Crying

 

Tears are the words our hearts need to express

When we cry (and don’t cry), why we cry, what crying does for us.

'Perhaps crying is like a muscle, it needs to be exercised regularly in order that we can regulate it. Tears have a job to do, and serve a purpose.'

    According to Wikipedia, crying is the shedding of tears...in response to an emotional state, pain or a physical irritation in the eye. How often we refer to crying as having something in my eye, to explain it away, make light of it. Crying is as natural as laughing, but it’s seen as inappropriate to cry in many situations, and so we hold our tears in and put on our brave smiling face.

    Our discussion on crying showed that within our group we have some women who cry at the drop of a hat, and others who never cry. Some of us would like to cry a little less easily, others would give anything for a good cry. For all of us, we worry that once we start to cry, we won’t be able to stop. Crying is a natural healthy way to release emotion, and can help us to get rid of emotion that we can’t label or talk about. A good cry can help us to feel lighter, relaxed and relieved.

    Many of us have been brought up to hide our tears, believing it to be a sign of weakness. We save our tears for when we are alone.
Naz told us that there is some evidence that after a good cry we are better able to cope with stress. This indicates that it is good for us to cry when we feel overwhelmed. Many find that bottled up tears will escape at some point, perhaps when we at last have time to relax, away from our busy lives, or when our tears are triggered by something beautiful or poignant.

    Our members, all of whom have a diagnosis of breast cancer, some primary and some secondary, reported many different experiences of crying. Some of us report feeling numb, unable to feel, unable to cry, perhaps because the pain of crying is too much to bear. Crying requires a letting go that feels impossible to face, but if we do, we may find that the very act of crying can bring us closer to our feelings, and by allowing ourselves to feel, we build the resilience we need to help us to move forward through ongoing difficulties.

    Some of us noted that tears of joy and pride are frequent, perhaps because we become more appreciative and grateful after a breast cancer diagnosis. A bout of crying may start from something trivial - a tv advert, a newspaper article, something quite distant that resonates with us - but then our tears turn inwards and we find ourselves crying our hearts out, letting go of complicated emotions that we can’t even put names to.

    Many of us push back tears, finding them intrusive and feeling that we don’t have time to cry. Some of us are afraid to cry, afraid to unleash our emotions. We may find crying depletes us of energy so we hold on to tears for fear of exhaustion. Some of us are ok with crying, but we don’t like it when tears catch us by surprise and we don’t know why we are crying. This can lead to a feeling of helplessness, that we are out of control and our tears are controlling us.

    The shower is a common place for us to shed tears, getting rid of some of our emotion before we start our day. Our tears mix with the water as we cleanse our bodies and our feelings. Many of us find this a helpful way to start our day. Perhaps crying is like a muscle, it needs to be exercised regularly in order that we can regulate it. Tears have a job to do, and serve a purpose. And although many of us worry that once we start crying we won’t be able to stop, we do stop as our bodies have a way of ensuring we continue to breathe.

    For those of us who can’t cry, Naz reassured us that it’s ok, it’s a normal reaction to trauma or grief. Learning to sit with our feelings is very hard, and can be helped by practising deep breathing, just sitting still and breathing in and out. Some of us did report a long period of not crying which ended with a surprising trigger and a good long cry.

    Dry eyes can be a side effect of our medication and for those suffering, crying can actually hurt, which is a cruel contradiction for those seeking the relief that crying can bring.

    We would like it to be ok to cry, for people to be able to sit with us while we cry and not be embarrassed or feel they have to put an arm around us. Counsellors are taught this and can be good at sitting with us while we cry. Lots of us keep our tears for when we are on our own, not wanting our loved ones to see us as weak.

    Whether we love a good cry or find ourselves holding back the tears, our crying is part of our healing, part of our emotional release, part of our vulnerability and part of building our resilience.

    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.

 

Things I Wish I'd Known

 

BRiC provides insightful nuggets of advice that we wish someone had told us at the time than we had to learn through experience.

“I think knowing makes me better able to cope. Not knowing leads to nasty surprises, a lot of fear and sometimes thinking that you're going mad.”

The shock

“I think initially it took me a while to accept or understand that you go into shock upon diagnosis as soon as I realised I could start to get my head round it.”

