Things that get us excited and put breast cancer on the back burner: BRiC's Collective Voice

A recent Sunday discussion of ours focused on “Some of the things that get us excited and put breast cancer on the back burner. Have you found something that reignites your joie de vivre?”

Naz started off by saying that she has used work as a distraction to her breast cancer, but that writing grants, publishing papers and supporting her students mainly gives her a “sense of happiness”

Other members could relate to Naz on the issue of work, it distracts, gives them some normality, and by stretching themselves, gives them a sense of accomplishment too. Also, “being around my colleagues was very helpful to me, they were great”. One member is a tattooist, and, once she was allowed to work again post covid restrictions, has found a real buzz about her work, enjoying the creative process and doing what she loves.

A long term project has also helped one member, a project to convert a horsebox into accommodation. The project will allow her and her husband to travel, and afford them adventures, and make memories. This “happy project” gives a sense of accomplishment too, with a long term goal.

Creativity has been a great go-to for many of us, we have taken up art, written poetry, made jewelry, miniature flowers and renovated dolls houses. Activities such as knitting or crochet have proven links with mindfulness and improving depression so it is no surprise that this sort of creative process is something we reach for in various guises. Cancer has helped us push the boundaries of our abilities, and encouraged us to experiment and learn different techniques and skills - given one member a “self confidence I never had before”. We feel that sense of accomplishment again, and are surprised and pleased by it as many of these activities were initially taken up to distract us from our dark thoughts when we were on active treatment. We have found we want to carry on with them because of the joy they give us, in the process and the end result.

Being outside in nature was another common theme for us, how being outside helps us still our minds, looking at the space around us, the countryside, the colours, the expanse of space. Nature, animals, the night sky, camping and being with friends around an open fire makes us happy, helps us feel calm and chases away anxiety while we are in the moment. It allows time to reflect and get motivated by our own thoughts and theories.

We exercise too, if we are able to within our physical limitations: yoga, horse riding, dressage, running, long hikes, exercise classes at the gym. Setting an exercise goal, and hitting it gives us a natural endorphin high, and keeps us challenging ourselves. Or just having a dance to our favourite playlist!

For some members, they are still searching for something that “clicks”. Reading a good book can provide escapism, but if our minds are wandering then we may not remember what we read. Sewing and yoga can give some temporary distraction but may not fully “excite or engage”. Our concentration and focus may have gone and anxiety has replaced it, we may struggle to look forward to events that gave us a joie de vivre before cancer, and that can block us from those activities that may have excited us before.

However, we should be mindful of not using whatever gives us joy and excitement to help us avoid thinking about our breast cancer. It is healthier for our minds to not suppress our emotions, but give them the attention they deserve and when they deserve it. We are aware of pushing cancer to one side with the things we enjoy doing, but this can only be temporary and the darkness can return. We have to learn to live with the darkness we may sometimes fear and learn what we can do to excite us, what makes us smile and the world seem a little brighter.

Managing side effects of Endocrine Therapy: BRiC's Collective Voice

 

Is it too much to ask?

A recent Sunday discussion looked at the side effects of endocrine (hormone) therapy for those of our members with hormone positive breast cancer. Drugs such as tamoxifen, zoladex and aromatise inhibitors (such as anastrazol, exemestane, letrozole) are used to prevent recurrence or spread of cancer after a primary diagnosis or as part of ongoing treatment for those who live with secondary breast cancer.

Naz shared a research article published this month in the scientific journal Lancet Oncology which had reviewed the evidence for approaches to manage side effects. The article pointed out that hormone therapy causes a significant impact on quality of life and to adherence to medication. They feel that there should be an aim for breast cancer patients to be returned to pre-cancer quality of life and emotional/social function. Further, it was felt that this could only be achieved by careful management of side effect of anti cancer treatments. Members do not appear to receive much support to achieve this aim, with many being given a prescription for tablets to take for 5 or 10 years and then sent away with no further follow up.

