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.

Why are Some Emotions Harder to Experience after a Breast Cancer Diagnosis

 

'The uncertainty we are left with, the ambiguity we are trying to process, the side effects we have to deal with and the positivity we need to live up to. There is so much going on.'

 

 Why are some emotions harder to experience after a breast cancer diagnosis, and others easier? Does it have something to do with protecting us from emotional distress?

 

    As you might expect from a group of women who have all had a breast cancer diagnosis, some primary and some secondary, we all find intense emotion triggered by hearing about cancer, reading about cancer, talking about cancer, even adverts about cancer on tv. What surprises us, sometimes, is the unexpected rush of head-on emotion that we are confronted with, often when we are in situations which make it difficult to deal with. Some of us described having to withdraw from situations or conversations in order to take a few deep breaths to stabilise ourselves, to manage the threatening panic that wells up inside us. Our post-cancer brain is on high alert and wants us to run away from anything cancer related, flight being preferable to fight in social situations where we need to maintain our decorum.

 

The trauma that is caused by a breast cancer diagnosis weighs heavily on the brain. We want to make sense of what we’ve been through, we want to come to terms with it and its impact, but sometimes our need to process what’s happened is just too much for us to cope with in the moment. At these times, our brains will simply shut off the experience and we find ourselves numb and dissociated, distanced from our own suffering in order to allow our broken brain to deal with whatever is in front of us. Our fear is so intense that the brain builds a wall which is a barrier to our emotions. Sometimes we break through the wall, and as time goes on we may find emotions hit us like a train, causing upset that demands we plug the hole in the barrier and leave the emotions firmly shut away from view. As a result we may find ourselves living with conflict and contradictions in our own head, wanting to understand, accept and even make friends with our experience, yet being unable to face the fear which threatens to overwhelm us. Our feelings may become out of synch with our current experience, with sadness flowing over us when we are in beautiful surroundings or living with continuous low level anxiety.

 

Our members described a huge raft of different emotions which we struggle with, not least anger which sits alongside the cry of why me? Why can’t I move on? Guilt at surviving, guilt at the pain our cancer causes others. We are angry that we didn’t get the support we expected and needed during treatment, that we are not getting the support we need now. We are angry that our bodies let us down.

 

Self-awareness is strong for our members, many of us having worked with counsellors and psychotherapists in order to process our experience of breast cancer. However, self-awareness may not be enough as our brains will act to protect us without us knowing and this can cause confusion and can lead to depression. A downward spiral of feelings we can’t own or process that overtakes any rationality, with fear dominating our waking thoughts. Our fear may lead us to disengage from anything that forces us to feel strong emotion and we find ourselves living at arm’s length from our feelings and distancing ourselves from life rather than immersing ourselves. Some of us reported evaluating our emotional experience rather than allowing the emotion just to be there. Living in black and white rather than in colour.

 

There is an external pressure to put on a brave face, to be positive, all the time. However many of us don’t feel positive about our cancer, although we can be positive about the day to day of our lives. The uncertainty we are left with, the ambiguity we are trying to process, the side effects we have to deal with and the positivity we need to live up to. There is so much going on. On the outside, we are smiling, positive, in control. On the inside, we may be isolated, lonely, terrified, sad.

 

We may be at our most vulnerable at the end of treatment for primary breast cancer. The chemotherapy, surgery, radiotherapy is finished. We are sent away, possibly with a packet of pills depending on what type of cancer we have, to get on with it. The structure provided by appointments is gone. Now we have time to think, time to process what we’ve just been through. Our emotions are heightened, just as everyone around us is congratulating us for being brave, lucky, strong (and all the other platitudes) and aren’t we glad we can get back to normal life now? It’s very common for depression to hit us like a stone and we may feel totally bewildered. We may find it hard to sit and think about our cancer, as thinking about it makes it real, and while we were on the treatment rollercoaster we didn’t have to acknowledge it was happening to us, we were just doing as we were told, not feeling very much at all, we were too busy.

