Sunday, 26 November 2017

Even if your voice shakes

In the last month or so we have seen more references to the abuse of power than has perhaps ever been seen before in my lifetime. The #metoo response to the Harvey Weinstein revelations has shown the extent of sexual harassment and abuse in our modern society. If you have read any of these posts you will,like me, have likely been deeply affected. Alongside that the shocking statistic that in just one day in the UK this year 95 women and 90 children were turned away from refuge. This is an endemic problem which we aren't dealing with.
I have found myself disturbed and upset and yet honestly I was not surprised. I too had experience something aged 18 and never reported it. At the time I saw it as a sleazy move that I managed to escape from. I learned from then how to avoid a similar situation with that individual. I didn’t recognise it as an abuse of power at the time but it was. I didn’t realise either that I was unlikely to be the only one, I just wondered what I had done to invite it. I told no one, I accepted it as a norm and adapted. My self confidence was dented and my voice was repressed and I was a bit more cautious. 
It was a similar feeling that I had had when I went to an older male GP when I was in my early teens. I had a rotten cough that wouldn’t go after a viral flu type illness. I felt really unwell and my parents had encouraged me to see the GP as I wasn’t improving. I went on my own and when I told my story he shouted at me and said I had to have patience to get better and told me not to waste his time. I was appalled, scared and left with an overwhelming sense of shame. I internalised that as well as my fault and it gave me a fear of doctors for many years. Again I did not see it as an abuse of power, I felt I had done something wrong. Again I told no one. When I was diagnosed with asthma, 20 years later I did think of that day. Not only a bully but a clinician who failed to diagnose me properly. The abuse of power comes in many forms.
Years later when I was being followed up after having treatment for breast cancer, I challenged the local system which required you to strip to the waist and wait till the doctor came around the screen to do the consultation. It was never the same doctor. I have rarely felt so exposed and vulnerable. So I said can I keep my clothes on as I want to ask a question and don’t feel comfortable doing that half dressed. The nursing assistant left the room in a flourish. The next time the door opened it was the consultant. I hadn’t seen a consultant since my treatment years earlier. "What is it you want" she said to me and I flinched and momentarily forgot. But I was a bit older then and drew up my courage, channeled my anger and asked my question. I remember actually feeling a bit scared and wondered why I had bothered to have the temerity to challenge the system. All of these happened within a healthcare setting.
 Yes even the first one when I was a student nurse, the man was a charge nurse. Such is the power of hierarchy in these settings. Now I have had many many good interactions and excellent care since then but I am also much more confident, knowledgeable and assertive now.I’m certain that has helped me manage to negotiate a better balance of power in relationship with the professionals I have met since then as well as the fact I can speak their language. 
Over the last almost 20 years I have been in roles where I have supported the voice of those with lived experience to influence the improvement of services within both public services and from a third sector base. This is all about re-balancing power in healthcare. But I still hear people involved in delivering and improving services say it’s so hard involving people, they don’t want "the usual suspects". Its oft repeated that they need to involve hard to reach ( seldom heard or hard to hear is more accurate) groups but don’t know how and so on and so on. It’s such a familiar refrain. But is it really hard or is it just too much of a threat to the power base of the current system? Knowledge of how to involve people will not be enough to change culture, for the culture to change in any situation where the power is imbalanced, there needs to be a shared will to do this.
Are we there yet? I’m not sure but this is a time of change and disruption and we need to take the opportunity to challenge the abuse of power wherever it exists and the culture that perpetuates it. I know from my own experience that it will be hard but not to give in. That’s what Ive learned eventually, don’t give in.....

Wednesday, 25 October 2017

Running in my dreams

I had a dream that I was running last night. Now don’t misunderstand me, it wasn’t running along the beach at St Andrews,  chariots of fire style or getting to the finishing line in a race, no it was just ordinary running, like for the bus maybe. Or perhaps just for the hell of it to shake off some cobwebs or after the dog on the beach ( usually saying give the dog it’s ball back, Cara!) . For that moment I could run with the wind in my hair, smiling, enjoying the rush. Later in the dream I played paldies or hopscotch,if you’re not from round here. I was jumping up and down joyfully, feeling a child’s delight in the activity. Then a friend reminded me from an adult place to remember I wasn’t supposed to do any impact activity and I landed with a thud. Out of the dream back to reality. Running is in the past for me as is jumping on pavements to some long forgotten rhyme. Walking slowly is my current status and whilst I’m grateful still to do that, I’m still mortified that snails overtake me on a regular basis. I tut at myself or curse under my breath when I walk feeling I’m on a conveyor belt that’s going backwards. The stick is my life line to be able to walk any disctance but in spite of that I regularly leave it behind. Then curse some more till I retrieve it. I confess now these are less than mindful occasions. 
So for a moment in the dream it was fun, carefree. Then I woke up. What it reminded me of was the dreams I’ve been having about my Mum. They vary but generally I realise she’s still alive and I worry about how she’s managing. I feel guilty of course that I hadn’t realised and it’s lovely to see her and a lightness returns for a moment. Then I wake up. Loss crushes me again for a time and then of course I move on, I have to. 
Processing loss is not a tidy affair I’ve learned. Its not a linear process that you emerge from newly wise. Nor is it a neat circle that you travel round, from anger to denial to mourning to acceptance all tied up in a fancy bow. Nope, it’s messy, complex, confusing, alarming and maybe sometimes if you are lucky, comforting. But it changes and I know this will too as I adjust to my reduced mobility.

I’m thinking it’s time to bring back my « reasons to be cheerful » part of my blog from before. So this blogs reason to be cheerful is I’m enjoying swimming and my new physio belt is helping me jog/pedal in the water and it’s fun. Well there’s a nice twist to the tale. So if you see me don’t laugh, just know I’m running in my dreams. 

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 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? 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?