Friday 27 May 2016

Can Training Cognition Enhance Psychological Wellbeing? ~ Jessica Swainston ~ *GUEST BLOG*

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I was recently shocked to discover that the world health organisation has estimated that 50 million years of work, an annual global loss of £651bn, will be lost to anxious and depressive disorders between now and 2030. Although I was aware that emotional disorders such as anxiety and depression are on the increase, I found this figure particularly alarming not only for the state of the economy, but more importantly for the future psychological well-being of individuals, their families, and the society we live in. 

As it stands, current pharmacological and psychotherapeutic treatments have been shown to be only modestly effective in both the treatment and prevention of emotional disorder. To me, it seems critical then that more research is carried out in order to better understand the underlying mechanisms involved in these conditions. 

By achieving this, there is hope that we can develop effective interventions to not only treat emotional vulnerability, but further to build resilience against its onset and recurrence.   

So, how do we become more resilient? How do we continue to cope with the ever demanding stresses that society and life place upon us? 

It is these questions that motivated me to embark upon a PhD exploring how we can develop appropriate interventions to build resilience in vulnerable populations. Luckily, Professor Nazanin Derakshan at Birkbeck University of London, Director of the Laboratory for the study of Risk and Resilience in Mental Well-Being, and Director of the Centre for Building Psychological Resilience in Breast Cancer, is of a similar mind-set, and agreed to supervise me throughout this journey. 

For many years Derakshan has investigated the cognitive mechanisms that are involved in emotional disorder.  Derakshan is of the mind that our ability to flexibly direct where we place our attention, is the key mechanism in regulating our emotions and boosting our psychological resilience. In other words, the better we are at paying attention to our current goal (e.g. Writing this blog post), the less distracted we are at the expense of irrelevant intrusions and worrisome and ruminative thoughts that can quickly lead to cognitive and emotional fatigue (e.g. 'What if I fail my PhD?!'). We can refer to this ability as 'attentional control'. 

Backing up this claim, research has shown that people with high anxiety and depression are poor at exercising attentional control, they find it difficult to focus, concentrate, and get easily distracted. Research shows that when there are possible faulty brain connections between 'emotional' and 'cognitive' systems they can lead to problems in regulating attentional control and using it more effectively when we need it.  

If then attentional control is the key mechanism by which emotional vulnerability can be moderated, how then can this process be targeted? 

It was many years ago that I first became aware of online 'cognitive training' games in psychological science, at the time being investigated for its reversal effects on cognitive degeneration through ageing. However, it is only recently that I have discovered a line of research investigating the effects of these games on emotional disorder, led by Derakshan. Can training our attentional control through cognitive training games better our ability to stop intruding and ruminative thoughts from occupying brain space? Further, is the training applicable to other circumstances, such as improving anxious states that can interrupt sports performance? Preliminary findings show great promise.  As yet, compared to control groups, a course of adaptive attentional control training has shown to reduce anxiety, increase cognitive efficiency leading to better performance and improve sports performance under high pressure. 

I am a firm believer in always considering the potential directions and clinical relevance of new interventions for emotional disorder. So, what is the future for cognitive training in psychological health?  I think it is fair to say that a number of current psychological therapies such as mindfulness and cognitive behavioural therapy are of varied success. Yes, for many patients they have wonderful effects, however many others fail to engage at all. This may in part be due to the lack of attentional resources that severely depressed and anxious individuals possess. If one's attention is poor, how can one easily engage in a 10 week course of psychological therapy which requires focus and concentration? It can often be problematic. 

Therefore, cognitive training may be beneficial as a complimentary treatment to current therapies. If attentional control processes are improved through training, individuals will be better enabled to pay attention and gain the most value from their treatment. 

So improving our cognitive flexibility and ability to adaptively pay attention to our current goals may, in effect, help to our build resilience and protect against emotional vulnerability. This research is in its infancy and there is a long journey ahead, but I am excited by our initial findings and am keen to build developing cognitive interventions that may help alleviate and prevent emotional distress.

