Weekly Discussion Summary ~ Depression

This week our Sunday discussion focused on depression.

Depression. It's a word that has come into our everyday language, sometimes in ways which are not so helpful. We all feel sad, we all feel low, but when someone experiences depression, these feelings persist for weeks and months. Depression is not a sign of weakness. It's not something someone can simply "snap out of."

Clinical depression affects people in different ways and takes many forms, including feeling sad and unable to cope with everyday life, feelings of pointlessness, desperation and in severe depression, suicidal thoughts. It can cause physical symptoms like fatigue, pain, insomnia and loss of appetite too. Depression can be a lifelong problem for some, with episodes being triggered by stressful life events and experiences which are traumatic - like a diagnosis of breast cancer. Depression can also come in cycles, seemingly without any particular trigger.

We poured our hearts out, women with a primary breast cancer diagnosis and women with secondary breast cancer, sharing some of our personal experiences of depression. We described dark days with no zest for life, a weariness that took away our motivation to carry on.

Many of us described becoming depressed once active treatment had ended; the hospital appointments cease and, with them, the structure that kept us going; everyone around us expects us to be back to our old selves; it’s time to go back to work or other routines. However, we feel shaken and lost, our confidence shattered by the whole trauma of invasive surgery and treatment. It’s easy to see how depression can either creep up on us, or hit suddenly as the enormity of what we've just been through hits home.

The debilitating effects of hormonal treatments taken by so many women, or, early menopause symptoms, increase the psychological demands we face, causing us to experience mood swings and fatigue at a time when we are already psychologically vulnerable.

Women with secondary breast cancer face unique psychological challenges - living with the knowledge that we cannot be cured, our treatment is ongoing and our regular scans and checks cause great anxiety as the quest to halt progression continues. We cherish every day, but we can also experience bouts of deep depression as the relentless treatment regime punishes our bodies and minds.

Depression can make us feel worthless, it can strip us of all joy in living. Fortunately help is available. Many of us shared that we had found talking therapies such as counselling, psychotherapy, Cognitive Behavioural Therapy and support groups helpful. Exercise - in many forms - can also be helpful. Anti-depressants and sleeping tablets have their place too.

Depression can mean we have to rest and take time away from work and possibly family leading to isolation and contributing to feelings of hopelessness. Some of us spoke about times in our lives when we felt we could no longer carry on. We also described how something or someone prompted us to reach out for help, to seek support from professionals, family and friends to get better.

For many of us, a first encounter with serious ill health or depression taught us how to look after ourselves. We learn to spot signs of sinking into depression and seek help to prevent it before it gets a stronghold. We learn to practice extreme self-care, and to reach out to each other for support.

Naz explained that depression presents an evolutionary paradox to scientists. Is depression a cry for help? Is it an attempt to conserve resources? Does it represent an exhausted brain? Is it a consequence of chronic anxiety? Is it a state of no hope, helplessness, and repeated failure? There is no future to look forward to. Is it a chemical imbalance?

Depression, Naz told us, is all of these things, but mostly it signals an exhausted brain, a brain so full of fear, anxiety and negative and traumatic thoughts that no room remains for cognitive thinking and common sense is replaced by irrational hopelessness. The neural pathways involved in goal driven behaviour are no longer working efficiently, and there is a reason for this. They can’t.

However desolate depression makes us feel, there is always a way back up. Naz told us how we may learn to thrive following depression, as our severely depleted brain resources slowly but surely return to normal. We can, with the help of others, bring ourselves back from the brink by training our brains to respond differently, by practicing cognitive focus.

There may come a time when we can use our depression to our advantage, beating it down with determination and our will, our desire to overcome adversity and thrive again.

This article highlights that we can learn to shake off depression, we can grow through it and beyond it to a place of strength where neither depression nor cancer defines us. This is our resilience.

https://theconversation.com/thriving-after-depression-why-are-scientists-ignoring-good-outcomes-98288?utm_medium=amptwitter&utm_source=twitter

If you are a woman living in the UK with a breast cancer diagnosis and you would like to join our private group please send us a private message via https://www.facebook.com/resilienceinbreastcancer/

Weekly Discussion Summary ~ Coping with the Heat

We are currently experiencing a glorious spell of hot summer weather here in the UK but how does it impact on us?

