Monday, 31 October 2016

Day 31 #pathways2resilience ~ Review

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

As October draws to a close, we also reach the end of our month long project #pathways2resilience and for our final post we are celebrating our unity when faced with adversity.

Our private group is diverse and our members are extremely supportive of one another. Over the summer this year we held countrywide meet-ups so we could connect in person with the friends we’ve made within the online support group. The meet-ups were a great success and friendships were firmly reinforced.

We feel extremely honoured to have been able to share some amazing stories throughout this month….a mere snapshot of the many strong and spirited members we have and this feature has highlighted the many different ways in which we strive for resilience in the face of breast cancer. 

We started the month with Naz’s story and her vision for paving a pathway of wellbeing towards resilience and cognitive flexibility which resulted in the birth of the centre last year. Following this we had the privilege of sharing the daily stories from our members who are blossoming in creative talents such as photography, writing and art, sporting talents such as cycling and running, those who support charities by campaigning or fundraising, those who shared their innermost thoughts and wisdom and we heard from those who live every day with incurable secondary breast cancer. Each and every post has been published here on Panning for Gold.

We wish to thank those involved in #pathways2resilience and we hope everyone has been captivated by the stories from these remarkable women. We’d also like to thank those who have commented on and shared posts, which all helps to spread the word of the work we are doing at the Research Centre for Building Psychological Resilience in Breast Cancer.




#panningforgold #pathways2resilience

#bcresiliencecentre #breastcancerawareness

Sunday, 30 October 2016

Day 30 #pathways2resilience ~ Tamsin

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

Daring to Disturb the Universe…

In today's post for our month long feature #pathways2resilience, Tamsin shares how meeting Naz, Vicky and the support of women in the group led her to find the courage to submit a blog to HuffPost UK.
~


When Naz asked me to help with administration tasks associated with the Centre for Building Psychological Resilience in Breast Cancer in November last year, I might have said no, because, like anyone, I find there aren’t many spaces in my life, filled as it is with work, being a mum and keeping my post-cancer-body in line. But as it turns out, I’m still not very good at saying no, and maybe that isn’t a bad thing.

I’ve always been a quiet kind of girl, a stage-hand rather than an actor, so I’m still not quite sure what happened at about 3.30 p.m. on Thursday 31st March 2016 when I dared myself to try and write a blog worthy of being featured by the Huffpost UK. Earlier that month, while recovering from surgery, I had spotted a blog by the wonderful Laura Dodsworth hosted by Huffpost UK as part of a month-long project entitled ‘All Women Everywhere.’ Having thoroughly researched a number of on-line blogging guides for Naz so that she could submit a blog highlighting her work, I knew I had to come up with 700 or-so words in an opinion-led style on a topical subject.

In a mere hour, seemingly from nowhere, I wrote ‘The Gift of Fear - Or How Fear Saved My Life.’ This was followed by an agonising 30 minutes of procrastination about whether or not to send it off - Do I really want to do this, I wondered? Is it even good enough? Why would anyone be interested in anything I’ve got to say? How would I feel if the Huffpost UK were to say NO? Ironically, it was this fear which prompted me to hit the send button at around 4.55 p.m., with five minutes left before the project ended. After all, I decided, it would be too great an irony to allow fear to prevent me from daring to submit a blog about fear.

I’ve tried hard to get to a point where I see my experience of cancer as one of many chapters in the book of my life. But the truth is that when I found out I had a BRCA1 mutation, I felt like cancer was not only in the pages of the book of my life, it was in the ink and the spine. You see, every cell in my body is unable to make a protein that inhibits tumour growth of certain cancers and I’ve had a rare, aggressive breast cancer, not once, but twice. Between 2009 and 2012, I was on chemotherapy for over 9 months, had radiotherapy for 6 ½ weeks, and underwent 7 major operations, 3 of which led to me being in HDU, one during chemotherapy. At one point I was so traumatised by my experiences of surgery and post-surgery that I became afraid of sleep, suffering from terrifying lucid dreams, half conscious and unable to move. Outwardly I was positive, and many aspects of my life carried on as normal, but I just didn’t dare to feel my grief, my loss, my pain.