Side effects can substantially affect our quality of life but stopping the medication could have an adverse impact on cancer survival. One article cited in the article found that 16% of pre-menopausal women stopped taking the medication due to side effects. Some of our members felt that side effects made them miserable with impaired quality of life but felt they had no follow up and that some felt their concerns were not taken seriously by medical teams. There seems to be a feeling that we should be grateful to have had our breast cancer treated and that side effects were just part of keeping the cancer away. Some had very helpful GPs but others felt their family doctor did not have the expertise of the oncology team who made the initial prescription.

Many side effects were reported by our members. Some were commonly recognised in breast cancer leaflets - hot flushes, joint pains, sexual dysfunction and reduced bone density. There were many others: vaginal dryness causing pain during intercourse, low mood, cognitive impairment (this often had a significant impact on work and home life), poor quality sleep and thinning of hair, nails and skin. For some, the joint pains were so severe, they struggled to walk.

As always, our members offered advice on what had helped them the most. Clearly there were some pharmaceutical prescriptions given by a doctor but there were also non-pharmaceutical options too. Many found a more holistic approach helpful using mindfulness techniques. Yoga and Pilates were found to ease stiff and painful joints. Exercise was found very helpful at helping lift mood, help reduce the frequency of hot flushes and improve sleep as well as improving fitness. Some members like to run, others to walk, cycle or garden. Others found the use of dietary supplement helpful, although it is important to check with your doctor, pharmacist or specialist nurse to ensure there are no interactions with prescribed treatments.

Pain control was very important for those with muscle and joint pains. For some, simple pain killers such as paracetamol sufficed, for others pain control was much trickier - some had been referred to a rheumatologist and found this helpful. Acupuncture was also used, albeit with varying success. For many, however, they were left to try to manage pain in the absence of an oncology team. Sometimes a change in medication or a short break can make a lot of difference but these opportunities are not available in the absence of follow up support.

Sexual dysfunction was very common, especially after the rapid menopause brought on by breast cancer treatments. Many members felt it hard to talk to medical teams about such a deeply personal issue. Vaginal dryness symptoms can be addressed with a prescribed but other symptoms such as loss of sex drive were much harder to talk about and even harder to find treatment in the absence of an oncology team with access to a psycho-sexual counselling team.

Almost universal amongst our members was the lack of information about benefits of treatment and harm from side effects. This meant that there was little opportunity to discuss in depth how much the treatment would benefit them and at what cost. Without this, there is no informed consent for drugs to be taken for up to 10 years. More than one member described being sent off with no follow up and a box of pills.For those who still had regular oncology follow up, this was felt to be useful and a good opportunity to get help.

Our members know what they want and need to manage their symptoms:

To be heard and believed when we say our symptoms are a struggle for us

Access to ongoing oncology or breast cancer team support and follow up with a point of contact so we can report significant side effects and access treatment options.

Full information about benefits and risks at time of starting hormone therapy (not merely an information leaflet to take away and read)

Better understanding from our employers at the changes in our physical well-being and cognition.

Given everything we have been through and will continue to go through, surely it is not too much to ask for?

Unraveling the emotions behind grief and why do we grieve the loss of people we've never met: BRiC's Collective Voice

In a recent Sunday discussion we talked about grief, particularly about how we grieve for the loss of people we have never met, celebrities and public figures who we don’t know, but whose deaths cause many of us to feel profound grief.

Grief is a complex emotion and affects us all differently, but it is something which we all experience in some way. People often talk of grieving as a process, but it is not a linear path, there are twists, turns, surprises and bumps in the road. As a group of women who have all had a breast cancer diagnosis, we were aware that deaths caused by cancer often touched us the most, perhaps reminding us of our own mortality or causing us to think “that could be me”. One of our members said that once we have had a cancer diagnosis our ability to live a carefree life has been taken away forever; thoughts of death may become an everyday part of our lives. We all know that none of us will live forever, but cancer steals away our peace of mind and may leave us in a constant state of worry for whatever life we have left.

