Wednesday, 17 October 2018

It’s me or the cat; Blue badge blues 12

Made to measure for Koshka 

So Koshka had the walk of shame at the vet ( again) and he’s back on a diet. Help!" You know how it goes; he eats cos he's fat. he's fat cos he eats..."
Our day starts around 4am when Cara the dog decides she needs to go out ( and then follow us up to bed!) Cue Koshka to pronounce his hunger and so it starts....
Feed me!

My friend was staying to support me recently and as she said when she too was caught; " he got me when I was vulnerable in the middle of the night!" By morning I don’t even remember what I gave him. When our feet touch the ground in the morning he springs to his bowl from anywhere and we eak out the first of the two pouches he’s allowed. I’m so relieved when it’s lunch time and I can give him some dried biscuits ( measured out carefully now). 
A previous vet said if he goes out there is no point restricting his food as he will find it elsewhere. He’s out just now, maybe I should warn the mice and the birds with a sign saying "BEWARE of the CAT, he’s on a DIET! "
Another friend recommended trying raw food so I’ve ordered some. Christmas may have to be cancelled. My recently rewarded person independence payment may need to go on cat food to stop me being eaten in my sleep. 
And talking of sleep, he’s currently not coming with me to bed. I’m having a withdrawal of love strategy applied to me. And as you know I’m vulnerable to that just now. His purring presence beside me when I came home from hospital was so soothing. 
Last year I was involved with asking people with neurological conditions what most helped them and I was struck by how many answered my cat or my dog. We can assume that our roles as caring professionals are the key to wellbeing but so often it’s the unconditional love of a furry friend that makes the difference. If only the cat could make me a coffee and serve me cheese and my life would be sorted and it would take a huge amount of pressure off my husband! 
Of course for me Koshka’s love is completely conditional. On food. My tension builds as the day goes on, can we survive on the recommended rations? One purr-fuelled head butt and I give in. Then the guilt sets in-for me that is-he’s without guilt.

Just as well he’s so very handsome. 


Thank goodness the dog is thin! 

Sunday, 23 September 2018

To see ourselves as ithers see us: Blue badge Blues 11


This week we have been watching The Crown...Yes I know!  I’m no royalist and probably a republican at heart but we had a few recommendations of it as interesting drama. It’s only one perspective of course and they skip over theories that the abdicating king was also a risk because of his fascist friends for example- but its interesting. The last one I watched was when Winston Churchill retired and he saw his portrait that had been commissioned. An honest portrayal of his frailty was too much for him.
In that moment I saw myself as well. A mirror of my own shock at my frailty. I seem to possess an ability to lock some of that reaction in a cupboard, only to be taken out on safe occasions. I keep going, taking comfort in minor achievements. I love getting out in my mobility scooter, even when I get wet! I smile at everyone who catches my eye and get warm responses. It’s a joy. I have created a safe environment at home where I’m resonably ok, apart from trying to do things in the kitchen! 
But when I’m out I’m reminded of my vulnerability. I remember that not so long ago I could walk the dog with pleasure and no pain. I see this shock in friends and family reactions to me. 
I too feel that shock. How did this happen? I know cognitively why it happened but my body remains traumatised. The physio reminded me that I’m still in the acute stage of recovery and I was relieved to hear this as it does feel like that. 
I’m holding trauma both psychologically  and physically. I recognise that my blog has become my way of processing all that’s happened at a thinking level. But the feeling level also needs cared for. I’ve found mindfulness so helpful but if I’m in pain or I’m getting the nerve recovery jumpiness I can find it really difficult. So I have to choose my moment. It’s not easy but I when I can it’s so powerful. For years I thought trauma could be solved by talking it through but now I know that’s not enough. I’m still reading “The body keeps the score” by the psychiatrist Bessel Van der Kolk.Its really helping me understand this process I’m going through and I do recommend it.
Perhaps the greatest experience of healing just now is holding my Grandson in my arms. We are all feeling blessed. My family and friends are the reason I’m getting better. 
I’m also slowly re-engaging with work, including writing, facilitating, coaching, mindfulness. I’m especially looking forward to the retreat I am co-facilitating next month. I’m setting up my office at home to see leadership coaching clients here as well as on skype (or similar). But I’m also considering using my extensive professional, coaching and lived experience to enable others on a one-to-one basis to adjust to the impact of serious illness. It’s a way to make sense of all of this and for me to use all my experience in my offer into the world. 
I would really value your thoughts- I’m on twitter @audrey.birt.

