Chemotherapy begins today.
More of that as this post proceeds.
One of the most consistent tropes of all establishment discourse is that there is no evidence to support a particular course of action, contention or idea. Facts, it is said, support good practice and policy, must adjudicate between differing opinions and should in general provide the basis for intelligent, rational and sensible debate.
This is a variety of empiricism.
In the old days, before the so called Scientific Revolution, when philosophers and theologians still had power over ideas, empiricism was based on experience. In modern times, empirical perspectives base themselves exclusively on evidence, facts and data; they must also therefore define, describe or determine the means by which evidence is gathered, facts uncovered and data produced.
As a consequence of this narrowing, modern empiricism faces a serious problem, for it excludes many ways of stumbling upon truths; not only does it undervalue empirical material that is not generated by the methods of which it approves, but it also rejects out of hand conclusions that are arrived at by processes of reasoning alone.
Apart from during the ramblings of establishment figures burbling on the wireless, I am most sensitive to this empiricism when I hear it in reaction to suggestions that so called alternative treatments can contribute in any way to health. This has come up again, big time, in relation to the chemotherapy; for there is no evidence to suggest that any kind of dietary supplement or plant oil will help counteract the effects of this medically sanctioned poison. Because we don’t know about how these may or may not interact with all the necessary chemotherapy medication, it is advised that all such alternative stuff – whatever it may be – should not be used at all for the entire course of the treatment.
The phrase we don’t know wields considerable power. It calls forth an authority within society, both a repository of established knowledge and a repertoire of methods of producing further knowledge, by the use of which it is possible also to perpetuate ignorance.
Because we do not know what will happen, we had better not do anything that will enable us to find out.
The phrase has always irritated me. Who is this we? What about my own experience? When did anybody ever ask me to contribute to what we know? Surely the knowledge that I have accrued with my own experience is as relevant as any to knowledge in general? Otherwise how am I to be included in the we and what then would be the relevance to my life of what we don’t know?
This we don’t know is only a manner of speaking, a shorthand way of signifying the power, authority and complexities of scientific investigation and knowledge production. So believing that my own personal experience must contribute to general knowledge is only naive individualism, a petulance; it is as irrelevant to what we know as the personal experience of everybody else. That is not the way society or science works, the knowledge accrued by the social body explicitly excludes all personal, sensory experience – the ordinary everyday perceptions of seeing, smelling, touching, hearing and so forth.
Scientific knowledge is based instead on the results of publicly repeatable procedures, studies, surveys and experiments. These follow strict methodological guidelines and are motivated either by recurring anomalies in established knowledge or by new empirical discoveries.
That which counts as evidence, that which can be said to be known and which enables individuals to say that we don’t know, or that there is no evidence for holding an opinion, taking a course of action or pursuing any particular policy, lies at the end of an extremely long and complicated series of social, political and economic processes that have already excluded a great deal. It is assumed without any critical reflection that this process will produce accurate, authoritative knowledge.
I believe I put the matter quite succinctly in a previous post:
… nobody objects to scientific rigour being employed when carrying out analyses of substances purporting to treat disease, but it is stretching belief in the scientific project to suggest that this is instantiated by default and operates flawlessly for the good of all in the monstrous assemblage of powers that go by the name of health care.
In the process of writing out my experience of conversations with oncologists and other medical professionals, I have come to many conclusions, some of which have been confirmed or become more nuanced, and many of which I have subsequently rejected in favour of new ones. None of these count as knowledge though; according to established criteria, as they are based only on my own experience, they must be classified as “anecdotal” – a lovely little word that cuts both ways.
Although clearly meant to signify a kind of marginal or peripheral status in relation to knowledge, it also empowers experience to recount anecdotes, to tell stories and to present new narratives. And in the course of this, to draw comparisons, to describe differences, to reflect upon what it thinks it knows, to examine itself for general truths, to reconsider what it thought to be the case and to come to new conclusions. However marginal it may be in relation to scientific knowledge, this experience is common to everybody. We all tell stories about our experience, think things through and form opinions, which we are subsequently able (if not always willing) to reject in the light of new experience.
I have realised for example that the determinism I thought to be implicated in or implied by the theories and ideas of medical science are actually an element of the protocols used to apply them. The apparently inexorable forces that determine the progression of disease are not natural but rather social. So that if there are mechanisms at work anywhere, these are not an expression of biological functionality, but a requirement of political expediency, an effect of social systems. Reality itself is more fluid than can be covered by mechanistic metaphors; as every mechanic or person who works with machines will attest, even machines are not mechanistic; the behaviour of each is a function of its specific trajectory of use, and only at the end of the production line, only before it has been put to use, will any machine of a particular sort be more or less the same as any other.
No less important was the discovery that all these putative mechanisms, all these ideas about how the living world and everything in it are machine-like (the mechanisms sought by scientists to explain the causes of things, the metaphysical commitment to blind mechanical processes, the reductive methodologies, the atomistic ontologies) are always and everywhere subverted by ordinary, common or garden, agency, by the power to reflect upon experience and to behave in keeping with natural events and forces. This is the same agency I discovered the medics to be relying upon in their treatment of my spinal cord compression, thus further supporting my conclusion.