Our discussion this week looked at how our members, women with primary or secondary breast cancer, cope with the heat.

Though a few of us revel in the sunshine, for most, these long, hot, humid days are bringing some discomfort, and for a few, misery.

For those undergoing active treatment there are particular problems with heat exacerbating side effects from chemotherapy such as nausea, dizziness and headaches; from radiotherapy, where the skin may burn (not dissimilar to sunburn); for those of us on hormonal treatments, or with menopausal symptoms, hot flushes become more severe, disrupting our sleep, increasing our fatigue.

Many of us talked of feeling particularly exhausted during hot weather, and few of us enjoy sunbathing following a breast cancer diagnosis, often worrying about areas of skin that have been treated with radiotherapy or surgery being exposed to the sun. For some women, the shivery cold feeling brought on by some chemotherapy treatment is made worse by contrast in the heat, particularly as everyone around us is enjoying the outdoors.

Those of us with lymphoedema and have to wear compression sleeves suffer from increased swelling which can also lead to rubs and blisters and wearing our uncomfortable compression garments can feel unbearable. Women who have lost their hair from chemotherapy and who are wearing a wig commented that wigs are also extremely hot and uncomfortable to wear in the heat.

A few of us reported developing acute sensitivity to sunlight following chemotherapy, (polymorphic light eruption), others suffered prickly heat rash.

We shared our many tips on coping:

* Products such as chill bandanas, ice towels and pillows.
* Drink, drink, drink! Freezing water bottles to retain the chill longer, drinking fruit infused teas and waters (mint, cucumber, lemon), elderflower cordial, and lots of ice-cream!
* Hand-held fans and desk fans can be a great help, as can wet wipes, and little cooling sprays which can be bought as proprietary products or made up at home with a spray bottle and some water.
* Light, loose clothing made of cotton or linen was recommended, also light cotton undergarments, and sports clothing made of fabric designed to wick away sweat.
* Hats and parasols are useful accessories.
* If travelling on public transport, avoiding peak travel times and always carrying water.
* Resting during the hottest part of the day and increasing activity when it's cooler, like early morning and evening.

Some of us like all our windows open night and day to bring in whatever breeze might be outside, others are concerned about insect bites as these can be problematic to women after breast cancer, particularly for those who have lymphoedema. A bite can easily become infected as the body cannot fight the toxins efficiently without an active lymph system. Insect repellent alongside a high factor sun cream may help prevent the midges from biting.

Despite the discomfort, most of us said that a bit of sunshine helps lift our mood. Maybe it’s just that we’re having too much of a good thing this year!

If you are a woman living in the UK with a diagnosis of breast cancer and you would like to join our private group please send us a private message via the facebook page 
https://www.facebook.com/resilienceinbreastcancer/

Weekly Discussion Summary ~ The New Normal

"The "new normal" also means facing a new reality. One which we didn't choose."

What is the "new normal" after a diagnosis of primary or secondary breast cancer?

This was the question we asked in this week's discussion.

People tend to speak of the "new normal" in relation to the process of adjusting to life after a cancer diagnosis, often when active treatment has finished, when the physical demands on us have receded somewhat, allowing us time to reflect and to "find our new normal."

In our experience, the phrase "new normal" is actually an ambiguous term used to convey somewhat contradictory ideas - firstly, a fresh way of being, suggesting the idea of a new start, and secondly, the process of adjustment to a reduced or more limited way of being and learning how to manage the different roles that make up our identities.

Our discussion, which included women with primary and secondary breast cancer, highlighted that one aspect of our "new normal" meant living according to our changed values, changed health, changed energy, perhaps with a new appreciation for what was important to us, and was coloured by gratitude and opportunity. It was idealistic. It was fruitful.

The kinds of things we might hear or say to ourselves from this perspective are - "You must really appreciate your life now." "Go and be happy." "You have a second chance." "Make the most of your life."

However, this is just one part of how we feel. Alongside our desire to make the most of our life and explore new opportunities, we are also often dealing with ongoing side-effects, and, anxiety about recurrence or progression of disease. Some of us were also dealing with particularly challenging physical and psychological side-effects as a result of treatment, or secondary breast cancer.

