Cannabis and Me: Breaking the Law to Live

I

skynews-cannabis-cbd_4340071I have just celebrated the second anniversary of the day I almost died.

But I didn’t.

I have also just passed the two-year mark from the day on which I received a diagnosis of stage 4 lung cancer.

And last week, the long-awaited scan results from the first phase of the trial I am on, have come back with the encouraging news that, currently, the cancer is stable.

The celebration is muted, one of relief rather than champagne and fireworks. But it is without doubt the most positive news to come my way in almost a year.

So what does this mean? Quite simply it means Hope. It means that I can remain on the trial for now, until the next scan is performed in six weeks’ time, and the cycle of anxiety once again cranks into motion and I brace myself for the frightening possibility of the tug of the rug from beneath my feet.

The writing on the wall two years ago was very different given that the statistics, as out of date as they are for stage 4 lung cancer, predict a frighteningly brief median survival time of 8 months. When one’s mere existence, the taking of another breath and the walking of another step are such substantial achievements the sense of gratitude is overwhelming and I thank not only all of those who have played a part in my healing journey, but my very lucky stars on high.

As I stand here today upon shifting sands, looking back along the ribbon of time to the moment when the MacMillan nurse delivered her apology for my accelerated mortality,  I wonder, did I think two years ago that I would still be here? The first doctors I saw certainly didn’t have much faith. Did I?

How, I ask, am I still here?

How have I managed to surpass my expiry date? Am I a survivor? No, I am much more than that, I am a cancer thriver. Survival relates to statistics and time. Thriving is all about quality of life.

How have I exceeded expectation with the odds so stacked against me? In the two years since my almost fatal illness and diagnosis I have only been treated by orthodox medicines for less than half the time, none of which, unfortunately, have been very successful or long lasting. In the intervening weeks and months between treatments I was given nothing, with doctors adopting a “wait and see” approach.

So, I credit a trilogy of three things that I consider crucial to my self-designed healing protocol: Firstly, I approached my whole relationship with my cancer from a psychospiritual perspective. I believe the power of the mind is a much underrated ally along a healing journey and personally have found it to be the most potent of medicines. What is more you don’t need a prescription! This is coupled with exploring healing from a spiritual perspective which has brought, I believe, rewards both physical and emotional, and has created a stable and inspiring context for the challenges of living life with a stage 4 cancer.

The third arm of the healing triangle involved taking matters into my own hands, thinking out of the box, and taking a risk. But then, when you think you have nothing to lose and everything to gain one’s relationship with risk becomes considerably less cautious and, by necessity, more maverick.

ted kinsman

I decided to integrate a plant medicine into my healing programme, and I began to use cannabis oil high in THC medicinally from the day I left hospital two years ago. I have been committed and consistent in using it as a vital component of my journey to healing, both alongside regular treatments, and when non was offered, on its own. Only stopping in recent months when I embarked on the trial.

I do not believe that I would be here without it. Two weeks after leaving hospital in 2016, I experienced a recurrence of the pericardial effusion that had previously led to cardiac tamponade which without the emergency intervention would have been fatal. The expression on the face of my cardiologist said it all: shock and fear. Options were limited. So, he gave a me a drug normally prescribed to treat gout, in an experimental attempt to see if it would stem progression.

“If you experience side effects such as diarrhoea, desist immediately” he said. By the third day, I had to stop taking the medication, but I continued with the cannabis oil alone. At the next check-up the fluid seemed to be abating. And little by little over the next two months it slowly disappeared altogether, with no clinical explanation as to why this had happened.

I have also found the cannabis effective at moderating side-effects with orthodox drugs, in particular while I was undergoing chemotherapy. Side effects, especially in the case of chemotherapy can at times be as bad or worse than effects from the disease.

And overall, I believe that it has slowed down the progression of my late stage cancer. Untreated, as mine has been for half the time, lung cancer is typically considered to be an aggressive form of cancer, and the expectation would be of rapid progression and death. It may not have been enough on its own to completely halt it, but the next best thing for me is slowing down the disease. And for people in my position time is a very precious thing.

ted kinsman 5

Debate around medicinal cannabis has thankfully reached a tipping point. The confiscation of Billy Caldwell’s medicine in the UK being the catalyst for a long overdue informed, intelligent and transparent discussion. The government’s  hand, in the form of Sajid Javid, was well and truly forced – they had to be seen to intervene. And, as Billy’s mother predicted, his conditioned improved as soon as the cannabis was administered. Imagine the consequences if they had rigidly focused on the question of legality while a young boy’s life hung in the balance; or stuck to their guns and held fast to the party line which denounces cannabis as being of no therapeutic value, when everyone now knows that the UK licenses the world’s biggest government-approved medical cannabis production and export market. Was this an act of compassion or a cynical avoidance of culpability?

Because of recent stories such as Billy’s and Alfie Dingley’s, more people have now seen with their own eyes the positive medicinal effects of cannabis. We’re not talking about just relieving symptoms, cannabis is, for thousands of people, a matter of life or death.