Jessica Swainston
PhD candidate in the Department of Psychological Sciences, Birkbeck University of London
Laboratory for Risk and Resilience in Psychopathology and Mental Well-Being
Centre for Building Psychological Resilience in Breast Cancer


Thursday 19 May 2016

Panning for Gold ~ Stories of Resilience after Breast Cancer ~ HuffPost Blog

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‘Once upon a time’ - these magical words evoke childhood memories of being safely snuggled up in bed, listening enthralled to stories of faraway lands and fantastical creatures like giants and mermaids. These stories teach us that the world isn’t always safe; that life involves suffering, but that goodness is rewarded - Red-Riding Hood escapes the wolf, Cinderella the drudgery and callousness of her wicked step-mother.
Being diagnosed with cancer is like being catapulted into another world - the Land of Illness - unlike Mordor, the landscapes are bleached and bright, but just as dangerous. It’s a world ruled by men and women wearing white coats, speaking a foreign language, with unfamiliar rules - bad things happen to good people. Unsurprisingly, we are desperate to leave.

During my treatment for breast cancer, “I’m fine” became a stock response to the kindly-meant question, “How are you?” On a particularly bad day I might say, “Not too bad” (not too good). I was mostly frightened, exhausted and in pain. On the inside, I was far from fine, I was frozen and mute:  

I was looking at myself through a glass that could not be broken, I could not touch me, I did not know me, I did not know how to reach me. Everyone knew me as a positive and optimistic person, always smiling and strong, full of opinions and vocal. But in a paradoxical way, the fear, the agony and the pain felt somehow to my strength, I could identify with them. They seemed to lessen when I listened to them and accepted them. They are part of me, but they are surely not me.
            Naz - the Other Side of Fear

Many people return to the Land of Wellness gleaming with gratitude and triumph, but some of us find ourselves in a strange hinterland, where, like a displaced people, we no longer belong. We’ve learned that not all hurts get healed and some symptoms can’t be remedied. We return with scars and suffering from debilitating side-effects which are at best irritating, and at worst life-changing, requiring us to re-evaluate our lives:

I realised that I had to look forward, not back, and build a new life. I wasn't going to be able to return to the old one. I wasn't the same person, physically or mentally. I had already left my stressful job, so I didn't have that to go back to. I was doing a bit of training, meeting friends for lunch, spending a lot of time alone, reflecting, ruminating. Slowly I was emerging from my winter cocoon, but I was a long way from becoming a butterfly.                                                                                                                                                                                                                                    Annie - Annie’s Song

We need our stories about illness to have a happy ending. We want to hear women say that their new breasts are better than their old ones (I’m chuffed for you if they are), after all, it’s like getting a free boob job on the NHS isn’t it? We want to hear about so-and-so who had breast cancer and climbed Kilimanjaro, or dare I say it, won Masterchef? (Sorry. Jane is wonderful it’s just that my heart breaks for women who won’t ever hear that most magical of words - ‘remission’):

There is often the expectation that the only option in these circumstances is to always think positive......but 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. I am allowed to feel the way I do now and again when the waves of devastation crash over me. What I have learned is that on those days I know I can make it out the other side and pick myself up, and that as long as I do, our family unit will survive for now. Slowly, quietly, never giving up. I cannot fix this but I will carry it
                                                                                                 Vicky - Stage IV and Beyond...

Don’t get me wrong, these are important stories, but standing alone, they reduce the experience of women living with breast cancer to a ‘single story,’ perpetuating a myth about illness which can be just as devastating as cancer itself. Panning for Gold was launched on World Cancer Day in February 2016 to provide an inclusive platform representing the many voices of women with a breast cancer diagnosis, a space not only for sharing our stories, but for listening and, by listening, to bear witness, and begin to heal.  

Around 57,000 women are diagnosed with breast cancer in the UK every year. We are all women everywhere. Our blog has featured a model, a runner, a poet, an artist, a photographer, a song, ducks, Buddhists and big pants. Some stories don’t end with the words ‘they all lived happily ever after.’ But we go on. Even when we think we can’t go on, we go on. We go on slowly. We go on quietly. And we never give up.