These different factors meant our actual experiences of "normal" were a bit different. Some of us felt we had lost sight of what "normal" was any more. Others of us experienced a gap between what we expected or hoped for ourselves, and our new reality. Some of us were striving to return to previous ways of being, such as resuming careers, whilst others had been forced to make significant changes and the "new normal" meant a new home, job or relationship.

Naz explained that psychologically, the new normal is a hard process of establishment, to try to reach some kind of stability that is inevitably still evolving through time. We have changed, yes, but the changes are not a means to an end and are ongoing and evolving.The "new normal" is not static but is a dynamic process and at times we can feel at the grip of forces outside our control.

The "new normal" comes with gratitude. We have insights and a belief that we can get the most out of every day. It can bring opportunities that only we can appreciate. Ones that make sense to us.

The "new normal" also means facing a new reality. One which we didn't choose. It brings limitations that beg us to dig deeper, either to do the things we once took for granted and are now a struggle, or, to make changes so that we can continue to function meaningfully in our our lives. We have to learn how to make things work for us within the changed frameworks we have.

Are we more challenged?

Yes we are. We face challenges that are tough to handle. Challenges that come with acceptance of our limitations and in tackling them. We continue nevertheless.

We were not sure how to define our new normal. We decided we would not call it "normal" as it's unpredictable, a challenging normal and lacks stability. We thought one of the most appealing aspects about our "new normal" were our opportunities to challenge and change, for the better, and to recognise that we are ever changing.

If you are a woman living in the UK with a breast cancer diagnosis and would like to join our private group, please send us a private message via https://www.facebook.com/resilienceinbreastcancer/

Weekly Discussion Summary ~ Self-esteem

In this week's discussion, we looked at our self-esteem and asked ourselves how it had changed after our diagnosis with breast cancer

Self-esteem is commonly seen as being about self-perception. And self-perception at least partly depends upon how others see us, how we fit in, and how comfortable we feel in our intimate and social relationships.

A diagnosis of primary and secondary breast cancer can shatter our self-esteem. We can feel physically disfigured by harsh treatments like surgery, chemotherapy and radiotherapy and we are battered by the emotional storm of cancer.

As we know, 'chemo-brain effects' and our problems with cognitive skills can last for many years. Yet we all know how important it is to be cognitively able in social, personal and work settings. Slips in memory and lapses in concentration and attention seriously undermine our confidence.

We are changed by breast cancer and it is natural to compare who we are now to who we were before we were diagnosed. We can sometimes be upset because we are not the same; the changes were enforced, not chosen. Trying to come to terms with the new ‘normal’ is hard and takes effort. When we have problems identifying with ourselves, our self-esteem is affected, we are trying to make sense of who we are.

Social isolation can follow because we find it hard to communicate, we find people don’t really ‘get it.' Some of our relationships break, others are supportive, but can be stressful. Our partners have to come to term with our changing self-esteem.

One of the biggest effects of breast cancer is on our intimate relationships. Menopausal symptoms can lead to difficulty in being physically and emotionally intimate.

Is it possible to reverse the effects of breast cancer on self-esteem?

We were not sure.The answer is not easy. Do the coping styles we used before our diagnosis help us? Or are we too tired, too fatigued, in pain, and too much in fear of cancer coming back or progressing? We can become resilient after trauma, but we do not easily find the resources - we are running on empty.

Our discussion, which included women with primary and secondary breast cancer, highlighted the myriad and unique ways we lose and find our self-esteem. Some of us felt we had never had self-esteem, or had lost it completely as a result of breast cancer. For others, the impact of weight gain and surgery had profoundly impacted on our sense of womanhood and our ability to be sexually intimate. Some of us described how we had found self-esteem in other areas of our lives, like work, or through new interests and outlets. Others described discovering self-esteem through changed values, for example we no longer cared what others thought because we were dealing with secondary breast cancer, and this knowledge had freed us (as well as terrified us). For a few, the crisis of breast cancer had led to a complete transformation of our 'selves', or, the discovery of a new appreciation of who we were - in all our vitality.

In terms of research, Naz explained that one of the biggest limitations in breast cancer research is the lack of prospective studies: those that can compare factors like self-esteem before and after a diagnosis of breast cancer. Most research is retrospective - it looks into the past through the eyes of the present, and this brings with it a huge element of bias.