Some of us have been raised to keep their emotions in check, finding expressions of grief unnatural and making the process of grieving more difficult. Cancer deaths often touch us very personally, even if it is the death of a total stranger, it can be hard to explain to others how the death of someone we don’t know affects us so deeply and stops us in our tracks. There were others who felt unaffected by the death of strangers or celebrities; members talked of needing their energy and focus to be on themselves and their loved ones; having a cancer diagnosis is exhausting and sometimes there is just not enough strength in us to think about people we don’t know.

For some the public outpouring of grief often seen when a celebrity dies, is uncomfortable and sits uneasily with them. Occasionally it is the similarity between the deceased and ourselves which causes grief – “he was the same age as me”, “her children are the same age as mine”, “they were married as long as my mum and dad”, “her diagnosis was the same as mine” – all these things can hit home and remind us of our own tenuous grasp on life.

We questioned whether what we feel when a stranger dies is actually grief, or is it empathy; fear; compassion; sadness; anger? Perhaps all of these emotions are part of grief, but we wondered if it is really the same as losing a loved one. Anger was an emotion many of us shared, particularly when we hear the words “died of cancer”, we are acutely aware that cancer is indiscriminate and such a cruel disease. It was interesting that the age of the deceased was pivotal for some members, feeling less sadness for those dying at an old age, but grieving deeply for those who die young; however this wasn’t the case for everyone, some members felt all deaths were equally distressing no matter the age of the person who dies.

Sadness for those left behind was an overarching theme, we acknowledged that part of grief is facing the future without someone. The sight of someone left alone after a lifetime with a partner can be heart-breaking to see. Sometimes when hearing of a death it reminds us of those we have lost and old memories can resurface, not all of them good. The death of parents was something many of us could relate to, for most bringing mixed emotions, sadness and loss, but happy memories and feelings of warmth; sadly, for others childhood memories were not so good and reminders of deceased parents brought painful memories. One of our members paraphrased Jamie Anderson saying: “Grief is just love with nowhere to go” and we all felt that grief for those we love and care about is usually much more powerful than for the celebrities and public figures. However, there were several mentions of times when the death of a celebrity has affected us deeply, sometimes taking us by surprise, leaving us distraught and feeling completely lost.

Grief is not one emotion, it is not simple and it is not the same for everyone, but one emotion which underlies grief is empathy, empathy for the person who has died, for their loved ones, for others around them. Empathy is a powerful emotion and enables us to make connections, even with people we don’t know personally. Grief and death are frequently taboo subjects but having a cancer diagnosis means we have all had to face the possibility of our own death, even more so for those of us with a secondary diagnosis; knowing we can express our fears in our private group enables us to share that burden. We can say “I’m sad about her dying because it could be me” without fear of being judged. It is important to understand that grief is a natural process, not linear and not time-constrained. People grieve in different ways and for different reasons, but each is valid.

The "Toxic Positivity" Effect

 

‘You’ll beat cancer if you stay positive’. This topic and its impact on our emotional well-being has been one of the most popular with hundreds of comments that hit close to our heart.

Our members have many a time heard the words ‘stay positive’, ‘a positive mindset will breeze you through chemo’, ‘You are so beating cancer’s arse’ ‘If you stay positive, you will get through this’, ‘You caught this early, you’ll be fine’, ‘You’ve SO got this’, ‘If anyone can kick cancer’s arse it is you’, ‘You’ve got the better cancer’. However, the reality of how these words make us feel is very far from positive.

What became quickly clear was a sense of how our feelings of fear and sadness due to cancer are minimised by others. We felt we were not allowed to be anxious, sad or fearful. A member said, ‘it shook me to the core’, and another saying ‘it was deeply painful’, when needing to smile whenever her cancer was mentioned. What we almost all agreed on was that the relentless positivity force hindered our ability to process the trauma that we had endured, minimising our emotions to meet the expectation of others, and this we found utterly exhausting and effortful.

Many of us felt that putting on our positivity cloak was a must for others around us as they would not be able to cope. This extended to immediate family, friends, and colleagues. Sometimes, we’ve had to apologise for not ‘coping’, amid not being allowed to grieve the losses we experience due to cancer.

