Thursday, 31 March 2016

Silent Tears, Hidden Pain ~ Nell

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It came to my attention today while scrolling through Facebook that a wonderful and brave lady called Holley Kitchen had lost her battle with breast cancer. I watched the video she made at age 39 years when she was diagnosed with metastatic breast cancer. This had a profound effect on me and I felt that I wanted to share my own story.

In March 1989, I was working as a nurse in the hospital in my home town. I was 39 years old, married with two children. I had been a nurse since I had been eighteen and I really loved and enjoyed my work.

On the 28th February 1989, while I was getting ready to go on night duty, I felt the lump in my left breast. It was central, right on the nipple. I didn’t panic, or scream, or shout. I called my husband upstairs as I needed to give his opinion - was there a lump or not? It felt hard and fixed and was the size of a 10 pence piece. My husband didn’t say a word. He just nodded and went back downstairs while I sat on our bed with my mind in a daze.

When I presented myself to the GP the following morning, he examined me. He didn’t think that there was anything to worry about but said he would refer me anyway, there was a breast cancer clinic taking place at our local hospital that afternoon. He telephoned and got me in as an emergency. By now, panic had set in and I kept feeling the lump every five minutes or so, willing it to disappear. Obviously it didn’t.

Sitting in the clinic, I began looking around at the other women and realised I was the youngest there. I had nursed many women with breast cancer but never one as young as me. I decided that I didn’t have cancer. I was far too young. This was going to turn out to be a cyst or something. I was going to be fine.

After being examined by the consultant, he decided to take some fluid from the breast and send it to the lab. This was on a Wednesday. I wouldn’t get the results until the following Monday. All of a sudden I was filled with such fear that I could hardly breathe. After a chat with the specialist nurse, I went home.

The days passed slowly. By Friday I was desperate to know one way or another. During Friday evening, the door bell rang. When I answered it, there was the breast cancer specialist nurse and my ward sister. And then I knew. I looked at their faces and I knew I had breast cancer. They were so kind they had come to tell me in the privacy of my own home. Whatever my reaction, it wouldn’t be seen by a clinic full of patients. I just asked what would come next. I was told to come into the ward for admission on the Monday morning. My surgery would take place the following day - March 6th 1989. I didn’t ask what my surgeon would do and he didn’t tell me. After they left, I completely lost all self-control. My husband changed colour and seemed to age in the two hours it took me to calm down. Both my children were out with friends for the evening. My eldest was 18 years old at the time. My youngest was 15 years old and still clingy. I couldn’t turn around without her being there.

Lying awake in bed in the early hours of the morning, I knew I would have to tell them that day. It was then that the guilt hit me. What was I doing to my family? I was about to blow their happy world to bits. I was going to hurt them, to frighten them and worry them. How could I do this to them? I can tell you now, truthfully and honestly, that was the worst part of it all, watching the fear on their faces. Not being able to give them the reassurance that they needed. They were so upset, so frightened and I as their mother had caused it. My husband tried so hard to be strong for me but I could see the fear in his eyes.

When I was admitted to the ward, the Surgeon explained that as the tumour was in the nipple area of the breast, he wanted to perform a total mastectomy, with clearance of the axillary lymph nodes. These nodes would then be sent away for testing to see if the cancer had spread to my axilla (the lymph nodes under my arm). He wanted to take the whole breast as he was worried that the cancer would infiltrate my chest wall.

I was numb. I thought, this is real, this is happening. I tell you honestly, I was terrified. I didn’t ask any questions, in my mind it was over. I might die, sooner rather than later. And in the time I had left, I would rather live my life with one breast. To me my life would never be the same again.

They gave me a sleeping tablet that night. It didn’t work. The fear and blind terror kept me awake. How would my husband react when he saw my body for the first time? Would he still find me attractive? I didn’t think so. How could he? Mutilation was the word I was thinking of. I would be mutilated. I would never wear a swimsuit again. I would have to wear special bras. I cried and cried. I felt so sorry for myself. I didn’t have a positive bone in my body.

Morning came and I was prepped for theatre. Off I went, putting on a brave face for everyone.

You must remember this was 1989. Things were so different then. Today there is a fantastic breast care specialist unit in our hospital, reputed to be the best in Wales. Back then they did not have the facilities they have today.

Two days after my operation, the day came to change my dressings and for me to see the wound on my chest for the first time. When the bandages and packing was taken away, I looked down to see the left side of my chest was flat, with a wound running from my central chest to my axilla. It was held together by black cat-gut stitches and looked very red and angry. And I just looked down and felt nothing. This was the beginning of my trouble. I didn’t feel or show any emotion at all. I just blocked the whole thing out. Big mistake.

