Supplements?

 

Is there a role for supplements following a diagnosis of breast cancer?

    Our discussions on diet have highlighted controversial scientific, as well as lay, views about the role of specific diets in cancer prevention, progression and treatment. Naz told us the literature shows there is a similar level of disagreement regarding the role of specific supplements when it comes to targeting cancer. Evidence from clinical trials showing direct causal links between the effects of some supplements/treatments on cancer are weak or non-existent.

    However, as Naz explained, this does not mean that we should rule out theoretical ideas based on these links. The effect of supplements on general health is also debatable, whether herbal or chemical. While there is general knowledge that certain compounds are healthy and can boost our immune systems, evidence based trials to prove their efficacy are scarce or have not been able to produce replicable results.
Where does this controversial, and sometimes overwhelming evidence leave us?

    Our discussions which included women with primary and secondary breast cancer, highlighted our hopes for better health, irrespective of the evidence, because we want to feel better and we want to support our physical well-being. Controlling what we eat and ensuring that we are providing our bodies optimum nutrition is an obvious way forward to help both our physical and our mental health.

    Many of us described wanting to re-build our strength and immune system following debilitating treatments and continue to suffer short-term and long-term side-effects such as fatigue and pain. Janet summed up how many of us felt:

'It makes sense to me that our cells require optimum nutrition to work properly.....'

    Hormonal treatments, and early menopause, impact on bone health and many of us took calcium as well as Vitamin D, under the supervision of our GP. Vitamin D3, we heard, was thought to be most beneficial. Vitamin C, magnesium, iron and probiotics were other popular choices, as well as Omega 3 and turmeric. Some women had sought advice from Nutritional Therapists, or done considerable research to educate themselves on this subject. Others had attended workshops at their local cancer support centres or said they were wary of taking supplements and had instead adjusted their diet to try to ensure optimum nutrition.

Workability and our Professional Identity

 

“Whether we work to live or live to work, our occupation often contributes hugely to our identity.”

 

Will I still be employable after I've been diagnosed with breast cancer? Will my employer still see me as someone worth investing in? How will I be seen if my organisation needs to make cuts? How should I approach my employer if I need support?

As a group of women with primary and secondary breast cancer, our experiences were very varied. We heard of supportive employers as well as shocking examples of discrimination and injustice, which not all of us felt we had the emotional or practical resources to challenge. Some had felt forced to give up careers they loved, others had taken early-retirement. Many of us wanted to continue in careers that we loved but were struggling.

A few of us maintain our continuity at work throughout, describing our careers as a refuge in the storm of cancer. Others shared how they had valiantly used up precious annual leave to recover from surgery, either from unsympathetic employers or small businesses. Others had taken an extended period of sick leave.

Erosion of self-confidence was a common response. Self-doubt creeps into the mind of the most competent of us, and the realisation that we are not the same person we used to be adds to our anxiety. So many of us have little voices inside our heads telling us that we can’t be successful now. And yet, we do not want to be seen as less capable or less competent than our peers in workplaces which are increasingly competitive and under pressure as a result of economic and legislative demands.

The gap between expectation and reality creates huge pressures when we are feeling vulnerable and fearful.

A supportive line manager or supervisor can make a huge difference - someone willing to try to understand our experiences and who is willing to help us to balance our needs and our capabilities. Those of us who had received robust support, suitable adjustments and flexibility valued it enormously and felt our performance improved as a result.

Our experiences highlighted that employers and sickness procedures often view us as idlers and shirkers. This can lead us to feel worthless and severely undermined.

Many of us take stock and consider our futures. We make tough decisions about work, including reducing hours or responsibility, changing roles or finding something completely different to do. Some of us give up work altogether, perhaps via medical retirement or redundancy. Others are determined to prove themselves as capable as they always were, and take on perhaps more than we should in order to continue to keep ahead of the game.

Despite clear legal requirements and guidelines for employers, our experiences indicate that they are not always being followed, and when challenged, the resulting stress caused can be just too much for us. Occupational health teams, designed to assist both employer and employee in coming to a suitable agreement regarding reasonable adjustments, can be helpful, or punitive. Some of us had chosen to fight for our rights, others walk away.

A common theme was managing unrealistic demands and some of us felt we had been set up to fail. We don’t always have knowledge of our rights or the energy to challenge discrimination and poor practice. We can end up being managed out of jobs by employers based on capability. We also feel uncomfortable or a nuisance for continued reduced capability or significant sick leave, and employers often show their displeasure by reducing or removing sick pay once they have delivered on their legal obligation.

