Weekly Discussion Summary ~ Breast Cancer Awareness Month - what we think and how we feel

#OurBreastCancerTruth

Breast Cancer Awareness Month - what we think and how we feel

In our weekly discussion, we explored our conflicting thoughts and feelings about October (Breast Cancer Awareness Month)

Some of us detest the 'pinkification' of breast cancer and find the emphasis on glamour, feel-good stories, celebrity endorsement - with the obligitatory low-cut, cleavage revealing sparkly dress - deeply upsetting. On the other hand, some of us relish the chance to don our bling and sparkles, and happily buy products from which we feel at least some small contribution will go towards raising funds. We are willing to buy into the fluff and glamour because it might just mean that one woman checks her breasts, it might just save one life, and, this we feel, is worth it. Others, while not whole-heartedly supporting the way breast cancer awareness is packaged, are willing to compromise -  we recognise that a "Tickled Pink" tea-party or dinner is going to be much more appealing than a 'Wear Black and Weep' event afterall.

Our feelings about breast cancer awareness as a topic are much more complex - some of us described how upset we are by feeling constantly ambushed by adverts, programmes and pink products. We don't want to feel bombarded by cancer, or that we can't escape it, especially, but not solely, if we have lost someone close to us, are going through treatment, or we are really struggling physically or psychologically. Others, especially those with secondary breast cancer, feel that breast cancer is our reality and we have no choice but to face it every day. We may also we feel that our physical struggles (as a result of ongoing treatment) are demeaned by the pinkification of breast cancer which unintentionally conveys an image that it is a "light" or "good" cancer to get, or our suffering is trivialised by an over-focus on prevention and those who have "beaten" breast cancer.

Sometimes we want to shout our truths loudly, but sometimes we want to be silent about them. What we really want is for people to know what really we go through, how we really feel, what we really have to cope with - the facts, the truth.

We want people to know what we've learned about breast cancer, about the complexity of this disease, about secondary breast cancer, about the way we are impacted by breast cancer in the long term. And what about our emotions we ask ourselves, why can't we share them? Is it such a bad thing?

Sometimes, we fret about what's ahead in breast cancer awareness month - the fluff, the pink, the ribbons.

If we have the glamour, why can't we still have the honesty? Why can't we have balance? We want to show the mixed emotional roller coasters we go on while at the same time showing the world that we are grateful for a second chance, however long that may be.

It's about the balance, but are we balanced?

We want to be positive but vulnerable. How can we express it?

We want to show what the real meaning of resilience is. We want to show the pressure we are under, the responsibilities we manage in the light of the uncertainties and fragility we endure. Our achievements, despite our fatigue and physical struggles. Our beauty, even though we have our scars. Our perseverance, despite all the questions we face. Our determination, our drive, even if we think that it is not there. Our support and our understanding for one another. Our unity.

We want to speak about resilience and how we can show others what it means and shout out that it does not mean we have to minimise our experiences. Without our darkest moments, we know, there will not be light. Our experiences of breast cancer are not all about the light. They are about the darkness too. They are two sides of the same coin.

Please follow our #MyBreastCancerTruth, our month-long project highlighting the truths of women with primary and secondary breast cancer and practice resilience for #BreastCancerAwarenessMonth

You can read our stories here:
https://bcresiliencecentre.blogspot.com/2018/10/breast-cancer-awareness-month-october_1.html

If you are a woman living in the UK with a breast cancer diagnosis and you would like to join our private group please send us a private message via https://www.facebook.com/resilienceinbreastcancer/

Day 20 #pathways2resilience ~ Vicky

Special Feature Edition: Pathways to Resilience: Embracing our Vulnerability, Celebrating our Resilience

“We all have an unsuspected reserve of strength inside that emerges when life puts us to the test.’, which today is very apt for me.”

Today for #pathways2resilience we are featuring Vicky, one of the Centre’s deputies. Vicky was diagnosed with secondary breast cancer in June 2015, she has two young children, and she is learning to live with the psychological impact this diagnosis brings.

In her feature she talks about the Centre and about her recent venture into the world of politics!

~

I was diagnosed with secondary breast cancer in June 2015 at the age of 40, nine years on from my primary diagnosis. Through the haze caused by the crushing anguish of this diagnosis I found myself venturing back to online breast cancer support groups. Around October last year I stumbled across and joined the fledgling psycho-educational group ‘Building Resilience in Breast Cancer’, the private member group of The Research Centre for Building Psychological Resilience in Breast Cancer, headed up by Professor Naz Derakhshan. By the end of the year I had been recruited by Naz and deputy Tamsin to assist with running the group. We have seen our private support group expand and flourish, we have established our public page and after working together so closely, the three of us are now firm friends for life.

Earlier this year Tamsin and I developed and launched the Centre’s blog, Panning for Gold. The aim of the blog is to provide an inclusive space which represents the many voices of women with a breast cancer diagnosis. I braved writing a couple of blog posts myself around the subject of secondary breast cancer, one of which I wrote a year on from my diagnosis.  

Link to One Year On: http://bcresiliencecentre.blogspot.co.uk/2016/06/one-year-on-vicky.html

In addition to helping out at the Centre, I have recently found myself volunteering with Breast Cancer Care at two events to promote their ‘Secondary. Not Second Rate’ campaign. I attended the Conservative Party Conference in Birmingham, then the following week joined them again at an event at The Houses of Parliament. Being involved in this type of event really highlights the lack of knowledge out there over the difference between primary and secondary breast cancer and because of this secondary breast cancer does not get the coverage and funding it deserves.

