cancer diagnosis plays a significant role. Active treatment (such as surgery or radiotherapy) and hormonal treatments (which can bring on early menopause, or more severe menopausal symptoms) also contribute to a reduction in our cognitive abilities.

 

    In our discussions we shared how often we run into a room to collect something, then forget what it is as soon as we get there. We lose track of where we've put our keys, leave messages for ourselves in order to remember key tasks and, just occasionally, we might even call our partner by the wrong name! Although there were exceptions, the overwhelming majority of us described experiencing significant difficulties in relation to thinking and retaining information. Of course it can be funny, but usually it is hard, sometimes upsetting, because it undermines our confidence and ability to function in our everyday lives.

 

    Naz explained that chemo brain happens after diagnosis but before treatment even begins. Whether our lapses are small or large, they arise because of our inability to hold something in our working memory. Recent research shows that there are reductions in grey and white matter in the brain – changes that are significant enough to show up on scans - in areas that support cognitive functions such as working memory (mentioned above), attention and concentration. This is due to the impact of trauma, and the because the worries and fears that occupy our working memory take precedence, our brains end up having to work harder in the long run. We find that we take longer, we make more errors, we feel sluggish, and our cognitive functions are slow.

 

    The effects of chemo-brain are amplified through chemotherapy induced cognitive decline. The mechanisms in our brains which are involved in cognitive function must work harder to achieve similar outcomes to those which individuals without a breast cancer diagnosis (matched controls) achieve with less effort, which explains why some of us experienced mental as well as physical fatigue. Our members provided consistent anecdotal evidence for these changes. Naz told us she is working to be able to understand this deficit in more detail.
 

    Our discussion also highlighted stress and fatigue make chemo-brain much, much worse and we feel we can become so incoherent that we may lose the ability to speak.  Particularly hard is the lack of understanding from our families who unintentionally undermine us when our lapses stop being funny and start being annoying. We find it hard to talk about our chemo-brain at work and some of us shared that we fear being seen as less competent in our jobs, which also makes us feel vulnerable. Perhaps hardest of all, is the lack of wider recognition and support available to us which is why sharing and talking - and laughing when we can - is so important for our resilience.

 

    Despite these troubling experiences, Naz wanted to point out that there is help at hand that we can implement ourselves. The brain has a plasticity that can be altered by cognitive exercises, and adding mindfulness and relaxation can be very helpful in regulating our emotions, which further assists mental clarity. By strengthening the relevant neural pathways and the emotional connections between our emotional and cognitive parts of the brain, we can increase our cognitive flexibility and improve our day-to-day ability to function efficiently.

Fatigue

 

"Many people confuse 'fatigue' with 'tiredness' but it is not the same. Fatigue is an invisible legacy of breast cancer."

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

    With fatigue not only presenting in a physical way but tiring us mentally, too, we wondered if this may be because our anxiety and fear is using up the brain’s resources and our usual cognitive processes are impaired. This might also decrease our ability to bounce back from low mood. So, when we are exhausted the low mood, possibly even depression, could become a vicious circle, actually working to fuel the fatigue.  Keeping our brains distracted, even when we are forced to rest, could be helpful in this situation.

    We know fatigue is a significant side effect in many of the treatments for breast cancer. It affects our relationships, family life and social activities. It can seriously impact our ability to work. Indeed, some women give up work completely, others reduce their hours, but not everyone is in a secure financial position which would allow for this. Many of us described only just being able to keep our head above water in terms of doing the day-to-day basics, with no energy left for ourselves. Others shared that they have to make daily choices - a game with the children or making dinner from scratch - they can’t manage both.

    

    Insomnia seems to be a common feature of fatigue. As we become overtired, we worry about not sleeping as we lay 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. Fatigue and sleep are awkward bedfellows, with each affecting the other adversely. We spoke about our problems sleeping, which may have many causes, but all lead to the same extreme daytime tiredness. The one thing we crave is sleep, and it manages to constantly elude us. 

    

    Fatigue caused by surgery, radiotherapy and/or chemotherapy seems to lessen over time. Which makes sense, as our bodies make new cells and begin to rejuvenate.  But after active treatment has ended, we are dealt another blow as ongoing menopausal symptoms often feed into our exhaustion. Of course, menopause and associated symptoms may occur naturally, depending on age. However, they are often treatment-related, or induced by our hormones being blocked and tampered with during adjuvant therapy. Lymphoedema, if developed, can further deplete our energy, too. These effects can be long lasting. 