Very few of us have found excellent bosses with whom we can be honest and admit our vulnerabilities. These bosses are rare, it seems!

What we need is supportive adjustments such as a smaller workload, staggered start-times, reduced hours, time off for hospital appointments and regular breaks. We need helpful colleagues not snide remarks about shirking. We hope, if you are a line manager or colleague of someone with a breast cancer diagnosis reading this, that you understand the legal and moral obligation on you to support us, and how much we have to offer given the right assistance. We've been to hell and back, and if we ask for time off for an appointment then this is key to our well-being. We know how precious time is, and we aren't going to waste it. We will give you our best, every minute of every day, as we want our time to count.

 

For those of us who have had to change careers, reduce our hours or give up work, it is a huge decision that isn't taken lightly. Following a breast cancer diagnosis, with the battering our bodies take and the psychological toll stripping us of our former energy and capability, we may become depressed and our self-confidence plummets. We are fragile and vulnerable. For some, the decision to find a less stressful job or to give up work (for those lucky enough to be in a financial position that allows this) is triggered by a change in priorities. Having faced serious illness, we find we no longer want to spend our days working flat out. For others, it's going back to work that helps us feel normal again, that gives us a sense of purpose and satisfaction, and fills our days with productive activity, helping us not to dwell on our thoughts about our cancer.

 

For women with secondary breast cancer and who need continuous treatment, the only option may be to stop work as sustaining productivity levels commensurate with their position may not be possible. For these women, priorities often centre around spending time with family and friends. While giving up work may be a relief, there is still loss – the loss of career and routines; it can also be very hard to give up who they were as professional and working women and there is, of course, often significant financial implications.

 

There is often a conflict for many of us returning to work, particularly those of us who are young, ambitious women and who are on a career path. How do we balance the desire to succeed, to climb the promotion ladder, with wanting to see more of our families, to spend more time doing things we enjoy, to take it easy?

Being understood in our workplace can be a defining factor in helping us re-build our self-esteem upon returning to work, or, conversely undermine our already fragile confidence and self-esteem.

There are, we discovered, no easy answers. We need to try and adapt and adjust, to cope with the feelings of being lost and bewildered, as if we don't quite belong. A phased return to work can be really helpful, with the intervention of occupational health professionals as appropriate. Macmillan also provide objective advice and guidance to women who need it. Not everyone was aware of the protection afforded to us by Equalities legislation, or that this would continue for the rest of our working lives.

Those working in organisations with clear procedures seemed to fare better, but not always. We learned that it helps if managers can have a conversation with us about our cancer and can separate poor performance, from support to help us to perform well.

To conclude, here are some practical suggestions for both employers and employees:

·       A realistic phased return which introduces us back into the workplace

·       Part-time working

·       Staggered start and finish times

·       Reduced workload/caseload

·       The ability to rest in the day

·       Support to plan and prioritise work 

·       Equipment, for instance if we have lymphedema

Improving Our Cognitive Health

 

 "What do you take to make your brain work again? My brain is not what it used to be after diagnosis”

Naz started by saying how diagnosis, treatment and an overload of information means our brains can be sluggish and we cannot think as clearly and concentrate as we did before breast cancer. Cognitive efficiency is reduced and this can lead to a downturn in our psychological well being. We discussed how we are individually affected, how this manifests itself. After treatment for our primary cancer, the trauma and the medication can leave our brains fatigued, and after news about a secondary diagnosis, we feel “shocked” and “numb” and this awful news can affect our brains in a similar way to how we respond after a primary diagnosis.

    Lack of sleep was a big contributing factor, as it was noted to make us feel foggy, when our sleep improved, there was also a considerable improvement noted in our ability to concentrate. Prolonged periods of broken sleep give physical and mental difficulties, and getting our brains working again gets even tougher. It was also emphasised how concentration for any length of time is very difficult. Noticing when this is happening helps, and we can take a “pause”. Anxiety makes us feel foggy too, and negative thoughts about ourselves exhaust us. Work can sap us of our energy using all our, now more limited, brain power so we have little left for out of work in our home lives.