However, I am concerned. We are teetering on the brink of immense change: there is the very real opportunity to implement a radical and revolutionary reform in policy that could see the end of physical and emotional suffering for tens of thousands, possibly millions of people in this country alone. That merely by legalising cannabis in all its forms for medicinal use could potentially save millions of lives and vastly improve quality of life. A change in the law that puts the basic human  rights of all citizens to enjoy good health and health care above that of paternalistic, governmental control, and pursuit of commercial gain. But the early signs are not looking good.

Why? Firstly, many families are already finding the new system unfit for purpose, it is discretionary, applications have to be made to “special” panels, yet how informed are they? And who are they? Whose interest do they serve? GPs, the people who are on the front-line treating patients face-to-face and who may have long-standing relationships with patients are edged out of the equation. Then the applications must be placed before the Home Office or the Department of Health, and that’s only if you are lucky.

The level of criteria that has to be fulfilled to prove eligibility is virtually impossible. Ilmarie Braun whose young son has 120 seizures a day, reduced from 500 after using over-the-counter cannabis, has had her application refused, and feels that the government is merely paying “lip-service” to families’ needs. She says that the system is “difficult and restrictive”. Is it surprising that as yet, few applications have been tendered?

It is a lottery as to whether a patient’s application will be approved, our human right to health and relief from suffering is effectively being denied.

Secondly, the debate is concerned only with pharmaceutically made drugs containing cannabis and cannabis oil. Many thousands of people prefer to medicate using the plant itself, smoking it for quick pain relief, or like myself making it into an oil in order to ingest the large quantities required for maximum healing. But as we all know, pharmaceuticals means big money. You cannot patent a plant in its natural form.

Thirdly, the spotlight of attention has focused sharply on epilepsy, in children in particular. But the MS community has long been self-medicating with cannabis and recent years have shown a growing movement within the cancer community utilising cannabis not only for symptom relief but as a means to potentially killing the cancer cells. There are many in vitro and in vivo (mice) studies showing how cannabis has been successful in causing apoptosis or programmed cell death which causes the cancer cells to effectively commit suicide. And anecdotally, this does appear to be happening in people.  Watch Joy Smith’s amazing story on This Morning, she cured her terminal cancer with cannabis oil

There is a climate of historical fear and misunderstanding that is threatening to turn the medicinal cannabis question into an expensive and unworkable excuse for a solution. There needs to be the political will to match the very real need of peoples’ debilitating, painful and life-threatening diseases, for whom conventional medicines are no longer having the desired impact. Clearly, there needs to be more research and more studies. But this can only work when cannabis as a medicine is no longer illegal. And, were one to be cynical, the will won’t exist while big pharma companies continue to block research and investment in something from which they cannot profit.

The government consistently sites the psychoactive side effects which can cause the sensation of being high or that it is addictive as a reason to exercise control and caution. Once again this is an inconsistent and hypocritical basis for an argument. When alcohol, nicotine and caffeine are considered psychoactive, ie they affect the function of the central nervous system, altering perception, mood or consciousness, yet are legal, freely accessible and socially acceptable. Add sugar to the list and you have 4 very addictive substances. Three of which are known to have a detrimental even potentially fatal impact on our health, and are a huge drain on national resources. Are they not “drugs” too?

The government’s persistent labelling of cannabis as a “drug” serves to confuse and alarm the general public, and demonise something that for many is a medicine. Yet public perception is changing as they see more and more evidence of cannabis being successfully used to bring healing. Many MPs, have been calling for reform, yet Theresa May holds fast to a timid, conservative, out of date and uninformed view:

“There’s a very good reason why we’ve got laws around drugs, because of the impact they have on people’s lives, and we must never forget that.”

We are all very good at turning a cultural blind eye to the bleeding obvious, and that is, that many of the completely legal prescription drugs dished up every day, are potentially addictive,  many contain opiates, anti-depressants are prescribed despite carrying a potential warning against suicidal thoughts or behaviour. Recent studies have shown that addiction to prescription drugs is increasing at a worrying rate, with many brands available to buy from the internet. Chemotherapy, the standard cancer fighting agent for the last fifty years is known to be extremely toxic to the body. It seems to be a double standard that is inconsistent at best when we are discussing “drugs”.

It makes no common sense. This line of argument can no longer be validated.

I also fail to understand why the people who really matter, ie the patients themselves are not being consulted. While special panels of experts and politicians gather around to make decisions on our behalf, where is our voice being heard? The voice of those who experience daily the worry over life and death, who have had no choice other than to risk breaking the law to save a life, and who have been working with cannabis as a medicine for years.

Why have we not been consulted? Why do we not matter?

Until you walk in another person’s shoes – you cannot truly appreciate what they have to endure.

andy macdonaldLabour MP Andy McDonald, the Shadow Transport Secretary has made a heartfelt plea to the government to change the law on cannabis oil. He lost his own son to epilepsy in 2006, and wondered if things might have turned out very differently had he the benefit of cannabis. I hope the the law is changed in time to be of real benefit to his second son who also has severe epilepsy.

I envy Theresa May. And I never thought that I would say that; I envy the fact that the naughtiest thing that she has ever done is run through a field of wheat. How might she have fared had she had to break the law in order to buy cannabis to give herself or a loved one the chance of life? To buy a “drug” off the street, not knowing its strength, (street cannabis I have learned is likely to be a super skunk several times the potency of regular cannabis), its provenance, what chemicals have been used in growing it, how it will affect you, how it will interact with other medicines, if you can even afford it, how much is safe to take, whether you will get caught?