I’m slowly integrating my former self and my new self, trying to accept the changes and find the energy to continue to improve. Jings it’s hard work!

Sunday, 16 September 2018

Ye cannae shove this Grannie; Blue Badge Blues 10

Welcoming Davie 

The first time I understood how important it was to me to have grandchildren was when I was first diagnosed with cancer. I lay awake at night thinking how long do I need to be here for? Initially it’s at least see both the children safely on to secondary school. Then it was leaving school. Then maybe graduation or meeting their life partner. It was always long enough to ensure their wellbeing and that they knew how much I loved them. And I gave myself that goal, whatever I needed to do to secure that I would. But the trade off ( in my strangely distorted thinking process) was that I would need to accept I would never be here long enough to be a Grannie. So many people are robbed of parenthood by cancer, at least I was more fortunate than that.
And as I celebrated each decade thereafter, I felt such gratitude for my survival. At 40 I completed a Masters and had a party for all those who had supported us through such hard times. At 50 I decided to grow my hair again with a small attempt at rebellion to views about what older women should do! At 60 I had breast cancer again but nonetheless managed to share célébrations with my family and friends and savoured every moment of our time together ( and my hair grew even longer!).
I also saw my step grandchildren, who are very precious and have given me such pleasure in my life, grow into adulthood as smart, compassionate and beautiful young women. I’m Audrey to them, not Grannie but that doesn’t mean the relationship isn’t meaningful. What’s in a name; it’s love that counts.
So just as each decade was a time I never thought I would have, becoming a Grannie this week has felt extra special. Nothing quite prepared me for the explosion of love I have not only for Davie ( love his name) but also when I see him with my son and daughter in law. I’m very aware of my physical limitations and could list lots of things I won’t be able to do with him. I’m not so much ye cannae shove yir Grannie aff a bus;I’m more "ye canne get yir Grannie oan a bus! " So instead I am trying to focus on what I can do. Last night as I snuggled with Davie I sang wee songs and promised him I would be there anytime to hear his stories, I would read him many stories. I would do my best to make soup ( with help) and perhaps have a treat tin like my Mum always did for his Dad and Aunty and their cousins. I even promised ( don’t tell anyone), if he sat nice and still, he could catch a ride on my mobility scooter on what I hope will be many trips to the Botanic gardens. 
I think he smiled as I whispered to him. OK well maybe it was wind; but I do know my whole body smiled as we chatted. He is one lucky boy, surrounded by the love of his Mum and Dad, ALL his amazing and talented Grandparents, his Aunty Cat, plus wider family and special friends. If only all children experienced the security and care that brings, it would be a very different world. 


Thursday, 6 September 2018

When truth hurts: Blue badge blues 9

I feel about my outside walker or rollator, as us in the know call them, as I did about the leaflets i was given when I had breast cancer in my thirties. They had older women with grey hair on the front of them. The nurse touched my hand as she gave them to me and I wanted to slap her face with them. I then spent several hours speculating on how I could shred them and post them out the slatted windows at the top in my room in the hospital. It was on the tenth floor, no one would ever know. In the end I didn’t, mostly because I couldn’t reach! 
Back to the walker.....it’s clumsy, heavy and brown. And I hate it. For many reasons. I hate it because I can’t walk any distance anyway and it reminds me of that. I hate it because I need help to even get it out. I hate it because it’s ugly and my heart sinks as I approach it. I hate it because I feel disabled by it. I hate it because it reminds me of how I really am, not the version in my head still. And being honest, i hate it because it feels like something an older person should be using and I’m still only a youthful 62! I’ve looked at snazzier versions and they are slightly better but the truth is I still can’t walk far or easily and I’m not keen to make an expensive mistake.
You see when I’ve recovered from things before I’ve found there is a point when I start to feel better and then it improves exponentially. I’m discovering, and my recent appointment with the neurosurgeon reinforced this, this recovery is much
slower. 
So as a fan of an asset based approach I’ve been focusing on what I can do. I can get to the Royal Botanic Gardens in Edinburgh on my own in my mobility scooter. Not everyone believes that you are really disabled when you are in a mobility scooter. Maybe we just don’t look ill or meek enough, who knows? But what I love is the look on children’s faces. They reflect how awesome this is and they would really love one too! I’m thinking about pimping it up a wee bit. Maybe just a bairns not bombs sticker if anyone has one handy? A good friend was staying to look after me at the weekend and we went out for dinner locally. On our way back we got some good humoured attention from a man who had a walk that suggested he wasn’t quite sober. And the next day we rescued an elderly man in a mobility scooter who was lost; forming a mobility scooter procession that must have been quite an entertainment. He got home safely, saying thanks and that it had made his day to meet two beautiful women. I remarked later that when she came out with me in the scooter we got chatted up! Her rather harsh reply was reminding me that one of them was drunk and the other was aged 100! 

