Callie Blackwell watched helplessly on as her son came so close death that doctors said there was nothing left to do but pray.
It’s understandable, then, that she has become such a huge advocate for the medical intervention that brought him back from the brink.
After four failed transplants, young Deryn (pictured above on the right, with his mum and brother) lay gravely ill in hospital, having battled leukaemia and being left with no bone marrow. A cocktail of pharmaceutical drugs had left him in a comatose state.
Some months earlier, Callie used natural products including Manuka honey to help reduce Deryn’s virus count. With every other option seemingly exhausted, she decided to try something she had, until that point, only ever read about online – cannabis.
“I just thought I may as well try it, we had nothing to lose at that point. So I tried cannabis tincture and within half an hour I saw a difference. Shortly afterwards, Deryn was refusing morphine and pharmaceutical drugs.
“Five days later, we saw his bone marrow kick in. I continued to use cannabis three or four times a day with him and he came off all of the other drugs,” she recalls.
“The medical team said it was scientifically impossible, ‘it’s a miracle, there’s no other explanation’. Obviously I couldn’t tell them what I had given him but I knew cannabis had saved his life.
“Since that time, I’ve spoken to his doctors about it and most were quite open to the idea, but one of them just puts his fingers in his ears.
“He just does not want to hear about the very thing that saved my son. To help people have the choice to use cannabis that they are currently being denied is what inspires me every day.”
Callie documented Deryn’s miraculous recovery in her book, The Boy in Seven Billion.
In the six years since his survival, he has regained use of both his knee and hand which medics warned would be lost forever.
His mum, meanwhile, has become a prominent campaigner for the medical use of cannabis and for people to be allowed to produce cannabis themselves.
Indeed, the right to ‘grow your own’ is the focus of Callie’s indomitable efforts on behalf of families across the UK.
“I want people to be able to grow their own without fear of prosecution. Prohibition causes fear and paranoia comes from the fact growing cannabis is illegal.
“I used to grow my own for Deryn in my shed and every time I heard a noise I was worried it was the police and I was going to be arrested.
“But not only would they take my son’s medicine away, they would take my son away and put him into care.”
In fact, so great were Callie’s fears of prosecution over growing cannabis, that they triggered a nervous breakdown.
“Every time I spoke to someone who came to me for support, and who I would help under the radar, I wondered whether they were secretly a police officer.
“That is an awful situation for anyone to be in and I know because I have been there.
“But ultimately, my need to tell people about cannabis and to help people was something I couldn’t keep to myself.
“Now, I believe being so vocal about it is almost a form of protection for me.”
Having long spoken out about growing her own cannabis, Callie now encourages others to follow her lead.
“I actively encourage people who come to me for help to grow their own cannabis as it’s the only way to ensure you have your own supply and that you know what you’re getting.
“It’s very important for safety and for harm reduction. It’s really not advisable to get it from a street dealer as you have no idea where it has come from,” she says.
“From a cost perspective, it’s much cheaper to grow your own – street cannabis can cost anything up to £20 a gram – and you can make your own bespoke strain.
“There are over 5,000 strains and you have to find what works for you. For Deryn, I recently grew him some lemon diesel oil, which he knows is very good for mental health and it works well for him.
“It’s very important that you try different strains and find what works for you, then you can have your own supply.
“However, I do think that it’s such a shame that the situation remains that while I’m very openly growing my own, telling the whole of Charing Cross police station what I’m doing after I was arrested for protesting outside Parliament, nothing happens to me.
“If it did, I’d make sure I went down kicking and screaming and making a real fuss.
“But if the man down the road wants to grow a bit of cannabis, he’d be arrested and made an example of. That’s very frustrating and it’s not fair.”
While legalisation of growing your own cannabis is her goal, Callie is adamant it should be done in the best interests of those who will benefit from it on a human and medical level; rather than corporate businesses who will profit financially.
“We know the corporations are going to come in to this debate, but it must not be to the detriment of people who have been researching and living in this area for 50 years of their lives.
“We have become the experts and we know what we are doing better than they do.
“We don’t want it to be legalised with parameters that suit the Government and the pharmaceutical companies.
“We want people’s health to be put back into their own hands so they can be left alone and be healthy.
“There are so many conditions which could be treated by people on their own rather than going to the NHS for help – we would save the NHS a huge amount of money if we were allowed to grow our own.
