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?” ....

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...

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?

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

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....

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.

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