What a cognitive psychologist learned about fear and resilience when she was diagnosed with breast cancer. ~ Naz ~ HuffPost Blog

We are absolutely thrilled and delighted that our very own, and utterly brilliant Naz has had her blog 'what a cognitive psychologist learned about fear and resilience when she was diagnosed with breast cancer' published as part of HuffPost UK's month long project, All Women Everywhere:

"Yes, we are scarred but the scars do not define us. The scars signal our gratitude and grit, and the fears that mark what matters to us. Resilience helps us listen to our fears. So, how can we learn to be resilient, I ask myself".

We are so, so proud of Naz and the small role we play in helping raise awareness of the psychological challenges we all face following a breast cancer diagnosis, as well as how we can support one another to increase our psychological resilience. Tamsin and Vicky.

All Women Everywhere runs through March providing a platform to reflect the diverse mix of female experience and voices in Britain today.  

Here is the link to Naz’s HuffPost UK blog post:
http://www.huffingtonpost.co.uk/nazanin-derakhshan/breast-cancer_b_9516258.html

  

I am now an Artist with Cancer ~ Amanda Hayler

Art has become a particularly important part of my life since my diagnosis of metastatic breast cancer in January 2012. Indeed, I really believe it has kept me sane during the worst days of my illness so far. I love this quote by Thomas Merton "Art enables us to find ourselves and lose ourselves at the same time". It really sums up what art does for me.

When I was diagnosed the first time with breast cancer in 2003, I was 38 years old, working in the education sector and was able to fit work around my treatment, as well as work at home. Work kept me focused and helped distract me from the misery of my situation. However, even after treatment had ended, I never really felt safe again. I kept myself busy and the fear diminished as time went on, but it still lurked in the background. 

Roll on nine years, and the cancer had not only come back, but it had spread to my lungs. I was devastated but not surprised. I knew what it meant. I was on borrowed time and I had to make some large adjustments to my life. One of these was to abandon the plan to become a professional photographer (at one point I almost threw all my camera gear in the bin!). The first year of living of incurable cancer was difficult. Not only was I on treatment which affected me physically, but I also struggled with my feelings of inadequacy, frustration, anger and guilt. I tried doing photography "just for me" by doing regular trips out and giving myself projects to do, but it increasingly got too much physically.

I had a huge hole in my life I needed to fill. I needed something

that would give me some self-worth and allow me to express myself, and not cause too much exertion on my health. It was then I turned to art. I'd always loved doing art, but it was always secondary to other things in my life. Now I had the chance to immerse myself in it and I did. I have no formal training in art (apart from art at school, and then I never completed the A level course). I had been keeping a diary of my side effects from the drugs I was on, but was wanting something that could visually address my emotions. 

I started doing art journaling, which enabled me to create pages of words, colours, and shapes from layers and layers of collage, paint and pen; the focus very much being on the personal and the process and not the end result. I watched YouTube videos, I bought books, I took online courses, and crucially, I was doing art every day. I began to doodle in the hospital waiting room. I started making little collages on canvases and cards that I gave to family and friends. I started to experiment with watercolour and pen. I started doing art abandonments (creating bits of art that are left in public places for people to find and keep). I even started to sell pieces. My dining room became my art room. And I had started to fill that gaping hole that cancer had ripped into my life. Doing art makes absolutely no difference to my prognosis...I will certainly die from my cancer...but doing art certainly makes my remaining life much more fulfilling.

FaceBook https://www.facebook.com/madlittleartist/

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

Operation Big Pants ~ Andrea

Welcome to my ‘Big  Pants’ blog. Perhaps I should start with why it’s called that.

I work with an incredible bunch of people who gave me the nickname of ‘golden balls’. Apparently I earned that for not shying away from difficult issues, challenging unfairness and trying to do the right thing. I was the one  who would place the ‘elephant in the room’ firmly on the table. On a number of occasions my status was elevated to ‘diamond encrusted platinum balls’ – how proud I was – quite an accolade.