Looking back, I think I became mute as a result the shock of these experiences. So maybe you can understand then what it means, not only to be able to write about aspects of my experience of cancer, but to have my meagre offerings published - I feel as though I have learned to speak again.

I could never have imagined how much the course of my life would be altered by my friendships with Naz, Vicky and the women in our group. I could thank Naz and Vicky for so many things, but what I thank them, and Anita, for most, is for helping me to find the courage to be daring, to be bold and to dare to disturb the universe - just a little.




#panningforgold #pathways2resilience

#bcresiliencecentre #breastcancerawareness

Saturday, 29 October 2016

Day 29 #pathways2resilience ~ Sarah-Jane

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

Today for our month long feature we are delighted to share Sarah-Jane’s story.

~


October, - Breast Cancer Awareness month, the month that seems to symbolise moments of reflection for me. It is nine years since I was diagnosed with Breast Cancer and there are times today, when I look back, that I feel it is unbelievable to think I experienced something so absolutely harrowing; that a tiny lump in my left breast would cause so much heartache and pain: that my contented life was momentarily turned upside down in a split second.

It’s true, no matter how far down the road you may be from your diagnosis, how you wear a continuously radiant smile because you are fortunate to belong to a group known as the survivors, and continue to be one of the lucky ones, you are reminded of all that you went through, but equally of just how far you have come in rebuilding your life. I write that sentence with my fingers and toes crossed and pray this will always be the case. I also find myself taking a moment to think of all those who have not been as lucky as me, those that face a secondary diagnosis and live every day with enormous strength and bravery along with huge uncertainty.

I believe the majority of people faced with such a devastating diagnosis of hearing the petrifying word ‘cancer’ quickly cascade into a lonely, terrifying deep and dark black hole where the heavy clouds prevent any glimmer of light to touch you. Your carry all of your fears on your shoulders and you feel as though they will never be lifted. Then you start on the treadmill with treatment, most commonly surgery, chemotherapy, perhaps radiotherapy. We lose our femininity. For me, initially, it was my breasts, then my hair, then chronic bloating a common side effect of chemo. Every wave of emotion was felt. Then miraculously, almost in what appeared to feel like a few moments the light began to penetrate the darkness -unknown opportunities quickly blinded me. I emerged strong, ironic that you are faced with adversity to realise your inner strength and real potential. I wanted to share my own experience to educate some but also to empower others and inspire those who are about to begin on their own breast cancer journey. That journey is a tough one.

It felt like my breast cancer journey was a long one. Complicated by my previous childhood cancer when I was only sixteen years old. I was diagnosed with Hodgkins Disease or Hodgkins Lymphoma as it more commonly known these days, a cancer of the Lymphatic system which affects the white blood cells. At 16 I faced rigorous chemotherapy followed by pretty horrific radiotherapy which was given to me every day for six weeks. People have asked me frequently how I actually felt facing cancer as a child. The truth is I felt as if my parents protected me from the serious consequences of a life threatening illness and I didn’t fully comprehend such a diagnosis until I was diagnosed at the age of 36 with triple negative breast cancer and a mummy to two young daughters. That’s when I fully comprehended the extent of what cancer was capable of within the body and psychologically and what major impact it would have on my future life. It’s true to say, like many others faced with any kind of personal misfortune, I am determined and there have been many occasions that I have needed to prove this in life. It was my encounter with breast cancer that made me passionate to try and make a small difference to the lives of those facing a diagnosis today.

As soon as I reached the end of my treatment, which incidentally involved a full mastectomy with immediate free tram diep flap reconstruction, followed by 8 sessions of chemotherapy, a preventative second mastectomy again with immediate Igap reconstruction which actually failed and was followed a few months later with a second Igap reconstruction which took a very long 26 hours in surgery for my surgeon to perform, I was adamant that I wanted to go and try to help others as I want their experience to be a positive one. As bizarre as it may sound I felt as though I had been very lucky to have an amazing medical team around me who also had access to ensure that I was given the best care and the latest drugs that were available at the time. A classic scenario of wanting to give something back for the amazing care that I had received.