I envy that she has never had to hear the words “I’m sorry it’s terminal, no there’s nothing we can do. You have maybe ……..a few months. Go home, put your affairs in order, say your goodbyes”   To have to break the news to your children, to live with the fear and threat everyday of looking down the barrel of a gun.

I’d like to ask her: If you were walking in my shoes, how far would you be prepared to go?

I throw down the gauntlet, actually no, I beg the current government to be brave in the decisions they make around legislating medicinal cannabis. To embrace an enlightened and compassionate attitude towards the administration and use of medicinal cannabis. To legalise it in ALL its forms for medical use. That way it can benefit millions of people. Not just the lucky chosen few.

Look around the world at our neighbours who have legalised or are considering legalising medicinal cannabis. Look at the research and studies both scientific and anecdotal. Have faith that the majority of people are quite capable of making wise and informed choices. We don’t need or want more rules, more restrictions, more hoops. When you are ill you have quite enough to worry about, physically, emotionally and financially, believe me. (Especially when, like myself you condition has been diagnosed as “terminal”) Our health and well -being is our business, our choice and not for someone else to parent and control. Let us have agency over our health and our lives.

Let’s put patients first!

Let’s all be a part of a global movement to shift attitudes towards one of the worlds oldest medicines. Let’s invest energy, time and money in discovering its potential. Cannabis is being seen, in some cases, to make possible the impossible and cure the incurable. This cannot be ignored.

Put an end to people like myself, Billy Caldwell’s mother, Alfie Dingley’s family and thousands more who have had to break the law in order to try to save our lives.

For heaven’s sake, have a heart. How can any government justify this from any kind of moral perspective?

I pray for seismic change.  But my fear is that the government are too entrenched in outmoded thinking and possess neither the vision nor the balls to deliver an overall lifting of the ban on cannabis for medical use. And that the new policies will prove so restrictive that ultimately almost no one will benefit. And people will die.

Finally, I was so happy to read last week that young Alfie Dingley is doing really well. His mother said: “He hasn’t set foot in a hospital since June and he’s had no time off school. He has been seizure-free since then and is even learning to ride a bike. My son is proof medicinal cannabis works.”

alfie 6

(Microscopic cannabis photos : Ted Kinsman)

 

Life is Like a Box of Chocolates

“Life is a box of chocolates, Forrest said, “you never know what you are going to get.”

life is like

I couldn’t agree more. These words have been dancing around my head for some weeks now. A reflection of just how life has been these last few months. Many describe the experience of cancer as a roller coaster. I’ve always said that I’ve never been a fan at the best of times: gut-wrenching-stomach-turning fear at 60 mph on a bone-rattling metal serpent is not my idea of a good time. A screaming out-of-control hair-lashing hand-flailing adrenalin rush, no thank you – pass the chocolates please. Though one good thing about the roller coaster. It does eventually grind to a teeth-clenching halt and you can disembark. Not so with cancer, stage 4. No getting off. No candy floss. No hook-a-duck.

So back to the chocolates – cancer is like a box of chocolates – you never know what you’re going to get. Rewinding a few months, some bugger had snaffled all the good ones, and all I was left with was a few stale, half chewed nut clusters that nobody wants and sad empty wrappers. In other words, life was proving a wee bit challenging to say the least both physically and emotionally. Actually, who am I trying to kid? It was a dark time. A difficult time. It seemed as if the way forward was closing. My wonderful, supportive, highly experienced and eminent NHS oncology team for whom I have the greatest respect and gratitude, and who have been with me every step of this journey for the last 18 months advised me to go home, spend time with my loved ones, set my affairs in order and make contact with Macmillan home support ASAP. There was no more treatment they could find to offer at the moment. Maybe I would find a trial. Maybe. Regrettably though, from their perspective, and more crucially mine, our journey together looked like it could be drawing to an end soon.

It took a while for the significance of the situation to truly sink in.

IS THAT IT???

Do I just go home and WAIT …? To DIE …….?

When hope is snatched from you, it is so, so hard to know how to continue, how to be, who to be, how to live. What’s the point? Fear seeps in through the cracks and eats away at the spirit. Despair becomes your bedfellow. Waking is a nightmare, yet sleep never comes. Guilt walks in your footsteps, every time you witness the pain and sadness in the eyes of your loved ones having to endure this terror with you. Injustice justifies your anger and your grief. Why fight when you have been told there is nothing left to fight for? You cannot undo the inevitable. You have been told there is nothing more that can be done. I’m so so sorry. Now, where have I heard that before? Oh, yes, on diagnosis. I do WISH people would stop apologising to me. It’s not your fault. And believe me, you ain’t as sorry as I am! The medical establishment, and I mean this with no disrespect, have decreed that NOTHING MORE CAN BE DONE within the pathways and protocols currently available via the NHS. (Well more palliative chemo could potentially be on offer, but they know my feelings on that.) In the lung cancer vs science battle, there’s only one winner. And it isn’t going to be me.

