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Showing posts from 2012

Open your eyes and look at the day.

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"If you wake up and don't want to smile If it take just a little while Open your eyes and look at the day You'll see things in a different way Don't stop thinking about tomorrow" The year is drawing to a close and like many I am casting my eye back and reflecting. As I made plans with my family for the year ahead I mentioned "I won't be having surgery this year" and I realise how this has punctuated my year-and the previous one. In a year where I faced major surgery and had times when I was investigated for lung and bone secondaries it's such a relief to say that. My recent visit to the clinic and negative mammogram means I now have a clear run for another year till my next appointment. This is partly because I have declined further treatment but I have done this with knowledge and its my decision which I can change at any time. My decision not to have further surgery is to protect my wider health and perhaps because for 18 years I

A heartful Christmas

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It's been all quiet on the blogging front for me. A combination of rushing around, seeing family and a rotten virus. My creatives juices are in a hanky and my cough is frightening the puppy.....and me. My pre Christmas preparations have been fueled by paracetamol.And I have greeted friends with air kisses! But there has still been lovely times with family and colleagues; I even managed to get some dancing in! Cheesy Christmas tunes in a venue overlooking the winter fair in Edinburgh sealed the deal. I loved it even if the evening may have secured me a new nickname following a comment from a dancer who chose to join our merry band. No ,not telling you, I was unwise enough to tell the family and am suffering the consequences! And the week when ancient calendars predicted the end of the world , for some people their own world did end. I am thinking especially of the shooting of the children and teachers in Connecticut. I cant watch the news coverage of the town prepa

A true partnership...or time to boogie?

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Yes its beginning to look a lot like Christmas. The lights are on around town, the mulled wine is flowing and families tempted by excess, lured by snowmen to show love through their gifts, look in equal measure exited and stressed. Or is that just me? The juxtaposition of the Christmas pressures and the deepening economic challenges in the country make this a hard time for so many. And if you factor in serious illness or loss it’s a potent mix. Every nurse can tell you of a patient who hung on against the odds to get to Christmas, to wait till a child arrives from Australia, to see a child perform a Christmas play…you get the drift. The poignancy of these occasions is without comparison. And people in the main do cling to life, their definition of quality shifting as illness advances ,but time with those we love are always top of the list. And its this that drives much of the access to medicines discussion. But let me say this isn’t just about medicine. We know that surgery and

Nice to tweet you! Info about a new tweet chat...do join

I wanted to share with you something really special that is happening  tomorrow evening . We have learned from our friends in the US the benefit of tweet chats to disseminate information and build community in the way that only social media can. The immediacy  and connection so powerful. And I have often read the conversations after the event but never had the stamina to join it ( it would be  2 am  in the UK and Ireland). Consequently we are keen to try to connect across Europe and create the space and opportunity to explore the important issues you share with us. As my blog and others have highlighted many times breast cancer has an impact on so many aspects of life. But perhaps parenting and parenthood can be one of the most emotive impacts. Consequently this is the subject of the first BCCEU. Here is more about the context. http://breastcancerchateu.wordpress.com/2012/11/27/parenting-with-breast-cancer So please join us for this on line experiment and also let us know what you woul

"You have to find joy where you can".

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And so it begins, the beginning of the endings......and the hankies have been out. Although the week started with a Geordie style celebration of the amazing efforts of two men. Robbie Elliot and Phil Gray who had completed a 3,500 mile cycle ride in aid of the Sir Bobby Robson foundation and Breakthrough Breast Cancer. Newcastle had come out in style and I even got to sit next to the legendary Jackie Charlton.Any football fans I mentioned this to since have been very excited. I managed to spend an evening talking about managing Ireland football team and fishing as well as defending my family from Sunderland! It's an eclectic skill set for this job, you see? I did a short talk about why our work is so important. And I mentioned Angie who is much in my mind just now as the anniversary of her death approaches. The cold Edinburgh December evoking that sad day as we said our goodbye. And what I repeated was her reply to the question...are you scared of dying? "No

Compassion and holding snakes lightly.

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" Compassion is a muscle that gets stronger with use ." Gandhi If I say I am currently wrestling with the urge to open a packet of Percy pigs I was foolish enough to buy, my regular readers (ha!) will know all is not on an even keel. It's better than last week though, having survived a full on -and if I'm honest-emotional week. On one day alone I went from carer of frail member of the family to chairing a key meeting in the afternoon with a considerable drive in between. That morning also included taking her to see the GP who was kind and competent but the star for me was the receptionist. She had gone out of her way to be kind and respectful in the face of frailty, with a strong dash of practical competence. I thank goodness for her...not just for my family but the many families she helps. I was reminded of that when I attended the conference on person centred care the next day. Some key questions were posed like how do make make compassion reliable? And also i

What doesnt kill you makes you stronger?