Research is vitally important to me. We need to improve the quality of life for patients going through treatment so I chose to support an amazing charity called Breast Cancer Now as they specialised in the area of research amongst other things. Not being a runner at all I thought I would compete in the London Marathon to raise much needed funds exactly 12 months from the date of my end of treatment. I learnt then, that the mind is incredibly powerful when pushed to the absolute maximum. How I trained for it will probably remain a complete blur especially as I was a total novice but I did complete it with huge satisfaction that the pain was worth it as I managed to raise over £10,000, and that was the focus that inspired me putting one step in front of the other!! I still don’t know how I actually did it, but I have a little medal that I am extremely proud of that reminds me that my dedication to the cause was definitely all worth it.

So the marathon was me giving something back to research. Then an opportunity came to set up a local support group for the charity Keeping Abreast for the Hertfordshire and Bedfordshire region. Primarily to offer support to ladies considering breast reconstruction following their mastectomies. I absolutely love it, especially meeting new people and helping them through their surgery and beyond. It is something that I am really passionate about as I feel like we are supporting the ladies through a very daunting and difficult time and we all feel within the group that this is rewarding for all of us. We love our fundraising too which allows us to provide patients with a bra voucher after their surgery just so that they can treat themselves to a new bra to try and help them feel special and feminine when they have healed.

My cancer experiences, especially breast cancer has allowed me to grow in ways that would never have been possible previously. I was such a frightened vulnerable patient who required constant reassurance that I really would be ok. Cancer has taught me to be many lessons. I am so grateful to everyone who helped me reach where I am today. I have met some equally inspiring ladies, some are involved in this group as well and it has been so moving to see them come through their ordeal and go on to help others too with such a selfless approach.


I did go on and write my ‘life story’ in my book called Worms on Parachutes, which is my thank you gift to the NHS who have helped me to be where I am today. If you do get an opportunity to read it I know you will love it, as many ladies who have shared their thoughts with me have expressed just how helpful they found reading it.

I hope you enjoy reading this little piece during Breast Cancer Awareness month.


Lots of love

Sarah-Jane Phillips

  


#panningforgold #pathways2resilience

#bcresiliencecentre #breastcancerawareness

Friday, 28 October 2016

Day 28 #pathways2resilience ~ Mandy

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

Life's too short to sweat the small stuff...

Today for our month long project we hear from Mandy who shares how her life has 'become more immediate' since her breast cancer diagnosis.

~

My life has become more immediate since my cancer diagnosis. I have spent all my adult life discussing life and death but experiencing it first- hand makes issues more pertinent. 

Life’s too short to sweat the small stuff and there is so much that could be done to improve people’s lives and to make people more aware of both the limitations of science and the unlimited potential of the human race.

Family and friends are key to a happy life but self-preservation must be developed as if they cannot survive without you, what happens to them if you don’t survive? Time in the sun, soaking up all the vitamin D3 you can manage, has to be planned and enjoyed but going with the flow is the best approach when dealing with other people, especially those who have some power or influence over your life and future.


My best advice – keep breathing deeply and enjoy what you can when you can. It may all change tomorrow but as long as you can see which way is up, celebrate the moment.




#panningforgold #pathways2resilience
#bcresiliencecentre #breastcancerawareness

Thursday, 27 October 2016

Day 27 #pathways2resilience ~ Jenny

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

If you like stunning jewellery you've come to the right place

The adversity that breast cancer brings with it, is not a gift. But like Jenny, what we can do is to grow gifts from it. Here, Jenny, our wonderful ambassador shows how she turns the pain that she has endured to being creative about making stunning jewellery that she enjoys immensely. These gifts, she gives away generously. In fact, in one of our London meetups over lunch, her earrings, necklace, bracelets and rings, she happily gave everyone. We are proud of Jenny, and the enthusiasm she brings to the group is as stunning as her jewellery. 