With each day that passed, physical distress and discomfort was matched by escalating mental and emotional distress. For the first time since I was diagnosed the insidious canine of depression was curling up in my heart.

And then, one day, out of the blue I had a realisation: I had bought into “the fear”. Cancer adorns itself in fear, and dealing with fear and its impact on one’s mental, spiritual, physical and emotional wellbeing is one of the biggest hurdles that a person diagnosed with cancer has to overcome. Cancer breeds fear. And fear is contagious. Fear disempowers. Fear renders us helpless. Fear makes us question our own mind, beliefs and instincts. Fear is heavy – it crushes us and restrains us. Fear builds a prison around us. Fear is like a thief in the night, it steals hope. No one is immune to fear.  Not even the medical experts. They are human after all.  I saw fear on their faces, a fear that they couldn’t do more to help; I felt it, I smelled it on their breath, I saw it in their eyes, and I swallowed it and gave it permission to swallow me.

Until I saw it standing there in the shadows. And I chose to reject it.

If I feel fear, let it be my own. Then I can seek to understand it, and develop my own relationship with it. Fear does not merely diminish, on some level it serves to protect us. It can motivate and help us to dig deep into our resources. The Fight or flight response of the sympathetic nervous system demonstrates that. But, let me not be bowed and broken by the burden of other people’s projection of fear at my situation, not family, not friend, not practitioner. Allow me to take ownership. To steer this in the direction I need to travel. Let me break free from the bonds of personal and collective limiting beliefs that are unable to acknowledge that the incurable could be curable, the impossible achievable, and deny us the fierce grace of our untapped human potential.

Unintentionally, the manner in which I was seemingly being released from the care of a team whom I trust and respect and of whom I have become fond and who have become fond of me, caused incredible distress and panic, and depression set in. As well as having to deal with a real physical illness, I was now combatting mental dis-ease. How delicate news is passed from practitioner to patient is undoubtedly no easy task. We are all different, we will all respond differently. Some may prefer a sympathetic approach, others a more pragmatic stance. But, having been the recipient of devastating news on several occasions, I recall the words from the Hippocratic Oath: first do no harm. I suspect that this oath is interpreted primarily in physical and physiological terms. However, I would strongly argue that health practitioners cannot underestimate or neglect the psychological impact that their words and demeanour have on a patient. Us patients are not merely slabs of meat. A more holistic, inclusive approach is required, we cannot continue to separate body from mind from spirit. I strongly believe that our physical wellness is entwined and interacts with our mental and emotional wellbeing. I would go so far as to say that physical dis-ease can originate in the psycho-spiritual realms. Personally, I have no doubt that certain distressing and devastating life events in my own experience subsequently translated themselves into the cancer I experience today.

If I cast my mind back to the day of my diagnosis, the young woman tasked with passing on the news came armed with pity. And pity, is something else which I find at best futile and at worst offensive. Pity from others is another disempowering sentiment. It casts one in the role of victim. It breeds self-pity, which now and again serves as a necessary release, but as an on-going state encourages passivity and helplessness. News delivered, she left me alone in an empty room with an appointment to see the oncologist, my future in shreds, all hope extinguished, trying to digest the undigestable.

Five minutes later, a Sister came in.

“I’m going to say three things, she told me,

  1. You are young (nice try I was 52 – BUT young for a lung cancer diagnosis)
  2. You are healthy  (Seriously? I just got diagnosed with stage 4 lung cancer – but OK, apart from that she was right, I am strong, fit and have hardly ever been ill.)

And 3. You have your yoga. (Bingo, a rich spiritual life that inspires me, nourishes me and teaches me to look at life from a different perspective)

And, just like that, she gave me something so precious, so profound, so wise – she gave me back hope. And hope gave me back my power, just a little bit, but enough.

The second century doctor Galen held that “confidence and hope do more good than physic”. I couldn’t agree more. And if the medical professionals can’t see, or more crucially are afraid to trust in the positive power of hope, so fearful these days are they of proffering ‘false’ hope then I shall go searching for it myself. I shall create it myself. The first and last thing a patient holds on to is, Hope. And it is a person’s confidence, their belief in whatever healing is offered which can influence the positive outcome of their treatment. How else would placebo be so efficacious?

I have maintained right from the beginning of this journey, that we are the alchemists of our own healing. And I will only heal, if I chose to heal. And believe I can heal. Time to step up. Take command. Time to think outside the box, expand my consciousness of possibility to beyond the scientifically proven and statistical. Time to concoct my own Medicine. And believe that it is possible that by being open to different ways of healing you can influence the outcome and make a difference. That you can defy expectation. That you can achieve what is deemed impossible. Why not? What is there to lose? What is there to fear? To fail is not to try. To try is to succeed. Be here Now.

So I had the dog put down. Churchill’s black dog, that is. And, breathless as I was, unable to walk far as I was, recovering from operations as I was, I made a vow. NOT to buy into other people’s fear, no matter who or how expert they are. I vowed to participate as much as possible in the things that I love and that inspire me. I vowed to believe that something good is coming, however crazy that sounds. To believe in miracles. To never give up hope. To expand beyond my own limiting beliefs and the limiting beliefs held by the collective. I chose to believe in the power and potential of what Hippocrates describes as “the natural healing force within”.

