Friday, 29 December 2017

Poem by Debbie

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We are delighted to have been given permission to share this poem by Debbie which describes the complexity of her reaction on finding out she had breast cancer and the approach she decides to take to treatment:

The moment was surreal,
The words did not sink in.
The moment I was told of the cancer growing within.
My whole world just collapsed,
My feelings were just numb,
This really isn’t happening,
I should be having fun.
Why did it have to choose me?
What was it I did wrong?
My reactions are to fall apart,
But I know I must stay strong.
I live alone, what will I do?
How am I going to cope?
But a voice inside says ‘fight it girl’
And never give up hope.
So, fight is what I’m going to do
Though the journey will be tough
But I know that I will conquer it
If I fight hard enough.
And I know there will be dark days,
When it gets too much to bear.
And I’ll have to learn to take the support
That’s for me out there.
And so begins the journey
I hoped I’d never have to make.
And I know the road is bumpy, 
Whichever route I take.
But I know I’m going to beat it,
And I know it will take time.
But hear me cancer when I say
“The victory will be mine”
By Debbie


Tuesday, 19 December 2017

Feature ~ Introducing the BRiC Admin Team

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This week, from 13th - 19th December, we plan to introduce you to the BRiC admin team, Anita, Caroline, Jan, Jenny and our Deputies, Tamsin and Vicky as well as to Naz who Heads the BRiC Centre.
These amazing women, who volunteer their time, energy and skills to support our private group, have (very reluctantly!) agreed to step out from behind the scenes, into the limelight.
Beginning later today, we will be sharing a daily post about each of us to give you a greater insight into who we are, how we work together to support our private group which now has more than 1,100 members, as well sharing our own pathways to resilience.

About us ~ ANITA

"This picture is of me in Tenerife earlier this year in a dress I loved when I bought it on holiday, but later hated after it turned a load of white washing pale pink! I have no idea how they got into the washing machine together, but this scenario is quite typical of how my life is these days. I've gone from being mega-organised (a full week of meals planned on Sunday night, clothes sorted into co-ordinated outfits, CDs stored alphabetically) to someone who lurches from day to day in a bit of a daze. Intentionally I might add.
My life now, just over 3 years after breast cancer diagnosis, is very me. By that I mean it's quiet and simple, consisting of lots of alone time with a good smattering of sociable activities, such as singing in a choir, volunteering at a community cafe and long lunches with friends. I like nothing better than to potter at home. My day will always include a walk or two with my dog, come rain or shine, and I enjoy yoga, reading, meditation, baking, crafting, writing, and catching up on the tv shows my partner doesn't like! An afternoon granny nap is often part of the mix. This always feel decadent, but I've realised that getting sufficient rest is essential to my well-being.
I'm fortunate that my long term partner and I can manage without me working, and time is far more precious to me than money. Between us we have two sons, two daughters, five grandchildren and a great-grandson. Sadly most of them live far away at the other end of the country, or in the case of my youngest son, the other side of the world! We do our best to keep in touch, thank goodness for FaceTime!
BRiC is a huge part of my life. My fellow admin team members are now great friends, and popping in to the group regularly to provide a few hugs here and there is something I love to do. Sharing in the group keeps my fears about cancer in perspective and helps me to maintain my peace of mind.
I'm fortunate to be feeling generally well these days, but I never forget how quickly our health can be taken from us. I often ask myself, what would I change if it was my turn to be diagnosed with secondaries? I like to make sure the answer is Nothing."
Anita


About Me ~ Caroline



"I was first diagnosed with stage 3 breast cancer in August 2015 when I found a thickening in right Breast. Initially both my GP and myself thought it be a benign condition called fibroadenosis but she made a prompt referral to be seen. I am a consultant oncologist and when I saw the ultra sound pictures and the consultant radiologist's face, I just knew it was bad. I very quickly started chemotherapy for 8 cycles - despite having insider knowledge, the reality was much worse than I expected - particularly to the T (docetaxol) bit - by the end, I had no hair, eyebrows, nails, awful sore skin hands and feet and numbness in hands. But we were delighted, when after mastectomy and node clearance, no cancer could be detected. I continued on to radiotherapy and herceptin - plus zoladex and exemestane.
I came out the other side physically and emotionally battered. I am mum to two little girls - at the time aged 9 and 3 and full of fear for my family. My husband is very supportive but it’s been very hard for him. My family live overseas so we have relied on amazing friends but I still hit the wall of emotions that seems common around end of treatment for primary disease.
By September 2016, I was back at work and trying to deal with my emotions yet stay objective and yet supportive to my patients - this was really hard. Thankfully, my area had excellent psycho-oncology support and counselling and a mindfulness group helped me to understand that I was grieving for the loss of the old me and to take time to process that.
By January 2017, I felt much brighter and felt like I was moving forward. Then on the 9th February (a year to the day of my mastectomy) I had a fit whilst driving the car with my two girls in. Thankfully no-one was injured but the children were traumatised. An urgent CT in A&E confirmed our worst fears and found a brain secondary. It appeared to be a single lesion which was removed surgically - the recovery took a good six weeks and I remained forgetful and sometimes muddling my words - frustrating for someone who enjoys quizzes, reading and was very articulate. I had a further relapse of same area in August after a month of weekly fits and had another operation and then cyberknife radiotherapy to try and prevent further growth.
The distress at moving to an incurable situation with an average life expectancy of 2 years was immense. My breast care nurse told me she no longer was looking after me as I had secondary cancer and we were left with zero support (although my consultant does his best).
I have had to give up my career, I can’t drive (not great in a rural area) and I am not the person I was. It breaks my heart to think of my family losing me at such a young age - I know I won’t see them finish school.
I have dealt with this the best I can with amazing help from our local Hospice. I continue to exercise, enjoying ParkRun, walking the dog and spending time with girls which I wouldn’t have done so much if I was still working. I try to practice mindfulness when I remember!
I have been very angry at the lack of support I get from a nursing perspective and have got involved with Breast Cancer Care’s campaigns to improve services for patients with secondary breast cancer. Recently I went to the Labour Party Conference (6 week’s post op - was determined to go!) and to a meeting at the Houses of Parliament (a week post cyberknife!) This has really helped me feel useful again.
For now, it’s about trying to seize every day but also be kind to myself when I feel low. This group has been a lifeline for me - it is hard to go to support groups when you are also a doctor but I have never felt judged or felt criticised for the sometime failings of the NHS within this group - for that I am everlastingly grateful."
Caroline