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What doesn't kill you makes you stronger! A Scottish homily that reflects the stoicism in our culture. But is it true? Considering my recent decision to swallow brave pills and take a big step, it is certainly influenced by my recent illness. I know I'm not alone in making a decision following a cancer diagnosis-to make a long held wish a reality. And the knowledge that you have faced the hard stuff and survived is a powerful affirmation of life.so for me at least at one level its true. But it's also influenced my health and that too affects my opportunities and decisions. Does one cancel out the other? I suppose that can only be weighed up be each of us. But the truth is for many a cancer diagnosis affects their employment, income and housing fundamentally so whilst it may be counter balanced by a bold decision for quality of life for some. For many there will be no choice, no long held ambition to realise, just a tougher reality to adapt to. And physically there are oft

A week for a big decision.....

" Dont ask yourself what the world needs, ask yourself what makes you come alive and then go and do that. Because what the world needs is people who have come alive" This has been a week for a huge decision. Not one that snuck up on me of course. It's been building for some time. As you know I have had the reminder , for the second time in my life, that life and health is our greatest treasure. And now I am mostly recovered from my recent illness it's made me think...what next?  Now, not in a," what if I am going to die sort of way ". More of a ," how do I want to live ?"And the answer is there are some things I still really want to do in my career and there is some balance I would like to achieve in my life. In order to do that, I need to make changes.  I came to my role in Breakthrough to set up the charity in Scotland. I was fortunate to recruit a great team who shared my desire to be the best we could to represent the people affected

Settling arguments of breast cancer screening?

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So at last we have it the results of the much heralded (in my world at least!) breast screening evidence review. It has been anticipated by the breast cancer community, in the hope that finally this is the one that settles the arguments. So does it? The UK breast cancer charities have looked at the outcome and feel , yes, this is good news for women. The review has shown that breast screening can save lives-around 1300 a year in the UK, that’s around 130 here in Scotland. But there are some downsides to screening reported in the review. The data suggests that 1 in 5 of those diagnosed through screening is over diagnosed. So some women are diagnosed and treated for a cancer that is at such an early stage it may not have caused them harm in their lifetimes. The problem is we don’t know at the moment which cancers will grow and become harmful so all women in this situation will be offered treatment. But let’s not forget that also means 4 in 5 women who have a cancer diagnosed throu

"This is who we are and much much more."

In my mindful weeks holiday I have enjoyed time to reflect on some of life's paradoxes.And then I read the wonderful open letter to the woman who called Obama a retard on twitter, Letter from Special Olympian .Please do read it, you wont regret it. Its a dignified challenge full of grace and eloquence and I felt compelled to do this short blog after reading it.  As it made me think of how often disability, illness, change in circumstance affects peoples perception of us. That somehow this difference makes us less then we were, different from others,in need of a different approach. The head tilt that says so much. Now of course that's not always bad, if the encounter is one of empathy and mutual respect . But I guess my plea is , see the person not the condition. And also remember that every experience in life makes us who we are.I loved one of the quotes from my Mindfulness class last week, "Pain is inevitable but suffering is optional" . An important message to all

Smile because it happened.

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     I was going to write about prevention and breast cancer this week.But I am on holiday and trying to practice my mindfulness more regularly so i have decided I might just do some mindfulness reflections instead.A little post regularly to enable my mindfulness practice. "Dont cry because its over, smile because it happened." Dr Seuss The quote above came to mind as I reflected on a really lovely family weekend, celebrating birthdays and seeing so many people I care about in one room, from new born babies to people 80 years plus. What a complete joy and how quickly it galloped passed. They have gone home now, the puppy is coming back down from hyper space and the cat has emerged back out from under the bed.And I have a week off to recover! So yes i feel a bit sad its over...of course I do.But mostly i'm really smiling with fine memories and looking forward to the next happy occasion to treasure.

Heartfulness?

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" Live your life each day as you would climb a mountain. An occasional glance towards the summit keeps the goal in mind, but many beautiful scenes are to be observed from each new vantage point" So this week saw day one of my eight week mindfulness class. Leading me through a process which I hope will help to embed  practice of being more mindful. It's a secular process aimed at increasing well being and reducing stress. Me stressed? I know, such a preposterous suggestion:/). Our first week involved going around the room and describing our expectations and challenges currently. As I described my expectations and current challenges I found a strange sadness settle on me. I often talk about my experience of cancer but I usually bat it off with skill. I did say to the group I am well now but hoping mindfulness will help me achieve better balance at this stage of transition. But something in the admission to a group of strangers made it so much more real and it

Just dont ask me to wear pink, OK?

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It's impossible not to know its breast cancer awareness month, with national landmarks fabulous in pink. Journals full of stories of women impacted on by breast cancer and numerous news items. And I am remembering that last year I began to feel a little overwhelmed by it. Bizarre given my job , but true none the less. And I notice in me a reluctance to wear pink , almost as I am surrounded by it, it's my last way to say this doesn't define me. And as read others blogs and tweets on the subject I hear their own frustration. One in particular made a special plea to remember in the middle of all the pink awareness, that breast cancer isn't a pink and fluffy disease it's hellish and hard and steals lives for too many people. It's not I'm sure intended, but the constant awareness raising , without the balance of understanding the real impact , has the effect of perhaps disenfranchising those its meant to help.It's hard to escape it and sometim

Simple acts of kindness can change a lot.

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In a week that had the Breakthrough Breast Cancer Board come to Scotland, saw the launch of Breakthrough 100 and held a parliamentary reception to launch Breast cancer Awareness month I will admit to have shed a few tears. OK some may have been about how sore my feet were by the end of Thursday and others maybe on Monday when the alarm went off and I realised a new week had begun, but mostly it was because at all the events I attended last week there was raw honesty about the impact of breast cancer on people. We hadn’t allowed a pink glow to prettify breast cancer and tidy up the traces. We faced it squarely and said we as group of people and as an organisation have the desire and ambition to change breast cancer for good.   And the pink explosion of October is a very important part of raising funds for all our work. So every pink item sold (not telling you what I just bought in M&S but it is very pretty!), every pink pin bought, every pink party enjoyed w

Whats the real story about breasts for the media?

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Ok I admit it. I have been a bit angry this week! And that's because there has been a great deal about breasts in the press last week. Our media is almost as obsessed by them as they are with tales of the royals...and of course one of the stories had them both. I guess we aren't surprised that the Duchess of Cambridge has them? Are we ? Is it legitimate to photograph them and publish them without her consent...I don't think so. But that's not the big story for me. This week a petition was launched to end page 3 in The Sun .3 http://www.change.org/en-GB/petitions/dominic-mohan-take-the-bare-boobs-out-of-the-sun-nomorepage3 . When I last looked it stood at over 30,000 signatures. By people who believe that showing women in this way diminishes all of us, male and female. It seems bizarre that we are still having this debate. How can women be seen as equals when popular newspapers portray them like this? But that's still not the big story for me. THE story about brea

Cara...its Irish for friend

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I had a dilemma about the title for this blog. Because I recently watched a TED talk called " Before I die I want to " which I really wanted to write about. My dilemma was if I call it that people will think I have had bad news, it's a breast cancer blog I write after all! And I guess the fear of dying before our time is the shared theme for many of us. But another theme is the sharp focus it gives on what you value in life. What in life you treasure most. I have touched before on my bucket -or my personal favourite -the "f*** it" list and I know that when the chips are down top of my list is time with those I love... my family and my friends. What I loved about the talk is how the project in a very simple way brought a community together. And not only did it come together but they heard each others voices and enriched their community though it. Wonderful. Again it illustrates the power of hearing the voices of communities to build a future. I d

From the coal face.....

I come from a mining area in Fife, not the area of pretty fishing villages or world leading universities. Its the one of chronic unemployment since the loss of its industrial past and with a legacy of serious and chronic disease from working in them. It's statistics are lost in the much larger challenges of the West of Scotland but  poverty in all it's  guises is no less of a reality for many communities there. But why am I telling you this now? Well recently I attended a reception in the Scottish Parliament hosted by the Scottish Council of Voluntary Sector ( SCVO) and the important point was made that voluntary sector , with it's foundations in geographical or communities of interest has an important , crucial role to play in shaping future policy and strategy for change. But that role is sometimes not valued or allowed and the voices left unheard. And it reminded me of a local tale from the village I grew up in. A decision was made ,before I was born , to build a mi

Not a glamorous as a shark bite.