People don't die from breast cancer in the breast and local area (Stages I/II/III) however 30% of people diagnosed with primary disease go on to develop secondary breast cancer (Stage IV), where it spreads to distant areas of the body. Around one person every 44 minutes dies from SBC in the UK. It has NO cure and many people don’t know this fact. With access to the best available care and treatment it can in some cases be managed and controlled for some time but still secondary diagnosis sees only 15% surviving 5 years and 10% surviving 10 years.

Upon speaking with Jeremy Hunt, Secretary of State for Health at the Conservative Party Conference, the message we heard from him was that early detection of primary breast cancer is the key to dealing with the disease and while I agreed that this can make all the difference with the outcome for many, I politely voiced that despite my breast cancer being detected very early, my cancer still spread and now I’m living with secondary, incurable breast cancer.

At the party conference in addition to Mr Hunt we met and spoke with cabinet ministers Justine Greening and Damian Green, along with staunch Breast Cancer Care supporter Craig Tracey MP and many other MPs, all of whom were receptive of the discussion, some learned something from us and some were stunned by what they heard.

 

Following on from this, ahead of secondary breast cancer awareness day, I attended the Houses of Parliament with Breast Cancer Care to continue with the campaign and meet with MPs who had agreed to drop in to the event, which was opportunely directly before PMQs.  The MPs were again receptive and came to understand the difficulties we face living with secondary breast cancer.

The ‘Secondary. Not Second Rate’ campaign has a few key points and the main focus at the events was on secondary breast cancer data collection by Hospital Trusts. Breast Cancer Care has discovered that even though it has been mandatory for 3 years, only one third of trusts are recording when people are diagnosed with secondary breast cancer. This means there is no accurate figure of the number of people diagnosed or living with secondary breast cancer, and makes it impossible to plan services.  This crucial information would highlight how effective primary breast cancer treatments are and it would ensure the more efficient delivery of services and treatments to secondary breast cancer patients.

Following the Houses of Parliament event, Jo Churchill MP, raised a question at PMQs about secondary breast cancer data collection. Unfortunately the Prime Minister wasn't prepared for the question and doesn't appear to recognise the difference between primary and secondary cancer.  It was however great to see the subject raised, so Breast Cancer Care will be working hard to keep up the momentum. I am proud to have played a part in this and just hope we can make a difference.

Here’s hoping for a future living better and for longer with secondary breast cancer.

#panningforgold #pathways2resilience

#bcresiliencecentre #breastcancerawareness

Day 19 #pathways2resilience ~ Rachel

Special Feature Edition: Pathways to Resilience: Embracing our Vulnerability, Celebrating our Resilience

“I am still STABLE”….

Today we are delighted to present Rachel, whose fantastic blog ‘Could this be (one of) the greatest days of my life’ we featured back in April. For #pathways2resilience Rachel has shared a post with us from her own page earlier in October delivering good news to her followers: 

“I've had my scan results and I'm delighted to say I am still STABLE. What is this world that I live in where it can be good news and worthy of celebration to hear the news you still have cancer and sorry but it's not any smaller but it's not any bigger either, and it's nowhere new. Well this was my news today and my first thought was hooray. This is the world I will live in for the rest of my life. Stable buys me time, time with my family, time for Fun and laughter and time for the hope for a cure to exist in my lifetime, for me. Thank you to everyone who is there for me. Words can't describe how much support I need and I am truly grateful for the love that is shown to me. Chemo again Monday. Number 24. But I am ready. Bring it on xxxx” 

Today Rachel would also like to mention another group she belongs to where everyone is so wonderfully supportive:

"I'm part of an online group called Flat Friends that supports ladies living without reconstruction after mastectomy. No matter what's going on in our lives you are never alone once you are part of Flat Friends."

Link to Rachel’s blog: http://bcresiliencecentre.blogspot.com/2016/04/could-this-be-one-of-greatest-days-of.html

#panningforgold #pathways2resilience

#bcresiliencecentre #breastcancerawareness

Weekly Discussion Summary ~ Secondary Breast Cancer

Our Sunday discussion this week focused on secondary breast cancer (SBC). In our private group we have members with both primary and secondary diagnoses and it became clear during the discussion that those with secondaries may be reluctant to share for fear of upsetting those with primaries. Getting this out on the table led to a frank and honest sharing of experience and feelings and many primary ladies were reassured by the positivity and resilience demonstrated by our ladies with SBC.

We are shocked at how ignorant most people are about SBC and what it means to get a diagnosis. Also called metastatic breast cancer (mets) it means that the breast cancer has spread to other parts of the body. It can be controlled through treatment but not cured. We would like to see more information provided to primary breast cancer patients, and to the general public, and more prominence given to SBC during the pink awareness campaigns.

Primary BC ladies live with a constant fear of secondary BC. Secondary BC ladies say they experience a different kind of fear, it's focused on keeping the disease at bay, on scans and treatments, and on living life to the full, each and every day. Resilience appears to increase for many ladies with SBC, there's a determination, a fighting spirit, a zest for precious life. The fear of uncertainty becomes channelled into living in the present rather than worrying about tomorrow.

We hope that this discussion has brought us closer together as a community of women living with breast cancer and we thank our SBC ladies for their willingness to share so frankly.

#ResilienceDiscussion

Day 18 #pathways2resilience ~ Nina

Special Feature Edition: Pathways to Resilience: Embracing our Vulnerability, Celebrating our Resilience

Dear Old Nina...

“You will soon realise that things are allowed to be ‘just a bit of fun' and for no more reason than them being a bit of silliness. Remember Nina, not everything is about your cancer and certainly not about dying!”