There was a sense that we felt less positive whenever we tried to enforce this positivity, and so we’ve ended up being selective in our approach, censoring what we say to whom and pretending everything is fine and allowing ourselves the dishonesty to others when our feelings are not validated. This has meant we’ve lost friends and family members along the way.

The truth is that pretending that we are ok when we are not, is not a helpful line to take. We are not doomed and gloomed, we do have ‘positive’ days and we are hopeful and resilient, we want to survive to the best of our ability, and this is a really delicate point when it comes to secondary breast cancer. But the reality is that our fears can be very real to us. The sadness from the loss to our identity, and the side effects of treatment which linger on for years put us in a vulnerable position and can be limiting. In fact, we are not fighting cancer, but we are fighting the side effects of treatment. We acknowledged that embracing our difficult and upsetting feelings can help us experience a multitude of emotions that can only be beneficial longer term. We’ve learned that suppressing our emotions will backfire, validating them, and addressing them with appropriate tools can lessen the need for the ‘toxic positivity’ which we have found unhelpful.

An interesting point that emerged was a delayed experience of Post Traumatic Stress symptoms when we’ve in fact tried to be jolly and ‘positive’ through treatment. The reality of what has hit us has emerged later after a few years. This evidence shows that the inability to process the trauma that we have endured has led to a delayed onset of PTSD symptoms which isn’t the longer term aim of ‘being positive’.

We can refuse to be jolly and sunny when having sad days. We believe that a positive outlook is helpful of course but not the relentless optimism which can be blinding. We have learned that we can accept our vulnerabilities without resigning to them, and by embracing our emotions we are not denying them the attention they deserve.

We agreed that allowing us to ‘feel’ is to ‘empower’. A balanced approach to our emotional experiences will suit us better longer term. In fact, there is good evidence to show that one of the reasons behind depression is the inability to fulfil positive expectations. We do not want to feel depressed, we want to be able to thrive and grow from our trauma, so counter intuitively or not forcing the positivity cloak on can only increase the discrepancy between where we are and where we are expected to be.

Effects of breast cancer on our partners and how we are affected by their coping strategies: BRiC's Collective Voice

The focus of a recent Sunday discussion topic allowed us to explore and discuss the effects of our breast cancer diagnosis on our partners and how we are affected by their coping strategies. A diagnosis of breast cancer is a hugely physical, mental, and emotional challenge; surgery, radiotherapy, chemotherapy, and other breast cancer drug treatments can stretch us to our limits of coping. With that shared understanding of the challenges that breast cancer presents to us, Sunday night’s discussion provided an opportunity to look at how our partners’ coping strategies impact us. Partners’ ability to cope and our response to that are inextricably linked as our conversation highlighted.

There were several common themes that emerged from the discussion. These ranged from partners’ coping strategies that included their ability to be fully supportive on both a practical and emotional level, partners whose support extended to a practical level only, and several examples of a total absence of any kind of support which included one of our group members whose partner was present for a week following her diagnosis but who, after that early stage of diagnosis, had not been seen since.

Many of our group members were able to give examples of how partners attended hospital appointments with them whilst some reported that their own personal desire to be independent and strong and, in a way to protect their partners, saw them attending hospital appointments and treatment sessions alone. This, however, led to a realisation in one case about how that had alienated her partner. One member poignantly explained that her partner ‘didn’t attend any appointments’ and ‘never has and doubt ever will, support me emotionally.'

There were examples of partners’ behaviour being less than supportive. One of our group members was described as ‘lazy and milking it’ by her partner. Another described her breast diagnosis as triggering jealousy on his part leading to a faked suicide attempt. Both relationships ended because of wholly unacceptable behaviour on the partner’s part.

There were several examples of partners being fully and totally supportive which included the ability to talk and acknowledge our emotional needs. However, there was a wide range of experiences and personal accounts that highlighted the inability of many of our partners to provide emotional support. Often partners’ views included an inability to understand the need to talk about the breast cancer once active treatment had finished with an attitude of ‘Why? It’s over now,’ along with an approach that included a lack of understanding of late effects of treatment with one member describing how ‘the instant it finished he expected me to be better.’