I’ve relearned to knit this last few months. Yes you did read that correctly. I’ve done a blanket for my soon to be born Grandchild. I’ve also knitted a cardigan. But who knew how hard it is to sew baby cardigans up? It’s only because the drugs I’m on for nerve pain are sedating that it’s not gone out the window with a shower of expletives. I’m taking orders for Christmas now.....

Wednesday, 22 August 2018

Coming out of the shadows

Coming out of the shadows; Blue Badge Blues 8
Edinburgh Festival Fireworks



It’s August, it’s Edinburgh, it’s mayhem, it’s the festival. I decided years ago as a resident in Edinburgh that it’s important to embrace it, bring out your inner tourist and have a bit of fun. The other option is to moan about the crowds, the buses, roads being closed and so on and that’s not appealing. But this year I’m only two plus months post op, i can’t walk more than two steps and it’s beyond overwhelming. I’ve been to two shows and to say I’m exhausted is to underestimate the impact. I’m currently thinking I may never try to go to an event ever again. I’ve had to make several phone calls in advance to check accessibility and how to ensure that I can get there with my families support. The planning, the exhaustion and discomfort of the trip, worrying about parking, lifting mobility scooters, gaining access and then just enjoy the show!
My abortive efforts to regain independence are probably my biggest source of frustration at the moment. 
I described myself as living in the shadows recently. I’m hit by such a sense of loss as I acknowledge this. I went to see Loki and he was challenging privilege in his fringe show. His challenge was, where was the male privilege for those men living in poverty, with little hope of change. Good question. There are many forms of privilege and so the show made me reflect on able-bodied privilege. For example 50% of fringe shows are not accessible. The inequalities that open up for the disabled and their carers are well documented. Maybe the disability movement needs it’s own #metoo campaign so we don’t forget and we bring an energy to improving access and involvement.
For the first time in my life I’m poised to apply for benefits. It’s the PiP ( personal independence payment ) form thats sitting by me. Even to get here I’ve had two loops to go through where I felt I was treated a bit like I’m guilty ( of benefit fraud presumably ) before proven innocent. It’s challenging but I’m determined to see it through. I can only think that so many are put off by even these stages and that is the purpose. No wonder attitudes to the disabled need to be challenged! 

But on the upside my efforts this week have allowed me to see two of Scotland’s greatest talents; Karine Polwart and Loki ( Darren McGarvey).Both were impressive and clearly masters of their arts. As well as very talented  both are  thought provoking and challenge you to,yes,see the beauty in our exceptional nation but also to look in the shadows and be honest about our ill divided land. 
If we ignore those in the shadows for whatever reason, if we don’t address the fundamental inequalities in our society, ultimately we all lose. If you don’t know their work do have a listen and check out the Orwell award winning "Poverty Safari". 
Meantime today’s challenge for me is tackling the stairs, wish me luck......
And on other news I made it to the sea side!




Sunday, 5 August 2018

Friendship and flowers; blue badge blues 7

Friendship and flowers

I’m more than six weeks post-op now and I’ve taken down my cards; having read them again. Thoughtful words on a card are so uplifting, please don’t ever think they won’t make a difference. It was with some sadness I was throwing out the dying flowers but then as if by some hidden force over the next couple of days flowers kept arriving; from visitors and even in the post.My house is beautifully enhanced by this array of colour and even more, my heart is full with the kindness and love they convey. I don’t have words to say how much it lifts my world which is quite small just now-being largely confined to home. 
But that said it’s been a sad week. A friend died of cancer, very quickly, having been told of the recurrence just over a month previously. Amazingly she visited me in hospital before she was admitted to the hospice and I’m hugely grateful I saw her then. I’ve reflected a great deal on friendship these last few weeks. Anne and I bonded over dogs and politics; a powerful combination. We also shared some mindfulness sessions here with some other friends which became a real source of comfort for me as my mobility and pain worsened. We called it winefulness sometimes as we took every opportunity ( excuse?!) to share a glass of fizz when each milestone of her treatment was passed. Anne was an awesome campaigner and I rather fear for the world without her commitment to change and passion to make this world better and safer. 
So it’s been a tearful and sad week and also a huge reminder to me to savour life in all its twists and turns.

