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.

BRiC's Collective Voice: Friendships in breast cancer

BRiC is: "Immeasurable". "A connection like no others understand". "Educational, supportive, and downright hilarious."

This week our BRiC members discussed the value of friends and friendship in coping post diagnosis and beyond into survivorship.

Psychological care is lacking post breast cancer diagnosis. While medicine is doing an increasingly good job in treating physical symptoms of breast cancer, the psychological challenges post breast cancer increase once active treatment for primary BC is over. In secondary breast cancer such challenges weigh even heavier.

Research shows that the mind and body work together, so it is vital that psychological well-being is prioritised to promote better quality of life as well as keep us stronger physically.

In our discussion, almost everyone of us voiced the value of online groups such as BRiC, the 'virtual' friends we've made, stronger even when we've met in person, because we have been able to connect even more. We've cried, laughed, and held hands. A recent meetup of ours in London was spoken of as feeling like "A warm blanket" "An extended family" "An assurance that we are not alone". As many of our members highlighted BRiC has been the safest group they've ever joined.

Moving Forward courses have also provided a platform for small groups of us to stay in touch and meet up, understand each other, when it has been hard to open up to family and cancer free friends. 'Bossom Pals', 'Breast Buddies' WhatsApp groups and other names we've used to treasure our friendship. The friends we've made through Maggies, Cancer Support groups, as well as Yoga for Cancer classes have helped us enormously too.

Sadly, many of us have lost our previous friends post breast cancer, and we've had friends who've abandoned us. As such, the value of friends we make post breast cancer diagnosis becomes even more pertinent.

We can be nervous when we first meet with our new online friends in person, but we soon feel connected and understood, feeling free to talk without being judged, and to know that our friends 'get it'.

So, here is a little 'thank you' to all of us for being there, online or in person.

If you are a woman with breast cancer and are living in the UK and would like to join our group please message us here and we will get back to you.

#BRiCteam

BRiC's Collective Voice: Uncertainty, and how we cope with it, Jan 17, 2020

‘Confronting, accepting, even embracing fear, according to research, can lower uncertainty. ‘

This week we talked about uncertainty since breast cancer: how it can affect us and what strategies we’ve found useful in managing it.

A key flash point for uncertainty is once active treatment for primary cancer is finished and we are no longer attending regular appointments which give us momentum in attacking our cancer. We have time to reflect and to worry. The enormity of what we’ve experienced sinks in and we wonder what we can do to prevent recurrence or spread. Cancer does not discriminate, it pounces on those who run marathons and eat their five a day just as regularly as it seeks out those who are not as healthy in their diet or as active. We realise that our future is outside our control, and this brings feelings of guilt, why me? And what if? If we are living with secondary cancer, as many of our members are, then stability versus progression becomes our uncertainty.

One of the most uncertain times in a breast cancer diagnosis is when waiting for test results. We have all experienced the agony of this, and a few days or weeks can seem a very long time. Once we know, the uncertainty of what’s next reduces and we can get on with whatever treatment our medical teams recommend to us. Some of us like to take control by questioning and researching our treatment plans, seeking the very best way forward for our particular situation.

How can we minimise the effect of uncertainty on our mental wellbeing? For some, distraction is the key, keeping busy, with work or other activities. The downside of this is that relaxation may become difficult as intrusive thoughts ruin any attempt at taking a break. For others, peaceful reflection, mindfulness and living in the moment helps. Walking in nature and creative hobbies are absorbing popular pastimes. To realise that everything is ok in this moment, right now, works for some, but for others the uncertainty simply overwhelms the present moment. Talking about our fears and sharing experiences helps many of us. Confronting, accepting, even embracing fear, according to research, can lower uncertainty. The brain is so powerful, and the more we allow our vulnerability in and think of it as an opportunity rather than a threat, the more we can shield ourselves from the anxiety inducing effects of uncertainty. For those of us prone to anxiety, the added uncertainty of a breast cancer diagnosis has the potential to be be crippling, but many of us take a pragmatic approach and ‘just get on with it’, not allowing fears related to cancer to add any extra weight. Some of us feel angry and bewildered, and increased anxiety can lead to depression. If we can turn these strong emotions to our advantage we can find a strength and determination to change our lives for the better.

Self-care is an aspect that we embrace in our group, and members report that this attention to our own needs and wants is key to our wellbeing. Some of us make a lifestyle change following cancer, as this can help us to feel that we are doing the best we can to look after ourselves. We might eat healthier, exercise more. Some of us throw ourselves into life with renewed zest, with a feeling that we want to make the most of every moment. Some of us have the urge to give back to life, and take on charity projects or volunteer. Some of us seek out help from professionals to improve wellbeing, this could be a counsellor or a cancer support group or course. Others talk to friends (although many of us find we don’t get adequate support from those who have not had cancer, and we often stay quiet with family as we want to protect them from the worry) and spend lots of time with loved ones, and still others prefer lots of alone time and make time to relish their solitude.

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

BRiC's Collective Voice: Our values before and after BC diagnosis; Jan 12; 2020

‘Now it is about living one day at a time and being kind to ourselves, perhaps we are more spontaneous’.

For first Sunday discussion of 2020 we focused on ''Values and Behaviours'' and how these may have changed since our cancer diagnosis.

Let's start with a personal values definition. Personal values are the things that are important to us, the characteristics and behaviours that may motivate us and guide our decisions. Living by them sounds simple in theory and it should be natural to live by them, but sometimes it's not so easy.

Naz mentioned how she challenged and supported a student's 'fate' during discussions with the university board and suggested that standing up for the 'right' thing to do is a sign of truly living by our values and behaviours, like fighting someone's corner! Being bold, assertive and determined to put ourselves first, we may be bolder and heartier and find laughter. However, crying out loud is not a weakness but shows our inner strength.
Some members enjoyed personal achievements or we enjoyed treating family and friends, make donations to good causes, which gives us a sense of belonging.

We tend to worry less about material things because they are less important, silly things don't matter as we are only human, and it’s about self-acceptance, self-compassion, self-forgiveness. People and their feelings are the real meaning in our lives.

Often, we enjoy our own company which is about self-care, self-love (compassion) and happiness.

Our outlook in the workplace changes and we take action for a better work/life balance as our life is precious, just as much as the lives of those we love. Watching TV all afternoon or treating ourselves is not laziness or being extravagant, we re-frame it as self-care.
We might value making a difference to someone who needs help to live their life well, as every second counts and we put things into perspective, a bit like looking through a different 'lens'.

Planning for the future used to be an activity that was part of our daily routine, now it is about living one day at a time and being kind to ourselves, perhaps we are more spontaneous. Taking risks which we may not have dared to take previously, it’s about bending the rules. We no longer save clothes for 'Sunday' best, we now enjoy wearing them every day, as we have learned that 'NOW' is all that matters.

Appreciating every breath we take, valuing simple things in life, embracing our existence, valuing our changes and learning to accept/live with our 'new normal'.

Thank you Jan Snape for the following poem.