    

    It is important to recognise that those of us with secondary breast cancer, whose treatment is ongoing, often have a level of fatigue that is very debilitating and may be a 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. It is difficult to know how our “new” bodies will respond to things like stress or activity and, therefore, it is hard to strike a balance.

    

    Whichever way we experience it, living with fatigue is extremely difficult. Many of us find it hard to acknowledge that we can no longer do as much. Feeling constantly unwell under its weight severely and negatively impacts our wellbeing.

How do we cope?

There really is no option but to learn to pace ourselves and this takes time. 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 any time for ourselves, 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. Feeling under pressure to be living life to the full, along with expectations of gratefulness that our cancer is being treated, can work negatively to make it seem as though we are failing.

    Activities that 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.  Eating healthily helps, and avoiding sugar and quick release carbohydrates which can lead to fluctuating blood sugar causing energy highs and lows. Importantly, showing self-compassion and not beating ourselves up if we need to stop 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.

    

    Another suggestion is to take up a quiet absorbing hobby, crafting perhaps, or knitting and crocheting. Meditation and mindfulness also helped some of us to feel more at peace and less exhausted, and lowering anxiety levels helps us to sleep better at night.

    

    There are courses, books and apps to help us understand cycles of fatigue and this insight can bring an awareness, which can be useful when planning our days. Learning to delegate and to accept that we can't do everything - at home or work. Cut corners and take short cuts, ask older children and partners to help (although that can be exhausting in itself!).

    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. For example, we might 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. We just know it will all be too much for us.

    

    The spoon theory is a useful tool. There’s plenty of information about this on the internet, should you wish to know.  It helps us to validate our symptoms, also giving us some useful language with which to articulate fatigue, in order for others to better understand.  We don’t want, or need, to be judged by others when we are already struggling.

        

    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. We know we are all different and there is no one right way to improve our wellbeing, but we will keep trying, hoping that time and support will help us to make positive changes.

The 'Wide Awake' Club: Coping with Insomnia

 

“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”

 

Insomnia is a faithful partner of anxiety and so many members reported having that “middle of the night active mind” that refuses us rest. 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 – add in family and work worries and it’s no wonder we are unable to settle.

 

        Our members are women with both primary and secondary breast cancer, meaning as well as feeling anxious, other issues such as side effects of treatment and early menopause can also hinder sleep. 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.  Fatigue is both a symptom and a contributor. Being woken up by hot flushes was also cited by many as a key issue.  Pain is another problem, also cramps, and needing to get up for the toilet frequently.

        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. Some women reported a reduction in the quality of their sleep rather than insomnia, with many sharing the feeling that they sleep very lightly. 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.

 

        Our ability to function on so little sleep is a huge worry to us. This sets up a vicious circle of being unable to sleep because of our worrying about not being able to sleep!  The trauma of a breast cancer diagnosis may also affect our subconscious and introduce fear we aren't even aware of, which affects our peace of mind and consequently our ability to sleep well and wake refreshed.

        Naz told us that insomnia may be harmful to cognitive function, both in the short and long term.  She also explained 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. 

How Do We Cope?

Despite all the complaints about insomnia, our members have many ways of helping themselves to sleep better. Some have asked their GPs for medication, others rely on lavender oil. 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). Keeping active during the day by taking classes in Yoga, making time for relaxation exercises, or trying Reiki, may be helpful in calming us. Relief from hot flushes may help better sleep, with women trying acupuncture, medication, and chill pillows. Not drinking caffeine late in the day may help cutting out regular trips to the loo. A cool, dark, quiet, well-aired bedroom, plus a bedtime routine without the phone or tv, maybe including a warm bath or a cool shower, can all be helpful.  Some need to rely on painkillers to get comfortable enough to drop off.  For those who can, a short, early afternoon nap can help to make up for sleep deprivation, and those of us who are at work full-time often need to have a restorative nap at weekends.

        Naz pointed us towards this article, which largely aligns with what our members find useful:

http://healthysleep.med.harvard.edu/healthy/getting/overcoming/tips

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.

        Naz's advice to all of us who struggle with sleep is to accept it, work with it, go with the rhythm. It will, if we're lucky, come and go. We may feel at a low ebb after we've slept badly, but generally our bodies cope well and can live with it.