    Our brains need reawakening and our members discussed strategies and techniques to do that. Breaking down big tasks into small chunks was a method that one member found helpful and others agreed. To challenge and stretch her brain, one member learnt new musical pieces. Another theme that came up was how mindfulness can help and when we pause and take a three minute break, we can come back refreshed, with improved concentration.
    

    Creative activities are demonstrated to improve the elasticity of our brain and a member, after some very difficult news, has taught herself to crochet, and learnt how to focus on something new which has given her a great sense of achievement. We wanted to keep our brains “active” and these creative pursuits alongside puzzle books, escape rooms and reading non-fiction achieves that. Even if we are exhausted, if our brains are active, it is very satisfying. If we are participating in an enjoyable activity, we can become more relaxed and happier, and the frustration at our brain fog may lessen. Although this may not directly improve our brain fog, it gives a sense of well being and can divert from the anger we may be directing at ourselves. Those members who had participated in BRiC’s cognitive training research reported that they had seen a marked improvement in their concentration and attention which had helped the brain fog lift.

    Tackling the anxiety that makes us exhausted is really useful - and practising mindfulness helps us find some peace of mind, we might sleep better as a result. Self awareness of how our brains may process information differently now may help too, and acceptance with the understanding of the need to not tipping over into doing too much.
From a practical point of view, having a rest day and taking supplements seemed to help some. Vitamin D, zinc, vitamin C, glucosamine and magnesium were all mentioned along with the B vitamins. Staying hydrated seems to help in addition.

   It appears that better sleep is the holy grail, but if this is out of reach, there are various mindful and creative pastimes to give our poor brains a little boost, and help us adapt and live with this new normal.

  

Mindfulness Meditation

 

‘What is mindfulness? Here is one dictionary definition:

‘a mental state achieved by focusing one's awareness on the present moment, while calmly acknowledging and accepting one's feelings, thoughts, and bodily sensations, used as a therapeutic technique.’

    Mindfulness has become a fashionable panacea for all trauma and distress, the modern antidote to frantic living. Courses are available in abundance, and it’s commonly taught in the workplace and even in schools. There is little research on how it actually works on the brain, and feedback is mixed on its efficacy, with some reports even finding it to be the opposite of helpful. Mindfulness is prevalent in the buddhist tradition and can include meditation and prayer. Some studies show it improves concentration, can help with a good night’s sleep, enhances quality of life.
    

    Many of our women, all of whom have had a breast cancer diagnosis, some primary, some secondary, have found mindfulness very useful. It can be calming in stressful situations to breathe deeply and simply focus on the self or on our surroundings. However, focusing on our emotions can bring up all sorts of negativity and as a result, far from calming the mind, it can cause panic or upset. Accepting a flood of emotion in the moment, when what we are seeking is distraction from a difficult current situation, can be frightening. The idea that with practice we can actually control our thoughts and feelings is perhaps an attractive one, but it is difficult to master, and even more difficult to put into practice when most needed.
    

    The link between body and mind is also the subject of much research, and it is undisputed that relaxing the body via breathing exercises can calm the mind. The vagus nerve is affected by controlled deep breathing and this has been shown to improve equilibrium. Acceptance is what mindfulness teaches, acceptance that the present moment is as it is, and that we are safe in that moment, despite what is going on inside us and outside us. It’s not resignation, a giving in type of acceptance, it’s an empowering peaceful way of keeping ourselves grounded. As one of our members put it, ‘(there are) subtle and not so subtle feelings that can emerge when we are focusing, and how in riding the waves of those feelings, we can drift safely back to shore.’
    

    Visualising a calming scene when we’re feeling anxious can be a useful form of mindfulness - imagining being on a beach with the waves lapping against the shore can be helpful in counteracting the stress of a medical scan, for example.
    

    Our women described many different ways of using mindfulness. Some of us have attended formal courses, some have used online apps, some have read books, some are self-taught. Some are using breathing techniques for relaxation without knowing much about mindfulness, others have taken elements of what we’ve learned, perhaps meditation or a body scan, and we use these to help them to calm our racing brains. Others have picked up on techniques of mindful eating and use these to address healthy eating issues. Yoga may be seen as a moving form of mindfulness, focusing as it does on proper breathing and fusing body and mind in relaxing movement.
    

    Many of us probably practice a form of mindfulness unknowingly. Any focussed task that takes concentration can be done mindfully, and in a way that brings calm and relaxation. Crochet and knitting are a great example. This type of craft is both a distraction and a mindful activity, repetitive and calming.
    