About Me ~ Jan


"A little bit about myself and a rare photograph where I am not hiding behind the dog or a grandchild!
I’m 54 (not sure how that happened) and currently still work full time, but am hoping that will change fairly soon. I was diagnosed with invasive lobular breast cancer when I was 48. I found it purely by chance as I couldn’t feel a lump, there was just a barely visible dimple. I remember my surgeon telling me that on the MRI they could see two tiny spots on the same breast but on the outer edge which could also be tumours so I had the option for a lumpectomy and “wait to see if they develop into anything” or a mastectomy straight away. I didn’t hesitate and went for the mastectomy – which turned out to be the right choice because the tests showed that the two spots were indeed cancerous.
All that was almost 6 years ago and my life now is in some ways very different, in some just the same. I am more easy-going, I tend to worry less and I definitely do less housework! I’ve been married to my hubby for 29 years, we lived together for 6 years before we got married (the wedding was just an excuse for a party really). We have four grown up children, one still lives at home, and the others live fairly close to us, so we see them regularly. My first grandchild was born just before my diagnosis, my second three years later; they are the light of my life and one of the reasons I am planning on retiring soon is so that I can spend more time with them. We currently live in Warrington in the North West, but the plan is to move to Wales – a place in the country…if we can find the right place. Despite living in a large town, I am a country girl at heart and I need green fields around me to feel at peace.
About two years ago one of my cousins died suddenly, from a fairly rare type of cancer, tests showed he had a genetic defect…long story short I too have the defect. It isn’t related to my breast cancer (that was just bad luck according to the endocrinologist who is dealing with my genetic defect) but it causes a variety of cancers so I have to have a range of tests every year to look out for them, MRIs, CTs, 24-hour urine samples, blood tests… I’ve got to say it feels quite reassuring to be having those tests, because I figure if there’s anything lurking it’s more likely to be picked up. On the other hand, there are days when I wish I’d never have to see the inside of a hospital again! We got the most amazing news earlier this year that our two grandchildren are both clear of the defect. I don’t think I’ve even been happier than when I heard that news.
I joined the BRiC group two months after it was formed. I found it via a friend and immediately knew I would feel at home here. It’s been a huge support to me when I’ve had wobbly moments. I love the honesty and openness of our members and the way we all support each other. Knowing that the things we go through, the side effects, the long-term changes, the emotional issues, are all shared with others is so reassuring. I was honoured when Naz asked me if I would join the BRiC admin team and I enjoy being part of something so helpful".
Jan



About me ~ Jenny



"I'm 55 now, and when I was 48 the bomb that is a cancer diagnosis went off in my life. At the time my children were 24, 22, 14 and 12, and like most of us my first thought was "how do I tell the kids?" As it happens they had all known I was going for tests as one of them had asked for a lift that I had had to refuse as I had a GP appointment for the lump I'd found. She asked why I was going to the doc so I told her.

I have always been honest with my children, even for the most difficult of circumstances, like when their dad died suddenly six years earlier and they wanted to know how, so I told them the truth without sugar on. I believe that honesty enabled them to deal with it and move on because they knew there wasn't anything else that I'd kept from them, and it was the same with my cancer diagnosis. I explained what was going on (in brief, they didn't want the details) and encouraged them to ask anything, with the assurance that I would tell the truth.

