Sunday 28 June 2020

Aware of cancer, but not defined by it! BRiC's Collective Voice

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Our Sunday discussion focused on how can we be aware of our breast cancer and not be defined by it?

Naz explained that a breast cancer diagnosis leaves us feeling extremely vulnerable, because these vulnerabilities are outside of our choice. We want to hide or shy away from these vulnerabilities, even though we know that cancer is a reality of ours that will not go away, we have to carry it forward by creating a balance between being aware of our cancer and not let it define us.

We have thoughts and emotions at times these can leave us frustrated, angry and anxious, they become part of us, so we learn to cope by not giving into them or to the matter of fact let our thoughts dominate and dictate our vision. Learning to acknowledge, understand, reason and deal with them helps our coping mechanisms, but that doesn’t mean they define us.

Cancer is not a choice that we decided to take on board, it has limited us and has caused psychological distress and the uncertainty has made us face our own mortality, the numerous side effects which we live with daily, have left us with a life threatening fear, so we keep marching on and try to keep working harder for ourselves, as we are often seen as being different by others.

We see cancer as something ‘bad’ which has happened to us, we feel overwhelmed with such life events and the changes experienced. Some of us see this as only one life event, we are the sum of everything else, we have to experience pain to know joy, it is part of our story and if it defines us then this depends on our choices and how we give them importance around the definition of who I/we are. It may be a label that describes us but acknowledging it gives us the power to control who I/we are.

Some of our members disliked being seen or portrayed as a ‘patient’, family/friends and colleagues mean well but often forget what we have been through, for some of us it is ok but sometimes we yearn for someone to hold our hand, a shoulder to cry on or just sit and listen to us without judgement, as we are still living with and beyond our breast cancer journey.



Many of us feel that the Covid-19 pandemic has added to our anxiety and fears for our future health and well-being. Going back to work in certain sectors is going to be an enormous challenge, we will find our inner strength, resilience and the willpower to live the best life regardless of what we are coming up against.

Some of our members found this a difficult subject as it is impossible not to have changed by a breast cancer diagnosis.
The A-Z of hospital appointments, treatments, surgeries, hair loss, weight gain and other body image visibilities when we look in the mirror, have left permanent reminders, which have had an adverse effect to a traumatic life experienced prior to our diagnosis.

Other members found this discussion topic interesting, as acceptance of a primary diagnosis was not given the attention it deserved, brushing it under the carpet and carrying on with life, after a secondary diagnosis came the realisation that we are not the invincible person we thought we were pretending to be. It makes you face your thoughts and fears, by not pushing them away, we learn to acknowledge and accept the diagnosis with compassion and kindness towards ourselves, rather than blaming ourselves. This in turn gives us the power to refuse to let it define us and the courage to stare it in the face every day, fear may take over but we do have a choice both physically and emotionally, we try to live in the moment as tomorrow is not promised.

Finding help and support is key to helping many of us, members found support groups like BRiC, yoga, meditation, exercise, mindfulness, in addition to the beauty of the outdoors and nature, breast cancer charities and many other forms of support from family, friends and colleagues.

Saturday 6 June 2020

Fear of recurrence and progression of cancer: BRiC's Collective Voice

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The comments that last Sunday evening’s discussion generated, really helped to give us all an insight into the range of feelings that the fear of recurrence and progression of breast cancer creates. It was interesting to read comments from members who’ve had a primary breast cancer diagnosis, recurrence of a primary diagnosis and those who've had a secondary breast cancer diagnosis. Viewpoints from each part of the spectrum are so valuable.

Some members commented that although the fear of recurrence never goes away fully, the longer the period of time that’s elapsed from a primary breast cancer diagnosis, the frequency of how often our thoughts turn to recurrence and progression diminishes. However, it was also acknowledged that often our fear and anxiety creeps upon us without warning after periods of time when we’ve had respite from it. Within the group, it’s acknowledged that this is hard to manage.

Another recurring theme was that even when active treatment for primary breast cancer has finished, seemingly minor aches and pains can lead to the bias of our brains suggesting that we have secondaries growing somewhere in our bodies. Perhaps this is due in part to the loss of confidence in our previously healthy body prior to the development of breast cancer and the vulnerability this creates, along with uncertainty about our future?

There was a feeling also that our family and friends, who only see the exterior of us and who can’t possibly know how we feel inside, want to think of us as being ‘fine now', because they don’t possess the insight into recurrence that we do. This may also be due, in part, to active treatment regimes finishing resulting in our physical appearance generally looking well, with often no outward visible signs of the cancer treatment we endured.


Our predisposition to anxiety prior to our diagnosis of breast cancer was referred to several times and this may impact upon our ability to cope with our anxieties and fears generally, following a diagnosis of the disease.

There was a feeling of sadness too around some of us never fully being able to feel confident about our health again because we cannot totally eliminate the possibility of recurrence and/or development of secondaries.

The emotional value of this group was also really highlighted by those of us who feel that others close to us will never really fully understand our fears because the breast cancer diagnosis didn’t happen to them. As a result, there is a shared empathy that exists within the group, which confirms the life enhancing and affirming nature of our very supportive community. This was very gratefully acknowledged.

With around half of our members living with secondary breast cancer, the experience of those members adds another layer to the fears around recurrence, in relation to how long treatment regimes can achieve stability in the metastatic growth of the disease, which drugs will be accessible in second and subsequent lines of treatment and the emotional toll this takes on our ability to lead a good quality of life. Fears around death and dying are inextricably part of that.

The COVID-19 pandemic has caused millions of people in the UK to feel anxious about their health; we, as a community of people within that, have had an extra layer of anxiety added to our already often-burdened mental wellbeing. Acknowledging that this is an extremely challenging time, which has led to many of us revisiting our fears of recurrence, is essential to help us build resilience. Acceptance that we are never quite the same person we were prior to our diagnosis of breast cancer is part of that, which does not mean to stay that we can’t feel strong, we just wear our strength and courage in a different way to those outside of the breast cancer community.