In order to be able to carry these so called balls around with me I would joke that I was wearing big pants. One of my favourite sayings was that I loved a challenge. Little did I know the challenge ahead of me. I have read many accounts of how people have felt when given the diagnosis but I find it difficult to put into words – except that it is surreal.

On 16th October 2014 I was travelling from one meeting to another in my hectic work life when I had the phone call. I wasn’t particularly anxious because I’d been told when having a biopsy the previous week that he was 99% sure it wasn’t anything sinister. Exactly what I had wanted to hear. Besides I’d had a CT scan and ultrasound during  the last year which had been reported that my ‘funny lump’  was a congenital abnormality.

That day however the NHS was too efficient. The phone call I received was from the Breast unit telling me that they’d received a referral and I had an appointment the next day. Taken aback I asked whether it was for further tests. The voice said that I might have some tests done. Almost immediately I had a second phone call from the Specialist Nurse. She asked where I was. Driving I said. Shall I ring you when you get home she asked. No tell me now – I think I already know.  She said that everyone had been very surprised with the result of the biopsy and that a referral had been made to the Breast Surgeon.  I told her I had an appointment the following afternoon.

I rang my brother to tell him, collected my laptop from work (had a hug from my friend in the car park) and headed home. I got into the kitchen and told my husband. He looked as if I had shot him – he just stared at me. I shouted at him to say something but really there is nothing to say.

That was the beginning of my journey. I have always hated roller coasters – an ex-boyfriend made me go on one in Blackpool once.  I hated it and I think started to hate him as well for making me get on. It was the beginning of the end for that particular relationship. I’ve heard people say that it is an emotional roller coaster and it really is – the only problem is you can’t get off.

So, I am going to learn how to ride and enjoy the bloody thing. I am going to be in the front seat with my hands in the air screaming with a mixture of fear and excitement so that when I finally get to the end I can say – wow what a ride!

I don’t fancy doing this journey on my own so I am inviting you along for the ride. I can’t guarantee that it will be smooth, I’m not sure yet what I am going to write but I do know that I haven’t lost my golden balls – so be prepared!

As I am writing this the sun is shining, I’m sitting in the garden and life is good. I’ve got shorts on but hidden underneath are my big pants.

There are times when I think that this wasn’t the plan but now I have an opportunity to switch to plan B and who knows that might be a lot more fun.

When I was first diagnosed I made 2 rules for myself. The first was – if you can’t sleep, don’t lie there – get up and do something or anything. The second rule was that there would be no other rules – wow imagine the freedom that gives me.

Originally posted to Andrea’s own blog www.apjbigpants.wordpress.com on April 18^th, 2015

My Mother's Day Gift! ~ Fiona

March 15^th 2015 was going to be a special day, my daughter Rachel and her partner Thomas were bringing my 3 day old Grandaughter Charlie home from hospital.  Up showered and get ready for the day, however that particular morning in the shower was when I found 'lump'.  

Parked in the back of my mind to enjoy the day receiving my gifts and seeing my youngest daughter as a mummy with Charlie. I also had a lovely face time with Laura my oldest daughter with Oliver who was 18 months at the time, she lives in Colchester! A perfect day! Except 'lump' was in the back of my mind whilst going to bed.

Next morning rang GP, there were no appointments, “Is it an emergency?”, I was asked, no its fine not an emergency.  I drove to work sat in the car park and rang GP back, explained that I had found 'lump'. 4.45pm that day had my first of many appointments.

26^th March was diagnosed with Breast Cancer – WOW.

My first discussion with my Breast Cancer Specialist nurse was that I’m booked to go to Tuscany in June, it’s not up for discussion you will have to work around this, because I am going.

Telling my daughters was the most awful experience. They had babies, I had everything to live for, amazing husband, gorgeous girls and two beautiful grandchildren.

