Unraveling the emotions behind grief and why do we grieve the loss of people we've never met: BRiC's Collective Voice

In a recent Sunday discussion we talked about grief, particularly about how we grieve for the loss of people we have never met, celebrities and public figures who we don’t know, but whose deaths cause many of us to feel profound grief.

Grief is a complex emotion and affects us all differently, but it is something which we all experience in some way. People often talk of grieving as a process, but it is not a linear path, there are twists, turns, surprises and bumps in the road. As a group of women who have all had a breast cancer diagnosis, we were aware that deaths caused by cancer often touched us the most, perhaps reminding us of our own mortality or causing us to think “that could be me”. One of our members said that once we have had a cancer diagnosis our ability to live a carefree life has been taken away forever; thoughts of death may become an everyday part of our lives. We all know that none of us will live forever, but cancer steals away our peace of mind and may leave us in a constant state of worry for whatever life we have left.

Some of us have been raised to keep their emotions in check, finding expressions of grief unnatural and making the process of grieving more difficult. Cancer deaths often touch us very personally, even if it is the death of a total stranger, it can be hard to explain to others how the death of someone we don’t know affects us so deeply and stops us in our tracks. There were others who felt unaffected by the death of strangers or celebrities; members talked of needing their energy and focus to be on themselves and their loved ones; having a cancer diagnosis is exhausting and sometimes there is just not enough strength in us to think about people we don’t know.

For some the public outpouring of grief often seen when a celebrity dies, is uncomfortable and sits uneasily with them. Occasionally it is the similarity between the deceased and ourselves which causes grief – “he was the same age as me”, “her children are the same age as mine”, “they were married as long as my mum and dad”, “her diagnosis was the same as mine” – all these things can hit home and remind us of our own tenuous grasp on life.

We questioned whether what we feel when a stranger dies is actually grief, or is it empathy; fear; compassion; sadness; anger? Perhaps all of these emotions are part of grief, but we wondered if it is really the same as losing a loved one. Anger was an emotion many of us shared, particularly when we hear the words “died of cancer”, we are acutely aware that cancer is indiscriminate and such a cruel disease. It was interesting that the age of the deceased was pivotal for some members, feeling less sadness for those dying at an old age, but grieving deeply for those who die young; however this wasn’t the case for everyone, some members felt all deaths were equally distressing no matter the age of the person who dies.

Sadness for those left behind was an overarching theme, we acknowledged that part of grief is facing the future without someone. The sight of someone left alone after a lifetime with a partner can be heart-breaking to see. Sometimes when hearing of a death it reminds us of those we have lost and old memories can resurface, not all of them good. The death of parents was something many of us could relate to, for most bringing mixed emotions, sadness and loss, but happy memories and feelings of warmth; sadly, for others childhood memories were not so good and reminders of deceased parents brought painful memories. One of our members paraphrased Jamie Anderson saying: “Grief is just love with nowhere to go” and we all felt that grief for those we love and care about is usually much more powerful than for the celebrities and public figures. However, there were several mentions of times when the death of a celebrity has affected us deeply, sometimes taking us by surprise, leaving us distraught and feeling completely lost.

Grief is not one emotion, it is not simple and it is not the same for everyone, but one emotion which underlies grief is empathy, empathy for the person who has died, for their loved ones, for others around them. Empathy is a powerful emotion and enables us to make connections, even with people we don’t know personally. Grief and death are frequently taboo subjects but having a cancer diagnosis means we have all had to face the possibility of our own death, even more so for those of us with a secondary diagnosis; knowing we can express our fears in our private group enables us to share that burden. We can say “I’m sad about her dying because it could be me” without fear of being judged. It is important to understand that grief is a natural process, not linear and not time-constrained. People grieve in different ways and for different reasons, but each is valid.

"What we resist, persists"; BRiC on how we embrace our mixed emotions after loss

 

A recent Sunday topic for discussion focused on acknowledging the many mixed emotions we are feeling right now; for the losses we’ve experienced, coming to terms with how we feel, and being mindful of the pain we may be going through. This topic was very sensitively suggested by Naz after a hugely emotionally challenging week in which we all felt shocked and sad at the death of our wonderful administrator and friend, Bex Lewis.

