When No One’s Looking

moon

You came to me

last night

as you promised

you would

Under cloak of night

a million blinking night sky eyes

like fire flies

bearing witness to

our secret

rendezvous

Where I poured out my heart and hopes

beneath your watchful gaze

so silent still,

and in the silence

in the space

between the breath

where life begins and ends

and ends and begins

I feel your love.

Love that never falters

Love that never lies

Nor judges

Nor expects

Nor apologises

Nor shames

Nor blames

A love that is a beacon

on the horizon at the edge of the world

Ever guiding me on

Ever guiding me home

and into your arms

just like Nick said.

Beneath my fingers

earth cool warm

Roots dig deep

I lie with you

Raw

Naked

Open

As you gaze upon me still

You shine

My heart quickens

I shine

a leap

a flame

Behold a life

Behold connection

and there,

you point,

An opening in the coal cloaked sky

like a bullet

shot clean through

and on the other side

I can see clear, clean to heaven.

But wait

Where are you going my friend

my  midnight love

in such a rush

you move so fast,

Freeze-frame this moment

Don’t go

Don’t leave

Dance Dance with me still

still and wild

to the rhythm of life

and earth heart beat

“I will be back”

You say

You say . . . . . you say . . . . as

you go . . . you go . . . you go . .

And now in grace and gratitude I lie

on feather bed

as feathered friends

Sing up the dawn

and welcome the birth

of a precious new day

one that I have never seen before

A warm caress

wanders across my skin

like fingers of gold

and in the blink of my eye-spy-I

beauty lies

and

time flies

and

The world turns around once more

inside out

and back to front

and upside down

Turn around again I say

for I am hungry to dance with you

under a midnight sun

with a wolf heart roar

a swoop owl hoot on a dark tree night

When faeries frolic and mischief make

that we can only see in dreams

‘neath the full moon sky

where Brigid lullabyes

as  belly swells

With fire and love and life

and stars sing to the universe the mystery and magic of who we are

and who we are meant to be.

So come to me again, my love

Impatient I am

Find me in the north under the old oak tree,

There I’ll be waiting

Drum in hand

Song on my lips

And Love beating loud in my heart .

 

Painting: Frank Frazetta.

 

 

 

 

 

 

Cancer Care in the UK – what’s the prognosis?

tessaCancer is more than just a disease it’s political. Yesterday, when former member of parliament and cabinet minister, Dame Tessa Jowell, herself diagnosed with brain cancer and seriously ill, addressed her peers with a deeply honest and moving account of what it is like standing on the front line fighting for your life, we know it’s beyond crisis. That she feels the necessity to address the issue of cancer care in the UK in 2018, at this stage of her life speaks volumes about the urgency of the critical situation in which we now find ourselves.

Dame Tessa reiterated the alarming statistic that we in the UK, have the worst survival rate for cancer in Western Europe, due in part because diagnosis in cancer is too slow.

I know this to be true from first hand experience – I spoke to 4 GPs in the ten days before I was rushed to A and E in an ambulance. I had had blood tests,  and x-rays, couldn’t breathe easily, was struggling with acute swelling and bloating of the abdomen, but the alarming truth of the matter is the system is bursting at the seams. I was literally dying, and almost did, but the urgency of the situation was completely missed. Even now, receiving treatment at a cutting edge NHS cancer centre, urgent scans are taking up to 3 weeks to come back due to the severe shortage of qualified radiographers.

That the NHS is itself struggling to survive escapes no one. I pray that it is not terminal. But I strongly suspect that those who hold influence in these matters lack the will to offer the NHS even palliative care, let alone investment that would be served with a curative intent.

There is inequality across the regions as to what treatments and protocols are available. At my first hospital, local to my area, I was  offered only a few rounds of palliative chemotherapy for my advanced stage 4 lung cancer. To clarify, palliative care means end of the line – symptom control, and hopefully some life extension, the doctors don’t have any more options available to them, they are not giving the treatment with an intent to cure, only as a means of aiding “quality of life”. Though surely that is subjective, and not a matter of statistic.

I had to move hospitals and now travel a five hour round trip to meet with my brilliant, supportive NHS oncological team. Who do their utmost to source and offer treatment pathways denied me initially. Believe me, it’s not ideal. But it is how it is. And I am grateful, eternally.

Last week, I was shocked to see on the news that the Churchill Hospital in Oxford, due to acute staff shortages, out of desperation  was considering delaying chemotherapy treatment by up to four weeks, and reducing the number of rounds of palliative care offered.

