Tuesday, 12 September 2017

The one when its not cancer but still a bit shit!

Last time I felt as shocked as I did last Monday, was when I was first diagnosed with breast cancer. Even as you think you are preparing yourself for difficult news, nonetheless it's never quite enough. And the thing for me is, I was still hoping that something conservative as a treatment option could make a difference to my back and my walking. You know maybe if a kept up with the Pilates classes,if those exercises the physio gave me could work and that I would actually do them four times a day,perhaps a wee steroid injection? Or even a telling off to lose more weight and get to the gym even was a possibility in my back pocket. 
What the neurosurgeon did actually say after a brief examination and looking at my scan was, that surgery could help to take away the calicified prolapse that was pressing on my spinal cord at T11/12 but it carried a 50% risk of spinal damage which would leave me paralysed and without bowel or bladder function. Well  "f***  that" was my first thought. So can I have physio or a steroid injection instead? No they won't help was the reply. What are my other options? What happens if I do nothing I asked; armed with my realistic medicine key questions.
 Nothing else would change things I was told and as I had been getting worse, that was likely to continue. No idea how long or fast but surgery will only prevent further damage, not undo any harm already done. There is a window of opportunity, if such odds could be seen as any kind of opportunity. 
I looked everywhere but I was presented with no silver lining. Not so much a rock and hard place as trapped in rocks as far as the eye could see. There was no push to have surgery and to be honest a real kindness in the consultation but clearly a desire for me to understand the reality. A Pilates class on a Tuesday night wasn't going to fix this I finally had to accept. Thankfully my husband had come with me as I'm sure afterwards I would have doubted such a message. 
I was hit with shock that knocked me over like an unexpected wave. We left the clinic in a fog of fear with a promise to be seen anytime so we could ask more questions.
Since then I have twisted and turned in my thinking, crazy to have surgery, or crazy not to consider it? Should I stop working or keep going? Should I get a stick or will it be a wheelchair I will need? Am I safe to go out, should I get advice on exercises I can do to keep me strong? And on and on and on....
 I've been getting advice from other trusted people too , so slowly my fear has settled a bit and I'm trying to find out as much as I can, look at a second opinion and basically question rather than just take the offer of a fairly devastating and one dimensional approach. I helped to write the self management strategy in Scotland and my role is in part to empower others to do what they can to enable their wellbeing and ensure they are listened to. That's the world I represent and as I love to live my life with irony I'm also, having just been diagnosed with a spinal issue, working with the Neurological programme at the Alliance to raise the voice of the Neurological community. This level of lived experience I would prefer to have avoided but as ever I will use it to deepen my understanding and influence change where I can, whilst trying to find my way through this and live my life.

Meantime I've bought a fancy stick to help when I'm out and about as I've been feeling a bit vulnerable in crowds and busy stations. I plan to channel my inner Mary Fleming ( aka my Mum) who used her stick to get attention and as a license to get away with anything to be honest. So yes, watch this space! 

Saturday, 26 August 2017

no more war...



So this week I had the confimation that the back and leg pain I’ve been dealing with of late is the result of pressure on my spine and needs more investigation urgently. No one seems to think its related to previous cancer diagnoses but its plummeted me back into the world of scans, appointments and uncertainty. I’m an old hand at this game of course so I’ve got those wonder woman pants looked out, ready to tackle what’s ahead. 
I’ve been asking people- who I thought might know- what should I do? Do I lie about on a chaise longue? Or should I be keeping as active as I can but try not to make things worse? I’ve stopped the exercises from the physio I was going to until we have more detail but I’m honestly in the dark as to how to approach this. 
I am drawn to contrast this with a breast cancer diagnosis when frankly most of us get a barrage of well intended advice on pretty much everything. And then of course we are told relentlessly to fight it. Every war analogy dusted off so much so that we on the receiving end, run for the armour.  The cancer heroes aren’t allowed to grieve or look sick, or get angry or feel hellish, or get scared. No the heroes are the ones who keep working, who run or walk marathons in decorated bras ( all through the night too as if a day time walk wasnt enough!), who make Sunday dinner in immaculate houses, who shield their families and friends from their suffering and take up tai chi in their spare time. And if we’re not heroes it feels like there’s a subtle undercurrent of judgement. And if the cancer returns, well then we get to be guilty too. Didn't fight hard enough, juice enough, exercise enough, ate too much refined sugar, gluten,dairy, drank too much prosecco....you know how it goes.
How I wish I could just wave the white flag and say, hang on a minute I’m a pacifist. I don't do war. I do want instead to be kind to myself, to encourage my wellbeing, to take care of my emotions, to rest as well as to exercise, to find joy in life, to nurture gratitude, to take time for people I love and not give all my energy to fighting.
So no war is being waged on my fragile spine but magic solutions will be received with gratitude. In the meantime there is naproxen, my favourite chair and lots to keep my head busy. And of course the lovely man who I married 40 years ago this week who is being a hero. I’m a lucky woman. 