That everything in your life is about to change

“I wish someone had told me how this would change me and my life forever. That I will forever fear a recurrence and that nobody outside of this community will understand that. I wish I had known that support was vital, that I needed to take care of myself. I'm glad to be here, and I'm grateful. But life has never been the same.”

“Life for me also is not the same....I have had to tell them that I will not be allowed to return to my post due to the physical limitations. It’s really tough.”

“I wish someone had been forthright about having to make permanent adaptations post treatment and how quality of life will be, not may be, affected going forward.”

That the fear of recurrence – it never goes away

“I wish I knew how everyone else around me would move on when treatment was over and get back to ‘normal’ while I still feel mired in fear and fatigue. I wish I’d known how hard it would be to explain to those who haven’t had cancer that the fear never goes, that you can’t just ‘get over it’. That every ache, pain, scan, test is terrifying and that being told ‘don’t worry about it’ is frustrating and diminishes how real the fear is.”

"that once you have secondaries this fear does not go away. Scans are more frequent and any hint of progression throws life back up in the air as you run through another line of treatment. Ongoing scanxiety is all too real"

That I will have a meltdown after active treatment

“At the end of active treatment i had a complete emotional meltdown and seriously considered suicide. I felt i couldn't tell the medical team who had worked so hard to get me to that time. When i did break down during Herceptin treatment i was told these feelings are common at the end of active treatment and especially after sepsis (which i'd been hospitalised with weeks before). I was furious that i wasn't warned to look out for this, i spent weeks in emotional agony terrified to ask for help.”

“my breast surgeon told me at my first appointment when diagnosed don't worry I'm confident we can cure you. Well yes you cut the cancer out but now the fun really starts and I wasn't prepared for that”

“I wish someone had told me that after treatment finished I wouldn’t be able to forget about it as if it had never happened.”
That end of active treatment was the beginning of my journey

“I wish someone had told me the truth when I walked away from my final radiotherapy: the truth that this was the beginning of the journey rather than the end. I would also like to have known how dismissive some friends and family would be about any continuing worries. Almost all greeted me with 'well that's done, how lucky it was caught early, all better now.' I would like to have been informed about secondary breast cancer, and I wish someone had told me how lonely the fear would feel”

“I remember my family took me out to dinner to celebrate. I couldn't eat and spent the evening fighting back tears. Then I stayed in bed for several days, exhausted to the core.”

What Chemobrain is

“I wish I knew about chemobrain and forgetfulness, memory loss, difficulty concentrating and paying attention, and how this can affect my self confidence and self-esteem for a long time. I wish I was told that I can be feeling like a zombie and that it will be hard to go back to work.”

“I wish I had been warned about the negative cognitive effects of chemotherapy long after treatment has finished and what to do to improve brain function recovery.”

That I need time to grieve my losses

“I wish someone had told me a breast cancer diagnosis means you have to give yourself time and space to grieve your losses. You lose breasts, hair, feeling healthy and carefree, your femininity, the woman you used to be beforehand, your sanity and all in one fell swoop. Nothing will ever be the same again so, be kind to yourself."

“I wish someone had told me that the psychological impact on my hair would be bigger than the impact of the mastectomy. As you say knowledge is power (or as Foucault would say power (those who set the agenda) is knowledge”

“I wish I had known that I would grieve losses that I had no idea of.”

“I wish someone had told me that my hair loss after the first chemo was so dramatic I wish someone had told me the angst will go and I will be fine”

That hormone therapy can affect your sexuality

“I wish someone had told me about the lack of sex and intimacy lack of libido.”

“I wish someone had told me that I would fear sex and that it would be painful because of lack of estrogen due to Tamoxifen.”

“I wish somebody had told me about how Letrozole on top of ovarian radiation would cause vaginal atrophy making sex painful and ….. eradication of a healthy libido. It’s keeping me alive and of course I’m grateful for that but it’s the fact the impact of the drug on my body has never been discussed. I wish somebody had told me that worrying is an utter waste of time because life is short”

“Then no mention of the impact of the hormone therapy. I do wish the doctors had been honest, realistic.”

