I 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The writing on the wall two years ago was very different given that the statistics, as out of date as they are for stage 4 lung cancer, predict a frighteningly brief median survival time of 8 months.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.
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.
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.
Labour 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.”
(Microscopic cannabis photos : Ted Kinsman)