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.

International Women's Day, 2020, #eachforequal

Today is International Women's Day.

This year's slogan is #eachforequal, and we asked you what this means to you.

Here are your responses:

-Women demonstrating strength, resilience, caring and thoughtfulness when facing trauma

-Mutual respect, support and kindness. Together we are stronger.

-Diversity is what makes us equally strong

-Treat our choices equally when it comes to treatment

-Mutual respect and support

-Not discriminating against primary and secondary breast cancer

-Equal rights at work and for employment

-Equal rights for insurance

-Equality in care after treatment

-Equality in treatment plans

-Equality in treatment and access to treatment

-Equal support for women with secondary breast cancer

-Equal support for younger women

Our private group supports women living in the UK who have a breast cancer diagnosis. If you would like to join please leave your name in the comments or send us a private message.

World Lymphoedema Day, 2020

Today is World Lymphoedema Day, and BRiC is raising awareness of this debilitating chronic disease in breast cancer.

Lymphoedema which means excessive heavy swelling of body tissue, affects around 20% of women with breast cancer and is known to be a side effect of treatment. Excessive swelling in the arms means that the lymphatic drainage system isn’t working properly. It is a chronic disease that can be debilitating.

Our members today discussed how Lymphoedema can occur any time after treatment, up to many years after surgery in fact. It can be depressing when normal sleeves won’t fit. Infection of course is a horrid side effect, making us ill as a result.

We have been able to manage Lymphoedema by massage and cream. Some of our members also reported that weight and resistance training have helped loads. Specialist sleeves are also available. Thank you to all the nurses who have helped us deal with Lymphoedema.

BRiC's Collective Voice: "Let's Talk about Sex" or lack of it; 23rd Feb., 2020

‘Let’s talk about Sex’, or lack of it. How breast cancer impacts our sex lives.

“I don’t know where my libido is?” “I used to be sexual and have a full on firey sex life before breast cancer, but that has all gone now” “Sex? It’s all in the past.”

There are two major ways by which breast cancer affects our sexual health: it can demolish our libido, of course due to hormonal deprivation, and it can cause pain, atrophy, and soreness, probably also due to estrogen deprivation, so the two are not mutually exclusive.

“It is so painful that I try and put it off” “I cry after having sex” “ The creams and lubricants are OK but don’t make me feel sexy” “It is impossible at times.”

Then there is the issue of self-esteem and self-confidence, that is shattered through physical changes. Fatigue does not help either.

“I don’t look sexy”, and “I don’t feel sexy”. “surgery has left scars” “ I don’t feel confident about my body”. “I am exhausted”.

Failing to feel like what we used to be and what breast cancer has left of us in that department can impact heavily on our sexual health and our relationship with our partners:

“We have come to terms with it, that sex is something of the past.” “I think that he will probably leave because of this” “He is understanding but I do worry” “ I try and explain but it was so long ago that he isn’t convinced its psychological”.

For those of us in search for a new partner it also takes its toll:

“I’m not sure I’m going to find anyone who would put up with this”, “It is difficult to explain.”

The list continues…..

Sexual health does define a major part of our womanhood. The effects are multidimensional and can impact our self-esteem. For some of us the thought of having sex is terrifying, the pain that it leaves us with prevents us from initiating sex and as such we can get into a trapped cycle of avoidance.

The topic itself is not spoken about, it is not discussed with our oncologists as a possible side effect, in fact, the majority of us feel the same: that we cannot talk about it. The lingering effects are explained through Tamoxifen and the AIs that hinder sexual health considerably.

Women’s sexual health post breast cancer should be given the credit it deserves. In research you can see it discussed in passing, as part of a bigger package of problems we face, but it deserves its own stand as it defines a big part of who we are. There is a difference between choosing not to have sex and not being capable of having sex, because with the latter we have little to no control over it.

If you are a woman in the UK with breast cancer and wish to join our private psychoeducational group please message us here.

#BRiCteam

Avoidance: Repression and Suppression

To repress means moving something painful away from conscious experience. In fact, the brain does this automatically when the emotional pain is too much to handle. Avoidance, distraction, replacement, dissociation, all involve repression. When practiced, it becomes a habit and we do it almost spontaneously.

Naz told us about some work she had previously done to try and understand the brain and physiological mechanisms behind repressive coping, a coping style used by people who believe that they are not anxious, but physiologically, they still may show signs of anxiety, especially in stressful situations. When we use repressive coping we are using an avoidant coping style to deal with stressful and upsetting experiences.

 

Does repressive coping help?

 

Research on the brain shows that people who repress, and downplay their emotions, process even greater levels of threat sometimes greater than those who report high anxiety. Avoidance also weighs heavy on brain networks. So, physiologically there are signs of distress.

 

Repressive coping is regarded a possible risk factor for physical disease as well as a consequence of chronic illness, and as such is very relevant in breast cancer. Repressive coping is linked with cancer, cardiovascular disease, crohn’s disease, hypertension and so forth. While most of the evidence is correlational, recent work is trying to establish a causal relationship, especially with chronic stress.

 

Our members discussed how they’d used repressive coping. Almost everyone agreed that they repressed and hid their true feelings and fears at time of diagnosis and through treatment. Many of us felt completely numb, due to the shock, in fact we didn’t know what we were feeling. Numbness is another form of repression. Through time however, the repressed feelings are rising to the surface. We can feel confused. We become aware of those feelings but we find it difficult to deal with them. There are mixed feelings. We feel mentally exhausted, fatigued, we are fearful of crying because ‘I may just cry forever’, ‘I just want to scream’. The pain is difficult to digest, and so it may express itself through ‘mini melt-downs’, ‘not coping with side effects efficiently’.

 

The brain can learn how to let go, and help us regulate our emotions. Repression brings rigidity, and hinders brain plasticity. Talking helps, writing helps, exercise helps. Breathing helps. Crying is a good release. Reaching out for help, helps! Facing our fears and embracing them can work. Many of us reported that counselling has helped, but the process of healing for some of us can be longer. What we agreed on is the awareness of those feelings, and that is a major first step.

                            

So, the question of whether repressive coping works or not has an easy answer. Sometimes repression can work in the short term, but the longer term effects on our physiology take a toll.