As with many families, a lot of our conversations happen in the car while mum plays chauffeur, and my youngest chose the moment when I was navigating a tricky roundabout on the way home from school to ask, "what happens to us if you die?" Her older sister exclaimed "you can't ask that!" but I had no problem with the question, other than having to avoid causing an accident on the roundabout! I had told them lots about what was going to happen to me (hair loss, exhaustion, nausea etc) but I'd missed what was really bothering them, which was how my diagnosis would affect THEM. I was able to reassure them that I wasn't about to "pop my clogs" any time soon but if I did their older brother and sister were grown-ups and would take care of them if the worst did happen. I had been told that my cancer hadn't spread beyond the breast (also known as secondary, or metastatic cancer) and I was confident that they would be grown up and living their own lives before mine ended. They were then able to get on with what they needed to do, and were so supportive, both to me and to each other, because again they knew I'd been straight with them.

Fortunately what I told them has turned out to be the truth and my youngest is now at university, the next one up is in France, their oldest sister is in Hampshire and my son is in Canada - they are all busy living their lives to the full and I couldn't be happier for them or more proud of them.

Meanwhile I now have an empty house but that comes with the advantage that when (if!) I manage to get it tidy, it might even stay that way!

I joined the group a couple of years ago when it was just starting up, after taking part in one of the research projects that Naz and her students have been running, and I was privileged to be asked to join the admin team.

My brush with cancer has introduced me to a really diverse group of women across the country, and I count them among my closest friends.

How's this for a starter? I don't really like talking publicly about myself! I'd like to use a pic of my family with my dad at his 92nd birthday, but I'm in the car on the way to Devon and the pic is on the mantlepiece at home........"

Jenny

#BRiCResilienceTeam



About Me ~ Tamsin


"This photo of me was taken earlier this summer at a Lavender Farm (or was it a wasp zoo?) in August. The observant among you will notice I am trying to hide my lymphodema sleeves. (I'm waiting for someone to make attractive made-to-measure garments as sadly Pebbles and Lymphadivas do not).
My daughter was 2 years old when I was diagnosed with breast cancer in June 2009. My greatest fear was whether I would be alive to see her off on her first day of nursery. I’d noticed a strange, painful thickening below my right collar bone about 6 weeks previously and I'd known instantly that it was something serious. My oncologist warned me not to Google ‘triple negative breast cancer’ and so all through 4 cycles of EC and 4 cycles of Taxol, I steered clear of the internet. After chemo, I had a WLE and lymph node clearance and then 6½ weeks of radiotherapy, finishing treatment almost a year later. Like many women, the hard work of processing the experience began then, but my sense of loss was tempered by a profound gratitude for my life which I think really helped me to cope with the many challenges I faced.
The story of how, apparently against all odds, I ended up finding out I had a BRCA1 mutation a year after I finished my treatment, and a half-sister, has been the subject of much media interest. Its a ‘good news’ story and admittedly its one of what I call ‘my silver linings’. But the real story was the struggle to decide on having a preventative bilateral mastectomy even though I knew I would do everything in my power to avoid getting breast cancer again. I’d love to say that the it was a success, that all my fears were unfounded, but it was fraught with complications, including a week in high dependency care.
My decision to have the surgery in 2012 probably saved my life because an occult triple negative breast cancer was discovered in the tissue removed from my breasts which had not shown up on scans. This meant more chemotherapy, this time carboplatin and docetaxel. I had to have two further operations that year, one was an emergency procedure whilst I was on chemotherapy.
A year after I finished treatment for the second time, I had my ovaries removed to reduce my risk of developing ovarian cancer. By this time, I had developed lymphedema in my right hand and arm (an as yet, un-told chapter about my life on Planet Cancer) and I now have it in my left arm and trunk too.
The only person in my life to have called me “rare and unusual” is my surgeon. I don’t think it was a compliment. I’ve had four mastectomies in total (yep, another long story) due to complications arising from the reconstructive surgery. The last, in March this year, following an infection some 5 years after my surgery.
I give cancer no credit for the positive changes I've made. I take the credit... Yes, I'm wiser, but I'm also more vulnerable. My scars run deep and the losses have been many. Yes, I have a better sense of what's important, of what gives my life meaning, but I also experience pain and fatigue and this makes living according to my values a huge challenge! Second time around, it’s felt like starting again because the changes I've made to so many aspects of my life (enforced and chosen) have been made as a result of cancer. I can see growth (Oops, bad choice of words). Yes, I've a confidence I didn't have, but it goes hand in hand with a vulnerability. I am kinder to myself. I try not to envy the person I was, so I appreciate what I have. I practice gratitude. I feel an intense joy in being alive, but I can get quite a lot more upset when things go wrong. It matters more. I appreciate my partner, my beloved daughter, my family, my friends, my colleagues. I tell people I love them. I don’t need any excuse to do anything nice. I've felt like I'm fearless in some ways (and more terrified in others). I've done things I've never thought I'd do - written blogs, been on radio, appeared in newspapers, been to the Houses of Parliament. But sometimes, I feel ambivalent about these things because they stem from cancer and I will not call cancer a gift. Ever.
I think there's a lot of pressure to 'be positive'. I definitely presented a 'positive' front - my public face - to my family, to protect them and myself. I also feel protective of my true feelings and there are some places in my mind I find hard to go.
Naz asked me to help her with the BRiC Centre in the Winter of 2015. I could not have imagined the impact it would have on me - I've learned so much from her and from other women in our group and have experienced a kind of two-way healing - by giving support to others and allowing others to support me."
Tamsin


