Monday, 5 December 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 acceptance of my new reality, a painful back and slight limp at times and an increase in breathlessness when I'm overtired. And a slow return to strength which is feeling more sustainable. And a gradual re-prioritising has shaped my year. I've had really wonderful family and friends time this year as well as been involved with some really great work  that I've enjoyed immensely. I've focused on what brings me joy and realised that's not only social time it's also some of the work I do.
If I have one word to symbolise this year it's been connection. Connection to people I love has been a vital, life-giving, force for me. I've found joy in so many things, from dinners round the table, to singing together, to watching sunsets on a beautiful balcony, to fireworks set to music, to a family treat to Rome; it's been wonderful. I'm deeply grateful for those times and how precious they are.


Internally too it's about connection as I'm probably more connected to what's important to me than ever before. I'm trusting myself to follow what's right and letting go of controlling the outcomes of this life story. I'm navigating the waves of the storm more confidently than ever before. I admit to getting sea-sick now and again and weary too but strangely enough I'm not scared.
Finally I'm accepting the words of The Anthem by Leonard Cohen, that wonderful story teller, who I've grieved for this year.
"Ring the bell that still can ring, forget your perfect offering, there is a crack in everything.....it's how the light gets in."

Saturday, 19 November 2016

Day 18 Cancers a gift cliche...bo*****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 be limping and in pain a bit too but I will savouring every moment. If cancer has been any kind of gift for me, thats it. 

Thursday, 17 November 2016

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 Pacific Ocean
Like stars they remind me
of our powerlessness

Flip it up again
I want to call
get us back to how I
know the world to be
Can anyone hear me?

This isn't how I believed it to be
I'm tied to another image
I'm clinging to my own map
But the universal corrective
has another plan

Monday, 14 November 2016

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 service. This experience is what took me into health advocacy and I'd love to say it's very different now but there's still a long way to go too often. However as I have documented in this blog before I've had excellent surgical care and been treated with real compassion and that helps so much. But a key question for me is do I feel a partner in my care? The truth is that's depends very much on the individual Im dealing with. The process of the multidisciplinary meeting for breast cancer patients as a means to plan care and treatment has always been seen as the gold standard of care. But there's a key person missing; it's me. If we are truly to practice person-centred care and also realistic medicine then the i need to be at that table.
So for me it's less about individuals as they can change with the right support often; the real issue is the system and the culture. 

Thursday, 10 November 2016

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 had to worry about having to pay for my care. This year alone I've had reconstructive surgery for breast cancer which is so good that a cardiologist I was referred to said she would not have known if had a mastectomy. I've had that care and treatment absolutely free at the point of need simply based on that being the treatment i chose to have when I was diagnosed again with breast cancer.
But for my peers in the US, they will only get this care if they are adequately insured. I cannot imagine the distress people are facing not knowing if their care will be funded in the future. It's literally the difference for some between living or dying. Like this 32 year old Mum with advanced breast cancer I read about "My greatest concern is that [health insurance] will go back to what it was before Obamacare, and that Trump will unravel all the progress," the Bucks County resident said on Wednesday. "If my supplement is dropped, I can't afford treatment and I die. I'm afraid this will give me even less time than I already have."
I write this in sisterhood and drawing awareness of the very real and human impact of electing a president who has said the previously unsayable and shown an astounding lack of the milk of human kindness. These women are just one example of the many people: the minority ethnic groups, the vulnerable, the disabled, the gay community and indeed all women he has dishonoured through his actions and words, who need all of us to stand beside them in whatever way possible and help them stand up for their rights. 
This blog is for them, I hope that compassion will prevail but I fear that has been the first casualty of this extraordinary time. But all of us can do what we can and as Gandhi said we "must be the change you want to see in the world".
 

Monday, 7 November 2016

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 blog.
The blog was my boundary for the experience. I was honest but I didn't tell every detail of my life. But it did let me be more fully myself and although my intention was that it might help others, I know it helped me too. It helped me process the expereince, helped me face my fears and look into the shadows and it allowed the people close to me to understand how to support me. My tendency to say "I'm fine" even when I was struggling meant that people didn't know when or if to help. My blog went beyond I'm fine to exposing a deeper truth.
My experience has really shaped my thinking as an advocate. I firmly believe that listening and responding to the voice of lived experience can help to transform the way services are run and to shape priorities for organisations like cancer charities too. Through my blog I've been able to shine a light where I can on services by telling my story. There's a long way to go to bridge the gap between policy and practice and the more we hear the real stories of experience the more we can understand how to make true partnership in care-which I believe is essential- a reality. 

Sunday, 6 November 2016

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 to throughout the process of the need for care at all ages and stages. Too often it seems people are listening to respond rather than to really hear what's being said; including the music behind the words themselves. To truly listen is a superpower for care professionals.
But let's be honest there's even more at stake here. We live in troubled times across our world, where opinion seems increasingly polarised, which pushes us to choose a side, to solidify our beliefs rather than to remain open to listening and questioning. But that process of polarising means we hear each other less and increase the process of "othering" and in so doing this decreases compassion. The definition of  compassion is to be alongside someone in their pain, to bear witness and with a desire to alleviate their suffering. Divisions in society reduce compassion and consequently the stability of our communities and nations. I know I'm not alone in being deeply worried by this time which seems to threaten so much. I'm trying not to catastrophise but if I'm very honest I'm fearful of the future.
So the super power I would wish for is not just listening but compassionate listening: listening with compassion to each other, and not just to the words that are spoken but to the fears and hopes that's those words represent. And to truly respond with compassion. It's a big ask I know but if we don't do that, what's the alternative?