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.

"What we resist, persists"; BRiC on how we embrace our mixed emotions after loss

 

A recent Sunday topic for discussion focused on acknowledging the many mixed emotions we are feeling right now; for the losses we’ve experienced, coming to terms with how we feel, and being mindful of the pain we may be going through. This topic was very sensitively suggested by Naz after a hugely emotionally challenging week in which we all felt shocked and sad at the death of our wonderful administrator and friend, Bex Lewis.

Commonly expressed was the vulnerability that we all feel following Bex's death and how the impact of that is far-reaching. It triggers so much sadness and grief within us, as we mourn for the many precious lives that have been cut short. It’s only a matter of weeks since Fiona, another hugely valued and much-loved member of our administrative team died. We experience feelings of fear, disbelief, and sometimes despair as we reflect on what the future holds for each of us. None of us are immune to the possibility of secondary spread of breast cancer and for those of us currently living with the advanced version of this disease, the anxiety, and uncertainty about what lies around the corner is amplified.

We are each forced to face our own mortality every time we receive the devastating news that a member of our group has died but it’s reassuring to know that we are not alone in feeling emotionally vulnerable and fragile. Naz’s academic expertise and professional knowledge around how our brains respond to trauma helps to guide us. She is able to gently articulate the reminder, that as humans, our brains are hardwired to feel fear. This is part of our protective mechanism as we scour our internal and external landscape for danger as “a threat to our own survival has been flagged yet again.” Along with that comes the supportive message to us all, that “it’s ok not to feel ok.”

Each of us can behave harshly towards ourselves as we tell ourselves that we should be able to cope or better manage our feelings and emotions. Several of our members commented on how exhausted it makes us feel, as we try to muddle through the emotions in our minds. We acknowledged that talking to ourselves in a way that sees us trying to fight or resist our difficult emotions isn’t helpful. Instead, many of us are gradually accepting and understanding that if we embrace how we are feeling, this is much more nurturing and supportive of our wellbeing in the long run.

As individuals, several of us were able to open up and reflect on recent tragic circumstances and losses within our own families, friendship groups, and local communities. We are all one family here in BRIC but of course, we know we’re all part of wider families, friendships, and communities. There are many of us who have been recently trying to cope with feelings of sadness and grief in connection with experiences of loss closer to home.

The word ‘rollercoaster’ was used several times to describe the peaks and troughs of our emotional responses. Some of us are looking to a future that we know won’t include us and that burden weighs heavy as we present our ‘brave face’ to the world. The highs and lows of our emotions often manifest themselves in us becoming angry and frustrated at seemingly small things but our discussion highlighted a more accurate picture; that it’s not really the small things that are triggering us, it’s the layers that we’ve piled over the big things in our lives that see our emotional response bursting to be freed and acknowledged. This is upsetting for us as we reflected, that often, we don’t feel in control of our emotions however our discussion helped to shine a salient spotlight on this: we don’t have to put pressure on ourselves to be in control of our emotions; this is an impossible task. Blocking tears and burying things inside of us only serves to help our emotionally challenged internal landscape to become more overloaded.

There is an expression in mindfulness which is, what we resist, persists. This is a gentle reminder that facing all of our emotions head-on with kindliness and self-compassion is much more helpful in bolstering the vulnerability of our human experience as we encounter both pleasant and unpleasant feelings, thoughts and emotions. To accept only the pleasant aspects of our experience is to acknowledge only one-half of each of us.

The opportunity to talk, connect, and be part of our collective voice is life-enhancing and life-affirming. Hearing the message that all of our feelings are valid, that it’s ok not to be ok and that BRIC is a safe place where we can receive and accept support is very much felt and hugely appreciated.

“If we are physically hurt, loving our wounds, and nurturing them with TLC, makes them heal faster, ignoring them doesn’t.”

The life lessons, insights, and sharing that our Sunday night discussion provides help us to embrace all aspects of ourselves. We are held together by our experience of breast cancer and we are all heard. Sharing and communicating with one another helps us to feel supported, uplifted, and less afraid. We are helping one another to face all of our emotions.

Quality of treatment and early diagnosis: "A geographical lottery for some"? BRiC's Collective Voice

Quality of treatment and early diagnosis: "A geographical lottery for some"?

A recent BRiC Sunday topic discussed early detection of cancer and if we feel that our treatment has not been all we would have wished for, for whatever reason, how do we come to terms with that?