About Me ~ Vicky


"I’m Vicky and in 2006 at the age of 31 I had the shock of my life when diagnosed with breast cancer. Following this life changing event, I had the enormous pleasure of welcoming my two children into the world and have been busy as a stay at home Mum ever since.
Sadly my relationship with cancer was not over and in 2015, at the age 40, I was diagnosed with metastatic breast cancer, which means the cancer has invaded elsewhere in my body and is now incurable, so changing the shape of my future.
At a time when I was treading water and losing my way a little, I found some wonderful support groups and through those was fortunate to discover The BRiC Centre, dealing with a subject I can truly relate to…resilience in the face of adversity. To then find two amazing women, Naz and Tamsin, and be able to work closely on this project with them has been extremely exciting. Since then we have recruited four more amazing women to the team who have been perfect for the role, but most of all we've made great friendships.
Sadly, in September 2017 I was given the news that my metastases have spread further now into major organs which changes the goal posts again. I don't know what the future holds but I'm using my resilience and taking one day at a time.
I like: reading, crafts, coffee, cake, comedy, chocolate, curry, science, space and lists! I don't like: cancer".
Vicky



We round off our feature about the BRiC Resilience Team, with the extraordinary Naz, who founded the Centre in 2015:
About Me ~ Naz


‘It is not the strongest of the species that survives, nor the most intelligent, but the one most responsive to change’, Charles Darwin.
They say that the toughest iron is made of the hottest fire. Prior to getting breast cancer, I considered myself a tough iron: I would resist vulnerability and I would fight. I was ‘strong’ and I was ‘tough’. I would withstand the storm. I would put my vulnerability firmly into the ground. No room for sadness, pain, anxiety or fear, I would not let them ‘get in the way’. Yes, I was untouchable. I was resistant.
Almost five years ago, I was faced with breast cancer in my 30s, with the love of my life, my beauty just under three years of age. When undergoing my course of chemotherapy I got sepsis three times, and my daughter’s voice: “Mummy, I will help you get better”, still in my ear loud and clear. It seems very fuzzy now, the images, but the senses very real. My daughter is nearly 8 now, a young lady, the light of my life and my direction.
My diagnosis was a turning point in my life, with vulnerability being my ONLY option. Yet somehow I felt strong, having hit rock bottom. I met many amazing women with primary and secondary breast cancer who’d been given a timeline, yet their spirits were timeless. What did I learn from them? I learned that the fight to survive, paradoxically, makes survivorship harder. I learned that the courage to live with fear can facilitate survivorship. I learned that resilience in the face of adversity is about flexibility and responsiveness to change. It’s about melting and growing. It’s about elasticity and plasticity. It’s about finding toughness in vulnerability and sensitivity in rigidness. To get battered in the storm, and keep going. To feel the agonising pain, but embrace it with the wounds and tears. To feel your feelings of fear and take them bouncing forward with you. How can we learn to be resilient?
I am an academic and Professor in Experimental Psychopathology, a dedication I chose when I was very young. I was passionate to work on anxiety and depression, which I have been researching for over 22 years. Anxiety and depression are estimated to be the biggest cause of disability worldwide with millions affected every year. In my research, using a variety of neuro-imaging and experimental methods, we have identified the neural and cognitive pathways that characterise anxiety and depressive vulnerability and play a mediating role in the occurance, sustainability and recurrence of these disorders. We have shown that in emotionally vulnerable individuals, cognitive flexibility and attentional control are impaired. We have documented that if these processes are targeted then it is possible to reduce vulnerability and build better neural connections towards resilience. Clearly, an important translational impact of this work is in new interventions that we are designing to build resilience. These interventions exercise brain plasticity to increase processing efficiency and cognitive flexibility with the aim to better manage our emotions especially under stress.
I founded the BRiC Centre (the Psycho-educational Centre for Building Resilience in Breast Cancerancer), in October 2015, with the aim to translate my research on emotional vulnerability and resilience in women with a breast cancer diagnosis. Two years and we have conducted a number of longitudinal studies exercising attentional control cognitive flexibility towards resilience. We have over 3,200 followers. Our private psycho-educational group has over 1,150 UK women members with a primary and secondary breast cancer diagnosis who work together towards building resilience. We engage in research led discussions on our breast cancer realities and hold hands in times of tears and joy. We have launched a number projects where we have showcased the growth and resilience of our members through works of art and stories. Each one of us comes with hidden talents and ambitions that we share and practice in survivorship. Each one of us is unique and impactful. Panning for Gold is our blog, and is open to any woman with breast cancer who would like to share her journey and beyond. We have shared many stories. Come and join us on our road to resilience.
Long may it continue.
Naz