21^st April Operation Day, Mastectomy & Reconstruction. Left hospital 25^th April.  BOOM!  What next?  The all important results, what did they remove from me?

Thursday 7^th May was an important day for Scotland it was our referendum election day, huge day for a lot of people.  For me there was only one thing on my mind to get to that appointment and hear whatever they have to say to me……… No Further Treatment…… Really I couldn’t hear her for the tears rolling down my face. 'Lump' was removed I was clear to go on and live my life and enjoy that holiday in Tuscany.

Home now to give everyone the good news.  Emotionally drained what a rollercoaster.  So, the flowers stop arriving, visitors stop coming, phone stops ringing.  That’s it I’m sorted.  Not a chance!  Feel so alone, invisible. How can this be?

Whilst having naps I kept getting this one picture in my head, over and over again.  I was on a train and my team of specialists were on with me, the train stopped and off I go onto the platform, turn round and my team were still on the train, it was moving away. I had no idea where I was no signs, just standing on the platform on my own. Where do I go? What do I do?

A few days later whilst having coffee with a friend, I told her I was feeling a bit isolated etc., she gave me the number for a local organisation Cancer Support Scotland.  I made an appointment and went to see them on 21^st May.

I met my lovely Massage Therapist who gave me six amazing massages. I also met with a Talking Therapist both of these people have become invaluable to me. On returning from holiday I continued with the treatments all free, then when my massage therapy was coming to an end I really wasn’t ready to walk away from this beautiful renovated chapel which is the most calm, tranquil beautiful space – my little haven. I decided to speak to someone about becoming a volunteer. I volunteer at the reception on a Saturday morning and have been doing so since.

Cancer Support Scotland was the missing sign on that train station. I am not alone I have found a beautiful space where I can contemplate, feel safe, and give something back.  They have taken me by the hand and allowed me to have the time to emotionally heal.

Last week I was asked to do a talk at a women’s guild about my personal story with one of the fundraising team. I was a little nervous, you could hear a pin drop, I got to the end of my story and asked if there were any questions I could answer. This lovely little lady said how brave and courageous to speak about my 'lump', she also said that it must have been difficult the first time I spoke. When I told them that this was my first time, they all clapped. It was so lovely.

So as we approach Mother’s Day 2016, Charlie will be 1 year old, Oliver is 2 & half.  I will get up, have a shower and enjoy my day as last year. Hopefully without 'lump'.

Huge gratitude and love to my daughters Laura and Rachel and to my rock Stuart.

My Mother’s Day gift to you all is to cherish each and every day.

Fiona

x

Ducks and Buddhists ~ Nina

Looking at the skies for something, finding ducks and accepting help

With all other changes to myself, my surroundings, my friends, my life; I do recall that May last year still felt like May always had. It's always been my favourite month. And perhaps more a splodge of ego than anything else winning me over- for it is my birthday month- I do recall it felt the same as ever and that was wonderful as I don't even feel like me anymore so why should May feel like my special month. May was always a month of newness, freshness, colour, sunshine and an enormous dose of shaking up and shaking off. But this year especially I had felt like a closed oyster. Tight and tough, cross and yet well protected in my shell. I still tried to occasionally walk a little way though since chemo stopped and even whilst I was paying for it for a few days after, I tried to convince myself I could build up my muscles and get outdoors again. The picture above was one of those days. And what did I get rewarded with? A giant duck- what else?!

But bone mets don't work like that. Muscle is connected to bone, bone is fragile and extra pressure on bone is not recommended- at least by my oncologist and osteopath. I was saddened. I'd taken so much pride in creating this ‘outdoorsy girl’ since my first brush with cancer ten years ago. Go get some bloody hobbies I thought, get up out and LIVE! Do what all the cancer positivity seems to be saying. And I did, I really did. I ate well, got fit, got superfit, took some outdoorsy qualifications and oomph I was off. I left my husband, found my first love and ‘did stuff’. I'd never felt so free either and so able to express myself outside of an increasingly dreadful work environment in FE. I had reinvented myself and I quite liked her. 