That treatment after-effects are harsh

“I wish someone had told me about the after- effects of treatment also. The pain from bones and joints, damaged intestines severe neuropathy, developed arthritis in my hands from anastrozole, and the psychological effects. I was always a happy person, now I have become a bit more serious, developed depression, thinking about the future and reoccurrence, was told I have only an 18% chance of being alive in ten years. I sometimes wonder was it all worth it. But life goes on and we have to change and face new challenges “

“I wish that I was told about how Tamoxifen and AIs would affect you cognitively, reduce your libido and make intimacy painful and difficult. “

“I wish I'd been told that radiotherapy doesn't just make the breast firm, it can also cause distortion and feel painful to touch.”

“I wish someone had told me about post mastectomy pain and nerve pain straight after surgery. It was a shock and frightening the different pains and sensations I had. Now I’m left with pain that no one seems to think is bad enough to worry about because I manage without painkillers. It has a huge effect on me emotionally though.”

That I could suffer chronic fatigue

“that I would have to alter my working patterns in order to manage the chronic fatigue."

“I wish I had known how much the fatigue would challenge me in the long term. I am still suffering with it 9 years later and when I get tired I get weepy and irrational which I hate.”

“Fatigue meant l eventually had to give up my teaching job.....just didn’t have the same stamina either.”

What secondary breast cancer is

“I wish someone had told me the stats on primary BC developing in to secondary BC, and what signs to look out for. I thought when I had “beaten” it, that that would be it....then less than a year later.....BAM.

“I wish that secondaries were more talked about and less of a taboo conversation...”

That I would experience menopause

“I wish I knew that I would experience menopause and what to expect .... this has been so hard for me.

That the positivity cloak can be too heavy to wear

“I wish someone had told me about how much pressure there would be to be 'positive' (not just realistic and rational) and that there are so many possible reasons that 'it was my fault' (which it ain't).”

“I hate the implied pressure of “you must be positive, or else”! Or worse still the implied finger of blame “you brought this upon yourself by your lifestyle choices”! Yes I enjoyed cake/chocolates/a glass of wine/carried a little extra weight just like thousands of other women who DO NOT get diagnosed with cancer!”

“if I had a pound for every time I’d been told how positive I am, I’d be spending the rest of my life on the Riviera. The references to positivity are often used by well meaning people when they don’t know what else to say: ‘be postive’, ‘stay positive’, I don’t think the cancer really listens “

“the first moment i realised it was bad news was when the nurse in the ultrasound suite said something like "a positive attitude is so important" i wasn't feeling positive then and it made me feel like a failure.”

"So much better if told that need time to mourn - will pick self up again ... but also positivity and battling, etc. ultimately doesn't decide the outcome!”

That my medical team could have pre-warned me about side effects

“I wish the hospital were more honest about the permanent side effects and not just tell you about the side effects during active treatment.

“I wish the medical team were more upfront about recovery time, likelihood of complications post treatment eg Lymphoedema and cellulitis to name but two.”

“I specifically asked the medical team to tell me everything about the treatment and what could happen but all I got were booklets that suggested that the majority of patients would be back to “normal” circa 12/18 months post treatment what a load of wishful thinking that was.”

“I don't think I really wanted to know about what was coming in terms of treatment and after effects.....I would have spent too much time worrying about the possible impending problems.......saying that, I have been very lucky in that if I had a problem, I had a good unit/team at the hospital and online, so I could ring/ask questions and get answers almost immediately. That was a life saver. I put my trust in what they were telling me was going to be the most effective treatment”

That I would never feel the same again

“But most of all I really wished someone had pre warned me that I would never ever feel well again (as I had pre treatment) and that it would become my new normal”

“I wish I had known at diagnosis that the impact of treatment was not just the first months/year but so much more long-lasting.”

That cancer is NOT a battle to win or lose

“I hate the fight/battle language. Makes it seems that those who die of cancer are weak or failures in some.”

“I feel like that word has been thrown at me whenever I’ve tried to tell someone how I’m feeling. It makes me feel like I’m failing. When I felt so low last week and posted on this page it was so lovely not to hear it”

“I’ve found friends and family very hard to deal with and pretty much avoid them so I don’t have to try to explain myself.”

That support groups are invaluable

“Mentally you understand the physical side of the op, but the psychological side feels somewhat neglected. They keep saying there's support, but there's a long waiting list to access it”

“After my active treatment I found BRiC and with it the emotional support and understanding I need to keep me going.”

