"Don't sweat the small stuff": The other side of Cancer

For many, it’s about living life to the full, appreciating all the good things and being grateful for all that we have. Living one day at a time, in the moment. Realising that life is something we want, no matter what. For others, despite anxiety, worry and overwhelm being features in our lives, there’s a renewed desire to live our best life, a clarity of vision like having a new pair of glasses. What we want - and perhaps equally importantly, what we don’t want - becomes clear and our goals crystalise before us.

 

Many of us struggle to say No but we’re learning, and once the word is said (the hardest part) everything falls into place, and this gives us confidence to be more discerning in what we sign up to. Some of us also want to say Yes more often. We aren’t used to asking for help, for going for what we want, again we’re learning. Making a fuss is ok, we matter. We are important, and we are enough. We can look after ourselves, put ourselves first, treat ourselves with compassion and love. We can be assertive whilst retaining our empathy and we recognise that we can actually look after others better when our own needs are met first.

 

Simplicity features for many members, in finding pleasure in small everyday things, feeling the love of family and friends, finding beauty in nature.

 

Many of us are finding ways to turn negatives into positives. We might be used to being the organiser, the one who pulls friends together for outings, and this might feel one-sided. However one member’s friend said to her ‘you are the light for those people who struggle to engage’ and so she can now see her role changed as a positive one. Other examples include being thankful for our lives rather than worrying about getting older, and appreciating our bodies, scarred though they may be, for what they do for us rather than for what we look like. We no longer take our bodies for granted, and we understand that our bodies and minds must be nurtured in order to flourish.

 

A phrase used by many of us is ‘don’t sweat the small stuff’. We find it easier to let go of trivia, to work out what matters. Many of us are more outspoken, prepared to stand up for what we believe in. We will not perform for others or be led like a sheep. However some of us find we are more sensitive than before cancer, although generally we worry less about the opinions of others. Many of us find we slip into old ways very easily, and when we are aware of this we may pull ourselves back but we don’t beat ourselves up about it.

 

There is a sense that we have slowed down, taking more notice of the world and people around us, but at the same time considered carefully what we want to do with our lives and sought out opportunities to make those things happen. We live more consciously rather than just letting life happen to us.

 

Of course we all have down days, when we feel low or unwell. We are wise enough to know that these will pass, and that in order to know our joy we must also experience our sadness. We are not glad we had cancer, but some of us believe it has made us a better person. New friendships are a key positive for many of us, and having the courage to move away from toxic relationships.

 

One member described herself as having become very ‘feelingy.’ Feelings may become more intense, our sensitivity to what is going on around and inside us heightened. Alongside this comes perspective and peace of mind. We have a desire to feel the full range of emotions and to build a happy and fulfilling life. Some of us have a disassociation with ourselves, feeling as though we are watching ourselves going through life, particularly our cancer treatment. We may want to change but perhaps we haven’t yet had time for what we’ve been through to sink in. Our members are at different stages of their cancer, some recently diagnosed and in active treatment, some many years beyond primary, some living with secondary cancer.

 

We recognise that our time on earth is short, and that it’s up to us to enjoy what we are given. We know that worry is fruitless and that we won’t look back on our lives wishing we’d worried more. We know that sharing our experiences helps us all.

The art of healing explained: BRiC's Collective Voice

Healing - the art of Kintsugi

In our Sunday discussion, we talked about healing and what that might mean within the context of living with breast cancer. The diagnosis and treatment of breast cancer leaves us scarred both physically and emotionally.

Naz explained that, for some of us, the physical damage from breast cancer and its treatments is long lasting, especially for those of us with secondary breast cancer who are living with this incurable form of the disease. She felt that in this context, physical healing might not be apt and so we concentrated on what healing might be in terms of the emotional aftermath of a diagnosis of cancer and how it affects our soul, spirit and motivation. This led to a powerful discussion of what healing might mean for us.

The trauma of a diagnosis of breast cancer was likened to post traumatic stress disorder (PTSD) by a member with close family experience of the condition after military service. So, how best to move forward in the light of such psychological damage? Many of our members believe that one powerful route to healing is acceptance of how we have been changed after diagnosis, both physically and emotionally. There is a strong sense that accepting our “new normal” is not the same as resignation or “giving in”, rather it gives a sense of peace. Being at peace with ourselves gives members a feeling of “being able to breathe” and for others, allows time to grieve for the changes to our previous selves.


Making peace is not just for ourselves. Common anxieties are the harm and the sadness our illness causes to our loved ones, especially for those of us with secondary cancer. Being at peace with ourselves means letting go of the guilt that our illness causes pain to others and, for some, allows those difficult conversations about the reality of death. Making peace acknowledges that we can feel sad and that our family members can feel able to feel sad too - and that it’s OK to feel that way.

It is not always easy to reach acceptance. Feelings of anger and fighting against our reality is common and is exhausting. Some feel that we are not helped by the language of breast cancer - described as “toxic positivity” by one member. Terms likened to fighting a battle and winning a war causes emotional distress, especially for those of us with secondary disease where the battle will never be won. For others, physical symptoms such as pain or fatigue cause a direct affect on emotional wellbeing. Many of us have multiples worries, not just cancer and it can be hard to separate those apart. Suffering multiple traumatic events in quick succession taxes resilience and is especially hard.

There is a strong feeling that healing does not happen in a linear progression but come in fits and starts and in many directions. It can be unravelled when we are taxed by new challenges. The phrase “Two steps forward, one step back “ was used by many. One of our members has a helpful reminder to tell herself of impermanence - that such feelings are not permanent.

An important step to healing and acceptance is to “self care” - making space for grieving, being kind to ourselves, saying “no” to others if needed and using grounding when it all feels too much. A member describes how she looks up at the sky and takes a deep breath. Some of us have found counselling and psychotherapy helpful. Self compassion is important. One member describes how her family upbringing has resulted in her feeling she must always put others first and that impaired her ability to heal herself.

It is felt that making peace with ourselves allowed a deeper connection with those friends and family members who are able to simply be with us. It can be a relief to stop trying to protect others and trying to do this alone.

One of our members introduced us to the Japanese art of Kintsugi, the art of mending broken ceramics by adding gold into the glue repairing the breaks. The analogy that broken parts can be made beautiful hit a chord with our members. We liked the idea of not hiding our scars but embracing them. One member told us that this meant she will be “enjoying my beautiful wonky life”.

Making peace with ourselves. Healing. Sometimes the process can be helped with the support of others who understand.

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