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

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.

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

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.

Mental Health Awareness Week - Naz (Founder of BRiC)

Mental Health Awareness Week 2020.

"Slowly, quietly, never giving up"

BRiC celebrates mental health awareness week 2020. It showcases its members' resilience and coping tips on what has helped in COVD-19 lockdown stressful times.

Every day, we will be posting a few of our members' messages, in the hope to show how we've embraced our anxieties as well as taken small steps to alleviate the distress and uncertainty we've faced. How we've exercised courage to face our fears, and how we've risen to nourish the wounds we've endured as a result of COVID-19 collateral damage to our treatments. The meltdowns, the emotional rollercoasters. We share how self-compassion has helped us when we've been low.

Mental health is important. Just as we nourish our wounds to heal we need to nourish our mental health to heal from the distress it faces in scary and uncertain times.

It is not an easy task, but in the middle of every difficulty lies opportunity, and that is what resilience is about. Finding that opportunity, and to keep going, slowly, quietly, never giving up.

Sending love and virtual hugs to all of our followers and the bigger world.

Naz xx (founder of BRiC)

#mentalhealthawarenessweek

#resilience

#COVID19

#lockdown

#breastcancer

#secondarybreastcancer

#BusyLivingWithMets

The healing power of our pets: BRiC's Collective Voice

Our Sunday discussion talked about Pets: our dogs, cats, fish, horses, and many more ….

Without exception, those of us who had or have pets emphasised how important their role has been in our well-being. ‘Unconditional love’ came top! Yes, our pets give us unconditional love, they are there for us, and listen to us without judgement.

Some of us talked about how our pets ‘knew’ something was wrong, how they sensed our vulnerabilities through treatment, they ‘knew’. They were by our side, they made us smile. They made us feel comforted. This companionship was especially noted during breast cancer treatment, where we were highly sensitive and appreciated unconditional love.

The benefits of having pets is documented by research that shows pets trigger empathy and acts of kindness. Their ‘unconditional love’ can be an excellent source of therapeutic comfort. Talking to them, listening to them, and caring for them bring positive effects to our well-being.

“My dog is the best therapy ever. I can't tell you how much we all love him. He makes me smile from the second I open my eyes. My fatigue is also lifting with all my walking 🐕 he literally is the best therapy ever 😍”

Walking our pets, cuddling them on the sofa, and feeding them help us gain the motivation, to get up and keep going. They give us a reason to carry on.

Our pets give us much fun, they bring us entertainment and make us feel relaxed. Here's a preview: 

Some of us talked about the saddening experience of our own pets getting cancer, those who had to be put to sleep, and how we missed their company.

If you are a woman in the UK with a diagnosis of breast cancer and would like to join our private group please message us here or leave your name in the comments.

#BRiCteam
#breastcancer
#pets
#resilience

The collateral damage of COVID19 on breast cancer treatment: BRiC's Collective Voice

“Who wants to have cancer in the midst of an epidemic?”

Our Sunday discussion last week talked about the collateral damage of COVID19 on breast cancer treatment and well-being.

For thousands of women awaiting treatment for breast cancer, COVID19 has caused considerable delays and uncertainty, with many breast cancer appointments being cancelled, postponed “indefinitely”, or “until further notice”. These have applied to key operations, chemotherapy treatments, follow-up scans, appointments, well-being courses and consultations. The waiting game this has produced means that we don’t know when our medical teams may come back to us to reschedule our treatments, scans and appointments. For some however, appointments have been moved to other hospitals or done over the phone.

The uncertainty has led to many of us feeling unsafe, insecure, and afraid of how these delays will be affecting our cancer status and cancer growth. Imagining women with secondary breast cancer, of course this uncertainty has a much bigger psychological and physical damage. What do you prioritise, cancer treatment or COVID19? There were concerns over whether women with secondary breast cancer have equal rights to access ventilations when there is a shortage of them?

It appeared that many of us had been sent letters and texts at different time points, some of us having only received messages recently to lockdown for 12 weeks. Inconsistency in the manner by which these messages were communicated has caused a great deal of distress for many of us. The mixed reasoning behind these messaging patterns has been a point of ill communication. We have turned to each other for reassurance and help. We have been calling helplines for clarifications and explanations. We are anxious for ourselves and for others in our position. We are in the dark and want more clarification.

