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.

BRiC's Collective Voice: BRiC on the Coronavirus; March 2020

How are we dealing with the coronavirus hype and implications?

Our discussion was three days ago, and as I write this, things have moved on apace. By the time you are reading this things will have changed again. More health protection and economic measures are expected daily. We live in unprecedented uncertain times.

This virus has the potential to affect every one of us, and for many in this group who fall into the high vulnerability category, we are being catapulted headfirst into fear and anxiety mode. For some of us who are some months or years on from diagnosis, this means we are back in panic mode and this feels like being diagnosed all over again. For others, currently undergoing treatment, we feel particularly vulnerable as we are classed as high risk. And for those with secondary breast cancer, not only do we have the fear the virus poses to us, but our daily lives are restricted and we cannot live out our lives as we would wish given that we may have have limited time left.

The media bombards us daily with information but a lot of it is untrue. The pandemic is being dealt with differently in other countries and this makes us nervous. We have worries for loved ones both near to home and far away. We feel helpless, as for many of us all we can do is protect ourselves as best we can, for some this means self-isolation, and hope for the best.

Some of us have been in trauma mode since the outbreak began, others are only just beginning to realise the seriousness of it all. Many of us are taking steps to protect our mental health as well as our physical health. Our feelings veer from blind panic to calm self-assurance that we will cope.

As a community we all know fear, we are familiar with that anxiety that comes with knowing our lives are threatened. The stress flight or fight response kicks in and our brains cease to function logically. We lie awake all night fretting, we don’t look after ourselves properly, and this affects our general health and immunity. We may thirst for knowledge but find it hard to discriminate on what we find out. Stockpiling food and medicine may be something we witness, this can be an attempt at taking control. Going into hypervigilant overdrive is necessary to survive, and logically we know it won’t last forever.

This BRiC discussion gave our members the opportunity to express their fears and hopes, for themselves, their loved ones, their livelihoods, their uncertain futures. Some expressed disappointment at holidays cancelled, visits from loved ones postponed, but for most of us we’ve done this before, when we had to put life on hold for our cancer treatment. Many are concerned about the psychological effects of prolonged isolation, for those who live alone and for those who have elderly relatives who live alone. Again, many of us were pretty much isolated for months while having treatment, to protect our immune systems while having surgery, chemotherapy and radiotherapy. We had no choice then, we have no choice now.

We will be ok, we will cope, because we are resilient and we are strong. We have each other to talk to online, and this is hugely helpful.

BRiC's Collective Voice: When emotions become strangers, March 2020

When we can’t find the words to describe how we feel…

The complexity of feelings after breast cancer can be difficult for us to articulate. If we can name something, label it, that something can seem less threatening, more controllable. If we can describe our feelings, which may include numbness, fear, anger, bewilderment, anxiety, guilt, depression, we can understand ourselves better. Some schools of thought suggest that there are only a small number of basic emotions: joy, fear, sadness, disgust and anger and that other emotions are a variant of these.

We may shut down in the face of trauma, and our emotional systems become hyper-vigilant as self-preservation. We are encouraged to be overwhelmingly positive and grateful, but we often don’t feel that way, and this means we find it difficult to make sense of how we feel. Common media language for those of us with cancer includes the battle of the warrior, our fight against the enemy disease. For many of us, this isn’t how it feels, and we dislike the idea that losing the fight implies failure for those who lose their lives to it. Many of us are also uncomfortable with the term survivor, feeling it to be a jinx term. We don’t feel brave in facing our treatment, we have no choice.

For those of us with secondary breast cancer, the plethora of emotions is complex, but for some, a sense of acceptance can lead to a feeling of calm. Fear is, of course never far away, but faced with a limited future, the priority becomes spending time doing what we want and with people we want to be with.

While feelings of numbness can dominate at times it is worrying as buried emotion can lead to physical issues. On the other hand, some of us have found that our cancer diagnosis has led to a deeper intensity of feeling love and joy, even though we may feel angry and fearful at the same time. Still others find that distancing ourselves from our feelings, as if the cancer is happening to someone else, helps.