“But we also have to be careful that if this does become reality that we have the provisions in place to protect us and our rights.
“It cannot be a case of you’re allowed to do it but you can only grow one strain and buy equipment from these certain shops.
“This has to be beneficial to all of us and we have to be allowed to discover what benefits us for ourselves.”
Callie’s motivation is simple, she says – helping people in ways she can.
“I believe in freedom of choice and to be given autonomy over our own bodies. If people want to have a vaccination or they don’t, that’s fine.
“But people have a choice. And I believe that should be the case with cannabis,” she says.
“I was in the healthcare system for five years with Deryn and I know the incredible amount of stress it causes for your child to be so ill, and the stress that is caused by using and growing the medicine you know has saved his life.
“I get 10 or 15 messages on average every day from families who are desperate for help, and as well as helping to supply them with oils, I guide them through the grow your own process.
“I always say, ‘I can’t save you, but I can help you to save yourself’. I try and guide them all the way through so they can be self sustaining.
“When you’re in a medical situation you give over so much power to doctors, but by growing your own and self sustaining, that’s an important part of the healing process. Having this power to do this for yourself is a very important thing.”
Cannabis Health is THE UK magazine covering cannabis medicine and wellbeing from every angle. It is affiliated with the Medical Cannabis Clinicians Society and lists campaigner Hannah Deacon, leading expert Professor Mike Barnes and prominent doctor Dani Gordon on our editorial panel. For a limited time only, we are offering a free – absolutely no strings – annual subscription to the quarterly print title. You will receive four issues, delivered with discretion to your address – with no hidden fees or obligation to pay beyond that. To repeat, this is a 100% free promotion available to the first 100,000 sign-ups.
“The opioids have gone, and so has my pain”
Chronic pain has been part of Carol’s life since she was a teenager; but it wasn’t until her 60s that she discovered medical cannabis as a treatment for her fibromyalgia and osteoarthritis.
In my early teens I was diagnosed with osteoarthritis, just like my mother, grandmother and, later, my sister.
It affects the joints, and started out with lots of dislocations as a teenager and progressed to quite a painful condition.
Then in my 40s, I was also diagnosed with fibromyalgia, which can cause pain in muscles all over the body, as well as fatigue.
My two conditions have led me to gradually become less mobile, although I’ve been fortunate to receive joint replacements in my hip, knee, big toes, shoulder, ankle and heel.
Over the years I’ve worked my way through whatever drugs were recommended at the time.
But eventually you run out of options and, if you’re in a lot of pain, you will end up taking opiates like morphine or something of that family.
Among them was tramadol, which I came to realise was good for short term use, for example after one of my surgeries. But it didn’t really help me in the long term.
In fact, after taking painkillers throughout my adult life, I realised four years ago that none of them was really helping my overall health.
I was 65 at the time and would take co-codamol before I’d even got out of bed and then tramadol plus anti-inflammatories as and when needed.
Both conditions have flare-ups caused by various often-unpredictable triggers, including changes in the temperature outside. So I needed strong painkillers at hand all the time.
Opiates can be addictive but also they can become less effective so you end up needing more and more.
This means when you really need them to work, if you’re having a particularly bad flare-up, they may not be as potent.
I was also taking anti-inflammatories that could cause stomach ulcers and therefore required an additional medicine to protect against their side-effects.
I would come rattling out of the pharmacist with a huge paper bag with my regular prescription. I wondered whether putting so much rubbish into my body could really be good.
A colleague in my career as a healthcare manager first introduced me to the potential of medical cannabis as an answer to my problems.
It’s not something I had ever considered and I was very uncertain about it.
I think this was a hangover from being around in the 1960s where, in our world in a convent grammar school, it wasn’t the all hippie dippie and drugs that’s for sure!
Cannabis had a bad rep and even now when I tell people I’m taking it they assume it’s something you buy on a street corner.
Despite my conservatism and doubts, I decided that I couldn’t criticise something I’d never tried. When you have chronic pain, you will literally give anything a shot if you think it will help.
I was hoping for something that would be more effective than pharmaceutical painkillers, especially after flare ups, and didn’t want to keep adjusting the doses of what I was on to try to cope.
After some online research I bought a CBD oil made in Holland and followed the often-repeated mantra of cannabis medicine: ‘Start low and go slow”.