Imagine this, a scenario in which you have been told that you have incurable, advanced stage cancer, and all the fear, worry, stress and anxiety that in itself arouses and add to that, the terrifying possibility of literally and effectively being told to go home and wait to die, because the funding crisis and the resultant staff shortages cannot meet demand.

Is it the cancer equivilent of “Do Not Resussitate”?

That Theresa May can say last week, and I quote,

“It’s a first class National Health Service, that has been identified as the number one health system in the world”

seems delusional, is untruthful and therefore for the millions like myself dependent on it for end of life care, unspeakably offensive.

Tessa Jowell personally, and not doubt professionally and politically understands the challenges of getting the message to land at the feet of the right people, and for them to hear it, and then for them to have the WILL to address it.

She recognises that what cancer patients want and need is ” to know that the best and latest science is being used for them”.

From personal experience, it is profoundly frustrating to know that treatments are available globally from which we may benefit, yet are inaccessible here in the UK due to funding limitations, not just because of a budgeting crisis here but due to the criminally exorbitant cost that pharmaceutical companies demand for their life saving and potentially life lengthening drugs.

She highlights the necessity for collaboration and communication across the global cancer health care community, between service users and doctors alike, that we learn from one another.

Below are  the three main points she highlighted in relation to the Eliminate Cancer Initiative which is initially focussing on brain cancer, but I feel is a universal necessity:

  1.  Link patients and doctors across the world in a clinical trial network.
  2.  Speed up the use of active trials.
  3.  Build a global data base to improve research and patient care.

Dame Jowell spoke of giving hope to others in her situation. And, let me tell you, it often seems in short supply, the medical establishment are very wary, unsurprisingly of anything that may be deemed “false” hope. In fact, when you are diagnosed with stage 4 cancer, hope is essentially deleted from your vocabulary. It becomes a dirty word. But like I always say, lucky I have dirty mind!

“We must accept finite disappointment, but never lose infinite hope.”                  Martin Luther King Jnr

hope2

I hope that Theresa May and Jeremy Hunt really heard what Tessa Jowell had to say, that it isn’t dismissed with a derogatory statement of pacification or a stubborn dismissal of the bleeding obvious, which is that the NHS, is sadly no longer the first class service most of us wish it to be.

I don’t want to see Jeremy Hunt, jacket off, sleeves rolled up a la Cameron in a gesture to us mere mortals that he’s one of us, strolling around wards and hospitals wearing an expression of faux concern. I’d like to see him face to face with people like me living life on the edge of the cliff, staring into the abyss, a service user. People who know what it’s really like. Telling it how it really is.

Because we are not just statistics, to be manipulated, we are not just names called out across the waiting room, we are living breathing feeling human beings, who want to carry on doing just that for a little while longer.

I pray with all my heart that the NHS receives the life saving treatment it needs, so that we, all of us, might receive the life saving treatments that we need.

I give my deepest thanks to Dame Tessa Jowell for speaking as she did on behalf of us all, and I sincerely wish her well. She brought the house of Lords to tears, the headlines say. But it’s not tears we need. It’s action. And I give my deepest thanks too, to those working under such unforgiving and relentless pressure within the NHS to make our lives a little easier.

“Let us live well with cancer . . . not just die of it.” Tessa Jowell January 25th 2018.

Watch Tessa Jowell’s speech in the Lords here.                                https://www.youtube.com/watch?v=E82hJ9CwJh0

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

To prognosticate or not to prognosticate

prog“So what’s your prognosis?”

If I had a pound for every time someone asked that question, well, I could probably fund a feet-up, rub-down weekend at Champneys.

But I’m just going to say it – it royally p***** me off!

I made the choice not to ask for my oncologist’s prognosis as to my impending mortality. Why? Well, firstly I wasn’t hopeful that I would hear anything I really wanted to hear. Just a cursory google about lung cancer survival had shocked me enough to know that. On top of which there were other serious issues I was dealing with, so I wasn’t in a hurry to hear the news.

I was also conscious of how our own minds can lock, stock and barrel influence the well being of our physical selves. How our beliefs can impact our health both for the good and negatively. I was mindful of the possible consequences of self fulfilling prophecy. If I am told I only have until Christmas, I could potentially limit my opportunity to survive beyond that, because I have so completely surrendered my authority not just to the disease, but to the medical establishment? I read  a famous account about a man who was diagnosed with liver cancer, he hoped to make it to spend one last Christmas with his loved ones which, happily he achieved, but sadly passed away soon after. An autopsy later showed that tests had shown a false positive reading for the progression of his disease. In fact, very little cancer was present in his body at all. The question is, was it his expectation of his own death that in fact killed him?