This time has also reminded me to value and invest in friendship as well as family. So this blog is to honour friendship and for Anne, who is a testament to the truth that each of us can make a difference, not only through our campaigning and influencing but also through our compassion for each other. 

Saturday, 28 July 2018

Reflections on care: Blue badge blues 6

Blue badge blues 6

So I’ve been home for almost two weeks, phew. I’m gently easing off the burden of a long hospital stay but it’s taking time and energy. Gradually I’m building confidence in my mobility and my pain is reducing, although it’s not a linear process; particularly with a broken leg!  I have to be careful not to decline with a bad day and not to over do things on a good day. « It’s going to take time » is the mantra from all of the professionals who are supporting me. I find that phrase a serious challenge! There have been moments of hilarity too like when I couldn’t find the knickers i had taken off, then spotted them attached to the velcro on the moonboot! Not the look i was going for! 

 I’m setting myself goals as encouraged by the OT and physio and thats helping me recognise progress, however slow. The community team have been impressive so far with aids delivered quickly and I do have a sense of them working together to support me. They encourage mindfulness and positive psychology and evidenced based practice, to aid recovery and I’m genuinely enthused by their holistic  approach. Preparing to leave hospital I was anxious to ensure rehabilitation once I was home and that is working so far. I was also acutely aware that the focus of the OT and physiotherapy team in the ward was to get you home.  The impact of targets on discharge and waiting times are evident; even as a patient I was aware of and indeed felt some of that presssure. It’s complex because I also recognised that I needed to get home to improve my physical and emotional wellbeing. BUT I was very aware of my need to be in a safe environment.  The impact of falling was only too present for me, of course. The nursing and medical team were very supportive that I make a decision on whatever was right for me in the main but I remain concerned that targets on discharge from hospital do affect judgement and specifically challenge person centred care. It was right for me to be home but was enough done to ensure my safety initially? I’m not entirely convinced it was. But no pain relief could relax my body like the moment Koshka jumped on the bed beside me and started to purr. My best sleep ensued.
The turn over of beds during my stay in my ward was astounding. I was in hospital over a holiday period and yet never was a bed empty. The patients were all complex and in vulnerable situations; in my bay towards the end I was by far the healthiest! The ability of the nurses especially to shift focus between patients was really skilled and impressive, as was their compassion, whatever the situation. 
The ward itself was old and poorly designed so the working conditions were hardly supportive and the shifts worked were tough. Twelve and a half hour shifts with nurses moving from day shifts to nights and back within a week being fairly typical. The ward will move to new facilities soon thankfully but several times I thought of how hard it would be to work in that way as you got older. By the end of a shift the team of nurses were jaded no matter what their age. How will that be sustainable in the long term?
My experience was generally one of very capable teams, doing their best ( which was pretty good) under significant pressure. But alongside that sits the pressure on the system, of enough beds available, of safe staffing, of waiting times and that creates a huge tension which the teams were left holding. And we as patients in the system are holding it too. When you consider these same teams were caring for and surgically treating people with brain and spinal problems of a very serious nature, you have to question whether this is wise and it’s certainly not helpful or fair. 
I can only conclude we need more capacity and some give, in the services and organisational systems to take pressure of the teams and of course those requiring the service. We need kinder systems and by that I mean they are focussed on human impact and not just efficiency.
I’m so deeply grateful for the care I have had again and it’s helped me refresh my personal commitment to influence that quality service is the norm and sustainable into a transformed future. Also in order to achieve that, it’s vital that the service responds to learning from those with lived experience, we can really help.

So I’m slow, yes, but determined as always to make that difference in whatever way I’m able. 