    For deep-seated trauma, such as may be caused by a breast cancer diagnosis, mindfulness may not be the right ‘therapy’ to address the issues. For some, mindfulness can bring on sadness and panic, and this is a common reaction and often seen as failure. However this is perfectly normal and just means that mindfulness doesn’t suit everyone. It’s become so prevalent, everyone seems to be doing it. Mindfulness uses bodily sensations to connect to the present, through breathing or observing sensations in the body, and for those in pain or with scars and ‘broken bodies’ this means facing our trauma head on, which is just too much for many. Many reported finding mindfulness helpful during periods of relative calm in their lives, but found it too hard to do, for instance following a bereavement.
    

    Perhaps instead of practising mindfulness we could consider slowing down our pace of life, so that we are naturally mindful of our own needs, the needs of others. For those with secondary breast cancer, this slowing down may be enforced by health needs, and for some it reveals a different way of living, a more mindful way of being. Would we actually be better off spending time with a good friend, really connecting, really listening to what’s going on in their lives, as opposed to taking time out alone to focus on ourselves? There is a lot to be said for mindful living.

    Mindfulness has found a place in our world and its popularity speaks for its efficacy. However, it doesn’t take the place of talking therapies for deep issues and post traumatic stress disorder (PTSD.) Perhaps the best use of it is to find what works for you and practice that.

    We are eternally grateful to our amazing Laura Ashurst for her truly calming and inspiring sessions of mindfulness that we enjoy once a month.  

Exercise

 

“We are finding new ways of keeping moving, and celebrating smaller achievements like walking a kilometre rather than running a marathon, sailing a cruiser instead of a dinghy, or cycling on an electric bike rather than a manual one.”

    The benefits of exercise as part of a healthy lifestyle are well documented, and it makes common sense that a fit body will contribute to a resilient mind. Our group, which is made up of women with both primary and secondary breast cancer diagnoses, were interested in the specific ways in which dance and exercise help us to feel better. 

    Naz explained that exercise may lead us to feel more positive, energised and lighter. Our brains work more efficiently and this, in turn, can lead to better emotional regulation. Exercise can lift our spirits as it releases neurotransmitters in the brain which increase the brain’s reward responsiveness, which may become dormant when we are depressed.  

    We shared how we had used exercise, relied on exercise, tried exercise for the first time, given up and restarted exercise, become positively addicted to exercise. Some of us stopped exercising during treatment - either because we felt too poorly, or as rest became a priority, some of us continued as much as we could, while others stuck to a gentle toned down routine. 

    For those of us who love exercise and have a strong routine, a breast cancer diagnosis can be extremely frustrating as we may have to modify both frequency and intensity. Treatments like chemotherapy and radiotherapy may put a stop to exercise, and fatigue is a very common problem. When we feel weary, forcing ourselves to get up and move is difficult but may be as energising as rest, and many reported feeling lethargic when they missed a few days of exercise. 

    For many of us, exercise is a pleasurable part of our lives.  It may be running or walking, swimming, yoga, horse riding, sailing, gardening, cycling, climbing, rowing, caving, dancing. Any activity that involves repetitive movement can be helpful on many levels. It can also be a mindful meditative practice, calming the mind while working the body. 

    

    More challenging activities that require co-ordination of mind and body, such as more formal dance where we are learning steps and routines, are an excellent mental as well as physical workout. 

    The joy of moving our bodies to movement is evident in the comments from those of us who participate in dance. We listed ballroom, tap, ballet, disco, belly & salsa, and many of us have trained for medals and performances, adding the extra dimension of formally recognised achievements to the mix. Zumba is increasingly popular, and many different fitness through dance classes are now available. Music touches us emotionally and dancing brings our bodies closer to our brains and increases the fitness of both. It brings a sense of freedom as we lose ourselves in the music and move, as well as discipline as we learn new moves. Dancing to the radio whilst doing the household chores is also very popular for us! 

    We reported feelings of wellbeing associated with all types of exercise, including a sense of release, of alleviating worries and anxieties. Team games can help with feeling cameraderie, a part of something. Exercise has brought a better night’s sleep for many of us, helping us to feel physically refreshed and rested. Many find it’s helpful in managing anxiety. 

    Some of us are continually frustrated that since being diagnosed with cancer we are unable to exercise as much as we used to, with some activities proving impossible due to fatigue, aches and pains, and lymphodema (swelling in the armpits, chest and arms as a result of breast cancer treatment.) We felt that there is a need for advice and physiotherapy to help us and offer individually tailored advice.