Self-esteem after a diagnosis of breast cancer, we learned, becomes about how we can learn to nourish our battered bodies and our minds, how we hug and love ourselves, how we find beauty and strength in our flaws. Self-esteem doesn’t define us, we do. And we are amazing.

If you are a woman living in the UK with a breast cancer diagnosis and you would like to join our private group please send us a private message via the facebook page 
https://www.facebook.com/resilienceinbreastcancer/

Weekly Discussion Summary - Anxiety

The See-Saw of Fear

In this week’s discussion we talked about anxiety - a feeling of worry, nervousness or unease about something with an uncertain outcome.

A diagnosis of breast cancer brings with it huge fears and uncertainty: women with primary breast cancer are faced with the fear of recurrence; women with secondary breast cancer are faced with the fear of progression. Regular checks and scans remind us of our vulnerability, every ache and pain causes worry that ‘it’s back’ or has spread further.

The threat to life that cancer represents is ever present and anxiety becomes the background music of our lives. Anyone who has struggled with anxiety knows how debilitating it can be, and if we are someone who has always struggled with anxiety, our mental state becomes one of heightened anxiety. It is exhausting.

Sometimes we recognise and face our feelings, sometimes we cut off from them and yet we experience a subconscious reaction to a perceived threat, whether real or imagined. Anxiety is as real as a post-traumatic stress and as we know, a breast cancer diagnosis is a traumatic event in our lives.

Many of us had experienced anxiety all our lives. For some, the discussion itself highlighted how anxious we feel. Some of us could accurately describe the physical sensations of anxiety within our bodies. Some described pushing away anxiety with distractions, such as keeping busy. Some tried to embrace the worry and accept it, whilst striving to let it be.

A few of us described panic attacks, others a continuous underlying feeling that something awful about to happen. Physical symptoms included heart palpitations, shortness of breath, sweating and nausea. Some of us worry about every little thing. Others no longer ‘sweat the small stuff.’ Most of us experience extreme anxiety around the times of scans and anniversaries. For some, anxiety is so high that it interferes not only with our hopes and dreams but day to day activities. Our advice to anyone in this position is to seek professional help.

Naz explained the way the brain adapts to persistent fear, preparing the body to expect danger and meet it, triggering the primitive flight or fight response - to run, to fight, or perhaps freeze. We are, by default, vigilant. She used the image of a see-saw to explain the way the cognitive and emotional brain systems interact. At one end of the see-saw, in an anxious state, the emotional system dominates and weighs us down. At the other end of the see-saw, the cognitive system lets go in order to prevent becoming overwhelmed. Resilience can strengthen the cognitive system to gain weight as it moves towards calm and rational thought, allowing the see-saw to swing back into balance. This is not about numbing, controlling or avoiding, but a robustness which promotes neural plasticity and supports good communication between the cognitive and the emotional brain systems. Resilience helps us to bring flexibility to the see-saw. It is a key adaptive factor in coping, indeed to survival, and Naz’s research is highlighting the possibility of building a ‘cognitive vaccine’ to protect against the damaging effects of anxiety.

We shared our coping strategies: mindfulness and meditation, deep breathing, practising realigning thinking by keeping an emotional diary, simplifying our life by reducing responsibilities where possible, taking time for ourselves and practising self-compassion and self-soothing. Hobbies, exercising and being outdoors and in nature can also help. One suggestion was to focus the attention on something else – drinking a cool glass of water through a straw with closed eyes. Another was to embrace our anxiety as one would comfort a fretful child.

A question was whether breast cancer had caused or heightened our anxiety because we face our mortality or whether, because it leads to a change in our values, an increased sense of what’s important to us in our lives. Letting go of things that are no longer important and discovering who are in the aftermath brings another set of challenges.

We are changed by cancer. We can never ‘get over’ it. We can learn to live alongside it in some sort of harmony, with the see-saw constantly moving, but gently tilting back towards equilibrium as we practice self-care.

If you are a woman living in the UK with a breast cancer diagnosis who would like to join our private group, please message the centre 
https://www.facebook.com/resilienceinbreastcancer/

Volunteers Week 1-7 June 2018 ~ BRiC Members

It's #VolunteersWeek, and we've been sharing the many and varied ways our members volunteer their time and efforts to help others.