Describing how we feel to others, particularly our loved ones, may also be difficult. How do we help them understand what it feels like, when they haven’t experienced it themselves? It can be very hurtful when others are dismissive of our feelings, and although this may not be intentional, it’s common for others to misunderstand us and for us to feel inadequate as we try to explain. Many of us have stopped talking about our cancer for this reason.

One of our members took the opportunity to name the feelings in the accompanying graphic: perhaps you would like to have a go?

‘I could name them all....feeling small & scared (little one), angry (dark at the bottom),

confused & churned up (yellow),

In turmoil (pinky swirl), enveloped in love (white fluffy) & resigned (blue).’

Another member gave us a link to uncommonly used complex emotions, which you may find interesting:

https://www.facebook.com/markmorfordyes/photos/a.280163543794/10153090820248795/?type=3

Being able to share our feelings with others who understand was seen as very helpful for all of us, and our private group, which is open to all women living in the UK with a breast cancer diagnosis, is a place where we share the light and the dark. When we don’t know how to describe how we feel we can reach out for help, use whatever words we can find, and know that others will be there with a hug and a kind understanding word. We also know that we are not alone.

BRiC's Collective Voice: How to look feminine during treatment, March 2020

A recent Sunday discussion focused on how our members manage to look and feel feminine during treatment, we shared tips on what works for us and discussed whether it is important to feel feminine during treatment.

For many of our members the first hit to their femininity is hair loss through chemotherapy. A sudden and complete hair-loss affects the way we view ourselves and how we perceive that others see us. Add to that, the probability that surgery will leave us disfigured to a greater or lesser extent, then it is not surprising that we feel less feminine, less attractive and less confident.

Many members said they feel glamorous in their wigs, wearing styles that they would not have contemplated before, others hate their wigs and prefer hats, scarves and buffs, others choose the bald-and-beautiful look, embracing the liberating feeling it brings. But for every member who finds joy and confidence in their wig or hat, there are many more who feel the loss of hair affects them deeply and their confidence has taken a huge hit.

Lots of our members shared tips around using make-up, bright colours, lovely lipsticks and jewellery to boost confidence during treatment. Those who had attended a Look Good Feel Better course, or similar events, said they enjoyed the tips, such as how to draw on eyebrows. Others suggested using positive affirmations, looking in the mirror and seeing your own beauty; remembering to smile was a popular tip. One member said her method was to simply put her head down and power through, there is time enough to worry about our femininity after treatment.

Our private group has members with both primary and secondary breast cancer and for those with a secondary diagnosis the effects of ongoing treatment can mean their sense of femininity is hit even harder. They may be facing a constant battle with side effects: hair loss or thinning, weight gain, pain and bloating, were just some of those mentioned. For all our members the general tiredness adds to the struggle. Lots of us want to feel “normal” more than to feel feminine; something made difficult by the side effects of the drugs. Weight gain, premature menopause, loss of libido and loss of confidence affect almost all of us to some degree. For those of us in a relationship, having a supportive partner can be a boost to our confidence, although some members confessed to a feeling of disbelief when their partner tells them they are beautiful. Those who are single often worry about how potential partners might see us in our new, less feminine state.

Some of us who weren’t “girly girls” before cancer found the urge to enjoy what was left of their femininity, things that weren’t important before became a high priority, our hairdresser often became our new best friend. Keeping up with our routine helped many members, having a manicure, wearing make-up, buying nice clothes and getting dressed up helped to maintain that sense of self. For others it was a relief to be able to let those things slide and enjoy just being ourselves with no concern about how we looked.

We wondered if the pressure to feel feminine could be counterproductive. Side effects can be a long-term thing, is it feasible to keep on putting that pressure on ourselves to look and feel feminine when we are exhausted from the effort? One solution might be to find a way to be kind to ourselves rather than concentrating on how feminine we feel. Others thought that focusing on our femininity helps us to tolerate the treatment and its effects.

If you are a woman in the UK with a breast cancer diagnosis and would like to join our private group, please add your name into the comments or send us a private message and we will get in touch with you.