In today’s post for our month long project we are delighted to feature Nina, who first wrote a fabulous blog for Panning for Gold back in March entitled Ducks & Buddhists about her secondary breast cancer diagnosis. For today’s feature Nina has shared a letter ‘New Nina' wrote to ‘Old Nina’ when her preconceived ideas about hospices were thrown out.

Going home from LOROS today after spending time on the ward; who would have thought that all of my pre-conceived ideas about what hospices do have now been thrown out? This has been a week of love, nurturing, laughter, hope and above all, lessons learned. As such, here is a letter to my old-self…

Dear old Nina,

Maybe you think you know what hospices do and maybe you know what LOROS does; you know that place you think of, up on the hill which you so highly regard but so deeply fear since your diagnosis. You go in the charity shops, play the lottery and with it think of all those lives that have been cut short without consent. You have sympathy but don't really delve any further.

And now your life is threatened and you think of LOROS again but not as a place you are supporting and fundraising for but now, as a place that you need. But that can’t be now, surely?

Things start to get a little bit tough and someone suggests you might like to go to the drop in sessions at LOROS. Right, I’m at that stage am I? You think. But something makes you go, despite you feeling incredibly cautious and fearful.

You'll have initial fears of being roped into things you don't feel happy about, or feeling inadequate as you’re dropped in with a group of older people, which I know is a big worry of yours because as much as you love them you fear them too. But don’t worry Nina, you'll look back and laugh. You will soon realise that things are allowed to be ‘just a bit of fun' and for no more reason than them being a bit of silliness. Remember Nina, not everything is about your cancer and certainly not about dying!

The staff will gradually and gently put you at ease, listen to your fears and let you work it through at your own pace. There will be tears, tetchiness and then most importantly, trust. "Slowly slowly, catchy monkey" our gran used to say didn't she? Well, lighten up I'm saying to you. Let go. No one there has an agenda apart from giving you what you need and whenever you need it. That's it. It's a unique type of care at LOROS and they see you as that unique person too.

Drop-in will turn into weekly day therapy sessions. It's a little more supported than drop-in and a volunteer picks you up because you can't drive too far alone. You get lunch, do crafts, get reflexology, a haircut or a manicure and most importantly talk to the nurses – I’m sure you know by now no stone is left unturned, and all those little niggles that you once had become vague memories as they dig gently away, making phone calls, chasing up support groups, doctors, hospitals even chemists. As I said, no stone.

It’s surprising that by visiting LOROS just one day a week, so much can be taken care of in mind, body and soul.

So time has passed and you will find yourself an inpatient on the ward – which you will fear again - to change over your medications under supervision. You will wander down to the Drop-In Session on a Tuesday, which is where you began your journey here. They’re doing flower arranging and you see your pals Gwynn and Dawn – oh yes, friendships, did I mention you'd make these? You'll sit and laugh and tease and gossip and plan. Then walk back to your room chatting to staff on the way, dropping by the aviary for a different type of chat, this time with the birds, then back to your private room.

You know you thought what hospices were? Well, you'll soon learn that you didn't know what LOROS was about at all. You’ll discover that it's very much for the living we are doing each and every day. It’s for our families and friends. It’s a complex and diverse machine powered by doctors, nurses, administrators, fundraisers, planners, spiritual advisors, therapists, volunteers all who want to and seem to love being here. No complaints, moans and groans; no laters, no can’ts, no couldn'ts.

You'll realise how much it has changed your life for the richer and your families too, as the responsibility for your care is both shared and lifted from them.

So Nina, here's some advice, take your time, give them a chance and soon you will be part of the big family that LOROS clearly is. Not only that, but you'll feel proud of them and for yourself for giving them a chance to prove to you that life is yours still and that they will help you live it. So breathe, let them in and breathe again.

Yours sincerely,

New Nina

#panningforgold #pathways2resilience

#bcresiliencecentre #breastcancerawareness

Link to Nina's previous blog Ducks & Buddhists:

http://bcresiliencecentre.blogspot.co.uk/2016/03/ducks-and-buddhists-nina.html

Day 17 #pathways2resilience ~ Uzma

Special Feature Edition: Pathways to Resilience: Embracing our Vulnerability, Celebrating our Resilience

Don’t Ask Me To ‘Get Over’ My History With Breast Cancer

In today's post for our month long feature #pathways2resilience, we are delighted and honoured to share Uzma Yunus' blog post about the challenges of living with cancer and its effects. Uzma is a mother, physician and psychiatrist whose writing resonates across the world:

"Many survivors end up having clinical depression, anxiety and even post-traumatic stress disorder. The battle with cancer continues for a survivor despite cancer being gone from their bodies. The fear of cancer lingers over most survivors and then about thirty percent like me have to deal with recurrence and start of the treatments all over again. For us with metastatic breast cancer, it is never over at all. Our fears just get bigger and scarier."

Link to blog:

http://www.huffingtonpost.com/entry/breast-cancer-dont-ask-us-to-get-over-it_us_57f18712e4b07f20daa10e51

#panningforgold #pathways2resilience

#bcresiliencecentre #breastcancerawareness

Day 16 #pathways2resilience ~ Jan

From Fear to Resilience - Living with Breast Cancer and its Effects ~ Jan

Learning to live with Metastatic Breast Cancer...