But now here I was. Am.

I'd thought about dying several times. My first love left once it was clear what my life would be like. Or did I push him away? It's possible but it's also possible I was protecting myself for I knew he'd never care for me. His ego had got more enlarged in our lives and he earned himself the nickname of Munchausens Matt due to his penchant for hospital beds and doctors surgeries. It was scary.

I did a few cool things with friends, some bucket list stuff which actually felt like a necessity back then but I got increasingly tired and less able to manage some of my wonderful ideas about what fun was (and it wasn't climbing up 127 steps to a sticky cottage in Whitby- though once we'd got up or down that was pretty nice). I got some complimentary holidays too from a couple of great charities and a fabulous friend who's still leading the support at my rear and had great laughs with family and friends. But it was so very tough and I began to realise that home was where I was happiest and safest. And more comfortable!

But back to May. I'd recently finished a long and arduous chemotherapy of docetaxel and I really did feel dead inside. Body working but my spirit felt kicked around. What on earth was living? Is this it? Can I choose my own way out of this? My heart was with my children though and I felt like on reflection they kept me hanging on in there like their smiling faces did for me ten years before whilst doing a similar treatment. Primary cancer felt like there was a mountain to climb. And then get off. In comparison Secondary felt like a plunge pool of gunk- never to get out of or wash away . I felt so trapped and battered down. Is this it I kept thinking? And then the book came.

How To Be Sick: A Buddhist Inspired Guide For The Chronically Ill And Their Caregivers by Toni Bernhard. The book came with me each morning to the bath. I would soak my sore and aching bones until cool and then covering myself in a thin towel, take the book quietly back to my bedroom. I didn't want to be ‘ chronically’ anything though. I'd always tried to maintain a hard, tough ‘in-charge’ exterior and this wasn't my idea of tough alpha girl material. And I didn't want to be sick. I wanted to fight it to build it up to walk it off to shake it out. But I cowered inside like a small thing and after a shaky start read and read and read this ‘bible’ of support and hand holding and spirit building and of courageous living. Toni Bernhard gave me a promise of a ‘not too bad life’ and that felt better than ‘good enough’ it felt achievable and realistic.

“There is sickness here, but I am not sick”; again she meditates, “There is sickness here but I am not sick”. Perseverance wins as she realises after saying again, “Of course, there is sickness in the body but I am not sick!”. What Bernhard described as both a revelation and a source of great comfort was her discovering the Buddhist sense of Annata, or an unfixed or unchanging self. A revolutionary departure from its Hindu roots, the Buddha offers to the disciple a sense of a self which is fluid, as she says “ an ever changing constellation of qualities” (p.38).

So here I was. Soaking to the point of deep wrinkling. Osmosis occurring as my body offers its own water to that of the bath. As pink and wrinkled as a newly born Aardvaark. I'm not sick.

Stage IV and beyond... ~ Vicky

June 19^th 2006 is one of those dates I’ll never forget. I was dragged kicking and screaming into the world of cancer when at the tender age of 31 I was diagnosed with a grade 1, stage 1 primary breast cancer.

In a nutshell, I had surgery, was told to go away and have the family we so desired and in the nicest possible way, never to darken the doorstep of Oncology again!  I took on the mission and welcomed my children in 2008 and 2010, and over time and with optimism, cancer was relegated to lower leagues while I threw myself into family life.

Fast forward to early 2015, I developed difficulties with my usually trouble-free back, and at the same time was called for investigations on a suspicious axillary lymph node that had reared its head on a routine check-up. 

And so it came…the first strike…the cancer was back!

Then June 16^th 2015, the big C bomb dropped…it was stage IV/metastatic breast cancer.

There is no stage V.