“Couldn’t have got this far without these kinds of support groups.”

“We need more timely info throughout our treatment and beyond - and an easy way of accessing it”

That the ‘new normal’ is hard to identify with

“that ‘normal’ doesn’t happen for many of us - then everyone around us thinks we’re just crap moaners ...”

“I have yet to come across one of those ‘back to normal in 12-18 months’ ladies. Good for her if she is out there but this is not achievable or real for the majority of us”

“I’d love to meet one just to find out why she’s so different to the rest of us mere mortals”

“When I saw him (my surgeon) last month about the continual pain, I was told I’ve got to stop worrying about cancer now and the pain will stop. Felt really told off.”

Things I'd Wish I'd Known (1)

 

“I wish the team had told me that the recovery process would be ongoing”

At the end of active treatment for Primary Breast Cancer, we are all told to go and pick up our lives where we left off, but we are not given any clue how to go about it. In our BRiC Sunday Discussion we asked what people would like to have known or discussed with their team afterwards, if they’d been given the opportunity. The list is quite extensive;

• Detailed discussion about reconstruction options

• Psychological impact of a quick diagnosis, followed by complications

• What now, how to move on?

• How to cope with anxiety, depression and cognitive decline

• Why are MRIs not standard monitoring?

• How to process what has happened to you

• How your sex life might drastically change, becoming difficult or impossible

• Secondary cancer – risks and what to look out for

• How to manage fatigue and menopausal symptoms

• That the recovery process is ongoing

• The blue dye injected for my lumpectomy took over two years to fade

• More information about sentinel lymph node biopsies

• That I would probably never feel the same again

• Detailed information about surgery

• Support and awareness around neuropathy symptoms

• Information about a more holistic approach to being healthy

• One key person for support, rather than Consultant, BCN, Oncologist, etc.

• Physiological problems that can occur years down the line

• Information about PIP (Personal Independence Payment) which supports those of us left with disabilities

• Numerous ongoing side effects of all treatment

• How bad nerve pain could be from Axillary Node Clearance

• The possibility of more surgery and extended treatment

• Failure post-surgery to keep in touch with next of kin

    As you can see the queries and issues are varied and personal, ranging from questions about the treatment we’ve just received, to how to move forward and recover, and a wish to air complaints when things have gone wrong. Most of them are not the kind of questions you would want to bother a busy Breast Care Nurse with, but still, those unanswered thoughts play on our minds and prevent us from having a better recovery.

    The other issue that can affect us is that too much information at once can be a problem for people who are already struggling at the end of treatment. When you are only just coping with day-to-day tasks, your mind just isn’t ready to absorb lots of new information. Trauma can also make it difficult to speak up for yourself, especially when things go wrong with your treatment plan. Feeling completely abandoned with nowhere to turn can lead to depression, anxiety and suicidal thoughts.

    What is clear from this discussion is the complete lack of a support pathway. I floundered around for about six months post treatment. I sourced my own counselling through a local cancer charity and when that didn’t help as much as I thought it might, I drifted into awful, disruptive anxiety followed by deep depression.

    "I only found BRiC by chance, through a friend of a friend, and it has been my go-to support for nearly two years. Wake up at 3am with a question? No problem, the ladies on here would have me feeling buoyed and listened to by 7am! Had a bad day? Wednesday Wobble gave me a safe outlet where I wouldn’t offend anybody! The concept of this group, although based on rather complicated science, is amazingly simple. Mostly, we need somebody to listen, empathise and maybe have some practical input from personal experience. It makes such a huge difference when we feel scared and alone."

    So, what can be done to give everyone the opportunity to access this kind of support, without having to battle for it when they are at their lowest point? What is the point in the NHS spending thousands of pounds on treatment to save our lives, only to have us crumble into a traumatised heap afterwards? It seems their expectations of our recovery are at best optimistic and at worst negligent. And the ones that do care have no access to funding for us, even if they do want to help. A much different approach is needed to guide us and our families as we embark on the journey into our new, vastly altered lives.

The Experience of Joy

 

‘Joy: You don’t have to hunt for joy, manufacture it, or figure out how to lead a stress-free ‘perfect’ life. You can ALLOW joy to live alongside whatever else you’re experiencing. You can WELCOME it into the messiness of your life in every season.’