This means taking a very small amount infrequently and gradually increasing it until you hit the spot that’s doing you the most good.
I was quite surprised at just how quickly it worked. Within three weeks of taking it, I was able to ditch all the opiate painkillers .
It seemed I had, therefore, escaped the endless drive in pain management to find evermore powerful painkillers.
Having said that, I did need to add a stronger, low-THC cannabis medicine into my daily routine a year ago.
This is only available legally in the UK via a prescription and so I initially discussed it with my NHS pain consultant. While she had no objections personally, however, her hospital trust like just about every other one in the country, had a policy not to prescribe it to treat my conditions.
A private prescription, then, was the only option.
I’m currently taking four 50 mg capsules of the original CBD oil per day, plus 10 mg of the THC product.
I’m fortunate to have a pension to cover the £800 to £1,000 per month this costs, and I know that many in my position can’t afford this. It’s not cheap, but for me it has been life-changing.
As well as managing the pain, I’ve been able to sleep much better, and I’ve got none of the side-effects that can come with painkillers, such as an upset stomach or irritable bowel syndrome.
I still take anti-inflammatories for my arthritis but the cannabis doesn’t interfere with them at all. Also, I’ve gone completely cold turkey on the opioids and haven’t looked back since.
Carol is a retired healthcare manager who lives in Newcastle upon Tyne in the North East of England. Her name has been changed as she wishes to remain anonymous.
Behind the hype and headlines
This week our expert dismantles newspaper claims that a single dose of THC can induce psychosis in people with no mental health history; and that its effect is not moderated by CBD.
UK newspapers this week reported on a study which had two findings of particular interest to people using or hoping to access medical cannabis.
Firstly, it concluded that just a single dose of THC – the psychoactive compound found in the cannabis plant – can induce psychotic and other psychiatric symptoms in healthy adults with no history of a major mental illness.
Secondly, it stated that it “found no consistent evidence” that cannabidiol (CBD) moderates the effects of THC “in healthy volunteers”.
This may have been particularly alarming to parents of children with epilepsy who are taking medical cannabis containing low level THC.
CBD is believed to play an important role in counteracting any side-effects of the THC, thus preventing children experiencing a high, for example.
The study, funded by the Medical Research Council and initially published in the Lancet, and various newspapers, assessed the results of 15 previous studies involving 331 people.
Here Professor Mike Barnes, a consultant neurologist and chair of the Medical Cannabis Clinicians Society, gives his views on the findings:
“The report states that if a person takes THC in a single dose, its effect is not modulated by CBD given at the same time. So let’s look at the science behind that.
“CBD is a negative allosteric modulator of the CB1 receptor in the brain and elsewhere. That means CBD binds to the receptors that THC binds to, albeit in a slightly different place. So THC can’t lock onto receptors with CBD already bound to them
“The CBD doesn’t do anything to the receptor, it just changes it so the THC can’t lock onto it. Therefore if you give CBD, there is less effect of the THC because there are less receptors for it to bind to. That is a scientific fact. It’s not arguable, it’s not speculation, it’s factual.
“So therefore if you give CBD, we know there will be less THC effect. That is borne out in both human and animal studies. We know for certain that if people are on THC, there’s less THC side effects if they are on CBD at the same time.
“That’s known in the cases of children with severe epilepsy, for example, and that’s why the fundamental principle of cannabis medicine is that you start with a CBD product, build up that dose and then if necessary, you add in THC.
“If you are already on a background of CBD, you don’t get so much of the THC side-effects that you might not want, like the recreational high or the psychotic problems referred to in the report.
“Moving onto the issue of inducing psychosis from one dose of THC. We know that THC can cause psychosis but only rarely and only if you’ve had it before or if you have a first degree relative with it.
“So, if you’ve got a history of schizophrenia or psychosis, you shouldn’t really prescribe THC. It’s not an absolute contraindication, it’s a relative contraindication.
“For example, if you has a schizophrenic episode in your teens but you’re now 50 and you’ve got chronic pain, I would still prescribe THC. But if you were in your 20s and actively schizophrenic, with psychotic reactions, I wouldn’t prescribe THC. We’ve known that THC and psychosis go together for years, so that’s not new.