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                     "Wisdom is simply pain that has healed." Oh ok I admit it, I have been a wee bit obsessed watching the Paralympics and also fascinated by the individual stories of the athletes. One young man, describing how he lost part of his leg,  explained it was because of meningitis when he was five. Not as exciting as a shark bite said he.....I laughed with him as he said it and admired his attitude. Even more as I watched him win his gold on the track just 13 years after his amputation. And the photo of him hugging his Mum, says it all about how challenging his young life has been and the important role she has played. But I have kept coming back to those words , not as exciting as a shark bite. So true of most illnesses. Often they aren't glamorous they are just hard , unpleasant, painful, distressing and in the main we hide that bit away. We don't want others to see it, we put on our brave faces, we say nothing. We are tempted by a more

Going for Gold.

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"To overcome difficulties is to experience the full delight of existence".   Arthur Schopenhauer In the same week I got advice on the physio to improve my back problem I have watched the Paralympians challenge themselves in quite extraordinary ways. From those whose disabilities from birth have meant they have always had the challenges integrating into a less than understanding world, to those whose lives have been absolutely changed by devastating events,  they exude courage and grim determination. I am awed and like many , moved by their passion to exceed. The games give them a goal, an opportunity to challenge their situations and really reinforce that message to the world;  see the person not the disability. They can teach us so much. There is undoubtedly a mind set that helps them achieve but also I guess an ability to read their bodies and know when and where to push and when to adapt or ease off. I know my own challenges are so small compared to thei

Tales of the ordinary and pink castles!

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It's wiser person who listens to advice than gives it.....I read that today and it made me think. How receptive am I to advice? The honest answer would be not always. I respond better when given choices . And challenge on my blinds spots , I do welcome....on a good day with the wind behind me! Am I tempted rather too often to give advice like Moses delivering the ten commandments? I hope not but I guess I need to check that out! So why did that resonate just now? Because I am trying at the moment to get the balance right on how to recover and get stronger and give my best to a busy job....and the realisation that the only person who can get that right is me. We are all individuals and it's just as true when it comes to our healthcare. A meeting I was part of recently explored the importance of holistic assessment as part of care. And as someone who trained as a nurse 30 years ago ( yes it's true, I had to count it on  my fingers to check if that cou

Is this person centred care?

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A week is a long time when you are back from holiday is it not? And this one for me was a bit of a roller coaster I admit. It’s a tale of two halves, one of person centred care and another of being a tourist in your own town. So are you sitting comfortably? This story begins with back pain. A thing to fear for those with a history of breast cancer I think its fair to say (one of the many lets be honest). But I have been down this road before and know many other reasons exist for back pain and found a variety of solutions from pain relief, to physio’s, zumba(!) and yoga over the years when I have had a problem. But just prior to going back to work I could feel something build up. I went for massage and it nearly killed me (ok drama queen language there…but it felt a bit like that,honestly). And as I returned to work I could feel I was getting worse. I rationalised (just tired, getting match fitness back etc) and thought I would wait to see how I was on holiday. Worse aga

In search of mojo......

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Two weeks in and its an ongoing search for the elusive mojo. But precious time with family, relaxation and time just to be ,is working some magic.  The days are lazy and evenings star filled, with some Olympics thrown in! In fact we have worked out how to sit outside and watch Olympics through a patio door as its so warm. Yes you guessed I am not in Scotland but rural Bulgaria, a very beautiful unspoiled part of the world. Our small house looks out to the Rila mountains and as I write a fine storm is rattling around the valley. Jacko the shepherds dog is a frequent visitor and is waiting at the door in the hope we will break our resolve and we will let him in because of the rain. Soft I may be but I haven’t lost my sense of smell…..so that would be a no my friend! As I mentioned last year Jacko has had one too few visits to  the poodle parlour and too many days shared with the sheep. A deep breath and you too could smell him I am sure! But even if wet smelly dog is a step way too far

Reasons to be proud

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                                                        After the storm It is estimated that there is one woman diagnosed with breast cancer every eleven minutes in the UK. Yes thats right one person, their family, their friends, their colleagues knocked side ways by the diagnosis, every eleven minutes. And sometimes in my job it feels like I know them all. Of course I don't but it's a rare day when I don't connect with someone who has just been diagnosed, heard good or bad results, lost someone they love and all the shades in between. Breast cancer after all is called a common condition, it's impact felt by many and on every one of these occasions there is a tough road to travel. Our work in Breakthrough helps to make some of these roads a little easier I hope and also very importantly gets better outcomes for them. But we also want to prevent this happening to more people.   So why am i saying this now? Well for two reasons. Recently I got an u