I have accrued many arguments against mechanisms and have probably expressed these thoroughly in previous posts, and yet mechanisms still dominate conventional thinking. I have also railed against the hypocrisy and contradictions of this establishment empiricism, in particular in relation to feco (full extract cannabis oil). In combination, these two -isms perpetuate a pernicious reductionism that narrows down knowledge, thereby excluding not only much of what ordinary folks consider common sense, but also a great deal of ordinary reality.
Readers will perhaps remember an indignant woman who last summer shouted so loudly she was given quite a lot of media attention because her epileptic son’s supply of feco had been confiscated as they came through the UK border from Canada. Just the other day she was briefly on the wireless again, being asked to remark upon the opening of a clinic in Manchester specifically dedicated to treating people with cannabis derived preparations.
Clearly, she had been invited onto the programme to celebrate this great leap forward in health provision. The mighty John Humphrys was however rather crestfallen upon discovering that she is as furious and enraged now as she was then. The problem, she tried to explain, before being cut short, was that only private patients, able to pay the substantial price of a full course of treatment will have access to feco. NHS patients who go to the clinic are meanwhile prescribed one of only a few available pharmaceutical products containing only a limited number of the many active chemicals found in feco.
The reason for this is that GPs work under strict government guidelines, which state that cannabis based medication can only be prescribed after other treatments have demonstrably stopped working and if there is clear evidence that it will have a positive effect. In fact though, GPs have no idea of what they could be prescribing, for as far as they are concerned there is no evidence of what feco can or cannot do. The reasons for this are outlined quite clearly in the Cancer Act. Only pharmaceutical companies can advertise to medical professionals what can be used to treat cancer, and thus far only a very few of their products have been licensed for use, all of which exclude all but a few of the active ingredients.
Some months after the original story aired, I listened with great interest as a professor of clinical medicine at one of the big London Medical Schools, with a particular interest in pain, was interviewed on the wireless, by either Eddie Mair or Evan Davis – I cannot remember now which. He was on the whole sympathetic to the legalisation of cannabis, receptive to the anecdotal evidence he had heard thus far and keen to undertake research.
The problem he said was that in the wake of the aforementioned Billy Caldwell case, GPs have been bombarded with requests from people suffering from chronic pain to prescribe them cannabis. The internet is replete with ‘information’ about cannabis and what it can do, and there is a fierce, vociferous lobby promulgating the idea that it is a miracle cure for every ailment under the sun. The internet is also crawling with scumbags offering snake oil to the vulnerable at a great price. It is therefore absolutely crucial that controlled research be carried out into what it can and cannot do; for, he said, there is obviously a particular compound in the cannabis plant with powerful therapeutic properties. This needs then to be isolated experimentally and then used in the production of medicines that will have determinate effects. Until such time, there will be no evidence available to GPs or other doctors confronted by requests from people in genuine pain and distress for something they have read about on the internet, and about which there is allegedly very little evidence based knowledge.
At this point my hackles rose and my sympathy for the good professor vanished. Clearly he was so thoroughly immersed in the establishment view of things that he was unable to see the world in any other way, an unwitting advocate of the medical creed in which all bodies are essentially the same, work according to mechanical processes that can be brought under control with medicinal or surgical interventions.
It is clear to me on the basis of my experience of talking about my disease and its treatment to oncologists that they do not believe anything of the sort. Many other doctors too have explicitly told me that they do not believe such a thing either, that the complexities of the human body are anything but machine like, that they always rely on the natural healing powers of individuals and know that each will react differently to every medication. And yet the methodologies of scientific investigation assume a strict and rigorous mechanism under which all bodies are exactly the same.
Like the mechanism I once thought to be part of the scientific knowledge of bodies, this mechanism is an effect of methodological, social and political processes. In this case though, much more pernicious. There is a considerable body of opinion that believes pharmaceutical companies deliberately suppress investigation into anything but single compounds in order that these can be patented and then used in the production of saleable drugs. There is also a certain amount of evidence to support this idea. It dovetails nicely with the idea that pharmaceutical companies are thereby excluding certain potential and possible cures for cancer so that people can be kept alive for longer in a state of medicinal dependency in order to maintain profits. Whether or not there is evidence for this is difficult to judge, but it is a conclusion many have reached.
The brute truth of the matter is nevertheless quite palpable. There is absolutely no reason under the sun that medical investigation should only be conducted in pursuit of single compounds or molecules, no reason at all why multiple compounds combined in a single preparation cannot be investigated for their therapeutic properties under strict methodological guidance, no reason at all to suppose that there must always be a particular compound that does the work, nor to believe that it will have the exact same effect on every person who takes it.
Anybody who has read critically any of the substantial literature on feco that is freely available on the internet will have learned of the cascade or entourage effect, the idea that combinations of the many different compounds contained in cannabis plants work together to do the work of healing. It does not matter how this works, although the predominant theory is that the chemicals of the cannabis plant lock into the hitherto under researched endocannabinoid system, what is more important however is that it works.