Sky Mood Chess Board Tree Hourglass Princess

Making a prognosis is not easy. To my lay person’s mind it is at best an educated guess based on a cohort of statistics. In my case, the statistics for lung cancer are taken most recently from 2010, so they are out of date. They reflect an older population, as at that time this is where lung cancer was most commonly found. In lung cancer terms, I am considered quite young.( Yay, knew I’d find a positive if I persisted) So the median, may not be as applicable to my situation, as I am not someone who is 70 with a lifelong history of smoking. And statistics don’t factor in what else one is incorporating into one’s healing journey such as lifestyle changes addressing nutrition and exercise, addressing stress levels and depression, or taking supplements, alternative therapies and treatments, counselling  etc and nurturng not just the physical and mental, but one’s spiritual life. Which research tells us, feeds into a person’s well being enormously, and therefore could potentially influence healing outcomes.

But back to prognoses – and just as everyone’s experience of cancer is unique to them , so is the decision to ask the doctor to prognosticate. I know that people want to understand what lies ahead for many reasons: practical matters have to be put in place, affairs put in order, maybe take that dream trip you’ve always put off, or what about those who want a prognosis in order to defy it, to exceed expectations, and to continue running right through the tape and beyond the finish line and into numerous triumphant laps of honour – gold medal hanging proud. For the doctors, having an idea of prognosis should enable them to establish the right options, and best care that is needed at every stage. Yes, they can get it wrong – they are human trying to do their best against a disease that has the skill to transform, hide, return, and persist and has outwitted the best brains for too many years.

So back to why I am royally p***** orf.

I think the question lacks sensitivity, compassion and understanding.

“What is your prognosis?” is akin to asking someone the question “how long do you have left to live? How long before you might die?”

It isn’t a casual question. It is profoundly personal, intimate and private.

Yeah, right. Not pleasant is it. At least, that’s what it feels like over here. I am quite convinced that you don’t mean offense. But it is deeply painful to hear. Please, please could you maybe be a bit more mindful if ever that question forms in your brain, and not let it escape your mouth. It might just be a passing question, or even a genuinely concerned question, but please think, engage your brain, and remember that there is someone who, despite looking absolutely bloody gorgeous on the outside is actually doing their damndest to keep on keepin on.

OK rant over. Keep well.

Oh, and I sincerely apologise if the cartoon offends. I find that sometimes black humour keeps the gremlins at bay.

Love always xx

Below is an article from the Guardian 2015 https://www.theguardian.com/lifeandstyle/2015/jun/02/doctors-predict-patient-die-prognosis-wrong

And for a less ranty evening do join me in London on Thursday January 18th.

https://www.cecilsharphouse.org/component/content/article/21-shared/shared-events/5090-cancer-and-the-art-of-living-an-evening-with-leah-bracknell

 

The Benefits of facing a Challenge

DSCN3352.JPG

As if life were not currently challenging enough, someone in their wisdom, namely myself, decided that more challenge was required.

“Why not organise a talk?” I said to no one but myself.

Seemed a brilliant idea in the moment. Never mind that perhaps my attention should be on more pressing matters, such as my health. Is it distraction? Possibly. Or is it actually something that is a vital part of my healing journey?

When illness and dis-ease blasts the wind from our sails life becomes a series of mental, emotional and physical challenges: daily mountainous obstacles to overcome, to face, or to endure. The  stress and fearful anticipation  of facing operations, hospital visits, scans, scan results, injections, blood tests, biopsies, x-rays seems endless in the face of uncertainty, and no, it doesn’t really get easier. It just becomes a part of one’s routine, an aspect of one’s new life.

But having a goal on which to focus, can be hugely motivational and inspiring. Why? because it puts you back in the driving seat. It reminds you how important it is to have things to look forward to in the future. More than that, it dares you to consider a future when a future of any certainty is the one thing that does not come with a guarantee. It reminds you that you are alive and that you still (and why not) have something to contribute.

Something strange happens when you receive a stage 4 diagnosis: contemplating the future, something I formally would have taken for granted, suddenly becomes the elephant in the room. How do you contemplate any future when what you are actually perching on the cliff edge, and the fragility of your mortality is the loudest voice in your head?

Just after I was diagnosed, in September 2016, my partner gave me – an eternity ring? box of chocolates? roses? nope. A calender for 2017. I didn’t even know if I was going to get to 2017 if I am honest. A calender for pity’s sake?

Fill it in, he said. You’re not going anywhere.

And so I did. And , you what, it turns out he was right!! But it wasn’t easy, it wasn’t easy at all. The feelings and fear and uncertainty it prompts. Yet, we mustn’t be afraid to invest emotionally in our future. It sends out a message to the universe if you like, and more importantly to yourself that you want and deserve a future. Life does not stop at a diagnosis. It used to scare me- Planning something for months ahead, but now? Hell no, we have just booked something crazy and fun for the summer and I have every intention of going.

Unconsciously, we can fall in to limiting ourselves because we buy into the expectations of others. For example, we fancied a little jaunt in our van last spring. We set the compass towards Hadrian’s Wall, but we never got there as we got distracted by the awakening beauty of the Lake District and the blooming Wordsworthian daffodils. We had a blast. However, prior to leaving my oncology team were concerned about the distance.

“Stay near a hospital” they urged. We know people at most of the major hospitals, except around Northumbria and the Lakes, where are you going again??”

Oh dear, my bad.

Not long after diagnosis, unsurprisingly, I felt a little cheering up was in order. And, clothes shopping was my chosen pick-me-up. But, somewhere inside of me a little voice niggled:

“New clothes? Hmmm, you sure you’re going to get much use out of them, after all, stage 4? Tick tock tick tock.

Yes, I actually almost entertained not purchasing a new pair of jeans, for fear of not getting use out of them? Dammit. No, I was not going to give into that fear, not pander to expectation. So I bought 2.

Do not start packing up your life before it is over. When you have stage 4, sometimes it is other people, health professionals, friends, family, who unconsciously and not with unkindness, begin to pack it up for you.

So returning to the subject of meeting a challenge which is to the forefront of my mind with only 3 more sleeps before lift off, why challenge yourself when life is already aiming plenty of arrows in your direction. First of all, I feel really called to do this, passionate about doing it. And I suppose I feel that by making the effort, a considerable effort to attempt to pull off something waaaay out of my comfort zone, that intimidates me almost as much  as it inspires me, that forces me to face my fear and do it anyway, will have a fair pay off in the sense of achievement. Even cementing the date in the diary was fairly daunting. What if I was unable to attend, what if I am unwell, what if… well, just that, what if …… ?

But if I can pull meet this challenge, it will bestow a confidence that will stand me in good stead for the other more medically related challenges that may loom upon the horizon. Every time we conquer a challenge it fortifies us for what lies ahead, each time we face a fear and meet it, stand up to it, we pay into our bank of resilience. It may even grace us with the knowledge that we are more courageous than we remember, and that we can achieve more than we realise. Goals are vital for the enrichment of everyone, it gives us purpose, and having purpose is a vital component for leading a fulfilling life. And, the goal need not be the end, just something to aim for, to aspire to, to motivate, to inspire, and  just having a go is equally priceless. That’s all. So, you may not complete every challenge, but that you take up the gauntlet shows that your spirit is willing and desires expression. There is NO failure in having a go.

“If you are going to fail, fail magnificently ” Martin Prechtel

Goals-1The scale of the challenge matters to no one but you. I know there are days when even getting dressed can seem like an insurmountable challenge, so not everyone need rush to the nearest bungy jump.

So, as I sit here feeling the fear. Feelin’ it in my bones. I know it’s a good fear that’s all to do with creating a successful evening, being of service, sharing, coming together in a spirit of hope and possibility, standing united, seeking inspiration and sowing seeds of hope and love and healing. Yes, it’s a good fear alright. It’s a sensation that says : Here I am Life. Embrace me.

That I have the opportunity to celebrate life in this amazing way is such a delightful gift for the soul. And what’s good for the soul is good for the body and good for the mind. So, I am nervous yet hugely excited. I am look forward so much to hanging out with everyone on Thursday – travel safe, be well, I hope to see you there.

Om shanti shanti shanti. Peace always.

xx

Information and booking for : Cancer and The Art of Living – an evening with Leah Bracknell at Cecil Sharp House, Camden.

https://uk.patronbase.com/_CecilSharpHouse/Productions/8F/Performances

 

 

 

 

Seasons Greeting with Love

carabosse

Wishing friends and loved ones, old and new, near and far, the very best of Christmases. May your stockings be filled with joy, laughter, song, cheer, magic, peace and love and a sackful of HO HO Hope. Thank you for all your support and prayers and wishes throughout the year. #attitudeofgratitude. xxx

So I’m a gonna sling on me wings, shake out the glitter, mount my dragon and ride full speed towards Christmas.

Oh YES I will!!!!

Love you all xxx