Tamsin Sargeant and Vicky Wilkes
Research Centre for Building Psychological Resilience in Breast Cancer
Submissions welcomed by email:  

This blog was published on HuffPost UK 'The Blog' 19th May 2016


Friday 13 May 2016

Worms On Parachutes ~ Sarah-Jane

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“Breast cancer has taught me to reach for the stars as everything is possible if you remain positive and believe you can achieve everything you set out to do.”

I will always remember the waiting room on that Friday morning in June 2007. It was the day the words were muttered “it’s not good news afraid, its cancer.” I know many of us will resonate with the numbness that runs through our entire body and the immediate fears that flash through our minds as the consultant delivers this news in the softest manner possible.

Cancer and breast cancer was something I naively felt would never happen to me in my adulthood. After all my childhood had been plagued with ill health. Just as I was about to sit my final school exams, a blood test followed by a biopsy from a lump in my neck revealed the shocking news to myself and my parents. I had stage 2b Hodgkin’s Lymphoma. I had cancer in my neck, under my arms and both sides of my lungs. The only way to ‘cure’ me was to have 6 months of aggressive chemotherapy and 6 weeks of daily mantle field radiotherapy I remember sitting my GCSE’s two days after the end of my radiation treatment. As I write this I can still feel the heat of the school hall that afternoon. I remember sitting with my elbows pointing outwards to protect my underarms that had been burnt from this treatment and were weepy and sore. I was determined to sit my exams which had given me the focus I needed to get me through all of the treatment and would allow me to move forward with my life and bury the harrowing experience in my life which had been life threatening at such a tender age.

That’s just what I did. I moved on with life. I met my soulmate, we married and rather miraculously went on to have two beautiful daughters. I was told the implications of treatment may leave me infertile. I actually conceived naturally and really without planning!! Hence the arrival of my girls who were born 20 months apart.

Some of us just are not dealt a smooth ride in life. Something happens and we are faced with a cruel and bumpy journey. I discovered a tiny lump in my breast in the bath one evening. I hoped my worst fears wouldn’t come true but it wasn’t to be. I was diagnosed with grade 3 triple negative breast cancer. I recall being calm and phoning my friend immediately to collect my girls from school at the end of the day. They were only 7 and 5 at the time and I was 36. As I put the phone down I fell to pieces in the consulting room. I honestly thought I wouldn’t survive and I certainly wouldn’t be here to watch my children grow up and flourish. I was so scared with visions of all scenarios flashing through my mind. I took all the treatment offered to me, and I was going to do everything I could to help myself and survive. I was the patient who didn’t want to know too much. I needed comfort and reassurance from my medical team that they were there to save my life. At home I was so brave and I shielded my family from everything including my inner most thoughts. I was ‘mum’ the home still needed to run smoothly and I needed to be there for my children. Every morning throughout my treatment I would get up and put my makeup on in an attempt to try and make myself look the best I could even though I felt so rough. Behind all of that the only place I could allow myself to crumble were the consulting rooms of my local hospital when I attended for my treatment. 8 sessions of chemo and surgery. Initially a Mastectomy with immediate diep flap breast reconstruction. My choice 18 months later was to have a second mastectomy and reconstruction this time using the tissue from my bottom. But the reconstruction failed on that occasion and I made the decision to have a third attempt using my other buttock. (even bum lift hurrah!) 26 hours of surgery with the most amazing surgeon in my eyes anyway, but I know we all feel the same about our surgeons.