First up are Sarah-Jane, Suzannah and Jocelyn who run a breast reconstruction group to support women who are thinking of reconstruction following cancer diagnosis. The group, Keeping Abreast Hertfordshire and Bedfordshire, meets at Lister Hospital Stevenage every 6 weeks.

It really helps women who are considering their options and they can see results for others who have gone through a similar thing.

Find out more here: https://www.facebook.com/KeepingAbreastBedford/

#VolunteersWeek #BRiCMembers

"...it's enriched my life no end..."

This week, we are celebrating #VolunteersWeek

Jocelyn

#BRiCMembers

"I volunteer doing home checks for animal rescues with the animal team in London. I have 5 rescue dogs and cats from Romania and I love giving up some time to help home other rescue dogs 🐶 I’ve made so many new friends."

Susan ~ #VolunteersWeek #BRiCMembers

It's #VolunteersWeek and we are thrilled to showcase the many ways our members, all women who have been diagnosed with breast cancer, give something back to their communities.

Today we hear from Beverley about volunteering in her local hospice! Do give her a big cheer!

#VolunteersWeek #BRiCMembers

#VolunteersWeek ~ Sarajane

"I am a volunteer junkie and have been all my life, I get so much from it. I volunteer with the RAF Air Cadets, Cricket Without Boundaries (using cricket to spread HIV & AIDS messages in Uganda) and with the local wildlife trust. I do get tired but it is so worth it 😊"

Well done Sarajane! #BRiCMembers

‘I can't wait and want to give something back.'

This #VolunteersWeek we’re sharing the stories of some our wonderful members, like Lisa, who support others.

#BRiCMembers

#VolunteersWeek ~Jasmin

"I’m a volunteer speaker, reviewer and fund raiser for Breast Cancer Care - I’ve been involved in the Fashion show for 5 years, I’ve modelled bras and trained bra fitters, was at the launch of the FAB1 pink Rolls Royce and interviewed for Vita magazine.

I’m also a member of the London and S. East Volunteer Forum for Macmillan, and I’m a reviewer, a voice and a fund raiser. I was lucky enough to be invited to Buckingham Palace by Macmillan earlier this year where I met HRH Prince Charles.

I volunteer at Race for Life for Cancer Research where I give talks on the stage, Marshall at events or help my friend on her burger van where we make a large donation to CRUK.

Volunteering kept me going through the toughest days and has given me a reason for having that dreadful disease. It makes me happy if I can bring comfort to others by sharing my experience."

#BRiCMembers

"I would not have been able to get through my diagnosis and treatment without the support of my fellow volunteer guiders" ~ Kim

This week is #VolunteersWeek and we are celebrating the invaluable contribution made by our members to volunteering. This time it's Kim's turn to take centre stage!

#BRiCMembers

Find out more about Vounteers Week here: https://volunteersweek.org/about-v…/what-is-volunteers-week/

"I’m a volunteer for CoppaFeel which is a breast cancer awareness charity. We educate people on the signs and symptoms of breast cancer. Our message is that early detection and self checking/awareness is so important 😊"

Kirsty ~ #VolunteersWeek #BRiCMembers

In our last post for #VolunteersWeek, here's our very own Anita talking about volunteering for a local community cafe:

"I volunteer for my local community cafe. We support young people with learning difficulties and disabilities in serving the public which helps their confidence and self-esteem.

I work in the cafe one day a week and I am also an admin for the Facebook page. I have retired and this gives me a feeling of belonging to a 'work' family and the pleasure of seeing the smiles of happy customers and staff is very fulfilling."

#BRiCMembers

Volunteers Week 1-7 June 2018 ~ The BRiC Team

"Always, always, we go on. Slowly. Quietly. Never giving up."

To mark #VolunteersWeek, please give a HUGE cheer to our BRiC admin team, Anita, Caroline, Jan, Jenny, our Deputies, Tamsin and Vicky and to Naz who Heads the BRiC Centre.

Together, we strive to support women with primary and secondary breast cancer - by running our centre and our amazing group, by offering support, kindness and wisdom, by writing blogs, by considering relevant research, by sharing engaging articles, by having guided discussions and by providing a safe, kind environment for our members, fostering our resilience.

#TheBRiCCentre #ResilienceInAction #BRiCResilienceTeam