So there it is…40 years old with a metastatic cancer diagnosis. Let’s leave that hanging for a moment.

~

So, what is stage IV/advanced/metastatic breast cancer?

Millions of cancer cells form a tumour. The original cancer in the breast is known as a primary breast cancer.  People do not die from cancer that remains in the breast area.

Secondary breast cancer occurs when breast cancer cells spread from the primary cancer in the breast to other parts of the body. This may happen through the lymphatic or blood system.

You may hear it referred to as:

• metastatic breast cancer
• metastases
• advanced breast cancer
• secondary tumours
• secondaries
• stage 4 breast cancer.

The most common areas breast cancer spreads to are the bones, lungs, liver and brain. When breast cancer spreads, for example to the bones, it is called secondary breast cancer in the bone. The cancer cells in the bone are breast cancer cells. 

A diagnosis of secondary breast cancer means that the cancer can be treated but cannot be cured. The aim of treatment is to control and slow down the spread of the disease, to relieve symptoms and to give the best possible quality of life, for as long as possible, but this can vary significantly between individuals.

Information about metastatic/advanced breast cancer can be found at www.secondhope.org.uk

~

So here I am now living with an illness that will cut my life short one day when the treatment options run out, but I suppose tomorrow is never a given to any one of us. However MOST people will grow old with their loved ones and live to see their children/nieces/nephews move on through their lives, careers, get married and have their own children.

We should perhaps live in the moment more and less emphasis should be put on milestones, but the uncertainty of living with a life limiting illness is not the same as the general uncertainty of everyday living. Nobody knows what might happen when they leave the house each day, but this is different. You do find yourself looking ahead; wondering if you’ll be one of the lucky ones who make double figures, if you'll see your young children hit milestones, guide them through adolescence and less likely into adulthood.

While wading through a sea of uncertainty, I read a comment on a forum about traumatic events happening in our lives for a reason, to make us stronger or help us grow, but this just doesn't sit right with me. Almost immediately I stumbled upon a blog by Tim Lawrence examining the topic of resilience in the face of adversity. He lives with cerebral palsy and epilepsy and believes no one should face adversity alone. He published a post entitled 'Everything Doesn't Happen For A Reason', which really struck a chord with me.

I have never questioned why me? Because I suppose why not me? But like Tim, I cannot accept that there is an underlying reason for the hand I have been dealt. My diagnosis may give me more focus but will taint my life in other ways. Our children may be encouraged into a purposeful life as a result but it will destroy our family unit, and where's the reason in that?  My family, friends and our incredible children do not deserve this, and neither do I.

There is often expectation that the only option in these circumstances is to always think positive but the post reinforced that I can give myself permission to be sad and grieve for the life I had and for my young family's future...this is normal behaviour in the face of adversity.  So between my own abundance of positivity, strength, resistance and even normality, I am allowed to feel the way I do now and again when the waves of grief and devastation crash over me and sometimes continue their onslaught all day. What I have learned though is that on those days I know I can make it out of the other side and pick myself up, and that as long as I do, our family unit will lso will tarnish my life in others. My children may be encouraged into a purposeful life as a result of this but the other side is that it will destroy our family unit, and where's the reason survive for now. Slowly, quietly, never giving up.

I cannot fix this but I will carry it.




http://www.timjlawrence.com/blog/2015/10/19/everything-doesnt-happen-for-a-reasonnnot accept that this needs to happen to me in order for me and my family to grow.

This article has helped confirm that I do not have to think positive all the time as is often expected and unfortunately this is me now so if people can't handle me having negative, down days I cannot use energy on this. I am allowed to grieve for the life I had, the life I want, which is not to be embroiled in stage 4 cancer, and to grieve for my young family's future. In between my positivity and strength I am allowed to feel the way I do on some days when the waves of grief and devastation crash over me and sometimes continue their onslaught all day. What I have learned though is that on these days I know I can make it out of the other side and pick myself up ready for battle again and as long as I do, our family unit will survive for now. I cannot fix this but I will

A - Z of my year with breast cancer – just for fun…… ~ Tracey

A – is for Apple everything – iPad, iPhone, iMac! Don’t know what I would have done without them all. Also for crazy curly Afro hair – seriously it’s just growing out and I’m going to look like a member of the Jackson Five if it doesn’t calm down soon! And Adventures yet to happen!