Saturday, 16 December 2017

Weekly Discussion Summary ~ Our BRiC Private Group Values and Expectations

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"This group stands out because it focuses on being with cancer and how we do that".
In our weekly discussion we thought about our values as a group and our expectations of one another.
Naz founded The BRiC Centre in October 2015 and since then our private group has grown rapidly, with now over 1,100 members. Supported by an amazing team - Anita, Caroline, Jan, Jenny, Tamsin and Vicky - we strive for our group to be a rich, nurturing, supportive, open-minded place, blended with love. Above all else, we value confidentiality and safety, we value warmth and encouragement and we are respectful of each other's needs. We listen to one another without judgement and offer our support unconditionally.
We are women of all ages, from all walks of life and differing backgrounds, with many and varied life experiences. We are women with primary and secondary breast cancer. We do not see primary and secondary breast cancer as separate entities, but instead, as being on a continuum, where a better understanding of our common and particular experiences and needs can foster greater mutual support and resilience.
Some of us are recently diagnosed, others are going through active treatment or are on maintenance treatment; some of us are living with long-term side-effects, or, do not see ourselves as falling easily into neat categories due to our very particular experiences.
We celebrate our successes and the many and varied ways we practice our resilience - our poetry, our art, our photography, our writing, our singing, our fundraising, our running and other physical achievements, our campaigning and lobbying. We cheer on those engaged in new endeavours as well as those reconnecting with activities they enjoyed before being plunged into the uncertainty that accompanies a cancer diagnosis.
We hold hands through the bad times and through our shared hardships we form strong bonds; we share all sorts of emotions - our worries, our fears and sometimes our tears. We light candles for those we have lost, carrying love in our hearts which shine with the light that we all hold for each other.
Our group is a place to think, to be open, not only a home for our hearts but also for our minds, a place for ideas and debate. Not just a place to cry, but a place to laugh and to find and share humour.
It is a place with a strong sense of togetherness, as we learn to accept and try to embrace our changed selves. It is a place for us to learn from one another what resilience actually means. We embrace our honesty and value our differences. We are eager to learn, to develop and take steady steps towards resilience and flexibility.
We are a support group, but we have become much more than that. We have a sense of direction and a passion. We are a group with resilience as our aim and carry hope in our hearts.
If you are a woman with a breast cancer diagnosis living in the UK and you would like to join our private members group, please message us via our facebook page 
https://www.facebook.com/resilienceinbreastcancer/


Saturday, 9 December 2017

Weekly Discussion Summary ~ Loss of Peers and Friends to Breast Cancer

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In our weekly discussion, we shared our feelings about losing peers and our friends as a result of breast cancer.
Hearing about the death of another woman with breast cancer can tear apart the hearts of those of us who have been diagnosed with primary and secondary breast cancer. We find ourselves mourning women in the public eye, women we have never met, like Rebecca Ellison, Connie Johnson and Mao Kobayashi – to name but a few.
Why, we asked ourselves, do we feel such intense pain for women who we have never met?
It is because they are untimely. It is because we have seen too many young, vibrant women robbed of their lives. It is because some, but not all, are mothers, leaving behind children, sometimes very young children. It is because we know how much the loss of these unique, extraordinary women will hurt their loved ones and their families.
Grief for friends with breast cancer can feel more validated, but our response to the loss of women we have known through online groups and forums is often no less intense and the strength of our reaction can take us by surprise. Our discussion highlighted that losing someone who means something to us and shares our own vulnerabilities, can feel uniquely devastating. We are profoundly sorry for their loss but, importantly, it makes us fearful, reminding us of the vulnerability that we face, reminding us of what may be awaiting us and our own mortality, reminding us of our powerlessness and lack of control. We feel guilty that we are one of the lucky ones, that we have survived. We feel grateful and profoundly thankful. We also wonder why it is we are still here. Time seems to stop. We cannot find the words to describe our complicated feelings and so we remain silent. Our pain is invisible and unseen.
For some of us, anger is our first reaction, anger at a cruel disease which seems to senselessly rob us of a life long before our expected time. Others described intense sadness. Some are reminded of other losses they have experienced and the pain they felt and still feel, while others described sensing those losses that are yet to come. Women with secondary breast cancer shared just how hard it can be for them because of the looming, anticipatory fear that accompanies each loss, causing them intense anguish as they try to banish the dreadful thought ‘it could be me next.’
What can we do in these circumstances?
As humans, we naturally try to avoid suffering but Naz explained that research shows that acknowledging loss and spending time on mourning and grieving can, in fact, help us to adapt more quickly. In comparison, blocking out the pain, and attempting to push it out of our minds can cause us even more suffering. There is no prescription for how long we need to grieve or how intense the sadness, usually we find our own path and, deep inside us, we know.
Our attitudes to grief and loss are deeply embedded in our culture. As a society we are ill-equipped to deal with death, believing that immortality lies beyond the horizon of new medical innovation and technology, or if that can’t save us, then a positive attitude can. We heard from women from other cultures how helpful it can be to be able to express grief openly and dramatically. Western culture, however, does not give us a strong role model for death and grief, it's a hidden-away-thing, rituals are few and the emphasis is on ‘being positive’ and ‘being strong.’ Yet, when we focus our energy on being strong, we can forget to give ourselves permission to cry.
It can be comforting to know we have held the person who has died in our love and in our hearts. Memories become like gold, allowing us to celebrate the lives of our beloved and we know that we can carry this love forwards with us in our hearts. Gestures help, such as lighting candles and sharing happy memories because they allow us to share our grief as a group, reminding us that we are not alone. Most importantly, we can listen. Really listen, and by listening, we can open our hearts to one another. If we can be brave and we can allow ourselves to feel our pain, we can become like the sea, 'the Living Infinite,' nothing but "love and emotion".
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