“In the study, they’ve assessed the administering of one dose of THC with CBD and concluded that it didn’t modulate the effect. But they also say in their own paper that the limitations of that study “contrast with the results of several other studies and may reflect limited power over the analysis”. So they accept the report is flawed.
“The findings on non-modulation go against all the known facts of THC and CBD – scientifically, and in terms of animal models and human experience.
“But also, a single dose doesn’t reflect normal usage which usually involves taking multiple doses daily.”
More info on the study
Researchers identified 15 studies that studied participants’ psychiatric symptoms following the acute administration of intravenous, oral, or nasal THC, CBD, and placebo in healthy participants.
The studies included scores for an increase in severity of positive psychotic symptoms (including delusions and hallucinations), negative psychotic symptoms (such as blunted affect and amotivation), and general symptoms (including depression and anxiety), which were compared after THC administration versus placebo.
A change in symptoms with an effect size of 0.4 or more was considered clinically important, and an effect size of more than 0.70 was considered a large effect.
The doses of THC in the meta-analysis ranged from 1.25mg to 10mg, leading to peak THC blood levels of 4.56 to 5.1 ng/ml when orally administered and 110-397 ng/ml when injected or inhaled.
These blood levels are comparable to those seen shortly after smoking a single typical cannabis joint containing 16-34mg of THC.
Compared to placebo, THC was found to induce significantly more severe positive psychotic symptoms (average effect size of 0.91), negative symptoms (average effect size 0.78), general symptoms (average effect size 1.01) and total symptoms (average effect size 1.10). The effect sizes remained significant for all types of symptom regardless of sex, age, dose, route of administration, prior cannabis use and tobacco use.
However, intravenous administration had more pronounced effects than inhaled THC on psychotic and negative symptoms, while there were insufficient studies to assess the effect of oral THC. Greater induction of psychotic symptoms by THC was associated with lower rates of tobacco use, and greater induction of negative symptoms was associated with a higher age.
The authors also reviewed four studies that examined the effects of CBD on the development of the same psychiatric symptoms, compared to placebo, and no significant differences were found. In studies that focused on whether CBD counters THC-induced symptoms, one study identified reduced symptoms, using a modest sample, but three larger studies failed to replicate this finding.
The authors highlight several limitations to their study. Their finding that psychotic symptoms were not moderated by dose or by prior cannabis use contrasts with results from several studies and may reflect limited power in the analysis.
They suggest that further work is needed to clarify the effects, particularly at the level of individual symptoms. The authors identified potential publication bias, where significant findings are more likely to be published than lower effect sizes.
However, they found that the better the quality of the study, the greater the effect size, suggesting that their results – which also included lower quality studies – may in fact underestimate the size of the effect of THC on inducing symptoms.
This study was funded by the Medical Research Council. It was conducted by researchers from Kings College London, South London and the Maudsley NHS Foundation Trust, Imperial College London, Leiden University Medical Hospital, Yale University School of Medicine, Connecticut Mental Health Center and VA Connecticut Healthcare System.
I’m risking my career to end my daily agony
High flying lawyer Andy struggled for years to hide his daily battle with chronic pain from his clients. Then he broke the law, self-medicating with street cannabis and everything changed, as he explains here.
Pain is part of my everyday life. I say pain, as that’s what my condition is, apparently, ‘chronic pain’. But in reality, it’s agony.
Every minute of every day is spent wishing I could do even the most basic of tasks – getting in and out of a chair, walking up the stairs, even going to the toilet – without it making every sinew in my body object to my attempts at movement.
You probably think from reading this, ‘well that’s what happens to old people’. That may be so, and had I been 50 years older than I am, then I would probably accept that this is my lot.
But I am 32. Supposedly in the prime of my life, but even getting out of bed in the morning is the first massive challenge of the day. And the downward spiral begins there. Brushing my teeth, getting dressed, getting in the car – to be truthful, sometimes by the time I get to work, I’m pretty weary already.
My career in professional services is very busy and usually pretty stressful. It involves seeing clients during a packed day of meetings, advising them on what can often be life-changing matters and poring over the finer details of paperwork often until most people have gone to bed.
As a young professional, this is what I’ve always wanted. But against a backdrop of non-stop pain, it feels like I’m fighting a battle all day every day, just to do my job.
I’ve had this pain since my mid-20s. At first it was just a bit of aching here and there, which for someone with a very desk-based job isn’t uncommon, I suppose.