Commonly expressed was the vulnerability that we all feel following Bex's death and how the impact of that is far-reaching. It triggers so much sadness and grief within us, as we mourn for the many precious lives that have been cut short. It’s only a matter of weeks since Fiona, another hugely valued and much-loved member of our administrative team died. We experience feelings of fear, disbelief, and sometimes despair as we reflect on what the future holds for each of us. None of us are immune to the possibility of secondary spread of breast cancer and for those of us currently living with the advanced version of this disease, the anxiety, and uncertainty about what lies around the corner is amplified.

We are each forced to face our own mortality every time we receive the devastating news that a member of our group has died but it’s reassuring to know that we are not alone in feeling emotionally vulnerable and fragile. Naz’s academic expertise and professional knowledge around how our brains respond to trauma helps to guide us. She is able to gently articulate the reminder, that as humans, our brains are hardwired to feel fear. This is part of our protective mechanism as we scour our internal and external landscape for danger as “a threat to our own survival has been flagged yet again.” Along with that comes the supportive message to us all, that “it’s ok not to feel ok.”

Each of us can behave harshly towards ourselves as we tell ourselves that we should be able to cope or better manage our feelings and emotions. Several of our members commented on how exhausted it makes us feel, as we try to muddle through the emotions in our minds. We acknowledged that talking to ourselves in a way that sees us trying to fight or resist our difficult emotions isn’t helpful. Instead, many of us are gradually accepting and understanding that if we embrace how we are feeling, this is much more nurturing and supportive of our wellbeing in the long run.

As individuals, several of us were able to open up and reflect on recent tragic circumstances and losses within our own families, friendship groups, and local communities. We are all one family here in BRIC but of course, we know we’re all part of wider families, friendships, and communities. There are many of us who have been recently trying to cope with feelings of sadness and grief in connection with experiences of loss closer to home.

The word ‘rollercoaster’ was used several times to describe the peaks and troughs of our emotional responses. Some of us are looking to a future that we know won’t include us and that burden weighs heavy as we present our ‘brave face’ to the world. The highs and lows of our emotions often manifest themselves in us becoming angry and frustrated at seemingly small things but our discussion highlighted a more accurate picture; that it’s not really the small things that are triggering us, it’s the layers that we’ve piled over the big things in our lives that see our emotional response bursting to be freed and acknowledged. This is upsetting for us as we reflected, that often, we don’t feel in control of our emotions however our discussion helped to shine a salient spotlight on this: we don’t have to put pressure on ourselves to be in control of our emotions; this is an impossible task. Blocking tears and burying things inside of us only serves to help our emotionally challenged internal landscape to become more overloaded.

There is an expression in mindfulness which is, what we resist, persists. This is a gentle reminder that facing all of our emotions head-on with kindliness and self-compassion is much more helpful in bolstering the vulnerability of our human experience as we encounter both pleasant and unpleasant feelings, thoughts and emotions. To accept only the pleasant aspects of our experience is to acknowledge only one-half of each of us.

The opportunity to talk, connect, and be part of our collective voice is life-enhancing and life-affirming. Hearing the message that all of our feelings are valid, that it’s ok not to be ok and that BRIC is a safe place where we can receive and accept support is very much felt and hugely appreciated.

“If we are physically hurt, loving our wounds, and nurturing them with TLC, makes them heal faster, ignoring them doesn’t.”

The life lessons, insights, and sharing that our Sunday night discussion provides help us to embrace all aspects of ourselves. We are held together by our experience of breast cancer and we are all heard. Sharing and communicating with one another helps us to feel supported, uplifted, and less afraid. We are helping one another to face all of our emotions.

Weekly Discussion Summary ~ Crying

Tears are the words our hearts need to express.

Our discussion last week centred on crying: when we cry (and don’t cry), why we cry, what crying does for us.

For our members, women with primary or secondary breast cancer, this was a topic which led us to bring our attention to whether we cry a lot, occasionally or whether we have lost the ability to cry.