    Many members commented on how useful it is to have the safe space that is our private group where we can tell it like it is with no fear of upsetting anyone. We all want to protect our loved ones from how we really feel, we don’t want them to be feeling our fear. In time, many of us are coming to terms with what has happened to our bodies and the mental scars left behind. As one member put it: we move on to find joy in the simpler things despite being quick to anger. The depth of our emotion means we can move from elation to sadness in a heartbeat, holding both together with our fragility.

 

We may be broken, but we are here.

What Does It Feel Like Being Diagnosed with Metastatic (Secondary) Breast Cancer

 

 

Alone. Devastated. Isolated. Shocked. Abandoned. Unsupported.

These were just a few of the words used by women living with secondary breast cancer to describe their feelings about secondary breast cancer.

 

Some women had been recently diagnosed with secondary breast cancer after learning to come to terms with their diagnosis of primary breast cancer, others had been diagnosed with secondary breast cancer some years ago, and a smaller number had received the news that they had secondary breast cancer when they first presented i.e they did not move from being treated for primary breast cancer and then go on to develop secondary breast cancer, and instead had to deal with this shock immediately.

 

We heard that living with secondary breast cancer feels like charting unknown territories as women try to live the best life they can, and live it to the full, all the while knowing that it is not going to be as long as they hoped, that maybe they won’t get to see their young children, or their grandchildren grow up.

We heard how incredibly lonely and heartbreaking it feels not to be offered the same amount of support and attention received during treatment for primary breast cancer.

 

We heard how marginalised women feel when there is so much emphasis given to “moving forwards” after active treatment. There was a plea to remember that women with secondary breast cancer only finish treatment when it stops working and no options are left for them.

 

We heard that women with secondary breast cancer are afraid of scaring or upsetting women who are currently in the position of being “NED”. We heard that they feel guilty for their feelings when they hear about others moving on with their lives when they cannot.

 

We heard how it feels to try to live with uncertainty about the pace of progression. We heard that women do not want to be defined by their disease; they do not want to be seen as “terminal”. They want to be valued for who they are, to be loved and supported by their family and friends. They do not want people to pretend or avoid their situation, they need their position to be held and validated but they also need support to continue to participate in every day life, to be “normal.” Women strive to live the best in every moment, even if that moment was not what they had wished for.

 

Some women manage to continue working, others have had to reluctantly relinquish careers. Women relayed an experience of long periods of stability in their health, sometimes punctuated by periods where they are very poorly, perhaps with fatigue, perhaps following surgery or having had cyber knife treatment, for instance. Whatever stage women are at, they continue to contribute to their children, families and communities.

We heard that women find it hard to cope with the limited understanding they encounter about secondary breast cancer. This widespread ignorance is isolating and they have to make difficult choices about what to share and how to present themselves.

 

We heard women share that when they were first diagnosed they thought they would never be happy again and of their surprise that it is possible to experience joy alongside sorrow. We heard of the challenge of balancing profound sadness alongside the paradox of sometimes forgetting one is ill at all. One woman told us about her idea of living for three years and how she thought “three years, that’s not so bad, it’s a thousand days - I can do a thousand nice things”. So, she does nice things whenever she can.

 

Naz told us that there is little research into the quality of psychological well-being in secondary breast cancer, but what there was highlighted three main points:

 

i) the quality of care is low or non-existent (but improving) for women with secondary breast cancer,

ii) that psychological vulnerability is much higher, but,

iii) cancer related expressiveness (ie sharing emotions) can help ease some emotional burden.

 

In short, the psychological cost weighs heavy, and there is disappointment at the level of care invested in secondary breast cancer.

 

A few women reported coping better when they’ve received ‘good quality’ care from a breast cancer nurse or their oncologist.

 

How can we help a friend or someone we know who has been diagnosed with secondary breast cancer?

 

Those of us with a diagnosis of primary breast cancer draw on our experience to be supportive, to listen and hold hands, we try and put aside our survivor’s guilt, enjoy our friendship, do fun things, but be there for hospital appointments and the worry. A few of us shared having spent special times with our friends whose health was failing. Our love is unconditional.

 

At BRiC we do not draw a line between primary and secondary and instead see both on a continuum. We understand that having a safe and non-judgemental place where we can share our deepest fears can help - a place to talk, to cry and to nourish.

 

We are all ears and eyes. We are listening.