B – is for Boob – just hope to have a matching pair at some point! Blue Butterflies, Blankets, Bed and Beach! love the beach – I need to get there soon! Blogging and Blogs! Both writing mine and reading a lot of other amazing people’s blogs really help.

C – is for Cuddles with Clover, Coconut, Chocolate, Candles, Cake, Cinderella (my favourite fairytale) and Courage – you need a lot of this with cancer!

D – is for Doggies and Daffodils – both make me so happy!

E – is for Eating, Exercise and E-bay – all of these make me feel good!

F– is for Friends and Family as I couldn’t be doing this without all of your support and help. Also cosy Fires, Fairytales – love a happy ending, Facebook, Flowers, Florida (as you know we hope to get back there – always good to have a dream!), Faith that I’ll get better, but also Fear of the unknown.

G – is for God (I really hope there is one and he can get me through this) and Garden because it makes me happy!

H – is for HER2+ and Herceptin – bad as it is, I’m also lucky I can have this treatment. Crazy Hormones too! But best of all Happiness and Holidays!

I – is for injections – lots – I am like a human pin cushion and my veins ache! Also for Implant of new boob, and Italy as we hope to visit!

J – is for Juicing! Beetroot and spinach literally saved my bloods last year!

K – is for Keep smiling even when it’s really bad and Keep going. Kindness that has been shown to me and my family, and for Kale – which is helping to keep my bloods good – it’s amazing!!

L – is for my Love of Life – cancer does that to you! and of course Lemons! I am totally addicted to lemons – and they’re meant to be good for you too!

M – is for Mermaids, Miracles, Music, Massage, Muga Scans, Making Memories and of course my lovely March Marvel 2015 gang! love you girls!

N – is for NutriBullet and New – as in new me, new boob, new way of thinking, just new!

O – is for One step and day at a time! It’s the only way to do it now! Also for Odd – I feel and look odd – I’m an ‘even’ person so this is difficult for me!

P – is for Phil (my hubby – he’s been amazing), Positive thinking, Pizza and of course Photos and Pictures!

Q – is for Quilts – to keep me busy! always good to have a hobby and to give the children a keepsake.

R – is for Reading, Relaxing and Resting.

S – is for Swimming which helps me to cope with the pain, Sunshine which never fails to cheer me up and warm my bones and Strength to deal with this.  Also Sewing, Socks to keep my feet warm, and Spinach which I eat every day like Popeye!

T – is for Tattoo – which I hope to get to decorate my new boob, and for Turkey – what an amazing family holiday we had there!

U – is for Universe and the Unknown – cancer makes you think a lot!

V – is for Vows, which we hope to renew on a nice beach – not sure when or where yet though!

W – is for Warm (it helps with the pain), Work which I love and gives me a bit of normality and routine and of course Weddings! I love a wedding!

X – is for X-rays and scans – all sorts – have to have lots of these!

Y – is for Yoga which helps the mind, body and spirit – everyone should try!

Z – is for Zoladex – bit of love and hate here but it has allowed me the option of having other medication to keep the cancer away so it has to be on the list.

Z is also for Zombies! ha ha.  May sound crazy but we’ve just started watching the Walking Dead.  I hate horror movies but this is absolutely brilliant! It reminds me that things could always be worse (bit like watching Sky news too!) – you see the world could be over run with Zombies chasing us which is much worse than cancer!! I also love the special effects – really should have worked in the movies!

You can read more about Tracey's experiences at her blog:

https://battleofbritten.wordpress.com/