SQUEEZING the pipette of cannabis oil under her tongue, Ceri Jones closed her eyes and took a deep breath.
â€śPlease save my life,â€ť she thought. In May this year, Ceri had bought a marijuana tincture from an online supplier in Germany in a bid to out-smart advanced, aggressive pancreatic cancer.
â€śUntil medicinal cannabis is freely and legally available, I know Iâ€™m breaking the law,â€ť admits Ceri, 38, from Surrey. â€śBut when I was told I was out of treatment options, I decided Iâ€™d try anything so my children donâ€™t grow up without me.â€ť
Last month, medicinal marijuana hit the headlines again with the story of 12-year-old Billy Caldwell from County Tyrone, who suffers from drug-resistant epilepsy and experiences up to 100 seizures a day. When his mother Charlotte, 50, returned to the UK after flying to Canada to legally obtain enough medicine to last Billy six months, customs officials at Heathrow confiscated their supply. Her sonâ€™s seizures quickly resumed and he was rushed to hospital.
With the nation in uproar, Home Secretary Sajid Javid announced on June 19 that the Government would review the use of medical marijuana. Within two weeks, the Home Office agreed a special exemption licence for Billy. Lib Dem MP Norman Lamb described the decision as a â€śbig breakthroughâ€ť and a step towards a â€śrational debate about full legalisationâ€ť.
Legalising marijuana for medicinal use is something the organisation CLEAR Cannabis Law Reform has been fighting for since 1999. Three years ago, it published a paper reviewing the evidence for cannabis as medicine.
â€śWe found that cannabis can offer significant therapeutic benefits for a range of conditions such as chronic pain and depression,â€ť says CLEAR president Peter Reynolds, who explains that there are two types of active compounds found in the plant â€“ tetrahydrocannabinol (THC) and cannabidiol (CBD).
â€śTHC alters your state of mind as it has a psychoactive effect. CBD doesnâ€™t,â€ť he says. â€śBut while buying and consuming CBD in the form of a concentrated oil is legal in the UK, THC â€“ whether smoked or in oil form â€“ isnâ€™t. That is the ludicrous state of affairs weâ€™ve been campaigning to change for 19 years.â€ť
But attitudes are changing. Rethink Breast Cancer is campaigning for marijuanaâ€™s health benefits, and last year the MS Society became the first major UK charity to call for the legalisation of cannabis after a survey found sufferers said it helped pain and muscle spasms.
â€śItâ€™s wrong that people with MS are being driven to break the law by growing or buying cannabis to relieve symptoms that can make daily life impossible,â€ť explains Genevieve Edwards, director of external affairs at the MS Society. â€śWe canâ€™t ignore the evidence â€“ medical cannabis could help around 10,000 people with MS to relieve pain, muscle spasms and stiffness.â€ť
Ironically, Britain is the worldâ€™s largest producer of legal cannabis for medicinal and scientific use, exporting 95 tonnes in 2016.
Until Ceriâ€™s second pregnancy, she was in good health. Five years after meeting Gary, 36, an electrician, on a blind date, the pair married in October 2012. A head of department at a care home, Ceri longed to be a mum, and after the arrival of son Austin, now five, she was thrilled to discover she was pregnant again in May 2014.
But at 27 weeks, Ceriâ€™s skin started to itch, her urine turned cola-coloured and the whites of her eyes went yellow. Five weeks later, she went into early labour with Leo, who thankfully, was healthy. But then three weeks after she gave birth, doctors told her they had found a 3cm tumour on her pancreas.
â€śI was completely blindsided,â€ť she admits. â€śIt was such a shock, but I remember being so driven to survive for my sons. I couldnâ€™t bear the thought that if I died they wouldnâ€™t even remember me.â€ť
Given just a 5% chance of survival, Ceri endured seven brutal months of chemotherapy, radiotherapy and surgery. â€śIn March 2016, there was no evidence of the disease left,â€ť she says. â€śI was so happy I signed up for a marathon, made sure I ate healthily and exercised often. We moved to a house with a big garden for the kids, and I thought I had my life back.â€ť
But seven months later, a scan found a tumour in Ceriâ€™s liver. â€śIt was caught early, so it was easily treatable with a procedure called radiofrequency ablation, which kills cancer cells. Again, I thought Iâ€™d won,â€ť she admits.
However, in May this year another scan revealed Ceri had two more tumours on her liver â€“ and the disease had also spread to her lymph nodes. â€śWhich now means this is it,â€ť she says starkly. â€śWhen I was told it was now inoperable, I tried to be brave but I just ended up sobbing in Garyâ€™s arms. I felt so defeated. I didnâ€™t ask how long I had left, as I didnâ€™t want to know. At home, the boys couldnâ€™t understand why I was crying all the time and I didnâ€™t want to lie, so a few days after my diagnosis we were cuddled up in bed and I told them I might die. It felt so awful. Austin was inconsolable.â€ť
Ceri first researched cannabis oil after she was originally diagnosed in 2015. â€śI joined cancer support groups on Facebook, where patients spoke about tumours shrinking or remaining stable while on cannabis oils,â€ť she says. â€śSome had gone into remission, and others simply found it to be great pain relief. But at ÂŁ170 for 50ml, it was expensive, and ultimately illegal, so I didnâ€™t take it any further.â€ť
However, having run out of treatment options â€“ other than palliative chemotherapy â€“ two months ago, Ceri decided to break the law. After more research, she bought a 50ml bottle of THC paste (which is more potent than oil), a 50ml bottle of CBD oil and a 50ml bottle of THC oil, all at ÂŁ170 each from an online company in Germany.