Numbness, we learned, or cutting off from painful emotions after trauma is a common response and many shared we had been unable to cry on diagnosis and during treatment. Others find tears come easily and we may then worry that we are embarrassing others when we cry in their presence.

The power of crying to heal is undisputed, however, it can feel counter-intuitive to cry when we are struggling and we acknowledged that there are times when it isn’t appropriate to cry – in social situations perhaps, or at work. Some of us prefer not to cry in front of our loved ones, while others feel it’s good to clear the air with a good cry and perhaps a comforting hug.

Many of us might have a really good cry, perhaps even months or even years after key events or experiences. If this happens, we may feel that at last we have unshed tears from deep in our past flowing freely and it can be hugely therapeutic.

Many of us shared that we desperately want to cry but we can’t. The need to cry is there but the tears just don’t come. We wondered if it’s possible to cry without tears? Maybe we feel pressure in the chest, a build up of emotion with nowhere to go. This can be very uncomfortable.

As children, some of us were told that it’s weak to cry. This can lead to unnecessary suffering because the need to cry is subconsciously suppressed due to our deeply ingrained beliefs.

If and when tears eventually come, it may be when we least expect them and at an inconvenient time. Some of us reported deliberately suppressing emotions, remaining detached from our feelings as a self-preservation coping mechanism. We fear that if we allow ourselves to cry, we may never stop.

Tears can convey different emotions – there are angry tears, sad ones, gentle ones, heart wrenching ones. Tears of grief, of sadness, of self-pity, of wretchedness. We cry for others, we cry for ourselves. We cry when we are happy too, tears of pride, of love, of joy. Any strong overwhelming emotion can lead to tears. Tears can be triggered by a piece of moving music or a poignant moment in a TV show, which may turn into a good, long cry. At other times we may feel the tears prickling behind our eyes but we hold them back, wipe them away, refuse to let them come.

We feel relief and calmness following a good cry, and it’s interesting how many of us cry in the shower to start the day – cleansing our body and mind at the same time.

The loss of a loved one may trigger unreleased tears, or perhaps an emotionally charged moment such as a Reiki session or a beautiful sunset.

Naz told us that if we can give ourselves permission to cry, there are many self-soothing benefits. We may feel relaxed, cleansed and relieved. Crying has a positive effect on our nervous system, releasing feel-good hormones that help us feel balanced. There’s a lot to be said for having a good cry, picking ourselves up afterwards and getting on with it, feeling more motivated and determined.

Tears can sometimes be a signal of having overdone things, a sign of fatigue, giving rise to a need to step back or rest. If we notice and listen, we can take better care of ourselves.

Crying isn't a sign of weakness and we should never be ashamed of our tears. If we allow ourselves to go with the flow of our bodies and minds, letting the tears come when they appear, then we can become more at one with the ebb and flow of our emotions. Taking the time to stop, breathe, feel, and cry if we want to, is a healthy way to be in tune with ourselves.

If you are a woman living in the UK and you have a diagnosis of breast cancer, you would be welcome to join our private group. Please message us via our facebook page https://www.facebook.com/resilienceinbreastcancer/ 

Weekly Discussion Summary ~ Grief and Resilience

Have you experienced grief following breast cancer?

In our weekly discussion we explored the relationship between grief and resilience. 

Grief, because it involves sadness, crying, hopelessness and even depression, can be seen as a ‘negative’ emotion. We seldom encounter a conversation that encourages us to grieve over a significant loss and instead we are encouraged to move forwards.

Our discussion revealed the many ways women with primary and secondary breast cancer experience loss - the loss of a once care-free life; of normality, of womanhood and sexuality, others described losses associated with the side-effects of treatment, others spoke about the loss of a career and those of us living with secondary breast cancer described grieving for others, or the loss of hope for a future with loved ones.

Many of us described putting on a ‘brave face’ or being ‘positive.’ Some of us were surprised to find that we had not thought about grief in relation to our experience of breast cancer. Those of us who had experienced the loss of a loved one found ourselves comparing our bereavement with our experience of breast cancer and we heard that experiencing a bereavement while dealing with the emotional impact of breast cancer shaped and coloured women’s experience of grief in profound ways. 

