Saturday, 18 March 2017

Not a bit of bother



 
Christmas 2016

I can honestly say this has been a week like no other. This is the week my mother died.
Just writing that feels like a punch in the gut.
In February at the time of her birthday ( and mine) she fell ill with flu and although she tried her hardest she couldn't overcome its effects. After 5 weeks she slept peacefully away with my sister and I by her side. That's a huge comfort in the midst of our grief. She was 89 on the birthday we never got to celebrate. A good long life that had been free from illness until Alzheimer's robbed her memories but not her character. Even when she found comfort and safety moving to a care home, she was valued there for her quick brain ( the domino and quiz maestro) as well as her quick wit. I described her as the queen of the cashmere cardigan and the one liner and she carried both off well. We plan a good celebration of her life and will toast her with her preferred tipple of a wee jungle juice ( don't ask!).
It's been a strange week when I've at times wanted to pull the covers over my head. Also I've engaged with work which was mostly a welcome distraction from the deep sadness that has moved in not just to my emotions but somehow I can feel it in my body too. I say mostly because I recognised that however distracting it is, there is a lens I'm seeing the work through just now and sometimes the clarity it brings triggers unexpected emotions. On one occasion it was anger so encompassing I couldn't hold back. 

" Language exerts hidden powers, like the moon on the tide" Rita Mae Brown 

It was a discussion on a familiar refrain just now, the changing demographic to an aging population who are a burden for our services. The word burden was my trigger. I pointed out- maybe a bit sharply to be honest- that there was a need for this language of burden to be changed. And this is a message for our media as well as leaders of public services -maybe even to ourselves ?
Of course it was my own Mum who came to mind. She had had one day in hospital since my sister and I were born and every part of the social care she received to support her, as Alzheimer's left her more vulnerable, she paid for herself out of very hard earned savings. She brought us up, supported care of her grandchildren too when she could, she worked, she paid taxes and national insurance and she was NOT a burden to health or social care services ever.
On the other hand I've had breast cancer three times in my life, had lots of surgery, medication, radiotherapy -the works. I've survived the first diagnosis of breast cancer for over 20 years, long enough for it to come back. Years ago that would not have happened, so maybe that makes me more of a burden than anyone? But wait cancer survivors are heroes aren't they? Maybe it's just as we're deemed old we can be described as burdens?
Much of my work is focused on transforming health and social care services and to help make them fit for the future. My urgent ask of us all is we stop referring to people as burdens and start seeing that they are just you and me, doing our best, paying our dues and worthy of the care we would all wish for ourselves and those we love, whoever they are, and however old they are. We will never change the culture of care if we don't change the language, and we must start by banishing the word burden.
And final word will be with my Mum who had a habit of ironically using the phrase "I'm not a bit of bother" which usually resulted in a rolling of the eyes, often mine if I'm honest! But do you know what when it comes to her needs being met by society she really wasn't a bit of bother and she's not alone in that. She was a Sister, a Friend, an Aunty, a Wife, a Daughter, a Nana, a Great-Grandma,a Mother-in-law and a Mum and not a bit of bother, nor indeed a burden.

Sunday, 22 January 2017

I burn but I am not consumed



 
My outfit for the Women's March in Edinburgh
By the end of the day of January 20, Inauguration Day, I recognised that the tightness in my chest and overwhelming feeling was caused by a visceral, overpowering fear. Of course I've been afraid before. I'm a mother; I've felt the fear of my children being hurt or lost or having their hearts broken and the million everyday fears that being a parent can throw up. I've also personally had the fear of waiting for results of tests for cancer and the even worse times when those fears are confirmed by the words "you have cancer". The worst fear for me with each diagnosis of cancer is the fear of hurting and not being there for my family and friends and especially for my children. So fear and I are old, maybe not friends, but acquaintances. I've learned to rationalise and help to find a way through those fears, even when some of them visit me in the middle of the night. And I recognise that one way I compensate is to savour every minute with those I love and store memories like precious gems tucked in my heart.

But this fear was a different one.I couldn't find a way to rationalise or minimise. I think I've only felt that similar fear when my children were very young and the Chernobyl nuclear disaster was unfolding. I was in the car with the radio on and I learned that there was a very real concern that day that the nuclear reactor was going to fully melt down, causing a disaster which would impact far and wide. I remember shaking and noticing the feeling deep in my core of an overwhelming fear. All my instincts told me this was really serious and there was absolutely nothing I could do to protect my children or my wider family? In that moment I felt too the the terror of families in close proximity; living a grim nightmare. Thirty years later I still remember that feeling.

So when I felt it again after the inauguration speech by Donald Trump I recognised it was the deep and visceral fear triggered by a sense of powerlessness and of impending doom. It was hearing the phrase "America First" that triggered it; the refrain and its delivery seemed to me resonant of fascism, just as calling out "Britain First" did when Jo Cox was murdered.  I felt sure the murder would stop us in our tracks, make us pull back. But no, instead we've witnessed a normalisation of beliefs that I find chilling.

Since the election of Trump I have been shocked, worried, completely bewildered but it wasn't until now that the reality of the shift to the far right seemed real. And I'm so afraid of the consequences.

It's why for me joining the Women's March movement felt so important. Seeing the energy, determination and love that was expressed I felt a sense of not just sisterhood but also of hope. The range of  ages there was especially encouraging......there is a new generation who will be prepared to rise up. 
Thank goodness for that because we are going to need them. I absolutely believe as Gandhi said that the path of truth and love always wins but it may be that we have some hard lessons to learn on the way.

What we can do meantime is be the change we want to see and be willing always to speak the truth to power. And we need to ensure that love does indeed trump hate. 
I leave the last word with Karine Polwart  who reminds us in her song for the occasion of the Inauguration of Donald Trump that his reign will pass and the rocks of the Isle of Lewis, the place of his mothers birth will remain untouched-they will burn but they will not be consumed.
http://www.bbc.co.uk/programmes/p04q5cmf

Monday, 2 January 2017

If you want to touch the future-touch a life.


If you want to touch the past, touch a rock. If you want to touch the present, touch a flower. If you want to touch the future, touch a life. (unknown author)


I know I'm not alone in being pleased to say goodbye to 2016. Global politics have had their impact, its true and I will come back to that, but that's not been the main story for me. I started this year having my breast amputated ( I know a mastectomy is the medical term but I'm using this expression as I feel it describes more honestly the impact). I chose to have a reconstruction rather than live an imbalanced daily reminder of the cancer returning. There have been moments when I wondered if I made the right choice but of course now that I'm much stronger I'm grateful for a more normal appearance. As the new year approaches I can feel the optimism that the opportunity to close a door on this experience offers and I welcome that.
There's a risk I do my usual and start 2017 full pelt but I'm trying to avoid that. This year passing has made me take the world at a slower pace and although frustrating at times, I know I've also quite enjoyed it. My promise to myself is to maintain not only that but also the permission I gave myself in this my sixtieth year to take every opportunity to have fun and time with people I love.I'm determined to keep that going too.
But in truth I've also been blindsided by the global political context and a trend that scares me. I'm still trying to decide how I can respond to it. I see fully that if we want a kinder world we need to be kinder ourselves and that's something I've really been working on, even thinking about food choices and so on. Mindfulness offers an approach to loving kindness that I've found restorative and of course many forms of prayer do that too. But it's the question of what action can I take that challenges me.
The answer to a kinder,less isolated world can't be about politics; although politicians can show leadership and enact the right policies to create the right conditions and I will do my best to influence this. The answer lies with us all so I will continue to volunteer with Contact the Elderly and really recommend that as a way to connect. I know it's also just reaching out a bit more generally in my life and community as well as supporting great organisations like Social Bite in changing the lives of homeless people. Another thing I'm keen to support is this campaign by the UN http://refugeesmigrants.un.org/together. The mantra of respect, safety and dignity for all is a powerful message to spread.
So this year I will hopefully be getting stronger and healthier, doing things with people I love and also doing my best to make the difference I can. And hoping that my fears for 2017 prove unfounded.
Finally here's a poem I wrote on how 2016 affected me. Of course I can't tip the world back up but I  do believe all of us have a role in shaping how we want it to look. 2017 I will be working on the next verse of that poem, I do hope it can be an optimistic one.

 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
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, 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
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.