    Although finding it hard to accept the changes in activity levels forced upon us by cancer, or by the side-effects of our treatment, we are all focused on what we can do rather than what we can't do. We are finding new ways of keeping moving, and celebrating smaller achievements like walking a kilometre rather than running a marathon, sailing a cruiser instead of a dinghy, or cycling on an electric bike rather than a manual one. We keep trying, we stumble, we start again, we never give up. When we feel weary and beaten, a gentle stroll around the block can completely change our mood. 

    A breast cancer diagnosis can undermine our confidence, and our eagerness to join in with group exercise can wane as a result. However exercise can also help to rebuild that lost confidence, and many of us have managed to join classes, gyms or teams. For others, walking in nature with friends, a dog or on our own provides peace and calm, and escape from the hustle and bustle of everyday life. 

    A breast cancer diagnosis brings fear and anxiety. For some of us there comes the question - what’s the point? We may put all sorts of things on hold, including our exercise regimes, while we recover physically and emotionally from the trauma of our diagnosis. Once active treatment is complete, many but not all of us, reported that feeling able to get back on track and exercising again can feel like one step on the path towards feeling good again.

    Exercise related goals and achievements can make us feel good about ourselves, whether we complete a marathon or manage 10,000 steps a day, it doesn’t matter.   There may be days when getting off the sofa and shuffling round the house may be a huge effort, and when we have down days, moving can really help us feel we’ve accomplished something good. 

    As an extra positive, a few of our members were inspired by our discussion to get out there and exercise after and reported back about how much better they felt.  However hard it feels initially, moving our bodies undoubtedly helps our minds to function better, so making the effort to find something we love to do is well worth the effort.

Physical limitations and exercise

'Accepting our physical limitations is one of the most difficult mental challenges we face with serious illness.'

    We all know that exercise is good for our bodies and our minds. It's good to raise our heartbeat, move our limbs, stretch our muscles. Exercise releases feel good chemicals into our brains and it lifts our mood. Recent research shows that exercise positively affects our brain, improving processing ability and connectivity. We just need to get up out of our chairs and move. It's as simple as that. Or is it?

    Our personal experiences bear out the idea that being a regular exerciser does not stop us getting breast cancer. Nor can it prevent recurrence or the development of secondary cancer. There is no evidence to suggest that exercising can prevent progression of cancer either. Many of us were 'fighting fit' and still got the disease.

    What exercise can do is help us to feel better about ourselves. It can assist in speeding up recovery from harsh cancer treatments and surgery, helping our bodies gain strength and heal better. Exercise can, most importantly, lift our mood. It may be the hardest thing, but to get out of our chair and move our body, whether this is a few gentle stretches or a full gym workout, will undoubtedly help us to feel less fatigued and less stressed, and better equipped to deal with daily life.

    We were reminded that for many women, exercise is curtailed following a breast cancer diagnosis because of the debilitating effects of active treatment and the side effects of ongoing treatment. When getting out of bed and showering becomes a major feat, then exercise has to take a back seat. Much as many of us might like to be swimming the channel and running marathons, for many of us this just isn't possible. We do what we can, and rest when we can't.

    Accepting our physical limitations is one of the most difficult mental challenges we face with serious illness. As one member put it, we need to stop beating ourselves up about what we should/shouldn't be doing. We each need to find a way to enjoy exercising in a way that supports our healing.

Our Diet

 

"So, have you introduced more greens in your diet, since diagnosis?"

In BRiC we have had interactive discussions around how diet may or may not be related to breast cancer. How our diets may have influenced our likelihood for diagnosis, and whether feeling that we have control over our diet post diagnosis can help us stay healthier and lower fear of recurrence and metastatic diagnosis.

    The sad truth is that breast cancer takes away a lot of control over how we can build for a better quality of life. Diet is one of the very few ways we can feel like we are taking control back. It is therefore a hot topic: many books are written, many blogs and cancer sites are produced to showcase the potential for so many different diets: low or high in, sugar, fat, protein, and greens, to pave their way through our lives.

    The story however isn’t that simple. Many of us talked about how ‘fit’ and ‘healthy’ they were PRIOR to dx. Some were vegan, some never drank alcohol, some were super fit climbing mountains, running marathons, and there were others who believed they did eat and drink in ‘moderation’.
    