Saturday, 2 December 2017

Weekly Discussion Summary ~ Coping with Fear

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"It is quite a balancing act between transforming fear into motivation and also accepting fear".
Coping with fear - of recurrence, secondary breast cancer and for those of us with secondary breast cancer, of progression of disease - was the topic for this week's discussion.
Fear is an intense and primal emotion, an almost involuntary response to danger which manifests itself in a heart pounding rapidly in our chest, heightening our senses. Maybe a rush of adrenalin wipes all rational thought from our minds. We feel a strong impulse to hide or flee.
But when we are told we have breast cancer there is nowhere to run and nowhere to hide. Our fears are fuelled by both 'the known' - that we have a life-threatening disease and 'the unknown' - by uncertainty and apprehension, by an outcome which feels completely outside our control.
Our discussion, which included women with primary and secondary breast cancer, highlighted that fear is an ever present emotion experienced by most, but not all of us. For some, the fear of spread or progression of disease is the colour that dominates our emotional landscape, for others its hue is made up of the loss of control, the certainties which were once took for granted. Some are fearful of death, of pain, whilst others fear being the cause of pain to those most precious and beloved to them, or having to say goodbye.
For some of us, fear hits only after we've finished our active treatment, perhaps because we've hit the pause button on our emotions. Our path ahead narrows while we place one step in front of another, we focus on the present, the here-and-now, on what is most important and gives us most peace and joy.
Some of us described feeling almost overwhelmed by our fears, whereas for others, gaining a mastery over their feelings was a means to becoming a protector to their fearful selves. Denial and suppression of this strong primal emotion can, we heard, also be vital to emotional and psychological survival.
For many, the nights are when we feel most alone, when we can no longer distract ourselves as we can in the day. For others, fear is triggered by a scan, or a new pain, reminding us of our vulnerabilities. Perhaps hardest of all are those times when we are unwell, when we cannot practice those things that support our resilience, like yoga, or exercise, or doing the things that matter to us most.
Naz explained that fear is a normal reaction to an uncontrollable trigger with a highly uncertain outcome. However, overwhelming fear uses up a lot of energy and cognitive resources that are needed to start thinking pro-actively, to adapt and to be fruitful.
If we can, instead of being overwhelmed by our fear we can use it to take smaller steps in the darkness, to trust our intuition. It can help if we can strive for an acceptance of our lack of (or having little) control over the situation; if we can see fear as an opportunity, not to influence the outcome, but to help us stride ahead in spite of the uncertain road ahead; if we can use it to help us to focus on those things that we HAVE influence on, how we can make ourselves stronger and happier in spite of the 'what ifs'.
Naz explained that this is NOT an easy task but we can learn, re-thinking, re-prioritising and rewarding ourselves for the little things we can and do achieve. And amongst all, showing ourselves self-compassion when we are at our most fearful.
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



Saturday, 25 November 2017

Weekly Discussion Summary ~ Be Positive!

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'A smile and a positive attitude may be helpful to healing, but not when it's forced and not when it masks our genuine distress.'
'Be positive!' It’s a phrase we often hear when we've been diagnosed with cancer. Sometimes, it's something we tell ourselves, sometimes it's the advice of well meaning friends. But what does it mean to stay positive in times of despair? How can we be ok with the times when we don't feel positive? These were some of the dilemmas we struggled with in this week's discussion.
Naz explained that when we block out unpleasantness we are at risk of damaging our well-being, whilst if we let it all in and dwell on negativity, we can feel we are becoming dragged down into depression. A balance is what we seek, and cognitive awareness and practices can help.
Apart from the primitive survival-seeking reactive brain, we do have some choice in how we deal with our emotions and our resilience gives us flexibility and helps us to achieve our happiness goals. Embracing sadness rather than pushing it away is key, and allowing ourselves to experience a full range of emotions is healthier than putting on a brave face and pretending we're fine when we are not. A smile and a positive attitude may be helpful to healing, but not when it's forced and not when it masks our genuine distress.
Our members, who have both secondary and primary breast cancer diagnoses, shared activities that help them feel better when distressed. Many and varied responses were given - long walks and baths, family, friends, hobbies, exercise, nature, pets, meditation, breathing exercises. But what emerged from this conversation was a deeper discussion about being authentic, acknowledging feelings and wanting to be real and honest about feeling less than chipper all the time. We aren't self-indulgent about our negative feelings and not one of us wrote about wallowing in self-pity. Some women look for a semblance of control (as having cancer takes this away from us) while others relax into whatever they are feeling and let it go. Some of us keep busy, others seek out peace and quiet.
A positive attitude is often expected of us by others, and of course there are times when we have to temporarily hide away our real feelings and get on with whatever we need to do. What we really struggle with is when it is implied that being positive will cure our cancer. It will not! This is especially true for women with secondary breast cancer, otherwise known as metastatic cancer, for whom treatment continues as a lifelong burden and for whom stability becomes the goal rather than cure. It is very hurtful and undermining to imply that we may have encouraged our illness to spread by not being positive enough.
Being outwardly positive can be a protective mechanism for our fear and vulnerability, but allowing the fear and sadness in also allows us to appreciate the positive in life.
We all cope in different ways according to our personalities, our preferences, our circumstances. What we must admire in all of the women who contributed is that they are working on discovering their negativity triggers and how best to deal with them. Even when bombarded with bad news and significant troubles, they go on. Support from others who understand is key.
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/