Thoughts were expressed around the worry and concern that some of us feel that we have caused our partners with support coming from other group members that served to remind us all that we are not to blame for how our breast cancer diagnosis has made our partners feel. Emotions like guilt and anger were described in relation to how our partners’ strategy for coping in response to our breast cancer diagnosis manifested itself.

In some cases, support that was evident in the beginning waned over time resulting in partners becoming depressed and one 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 that there are so many of our partners 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.

Our ability to cope is enhanced or otherwise, by the level of practical and emotional support shown to us by our partners. This was a recurring theme that highlights, and especially if our partners are male, that expressing emotions can be challenging. One of our members described her ‘emotional recovery as something I have to very much deal with on my own.' The view that there’s a need to closely examine how young males are raised so that they are much better placed to express their emotions and fears was raised by one of our members with a reference to how ‘suicide figures bear this out.'

The experiences described within our group are broad and diverse and although we are individual in the way that we respond to our breast cancer diagnosis, we share the need to be able to talk about how our diagnosis affects us, especially with our partners. There is an expectation that we should be fully supported emotionally and sadly this is often lacking. However, an example highlighted from one of our members whose partner had experienced a cancer diagnosis himself showed that personal experience of the disease led to a better understanding. Another of our members who recently experienced the agonising personal turmoil of watching her father deteriorate in the lead up to his death expressed that ‘sense of powerlessness that’s so hard to bear’, which helped to put into perspective somewhat the viewpoint of some of our partners’ experiences.

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 reoccurrence and late and 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.

Thank you to all of our group members who participated in this rich discussion to highlight our points of view on this topic.

Our anxieties coming out of lockdown: BRiC's Collective Voice

 

The topic for a recent Sunday night’s discussion suggested by our lovely Anita Traynor, focused on how we feel about, ‘coming out of lockdown’. Naz led the discussion by sharing her personal reflections as we explored our thoughts and opinions on the topic.

Lockdown has played an important part in protecting our well-being and in doing so it’s also ‘over-protected’ our social life and social connections as well as our relationship with the outside world. Anxiety about whether it will ever be the same again, anxiety about whether we will hit another wave and go back into lockdown, the fear of whether we will be exposed too much and become vulnerable, and anxiety about social interactions and how they will 'look'. A lot of us have changed the way we work and study, so there is the uncertainty hanging over what it will look and feel like should we go back to the way 'things were'.

Some of our members had mixed feelings about all this, whilst many of us felt a nervousness, some members actually were not anxious, as all they seemed to hear was how scared people are. There was a common understanding around this as it has been one ‘heck’ of a year and the situation is set to continue for some while yet, as described by a majority of us.

Many of our ladies have made plans and need the ‘taste’ of normality in order to look forward to the future with optimism.

A number of our members have become much more solitary and the loneliness has had a significant impact on our mental health and well-being, we acknowledged similar feelings when we went through our breast cancer journey, however we found that trying new things like meditation, arts and crafts, experiencing the beauty of nature has helped us cope better.

We are worried about resuming ‘normal’ life as some of us don’t wish to go back to how busy life was before the pandemic, and have made firm decisions to learn to say ‘no’ to too many social engagements, as many of us are most comfortable and safe in our own homes and familiar surroundings.

Some of us who are keyworkers have travelled to work throughout the lockdown despite restrictions in place. Seeing patients has been tough for nurses; the anxiety around having to start organising clinics for patients and the fear of how safe we may feel is going to be a challenge.

Many of us are excited and looking forward to seeing our families, friends and colleagues. We yearn to hug our nearest and dearest, the laughter, the touch, the sharing of emotions and face-to-face meetings. However it may not come naturally and may take some time to adjust to a ‘new normal’.