The numbness and detachment we commonly experience are our body's defence mechanisms which help protect us and cope with the agonising pain. For some of us, the overwhelming instinct to avoid any painful feelings continues - some of us shared that we did not know how to grieve, either because we were afraid of the depth of our feelings, or because we wanted to protect our loved ones.

Naz told us that recent research has shown that grieving after trauma and significant loss allows us to heal. Recent studies looking at the longitudinal effect of trauma on physical and mental health have concluded that those who managed to grieve for significant periods of time were in better health physically and emotionally in the long run. A process of grieving helps us to come to terms with our losses. To do this, we rely on our cognitive functions which help us to regulate our emotions and as we know only too well, run high in the face of the uncertainty and trauma that accompanies the rollercoaster of breast cancer.

Minimising the traumatising effects of breast cancer and the pressure to be so-called positive - for those of who have finished active treatment, this might mean, putting the ‘cancer chapter’ behind us to move forward; for those of us with secondary breast cancer, this might mean we have to completely deny the reality of our situation - can interrupt the grieving process, increasing our emotional vulnerability to distress, anxiety and depression.

Grieving after loss does not mean that we put our lives on hold and get stuck – it opens the way for curiosity, exploring an emotionally rich life that acknowledges our sorrows, releases tension moving us towards resilience and flexibility. It helps us adjust. It helps us to heal.

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 contact is by facebook message https://www.facebook.com/resilienceinbreastcancer/

#ResilienceDiscussion

Many thanks to Vicky for allowing us to use this beautiful image.

Weekly Discussion Summary ~ Loss of a Friend or Loved One to Cancer

In this week's discussion we shared our feelings about the loss of a friend or loved one from cancer.

We all described feelings of intense sadness and how deeply we are affected by the loss of someone with cancer. For some of us there is numbness, which can shield us from our most painful emotions. Others described feelings of guilt, or worry for their own family and friends and some of us shared that they had needed to withdraw from groups and forums. We also acknowledged that our immediate reaction is often a combination of sadness, mixed with deep fear for ourselves. We realised that underlying our grief is the obvious - yet unspoken - fact that we are reminded of our own vulnerability, something that we carry with us, yet often suppress to keep going. This uncertainty, adds to our fear, which can then make us extremely apprehensive about the future.

More than loss though, was the importance of our friendships with one another, the way we enrich one another's lives through our shared experiences and our understanding of one another's feelings and fears. We all felt this was a positive we had taken from our experience of cancer. Our discussion concluded that while there is loss, we gain so much more from our friendships with one another and there is love, which outweighs the sadness, and which we carry forward with us.

In relation to our psychological resilience, the question we asked was what is the best course of action?

Naz told us about George Bonanno, a profound Research Professor of Psychology, who has written a book called 'The Other Side of Sadness'. In it, he outlines evidence from longitudinal studies showing that people who allow themselves to grieve and express emotions associated with the trauma have better psychological and physical health in the longer run.

As our discussion highlighted, there is no right or wrong way to experience fear, sadness, and grieving for our loved ones, but if we allow ourselves to get closer to our emotions, our 'hurt', then this evidently has beneficial effects on a number of levels. This is the opposite of denial, and of course needs much flexibility and strength to know how to down regulate our emotions when we feel ready to move forward. Grieving, and acknowledging our fears can only give us the strength to move forward.

For interest, here are two blogs on the bonds of friendship between those living with cancer and its effects. One by our very own Tamsin, the other by Kira Goldenberg:

http://www.huffingtonpost.co.uk/tamsin-sargeant/the-living-infinite-frien_b_11996066.html

https://www.theguardian.com/commentisfree/2016/jun/23/cancer-survivors-bond-grief

#ResilienceDiscussion

One Year On ~ Vicky

Earlier I came across this quote, “We all have an unsuspected reserve of strength inside that emerges when life puts us to the test.”, which today is very apt for me.

