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 

Friday, 27 April 2018

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

Friday, 30 March 2018

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.......





Sunday, 11 March 2018

My Mum







My Mum

My Mum could knit
she could knit with
my budgie on the needles

My Mum made soup
that was always delicious
she needed no recipes 

My Mum thought she didn’t 
have much courage
she didn’t see what we did

My Mum taught me books
are treasures in life
we found in libraries 

My Mum showed me
families matter
maybe the only thing that does

My Mum died a year ago
and it’s Mother’s Day 
but I dont need that to remind me of 

My Mum and all she was 
in all the different shades

and that I miss her

Saturday, 3 February 2018

Is there an app for that?

Maybe it’s because it’s been January- new year, new me etc- that there have been so many references to keeping active on social media. Now I’m going to be honest and admit the keep active, 10,000 step brigade are getting on my already strained and painful nerves! A public health nagging service for the middle classes was not on my Christmas list. OK I know you love your fit bit but let’s be honest just like the puppies, it’s for life not just for Christmas. Will I  check in with you in a few months time just in case?
 The things I really needed weren’t on the Christmas list either; the grabber which stops me having to bend so low and triggering pain would not have been brought down the lum by Santa in this house. Nor would the sock “putteroner” device that I still can’t bring myself to purchase. It seems I’d rather curse loudly and sometimes leave the house minus socks instead. Pride and all that...
It’s not really that I’m in denial and a grumpy b....., or being honest, not only that. No it’s that I’m recognising more and more what it takes for disabled people ( and I am one now) to simply do ordinary tasks that most people take for granted and even are guilty of a bit of “able bodied smugness” around! 
A trip to Glasgow left me completely knackered last week. I tell you it was worse than any 10k I’d run in the past and I definitely didn’t get a medal, a free banana or even an endorphin release at the end. What I got was looks of sympathy when I got off the train and made my slow and painful way along the platform. By the time I got to the ticket barriers ( it was a long train-honest) most folk from the train were at home having their tea. I’m  still learning to master my new crutches and I did feel more secure but they brought a new meaning to the phrase painfully slow. 
So I’m thinking I might devise an app that rewards new achievements for those whom 10,000 steps are now ( or have always been) a mere treasured dream. My one would award points for everyday achievements and the odd special one too. This would include using the grabber to pick up a peanut before the dog got it ( if you are interested, so far it’s a draw (Audrey 1-Cara 1). 
Before you scoff go on -try it! It would include getting your boots on without swearing. ( that would be a resounding 0 ). It would include getting in and out a black cab without a sweat breaking out. It would include getting a seat at rush hour on a train when they announce the platform and you are nearly trampled in the rush. 
There would as well be special awards for the taxi drivers who put their steps out and run round to help you, for bus drivers who lower the bus and wait till you are sitting to move, they would also be for the folk who stop to ask how you are and if they can help.

But the biggest one would be a high five for Andrew who although he cracks bad jokes about being an Uber driver and can’t stifle every sigh when I ask if he will drop me off and grudges a taxi when the bus pass is tucked away in his pocket; he is the very reason I’m still able to be out there in the world doing my thing and surviving ( so far). And his ability to make me laugh and not just at myself, is what makes everyday a good one. Is there an app to remind you to say thank you enough?

Wednesday, 10 January 2018

A heart restored


Today I read
a stable genius
plans to make 
smaller nuclear weapons
to be more usable
so my head 
was low 
when I boarded
the souless train
I slowly drained
a tasteless coffee
I stared at a WiFi 
engaged screen
I waited for my station
Coat on
Rucksack on
Stick in hand
I gazed at the door
it opened
I raised my head
a hand held out
to help me off
I hesitated at first
then took it 
with gratitude
the kindness extended
warmed my soul
this January day
my head was lifted
a day transformed

a heart restored

Wednesday, 3 January 2018

But it’s not cancer!


I had just been diagnosed with breast cancer in my 30’s when I read an article in the Herald which mentioned that breast cancer was the "sexy" cancer to get. I was furious and ranted for days about this. If anything didn’t make me feel sexy, it was dealing with the fall out of cancer treatment. My scarred breast with surgery and radiotherapy was painful and forever changed, my confidence and wellbeing at rock bottom, my anxiety levels high, I was in a state of exhaustion and hyper-reactivity. He ( and yes it was a he) went on to say that because breast cancer attracted attention, a whole month of awareness to itself, research funding it was kinda cool to have breast cancer. He seemed to believe there was a pink hue that coloured it all away. I wrote several letters to the paper ( those were the green ink days, no twitter then to express disgust) but tore them up. None were ever sent. My release was a tear soaked pillow- and not for the first time.
I’ve been reminded of this recently as I’ve adapted to another loss of wellbeing. This time a bony growth on my spine with the impact of chronic pain and loss of mobility. Definitely not a sexy condition to get. My only nod to frivolity is a fancy walking stick. It’s not really up there with walking round the streets over night in a decorated bra, is it? 
And the contrast doesn’t end there. Because breast cancer isn’t in anyway a cool or sexy condition to get but what it does have, at least at the primary stage of diagnosis, is a clear diagnosis and treatment pathway and a well established network of support. In my recent breast cancer diagnosis I was diagnosed promptly, treated promptly, referred to specialist nurse and linked to a Maggies centre and Macmillan project as well for support. That not only has the impact of really helping with different issues and enabling the learning of new skills but you also feel valued; like your wellbeing matters to others. 
A diagnosis of a neurological condition has been so different. And I know from work I’m doing for the Neurological programme at the ALLIANCE, that is common to many other diagnosis across the spectrum of neurological illnesses. The neurosurgeon was kind and skilled in his diagnosis but also brutally honest in his assessment of my future, with or without risky surgery. It traumatised me and my husband. Our information support was google and it was less than helpful as this is a rare condition apparently. My GP was as shocked as we were but did suggest OT and community physio when I asked about it.  Then I turned to friends and family, many of whom are very knowledgeable on medical issues and so I built up a greater sense of what was possible. I asked to be referred for physio and the appointment took 20 weeks to arrive. Meantime I paid for several  physio appointments which were of limited value. I paid too, for a second opinion which confirmed the first one but at least that settled my mind. No nurse specialist exists to support you through diagnosis, no clear plan is available, no easy access to physio that’s appropriate, no signposting to charities that can help. At times I feel lost in a maze not knowing how to escape. 
As with a diagnosis of breast cancer I don’t know my future, and that kind of uncertainty is after all familiar to me so I’m relatively resilient; having learned over many years to stay in the here and now as much as I can. But the kind of trauma these types of diagnosis has frequently results in a type of PTSD ( post traumatic stress disorder) and I feel for those people who don’t have my experience and resources to help. The cushion that a clear pathway of care provides, including referral to support and rehabilitation type services reduces stress, improves skills and knowledge and helps you respond best to treatments. And what’s more you feel like you matter. 
It’s a strange serendipity that has led me to be working just now on the Neurological programme at the ALLIANCE but what I have learned through my own experience I will be putting to good use while I’m supporting that vulnerable community. Because we all matter and there is so much that can be done to improve things. So in 2018 you find me managing my pain better, pacing myself ( and trying wrist crutches soon), with my sleeves rolled up hoping to make things better for others too.....and of course I'm planning fun times along the way.

 Wishing you all the best for 2018.