That elated feeling filled with excitement, when you can’t wait to re-build your ‘life’ after breast cancer treatment. It doesn’t last long for some, like Jan, whose cancer metastasised in a course of a year after she finished chemotherapy. Misdiagnosed for a cyst, she insisted on further scans to sadly reveal that her primary breast cancer was now in her spine, liver, lungs and brain. Her lovely family blessing her with support, but the loneliness singing loud. A death sentence now has left her with two choices: to give up or to continue being bold, beautiful, and live life to the full, and fund raise for her beautiful family so that they would not die of cancer.

Jan has chosen to be resilient and versatile, in the dark cloud of adversity that can cover her thoughts, her heart and her vision. We are delighted that Jan has submitted a new blog, 'Learning to live with Metastatic Breast Cancer' for our month long feature #pathways2resilience

According to what she describes, acceptance in the face of uncertainty helps her be resilient, flexible, and diverse.
So proud to share Jan’s story with you. She is an icon of resilience and the soul and heart of our group.

Well where do I start? I suppose at the beginning…….

From the age of 45 I was backwards and forwards to doctors with lumps in my breasts, every time I went, I was referred to breast clinic who did all necessary tests - fybrostic breast, small cysts. They would drain cysts and send me home.

I had this one lump in my left breast that never really went. I used to lie awake worrying about it. I had only had it checked out in November 2014 and was told it was a cyst. Come February 2015, it was still there so I decided I wanted the lump cut out so went back to the breast clinic again.

I had arranged to meet my sister after clinic to go for lunch and make a day out with our husbands...little did I know what devastating news I would get that would change my life forever.

I remember the doctor doing the scan and telling me “Mrs Syers this is not a cyst”. "Of course it is. I only had it checked November." " I'm really sorry," she said. OMG. I thought I was dreaming, stuck in a nightmare and I would wake up... I felt like I was looking over me and it was someone else ... "Are you saying it’s cancer?" I said.  "Well, we will know more after mammogram but yes it's a big possibility.” Omg, OMG, omg. In the next 10 minutes everything was a blur. I planned my funeral, what people would say about me. I was physically shaking. My husband and sister were crying. I told them I'll be okay. From then on it was different tests, from one room to another, to one doctor to another. After all tests, I was given appointment for the week after. That was the hardest and longest week ever. I never slept or ate. Dr Google was huge part of my life, made me feel worse ...

Results day ........."Well Mrs Syers you have what we call triple negative breast cancer. You won't be needing any of them expensive nasty drugs when treatment is finished." Wow! I looked at my husband and we both hugged. “That's really good news ...” How wrong can one be? Dr Google told me all about TNBC.

Only 5/10% of Breast cancer is TNBC. It is the most aggressive breast cancer. The survival rate is rubbish, chances of it returning in the first 5 years is very high.

So my journey begins - surgery lumpectomy and sentinel lymph node which means only lymph node near cancer is taken. Week later went for results - really good news clear margins and no sign of cancer in lymph nodes. Yayyyyyy! Some good news! 

My chemo started EC /paclitaxel.

Wow what a journey that was - from being a lively, high living woman to becoming a bald ‘sick’ all-the-time-no-eye-lashes-freak. Well that's how I felt. I spent so much time crying and thinking the worst. Dr Google became a huge part of my life. I joined all the forums not realising that this was making my anxiety 100 times worse.

I remember my back hurting in the middle of the night like my skin was just so sore to touch. I got up and looked in the mirror and saw a mole. I thought, OMG I've got skin cancer. So at 3am in the morning, I'm taking pictures of my mole (very difficult as was on my back) then on to Dr Google looking at pics to see if my mole was cancerous. Well in my head, you have guessed it - I had skin cancer. I spent the night on the couch, crying, my stomach in knots feeling sick and lonely. How mad is that no one really understands unless you have cancer ... Loneliness is a huge part of having cancer. A few days later the pain went and I got over the mole being cancerous. This happened lots through my chemo. My mind was always working overtime. I can't begin to tell you how many places the cancer had spread to, such a depressing time. My poor family. I had them all drove mad. I really don't know how they coped with me. But they did and I'm blessed to have such a fab support network – a wonderful husband who never moans, children who love me and friends in abundance. Without them all I wouldn't be here today.

Being self-employed, I had to work through chemo which I think helped me took my mind of my ailments.

Yayyyyyy chemo finishes. I get to ring the bell - what a fab feeling that was. It’s all over. Only radiotherapy now - 28 sessions. This will be a walk in the park to chemo. Well I got that wrong. I really struggled, everyday lying on that bed exposed from the waist upwards. Different nurse every day, young students, male too, just walking in like I was just a piece of meat. Lying on a slab, my arm aching as I had to hold it above my head, my skin burnt terrible big brown patches. The tiredness was unreal. The loneliness again. I felt so alone.

This one day I was in radiotherapy, just leaving, and I bumped into a customer of mine who had TNBC. Her treatment had finished 8 months ago. I thought ‘what's she doing here?’ We sat and had a coffee and I couldn't believe what she told me. The cancer was back - it was in her lungs and chest wall. I was devastated for her, life was so unfair, 8 months that's no time. It brought it all home that this could be me soon. I cried all the way home. I decided no matter what, that I was going to be there for her, friends told me to step back, that she would bring me down. I thought OMG, No! That could be me one day, and the thought of being deserted because I had metastatic breast cancer. This is when you need support more than ever. So I was going to be there for her no matter how hard it got.

Well, all treatment was over. I should have been happy but I wasn't and I couldn't understand why. I actually felt worse and hit rock bottom. I felt deserted - all the care I had had was gone and I was on my own. I thought I can't carry on like this. I need to get some help.  There is help there, you just have to ask. I threw myself back into work and tried to get my old life back. Very hard, as you still are suffering side effects from the vile chemo which can go on for years.

