The amazing Vicky (late deputy head): BRiC for Breast Cancer Awareness

 

We never tire of sharing the moving message Vicky Wilkes left for us all.

Vicky did so much for BRiC. She was one of the very first members and deputy head. She led our first few October projects and as we forge ahead with new ones each year, her voice is our guidance. Vicky died from secondary breast cancer on 20th August 2019.

'My relationship with cancer started in 2006 at age 31, but it was when I reached 40 that it got terribly serious and I knew my time here would be shorter than expected.

I had imagined growing old surrounded by my family, seeing my children through their school years, into adulthood, getting married and having their own children. It hurts so much to know I won't get to see these milestones but more importantly that I won't be here for them when they deserve to have their mum there on the special days of their lives. How can I leave these two children without a mum?

Each day is a gift and the only moment any of us really have is now. I don't want to go, I don't want to leave my family and friends, but I have no choice, I have done my best but it's out of my hands.

The one, worst, horrible, bad thing about this dying lark is that I have hated causing sadness. I really hope my children can be resilient and bounce back to be the amazing adults I think they can be.

I look at life through different eyes. I wish people would stop sweating the small stuff and appreciate life and how truly amazing it is. It's ok to find something annoying but then you need to quickly get over it and be thankful it's a minor issue.

As the great Stephen Hawking said.. "Remember to look up at the stars and not

down at your feet. Try to make sense of what you see and wonder about what makes the universe exist. Be curious. And however difficult life may seem, there is always something you can do and succeed at. It matters that you don’t just give up.”

So when you do go outside and look at those stars in our universe, take a deep breath, appreciate your existence and that you are able to do these things.

Think about those things that happen to you, that you put a lot of weight into, but which are insignificant....no sleep, bad hair day, don't like how you look, got nothing to wear, house is a mess...just let all that shit go! My body is wrecked, my mind is wrecked, but I see even those things as pretty insignificant because what I really cared about was how long I had left here, would I see my next birthday, my children's birthdays, Christmas.... I needed to keep going, I needed another day with my family and friends and then I needed another and then another, I needed to be here.

Appreciate your body, embrace it but don't obsess over it and look after your mind, as that will look after you. Be grateful for the days when you are not dealing with anything serious and yes it's annoying but it will go away.

Stop the stress of buying stuff you don't need, with money you don't have, to impress people you don't like!

I learned from everyone who joined me on this precious ride that is life. I have laughed and cried with you and we are all part of each others lives which has helped shape the people we are! Thank you, all of you family, friends, nurses and doctors who did their best for me.

You've given me much support and pleasure. I'm glad to have known some of you for many years and just wish I had more time with others of you I've not known for so long.

For goodness sake people, enjoy life, take risks, be kind always, love, be curious about everything, look at the diversity of the world around you...it's incredible, travel, be a badass, smile, be gentle and forgive whenever you can.

Thank you all, now go and toast life with more alcohol than is good for you on this occasion, laugh, smile and have an amazing time.

Much love and thanks!

Peace out! X"

- Vicky

30/10/2020

Gina's story: BRiC for Breast Cancer Awareness

I finished radiotherapy just as lockdown started, my oncology check up was a 30 second call to see if I was ok, there was a huge nothing, no support nothing, just news of other cancer patients not getting their chemo or radio this caused a lot of guilt in me, covid has meant not dealing with the emotional impact.

- Gina

27/10/2020

Debbie: BRiC for Breast Cancer Awareness

 

Hi everyone, I wanted to say thank you for the overwhelming support I was offered yesterday (by BRiC members.) I reached out and the response was incredible.

In any circumstances, a diagnosis can be an isolating and frightening thing. However, with Covid too, I feel we are all living in extraordinarily difficult circumstances.

My situation with secondaries has changed quickly and as a result I feel/felt disempowered and very lost. I slipped into being a patient and not me. I really miss my monthly support group, contact with Macmillan has only just been reinstated and while everyone at the hospital is lovely, I do not feel part of the process.

Yesterday many of you offered such compassion and support. I was also offered excellent information that means I can have some agency and know better what questions to ask. I am so very grateful.

I'm still on rocky ground but picking my way forward instead of feeling frozen to the spot.

This is such a wonderful space, thank you all for being wonderfully you xx

- Debbie

25/10/2020

Bal's story: BRiC for Breast Cancer Awareness

 

All my treatment finished 5 years ago, reaching this milestone, I should be jumping up with joy but instead this has created a form of numbness inside me, a constant reminder of all the detrimental effects it has had on my healing process and that of my family.

My follow up mammogram and ultra scan appointments for September have been cancelled and rescheduled for next month.

These uncertainties push my anxiety levels at an all time high!

