Tuesday, 19 December 2017

Feature ~ Introducing the BRiC Admin Team

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 Me ~ 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."


"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."

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".

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........"

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."

About Me ~ VICKY 

"Cancer has been in my life for over 11 years now as 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 since late 2015 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.

Since joining BRiC I've had a go at writing a few blogs (one with Tamsin published on HuffPost), been in the newspaper, been to the Conservative Party Conference in 2016 lobbying MPs and to the Houses of Parliament, once lobbying MPs and once by personal invitation of an MP who was touched by my story.

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".

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.



No comments: