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. 

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...

" 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 

Closing the book at the scary bit

There should be a word for the time when you are awaiting surgery. I’ve done it too many times now but this feels different. Waiting for spinal surgery which carries such risk is slightly surreal- like a story you are reading and are really  intrigued by but also detached from. I think I’ve decided to close the book at the scary bit. It feels like it’s a huge crossroad from my life now and how it might be in the future. It’s a cliff edge and I really don’t like heights. But neither do I enjoy the constant pain and poor mobility. 

I now have dates in my diary for a pre-op assessment and angiogram. Just need to fill the date in for the surgery and that’s my summer sorted. 

The first time I was in hospital was to get my tonsils out. My recollections are of a strange excitement, very close to fear but with a hint of intrigue. Jelly and a giant Easter egg also pepper the memory banks. But the biggest impact were the nurses. I still remember the whisper of their kind presence at my bedside and the deep sense of being cared for that was communicated to me. I do recall waiting at the window for my parents coming to collect me and the relief when I saw them. But that experience left me wanting to be a nurse. It was such a wonderful thing to me to be able to care for others that my career was mapped out. It has taken me in such amazing directions and I’m so fortunate I’ve had such a varied career but scrape the surface and there’s still a nurse, wanting to make a difference. 

When I was admitted to have breast cancer surgery for the first time, the most important thing I took with me was my photo of my children. That photo was to remind the staff that I needed to survive for them. Now times are different and they are doing their best to help me approach surgery and will also be there as I recover. I’m very blessed by my family and my friends. My instinct to protect them is also still evident but life has taught me to accept help and kindness. 

Meantime I’m enjoying my new record deck, revisiting old friends in vinyl and enjoying making new ones too....my current obsession is First Aid Kit. 

Music, meditation, family and friends are keeping me grounded and content and that’s enough to be honest. 

Oh and these guys too...

Power is who gets the bed

I am that cat

If you follow me on Instagram or were friends on Facebook you will already know I have a lurcher dog and a tabby cat. I was describing them to a friend yesterday as an analogy for how I respond to stress. Cara the dog is a complete diva, one stub of the toe and they will hear her in Norway. She could put banshees out of business, she can empty waiting rooms at the vet and she will accept endless petting to help her feel better. She is an adorable wuss. 

Now when it comes to Koshka the cat, it’s a different story. He goes quiet and still and says nothing. He hides away in a favourite spot and does his best to make himself small ( something of a challenge as he’s a big boy!). His response to stress is to curl up and his body language screams, just leave me, I’m FINE. 

I am that cat. 

But when I’m  forced out of my safe place ( my home) I realise how vulnerable I am now. My spinal problem means my walking is very slow and I’m in pain as soon as I stand. A recent break away shook me from my denial and I decided to go for surgery on my spine. I’m hoping for the best and trying to prepare for the worst. I was originally told it could be a 50% risk of paralysis and that’s all I heard. But of course as I worsen and see that as a real possibility of doing nothing I am seeing the possibility of the other 50%. So as I write I am on the waiting list and trying to build fitness for the surgery. I even found my inner lurcher for a time and howled but normal service has resumed and I’m FINE again. 

But just every now and again I get angry and on one of those occasions I wrote this.

A growth

the crab crawls across

my consciousness

cancer stalks me

but it’s not that

I breathe

again

Rare

he said

a bony stab

on my spine 

pain it’s weapon

slowing me 

to no escape

I deal you cancer

I raise you 

a damaged spine

I say 

F***

them

both

But I’m fine really.......