Some of us explained that it could be a case of postcode lottery with some treatment centres open as usual and others not. But this has added to our confusion.

Our members believed that much more should be done about seeing to cancer patient treatments in these uncertain times, with much worrying consequences for those who are recently diagnosed with breast cancer.

It is an emotional roller coaster. How have we coped? We’ve been raising our concerns in the group, distracting ourselves doing DIY, waiting and waiting for some imminent solution to the chaos that a majority of us have found ourselves in. Many of us have found ourselves in incredibly vulnerable situations and are scared. The uncertainty by which services may return to normal is adding to this distress. We can only hug and hold hands virtually.

While we want our voice to be heard clearly, we also want to thank all of those who are doing their best in the frontline to help us. We are grateful and we live in hope.

If you are a woman in the UK with a breast cancer diagnosis and want to join our private closed group please message us here or leave your name in the comments.

#BRiCteam
#breastcancer
#mentalhealth
#resilience
#COVID19
#lockdown

BRiC's Collective Voice: Overthinking and how to Overcome it, April 2020

“Let It Go” – BRiC describes Overthinking and how to Overcome it.

In our recent Sunday discussion, we shared our experiences of overthinking the past (also known as rumination) and our fears about the future (also known as worry). We talked about how breast cancer has affected our thinking and how we react in the current climate when uncertainty over COVID19 impact can breed our overthinking.

We shared how overthinking can sometimes get the better of us, that we wake up at weird times in the night and get stuck in these repetitive negative cycles of thinking, how it can interfere with our sleep. Some of us described its effect as paralysing, holding us captive, how it can lead us to self-blame and grieve over our actions; make us feel low in self-esteem and confidence.

Some of us thought we had a predisposition to ruminate about the past, and/or worry about the future, because of our childhood experiences, and learning to feel guilty and self-blame. Having breast cancer also increases our tendency to overthink. Of course these tendencies are even more alive in situations where we feel alone and are in self-isolation. Yes, we have a lot of time to think and overthink, fear the future, and detail what we could have, or should have, done better.

Research shows that overthinking the past is one of the biggest predictors of later depression, and worry closely tied with anxiety. Interestingly, rumination discriminates, it is more prevalent in women than men.

A lot of our research shows that when we get stuck in cycles of negative thinking we are using up quite a bit of our cognitive resources that would have otherwise been used more efficiently getting stuff done. So, overthinking can slow the brain down, making us inefficient and sluggish. While rumination and worry can be natural responses of the brain, when they get excessive they become interfering, and circumstances which breed uncertainty and lack of control over our immediate situations can enhance our tendency to worry and ruminate. The brain is trying to make sense of what is happening.

What tips can help manage overthinking and help us gain some control?

We discussed that if we acknowledge it, give it some space, then it is less likely to dominate us. While this may sound counter-intuitive, as we would immediately want to fight it and push it aside, it can actually make our thoughts less threatening. Some of us have developed a laid back approach, others have found meditation and fresh air helpful. Structured breathing has also helped. Finding resources to be grateful and count blessings were also mentioned as useful strategies.

Our brain has an amazing capacity to learn and to adapt because its ultimate goal is to help us survive in the most effective manner. However when our brains respond, with fear, with overthinking, with sadness and so forth, they are signalling emotions that are critical to our experiences to our being as humans. The strength we want is to be able to embrace them and listen to them, perhaps let go of their controlling forces because then they may not be so loud once they are heard, they may not be so threatening when they are embraced, and we may not need to overthink, when we have accepted.

If you are a woman in the UK affected by breast cancer and would like to join our private support group please leave your name in the comments or message us.

With love #BRiCteam

#breastcancer
#secondarybreastcancer
#metastaticbreastcancer
#mentalhealth
#resilience

COVID-19: The World is Closed

Utterly superb, moving and brilliant, this poem by our own Deputy Head of BRiC, Anita Traynor, captures the essence of how we feel during this pandemic. Also, published on the Breast Cancer Art Project Website, here: https://breastcancerartproject.wordpress.com/2020/03/30/the-world-is-closed/

Sending love and wishes for good health to all of us.