                                    ~

So Pinktober is upon us again. Personally I prefer to keep my head down because my experience of breast cancer, like just about everyone I know who has also gone through it, is anything but pink. 

I've always had a bit of a 'give it a go' attitude, I suppose that comes from having been a single parent, so when I was diagnosed with primary breast cancer in December 2010 at the age of 48, the only thing I could do, once I'd picked myself up off the floor, was get stuck into the treatment and give it a go.

Lumpectomy, chemotherapy, radiotherapy, Herceptin and hormone therapy was a massive shock to the system, but with the help and support of friends who stepped in and just did stuff, like the parents of my daughters' friends who had my two girls forward sleepovers on chemo day, and my lovely boyfriend who let me stay at his and just brought me drinks in between sleeps, I got through.

But after active treatment has finished, you're still left with the emotional wreckage, and when others just expect you to be back to normal, only people who've been through similar experiences can truly understand. 

Fortunately, my diagnosis is slipping further into my past so the trauma of diagnosis and treatment becomes less “front and centre” in my daily life, but when recently diagnosed I was in contact with other women who had been through, and were going through, the same as me. One of those lovely ladies (Thank you Kim!) wanted to share an activity that she found relaxing and rewarding, so I and three others were taught the basics of making jewellery. It may not be for everybody (the other three enjoyed the morning but didn’t carry on) but after that first taste, I was totally hooked. I admit I was more surprised than anyone as I’d never seen myself as creative and didn’t really wear much jewellery, but I now really enjoy twiddling with beads, wire and semi-precious stones to make something pretty – which I usually give away because I can’t be bothered with the hassle of online selling as my photographic skills aren’t up to much. 

This is a picture of that very first piece that I made (goodness, is it really three years ago?) which I later gave as a present to my son’s girlfriend.





I have found that having an absorbing hobby that I have to concentrate on has provided very welcome stress relief, as it takes my mind off underlying worries and intrusive thoughts. Earrings, anyone?



#pathways2resilience #panningforgold
#breastcancerawareness #bcresiliencecentre

Wednesday, 26 October 2016

Weekly Discussion Summary ~ Seeking Perfection

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Summary of our weekly group discussion ~ 26 October 2016

SEEKING PERFECTION

Our Sunday topic this week was perfectionism: the already strong pressure to be perfect and how it may be intensified following a diagnosis of breast cancer. As always, our lovely ladies identified common themes but also confirmed that everyone's experience is unique.

As women living in today's busy world, the media tells us that we should strive to be perfect mothers, sisters, partners, daughters, friends, even perfect patients. All around us are airbrushed images of beautiful women juggling careers and children, smiling through every kind of adversity. Often after cancer we look much like any other woman on the street, well and glowing. We hide our vulnerability behind our positivity, we don't want to upset anyone by mentioning our big secret. Even those who have secondary breast cancer and face a lifetime of treatment and monitoring report striving to maintain the brave faced smile. Fear and vulnerability take a back seat so that we can appear strong for our families. Thank goodness for groups like ours where we can share our feelings and thoughts!

Having breast cancer may force us to make difficult decisions that scupper our long held dreams: for those who have children, we may feel we can't be good mothers, as we may have to hand over their care to others while we are unwell for example; for some, cancer puts paid to having more children; others may not get to have children at all. Careers get put on hold; some ladies choose to stop work, others just aren't well enough anymore so they have to stop. We feel we fall short, that the life we thought we were going to have is ruined. Physically and mentally it's tiring having cancer, fearing cancer, and many ladies can't do as much as before their illness (but it's unlikely that you would know that: they hide it well.)

There are lots of things we feel we ought to be doing. One is running a marathon, or at least a 5k race for life, as soon as we finish our last radiotherapy session. Some achieved this and did well, others succeeded but exhausted themselves, and some didn't have the energy to get out of bed, much less bake for the biggest coffee morning in the world. However we feel though, we do get up, do our best, smile and get on with being positive, almost every day. And if occasionally we succumb to feeling tired and low, and we take to our sofas or our beds, we feel guilty and weak. Not good enough.