    It is puzzling therefore to try and sketch a direct relationship between diet and breast cancer. This in itself has caused many of us much distress as well as confusion over what we should or should not include in our diet post diagnosis. Thoughts of ‘could’ve, ‘should’ve’, run through our heads and sometimes the stress of feeling that we are not including the ‘right’ thing, or not eating enough ‘broccoli’ is too much to bear.
    

    Many of us reported how feelings of guilt weigh heavy, that it was somehow our fault. Now, if we do have a slice of cake, or chocolate, we are eating too much sugar. If we do have a glass of wine we feel guilty; if we have red meat we can feel guilty, if we aren’t eating enough greens… and the list continues. Feelings of guilt and self-blame are key risk factors for depression, which many of us suffer from. It gets worse of course when others question us on whether we are keeping an eye over what we eat and drink.

    
    Breast cancer is a multifactorial disease, and one of the most complex cancers. Whilst many risk factors are identified, no cause and effect has been established. There are many genetic factors that interact with environmental influences that may or may not involve diet. A ‘healthy’ diet we agreed involves eating and drinking in moderation. A healthy diet yes is key for building psychological and physical well-being. It is not healthy however to stress over what we eat and drink.
    

    Diet is about self-compassion too, nourishing ourselves and yes, if we want to, have some delicious chocolate.

    Our diet interacts with our physical and psychological well-being, influences hormones, cognitive function, and most of our organs, including the brain. So, it is perfectly reasonable to think that diet can have a direct effect on cancer diagnosis and progression.

    However, Naz told us it has been very difficult to substantiate a direct and causal influence of diet on cancer diagnosis and/or cure because the way in which diet affects individuals so differently, depending on our genetic make-up and environment. At a molecular level it is easy to substantiate with much certainty the effects of certain foods on physical well-being, but, when it comes to epidemiological research, it is hard to derive conclusive results because of history, natural variation in physical make-up as well as environmental experiences and influences.

    This mixed approach leaves us in a confusing position. Most of us would like to believe that good nutrition will help us, however, there is often a lack of clarity and agreement over what constitutes 'good' nutrition.

    There is an extremely wide variation in our views - some of us follow a vegan diet, others, a ketogenic diet, others avoided dairy products or foods associated with oestrogen. Individual members reported significant improvements in their health and well-being, including a reduction in tumour size as a result of changes made to diet, even though different diets were followed. Weight gain - and loss - as well as fatigue due to treatment was a consideration, impacting on our confidence and self-esteem and we also talked about our views on alcohol. However, our over-riding concern was how we could support our health and well-being while enjoying a quality of life, given the challenges we face, impacted by our unique experiences and perspectives.
    

    We considered that irrespective of cancer, the 'food industry' is loaded with media claims advertising foods, including both specialised diets and therapies. Naz explained that while there is no substantiated evidence to back up the use of specialized or alternative diets, there are anomalies in traditional medicine, even though this is the predominant and scientifically accepted approach. Naz suggested that the absence of evidence does not mean evidence of absence.

    As a group, we were able to respect each other’s diverse views. We considered that given that as we currently do not know the effect of diet on cancer prevention and cure, it seems reasonable that we support one another to have the confidence to act on our own informed views about what each of us considers the best way we can support our physical and psychological well-being.

Our Children

 

“Some of us thought our children appeared to be coping well on the surface, perhaps keeping their feelings hidden, others might express their feelings through challenging behaviour”

 

    Whether our child is a toddler, young, in their teens or grown-up, we reflected that telling our child or children we had breast cancer was perhaps the hardest thing we have ever had to do.  There is guidance a-plenty, both scientific and anecdotal, but at the end of the day each of us makes our own agonising choices about how much, or little, to tell our children, and how much, or little, to involve them in our treatment.

 

    It was clear that deciding what, when and how to talk to our children about breast cancer felt like an enormous task. Whatever our diagnosis, we had in common our desire to try to do the best for our children. Above all, we want to protect them from the fear and uncertainty that cancer has ushered into their lives. If we can, we want to retain as much normality as possible within family life.

 

    Mothers with secondary breast cancer face the added challenge of how much to share about the nature of secondary breast cancer, which can be treated and managed, sometimes for many years, but can’t be cured and generally involves ongoing treatment throughout their lifetime. All while dealing with their own shock, fear and, in many instances, anticipatory loss. Making memories and sharing as much joyful time as possible becomes of paramount importance.

