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!

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. 

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. 

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

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. 

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. 

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.