Having breast cancer can teach some valuable lessons too. Many ladies report becoming softer, calmer, more relaxed, more approachable. Many ladies have learned to say No, and to seek out what makes them happy and not live to please others anymore. Many care less about what other people think of them. With messy reconstructions, one boob, lumpy bumpy lopsidedness, many learn to dress for comfort not glamour. Our new normal may surprise or upset our friends and family as we relinquish roles we thought were carved in stone, realising we have more choices than we thought we had. Our inner strength, the resilience we build, starts to shine.

Many report that they have been able to let go of high standards and high expectations in favour of enjoying life. We commonly discard housework! We take pleasure in the simple everyday things like walking in the autumn sunshine, enjoying a coffee with a friend, or reading a book. Perhaps for some, particularly those ladies who are older, breast cancer brings an opportunity to take stock, to decide what's important, and to live life our way.

However our breast cancer affects us, none deny that we are changed. Some feel guilty that they got off lightly with treatment or surgery; some feel they've let themselves and others down; some feel like failures, as if it's somehow their fault. Not only can they not achieve perfection, they feel less than good enough. And that's a subject for another discussion.

#ResilienceDiscussion




Day 26 #pathways2resilience ~ Clover

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

Designing, not Drowning

Meet Clover Lewis.

Do you know how many post-mastectomy brands have appeared in Vogue?

One - Clover Lewis Swimwear.

In its 100-year history the fashionista’s bible has never featured a brand aimed at the post-surgery market until now. Describing the range as “stunning” and saying it “can be worn by all women who desire figure-enhancing swimwear,” Vogue included the “Dive Collection” in the “Making Waves” edit in their celebratory 100 years edition, massively boosting diversity in the fashion industry at the same time.

Post-mastectomy, and conscious of her changed body, Clover was keen to treat herself to practical but flattering high-end swimwear for her diving course. “I wanted a bikini that would make me feel like the beautiful young woman I am” she explains. She searched, but to no avail. So, having previously designed costumes for the Royal Opera House, and not one to be defeated, Ms. Lewis got out her sewing machine and fashioned herself the perfect bikini, before boarding a plane, arriving in Bali, and bagging her Open Water Diving Certificate.

http://www.huffingtonpost.co.uk/.../designing-not...




 #panningforgold #pathways2resilience
#bcresiliencecentre #breastcancerawareness

Tuesday, 25 October 2016

Day 25 #pathways2resilience ~ Bal

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


Here are the colours of my journey.........

In today's post for our month long feature #pathways2resilience, Bal shares how she was diagnosed with breast cancer at a routine medical checkup after her holiday, the challenges of her treatment and the impact on her life, as well as what her family would say.
~


Here are the colours of my journey on Planet ''C'' for the last 10 months :(

After having an amazing holiday in July 2015, a routine medical checkup in August 2015 confirmed my worst nightmare ever....when the consultant uttered those devastating words - "You have stage 3 invasive carcinoma breast cancer!" Floods of tears came tumbling down my face, as my hubby was in a state of silence, shock, horror, call it a million emotions going round in my head. There is no history in my family so why me? life is unfair etc. etc....

“Am I going to die?” was my first reaction. The consultant was lovely and he said 'Certainly not, I promise you are going to be okay'.

My son was only 15 years old, no child should have to endure such a trauma like this. He asked "Mum are you going to die?'' I quickly responded "NO" and that was when I found my inner strength/resilience to fight with every last breath in my body. Without the lovely support of my medical team/family/friends/neighbours/work colleagues, breast cancer mentors, I would not have got through such a long journey. I knew god only tests those that are strong enough to fight.