- Bal, dressed in pink, on Wear It Pink day

23/10/2020

Sarah's story: BRiC for Breast Cancer Awareness

 

I’ve cried tonight after work - I’m a primary school teacher and I don’t feel safe at all I’m exhausted

thankfully I’m off now for the rest of the week so having an orange twirl and a cuppa to celebrate.

- Sarah

22/10/2020

Sarah's story: BRiC for Breast Cancer Awareness

 BRiC for Breast Cancer Awareness

Finished 9 months of treatment (chemo, surgery,rads) in April. Inability to take part in face to face moving forward groups or celebrate with friends has made me feel so down. Stupid thing I didn't even get to ring the bell.

- Sarah

21/10/2020

Laura: BRiC for Breast Cancer Awareness

 

Good morning Today is Secondary Breast Cancer Awareness Day and I can assure you, I’m very aware.

My first surgery to remove a primary breast cancer tumour was September 2001, my second surgery to remove a primary breast cancer tumour was September 2004 and the third time I was told, “I’m sorry, it’s not good news” was December 2007, aged 40 when I was given the devastating news that I had secondary breast cancer, also described as advanced, incurable, metastatic and Stage 4 where the cancer has spread to other organs and/or the bones and is no longer curable.

In the whole of October, there’s only one day dedicated to secondary breast cancer - October 13th; one day to acknowledge the only form of the disease that will kill you.

There’s a coloured version of this photograph but I’ve chosen to use the black and white version to emphasise the fact that not everything about October is pink.

In amongst all of the awareness raising during Pinktober, which is how many of us in the breast cancer community refer to it, take a moment to remember the 11,500 women and 85 men who die every year from secondary breast cancer. I’m smiling because I’m still here but I cry inside for the many, many friends I’ve lost to this disease; the people who didn’t get to see their children grow into adults as I’ve done, the people who were somebody’s daughter or son, the people whose cancer drugs stopped working.

31 people in the UK die every day from secondary breast cancer. It’s the biggest killer in the UK of women aged between 35 and 50. (Based on figures from 2017).

If you’ve read this far, thank you so much. I’ve got so many people to thank and so many things that I’m grateful for. Thank you to everybody in the breast cancer community space who campaigns for change whilst living with this disease daily. You are not forgotten. You are all amazing. You are unsung heroes. What you do now, others will benefit from in the future. This post today was inspired by

13/10/2020

Caroline: BRiC for Breast Cancer Awareness

 

The last few months have been challenging to say the least. I have secondary breast cancer so have been shielding. In one sense, I have been fortunate that my chemotherapy treatment and scans have continued as normal but our support group is suspended and I feel total adrift. I feel guilty that my illness has meant the children weren’t able to see their friends to keep me safe. Now we can go out, I find I don’t want to. I feel angry when I see people flouting rules. And utterly sad that this might be as good as it gets for me with my diagnosis. All those plans to go away, visit new places while I am well enough - probably have all gone.

- Caroline

12/10/2020

Pauline's story: BRiC for Breast Cancer Awareness

 On World Mental Health Day

I have felt very irritable and teary for the last few days. The whole world seems to have gone to hell on a handcart. My depression and anxiety have gone through the roof at the latest covid news and I am actually feeling totally exasperated and physically sick to be totally honest! Sorry, but that's the truth.

- Pauline

10/10/2020

Jennifer's story: BRiC for Breast Cancer Awareness

 As much I have enjoyed working from home I’m fed up of Teams meeting, dodgy wifi. Weight gain and low self esteem. Sometimes I don’t leave the house all week and apart from my hubby and son who I see once a week I miss the human contact.

- Jennifer

09/10/2020

Lis's story: BRiC for Breast Cancer Awareness

When lockdown hit I was halfway through chemo. Every time the phone rang I was terrified it would be the hospital phoning to cancel my treatment. Fortunately my chemo went ahead as planned but it was hard having to attend alone. I then had a long delay before radiotherapy started and this left me feeling very low and vulnerable. The delay was due to reducing the number of patients in the dept. to keep it Covid safe. The moving forward course and other therapies I had planned were all cancelled. It has been hard and I’ve felt very low and isolated at times. Telephone appointments didn’t suit me and I often forgot what I needed to ask.

-Lis

07/10/2020

Story of a front line #nurse: BRiC for Breast Cancer Awareness

I finished treatment 6 years ago but the annual mammogram/check up is a date that never leaves my mind. My check up was cancelled 1 week before it was due - got myself into a right old tizz about it and the fact I was terrified of catching covid as a front line nurse. When I did have my review it was very weird attending on my own - the feeling of aloneness was indescribable. I was lucky - my treatment wasn’t cancelled but I feel that my mental health struggled during the 12 week delay for my review/ check up. Think I would have gone into meltdown had it been delayed further.