I opened myself to the possibility of the impossible, and then, something amazing happened, the universe began to listen and respond. After two failed attempts to get on a trial (talk about being given false hope!) – third time lucky – I was accepted. Early stage trial, I feel I am of marginally higher status than a rodent, but it welcomes hope back into the room. And, yes please, I’ll take that.

 

st winifredCommencing the trial has coincided with a whole new chapter, a summer of adventure, joy and healing, woven together by a daily pilgrimage in celebration and gratitude for life. The journey first took me to Wales, where I chose to celebrate and give thanks for my birthday and my life at the sacred healing waters of St Winifred’s Well in Holywell. The Lourdes of Wales. Where, so they say, miracles happen. It was an opportunity to immerse in prayer and focus strong intention for the year ahead. And immerse ourselves we did – literally! three times, in the freezing mountain waters! Wow Wow Wow!

 

Did it work? Am I cured? I don’t know, but all I can say is that each day, little by little I feel better and better. I feel blessed.

As the days and weeks have progressed my strength and vitality have improved daily on a diet of spiritual nourishment, all night out-door ceremony, community, friendships old, friendships new, family, magical Mexican healings, hot sweaty camping, prayers of gratitude, prayers for the Earth, gathering around the fire with indigenous elders, dancing with the deer, feeding the soul, feeding the spirit, teaching in circle, learning in circle, introducing Marakames (indigenous Mexican shaman) to the delights of kebabs and fish and chips, feeding my belly with the womb food of my childhood days spent on the streets of Singapore, late night hammock star gazing, and trip upon trip to London to participate in the trial, and a huge thank you to everyone on the ward who make the process so easy to bear.        All mixed together in my cauldron of healing, bound together with a strong vision of the future I desire for myself and conspire to manifest.

 

411px-The_magic_circle,_by_John_William_Waterhouse (1)

All of this is medicine: My medicine. I believe in the power of spirit, plant, mind and medical.

Next week a scan will tell me the status of the cancer: same, better or worse? The result will determine whether or not I am allowed to continue on the trial. So, now I must consciously chose not to succumb to what we like to call scanxiety – the creeping terror of what ifs.

Because, judging solely on how I am feeling right now, on my quality of life, my physical robustness, my reserves of energy, my optimism, all of which improve every day and have transformed me from the person I was less than two months ago who was struggling to breathe or walk– I feel AMAZING. And I’ll take that. Some magical alchemy is at play, something is working. For all I know the trial could be giving me a placebo. Who knows, who cares? I believe it is going to work, just as I believe that the ancient traditional healing methods of the Wixarika marakames (indigenous Mexican shaman) will work, just as I believe that my mind is a powerful medicine, just as I believe in the power of plants to heal, or the power of the prayers people have been saying for me. I believe that there are ways to healing that we in modern western society as yet do not fully understand. Or perhaps we have forgotten. The light of hope still shines when I look at the horizon, long after the sun has set on the conventional medical establishment’s options.

All I know is that right here, right now,         IMG_3323

this moment is beautiful and life is sweet.

I pray life is sweet wherever you are.

Pass the chocolates please.

3 Ways of Healing – #Medical

butterfly 2

Perhaps if I had been born in another time, another country, another town, in another family, with another name and the planets had aligned in the heavens in a different configuration, then maybe none if this would have happened. I would not be the person I believe myself to be. When I look in the mirror who would I see? Perhaps I am him, or her. Perhaps I am you. My life would have followed another path with another story,  a different set of characters, setting and plot.  A different beginning, middle and end. Not better nor worse, who’s to say. Just different.

Perhaps in the thread of time, one decision made differently, a glance in an alternate direction, a no instead of yes. A hello and not good bye. And  perhaps I wouldn’t now be perching on the side of the bed, and not for the first time this month, head resting on a pile of pillows, with a needle and catheter inserted into my back between my 3rd and  4th ribs draining what will be a litre of fluid from the pleural lining of my lung. Another litre of fluid. That’s three litres  in the last six weeks so far. There’s more yet to come, but that is in the future, a life not yet lived and breathed.

canute_beach

I am awash with fluid. Water water everywhere so the saying goes. I am like Canute raging  against an incessant and unremitting tide. Impotent and futile against the power of nature and the elements. The lungs, according to Chinese medicine represent grief, and as the sea of sickness seeps from my body drop by drop I feel the release of decades of grief held vice-close, of sadness, of fear, of shame, of guilt, of secrets, of abuse, of self blame, wrong choices, missed opportunities, isolation and silence.                                                                                             Oh the silence is deafening now,  drowning out the white noise that butts and rasps and rattles in my head like a hornet trapped and angered. A pestilent and painful reminder that I too am trapped, that I too am pestilent. Looking out upon the life I want to have that lies beyond my reach. Out of my grasp. On the other side of the glass. Slipping through my fingers. Nothing to do but surrender, be here now, allow the grief to subside like a receding tide, when all is revealed and I can breathe again.

Forty minutes and three coughs later and I am done. The cause of this, my latest incapacitation, the breathlessness, the palpitations, the discomfort, pain and physical restriction when life is reduced to a corner of the sofa and dependency on others, lies malignantly in a plastic bag upon a metal trolley, not yet for discarding, but for analysis, searching for more clues in the crime of my disease.

Beside me, Dr H. wraps things up with a manner at once professional, friendly and endlessly reassuring. We have  met several times over the last year,  despite  my best intentions not to, and  he maintains  an easy dialogue throughout the  procedures that both distracts and normalises this most un-normal of circumstances. As bedside manners go, he rates a 10/10. As I think it, I hear the words fly clean out of my mouth and into his ears.

Drain removed, plaster applied, all swabbed clean and tidy a thank you to the team and I am wheeled from day theatre down the corridor to recovery before the next victim, sorry, patient is wheeled in. Recovery consists of spaces for four patients and Eric* the nurse in charge.

“Hello again” I say

“Hello again you” he replies. “Back again? How are we today? Can I get to a drink of water?”

His accent places him in the region of the Philippines. Like so many of his NHS colleagues I have had the good fortune to meet, who come from South East Asia, Thailand,  Africa, the West Indies,  eastern Europe,  Spain, Greece, India,  China, Hong Kong,  I am grateful he made the journey to work here, healing the sick of Great Britain. Clearly we cannot sustain this great and wonderful institution alone. Our global friends are a intrinsic to its health. And for all our sakes the NHS, needs saving, before the disease of neglect and lack of funding and secretive selling off kills it off once and for all. Where would we be, where would I be without it? Not here and now, that’s for sure.

Eric turns the monitor so I can monitor myself. My oxygen sats read 92, I know they won’t want to let me go until they each around 98. Eric remembers I like a challenge! Tentatively I begin to deepen my breath, lung slowly re-inflating for the first time in weeks, like a butterfly unfurling from cocoon, spreading my wings, come on, come on, I will myself,  that’s it, 93, 94, you can do it. Heart rate is starting to come down from over 100 bpm, it has felt like a runaway train the last few weeks, even when stationary. Is this what it’s like to feel human again? I’m  almost scared to remember.

Eric bustles back with a poly cup of water, de- licious.  He sings quietly under his breath to the retro tunes whispering forth from the radio, to my amusement,  he really does seem to know every song.

“You missed your true calling” I joke, humour returning in equal measure to breath.

“I think  you’re right” he laughs

Dr H. Pops by to check up on me just as my sats reach 98. Job done we both agree.

“No offense,”  I say, “but I hope we don’t meet again for  very long time,”

He smiles, as I have said this very sentence on several occasions over the last year. What I really mean, is thank you thank you thank you. Thank you for making me feel so much better. Thank you for the gift of modern technology, science  and medicine that found its way from you to me and means I am not drowning in my own water, but alive and kicking. Thank you all from the bottom of my heart. He departs taking my gratitude with him, radiating 10 out of 10

“OK young lady, you’re looking good, home I think.” Says Eric

“Yes please,” I say to no one but myself.

A new song starts up on the radio, Eric sings along,

“At first I was afraid I was petrified,

La la la Laa  la la la Laa la la la lala laaa….”

HEY! Wait for me Gloria, I’m just putting my skates on,

You sing it girl, you sing it loud. And she does ,

“I will survive! Hey Heeeeey!”

And with that I pirouette into the corridor and back into my life.

butterfly

(c) Leah Bracknell

*name changed

Butterfly photographs: Seb Janiak

Feather

IMG_3039                                                                            (Lion of Judah – Sophie Wilkins)

Don’t take away my hope,

it isn’t yours to steal

Stop right there

Drop it!

Back away

Slowly

Keep your hands where I can see them.

Don’t take away my hope

with your “I’m so sorrys” and your pity eyes

with your “get your affairs in order, and line up your ducks 1-2-3”

Oh I’ll line them up alright and shoot their bloody heads off.

BANG BANG BANG

With your “we’re running out of options”  that leads me up a cul de sac,

that switches off the light and leaves me groping in the dark

while the walls press in.

Who are you to decide if I have a right to hold onto hope?

That ineffable essence  that Miss Emily D once upon a time called

“that thing with feathers that perches on the soul”

YOU may give up on me , YOU may down tools, it may be job done for YOU

But I do not see my life in A to Z .

I don’t want to fit in your box where life is limited by the limitations of your linear

expectations.

I do not want to fit into a box full stop.

For when you strip away hope from the hopeless there is no life.

And life is more than flesh and breath

Spread the wings and step outside and you will see

possibilities of love and joy and magic and a rising sun and all that

resides in the name of hope.

Maya told us she knew why the caged bird sings,

and now I do too

For you may cage me up in your story of finality,

But I have the key that opens  the door from time to time into the halo of divine grace

where I can shelter from the storm.

And I remember nights so golden when the full moon beamed

to light my way

across the desolate moor so I did not stray from the path into danger,

shone as bright as day she did.

And I remember stars so twinkle twinkle

from a billion years away

pinprick  beacons like watchful eyes and fireflies

blinking at me like they blinked at my ancestors in days gone by and by.

Highways and skyways

And how they sang to me of how it is, and how it was, and how it shall be

That we are perfect, that all is perfect and exactly as it is meant to be in the

texture and tapestry  of all time,

And that we matter no more nor less than we do,

But less than we think we do.