I had a mastectomy on the 12th September, then lymph node auxiliary clearance 10th October as the pathology results revealed two nodes with tiny spots which had not become active but a second operation was required. Then 12th November, chest port cannula, another operation under local anaesthetic, 13th November I started 8 sessions of chemotherapy, (4 FEC,4 Taxotere).


The last 4 chemotherapy treatments were the worst days my life.....swollen hands and feet, palpitations, constipation, fatigue & above all chemo 7 blood count was very low so I needed two pints of blood transfusion the day after chemo…deep joy!! I couldn't get out of bed for 7 days. My new hobby was sleeping for 18 hours a day!! I could not see the light at the end of the tunnel but perseverance, as Winston Churchill would say, ''If you are going through hell keep going.''

I may not be there yet but I'm closer than I was yesterday.

13th May 2015 I started radiotherapy for 15 sessions daily…a walk in the park as my oncologist commented but it peaked one week after, oh boy the fatigue hit again when I least expected.

When I was going through treatment, I had this goal in mind and trained on my good days and took part in the 10k Race for Life just 3 weeks after my treatment finished.  I feel proud to have raised £1500 for such a worthy cause. I also joined Breast Cancer Care support service, 'Someone like me.'

My outlook on life since 'C' has changed - lots of positives. My son has matured so much since and has passed his GCSEs with flying colours…A* or As in all his subjects. My hubby and I have been married for 25 years (lovely holiday in the paradise island of Mauritius), my sister in law is expecting her first child in February 2017 and my nephew has recently got engaged and is getting married next year. It's been 1 year (September) and my mammogram and scan are all clear, so life is good and I am thankful to be alive.




So as my family would comment:-
Rocky, Bal, Buah
Rocky represents the ups downs of my journey that I endured in the past year.
Bal as I'm known to many friends/colleagues by.
Buah meaning Auntie, what my nieces and nephew call me.

I AM A SURVIVOR!!







Monday, 24 October 2016

Day 24 #pathways2resilience ~ Penny

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

The Cowards Guide to Cancer...

Is bravery essential for survival? What do we do when we can’t feel brave? When we are too weak to feel brave? When our vulnerability takes the better of us, and we have no option but to commit to it. Are we a coward then? Or is bravery not an option on the menu of things to do to survive?

For our month long feature #pathways2resilience, Penny, another wonderful member of our centre, shares her resilience story 'The Coward’s Guide to Cancer' here, and how she made it to go public on The Sun Online, when she did not consider herself brave!

~

A close encounter with a bear while walking with a friend in Canada made me realise just what a coward I am. The bear was approaching us and we were alone. My friend had not seen it. Before setting off on the trail we had taken advice on how to behave should one meet a bear in the wild, but my mind went blank. Instinct took over. So what did I do? I pushed my friend between me and the bear and hid behind her. We survived, and I think we are still friends. We both know I may not be relied upon in moments of crisis.

To me, bravery is that demonstrated by those prepared to dash into a burning building to save others. I see bravery on those 999 style documentaries where firemen and medics put their lives on the line to save a stranger. And yet, from the moment I was diagnosed with cancer I was considered brave. Strangers approached me in cafes, gently touched my arm and remarked on my bravery. What nonsense. Each time I sat in a chemo chair while a nurse fed poison into my veins I felt like the passive recipient of a treatment that sometimes seemed worse than the disease, yet if I wanted to survive this seemed the only option. Hardly a brave a decision. At times I thought, “bring it on, consider me brave”, I’m not immune to the joys of a compliment however ill-deserved. Yet gradually the bravery badge felt like a burden. Once I was labelled and praised for my bravery it seemed there was a heavy expectation on me to cope, to not look ill, to cry only in private, to protect those around me from the realities of a dread disease.



