Showing posts from 2016

For the Global Village Storytelling Centre-From the middle of the story.

It's a year now since my third diagnosis of breast cancer. Yes that's right, third. Once is unlucky, twice is a shock, third is more wtf ! But it's still a primary cancer so bizarrely I feel lucky. But none the less it's been a tough year and over the last few months I'm gradually accepting that this is just my story. And like most stories it has a beginning, a middle and an end. And this is still the middle, the meat in the sandwich, the arc of the narrative, the -to be continued- rather than the end. Thank goodness. Sort of. Because I don't know the rules for a three times diagnosis. It's not the end that much I know. It's not even the beginning of the end as far as I know. It's more of an oops I did it again and this time meant a mastectomy and reconstruction. A flipping great scar across more that half my body, a reconstructed breast that is quite amazing and a stamina that was left on the operating table. So this year has been the gradual

Day 18 Cancers a gift*****s

Day 18 Prompt is what's the health cliche that makes you angry. So here goes, it's the cliche that cancer is a gift; meaning that somehow living with a cancer makes you wise, makes you a better person, makes you in to Mother flipping Theresa really! Utter tosh. So let's list some of the realities for me of living with breast cancer. It robs you of your wellbeing physical and emotional,it changes your body image, it robs you of confidence at times, it makes you guilty about its affect on others, it makes you see the future in much less certain eyes, it also never quite goes away even when treatment finishes. So don't tell me it's a gift, it really isn't but there are things I've learned from it and mostly it's about valuing life, the big things certainly but really mostly the little things. And so the sun is shining on the cold November day and I'm heading out with my husband to the beach with the dog. I will be slower than last year, and I will

Universal corrective-my poem for a world I dont understand any more

I wrote this poem after a visit to the exhibition of maps at the National Library of Scotland with my creative writing group; the Gallery writers, led by Helen Boden . The exhibition was unexpectedly ( for me) wonderful. As the curator said, every map is a story and what an eclectic mix it is. There is every kind of map, from a map that itself becomes a poem to a beautiful smells map of Edinburgh. But the one that drew me in was the upside down map of the world; Macarthur's Universal Corrective you can do go and see the exhibition it's a fascinating collection. The distortion of the image was an analogy for how I've been feeling of late..... Universal Corrective My map of the world is upside down I thought I knew it as a truth that my way was right or at least I saw it the right way up This way looks strange and I'm fearful of falling off a small appendage of a world I no longer recognise The centre of this map is a scattering of islands in a vast

Person centred care and realistic medicine?

Day 12 A letter to your best and worst healthcare professional It's 22 years ago this week that my father died of cancer as I had just finished active treatment for breast cancer. Over that time we saw the best and worst in healthcare professionals. What was most stark was the poor care he had in a urology ward was the opposite of the care he had in the palliative care ward. The cultures couldn't have been more different. The palliative care ward saw all of us as recipients of their truly compassionate care. His needs were explored with him and us, they were anticipated and he died peacefully with his family around him. In contrast the other ward had failed to ask him what mattered to him, discharged him without preparation or discussion resulting in an avoidable fall and extreme pain. What's most interesting is they were separated by a set of double doors and completely different cultures. What was the norm in palliative care was completely different in an acute servi

Day 10 in sisterhood for my friends in the US with breast cancer

Day 10 prompt is imagine you are answering a question about your condition. So if you've been following this blogging challenge you will have noted I've missed a couple of days. World events have meant my attention has been elsewhere and I couldn't quite find the enthusiasm to write about the prompts. Like so many across the globe I've been attached to news cycles, analysis and comment on the American election. In the main most of us will look at this through a personal lens; what does it mean for us, for my family, for my country. And it's not a reassuring lens to look through. I'm worried for our future not just here is Scotland but across the world. But what made me decide to write today was reading about the worries in relation to Donald Trump repealing the Affordable Care Act or Obama care.  Now much of my work is aimed at improving healthcare in Scotland. I use my own expereince as well to advance person centred approaches. But at no time have I ever ha

Day 7 why I started blogging..

Day 7 What made you decide to advocate for your condition  I was an advocate before I started my blogging journey. Indeed I was the Director of a breast cancer charity, Breakthrough Breast Cancer, having set it up in Scotland. My days were spent advocating for greater understanding of the condition, more research into the condition to prevent breast cancer and to prevent relapse or spread and for early diagnosis too. I had been diagnosed for the first time over ten years previously so I did use my knowledge of how it feels in my work but it was in the past for me at that stage. I started blogging when I was diagnosed for the second time whilst working as the director of a breast cancer charity. Oh the irony! My role was a very public one as campaigning was a key part of it and i had the choice of trying to keep my new diagnosis secret or to somehow use my experience to further understanding of the lived experience of cancer and why our work was so important. And so I stared to

Day 6 the superpower I would choose is compassionate listening

Day 6 HAWMC what would be the super power you would wish to have? Be careful what you wish for was the caution that came to mind when I read today's prompt. Initially what came to mind was that the power to ensure happiness and freedom from pain is the power I would like. But can we be happy all the time? Do we need darker times to help us recognise, value and protect the happier one. I would certainly like us all to be free of chronic pain as it has such an all encompassing impact on quality of life- but pain in itself could be a superpower. Pain, both physical and emotional, can teach us how to keep ourselves safe from harm. Sometimes the most harmful thing we can do is ignore when we are in pain and to keep going, to push through. I speak from expereince here! So pain can be our teacher if we are listening to it. That leads me to listening as a super power. As a health activist so often the loud call is to be heard properly within the system of health care; to be listened

Day 5 All of a twitter

Day 5: what's my favourite platform to have my voice heard? Ooooh I've found this a tough one! The social media platforms I use mainly are Twitter, Facebook and Instagram and there are reasons for using each. But what I like most about each of these are what I read and learn about. Instagram for me is about seeing photos of babies, cats and dogs!  I really enjoy that but I enjoy it more than I post. Facebook is for me to engage with people I know, to share family photos of special times, cat/dog photos of course and when I'm wound up the occasion political rant to be really honest. But if it's about sharing my blog and sharing the range of things I'm interested in and learning about so much it absolutely has to be Twitter. Tantalising Witty Informative Teasing Trendsetting Exasperating Ridiculous  And just a wee bit addictive too....don't say I didn't warn you! 

Day 4: Lighting up the darkness- a letter to myself on diagnosis with breast cancer

  Day 4 the prompt is to write a letter to yourself at diagnosis knowing what you know now. This is a hard one for me  as I have three diagnoses to choose from, and all had a very different impact in some ways and very similar in others. But I'm coming up to the first year anniversary of my most recent diagnosis and I'm naturally in that phase of looking back and reflecting, so here goes.... Dear Audrey  Do you remember last year when you were diagnosed? Of course you do because you were absolutely furious! Not sure who or what with, but mostly because you had started to feel like yourself again, stronger in body and mind and bang that was blown up in your face. That anger will go in time, replaced by the stubbornness that gets you through it. December is such a dark time to deal with dark thoughts but you put up the tree early and brought some fairy lights into the shadows and maybe that's a spot on analogy for this year.  Because although its been a dark

Day 3. Be kind, always.

Day 3 Find a quotation that inspires or provokes you. I often use quotes in my blog and this is probably the one that I've used more than any other. Is it the cleverest or most creative; no. But it's the one I'm often moved to quote in relation to something I've written. If I'm honest it's really deeply personal in that often outwardly I'm getting on with my life but inwardly it's actually quite tough. And kindness can be the difference between coping or not. So many conditions are like breast cancer, their impact is hidden from the outside world, but nonetheless the impact is unavoidable. Perhaps the quote reminds us in our fast paced world there's little room for the time it takes to recover from illness, to grieve, to come to terms with a change in our lives or whatever has thrown us off kilter.  Its the reminder too that none of us are immune to trauma. And that kindness is the most important component of a decent society. My experience of

Day 2: one true word

Day 2 #HAWMC The prompt today is to describe how I write. It's really not planned or routine but it's when I have the desire to write, the story I want to tell formulating and the time to spill it out. I can't squeeze it out to plan or force it like ketchup from a bottle in a big splurge. It's like it runs around my head like mouse running around a maze and then suddenly goes I've got it ; t he route out on to the page. I do edit at the time and get the opinion of my husba nd before I publish . I usually delete the worst rants if I'm upset about something and publish the more measured version! But most importantly , it has to be true to how i feel. Occasionally it's a poem I'm moved to write and that's generally when I'm very moved by something. I really can't force that but I do go to a creative writing class where we visit galleries and write in response to the art. I know that can prompt my best writing . It s a great stimulu