Well, here I am cancer free. Great! At Christmas hair had started growing back. Booked Tenerife for January. 18 of us, all family went. My dad subsidised it for us all as we had had such a tough year. My dad is also terminal with prostate cancer. So the holiday was to make memories and it sure did. We had the best time ever.

I started getting pains in my back when I returned from holiday but I just put it down to chemo and the after affects from it all.

The pain just got worse, so I pushed for a scan, but the surgeon opted for bone scan which came back clear. Tried to send me home and get on with my life but when you have pain that’s all you can think about. So once again, I pushed and pushed for scan. I felt like a hypochondriac, middering for scans but I'm so glad I did. The results were not what I wanted to hear - 2 tumours on my spine. From then on it was test after test My results came back, not good news. Mets - liver, bone, lungs and brain.

I was devastated. I had just been given a death sentence, omg I was really going to die of cancer ....

I was to have chemo again but I'd do anything to stay alive longer. Family were devastated lots of crying ...

As time went on chemo started, and so did sickness to the point that I was given a driver with sickness meds and pain killers. This helped loads. I felt rotten. I am struggling this time with chemo my bloods are never right. I've had a blood transfusion which I felt great after as I was so tired sleeping all day.

This time round having metastatic breast cancer I find I'm coping better than when I was first diagnosed ... I don't know whether it's acceptance I've got it and there's nothing I can do but live with it. I can't change it. Wish I could it is what it is and it's now part of me till I die, sad to say. I'm doing my best. I have terrible days where the big black cloud comes and I can spend the whole day crying. I try not to think about dying and concentrate on living. Which is hard sometimes when my body is tired and achy all the time. My face is puffy - I call it steroid face, the way I look affects me as I always take pride in my appearance, it's just harder now to get make up right. I just spend longer on it - lol. I also sleep so much, one minute I'm full of life the next doesn't matter where I am. I need to sleep. And sleep I do, sometimes all day.

I am trying to do nice things and make memories with my family. I try to talk with them about me dying but they don't want to know, so it falls on deaf ears. I suppose it's understandable - who wants to talk about their mum dying? I'm writing letters to them all, hopefully keep them out of trouble - I'll be watching them. Now I'm upset I don't want ever to leave them.

Well it takes us today were am I now. I'm happy, believe it or not cancer is not going to destroy me. It’s taken my health, my independence [driving] I can no longer drive and my car is a massive part of my life. But we have lots of drivers so they all do their bit, mostly husband he's amazing. I'm so lucky there.

Life is for living and I intend to live it to the full when I can, enjoy my family and friends who are a very important part of my life.

I will keep on with my fundraising and hopefully leave my legacy that my children and grandchildren won't die of cancer.

I am strong, brave, beautiful. Just like all my fellow pink ladies. I have to believe this to go on xxxxx

#pathways2resilience #bcresiliencecentre
#panningforgold #breastcancerawareness

Day 15 #pathways2resilience ~ Amanda

Special Feature Edition: Pathways to Resilience: Embracing our Vulnerability, Celebrating our Resilience

'My dining room became my art room. And I had started to fill the gaping hole that cancer had ripped into my life.'

We were thrilled to share Mad Little Artist's work earlier this year. She's an amazingly talented artist and we were honoured that she agreed to appear as our very first art feature in Panning for Gold.

In her blog post, Amanda shares how she taught herself to create art following a diagnosis of secondary breast cancer.

Do take a moment to enjoy Amanda's new artwork below and read Amanda's story here: http://bcresiliencecentre.blogspot.co.uk/2016/03/i-am-now-an-artist-with-cancer-amanda-hayler.html

Find more of Amanda's work at:
FaceBook https://www.facebook.com/madlittleartist/

Instagram https://www.instagram.com/mad_little_artist/

#panningforgold #pathways2resilience

#bcresiliencecentre #breastcancerawareness

Day 14 #pathways2resilience ~ Janet

Day 14 #pathways2resilience ~ Janet

Special Feature Edition: Pathways to Resilience: Embracing our Vulnerability, Celebrating our Resilience

Not one, not two, and not three, but four; Multiple recurrence and breast cancer metastasis: And Cancer, Yes, I’m still standing.

Around 30% of women with a primary diagnosis of breast cancer go on to develop metastatic breast cancer. You would think that the treatment first round would have killed the nasty cancer cells, once and for all. But no, they can hide, and raise their ugly heads, not once, but multiple times, after every treatment, and won’t give up, until they cripple you. Metastatic breast cancer is incurable, and not talked about, yet its reality is very much alive. Thousands of women, like Janet, continue to live prosperous lives, and as such should not be written off, despite the ignorance they receive.

Read Janet’s most moving story. Your heart will go out to her, not JUST because of what she has endured over and over again, but how she has risen from it, not once, but multiple times.

Hi, I'm Janet, a 65 year old wife, mum of four and grandmother of eight, one of whom is a heaven grandchild. One of my daughters was born with a rare congenital heart defect therefore I was also her carer for 42 years until we lost her last year.

My breast cancer "journey" began in 2010 when following a routine mammogram I was diagnosed with DCIS middle grade, left breast, no lymph node involvement. I had two lumpectomies as the first didn't have clearance, and 15 rounds of radiotherapy. Then:

2012: recurrence...invasive ductal carcinoma, grade II
2013: small stroke
2014: recurrence…invasive ductal carcinoma, grade III
2015: stage IV/secondary/metastatic breast cancer in bones 2015: death of my daughter
2016: further spread to left lung and left axilla lymph nodes, HER2 neg, ER+ PR-

Whilst feeling very low one day and feeling very sorry for myself I decided to write to the beast!!! Here's my letter I would like to share with you.