But I did cope. I had no choice. Often I did it through the care of remarkable strangers who became “virtual” friends. I found these people online, in support groups like “Inflammatory Breast Cancer Support UK”, “Building Resilience in Breast Cancer” and “Flat Friends”. These groups are full of women who are not brave, just remarkable. In these closed forums we can rant and rave, share our fears and experiences in a way that we sometimes feel unable to do with our nearest and dearest. I confess to having few people to call in the dead of night complaining of chemo induced constipation and mouth ulcers or who want to hear my steroid fuelled nightmares about dying and being laid to rest in my best dress but bald. Yet online, there was usually someone ready, without judgement, to "listen" and share similar fears and extraordinary body functions. Through the best of intentions, those closest to us often don’t want to hear that we are suffering, that we are scared or, perhaps more significantly, the cancer has changed us. And I realised, that however often I cry, however often I can’t face the changes to my body, however often I mourn the life I feel I lost, like all the other women I am remarkable too.

I was diagnosed with Triple Negative Inflammatory Breast Cancer in 2013. To all intents and purposes I am “doing well”, but I still struggle at times to cope with the after effects of the treatment which include nerve pain from peripheral neuropathy, not to mention the absence of one of my tits. I wish this hadn’t happened to me and yet it has strangely led to some great things.

Whilst going through treatment I was encouraged to keep a diary. For the most part this was pretty dull reading. “Today I felt sick”. “Today my hair fell out”. “Today they lopped off my left tit”. I exaggerate, but you get my drift. Gradually as my hair began to grow, my scars had healed and I tried to resume a “normal” life, my diaries had a bit more to offer as I began to take stock of the emotional impact of the cancer and facing a “new normal”. And I started to blog at www.greatthingsaboutcancer.com . Writing has been therapeutic. The more I shared about the frustrations of life “post treatment” - dating with one tit, buying mastectomy bras, body image -  the more people got in touch with me to share their similar stories. From feeling isolated, I felt connected. I always enjoyed writing but my motivation waxed and waned, but now cancer has given me my writing mojo. I started blogging for The Huffington Post and was interviewed for the Mail and The Sun online – I am no Page 3 babe and so I never imagined my tits (well discussion about my tits) would ever make their way into The Sun.




My marriage failed just before my cancer diagnosis. I’m over 50, single with just one tit. This is not the life I had imagined for myself. Sometimes my future feels bleak. And yet, by opening up about my feelings in public, it has in turn opened up new horizons. These horizons range from the more bizarre, like being an extra in a vibrator advertisement, to those which aid a cause like an invitation next month to attend an All Party reception in Parliament in support of Breast Cancer Now, or being treated to a makeover and wardrobe styling session for a charity video for Macmillan and Clothes Aid or being interviewed for a research project at London Fashion School into how clothes and style impact on recovery in breast cancer. Amongst all the fear, pain and loss, there has been fun. And most of all, throughout it all, apparently I am VERY, VERY BRAVE!!!




#panningforgold #pathways2resilience
#bcresiliencecentre #breastcancerawareness




Sunday, 23 October 2016

Day 23 #pathways2resilience ~ Caroline

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

"we have raised nearly £3,000 for groundbreaking breast cancer research at my old medical school....."

In today's post for our month long feature #pathways2resilience, Caroline, a Consultant Oncologist, describes how her discovery of a level of resilience and strength brought together her family and community.

~

"Last August, I was devastated to be diagnosed with breast cancer - devastated for my young family (I have two little girls then aged 9 and 3) and terrified for myself. As a consultant oncologist, I knew just how cruel this disease can be.

I have had to find a level of resilience and strength I didn't know I had just to get through all the treatment physically, let alone deal with the emotional fall out. But with the help of family, friends and the amazing ladies I have met online through the Building Resilience in Breast Cancer Group and Younger Breast Cancer Network, I am now gently getting back to a life not centred around my illness - I am back at work which was a big concern for me - would I be able to look after cancer patients after being one myself? It's baby steps so far but with the help of this group, I think I'll get there!

My family are getting there too - it was important for us to be pro-active and we have raised nearly £3,000 for groundbreaking breast cancer research at my old medical school in Nottingham - it's brought us closer together and shown us how fabulous our local community is!"







Saturday, 22 October 2016

Day 22 #pathways2resilience ~ Ruth

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


'I graduated from an MA in Victorian studies this year...'