The sadness around not being able to be with others during their hour of need, not being able to be together at funerals to support each other and missing many milestone events like, weddings, birthdays, new babies, graduations and the list goes on. But we have been fortunate enough to have had the internet technology we have nowadays, which has let us connect with our loved ones and mark these occasions differently.

We sometimes bounce between two opposite views. Sometimes we are desperate to get back out into the wider world, eating in the restaurants, travel, theatre, going to the cinema, seeing friends and on the other hand we feel anxious about whether we will ever feel safe in these types of surroundings.

Whilst some of have had the option of working from home, we now fear the pressures of employers wanting us to return back into the office. We are experiencing negative thoughts, like, will I be safe? Would they accept me? Can I still do the job? We need to be open, honest and share how we are feeling, which can be a challenge, so therefore circumstances make us feel trapped.

The rollout of the vaccination programme which is in place gives us hope and a sense of protection, that our fears will subside in time, as we learn to live with the virus and also have some kind of freedom to do what we enjoy.

Searching for the hero inside ourselves: BRiC's Collective Voice

 

"Who/What is the hero inside yourself?" A recent Sunday discussion talked about what we are proud of, what makes us strong, what it is that keeps us going through all we have to endure?

Sometimes it’s difficult to see oneself as any kind of hero, more often we are focused on day to day tasks, the mundane roles we play, or the struggles and pain we deal with. Often we don’t see our own strength or our inner hero until we have time to stop and reflect on events, be those in the recent or distant past.

It was interesting that many of our members opened their contribution to this discussion by describing how they struggled to find their hero within. As the discussion progressed we found our strengths and saw the beauty inside ourselves. Strength was a recurring theme, many of us talked about an inner strength, often brought to the fore by our breast cancer diagnosis; being faced with our mortality and the trauma of cancer awakened what one member called her “steely core”. We found courage and determination, stoicism and self-awareness, we realised that we are often stronger than we knew. A few members related that they were now braver than before, they were willing to try new things and were less afraid of failing. “With cancer suddenly thrown into my path, I realised I had no reason NOT to try, so I did.”

Lots of us talked about how our parents were a huge part of building that strength, some by their support and example, others because they weren’t the parents we needed, but still taught us valuable lessons. Dads especially seemed to instil in us self-belief and resilience. Memories of childhood experiences both good and bad were frequently mentioned and it was generally agreed that being surrounded by love allowed us to grow stronger.

We talked about nurturing our inner hero, practising self-care and not worrying if we have bad days; safe in the knowledge that we are tough enough to get through it and things will get better. Some of us were proud of being able to acknowledge when we need help, of finding the courage to ask for help and accepting it when offered. Asking for help actually takes a lot of strength and courage. It’s as important to understand our own vulnerability as it is to be proud of our strength. We are proud of keeping going when things are difficult, of getting up when we are knocked down and of helping others despite our own problems. One member said her inner hero came from her innate kindness.

It was acknowledged that we all have wobbly days, that we can’t be strong all the time and that we are a work in progress. For many of us our inner hero comes from the ability to step back, to say no and to choose our path. We know that we are complex beings, our emotions are part of who we are and we both absorb and reflect our life experiences; for our group breast cancer is a shared experience which has affected us all, but we are each individual and our experiences are as individual as we are. Our experience has helped some of us to focus on ourselves, to never lose hope, to see the bright side, to be true to ourselves, to value ourselves and to take time for that hero within. It’s also helped us to face those bad days, to overcome the negativity, but to accept that we won’t always be happy and smiling; that it’s fine to be sad sometimes, to be angry, to cry, to scream and shout if we need to.

Our inner hero was described as a many faceted diamond, the faces all different colours, some dark, some bright, reflecting our emotions, but whether dark or bright the diamond still sparkles. This is our inner hero, the woman who keeps going through it all, who has good and bad days, but never quite loses her glow. Sometimes we might find it hard to believe that there is a hero in there, sometimes we might feel we aren’t good enough, that we are failing, but if we stop for a moment and remember all we’ve done, all those things we are proud of, then we will see that inner hero sparkling like a diamond.