    This thought-provoking quote brought forward many different perspectives from our members. This idea suggests that we can be happy and sad at the same time, that we can experience negative emotions but still be content at our core.

    The idea that we can choose our emotions is an interesting one. Even in the midst of great pain or sadness, can we turn towards joy and select it, from outside us via joyful moments, events, or experiences, or from a contented secure peace of mind within? Can we reduce our pain by choosing joy over sadness? (much simplified in these words, of course, but in essence this is about active resilience, exercising the brain’s power to choose rather than be subject to random emotion.) If the brain cannot process opposite emotions simultaneously, then in a seesaw motion perhaps we can have some ability to monitor our feelings and to allow (accept, welcome) the emotions that are most beneficial to our resilience?

    Allowing joy into our lives is a practice, something that we can actively introduce even in our darkest moments. We can tip the seesaw towards finding joy regularly, whether we are feeling happy or sad, through resilience. Perhaps it is possible to ‘enable joy to arise and sadness to move to the background’.

    Many of our members pointed to finding joy in small everyday things, ‘breathing fresh air, a beautiful flower, a hug from a loved one or a smile’. Our minds are constantly full of thoughts, stemming from our emotional response according to what is going on around us or what is going on in our heads. Mindfulness helps us to become aware of this constant chatter and to be selective about what we allow in, and as a consequence, what we allow to affect our mood.

    Finding joy, for many of us, is about being focussed and absorbed in something that helps us temporarily escape our world, the trauma of our breast cancer diagnosis and the accompanying fear being all consuming at times. Physical activities and creative pursuits come top of the list as joyful experiences.

    A cancer diagnosis is traumatic and can be devastating, but without exception our members prove that it does not destroy us. On the contrary, it can lead to insight and growth. One emotion that we often talk about in our group is gratitude. This is something that can come naturally to us as we face our mortality, but it can also be nurtured and practised, and it can lead to an increase in joy and contentment. Some of us have experienced moments of deep joy even when in the midst of intense grief, following a bereavement for example. In the loss of a loved one, even when we are mourning we can still find joy and laughter in our memories of the life of that person, and we are reminded that the love we felt for them, and that they gave us, are part of what sustains us when we feel we can’t go on. Laughter is a natural stress reliever and can be a good antidote to depression.

    For some of us, choosing joy is easier said than done. We prefer to think of it as being open to finding light when it’s dark. Positive thinking in itself does not necessarily lead to healing (toxic positivity is a term we are all familiar with - being told to think positive and everything will be ok is NOT helpful) but we can help ourselves by actively looking for the good things around us and by believing that however bad things seem, there is always something good to be found every day if we look hard enough. Making a conscious effort to seek out joy rather than allowing ourselves to wallow in our misfortune is helpful for many of us. It takes work to be aware and mindful rather than letting everything wash over us on autopilot.

    One of our members pointed out that it was much easier to find joy as a child, before cares and worries became dominant in our adult minds. Perhaps becoming more childlike is a useful goal if we want to be more joyful? As one member put it: ‘Joy is a practice and a behaviour. It’s deliberate and intentional. Joy is an inner feeling. Joy endures hardship and trials and connects with meaning and purpose.’ It helps to recognise that all our emotions are fluid, we don’t just feel one emotion all day long, everything comes and goes.

    We can seek out the things that we know will cheer us up when we are sad, whether this is a hug from a loved one, a snuggle with a pet, a walk to our favourite tree - it will be different for each of us, but when we know what will make us feel better we can make sure to do lots of it. When we are physically and mentally depleted by breast cancer and other life events, we can find ourselves profoundly thankful for the simplest things such as the energy to take a walk in the woods or the appetite to eat and enjoy a favourite meal. This gratitude can lead us from pain to joy, or to joy amidst our pain. ‘Joy is in the heart and of the soul and it transcends.’

No Health Without Mental Health

 

What are the things that have helped build our mental flexibility and psychological well-being post diagnosis, and how have they benefited us?

    Seeking help to support our psychological well-being involved many pathways: from mindfulness meditation, exercise, yoga, CBT, acupuncture, reflexology, hypnotherapy as well as anti-depressants…. Naz told us that there is a whole diverse literature emerging, though sparse evidence has substantiated the effectiveness of complementary therapies.