- Debs

06/10/2020

Joanne's story: BRiC for Breast Cancer Awareness

 Joanne

I was diagnosed last October with stage 3 breast cancer, I was in the hospital every couple of weeks for scans then put on ribociclib to help shrink the lump down. It had gone from 3 to 9 cms in a couple months and in my lymph nodes. Then covid happened and my BCN vanished and it was months of empty waiting rooms sitting alone. Finally the surgery happened 7 weeks ago a bilateral mastectomy, first time I went in for it my temperature was a bit high so they sent me home, second time the surgeon was on annual leave as I had no idea who I was seeing, literally.. I couldn’t tell you who operated on me. I haven’t see a full face of the people treating me since the start of the year. I’m now waiting on an infection to clear so I can start chemo and have had to chase up the results on a extra tumour that was found after surgery. 5 weeks makes me wonder how far behind they are and overworked they must be. Im in fear now, that Covid is going to put us back to more hold ups in treatments. Cancer alone is hard enough!

-Joanne

05/10/2020

Lisa's story: BRiC for Breast Cancer Awareness

 

I had my final session of chemo cancelled due to Covid and surgery was on, then off, then on again. Attending appointments, surgery and in-patient stays alone were incredibly difficult and isolation at home, at a time when you need family and friends around you the most was incredibly stressful.

I suffered every complication available during treatment and I actually found myself apologising, for ‘only’ having cancer, as I was made to feel, several times, that I had a ‘second rate’ illness. I can understand the concerns, but stopping life saving treatment for fear that you may or may not catch a virus that may or may not kill you is fear on another level.

- Lisa

04/10/2020

BRiC for Breast Cancer Awareness: Karen's story

Even before the pandemic, my recovery from breast cancer had left me feeling isolated, low. Living alone and without a full-time job, I drew my energy from social meet-ups with friends and family. I filled my diary with fun, with adventures and treats to look forward to. It was how I managed my low mood and loneliness. Then Covid struck and travelling across London for hugs with my mum, coffee with friends or fixes for my escape room and theatre addictions were ruled out. As winter approaches, as the days grow shorter and darker, as new covid restrictions bite and as worries about cancer recurrence niggle, I fear for my mental health as I spend the gloomy winter months alone.

- Karen

02/10/2020

Girls gotta have fun: Caroline Humber at Breast Cancer Now Show!

'It was a wonderful day, full of excitement and emotion.'

Today we share these words from Caroline, a very special member of the BRiC admin team. She is living with secondary breast cancer.

Last week on 3rd October I took part as a model in the Breast Cancer Now London Fashion Show along with 31 other women, including fellow BRiC members Jasmin and Keely, and men, who have been treated or who are currently being treated for breast cancer.

It was a wonderful day full of excitement and emotion. For me, the joy came not only with having my hair and make-up done professionally together with gorgeous clothes but with the time together with the other models, including our own Jazz and Keely. We were of all shapes, sizes, ages and stages of disease from DCIS to secondary cancer. And a timely reminder that men get breast cancer too.

Spending time with this fantastic group, talking about our stories and shared experiences was amazing. We laughed, talked for hours – not just about breast cancer but about everything – from families and children, disappearing friends and new friends after diagnosis, our work and our lives. We laughed at how excited we were to meet the celebrities involved in the show, especially our male models to walk us down the catwalk. We were entertained by the brilliant ABBA tribute band Bjorn Again and by the wonderful Heather Small who had us all in tears as she brought us on stage to sing her song “Proud” with its chorus of “What have you done today to make you feel proud”. Just a wonderful day and I know we will all remain friends.

It was a reminder that sometimes there is no substitute for talking, especially face to face. There is something special about time with those who just “get it” – whether it be fits of laughter at the many examples of “chemo brain” to the hugs when the tears come. The week before the show I was told that my cancer had spread further into my brain and am facing whole brain radiotherapy with many side effects, including loosing my hair again. I nearly pulled out of the show and there were certainly many tears on the day having my hair styled, but talking to people who really understand how that feels meant I could find the strength and embrace the whole experience.

Support of others is so important in building resilience – it allows us to voice our fear in a way that maybe our families can’t and encourages us to do the same for others. For me, BRiC has been a lifeline, especially in the support of women with secondary breast cancer.

20/11/2019

Breast Cancer Awareness Month October 2018 ~ #MyBreastCancerTruth

#MyBreastCancerTruth

October can be a difficult month for those of us undergoing treatment for primary and secondary breast cancer, as well as those living with its effects. For all that we appreciate the pink-ribbon symbol and the efforts of charities to raise vital funds for research and support on our behalf, the prominence given to breast cancer - and arguably on preventing breast cancer - can be very painful for those of us who have already developed the disease.