Friday, 13 July 2018

Blue badge blues poem

Hospital confidential 

A confident stride
the prelude to 
tugged curtains
a breathless introduction

Conversations ensue
maybe the most painful
of our lives
behind paper screens

We don’t hear all the words
but certainly get the tone
the grimness in the phrases
the timescales dodged

Biopsies, scans
lives changed
behind those paper defined boundaries
between your life and theirs

iPads and magazines are stared at
in desperate attempts
to divert attention
from this stranger 

This stranger who’s life has just collided
with ours as I sit uninvited 
a mere bystander
in their unfolding disaster

Curtains pulled back
Words digested
Heads come up
Sad smiles make contact

Another hospital confidential
story unfolds 
and for that moment we are one
in these four beds

All our stories are shared
our tears witnessed
our pain cursed
our lonely fears observed

As I gather up for home
these women’s stories
will be part of my own story here
and be part of my tears shed

tears that slowly relieve the trauma 

and leave it behind

Tuesday, 10 July 2018

Blue badge blues 5

 The World Cup has been on while I’ve been in hospital. Amazingly I may get through it without seeing a game! Although if I’m out for the final then I will succumb. But it’s left me with a head full of football analogies. And if I can be allowed one, this week has been a game of two half’s! 
I was emerging from the trauma of ICU etc and had got a bed on a ward to aim towards discharge. Everyone was saying how well I was doing especially after such extensive surgery. So give me a goal and I will try to exceed it! I was going to recover in record time, until I slid preparing for my shower, my foot went under me and I fractured my ankle. I felt the click but still hoped it was only a sprain. But X-rays confirmed a spiral fracture; my surgeon said I don’t do anything by halves. I know this to be true.
So the rest of this week has been getting acquainted with a moonboot, regaining my confidence and trying to get mobile again. It’s been messy and I’ve shed lots of tears if I’m honest. It’s  made me doubt ever getting home or being on top of pain. I got the chance to see Cara, our dog, and I wept buckets. She on the other hand was only interested in whether she could share in the gluten free sausages my sister had especially prepared for me! But the tears have been a release too and they’ve helped me take of the « I’m fine » mask for a wee while at least. 
Today’s outing was to the Royal Infirmary Fracture Clinic. It was a long drive in a warm taxi but on the bright side we went right through this beautiful city and it made me yearn to be out and about and taking part in life again. That said I came back to the Ward, went straight to bed and slept. 
I remain impressed by the level of care offered to such a wide cross section of need by the staff. What’s even more impressive in some ways is the compassion that is shared so widely and wisely. Compassion is not only the bedrock of care but it’s also the fundamental component of trust and support in the relationship you have with the carers of all types. 

There’s a warmth and personal touch in this ward which gives me enormous hope for the future of our services. 

Thursday, 5 July 2018

Blue badge blues four

Happy birthday #NHS70 today. I have so many reasons to be grateful to you. The family i was born into, would not have had resources to pay for complex treatment. But more than that, going through treatment for breast cancer three times and now in hospital post thoracic spinal surgery; I know all about gratitude to those who conceived of the policy of the #NHS, free at point of need and those who make it a reality daily. 
I’m three weeks post op now and the rhythm of care in this neurosurgery unit and the ITU before it is mapped out clearly. I see every day the skills and compassion of the medical, nursing and physio and OT team. First class surgical care is the expected norm and the importance of the complementary nursing, physiotherapy and occupational therapy skills emerge as the focus shifts towards independent care.
The unit here is old fashioned but in the longer term there is a move planned to the ultra modern new hospital. In the middle of the night recently i was making up new verses for the song « what the world needs now » to «  what the NHS needs now is WD40 ( a squeaky trolley to check BP etc) . The second verse was footstools ( I ended up using a pharmacy box). Enough pillows could be another verse...you get my drift? Comfort and the apparently little things can be sacrificed when budgets are under pressure but they are important to staff and to patients in the .in my opinion, the best thing we could do this NHS birthday is to acknowledge the inter-connectedness of the care system and value and invest in all aspects of it.

As I write this I’m an inpatient of the Western General Hospital Edinburgh. The Western started as a poorhouse dating back several centuries but now is a national and regional leader in oncology and neurology. The NHS has not stood still and neither should it but the big challenge is adequate funding for both health and social care. As a society we need to have this conversation and develop a commitment for the future that we sign up to contributing to. Next year’s best celebration would be the first birthday of health and social care, free at time of need. Now thats a birthday celebration i would look forward to. 

Friday, 29 June 2018

Blue badge blues 3


Two weeks post op now and I’m hoping I’m reasonably alert enough to write. In the last few days I’ve finally moved from intensive care, then high dependency and eventually to a ward more focussed on rehabilitation. Each stage has brought a different experience. But the ITU was most impactful. 
I’ve recovered from surgery before when I’ve felt befuddled, sore, sick, glad it’s over; that very strange and messy mix of pain and relief with a little WTF added in! 
This experience was very different. On a ventilator, unable to speak, recognising people but communication impossible and a world of bleeps and alarms starts to create a context of noise, lights, tension but even so does not describe the fear i felt. 












The drug cocktail during and post the op stimulated my brain and I was aware of trying to make sense of my environment. But this particular potpourri stimulates a strange interconnection of stories. The most reassuring part of the time there was seeing family who did ground me in my voiceless reality. Some of the stories I had created , lived on for me and so once i moved to in high dependency I checked out a couple of the scenarios  with family for any link to reality. There were none! We laughed as I shared them but the disquiet remained for me. A bit like that feeling after a nightmare, when you know it wasn’t real but you still can’t shake it off.  I had had the debrief post op from the surgeon but a cocktail of pain killers and who knows what else meant it had scrambled in my understanding. 
Couldn’t fully remove bony growth, lost a lot of blood, detached it from cord, nerves fully active; the parapluie of phrases I’m still making sense of and trying to forget too if 
I’m honest!  Move your feet for me? Let’s try with this walker, with your stick, hows the pain, can you feel this here? Life’s parameters describing the here and now and setting the future goals. And I’m told I’m doing really well. In this environment, seeing so many struggling with so much more than me, I’m so deeply grateful for that. 

But now it’s afternoon nap time; important work so I will check back in later. 

Wednesday, 13 June 2018

Blue Badge Blues 2


So,I’ve had my hair done ( just wash and blow dry-nothing major) before my op tomorrow. Does that make me crazy? Maybe don’t answer that. But it makes me feel better and I’m grabbing anything that does just now. My bags are packed, new toothbrush bought, PJs are shiny clean. Everything but the sunscreen. It does feels a bit like preparing for your holidays; trying to fit everything in before the out of office goes on but with the obvious difference. Suddenly airport security seems appealing. 
I’ve had so many good wishes and I can see the challenge as people try to find the right words. I’ve developed a "once I’m back on my feet"message that helps me close down an exchange. But each time I feel a shiver of anticipation and fear. A tempting of a fate that is so far out of my control that I feel nauseous when I let myself go there. 
It’s with irony I feel grateful to the pain that has worsened since stopping one of the painkillers at the surgeons recommendations. It has chased away all doubts that I’m doing the right thing. I’m so relieved the surgery is nearly here. Whatever the outcome I know I need to at least try to get some quality of life back. The staircase has become even steeper and more of a challenge. I’ve found I’ve had to step up the musical options to accompany the climb. Currently it’s a version of zipity-do-da but with an F word at the beginning. Try it? It works a treat and I feel like maybe I’m winding up Walt Disney at the same time which brings a wee glow of satisfaction. 
"Feelings come and go like clouds in a windy sky. Conscious breathing is my anchor."~Thich Nhat Hanh
Just in case you are picturing me cursing all day ( well not all day) I’ve also found meditation very helpful with the nerve pain and it has saved me some days from being overwhelmed by it all. Mindfulness of breathing has got me through a huge amount recently. I recommend it and maybe once I’m back on my feet I can start to teach it to others. I would really love that.
My family are just remarkable and are keeping me sane and surrounded by love. And whatever happens that’s really the only thing that matters. Thank you to all of you who have wished me well. I feel nurtured by every kind word. 
I will stay in touch. 



Saturday, 9 June 2018

Blue badge blues 1

So the countdown to my op begins. Pre ops done, consented, angiogram done, right thoracotomy agreed and then the removal of the bone and the disc. So I taking big deep breaths and diving in. I’m trying to think of things I will need and how much I can prepare them in advance. I’ve even bought a reusable cup and I’m organising earl grey tea bags.
Maybe the bit i hadn’t quite imagined was having to stop one of my pain killers. Again I planned in advance and spoke to the GP, we had a plan and a back up. Now on my optimistic days I think, this is nature’s way of reminding why I am right to have the operation. On my bad days I’m less eloquent. In fact Andrew suggests i may want to pre warn the surgeons ( yes there are two!) of the richness of my language when the nerve pain kicks in. So I’ve been trying every diversion technique know; from knitting ( yes really), to audiobooks, to meditation to singing my way upstairs ( especially painful just now). Climb every mountain was the obvious one and guaranteed any witnesses will join in. The Russian national anthem I’m less proficient at but it’s rousing and at a sedentary pace I’ve found! My favourite diversion has been friends have been visiting and I’m surrounded by beautiful flowers and even have a freezer of fresh cooked frozen food! What amazing people I have in my life. And every bit of kindness and hugs work a treat, they really do.
I’m often asked what level my pain is at just now. And it’s hard to answer as so many factors are at play. I also know the principles of pain management, don’t allow breakthrough pain, take pain relief regularly etc etc but still a part of me wants to delay it, to wait and see even though I know logically that makes no sense. I’ve taught other people how to stay on top of pain and yet my brain goes to do you really need that? This is not a logical process! 
So when I saw this alternative pain scale I loved it. Much of yesterday I was at least a Picasso and leaning towards Munch. Today I’m being taking out to a secret place for some pampering, I’m hoping to be no worse than a Rembrandt! 


Wishing you a life at no more than a Vermeer.... and now I’m off with my daughter...I can’t wait. 

Sunday, 27 May 2018

Touching the wounds of the past

The paradox of trauma is that it has both the power to transform and resurrect. - Peter A. Levine -
                 

This week as the preparation for my surgery moved on, I had an angiogram. I prepared for it, like a first day at school. Clothes laid out, bag packed, wee picnic, not quite sharpened pencils, but you get the drift. I was a bit nervous but also carried a little strange excitement; it’s a fine line between the two of course but if nothing else it was data for the blog (!) and a step towards the surgery. 
I arrived promptly at 9 and sat till 11 chatting with a fellow patient who was awaiting surgery that day. Our life experiences may have been different but we knew nerve pain and it’s impact. But unlike him I don’t need to return to a manual job, believing it’s the only thing I can do. As he marched off to theatre cheerily giving me a wave, I felt a jolt of concern for his future. 
Then I was gown on and off to theatre with the reassurance 'they are great team down there'. I had already met the senior registrar who was to do my spinal angiogram. He explained the process and the risks so I would sign my consent. Unknown to me one risk was of a spinal stroke (1:1000). I swallowed hard and signed. I was therefore slightly less calm as I went back to the bed that I was soon off to theatre in. The bed was so deeply comfortable it fooled me for the deeply uncomfortable process ahead. 
Now the angiogram itself was tolerable and carried out by compassionate and skilled staff. But lying flat is the very thing that triggers my nerve pain. I negotiated some pillows below my knees but frankly as time went on that wasn’t enough. I breathed through it, mindfully managing until close to the end when the spasms nearly took over. But I made it, returned to the ward and tried to deal with the trauma. Because it did feel traumatic as much of surgery and medicine is, especially when you consider cancer treatment which I’ve faced several times. 
I’m currently reading 'The Body Keeps the Score' by Bessel Van Der Kolk. It’s a fascinating journey through understanding more fully the impact of trauma and how to help as described here by Peter Levine
'So what we want to do is touch into the trauma as it’s held in the body today and at the same time find resources in the body that can heal the trauma as it’s being held'
I’ve especially been interested in this move to trauma-informed work from a public health point of view, with particular regard to adverse childhood events ( ACE’s). But as I read and reflected on the kind of trauma I have experienced, as a result of cancer diagnosis and treatment, I realise that it too has left its impact both emotionally and physically.  What struck me was that although we understand a little about the incidence of depression post cancer treatment and recognise that many will have the symptoms of PTSD ,I wonder how much attention is paid to that beyond antidepressants? Should we indeed be supporting people to release the trauma beyond a chemical suppression? I guess many find their own ways to recover, healthy and otherwise but what if we understood more about this and were able to help people more clearly and consistently through to wellbeing? Is it enough to understand that trauma especially in early life, increases risks of illness both physical and emotional and then simply accept that the treatments can themselves add further trauma?                                                   I realise approaching spinal surgery that a whole lot of trauma to my body awaits and this learning is helping me gain further clarity about what might help you recovery, alongside the medical treatment and rehabilitation. I’m hoping to continue to blog during this experience. I do plan however to avoid any oversharing as a result of morphine based pain relief! But the question about trauma and recovery will be one I will be holding as I work through it all. I would love to hear your thoughts too. 

What I do recognise along this journey is the power of kindness, from staff certainly but also from my friends ( who not only give time, warmth and friendship but these lovely flowers too) and of course my very special family. I'm so deeply grateful for the great people I have in my life. 





Sunday, 20 May 2018

the best laid schemes o' mice an' men, gang aft agley





And so it began, starting with my pre op assessment this week for my spinal surgery. I was all set, I even had a wee snack packed as advised as it could take some time. I was up early and organised. But this week we’ve had a sick family with both Andrew ( complication of man flu) and Cara the dog ( complication of dog bite) on antibiotics.