Dear Cancer,

You invaded my body for the first time in 2010 and tricked me into believing that it would just be my one and only brush with breast cancer as it was DCIS grade II, no lymph node involvement, so no chemotherapy, just radiotherapy and 2 lumpectomies. I recovered well, returned to work, and continued with my life, never believing for one moment you would ever return.

It's 2012 and the night before my yearly scheduled mammogram, so I thought I'd have a quick check and to my horror I had a lump, I felt my face burn, my heart went into my mouth, I couldn't swallow, I felt sheer terror, it was on the scar line. Next morning I had my mammogram and told them about the lump, so I had to go directly for a biopsy and ultrasound, but I knew you were back, you had crept up on me without any warning. You put me through hell, this time it was grade II invasive ductal carcinoma and this time you robbed me of my womanhood, my self-esteem, my image and self-confidence. I lost my left breast and couldn't even have a reconstruction due to complications. You introduced me to paralysing fear, panic attacks, and turned me into a crumbling negative shadow of myself, suffering side effects of the wretched hormone medication. I had to leave my job and my whole world collapsed around me. I still had to nurse and care for my sick daughter and I think that was what gave me the strength and determination to pick myself up and carry on and fight you, you weren't going to have me!!!

In 2013 I had a small stroke, thankfully I recovered fully, and guess I can't blame you for that but I would if I could.

Well peace reigned for a while and I had amazing counselling that helped me beat you again. It's June 2014, still suffering from image problems and my darling husband used to check my breastless chest area, as I still couldn't bear to look at myself, or touch my flat ugly chest. I saw his face go pale and his eyes fill with tears, he said "oh no, not again, this is so wrong, so unfair, there's a lump”. You evil beast, you just couldn't leave me alone could you? Back to hospital for a barrage of tests, this time further recurrence grade III. Well I was so angry, I didn't even cry and I stayed awake through the surgery and watched them cut you out to see you gone. There were clear margins and I was to continue on hormone medication and carry on. You were NOT going to get me.

It's 2015 now and my daughter is now so sick and she was sadly taken from me peacefully in April at the age of 42, in my arms, at home as she wished surrounded by her family. Then I shouted out loud at you, "OK are you finished with me now? How much more can a person cope with? Now go away and leave me alone".

I tried to pick up the pieces but it was too hard and sunk into deep depression. During this time I felt very unwell and had terrible back pain, which doctors attributed to stress and grief. In October I visited my hospital for another reason and spoke with my Macmillan nurse and asked if I could have a scan to put my mind at rest. The nuclear scan was done and it was first thought to be degeneration…getting old, I laughed.

I then got the call “I'm so sorry you have secondary metastatic breast cancer in your bones”. You broke our hearts cancer. I've never seen my poor husband cry so much, “It's not fair, why you again?” he said. We are numb, incurable, incurable, incurable, that was all we could hear. I would be planning my funeral, doing my Will, sorting out all my affairs. You did this to me cancer, you had won!!! Well NO, to hell with you, I've got cancer, but you haven't got me…not yet. I'm on Denosumab (bone strengthening) injections, exemestane hormone therapy, adcal supplements and pain medication and so far bone mets are stable mable. You also took me away from my primary friends, nurses and support network in a bright sunny waiting area upstairs, instead to be moved down to lower ground floor away from the potential survivors, pink ribbons, lots of information and masses of support.

Nowhere in the sunny department is there any information or literature about secondaries or recurrences, it's as if we have moved over to the dark side, hidden away, we are the failures, we didn't get remission or a cure, we are incurable, we might frighten the other ladies as they don't want to think about the reality that this could happen to them. But it can and does to anyone, cancer you just don't care, you have no conscience and take no prisoners, rich, poor, famous, anyone. BUT cancer we will make people aware of you, we will be counted by the hospitals and authorities, we may not win the war but we will win as many battles as we can. We will fight back. I know I will lose to you one day but not without a fight.

I have an amazing team looking after me now which includes my Secondary Breast Cancer Nurse Specialist, Tracy Acock. Not only does Tracy greatly help me with my care, she also fights for awareness for all those living with secondary breast cancer. I just wish we were in the sunshine as well as it can be an achingly lonely place to be. You have been with me for 6 years and 7 months so far and as wonderful as people are to us they can tire of you, evil cancer. You wear people out and we have to put our lippy on and smile and say "I'm fine"…if only.

Well 2016 here we go again, it's in my left lung and axilla lymph node, albeit small. I refused to cry when they told me, I refuse to give in to you, yes I have days I cry, cry a lot, days I feel low, days of terrible pain, mood swings, but as far as I'm concerned you can keep snapping at my heels but I'll just run faster, not that I can run anymore…OK walk faster.

Cancer I hate you, I detest you, you are a silent monster who has invaded my body, my life and my world. I don't take you for granted, you are always there sitting on my shoulder but you ain't got me yet!!!!

Janet

#panningforgold #pathways2resilience

#bcresiliencecentre #breastcancerawareness

Day 13 #pathways2resilience ~ Secondary/Metastatic Awareness

Special Feature Edition: Pathways to Resilience: Embracing our Vulnerability, Celebrating our Resilience

Are You Ready to Start Talking About Secondary Breast Cancer?