In today's post for our month long feature #pathways2resilience, Ruth shares how her diagnosis of breast cancer in 2004, followed by a recurrence led her to pursue a long-term goal to enrol on an MA in Victorian studies.

~

I was devastated to be diagnosed with breast cancer in 2004 and again with a recurrence in 2008. I truly did not expect to be around for very long after the 2008 recurrence which was in the lymph nodes in my chest, but after surgery, chemotherapy and a year on herceptin I decided to take it one day at a time and see what happened.

I tried very hard to put the cancer to the back of my mind, which was often hard, because the 'black cloud' often threatened to descend (and sometimes succeeded in doing so. At those times, and during the 'scares' that happened several times I found the support of others (usually online but sometimes face to face) was absolutely invaluable.

I changed my job twice during the last 8 years and eventually went part time. I decided to take the plunge on one of my 'bucket list' wishes and enrolled on a MA in Victorian Studies in 2014. I graduated this year and it was the most amazing and fun time (although pretty gruelling and stressful at times too).I've also taken the opportunity to take holidays when I could including a trip to Moscow where my son was at University just a few months after finishing treatment in 2009.

Nearly six years ago my first grandchild arrived, and I feel so grateful to be able to have her in my life. I'm currently feeling well, still on hormone therapy and tablets for bone-thinning, and also have lymphodema in my arm, but I have had some amazing times in the last 8 years. If anyone had told me in 2004 that I'd have done and achieved so much I'd have told them they were mad! Lots of love and luck to anyone starting out on this journey. I wish you all well.





#panningforgold #pathways2resilience
#bcresiliencecentre #breastcancerawareness





Friday, 21 October 2016

Day 21 #pathways2resilience ~ Jan

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

“That scar will remind me that I survived cancer.............I am happy to be alive, scars and all; my body is different, my mind is different, and the future is not as certain as I once thought it was - but I survived!"

Thank you Jan, for sharing your resilience with us for our month long feature #pathways2resilience



~


Breast cancer hit me like an 18 wheeler truck, in the middle of my life, just after the birth of my first grandchild. I was otherwise healthy and happy then it came and knocked me sideways. My reaction to diagnosis was simple, “Right, what do we do now?” and that was my attitude for the rest of my treatment. 

An important moment came the day after my mastectomy, an older lady came into the ward and occupied the bed opposite me, she cried at everything that happened, when the nurse came to measure her for her support socks – she cried, when they came to take her blood pressure – she cried, when someone asked what she wanted to eat the next day…everything led to tears. I tried making conversation, just smiling, anything, but she wasn’t open for any kind of contact. After several bouts of tears and refusing to cooperate with staff, a nurse asked me to try and talk to her because I was so cheerful (I don’t remember being THAT cheerful lol).

I sat on the end of her bed and asked if I could help with anything, she asked me what I’d had done and when. I told her about my surgery and that it was the previous day.  She asked if I’d looked at my scar yet and how I managed to stay so happy when for the rest of my life that scar would remind me I’d had cancer?

Without stopping to think for a second I answered:
“That scar will remind me that I survived cancer”.

Despite some difficult times since then, two more surgeries and the usual side effects of chemotherapy and Tamoxifen, I can honestly say that I am happy to be alive, scars and all; my body is different, my mind is different, and the future is not as certain as I once thought it was - but I survived!

I had this tattoo done after my last surgery...



#panningforgold #pathways2resilience
#bcresiliencecentre #breastcancerawareness

Thursday, 20 October 2016

Day 20 #pathways2resilience ~ Vicky

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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.  



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

Wednesday, 19 October 2016

Day 19 #pathways2resilience ~ Rachel

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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."




#panningforgold #pathways2resilience

#bcresiliencecentre #breastcancerawareness

Tuesday, 18 October 2016

Weekly Discussion Summary ~ Secondary Breast Cancer

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Summary of our weekly group discussion ~ 18 October 2016

SECONDARY/METASTATIC 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

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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: