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.