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Image credit: Buddha Doodles whose images are certain to lift the spirits!






Friday, 17 November 2017

Weekly Discussion Summary ~ Hopes and Dreams

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'My dream. My passion. My hope. They are you. We stand together.'
Naz introduced this week's discussion about 'hopes and dreams, goals and ambitions' by talking about her own ambition: The BRIC Centre, our private group, making a difference with her research, spreading the word all over the world. She speaks for all of us who have had a breast cancer diagnosis and her goal to bring women with primary and secondary breast cancer together.
During active treatment (surgery, chemotherapy, radiotherapy) many of us felt our goals may be frozen as we lurch from one hospital appointment to another. Our focus is on getting through it one day at a time. We shared how our plans go on hold, we pause, develop new goals, redefined goals. We must change and practice flexibility, prioritising and self-care. However, we realised that women's experiences do not fall into neat categories - 'primary'; 'post-treatment'; 'secondary'; 'recurrence' but are much more complex and varied.
A diagnosis of breast cancer can be shattering and we find we are both a different person and yet still in essence the same. Some of us emerge from active treatment treatment with the expectation that our dreams and hopes can be addressed, only to find that we need to reconcile with our experiences and come to terms with them. Women with secondary breast cancer spoke about how hard it felt to know that treatment and all that goes with it will never end for them but said their hopes and dreams are still there. Whatever our different experiences as women with a diagnosis of breast cancer, there was a sense that we had in common a greater awareness of what it means to be alive, we can become much closer to our values, we experience a clarity and a determination to tune into what makes us happy rather than worrying about what others expect of us.
Some of us slow down, choosing a quieter life, perhaps changing jobs or moving house or give up work (not always through choice but because their health prevents them from working). Many change the focus of their goals from themselves to others - we want to see children or grandchildren grow up and settle and achieve their ambitions. Others speed up and feel an energy to make the most of every moment, perhaps visiting far away places or undertaking physical challenges, taking up new hobbies, becoming creative, learning new things.
We heard about women giving up regular jobs to earn a living creating things, to become a counsellor, to take up alternative therapies, to retire early. Others remain as career focused as before, and, like Naz experience a renewed determination to achieve their goals. Others choose to balance their ambitions with studying or part-time work. Some return to the same job but view it differently, perhaps choosing not to let things worry them and finding they can relax more easily when not at work. If self-employed we might decide to keep our business small rather than push for expansion. There was a general desire to minimise stress and to practise self-compassion.
Some of us are aiming for a particular anniversary - a special birthday, a child coming of age, a wedding anniversary. Other women find themselves not wanting to set long term goals, choosing instead to live more in the present, although some admitted to finding this challenging. What really matters is time, time to love and be loved and of course we would all like to grow old.
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/