It’s hard to believe that it’s days away from the 10th anniversary of my primary breast cancer diagnosis at the age of 31.  A small, low grade cancer with no lymph node or blood vessel involvement and with an excellent prognosis.  My Oncologist suggested dealing with it by surgery alone and agreed for me to go ahead and have the family we had been planning (I’d experienced a miscarriage only 4 months before). He told me in the nicest possible way to go away and to never darken the doorstep of Oncology again! So off I went, welcomed my two children, gave a nod of acknowledgement to the 5 year cancer-free milestone as it passed by, got married, next stop 10 years which seemed to be in my grasp until a new bomb dropped.

One year ago today I climbed aboard a roller coaster and was told that I wasn’t allowed to get off.  I can still see that day clearly, extensive spread of breast cancer into the lymph node and bones, treatable but incurable. My world crumbled around me. I struggled to hear what the doctor was saying, all I heard was screaming in my head.  My first words after what seemed a lifetime: "My children are only 6 and 5, I need to be here for them”.

So here we are 366 days on, a year of ups and downs, but life does move forward. There are times when I forget for a few hours, feel normal even, then other times when I cannot shake off the waves of grief and anxiety surrounding what is facing us. It’s a bittersweet moment, because of course being here is cause for celebration, but there’s sadness too as it’s an anniversary which brings our sense of time into sharp focus. Our mind starts to be drawn to the future as well as the past.  

Over the year I ventured back to support groups, made new friends and met some amazing women sadly in the same boat. After joining the psycho-educational group belonging to The Research Centre for Building Psychological Resilience in Breast Cancer, which brings both primary and secondary women together, I was recruited by Professor Naz Derakshan to assist running the Centre along with Tamsin Sargeant. The work we have done together has seen us create this blog ‘Panning for Gold’, as a platform for women with a breast cancer diagnosis to share their stories and showcase their talents.  My first venture into blogging was here, titled ‘Stage IV and beyond…, and since then I have co-written two blogs with Tamsin for the HuffPost UK.

Secondary breast cancer can be an isolating condition as it is so widely misunderstood. It cannot be cured, so the treatment for it never ends and both this and the cancer cause physical side effects. The psychological impact of living with the condition can be crushing.  Thankfully, the online groups are supportive, caring places, somewhere to go where other women understand, where we can share good and bad news and also where there is a mine of information. Sadly over this year I have seen too many women die from this relentless disease, all at different stages of life, many young women with children and those who were denied that chance.  This has to stop, but we don’t have the answers.

                                                                         

So looking back what advice would I give myself upon diagnosis.  Initially I would say it will seem like a living nightmare but gradually you will find a new normal, so it is important to carry on with those tasks which allow you to connect with normal life.  Give yourself time to adjust as your head will be full of questions (a lot of which can’t be answered) and you will feel every single emotion…probably all at the same time and sometimes at inconvenient times. Acknowledge these different emotions and face your fears, otherwise they will rear up and strike when you’re least expecting it. But most importantly, keep the HOPE.





Blogs:

Stage IV and beyond... 
http://bcresiliencecentre.blogspot.co.uk/2016/02/stage-iv-and-beyond-vicky.html

Panning for Gold: Stories of Resilience after Breast Cancer  
http://www.huffingtonpost.co.uk/tamsin-sargeant/stories-of-resilience-after-breast-cancer_b_9997488.html

We Need to Talk about Secondary Breast Cancer
http://www.huffingtonpost.co.uk/tamsin-sargeant/secondary-breast-cancer_b_10247000.html

Stage IV and beyond... ~ Vicky

June 19^th 2006 is one of those dates I’ll never forget. I was dragged kicking and screaming into the world of cancer when at the tender age of 31 I was diagnosed with a grade 1, stage 1 primary breast cancer.

In a nutshell, I had surgery, was told to go away and have the family we so desired and in the nicest possible way, never to darken the doorstep of Oncology again!  I took on the mission and welcomed my children in 2008 and 2010, and over time and with optimism, cancer was relegated to lower leagues while I threw myself into family life.

Fast forward to early 2015, I developed difficulties with my usually trouble-free back, and at the same time was called for investigations on a suspicious axillary lymph node that had reared its head on a routine check-up. 

And so it came…the first strike…the cancer was back!