I tried doing more exercise, but that made things much worse. After a few days had passed and the aching hadn’t worn off, I started to think something wasn’t right. Someone young, in good health, shouldn’t be in this much pain having done nothing more than their daily routine.
A couple of weeks later, I visited my doctor. Seven years or so later, I’ve come to know my doctor rather well.
I tried painkillers, relaxation techniques, hypnotherapy, you name it. Nothing seemed to work. Backwards and forwards I went to the doctor over the years, hoping one of the varieties of medication would make some difference.
It was while researching pain relief during an online search that I stumbled across cannabis. I discovered that since November 2018, it had been legal for medicinal purposes, which initially made me think there was some light at the end of the tunnel, although I did question why my doctor had never volunteered this information. I’d certainly been a few times since it was legalised.
I made an appointment in light of my new discovery of medicinal cannabis and discussed my findings with my doctor. I’ll never forget her reaction.
Once the stunned look had subsided, she said ‘I don’t think we need to go down that route’ and turned away as she wrote out a prescription for yet more pills (I’d had so many bloody pills over the years, I imagine I’m immune to them by now).
Thoroughly disillusioned by my experience, and actually quite troubled as to why I had been refused something that is a legal medicine, I decided to take the law into my own hands. I am being denied something perfectly legal, so I’m going to find my own means of getting it.
Perhaps this was not the best course of action, and I appreciated this from the outset. When you’ve lived for so long in so much pain and you come so close to finding something that could help, however, you don’t let ‘no’ get in your way.
‘Black market’ cannabis is of course illegal but in my mind I was within my moral rights as I was being denied it in a more acceptable way.
Being given cannabis in a suspicious-looking little bag by a local teenager who you’ve come across smoking weed outside of the local off licence isn’t exactly what I’d imagined ever doing, but for me, it’s a case of needs must.
The first time I smoked some, I felt really disappointed. The effect was not instant, and I lay there, illegal cigarette in hand, thinking the police were about to show up at my door. I’d lose my career, my reputation, everything I’d worked for, all for nothing. I went to sleep that night pretty gutted.
The next morning, however, I noticed a change. I got out of bed and walked to the bathroom and I could move. I got dressed without feeling like a 95-year-old struggling on without their carer.
This was amazing. Unbelievable, in fact. I wasn’t quite sure whether to relate the cannabis from the previous night with how I felt that morning, but that was the only change to my routine. Nothing else could explain it.
The pain did come back throughout the day, but I smoked some more that night and the effect the next morning was the same. To me, this seemed like a miracle. An illegal one, perhaps, but nevertheless, this was what I had waited years for.
Now, smoking cannabis is a regular thing for me. I continue to get it from my unlikely friend from outside the off licence, and while I’m conscious and aware of the risks of using such cannabis, as long as it works, I’m not going to question it further.
For me, it’s a shame that I have been forced to have this as my dirty little secret. I have kept my chronic pain secret from colleagues and clients for years, even though I realise there’s no shame in it, but this one about my drug use is something they would really take exception to.
I’m good at what I do and I do a great job for my clients, and I don’t want anything to taint that. Being prescribed cannabis would be the way forward for me, as then there’s nothing grubby about it, but until opinions change that isn’t going to happen.
Even my own doctor, who has come to know me and my situation, rejected the very suggestion of me trying cannabis.
How can that be right? Smoking cannabis in my flat, hoping the neighbours don’t smell it or suspect, is of course a concern, but thankfully they’re all busy professionals like myself, so I’m sure they’ve got more pressing things to worry about.
Cannabis has, in all honesty, changed my life. It’s changed my outlook on life too. To be able to get up in the morning and think ‘I might be able to get through a decent chunk of the day without excruciating pain’ is a motivation in itself.
The best suits have come back out of the wardrobe. The appalling chat-up lines have resurfaced for when I’m out on the town. I am the person I want to be, rather than the one who lives only for the office and the home office, struggling to get between both.
I look forward to the day when being prescribed cannabis becomes a genuine option for people with chronic conditions like mine.
Until then, I only hope I manage to continue to buy and use it under the radar, as the consequences would be pretty dire, which I think is deeply unfair.
Andy is 32-year-old lawyer working in England. His name has been changed to protect his identity.
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