Today, October 13th, is Secondary Breast Cancer Awareness Day, one solitary day out of a month-long Pinktober - it’s the not-so-pink lining which we women with primary breast cancer can hardly bear to face.

Here in the UK around 12,000 women die as a result of secondary breast cancer every year. These women are mothers, sisters, daughters, friends and partners.

Around 30% of women with primary breast cancer go on to develop secondary breast cancer - breast cancer which has spread to other parts of the body through the lymphatic or blood system. You might hear it described as ‘advanced breast cancer’, ‘metastatic’, or stage 4 breast cancer. You might also hear about so-and-so who had breast cancer and then developed liver cancer. This is inaccurate - breast cancer that has spread to the liver is not the same as liver cancer.

At the Research Centre for Building Psychological Resilience, we hear from our friends living with secondary breast cancer about how isolating and marginalised they feel in the breast cancer community and over the next few days, we'll be sharing some of their experiences highlighting the way in which they continue living rich and meaningful lives.

We desperately need to know why it is that some women find out that their cancer has returned, despite extensive treatment, despite having been told they were ‘all clear. If we can be brave, and stop hiding from our fears, we can start talking. If we can start talking, not only can we support one another, we can advocate, and we can press for better and more effective treatments.

We will not be featuring any one person today for our #pathways2resilience project, instead we wish to share a blog by our deputies, Tamsin and Vicky, published earlier this year on HuffPost UK. We dedicate this post to those who have died from secondary breast cancer and the thousands who continue to live with the worry and uncertainty of their condition every single day. #DontIgnoreStageIV

Please read the blog ‘We Need to Talk about Secondary Breast Cancer’ here: http://m.huffpost.com/uk/entry/10247000?utm_hp_ref=uk-women

You can also find further information and support below.

Secondary Breast Cancer Charities:  
http://www.secondhope.co.uk/

http://www.secondary1st.org.uk/

Breast Cancer Care:

#NotSecondRate campaign

https://www.breastcancercare.org.uk/secondary

#panningforgold #pathways2resilience

#bcresiliencecentre #breastcancerawareness

#SBCAD #DontIgnoreStageIV

One Year On ~ Vicky

Earlier I came across this quote, “We all have an unsuspected reserve of strength inside that emerges when life puts us to the test.”, which today is very apt for me.

It’s hard to believe that it’s days away from the 10th anniversary of my primary breast cancer diagnosis at the age of 31.  A small, low grade cancer with no lymph node or blood vessel involvement and with an excellent prognosis.  My Oncologist suggested dealing with it by surgery alone and agreed for me to go ahead and have the family we had been planning (I’d experienced a miscarriage only 4 months before). He told me in the nicest possible way to go away and to never darken the doorstep of Oncology again! So off I went, welcomed my two children, gave a nod of acknowledgement to the 5 year cancer-free milestone as it passed by, got married, next stop 10 years which seemed to be in my grasp until a new bomb dropped.

One year ago today I climbed aboard a roller coaster and was told that I wasn’t allowed to get off.  I can still see that day clearly, extensive spread of breast cancer into the lymph node and bones, treatable but incurable. My world crumbled around me. I struggled to hear what the doctor was saying, all I heard was screaming in my head.  My first words after what seemed a lifetime: "My children are only 6 and 5, I need to be here for them”.

So here we are 366 days on, a year of ups and downs, but life does move forward. There are times when I forget for a few hours, feel normal even, then other times when I cannot shake off the waves of grief and anxiety surrounding what is facing us. It’s a bittersweet moment, because of course being here is cause for celebration, but there’s sadness too as it’s an anniversary which brings our sense of time into sharp focus. Our mind starts to be drawn to the future as well as the past.  

Over the year I ventured back to support groups, made new friends and met some amazing women sadly in the same boat. After joining the psycho-educational group belonging to The Research Centre for Building Psychological Resilience in Breast Cancer, which brings both primary and secondary women together, I was recruited by Professor Naz Derakshan to assist running the Centre along with Tamsin Sargeant. The work we have done together has seen us create this blog ‘Panning for Gold’, as a platform for women with a breast cancer diagnosis to share their stories and showcase their talents.  My first venture into blogging was here, titled ‘Stage IV and beyond…, and since then I have co-written two blogs with Tamsin for the HuffPost UK.

Secondary breast cancer can be an isolating condition as it is so widely misunderstood. It cannot be cured, so the treatment for it never ends and both this and the cancer cause physical side effects. The psychological impact of living with the condition can be crushing.  Thankfully, the online groups are supportive, caring places, somewhere to go where other women understand, where we can share good and bad news and also where there is a mine of information. Sadly over this year I have seen too many women die from this relentless disease, all at different stages of life, many young women with children and those who were denied that chance.  This has to stop, but we don’t have the answers.

                                                                         

So looking back what advice would I give myself upon diagnosis.  Initially I would say it will seem like a living nightmare but gradually you will find a new normal, so it is important to carry on with those tasks which allow you to connect with normal life.  Give yourself time to adjust as your head will be full of questions (a lot of which can’t be answered) and you will feel every single emotion…probably all at the same time and sometimes at inconvenient times. Acknowledge these different emotions and face your fears, otherwise they will rear up and strike when you’re least expecting it. But most importantly, keep the HOPE.