    Importantly, the mechanisms by which they work are unknown, partly explaining why we haven’t been able to develop more targeted interventions. We do know that exercise releases feel-good hormones and the link between mind and body isn’t under dispute.


    The majority of those who took part in our discussion had sought support for their mental health and general well-being in some shape or form, and many have taken up new challenges and hobbies. Strong themes of taking control of health and fitness, peace of mind and well-being emerged, although with modification as many of us find ourselves unable to pick up where we left off at diagnosis in terms of demanding jobs and stressful lifestyles.

    
    Fatigue is an issue for so many, and limits energy and often the enthusiasm for high maintenance mental and physical regimes. As the trauma of a breast cancer diagnosis leads to a reassessment of priorities, so a measure of balance is often preferred to being over-busy. Learning to relax, rest, and perhaps meditate, is a huge challenge in our driven high-achieving superwoman society. The strongest message coming from the discussion is the desire to find what works, and to draw mental strength from it.

    
    A common story from our women is that while in active treatment they were coping well, moving from appointment to appointment, dealing with harsh side effects and adjusting to the fact of their diagnosis. Some worked through treatment as a distraction, others took time off, and for most it was just a case of getting through it. Once active treatment has finished and there is time for reflection, many women find themselves unhinged and vulnerable, unsure of themselves and their capabilities. Physical changes, mental fog, an uncertain future – all contribute to a particular type of post-traumatic stress.


    Our wonderful women have found, or are finding their way through all of this, and their strategies are as diverse and unique as they are. They run and write poetry, they meditate and try hypnotherapy, they learn mindfulness and create with glass. They take up dancing, learn to swim, have a go at art therapy, try yoga, Nordic walking or join a choir. They make jewellery, care for their children, or grandchildren, they walk in nature, read a book, write a book. Many of us described experiencing anxiety, low mood and some of us depression, and while medication has its place, it is interesting to note how many women were determined to deal with it by other means than medication.

    
    Counselling is a popular choice, though some of us had found it hard to access appropriate services. It was valued most when available via Macmillan or support centres and many found it helpful to have an objective space in which to process their feelings and come to terms with their experiences. It’s common not to want to share everything with friends and family for fear of upsetting them, and of course groups such as ours come into their own here too. Our discussion included women with primary and secondary diagnoses, and an important factor for our members with secondary breast cancer is to find activities which allow them to live their lives without being constantly reminded about cancer. We all relish ordinary stuff like hanging out with friends and family as well as seeking support from specialist organisations.

    
    What shines through our discussion is our determination and grit, our desire to find a new normal after diagnosis and to live each day as well as we can.

Practical Information

 

"To allow ourselves to be ‘weak’, to cry, to vent, to confide, is actually an important cognitive and emotional step towards recovery."

    Our discussion focused on the different ways we cope following our diagnosis with primary and secondary breast cancer, as well as recurrence, and how we get practical information and emotional support.

    They say that knowledge is power.

    This, we found, can be context dependent, although many of us had now reached a point where mostly, we preferred to know, so as to prepare and protect ourselves, irrespective of the amount of control we have over the outcome.

    Not knowing can be helpful too though. Some of us, especially at the point of our diagnosis with primary breast cancer, described feeling shocked and numb, and having chosen (or not felt able to make 'a choice') to rely totally on the knowledge and wisdom of our treating teams. It's only as these intense feelings subside, that we begin to open our eyes fully and see this new country we find ourselves in.
    

    Women with secondary breast cancer described the empowerment that came from being able to reach out using social media to get instant information from other women, based on personal experience of treatment possibilities when they had been diagnosed with progression. This was especially important given the complexity of treatment options and how finely balanced decisions can be, which meant that they themselves can have an important contribution to decision-making. Likewise, finding out about side-effects that aren't always mentioned by clinicians. Those of us who had experience of recurrence also found that in the midst of the fear and isolation we feel, peer support, the knowledge that we are not alone and that others have also walked this path offers hope in the darkness.
    