And that matter does not matter

That we are come and we are gone

That we are part of it all and part of nothing

Joined in union eternally where beginnings and endings are just how it is meant to be.

And you and I are but a blink of an eye.

And all that I love

and where it has the grace to fall and be received – is all the hope I need

for it is as true as your fear is false.

I am sad for you, not mad at you

and I stand up and claim it back.

And the ancestors whisper in the trees

that we are all just here to become a memory.

As I look up

the skies are raining feathers

I watch and I watch

as patience rewards

and

one fine feather drifts down and perches on my soul.

 

 

 

Death and the Elephant

elephant-in-the-room-wip-leah-saulnier-the-painting-maniac

There are some days not quite as bright as others, even when the sun is shining. The dark clouds of grief, or fear, or anger, or helplessness just roll on in like an impending storm to obliterate any rays of hope and possibility.

The elephant in the room looms impossibly loud and large, knocking the china flying like a bull in a china shop. The world stands still but you can’t find the exit. And the roller coaster lurches on, up and down, your face a rictus of terror, a silent scream, on this white-knuckle ride.

Oh for a spoonful of normality. When problems were just problems, and not everything was reflected in the mirror of mortality; not everything had a full stop.

Days when it is too painful to look back and too painful to look forward, that find you adrift and isolated from the everything you treasure. No analgesic to numb this wound. This is the deepest cut.

On days like this, collar turned up, back to the wind, your coat of self-pity a defense and a refuge, beneath which lies your nakedness and vulnerability and the scars of your human frailty.

And as I lie with this unwelcome bedfellow, who whispers unsweet nothings of nothing into my ear, fuelling the terrors and painting the world black, willing me to break, seducing me down the path of hopelessness and despair, I chose surrender. To surrender to the uncomfortable emotions, to honour my vulnerability, to let the cracks show and the tears flow. There is no shame in admitting that sometimes you hit a brick wall, that putting on a brave face just doesn’t cut it, that you want (and do!) to throw all your toys out of the pram.

Because it’s hard, isn’t it? It’s hard to keep on keepin’ on, it’s hard to GLIDE, it’s hard not to see the glass half empty, when you have been issued a sell-by date, and options – a word that can both give and eradicate hope – are running out. It’s hard not to be blinded by the PR, that cancer is a one-way ticket to you-know-where, that life with cancer is akin to going to war, combat unarmed, a battle, a fight against a hostile and deadly assassin. The unexpected visitor, who creeps in unannounced and univited to hijack your health, steal your future and evict you from your life. Who tries to recast us as victim, as tragic, as less than we were, not merely in our eyes but in the eyes of others, whose gaze as it falls upon you turns to one of pity, and fear. For the contagion of cancer is epidemic – it spreads from the unwitting host to friends and family, as if cancer contaminates and infection were a natural consequence, and suddenly one finds oneself in isolation when people can’t see beyond their own relationship with mortality which arises from a cultural fear of death.

Yet, is it death itself we fear? Death has become a taboo – a dirty word, something to be hidden away, expunged, talked about in hushed tones. Much like cancer, have you noticed that? How people change their tone of voice into a “cancer voice” How people brace themselves to see you, because they are never quite sure what to expect? The extra vigorous hug that lasts just a little longer than before. The surprised/relieved “don’t you look wells” The long goodbye – in case it’s the last time? Treating you like a china ornament as if having cancer might cause you to shatter into a thousand fragments right before their eyes.

A person can become concealed beneath the shroud of cancer: the myths, metaphors and cultural expectation of cancer and its association with death play to our deepest most primal fears. This, I believe is also an epidemic dis-ease: the “elephant in the room” which goes by the name of death. But rather than ignore it, which is futile thanks to its unswerving inevitability, let’s dare to look it in the eye. Ignoring the prospect of death cultivates a terrain of fear watered by our anxiety and ignorance, is it not better to explore what death means to us in order to navigate our way through to calmer waters?

My first experience of death came from the east. My maternal grandfather who was from China passed when I was very young. But I remember aspects of the ceremony which would be alien here in this country, but engage us with the passage and process of life and death. Offerings are made to ensure the deceased is well cared for in the afterlife, houses, money, cars, even mobile phones cut from paper are burned to symbolise the things they may enjoy or require. Families regularly tend their graves with offerings of food and incense to ensure they are well fed, and so that they know they are loved and missed. There is nothing a spirit loves more than to know they are still remembered and cared for. On some level it demystifies the whole process, and gives those left behind a means of continuing a relationship, not merely of grief, but of love and care and remembrance.

shaman art 7

The way I see it, is that death itself is not what I fear, death is a bridge between worlds: this life and whatever lies beyond. It is a gateway, a portal through which our soul, our spirit, will pass, in the same way we passed from some other time and space in order to be born into this life. I have smelled death close. Almost 18 months ago now, when it tapped on my shoulder and called my name, enticing me Pied Piper-like to cross over; but thankfully my saviour appeared in the form of Dr B who performed a life-saving procedure, and aided by my allies from the invisible realms, ensured that I hang out in this life for a while yet.