Our women, with primary or secondary diagnoses, felt this a most pertinent subject to discuss and the variation in our experiences was vast. Quite quickly, it became clear that not just a small but large proportion of our women had concerns about the lack of tools in early diagnosis, and their implementation in picking up signs of primary breast cancer and metastasis in secondary breast cancer.

Amongst our biggest concerns were failures in initial diagnosis (inconclusive tests not followed up) and considerable delays in getting diagnosed. For the former, some of the initial tests were unable to confirm a diagnosis and were not always followed up with a biopsy to produce conclusive results. Some expressed their fears around missing lumps on mammograms. Some expressed their disappointment of being ignored for tests when later they were diagnosed with lobular cancer, which is hard to diagnose in the absence of a lump. These all were believed to lead to the danger of letting tumours grow and metastasise. Given that breast cancer can express itself in all kinds of forms, it is worrying to hear so many accounts of late diagnosis.

Equally, a common issue experienced by many was the long interval between seeing our GP and getting tests for breast cancer. Some of our members believe they were ‘ignored’, that their ‘red flags’ were not seen, that their concerns were attributed to benign factors like age, muscle tenderness (or injury), fatigue and overdoing it at work. When in fact, they had breast cancer and it was undetected. For some an experience of a red rash was responded with ‘there’s nothing to worry about’. This coupled with the delay in administering tests led to a primary turning into a secondary diagnosis.

Some of us had experienced considerable delays from when we found a lump (for example in 2011, but not diagnosed until 2014). Similarly, we had a member say, “they could have done without the nearly a year of going back and forth to the breast unit and being told it was only a 'cyst’.”

We expressed our disappointment at why we had to resort to complaining to PALS to get heard for speeding up our treatment procedure or reporting our upset with our medical team. A member voiced their concern about a macmillan nurse who was not only unhelpful but said, “ I’ve never known or helped anyone as young as you with a diagnosis like this and I don’t know what to advise”. In a situation where fear dominates, the psychological ramifications of such responses can only run high.

We understand and acknowledge that breast cancer is a malicious and deceptive disease. Therefore, early scrutiny of signs is key to diagnosis and saving lives. Irrespective of what we experience, we put our trust in our medical team whom we believe will do the best for us. Breast cancer is also not an older woman’s disease, it can happen to anyone at any age. For younger women we believe there needs to be better education and vigilance on part of the medical team, for example discharge from the breast can be a sign of breast cancer but for a mum who’s just finished breast feeding this can be a benign symptom.

One member said it felt like a ‘geographical lottery for some’. There were many of us who believed that we’d had the best treatment possible, and that we were so grateful to our medical team for it. We had good accounts of attentive surgeons, oncologists and breast cancer nurses who looked out for us, who held our hands and who comforted us. Having said this, a large proportion did not have this experience. Those of us with better treatment regimens felt angry that we had to consider ourselves lucky to have had a smoother journey through treatment.

If you are a woman with a breast cancer diagnosis and would like to join our private support network please message us here and we will get back to you.

#breastcancer

#secondarybreastcancer

#diagnosis

#treatment

#resilience

#mentalhealth

Hope and what it means to us to be hopeful: BRiC's Collective Voice

 

“Hope gives us the gift of enjoying life”

A recent Sunday discussion centred around hope and what it meant to us. Hope was felt to be an essential part of life. Without hope, there is despair. One of our members shared the beautiful quote above, written by her father - “Hope gives us the gift of enjoying life”. Hope helps us find the way out of darkness.

Naz introduced the topic by telling us that hope is linked to resilience - hope allowed us to bounce back from difficult times. When we are faced with the diagnosis of cancer, our hope is shattered, especially for those of us told we have secondary breast cancer where cure is no longer possible. Facing such shattering news sometimes made us feel that it was hard to be hopeful. One member described the sensation of needing to “dig deep” to be able to be hopeful for the future. Many of our members told us that it was difficult to hope for long term goals or were worried that by doing so, they would be faced with disappointment. It was almost universal that it was easier to feel hopeful about short term expectations and by living in the moment. Sometimes it was difficult to be hopeful, especially when faced with overwhelming events and mental health difficulties. Naz explained in her introduction that we may need a time of hopelessness to find hope and resilience - one of our members called this as seeing “glimmers of light to sparkle hope”.

Some of our members had experienced taking part in a “Hope Course” through their local cancer service or through a charity - the majority of our members found these unhelpful - they felt that hope is such a personal experience which cannot be taught. Some felt that terminology around hope was difficult. One member heard the term “no-hoper” being used to describe a woman who had died from her cancer. Acronyms such as “HOPE - having only positive experiences” were disliked. More helpful were the kind word and support from family and friends, including those in private groups such as BRiC.

