Sunday, 31 December 2017

A Hogmanay Poem

A moon, almost full
shines it’s glory
O’er Auld Reekie
this Hogmanay 

A grainy expectation,
a city holding
her breath 
for the bells

2017 ye were
a richt nichtmare
fur so mony
o’ us 

2018 aye hopeful
we share oor wishes
wi a shrug
whit can we dae?

Ma resolution is 
take dae whit a’ can
tae be a bit kinder in life
Oh aye, an tae ma sel’! 

Guan yersel
in whatever you’re
resolutions are this Hogmanay 

And cross we’r fingers for better times

Tuesday, 19 December 2017

Stories we tell ourselves at Christmas

I’ve never been one for those letters at Christmas generally. Sometimes I’ve shared new addresses with some news or a special event like my sons wedding but avoided the "Tristan got straight A’s in his exams" type annual note accompanying the Christmas card. I’ve always been a tad cynical about the one sided view of life because rarely do we share the hard times on these notes. We're less honest maybe about the family driving us to drink, of working too hard, of exams bombed, of needing to go up a dress size or whatever else keeps us awake at night. Like every falsely glittered Christmas advert we want to enhance the positives in our lives and hide the bulging credit card behind the curtain of our own denial. 
But this has been a hard year and I found myself thinking if I shared the news of the year it would be a great way to kill the Christmas spirit and so of course I haven’t. But I have learned over the years that this blog is one of my ways to process my own feelings and so here I am wanting to write about it nonetheless.
As I have described in earlier blogs, my Mum, Mary, died this year. Her illness started in February and after a long struggle she died in March with my sister and I at her side. We were so relieved that she was peaceful and spared a long slow decline into Alzheimer’s. But she’s also left a real gap which feels wider now as Christmas approaches. All 61 years of my life I’ve spent some time around Christmas with her. Memorable occasions when with the Christmas hat worn at a jaunty angle she would answer all the quiz questions, even the ones not hers. The days when the consumption of jungle juice before dinner was prepared meant the timings might be a bit off. The mince pies that no one else can make nearly as well, all remembered with an ache of sadness and  the warmth of happy times recalled. The fretting about whether she had missed anyone out and the tendency to a Christmas low mood and anxiety, a legacy from childhood, were also a feature if I’m honest but this year even that feels a loss- although one I will cope with better and try not to replicate! I know she will be close to us in many ways this Christmas, never far from our hearts and our stories.
Sharing joy
This year’s other trauma for me has been the diagnosis of a spinal problem. A recent second opinion confirmed that it’s a bony growth on my spine, pressing on my spinal cord, too risky to remove just now, especially while I still have some mobility. No one can tell me if and how it will develop so for the moment I need to stay in the moment, build condition if I can, manage pain and live the life I can. So no more moonwalks or west highland walking for me, no pushing through pain but instead permission to slouch from the physio and maybe a bit more putting my feet up! It’s hard to put any kind of positive spin on it but I am grateful my Mum doesn’t have this particular development to worry about. 

These times remind us to treasure what’s good and time with my family over Christmas will be so very special.I will treasure every moment, I promise. And on the bright side, this year’s diagnosis might get me out of peeling the sprouts? Wishing you all you wish yourself this festive period. And as for 2018 that’s a whole other story...

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?” ....