 

So, moving on does not scare me. I have glimpsed enough of the world of spirit, through working as a shamanic practitioner and healer for several years before I was diagnosed, not to be afraid. To understand that we have willing and able allies and ancestors in the invisible realms beyond the veil who want and yearn to assist us. And that, we too, when we pass on, may be able to assist those that remain and our ancestors yet to come.

In order to corral the landslide of invading emotions, let’s separate them out, and look at what’s really going on. When emotional response such as fear, anger, grief, bitterness and so on lock horns it is easy to become overwhelmed and enmired in confusion; one can become entrenched beneath the weight of despair which results in an inability to know what to do and may culminate in the futile resignation to give in. It’s unsurprising, there are only so many times you feel you have the energy and will to deal with it.

Let’s look at two of the most common sources of anxiety for someone with cancer, especially if, like myself, your diagnosis is staged 4:

Leaving loved ones. And leaving full stop.

No one wants to leave the people they love. The imagined pain of that final separation is intolerable. BUT, what is the emotion? If we can pinpoint what it is we are experiencing, perhaps, we can find a means to make peace or honour that truthfully, rather than remain stuck in the overwhelming storm inside heads, the resultant stress of which can be as destructive and as debilitating as the cancer itself.                                                              So ask yourself, how does it make me feel to leave my loved ones?  Afraid, angry, sad . . . etc?                                                                                                                                                    Using myself as an example, I can see that it is not fear, nor anger right now, but sadness. It makes me sad to think I may have to travel on alone, without the companions from this life that I cherish so dearly. Deeply sad. But, this is so for everyone, cancer or no cancer, one day, we all have to part and move onwards on the next stage of our soul’s journey. And who is to say that one hell of an extraordinary adventure doesn’t await us? Unlike me, you may not believe in a spiritual journey, an afterlife, but what I do know is that we leave a little part of ourselves buried in the hearts of those we love, that we live on in their memories, and that while we can, all of us, invest in their futures by expressing our love and gratitude for them.                                                                                    It strikes me how afraid we are of expressing what we truly feel to others, of showing or talking of love. Of all the fears we cling onto, don’t allow this to be one of yours. It is the greatest gift to be able to freely express your love, and an even greater gift to receive.

As a parent, one’s fear of dying multiplies. Actually, I don’t know if that really is the case, but it’s the only perspective I have. In order to put a positive spin on a devastating situation, I am only grateful that my children are adults, they are on their way, they have weathered the storms of childhood and adolescence and beginning to carve out lives independent from parental influence. That I may not be around to witness milestones, or be a shoulder and support for whatever challenges life brings motivates me and inspires me to live by example, to pay it forward. If I can have courage in the darkness, if I can face the challenges that I will meet, if I can enjoy my life, have adventures, turn tragedy into opportunity, show them that  no matter what, it is possible to rise, be empowered even when the winds are against you, be creative, be of service, contribute to the community, to pick yourself up and dust yourself off time after time, to acknowledge truthfully when it hurts, to ask for help, to be resilient, to laugh, to cry, to dare to love, then, then I am still doing my job, from that little place in their hearts where time and space are eternal.

And as for leaving. Well, I won Best Exit once, back in the day at the Soap awards, for leaving Emmerdale so dramatically and efficiently. I joked at the time it was a “glad to see the back of me” award. This time I am blowing up nothing except expectation – the expectation that cancer is a thief on a mission to steal my life. The expectation that one must follow the rules both of the disease and how one is required to behave when one has the disease. The expectation to go off and quietly die, without challenging the system to be a good patient, to follow the rules and embrace the noble victim personality.

Am I afraid to die? Of death itself – see above, of dying? Yes, of course, the uncertainty of the “how” is a rational fear. The universal hope for us all is that it is quick, painless and preferably in our sleep, but I suspect that the road will be a little less predictable. And a little less cinematically poetic than prosaic. What I would hope for is a “conscious” death. In which acceptance replaces anxiety, and love and grace are my companions.

shiva

Another word for human beings is mortals, a word that contains the word death, a reminder that we are all on this cycle of birth, life and death. It’s how we fit into the rhythms of the universe, ever replenishing and renewing, all of nature, and indeed the cosmos is subject to this law of birth life and death. I look to Shiva for inspiration, the Hindu God who represents creation and destruction and everything in between, and who in his incarnation as Nataraja, Lord of the Dance is believed to release mortals from the snare of illusion: thus instilling an understanding of our place in the cosmos.

That cancer has severely compromised my health cannot be denied, but my spirit is intact. Bruised, battered and in need of some TLC from time to time. But please, please cancer is a physical malady, do not give it permission to infect the beauty of your spirit. Let cancer become your reason to be everything you hoped you might be, why not? There is  nothing to lose and everything to gain from discovering just who you are and what you are made of and celebrating life with every fibre of your being.

What futility to fear the inevitable and unavoidable. It is energy wasted and time lost. However, don’t reprimand or blame yourself when you become lost in the fog. We all need to surrender to that at times. Remember to be gentle and compassionate with yourself. It’s OK to struggle. It’s really quite OK.

And try saying  to yourself:

I deserve to live.

I deserve life.

I am worthy of love.

I am loved.

Take as often as required!!!!!

And go tell someone you love them, starting with yourself.

I’ll go first: I love you. Now pass it on.

Namaste – a thousand blessings.

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