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Sunday, 12 November 2017

Weekly Discussion Summary ~ Impact of Breast Cancer on Intimacy/Sexuality

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The impact of breast cancer and its treatments on initimacy and sexuality was the subject of our weekly discussion.
Sex is - generally-speaking - a private experience which takes place behind closed doors and not a subject which we discuss openly. This means that the difficulties that many of us experience with physical intimacy as a result of treatment for breast cancer remains hidden.
Breast cancer has an enormous impact on the way we view our bodies and our womanhood, and being intimate and sexual is a big part of that. Surgery, weight gain and the fear of recurrence all exact a toll on our libido and the way we view physical - and emotional - intimacy. Where once there was passion and pleasure now there is pain and numbness, and for many a profound sadness and sense of loss.
Women with oestrogen-sensitive breast cancer are given 5-10 year's hormonal treatment in the form of tablets and/or injections to reduce the risk of recurrence. Some of us have had our ovaries removed, either as an alternative to hormonal treatment, or because we are at risk of developing ovarian cancer. Whatever our individual situation, our discussion highlighted that being thrown into an instant surgical or chemically-induced, prolonged and severe menopause is much more intense than dealing with a natural menopause and can lead to the follow side-effects which can be particularly challenging - loss of libido, vaginal dryness, atrophy and bladder infections. Unlike women going through the menopause who experience these symptoms, HRT is not an option for women with hormonally sensitive breast cancer.
Our discussion, which included women with primary and secondary breast cancer, revealed that many of us had not sought support for our concerns, perhaps out of embarrassment, or a sense that we should be grateful for being alive and our sexual identities were a small price to pay for this; or perhaps we simply did not know where to go to get help.
What can we do?
Our GP can be a useful starting-point, although many of us shared that they do not always have the necessary knowledge. Some of us had had positive experiences at Menopause Clinics where we had been given practical advice about products which could help alleviate symptoms.
Breast Cancer Care have produced a good leaflet about sex and breast cancer treatment https://www.breastcancercare.org.uk/…/sex-breast-cancer-tre…
. This blog by the breast surgeon Liz O’Riordan, herself diagnosed with breast cancer, (http://liz.oriordan.co.uk/BreastCa…/lets-talk-about-sex.html
) also offers useful advice. We love her suggestion for having a “box of tricks” including most importantly a good lubricant. Some are available on prescription so we don’t need to pay for them. YES is a highly recommended water-based product which can be used as an internal moisturiser to help relieve dryness and irritation and works better than silicone-based lubricants. Another popular product is SYLK. We also know that coconut oil or Vitamin E oil can be helpful. Her advice is that a small vibrator can really help with feeling dry and tight and it can be worth considering dilators which can help make sex less painful.
In her blog, Liz O’Riordan explains that oncology appears to be reviewing its position about the use of topical vaginal oestrogen for breast cancer patients - one school of thought was that if women used them, the tiny amount of oestrogen that they would absorb might increase the risk of the cancer coming back. However, small trials have shown no obvious increase risk in recurrence for women taking Tamoxifen. This is important because it is a very effective treatment and some of our members shared that this had transformed their quality of life. It must be a decision made by each woman and her doctors based on her individual situation
Sex and sexuality are intensely private subjects and we have made the decision not to summarise our discussion to focus on the things we can do to address the challenges we face. It isn’t our fault that sex can feel difficult and is not always spontaneous, but we have enough trust in our safe and confidential group to share some of our experiences, even if it feels hard.

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 us by facebook message https://www.facebook.com/resilienceinbreastcancer/

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Tuesday, 31 October 2017

October 2017 Breast Cancer Awareness Month project #pathways2resilience

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"Bouncing Forward with Resilience"
I'm thrilled and delighted to share our October project, #pathways2resilience which highlights and celebrates the different ways women practice resilience in their daily lives.
Every day, we will be sharing some of the many faces of resilience of women with primary and secondary breast cancer, who will be describing in ten words or less, what resilience means to them, with grit, courage, tears, hope and love.

As a Professor of Experimental Psychopathology and cognitive neuroscientist, specialising in the neurocognitive mechanisms behind anxiety, depressive vulnerability and resilience at Birkbeck University of London, when I was diagnosed with breast cancer myself, I became determined to use my experience to help women overcome the psychological impact of breast cancer.
Recent research describes resilience in terms of elasticity, and flexibility, the ability by which we can adapt in the face of hardship. Neuroscience has discovered that the brain is plastic and so it can be trained to become resilient. It can learn to become resilient. Neural connections can be strengthened and new pathways can be formed to place us firmly on the road to resilience. Importantly resilience is a dynamic process so its precise measurement should involve the trajectory of time.
I founded the The BRiC Centre less than two years ago with this mission in mind: To build building blocks of resilience in women with breast cancer. Women who are mothers, wives, partners, and sisters. Women who are teachers, doctors, and hold many responsible posts in society. Women who are left highly vulnerable after diagnosis, a vulnerability that impairs emotional and cognitive health increasing anxiety and depression as well as PTSD for years post diagnosis. Women whose fear of recurrence constitutes a major vulnerability interfering with daily life, reducing cognitive efficiency. These women are keen to improve their well-being and to live meaningful lives.
We have more than 3000 followers so far and our private educational support group has more than 1060 UK members. I'm so proud of my two deputies Vicky and Tamsin as well as our amazing ambassadors, Anita, Caroline, Jan and Jenny. Importantly, the stories of these women show how resilience is helping them bounce forward in life.
Follow our October project: #pathways2resilience to hear them.

"Making every day a good day, living for the moment."
As #BreastCancerAwarenessMonth comes to an end, we are reflecting back on the extraordinarily rich and varied ways that the 64 women who featured in our #pathways2resilience project practice their resilience. These incredible women, living with primary and secondary breast cancer, are the 1 in 8 women who hear at some point in their lives that they have breast cancer.
We are the real women behind the statistics. We are not 'patients,' we are mothers, daughters, sisters, partners and friends. We are all women everywhere.
We leave the final words for Rachel, an icon of resilience. #pathways2resilience #BreastCancerAwarenessMonth