With my treatment coming to an end I found this enormous strength growing within me. I wanted to do something that could potentially help others at the same time as healing myself both mentally and physically. I decided to run the next London Marathon on behalf of the charity Breast Cancer Now (formerly breakthrough breast cancer) I wanted to raise funds to ensure that better treatments are constantly being developed to treat future patients to make their journey a little more bearable. I would also look after myself with the training regime and once more it gave me the focus I needed. I think it’s so important not to dwell too much on the negative things that can happen in your life. I organised fundraising events to attempt to reach my £2000 target and boy did it feel like an enormous amount of money to raise. I was blown away with people’s generosity and support to the cause that I have to believe is going to help to save thousands of lives. So as I pounded the street in all weathers the donations steadily kept coming. As I stood on the start line of the 2010 London marathon the realisation of what I was about to achieve suddenly hit me. I needed to cross the finish Line to feel worthy of raising a staggering £10,289 for the cause. That’s one challenge to have on your shoulders. Today those 26 miles remain the hardest miles of my life as I reflected on everything that I had been through. Thousands of lives are lost each year from this terrible disease but here I was running the marathon and raising thousands of pounds that would benefit others. That was the reason for my huge smile as I crossed the finish line weary and sore some hours later.

So with the marathon behind me the final part of restoring myself to my former self, the cherry on top of the cake, nipple reconstruction followed by Tattooing! The day I walked away from the hospital wards following that final stage of surgery I wailed like a baby and I was crying for different reasons than those on the day I entered the hospital to be faced with my diagnosis. When I didn’t know what lay ahead for me. This time I was leaving behind the team of people who had got me through things so graciously and had become my best friends. Nothing prepares you for that sense of loss you will feel when you say goodbye to those who save your life.

I had to do something to recognise these heroes of mine. I decided to write my memoir with proceeds going to the NHS Trust that ultimately held me together through my challenging moments and I have been overwhelmed by the positivity my book has received. A story I wanted to be inspirational to anyone facing their own journey today. I am an ordinary mum treated by my local NHS hospital a hospital I feel many people really value when it is needed the most. I’m delighted that many breast cancer patients have taken great strength from reading it.

Today nearly 9 years since my diagnosis I am in great health. I’m actually writing this sitting in the sunshine enjoying a coffee as I look out on to the Mediterranean taking a break visiting my family.

I’m now an avid supporter of Breast Cancer Now and continue to fundraise on their behalf. I really would love to see the day when nobody has to face the fear of dying of this devastating disease. I only organise simple events like afternoon teas. But by bringing people together to enjoy coffee and cake could actually save the life of someone else, after all it is perhaps what has helped to save my life.

I have set up a local group on behalf of another charity called Keeping Abreast, to support those considering breast reconstruction. It’s certainly where I feel my passion lies today and it’s important for others to see that you can come through your experience and achieve things that you would have never imagined would be possible. I know it may only seem like A very small gesture but I can’t wait for our lovely group to reach the stage that we can purchase our first bra vouchers so that patients can leave hospital with a voucher to treat themselves once they have recovered from surgery and to know that there are others thinking of them at a time when they are living a daunting experience in their life. I’m absolutely convinced my fundraising efforts won’t finish here as I think this is my way of bouncing back from my own difficult experience.

For those who would love to read Worms On Parachutes it is available from Amazon.

I hope you enjoy reading it.

Lots of love

Sarah-Jane Phillips

Thursday 12 May 2016

Running Against Metastatic Breast Cancer ~ Naz - HuffPost Blog

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“Finally, the tears found their way to the surface, slowly but surely, I was crying. The warm thunderstorm had quietened but I didn't mind the rain. In a strange way, it was comforting.

Naz’s latest blog for HuffPost…Running Against Metastatic Breast Cancer, speaks of her distress when she found out one of her friends had been given a stage 4 breast cancer diagnosis.

Please do read Naz’s emotional account here at HuffPost….

Thursday 5 May 2016

Just run with it ~ Caroline

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It’s OK to not be OK. It’s OK to ask for help and to accept help when it’s offered, without feeling like a failure. It’s OK to be angry. It’s OK to scream, cry and ask why me?

I did none of these things, at least not initially. Instead I laced up my trainers and did what I do best.  I ran. I ran on beaches, through the countryside, on the London pavements. I ran on my own, with only my thoughts for company.  Actually that should be thought……I have cancer, I have cancer, I have cancer, there wasn’t any room for anything else. 