A nurse came to the house to change the dressings for a few days after my discharge from hospital. Three days later, when I was in the bath, I asked my husband to come in. When he saw my scar, he said “Was that what all the fuss is over, that doesn’t look too bad.” I went into meltdown, I screamed, I shouted, I cried. All the time stomping around the bedroom, shouting “I have been mutilated.” I collapsed on my bed and cried so much that I didn’t think I had any tears left.

The following day I was back in my shell. I was always smiling, laughing and being brave Mrs Wonderful. Oh yes, everyone thought I was great to come out of my operation full of the joys of spring. Eight weeks later I was back at work. I had the results of my lymph nodes biopsy and the cancer had not spread so I didn’t need any more treatment, just 3-monthly check-ups. When these were due, I would get my hair done and dress up like a model, full make-up on and nothing out of place. I would walk in with a big smile on my face. To them I looked the picture of health, brimming with confidence. Inside I was falling apart. This went on for years.

After surgery, I was given the drug Tamoxifen which I had to take every day and can bring on an early change of life. One of the side-effects is weight gain. In three years, my body image had changed dramatically. I had gained a lot of weight. I looked bloated. My remaining breast grew at an alarming rate, so undressed, I looked hideous. But still, the outside world saw only a happy, smiling, confident person.

Two years later, I had an implant fitted. The pain of the operation was pretty bad but I didn’t show anyone. Now instead of an empty space on the left side of my chest wall, I had a large, round, hard lump under my skin. It did nothing for confidence. I looked dreadful - with one sagging breast and one immovable, hard lump minus a nipple. Still, I pretended I was thrilled with the result and got on with things.

One night, during a night shift, I lifted a patient off the emergency trolley onto the bed and slipped two discs in my lumbar spine which I had to have removed. I was left with nerve damage. I was 49 years old. I never worked again. A couple of months later, I had to have my breast implant removed as it was working its way up my chest wall and was far too high. The second implant was not much better, I was still left lop-sided. Under my clothes I was a mess but I put on my happy face so no-one knew.

It was about this time that I began drinking heavily. I had reached rock bottom. I could not have gone any lower. But I was still dragging myself out of bed every morning and going through my routine. I had a check-list in my head: clothes - immaculate, hair - the same, house - immaculate. I was good, very good. No-one noticed. Not for years. My drinking continued and my health began to deteriorate. I was admitted to hospital to have yet another implant. I even had a few drinks before admission. At least this implant was a success.

By this time I was refusing to leave the house, only going if I really had to. My husband was as loving and supportive as ever. He did all our shopping after work and he didn’t even comment on my excessive drinking. He thought I had bad nerves. In fact I was drinking myself to death. I hated myself, my body was a mess. I put on a huge amount of weight so now my implant did not match my other breast which had grown.

Eventually, it all came to a head. My friend, a nurse, who was visiting noticed how breathless I was. She also noticed my swollen ankles and the next thing, she asked to see my stomach which was hard and swollen with ascites. She rang my GP who came out and the next thing was that I went into hospital as an emergency. The Consultant was amazing. They had caught me in time and as long as I never had a drink again, my liver would survive. It was by talking to my doctor that the true way I felt came out. I had been living a pretend life, and he said it had all started with my mastectomy. Pretending I was okay so my family and friends would not worry. He told me I had never come to terms with it. I hid it away as if it had never happened. 

Looking back, I realised he was right. Not once did I cry or talk to anyone about it. If people offered me sympathy and empathy, I would push them away. Getting out of the shower, it was easy to avert my eyes. When I cried, I did it alone, when the house was empty. Towards the end, I spent a great deal of time alone. Most of my friends stopped calling, my husband was at work all day. By now, my children had their own lives. And it suited me to be alone, I didn’t have to pretend.

I spent three weeks in the hospital, with plenty of time to talk to various health professionals and plenty of time to think. This was 6 years ago and I haven’t had a drink since. I am well and feeling great. I have learned to love myself and my body. I look at my mastectomy scar and think of it as a battle I won. I didn’t deal with my breast cancer at all, I shut it out. It was the worst thing I could have done.

I am 27 years post-op this month. I have come a long way. I am disabled now due to the nerve damage in my spine but I am happy and at peace with myself and my body image. I have got my self-respect back. But most importantly I don’t keep things to myself anymore. No man or woman is an island we all need someone at sometime.

  

Wednesday, 23 March 2016

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

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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


  

Thursday, 17 March 2016

I am now an Artist with Cancer ~ Amanda Hayler

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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.



Thursday, 10 March 2016

Operation Big Pants ~ Andrea

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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 18th, 2015

Sunday, 6 March 2016

My Mother's Day Gift! ~ Fiona

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March 15th 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.


26th 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.


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


Thursday 7th 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 21st 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

Tuesday, 1 March 2016

Ducks and Buddhists ~ Nina

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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.