 

    What we decide to tell our children depends on their age, personality as well as our own values, beliefs and family dynamics. Many women choose to tell their children as much as possible, believing that complete openness and honesty is the healthiest way to help them cope. Some had actively involved their children in their treatment, taking them to appointments to talk to the oncologist and to be a part of treatment.

 

    We learned that we can over or underestimate our children and we may be surprised at how they react. Some of us shared that our children had dealt with our diagnosis well, becoming involved in treatment. Others shared alarm and distress at witnessing their children's reactions - including distress, withdrawal or angry outbursts - as they try to grapple with their feelings and cope with the reality of a mother who has cancer.

 

    Some of us talked about the devastating impact of our own experiences as children, when illness and death was less talked about, and how we had lost our parents without any adults explaining what was happening. These early experiences shaped the way we approached telling our own children, bringing back painful memories as well as the chance to correct the past.

 

    Some of us decided that a young child doesn’t need to know, or, we offer a simple explanation which we can come back to as our child grows and develops. Older children can choose to do their own research which poses the dilemma of how much to tell them.

 

    Younger children can be remarkably resilient, but many may find themselves bewildered and unable to articulate their feelings when mummy is poorly and can’t do all the things she used to do. For some, a mum who loses her hair may be frightening; others appear to take it in their stride.

 

    Older children may be better at hiding their fears and this can be worrying for us, particularly if a child refuses to talk about it once they’ve learned about their mother’s diagnosis. They may also feel embarrassed by our hair loss and the reactions of peers can be an added pressure. 

 

    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, or be afraid that they will lose their mother and wonder 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.

 

    If we can, crying together can be a release, with many sharing that this had helped their children to dust themselves down and carry on. Many children do cope well and adult children can become a rock of support, but others pull away and withdraw. Many mothers reported trying to keep the worst of their pain away from their children once they’ve told them for fear of upsetting them or making them anxious.

 

    Some of us thought our children appeared to be coping well on the surface, perhaps keeping their feelings hidden. Others might express their feelings through challenging behaviour - either at home, or perhaps at school. Effects can be long-lasting, or ebb and flow, triggered by transitions, news items or bereavement. Many schools, we heard, offer support, some in the form of counselling, and some women found it helpful to let teachers know of their diagnosis.

 

    There is a selection of age-appropriate literature available to help us and many women used these materials to supplement their conversations. These publications also help us to communicate that we are not alone, that breast cancer is happening to lots of women and their families. Humour can be helpful at times too as can joining in fundraising. Asking close family friends, aunts and uncles to keep a special eye out for children and to be confidantes if they needed a shoulder or a listening ear can also be supportive.

 

    Guilt and depression are common emotions. We want to be careful not to pass this on to our children. We can feel it is somehow our fault that we got cancer and we are to blame for causing anxiety in our children and potentially leaving them too soon.

 

    It can also feel unbearable to contemplate our child's future without our presence and care. Some had wondered whether it would be better if cancer took us quickly, while our children are too young for it to register and without a long, drawn-out period of illness. But this, we realised, was the voice of our depression and overwhelm. We all want to see our children grow up, to guide, support and love them. We all want to see our children achieve major milestones.

 

    “They find it difficult to express their emotions, and the lack of professional support is unbelievable”

  

    If we feel that our children are really not coping, who can we turn to?  This is where things start to fall apart and extra support is patchy at best. We heard that some schools offer great emotional support for their students. Many do not and sadly, we heard, some make the situation worse. There are very few charities that offer extended support to families after a cancer diagnosis, but even if you are lucky enough to know of one, there will probably be a waiting list. Unfortunately, that’s not how mental health works. The need for support is often immediate and distressing for all involved and should be treated with the same urgency as, say, a broken leg.  But with mental health resources so thinly spread, what chance do we have of getting ourselves and our kids through the cancer journey relatively unscathed? If we have trouble adapting and grieve for our old lives, then how are our children supposed to navigate the same emotions on their own? While going through our own trauma we can only help them so much.  We all agreed that support for them should be proactive and automatically offered on a set pathway as part of our treatment plan. Even a moving-on group aimed at families would be a start. Cancer has a ripple effect on everyone in our lives and we need to strive for better support for all who need it. As adults, we know that many of our mental health struggles started in childhood, so how do we break that pattern for our next generation?