Tuesday, 18 July 2017

But what if?....living with breast cancer

It's almost 10 years since I took up the post of Director for Scotland of Breakthrough Breast Cancer ( it's since merged to become Breast Cancer Now). My role was to set up the charity in Scotland and I found myself very drawn to the role. It was a huge decision to apply not least because it meant a long commute but I felt compelled to do it. I'm sure my own diagnosis with breast cancer almost 14 years previously was linked to the strong pull; unfinished business. But it also made me, uncharacteristically, superstitious. “What if it comes back if I take this job” I asked a nursing friend. “Well it might come back, but it won't be because you took this job” was his wise reply. It was the reply I needed to make the move. 
I dived into that role with energy, enthusiasm and a deep sense of purpose. I even embraced the wearing of pink at times, something of a challenge to a wardrobe that tended to the black side of the colour spectrum! My background was nursing, where I cared for people affected by breast cancer, I had taught breast awareness and I had researched knowledge of breast awareness for the thesis in my Masters degree in Public Health.So I knew a fair amount but wanted to learn more about the complexity of the disease called breast cancer. 
I admit some of what I learned was reassuring. Social research on people after a cancer diagnosis highlighted that others had experienced the disappearance of friends, as I had. It wasn't just me. I sighed deeply when I heard this. I'd carried this as a kind of shame. Had I been too needy? Maybe I was just boring when I was ill? Maybe too self absorbed? I realized it had taken up too much energy at a time when energy was a premium. I regularly advise people to be aware of this phenomenon and not take it personally but instead be open to those people who get alongside you who you didn't expect to. And to bask in the warmth of their friendship instead. I know you never forget the people who travel with you. Those who show their care and love in many ways are forever connected to your belief in the goodness of others. 
I can still picture the lecture theater I was in when I learned about the risk of late recurrence. At the time it was a phenomena that was rarely discussed. In this lecture we learned about late recurrence, a particular trend in those with oestrogen positive tumours. I felt the hairs rise on the back of my neck. I found out that day that shivers can run down your spine. I didn't hear much more as it was then I realized that 14 years on did not mean I was safe. 

So when I was diagnosed a couple of years later with a local recurrence I was less surprised than I would have been but honestly I was not less shocked. And then four years after that when it recurred locally again- I wasn't just surprised- I was furious! So here I am one and a half years later, trying still to put it behind me. I had just begun to feel stronger when I was diagnosed with breast cancer for the third time. I haven't got back to that yet. And the back pain I have struggled with for several years is now much more acute. I'm so weary of it. I've tried so many things to help so this time I spoke to the GP and the result is that I'm to have an MRI of my back. I'm sure it's not to do with cancer but a worsening of what is now a long term condition, at least that's what I told the GP. I do believe that but now that particular can of worms is being prized open, I will be glad to have that confirmed. Years ago,after a follow up appointment at the breast clinic my husband once said, “it never goes away does it?” He was right, so here I am 23 years after my first diagnosis awaiting an MRI on my back, telling myself it's arthritic not cancerous while all the time there is a quiet, insistent voice in my ear saying “but what if?” ....

Thursday, 29 June 2017

The new radicalism for our time?

                              Compassion is the radicalism of our time. Dalia Lama


I've written many blogs in my head of late but the truth is i haven't written them down. They're hard to find the words for , the feelings too complex or too deeply personal to share. There is no doubt grieving for my Mum has had different shapes and impacts and I’m doing my best to accept that. There's a visceral quality to loss that's beyond words. What I also recognise is that there is part of me grieving for more settled and gentler times in our world and nation too. It feels for the last year that we've been in different, less tolerant times. 
I suspect  it's a time in history I'm struggling with. Maybe it is the dying throws of a society that cares more for money or things than people, and that the dark underbelly of global capitalism is exposed at last? What could be more emblematic of the failures of neoliberal philosophy than the Grenfell Tower fire and the unrest and distress it has resulted in. Ben Okri in his poem expresses this reality and the anger many feel so eloquently " If you want to see how the poor die,come see Grenfell Tower"
Perhaps it is the beginning of something else? I'm hoping that alongside these events we are seeing an awakening that's creating a counter movement that calls for change and speaks of compassion for others, whoever they are. 
Alongside living with the loss in my own life and in the churn in the external world I've also been trying to deepen my mindfulness practice. Highly charged political times can capture me in a very non-mindful place so in the run up to this election I was practicing a loving kindness meditation with some friends. We each found ourselves thinking of politicians who are on our daily screens. Those politicians carry our expectations, our woes, our ideals, our anger, our distrust, our "othering" of them so we can stop thinking of them as people but merely as the butts of our intolerance and sometimes even our deification which is often just as destructive. We expect them to behave with authenticity whilst coping with daily abuse in mainstream media and even more so in social media. Perhaps it's not surprising that each of us had found ourselves sending loving kindness meditation to not only those we would vote for but also the very people who we were voting against; we saw their need for compassion too.

As the results of the election came in, I felt caught in a maelstrom of emotion, which was not at all mindful nor indeed compassionate at times! But I was also very aware of the viciousness of the political environment and the impact on those who work in it. The politicians and their staff who gained or lost seats are embracing a very different future have a stressful time of transition ahead. Yes the knives will get sharpened for those who have created this perilous situation, and they should and must be held accountable, but are we not all also complicit to some extent in the system that led to this flawed democracy? The system of perpetuating and fostering anger and tribalism, the system that judges and criticises and seeks only to find fault, the system that doesn't listen or reflect but merely pronounces. This is a critical society and it's deeply ingrained in our culture. It feels like a poison.
Could we now be ready to call for change not only in the dreadful inequalities in our nations but as well for more compassion instead of criticism and foster the difference that emerges?  If we want our nations to change we each of us have a role to play. Nursing hatred will never create a better environment.The Dali Lama has said compassion is the new radicalism so we all have the power to be radical. 
We can create a different narrative and a collective vision of a society based on compassion and human rights where every voice is valued and every person is equal. What this recent election has demonstrated is that more people are open to change, we are no longer all attached to a neo-liberal philosophy. And next time we get the chance to vote-and it seems we might sooner rather than later- we need to be ready with a powerful narrative for a better society.To show there is another approach and help people see that. I believe we can and and that we must start now...


Sunday, 25 June 2017

Knowing what matters

She was the Queen of; 
the cashmere cardi,
the crossword puzzle,
the weekly quiz,
the one liner

She'd forgotten to eat
But knew us still
and knew the staff,
knew her new friends
She looked out for them

She'd forgotten the prime minster,
where had been home,
if she was married,
what day it was
But she knew what mattered

What mattered to her was;
not going to hospital,
staying in her home,
being with her carers,
being with her family

What mattered to her carers,
was seeing her happy,
it was sharing a joke,
or a tale of children,
it was to feel like family

She'd saved for that rainy day
and paid dearly for the care 
that created the rainbow
of kindness, fun, friendship 
and love

In turn she loved them back
and they grieved, 
shed tears as we did
when she finally gave up
her fragile grasp on life

So minimum wages and no sick pay
doesn't express the gratitude we felt
Carers with zero hours contracts 
proffered with zero compassion
deserve so much better 

She was the Queen of the family
she understood what matters
Do we?