How ironic. Me. Marathon running, non smoking, healthy eating, skinny me. People like me don’t get cancer. We live till we’re 100 and die in our sleep - at least my lifestyle choices were made with that goal in mind.

I wasn’t the first member of my family to be afflicted with the disease. 18 years previously my uncle had been diagnosed. Yes men can get breast cancer too.  He found great solace and support in the charity Breast Cancer Care, and went on to become one of their volunteers, fashion show models and committee members, a role which his wife also adopted enthusiastically when she too was diagnosed 10 years later. So when in 2007 I decided I wanted to run the London Marathon, raising money for them seemed an obvious choice. Little did I know that 7 years later I would be the one calling them for help and advice.

Fast forward to 2014. I was 36 years old, my children were 2 and 5. I had a job I enjoyed, was happily married and above all was extremely fit. Life was good. Until all of a sudden it wasn’t.
The weeks that followed my diagnosis were surreal. I didn’t look ill, I didn’t feel ill, so how was it possible I had a life threatening disease?

I am a medical professional but I didn’t know a great deal about breast cancer. A family friend had had it when I was growing up, and sadly died whilst her children were still young, so of course she immediately entered my mind, regardless of the fact that my aunt and uncle were both still alive and well many years after their treatment ended. I looked at my children and thought of not seeing them grow up, not seeing my grandchildren should my children decide to become parents one day.

I approached this chapter of my life with my usual pragmatism. I just got on with it. People use words like fight and battle but the reality is you just do as you’re told. Go here for a biopsy on this date, you’ve got a CT scan on this date, a pre op assessment on this date, surgery on this date (actually I delayed my surgery by a week so I could go to a friends wedding). You have to accept that your life is no longer your own, your life belongs to cancer, because cancer dictates your daily routine.

I continued to run every moment I got. I had been signed off work at my GPs insistence, who told me my full time job for the next year was being a patient. Sleep had become elusive due to anxiety, so I was on sleeping pills which left me feeling drugged. I spent many hours in hospital waiting rooms but couldn’t concentrate enough to read a book or a magazine. Instead I listened to Passenger on my iPod - 'Life is for living, so live it or you’re better off dead' over and over again.

As a species human beings have an awareness of death from an early age. We all know that death is inevitable, what we don’t know is when or how. Most of us don’t dwell on this fact and it wasn’t something that I really thought about until faced with my own mortality. The reality that I really might die came crashing down on my husband and me in a grotty consulting room in an east London hospital one June afternoon. We were there to get the results of my lumpectomy and sentinel lymph node biopsy. Instead of the usual 2 hour wait we were ushered straight into the room and told the bad news. Not only had the cancer spread to my lymph nodes, the margins for my lumpectomy were insufficient. This meant a number of things. I needed more surgery, I would almost certainly need chemotherapy, but there was also a risk that the cancer had spread beyond my lymph nodes and metastasised, which would deem it incurable.

I had 7 days to wait, not knowing my fate. In that time I had bone and CT scans to look for signs of spread. Despite being advised not to run for 3 months after surgery I ignored my doctors and ran anyway. I still didn’t look or feel ill, my surgery site had healed well and I needed to pound the pavements for my sanity. 

For that week I lived in a parallel universe. Life continued as normal around me, whilst I existed in my cancer bubble. Back in the hospital waiting room, my mind couldn’t comprehend the enormity of my situation. As my name was called the short walk to the consulting room felt like a marathon. Finally after what seemed like an eternity I was told the scans were negative, treatment would still aim for a cure. I was not going to die, not yet, anyway. I felt numb but quietly relieved.

5 days later I had a mastectomy and the remaining lymph nodes removed from under my left arm. Surgery was uneventful, although this time I knew my running shoes would be remaining firmly by the door for the foreseeable future.
Fortunately I had a backup plan in the form of my bicycle.

Chemo started in August and it completely floored me. In my usual blasé way I totally underestimated the effect it would have.  However I knew the effects were cumulative, so I was determined to make sure I was feeling as normal as possible before the start of the next cycle, otherwise the next 4 months were going to be a one way road to hell. And for me, the best way to feel normal is to run. 