Then June 16^th 2015, the big C bomb dropped…it was stage IV/metastatic breast cancer.

There is no stage V.

So there it is…40 years old with a metastatic cancer diagnosis. Let’s leave that hanging for a moment.

~

So, what is stage IV/advanced/metastatic breast cancer?

Millions of cancer cells form a tumour. The original cancer in the breast is known as a primary breast cancer.  People do not die from cancer that remains in the breast area.

Secondary breast cancer occurs when breast cancer cells spread from the primary cancer in the breast to other parts of the body. This may happen through the lymphatic or blood system.

You may hear it referred to as:

• metastatic breast cancer
• metastases
• advanced breast cancer
• secondary tumours
• secondaries
• stage 4 breast cancer.

The most common areas breast cancer spreads to are the bones, lungs, liver and brain. When breast cancer spreads, for example to the bones, it is called secondary breast cancer in the bone. The cancer cells in the bone are breast cancer cells. 

A diagnosis of secondary breast cancer means that the cancer can be treated but cannot be cured. The aim of treatment is to control and slow down the spread of the disease, to relieve symptoms and to give the best possible quality of life, for as long as possible, but this can vary significantly between individuals.

Information about metastatic/advanced breast cancer can be found at www.secondhope.org.uk

~

So here I am now living with an illness that will cut my life short one day when the treatment options run out, but I suppose tomorrow is never a given to any one of us. However MOST people will grow old with their loved ones and live to see their children/nieces/nephews move on through their lives, careers, get married and have their own children.

We should perhaps live in the moment more and less emphasis should be put on milestones, but the uncertainty of living with a life limiting illness is not the same as the general uncertainty of everyday living. Nobody knows what might happen when they leave the house each day, but this is different. You do find yourself looking ahead; wondering if you’ll be one of the lucky ones who make double figures, if you'll see your young children hit milestones, guide them through adolescence and less likely into adulthood.

While wading through a sea of uncertainty, I read a comment on a forum about traumatic events happening in our lives for a reason, to make us stronger or help us grow, but this just doesn't sit right with me. Almost immediately I stumbled upon a blog by Tim Lawrence examining the topic of resilience in the face of adversity. He lives with cerebral palsy and epilepsy and believes no one should face adversity alone. He published a post entitled 'Everything Doesn't Happen For A Reason', which really struck a chord with me.

I have never questioned why me? Because I suppose why not me? But like Tim, I cannot accept that there is an underlying reason for the hand I have been dealt. My diagnosis may give me more focus but will taint my life in other ways. Our children may be encouraged into a purposeful life as a result but it will destroy our family unit, and where's the reason in that?  My family, friends and our incredible children do not deserve this, and neither do I.

There is often expectation that the only option in these circumstances is to always think positive but the post reinforced that I can give myself permission to be sad and grieve for the life I had and for my young family's future...this is normal behaviour in the face of adversity.  So between my own abundance of positivity, strength, resistance and even normality, I am allowed to feel the way I do now and again when the waves of grief and devastation crash over me and sometimes continue their onslaught all day. What I have learned though is that on those days I know I can make it out of the other side and pick myself up, and that as long as I do, our family unit will lso will tarnish my life in others. My children may be encouraged into a purposeful life as a result of this but the other side is that it will destroy our family unit, and where's the reason survive for now. Slowly, quietly, never giving up.

I cannot fix this but I will carry it.




http://www.timjlawrence.com/blog/2015/10/19/everything-doesnt-happen-for-a-reasonnnot accept that this needs to happen to me in order for me and my family to grow.

This article has helped confirm that I do not have to think positive all the time as is often expected and unfortunately this is me now so if people can't handle me having negative, down days I cannot use energy on this. I am allowed to grieve for the life I had, the life I want, which is not to be embroiled in stage 4 cancer, and to grieve for my young family's future. In between my positivity and strength I am allowed to feel the way I do on some days when the waves of grief and devastation crash over me and sometimes continue their onslaught all day. What I have learned though is that on these days I know I can make it out of the other side and pick myself up ready for battle again and as long as I do, our family unit will survive for now. I cannot fix this but I will