What do we hope for? We hope that our future will be OK and that we stay well. We hope our cancer will not return or that it will not worsen. We hope our families and friends will stay with us when things are hard. We hope for new drugs and new breakthroughs for treatments. We hope our next scan will be good. We hope to see our children achieve their milestones and we hope to see all the seasons again. We also hope that our families remain healthy, that the Covid vaccines work and that life will return to some level of normal again. We hope that the time will come when we can be with our friends and families again. As one of our members told us “We hope to find the joy in every day”.

How we feel about virtual appointments, Do we feel safer or forgotten? BRiC's Collective Voice

 

A recent Sunday discussion was all about virtual and remote appointments, how we feel about them and how to get the best from them. A very pertinent topic at the moment, suggested by one of our members, who asked “Do we feel safer or forgotten?”

One of the first points which became clear was that we felt we need to be more assertive than usual in order to ensure we are understood, that our concerns are taken seriously and that our questions are answered. It was mentioned that a lack of confidence could hinder this and leave us feeling ignored.

Many people suggested writing things down before the appointment; having another person in the room to take notes and remembering to ask for things to be repeated if needed. This was a problem often encountered by our members with hearing loss, a telephone call can be particularly difficult without the benefit of lip reading or seeing facial expressions. But the advent of the many video-call options has proved beneficial in alleviating this issue. In the current climate we generally have to attend appointments alone, without what is often a vital support, so being able to have someone with us during an online or telephone consultation can be a real positive of the “virtual appointment”.

Our experiences of online and remote consultation varied widely; many felt they were more prepared, having spent time prior to the appointment thinking about their expectations and needs. For GP “visits” filling out an online form before a telephone call often helps us focus on what exactly we want to discuss. Although some of us find the “tsunami” of questions on the forms overwhelming. For those of us who are at the early stages of diagnosis and treatment, the telephone or online consultations are not necessarily ideal, although often easier if we are further down that line. A common theme was a feeling that it was easier to discuss things openly because of a perceived distance between ourselves and the person at the other end of the call. Lots of our members access counselling, which has mainly now moved to remote sessions; for some this offers a whole new way of looking at things, enabling them to feel freer to discuss issues they perhaps found it hard to talk about face-to-face. Sadly, for others, the lack of face-to-face interaction left them feeling like the sessions were of little use.

One of the things which came up many times was the convenience of not having to travel, of avoiding busy hospitals and waiting rooms, public transport and of course the weather. Some of our members miss going to appointments, especially during lock-down when just getting out of the house can be a treat, even for the most mundane of reasons.

Having to chase doctors and be persistent is important, requesting follow-up calls and results and the amplification of our old friend “scanxiety” was often mentioned; but a positive outcome of the increase in online communication means that for some of us results are emailed much more quickly than when we had to wait for the next face to face appointment. One member only got a much needed appointment after breaking down in tears on the ‘phone; another said she thought she only got her appointment because she lost her temper – we are all under a great deal of stress from our cancer diagnosis, this is amplified by the current restrictions and tempers can be frayed. However, many members noted that they were aware of the exceptional pressure on the NHS and the knock-on effects it is having across the service. Concerns were raised in our group for the safety and well-being of the NHS staff, for their own mental health having worked through this crisis. There was vast praise for the teams who have adapted their systems and done everything in their power to keep our treatments and appointments running. It’s true things haven’t always run smoothly, for some people there have been delays and missed appointments, some will always prefer to see their practitioners face-to-face.

It was suggested that we, as members on an online support group, have an advantage in being familiar with IT and the capabilities of the internet, but perhaps for others it might be a huge challenge to access a video call. For those with sight or hearing loss, or a lack of confidence, preparing for and negotiating a video or telephone consultation could be stressful and upsetting.

The main advice which came from our discussion was that in dealing with this ever-changing system we need to prepare; write down our questions, think about our expectations, ask for things to be repeated or sent in a letter afterwards, have someone with us for support and try not to allow ourselves to be rushed through a consultation. It is also worth remembering some of the more positive outcomes, less travel and less time wasted in waiting rooms for example. For some, telephone and online consultations are too impersonal and will never replace face-to-face visits, particularly if a physical examination is needed. There was an underlying fear that we may never go back to the old way of visiting the doctor and a general agreement that sometimes, we need that personal interaction more than the convenience of a call. But we also agreed that with good preparation a virtual appointment can work well.