Saturday, 10 June 2017

I had a new prime minister...

I had a new prime minister

I'd gone out 
just for the morning
And heard it on the news
Is this 
taking back control?

Be glad its a woman-
Remember Thatcher?
I need to know 
what she'll do
not her gender

She wants to unite her country
this disunited kingdom
Poverty and place
Power and privilege 
Are the hard borders of division 

A referendum
I didn't vote for
A result I didn't vote for
A prime minster
I didn't vote for

I have a new prime minister
Who will make me less European 
Powerless in my capital city where
75% of us voted 
to stay in the heart of Europe

Since June 24 I've grieved
I've puzzled
I've tried to understand
I've looked everywhere 
for silver linings

She's spoken of  governing
for all not just the privileged
So I'm clinging to some wreckage of my hope   
for signs that my fear is unfounded

And now ten months on
there's an angst
that is never far away
The linings are not silver 
just tarnished by lies

Now is not the time she said
Not in the best interest of the people
But then suddenly it is the time
for an election we're told
In whose best interest now?

I'm not a vicars daughter
I'm a miners daughter 
And I know deceit
I'm skilled at that
I know  whose interest it's in 
And it's not ours 

An election designed to stop dissent
Is not an election 
It's a power grab
It's a cynical perversion 
Of a democracy on its knees

And now the votes are counted
A parliament hung by duplicity 
A coalition of distrust
A country shaken, vulnerable
Our call for change still drowned out

But the call is louder now
The pressure cooker 
Simmering with quiet anger
The voices more confident 
Plans more ambitious 

I had a new prime minister 
But not for long





Wednesday, 5 April 2017

Tales of a sixty year old orphan


I recognise in me a tendency to expect that just because I understand the process of grief on an intellectual level that somehow gives me a dispensation from going through the worst of it. The bad news is it doesn't. There isn't a shortcut or a get out of jail free card, just the softening of the gratitude for a long life well lived and well loved. But grief still waits in unexpected places. Sometimes it's a slight catch in the throat when you see something and think, "Mum would love that". It can also be a repeat of a much used phrase like "I'm not a bit of bother" that doesn't just cause a tightness of sadness but thankfully also evokes a smile or even a laugh.
Yesterday it was a fruit jelly that did it. Now the family and the staff at the care home will understand this, in recent years it was a particular favourite of Mum's. It reaches back into childhood memories too. Although to be true to them it would have to be the carnation milk jelly ( nutritionists avert your eyes) with some tinned mandarins. Admit it if you're of the baby boomer generation, your mouth is watering now, isn't it?
But this wasn't any fruit jelly it was an M&S jelly with raspberries. As I had the first spoonful I felt a tug of grief that felt like a punch in stomach. So much so I stood up and leaned over the balcony to breathe through it, like a labour pain. Perhaps it makes sense that the pain of giving birth should be echoed in the pain of accepting death? Fortunately I could just give in to the tears and I do admit the sadness felt newly raw for a time. But a walk on the beach with Cara lifted me a little.
Today a small robin following us on a walk was more of a warm reminder as Mum loved robins. It helped me feel connected to her rather than to loss. I know in time these moments willl outweigh the others. Until then the kindness of friends and the love of family is hugely consoling. There is a unique quality to grieving when it comes at the end of a long life. In many ways it's recognising the abilities and real talent of next the generation of our family as well as experiencing and witnessing their care, compassion and wisdom. This creates a sense not just of comfort and pride but of continuance too. My sister reminded me of this song by Nancy Griffith as we acknowledged we were 60+ year old orphans....It closes with the line we are all one family, a reassuring message of how those we grieve for live on in us all. May have to draw the line at jungle juice though....

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