Blogs:

Stage IV and beyond... 
http://bcresiliencecentre.blogspot.co.uk/2016/02/stage-iv-and-beyond-vicky.html

Panning for Gold: Stories of Resilience after Breast Cancer  
http://www.huffingtonpost.co.uk/tamsin-sargeant/stories-of-resilience-after-breast-cancer_b_9997488.html

We Need to Talk about Secondary Breast Cancer
http://www.huffingtonpost.co.uk/tamsin-sargeant/secondary-breast-cancer_b_10247000.html

We Need to Talk about Secondary Breast Cancer ~ HuffPost Blog

What do Jo Malone, Cath Kidston, Maggie Smith, Olivia Newton-John, Jenni Murray and Kylie Minogue have in common? 

They have all been diagnosed with primary breast cancer.

We talk about ‘breast cancer’ as if it is one disease. It isn’t. There are several types of breast cancer which grow in different parts of the breast and at different rates. Some of us will be given chemotherapy, some of us won’t. Some women have mastectomies, others have lumpectomies. Many - but not all us - have radiotherapy. I felt a fraud when I didn’t have a mastectomy for a rare, aggressive breast cancer - but at least I got to keep my breast (someone really did say that by the way).

Whatever our treatment, what really matters to the 57,000 or so people diagnosed with breast cancer in the UK is that we don’t have, or develop, secondary breast cancer. Unlike primary breast cancer, which hasn’t spread beyond the breast or glands under the arm, secondary breast cancer refers to breast cancer which has spread to other parts of the body through the lymphatic or blood system. You might hear it described as ‘advanced breast cancer’, ‘metastatic’, or stage 4 breast cancer. You might also hear about so-and-so who had breast cancer and then developed liver cancer. This is inaccurate - breast cancer that has spread to the liver is not the same as liver cancer.

Do you want the good news, or the bad news?

The good news is that secondary breast cancer can be treated. The bad news is that it can’t be cured. Treatment aims to slow down the spread of disease, to relieve symptoms and give the best possible quality of life, for as long as possible.

Once the initial shock of a cancer diagnosis has receded, for most of us, the gruelling treatments, disfiguring surgery and psychological effects seem like a small price to pay for our lives. The end of ‘active’ treatment (chemotherapy and/or surgery and/or radiation) feels a bit like graduation - we get our big send-off and party. Everyone loves us because we took on cancer, because by being brave and positive we ‘beat’ cancer.

Of course we want to finish our treatment with optimism and celebrate being cancer free. If we are lucky, we pass the first year with a clear scan, then after the second we begin hoping we’ll reach the five and ten year milestones. How much attention do we give to secondary breast cancer? It’s easier to return to denial - this is our way of ‘moving on’. We wear our positivity as though it is a talisman which wards off cancer, as if it’s a well-established fact that by thinking about cancer we might activate some tiny cell into action, putting our lives in peril. We try not to think about cancer, we try to forget.  

Then we get a niggle, a pain, a scan. That old friend, Fear, knocks on the door again. Are we quite as safe as we think we are?

As a woman diagnosed with breast cancer twice, I get a knot in my stomach just typing the words, ‘secondary breast cancer.’ I admit that I’m haunted by the possibility of cancer returning. It’s the sun and moon of all my fears - as inescapable as the day and night, yet unspoken.

Around 30% of women go on to develop secondary breast cancer - these women are mothers, sisters, daughters, friends and partners. It’s the not-so-pink lining which we women with primary breast cancer can hardly bear to face. But what happens when our friends are diagnosed with secondary breast cancer?

I was diagnosed with secondary breast cancer in 2015, 9 years after having been given the 'all clear.' I see women extremely saddened when the friends they have made throughout their initial treatments or through support groups are diagnosed with secondary breast cancer. Though they continue to offer support, for many, this understandably means their own anxieties surface and they begin questioning their own mortality again. Having been there myself, I know this can be hard, especially when you are gaining a sense of moving on. But, this reaction can make it difficult for those of us with secondaries to feel that we belong in the general breast cancer community where the focal discussion inclines towards treatment for primary cancer and its aftermath. The sense of maintaining a positive attitude to ‘beat’ it, can be a challenging theme for those who haven’t been so ‘fortunate’ to keep it at bay. This fear which secondaries sparks in others means we find solace in groups specifically for secondary breast cancer but this then means the whole community doesn’t really talk about it.

~ Vicky

Somewhere along the way, I’ve realised I need to face my survivor’s guilt, sadness and the fear that I too might develop secondary breast cancer. People think that positive-thinking 'beats' cancer. It doesn’t. A cure will only be found by better understanding what makes our cells grow uncontrollably and invade distant organs. We desperately need science to find out why it is that some women find out that their cancer has returned, despite extensive treatment, despite having been told they were ‘all clear.’ We can only do this if we stop hiding and start talking about secondary breast cancer. The more we talk, the more likely it is that we can support one another and the more likely it is that we can press for better and more effective treatments.   "How does breast cancer do that? How do cells escape from an original tumor and nest somewhere in the body, eluding all treatments thrown at the disease and mysteriously "wake up" and start moving around the body again fifteen years later? What gives them the ability to hide? What triggers their activation again? What makes them so resistant to treatments? Why can't they be stopped? How do we know who has had breakaway cells versus those who haven't? We don't know. Nor do we even know the exact number of people with early stage breast cancer who go on to develop secondary breast cancer".

I dedicate this blog to Vicky, Amanda, Shelly, Rachel, Uzma and anyone living with a recurrence or secondary breast cancer. Even though you won’t recognise their names, these women are no less worthy of our attention and celebration.

Tamsin Sargeant, with vital input from Vicky Wilkes

This blog was published on HuffPost UK 'The Blog' 3rd June 2016

Link: http://www.huffingtonpost.co.uk/tamsin-sargeant/secondary-breast-cancer_b_10247000.html?utm_hp_ref=uk-women