Chemo day was a Tuesday. The amazing help from family and friends meant I could completely write off the next 5 days. No cooking, childcare or school runs meant I didn’t have to leave my bed if I didn’t feel like it. Then on day 6, Monday morning, life returned to normal.  I got up, got dressed and re entered the world, and most importantly, went running.

Initially cycling was a reasonable substitute, but I was itching to regain my running form. The first post chemo run was always incredibly hard - 4 miles of wading through treacle wearing lead lined boots. But as the days went by it got progressively easier. I still did parkrun from time to time, and I even did a 10k race between my 3rd and 4th cycles. The icing on the cake was winning a 5k race only 5 weeks after my last chemo cycle, and a 10k race a month later. I joked that tamoxifen was my performance enhancing drug but the reality was I was more determined than ever before.

2015 was my year to put the pieces of my life back together. Cancer may have left my body but it certainly hadn’t left my mind. I needed to figure out a way to incorporate it into my life experience in a meaningful way. Drawing a line under it, moving on, putting it behind me – these were not things I could relate to. I needed to find the new me and the new me included cancer.  Thankfully I have had brilliant psychological support every step of the way, which has taught me so many things about myself I never knew, and helped me to discover the way forward.

Towards the end of 2014 I was introduced to the concepts of mindfulness and self-compassion. I read many books on the subjects and began a regular meditation practice. Initially this involved using various apps and You Tube, but gradually I felt confident enough just to sit quietly and notice whatever was going on.  I completed two 8 week long mindfulness courses at the London Buddhist Centre, and now, over a year later, can definitely say that regular meditation has brought many benefits to my life.

I was accepted as a model for the annual Breast Cancer Care fashion show in London and also asked to give a speech to the audience telling my story. The old me would never have agreed to speak in public to more than 800 people, but not only did I do it, I loved every minute of it.

I competed in my first triathlon less than 8 months after finishing chemo, and have 2 more lined up this year. My body has continued to try and throw a spanner in the works at every opportunity, firstly in the form of an ovarian cancer scare (thankfully just a scare) and then an osteopenia diagnosis, not quite as bad as osteoporosis but on the way. 

I have become a vegetarian as there is a lot of, in my opinion, fairly conclusive evidence that our consumption of animal products is a huge part of the reason certain types of cancer are reaching almost epidemic levels in the western world.  I am also trying not to eat dairy products, but for a girl who used to joke that her 5 a day were butter, cheese, ice cream, cream and yoghurt this has not been easy.

A couple of weeks ago it was 2 years since I found my tumour. According to my oncologist the fact that I have made it this far without a recurrence means it is less likely to come back. However statistics are just numbers and have no bearing on a particular individuals chance of survival, so I will never be complacent. I know too many people who have fallen foul of statistics and are no longer with us to rest on my laurels.

Cancer no longer keeps me awake at night, although it does feature in my dreams. There is no doubt in my mind that my life is on a different trajectory than it was pre cancer. The changes may not be immediately obvious to an outsider but my perception of life has changed.  Cancer has given me opportunities I would otherwise not have had, introduced me to some amazing people, and allowed me to be the recipient of some wonderful acts of human kindness. That is not to say I am glad it has happened, but I am grateful that something good has come out of it.

My body continues to astound me by being able to comply with all I demand of it, despite everything it has been through. Our ability to recover from even the worst of trauma is a testament to human resilience, whether I am more resilient than the average person I cannot say. I was called inspirational more times than I can count whilst going through treatment, but as my friends know I don’t feel deserving of such an accolade because I really was just being myself, and trying to keep things as normal as possible for me and my family.

I live with the knowledge that it could come back at any time but I have accepted that. It doesn’t cause me anxiety, except occasionally around appointments and scan results. I don’t consciously think about it but it is always there in the back of my mind, an unwanted intruder.  And if I’m having a bad day and feel like shouting and screaming and asking why me?  I put on my running shoes and head out the door into my world.