Any clinician seriously interested in the possible therapeutic benefits of feco would do well to listen first to the anecdotal evidence that is out there before conducting more controlled studies to examine which varieties and preparations do what to which diseases – just as Jeremy Rhyming Slang did when he was Home Secretary and overnight reclassified medicinal cannabis from snake oil to miracle cure. As with most things the now Foreign Secretary says and does, he had no idea then what he was doing, nor what this would unleash – presumably he was, at least publicly, unaware that he was simply bowing to populist pressure.
The obsession of establishment empiricism with facts, data and evidence, at the expense of ordinary experience actually does violence to nature; it creates a monstrous simulacrum of reality that fits very nicely with the interests of the pharmaceutical lobby, keeps a lot of people in employment and maintains the fiction that health is a matter of swallowing pills alone. Until such time as it broadens its view, moves away from reducing complex living processes to blind mechanics, it will only provide further evidence to those who believe that the whole apparatus is designed to perpetuate capitalism’s most truculent hold over the mental environment – the power to determine what happens to living bodies.
For my own part, I do not believe that the situation will change much in my lifetime. I do not believe it will be possible for anybody but those with a great deal of money, or generous donors, to access feco. I do not believe that welfare state or insurance based health services will sanction the prescription of feco very soon. It will take a great deal of courage on the part of any specialist or consultant working within any health system that deals with ordinary people to let go of beliefs and assumptions so deeply ingrained that they are now invisible, and to prescribe feco. This would be to risk their careers, endanger ostracism from the hallowed ranks of the medical community on the basis that they are promulgating pseudo science, generating false evidence, facts or data, not in keeping with what is permitted. History undoubtedly moves along, but it often takes generations to shift opinion – particularly when to do so requires letting go of the most cherished beliefs, not to mention confronting vested interests embedded deeper than a tick on an old mutton ewe.
I remain fairly neutral on the efficacy of feco. It is obviously a very powerful remedy but I balk at the idea so assiduously held by the zealots that it can cure everything. The stuff appears to have become a pawn in a complex ideological battle, straddling several differences of opinion and interest, all of which can be boiled down to an ancient argument about what is true and how we know what truth is, how we apprehend, think about and describe it, and who controls it. Is it that which can be observed from a distance, by a coterie of men in command of special looking and measuring devices and fluent in technical languages? Or is it that which emerges when we submerse ourselves in the infinite becoming of life, to look, listen, hear, see, feel, touch, grasp, reflect upon, love ….?
…. personally I too believe in a variety of empiricism – despite the apparent evidence of this writing that narratives are built up by combining experience with reason, that conclusions are reached, knowledge produced and courses of action justified in a complex interaction between what there is and how it is thought about.
What there is is clearly much more than that can be expressed with scientific facts, data and evidence; but in fact, every moment of reflection is absolutely unique, every particular mental event, every phenomenon, every brute, raw experience is utterly different from every other. The absolute infinitude engendered by this notion is very difficult to grasp, impossible even, but this does not mean that we have to chop up what is available for experience in advance into processes and mechanisms, all of which must be the same as ones that have gone before, nor that we cannot continue to do science mindfully by observing what there is without getting too hung up about what is thought about it – what there is will make itself manifest to those with an open mind. Absolute infinitude certainly does not make it impossible to experience anything at all. In fact the complete opposite is the case.
Today I begin a course of chemotherapy. Medical science believes that what is going to happen is something that has been done many times before, that the outcome is predictable, in my case extension of life to between 18 and 22 months beyond what nature has in store. I do not have such faith. I do know what is going to happen, I do not experience tomorrow. I do not know when I am going to die. Nobody does.
When the alternative is a long slow decline into medical dependency and death, I find it more uplifting to harbour a different, much stronger conviction. That I am alive now, that this is all there is, and that this is different from all that has gone before.
A note on the photos
Usually I do not describe or refer to the photos dispersed throughout these more reflective and speculative posts. They are intended as a kind of punctuation, a way for readers to pause to reflect on what they have read, to ground the text somehow, return it from the abstract to immediate experience of the planet and all its beauties. Usually the photos are chosen without regard to when and where they were taken. On this occasion however, all the above photos except the one of the new moon through the trees were taken on a visit last Saturday to Kinshaldy Beach at high tide.
This is probably my favourite place on the planet. I have been visiting here for more than fifty years. During that time it has changed beyond all recognition, and in fact every time I visit, it is different. The sands of the sea and the effluent from the rivers Eden and Tay swirl around and pile up to produce changing sandbanks which offer different routes for incoming tides. In Roman times the shoreline was more that two miles inland of where it is now. In my lifetime new dunes have formed and new brackish lagoons created and the shoreline is at least 500 meters from where it was when I first visited.
It the context of this post, this place serves as a metaphor; the slow but radical change that does actually take place on this planet is a reminder that history moves on. Inexorably. The trick is to find a way of joining in, of being the change, participating rather than being swept along.