    Naz explained, from a neurocognitive perspective, how emotional and social support and networks are so important - talking and writing, unconditionally and freely, helps us immensely because it frees up and boosts working memory capacity. Naz told us that working memory helps us regulate and manipulate information which then gets stored by our brains. It is what she calls the supervisory system in the brain: it helps us practice what needs attending to, and what needs ignoring. When we exercise working memory through writing, or talking, or simply listening to other people’s similar problems, we free up capacity in our brians that would otherwise be filled up with worry, anxiety, apprehension and fear.

    We become more emotionally stable and feel a bit relieved (like when we cry for example). Different stages of trauma require different practices of resilience. To allow ourselves to be ‘weak’, to cry, to vent, to confide, is actually an important cognitive and emotional step towards recovery.

    Doing the little things that can strengthen our physical well-being are important - going to a group, writing, talking, walking, mindfulness - all help us to cope with the emotional and psychological demands of the situation we find ourselves in. Though the impact of the knowledge is complex, it can be scary at times. Not knowing can also be helpful at times, but it’s a delicate balance, and requires us to be able to be flexible and adapt.

What does Healing Mean to Us?

 

We talked about healing and what that might mean within the context of living with breast cancer. The diagnosis and treatment of breast cancer leaves us scarred both physically and emotionally.

    Naz explained that, for some of us, the physical damage from breast cancer and its treatments is long lasting, especially for those of us with secondary breast cancer who are living with this incurable form of the disease. She felt that in this context, physical healing might not be apt and so we concentrated on what healing might be in terms of the emotional aftermath of a diagnosis of cancer and how it affects our soul, spirit and motivation. This led to a powerful discussion of what healing might mean for us.

    The trauma of a diagnosis of breast cancer was likened to post traumatic stress disorder (PTSD) by a member with close family experience of the condition after military service. So, how best to move forward in the light of such psychological damage? Many of our members believe that one powerful route to healing is acceptance of how we have been changed after diagnosis, both physically and emotionally. There is a strong sense that accepting our “new normal” is not the same as resignation or “giving in”, rather it gives a sense of peace. Being at peace with ourselves gives members a feeling of “being able to breathe” and for others, allows time to grieve for the changes to our previous selves.


    Making peace is not just for ourselves. Common anxieties are the harm and the sadness our illness causes to our loved ones, especially for those of us with secondary cancer. Being at peace with ourselves means letting go of the guilt that our illness causes pain to others and, for some, allows those difficult conversations about the reality of death. Making peace acknowledges that we can feel sad and that our family members can feel able to feel sad too - and that it’s OK to feel that way.

    It is not always easy to reach acceptance. Feelings of anger and fighting against our reality is common and is exhausting. Some feel that we are not helped by the language of breast cancer - described as “toxic positivity” by one member. Terms likened to fighting a battle and winning a war causes emotional distress, especially for those of us with secondary disease where the battle will never be won. For others, physical symptoms such as pain or fatigue cause a direct affect on emotional wellbeing. Many of us have multiples worries, not just cancer and it can be hard to separate those apart. Suffering multiple traumatic events in quick succession taxes resilience and is especially hard.

    There is a strong feeling that healing does not happen in a linear progression but come in fits and starts and in many directions. It can be unravelled when we are taxed by new challenges. The phrase “Two steps forward, one step back “ was used by many. One of our members has a helpful reminder to tell herself of impermanence - that such feelings are not permanent.

    An important step to healing and acceptance is to “self care” - making space for grieving, being kind to ourselves, saying “no” to others if needed and using grounding when it all feels too much. A member describes how she looks up at the sky and takes a deep breath. Some of us have found counselling and psychotherapy helpful. Self compassion is important. One member describes how her family upbringing has resulted in her feeling she must always put others first and that impaired her ability to heal herself.

    It is felt that making peace with ourselves allowed a deeper connection with those friends and family members who are able to simply be with us. It can be a relief to stop trying to protect others and trying to do this alone.

    We were introduced to the Japanese art of Kintsugi, the art of mending broken ceramics by adding gold into the glue repairing the breaks. The analogy that broken parts can be made beautiful hit a chord with our members. We liked the idea of not hiding our scars but embracing them. One member told us that this meant she will be “enjoying my beautiful wonky life”.

    Making peace with ourselves. Healing. Sometimes the process can be helped with the support of others who understand.