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. 

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. 

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. 

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'

Peter Levine on Freedom from Pain

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.