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! 

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. 

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....