 So hot drinks and cheese disguised antibiotics were delivered ( only the dog got cheese to be honest ). Much reassurance given that I could drive there myself. So blue badge in hand I set off to my car in the hope of a parking space near the door of the clinic. The car didn’t start. OK we’re a two car family and no one was well enough to be going out so back in the house, swapped car keys, tried car number two, all good except blue badge was the other car and time was slipping away. Much cursing ensued and back for the other keys.....Amazingly i arrived on time. 
First off I saw the nurse who asked loads of questions and told me things I don’t remember much about if I’m honest. But I do remember she said we plan for the very best outcome here and you’ve the team who can deliver that. That was a magical moment that flipped my pessimism and helped me focus on a good outcome. Happy day. The anaesthetist was another star. She lifted my bag ( I’m unable to travel light!) and then I saw her profile and noted her advanced pregnancy. It won’t be me for your surgery but we will look after you well she pronounced as she took me through what to expect. It was incredibly reassuring. She told me she had seven shifts left before maternity leave and I wished her well. And returned home to my own patients.
Fortunately the week ended with a sun filled trip to the East Neuk of Fife with my friend. She is the very spirit of kindness and caring and we can laugh and cry together, what more can you want in a friend. I even managed to explore the local towns in my mobility scooter! It was a special couple of days to help me prepare for the next stage.
This week I have an angiogram under local anaesthetic as a day patient. I have all the instructions. But of course just when you think everything is under control nature takes over and you get a virus. It wasn’t simply man flu after all, it seems. So now I’m a wheezy mess. Fingers crossed it doesn’t delay anything...

Sunday, 13 May 2018

" No one talks about it, till it happens"




I cried for someone I hadn’t heard of before, and certainly never met, on Friday. I expect some of you did too. Frightened Rabbit are not on my playlist but when the story unfolded of Scott Hutchison my heart ached. I’ve seen people post some painfully raw tweets today around times when they too have felt suicidal. The moment passed and they are still here and grateful for that.
And honestly I too know that place. When I first had breast cancer I went into fight mode as the language used around cancer urges us to do; you’ve got to fight it, you must battle with it, you should keep going and so you deny the impact of treatment and smile over the deepening cracks. I got through it and then came to the end of treatment, celebrated and planned a holiday a few months later. The thought of that holiday kept me going. Paris, spring...wonderful. No Gallery was left unturned but my favourite was the Musée de Rodin, I knew I could have sat in that garden forever. I returned to work and crashed. I was overwhelmed, exhausted, stressed and couldn’t see an end in sight. I was driving my car soon after returning home and felt drawn to drive it off the road. It lasted several minutes but somehow I managed to keep going on the road and when I stopped I realised I needed to get help.
 I did get help and was signed off work to give me time to recover. I spoke to a therapist and my GP but never admitted suicidal thoughts. I felt ashamed to have fought a life threatening condition, only to consider ending my life. But really I just wanted to end how I was feeling, not to die. And I imagine many people who do die by suicide felt similarly. Something stopped me, maybe it was that competing drive to live and to be there for my children. I’m fortunate, the people i turned to listened and acted on it. That made all the difference and I learned from that time. I am much better at meeting my needs now and better at asking for help. My best advice now to anyone living through cancer treatment is, carve your best path through it all with compassion for yourself. 
 I’ve recently been involved with work on Suicide Prevention and this report is our recommendations from the perspective of lived experience. The forthcoming action plan needs to be ambitious for change. A recent campaign by the Samaritans encourages all of us to reach out when we see someone we feel concern for. Just that moment of compassion can save a life. 
My dog Cara was bitten this week and has needed stitches and -especially stressfull for her- she has had to wear a cone.

We’ve had several neighbours come to ask after her, even the postie stopped to enquire and deliver dog biscuits with the mail. The compassion in our special community shown has been so very moving. The words to console dogs and their owners come more readily to us, don’t they? But what about when we fear for someone’s life? I’ve had both counselling and coaching training and even I might stumble over what to say and do. But just asking are you ok, can I help is really enough isn’t it? 
My tears this week for Scott were heartfelt, I ache for his family and friends and all those affected by his situation. May he be at peace now and I do hope he knows how much he was loved.
Perhaps his loss will encourage all of us to do what we can to notice, reach out, listen and respond when we see someone in pain. Because none of us are immune. 

The Samaritans are available for free 24/7 on 116123 and by email jo@samaritans.org