This year, for our Breast Cancer Awareness Month project, we asked our members to tell us what matters most to them in terms of information about primary and secondary breast cancer.

The results are eye-opening.

Over the course of October we are sharing the stories of real women living with primary and secondary breast cancer. Our project #MyBreastCancerTruth highlights that breast cancer is more than a single story.

We are the women behind the statistics. We are the women whose lives are rich and meaningful, whose contributions to their families and communities are significant, despite our disease. 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.

Time to Save Myself ~ Anita

Joshua Ferris said in his wonderful book, Then We Came to the End, 'Almost nothing was more annoying than having our wasted time wasted on something not worth wasting it on.'

I grew up with a warning ringing in my ears that time is too precious to waste.  My breast cancer diagnosis, a little over three years ago now, has highlighted the truth of this. I know that my time on this planet is finite, cancer or no cancer, and I don't want to get to the end with regrets. I've always known this, but having cancer brings the knowledge into the forefront of the mind, and it becomes a life focus rather than a vague platitude. 

Finding the things we love to do and doing more of them sounds so logical and simple, but it's not easy. We all have the same twenty-four hours in a day.  We have a choice about how we spend those hours, wisely or wastefully. What seems wasteful to me may be time well spent for someone else, and vice versa. 

Self-compassion may be key in moving towards happiness and for me it's a life-long lesson that never quite sticks. As a carer and empath it's my natural inclination to ensure everyone around me is comfortable and content before turning last towards my own needs, by which time my limited energy is spent.  The pleasure I get from helping others returns to me a hundredfold, but I'm too tired to bother much about myself once my commitments are fulfilled. It's so much easier to switch on the tv or spend an hour on Facebook than to think about what I really need or want and then get up and make it happen. 

I don’t believe time can be truly wasted, only spent in a way that brings negative emotion.  The kinds of things that bring frustration such as queuing in traffic, waiting in line in a shop, pressing buttons on phones in a frustrating attempt find a human being to speak to...the trials and tribulations of our world mean a certain amount of our time feels unproductive. This is the stuff of living, the chores that have to be done, the time spent on activities to facilitate the smooth running of our lives. This time is a means to an end and can, with good grace, be seen as  necessary and not a waste. 

Then there’s the expectations of others. Here’s where my ‘shoulds’ kick in. I’m the good little girl who seeks praise, who wants to not only fit in but be popular. I don't like conflict, I can't bear to upset anyone. Trying to please myself as well as others is the challenging balancing act I struggle with. I don't see doing nothing very much as a waste of time, for me it is an essential way to be, for large chunks of my day. Long aimless walks, staring at the birds in my garden, pottering about the house - these things take time if they are to be done properly. However if I grab as much time as I want to spend in this way, then other things have to go. In order to preserve the gaps in my commitments I have to say No, which leads to guilt for letting people down, which clashes with my desire to help others, which contradicts my goal of putting myself first. I inadvertently find my diary full once again, I resent the people who are making demands on my time, and I get grouchy, grumpy, gloomy and glum. 

When I say I'm doing nothing this weekend, that's not an invitation for you to fill up my time. That's me saying I'm doing nothing, out of choice, so please don't ask me to come shopping with you or say you'll pop round because you think I shouldn't be on my own.  I don't want to make excuses for my choices, for wanting swathes of empty time so that I can waste it in my own way.  I'm not living in the way other people expect, packing in adventures and making the most of every opportunity to get out there and do exciting things. I've been seriously ill and now I'm supposed to be full of a zest for life. Well actually, my zest for life takes a quiet form, and it finds joy in a sunset, a robin's song and the first snowdrops. Contentment for me is peace of mind, and the only place to find that is inside me.  Busyness makes me weary and anxious, off centre. In order to function I need blank space, time for my complicated cluttered excavations into my rich inner world.

My breast cancer diagnosis is teaching me many lessons. My slowing down has been partly enforced by hormone medication and the aftermath of treatment and trauma, but for the most part it is done with intention. I don't want to get back on the treadmill that my illness so crudely threw me off. I'm building a bubble in which to live. It's transparent, so I can see out and you can see in. It protects me from myself, my old habits, my learned ways of doing things, the story so far. 

Ed Sheeran gets it right in his song, Save Myself 

So before I save someone else, I've got to save myself

And before I blame someone else, I've got to save myself

And before I love someone else, I've got to love myself

  Anita 29/01/2018

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."



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."




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.




#BRiCResilienceTeam

#pathways2resilience