Friday 9 April 2021

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

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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.

Monday 5 April 2021

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

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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.

Saturday 3 April 2021

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

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"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.