â€śI put the paste into capsules with coconut oil and CBD oil,â€ť she explains. â€śI also take drops of CBD and THC oil under my tongue. CBD is thought to stop the progression of cancer and THC kills cancer cells, so taking the two together will hopefully offer maximum benefit, while the small doses throughout the day keeps them in my system.â€ť
Ceri has to make sure she doesnâ€™t take the oils close to chemo days because cannabis is so rich in antioxidants it can counteract the treatment, but she says she has already noticed a change.
â€śIâ€™ve never slept better and I feel like my energy levels are soaring,â€ť she says. â€śThankfully, friends and family support me â€“ not one person has criticised me for my decision. My oncologist said around 30% of his patients use cannabis oils. But itâ€™s expensive, so Iâ€™ve had to set up a Gofundme page to raise money to buy more. I hate asking for donations, but I want to be alive for my children.
â€śI just want extra time,â€ť she adds. â€śI want time to hug my husband and take my kids to Legoland. I want to cram in as many fun days as possible. I donâ€™t want to break the law, but I donâ€™t want to die either.â€ť
Marijuana is legal in Canada, and more than 40 US states have allowed medical and recreational cannabis use. In Oregon, cannabis has generated nearly ÂŁ64million in tax revenue since it was legalised, while across the rest of the country, business is thriving, with entrepreneurs launching everything from cannabis retreats to lip balm. But as the drug remains illegal in the UK, users are still being stigmatised.
Grace, 33, from Milton Keynes, is too terrified of shame at the school gates to be identified. â€śI could never admit to using cannabis, even though itâ€™s my medicine, because I worry what the mums at my daughterâ€™s school would think,â€ť she admits. â€śThey regale each other with stories of getting drunk and dancing on tables at weekends, but if I told them I smoked a joint I know theyâ€™d judge me.â€ť
Grace suffers from Ehlers-Danlos syndrome, an incurable genetic disorder sheâ€™s had since birth. It causes joint dislocation, spinal instability, muscle pain, fatigue and nausea. The medication she was prescribed â€“ an injectable immune system suppressant so toxic it had to be delivered by special courier and stamped with warning stickers â€“ only made her feel weaker. When she was 25 and her symptoms worsened, a friend recommended cannabis.
â€śIâ€™d smoked a few spliffs at parties as a teenager, but this time I was trying it for my health problems and it worked brilliantly,â€ť she admits. â€śBy June 2014, Iâ€™d stopped all prescribed medication. Now I use cannabis daily for my pain and to loosen my joints.â€ť
However, as a single parent to Dawn, six, Grace worries about being perceived unfairly. â€śMy mum was so shocked because she thought it was dangerous,â€ť she remembers.
â€śSo I showed her photos of my stiff, swollen, purple hands first thing in the morning, then how they looked 10 minutes after my first joint, all back to normal. After that, Mum gave me her blessing, but itâ€™s baffling how anyone could be worried about me using weed yet not bat an eyelid when I injected a prescribed medication so toxic that it would have burned a hole in the carpet.â€ť
Grace now buys ÂŁ60 worth of cannabis a week, smoking five joints a day to help manage her pain, inflammation, anxiety, appetite and nausea.
â€śI long for the moment I can walk into a pharmacy and collect a prescription, because on the streets you get what youâ€™re given and thereâ€™s no way to regulate it,â€ť she explains. â€śI never smoke in front of Dawn, even though itâ€™s only thanks to cannabis that I can be the mum she deserves.â€ť
In April, Graceâ€™s ex threatened to take their daughter away because of her cannabis use. â€śA friend who works for social services assured me Iâ€™d never lose Dawn because of it, but I called the police to find out where I stood on the issue,â€ť she says. â€śThe police came round and I told them everything. Afterwards, the officer admitted that so many people use cannabis medicinally these days, theyâ€™d be wasting their time trying to arrest everyone.â€ť
But while users may not find themselves behind bars, Fabulousâ€™ Dr Hilary Jones warns the drug can carry other risks.
â€śCannabis can treat certain symptoms and conditions, but side effects may include hallucinations, cognitive impairment, addiction and psychosis. And people tempted to buy it online have no control of exactly what, or what dose, the product contains. Extracts of natural products are notoriously inconsistent in their strength and effect.
â€śHowever, it does seem the UK needs more progressive legislation so that all patients who might benefit can access through medically regulated channels the most effective medicines based not on their legal status but on the scientific evidence for them.â€ť
Peter Reynolds from CLEAR believes that cannabis will be fully legalised in the next five years. But until then, Ceri will continue to break the law in a bid to stay alive.
â€śI love my boys more than life itself,â€ť she says. â€śI didnâ€™t bring them into this world to just leave them. I want to see all their firsts and who they marry and what careers they decide on. I want to see if Austin learns to like fruit and veg, or if Leo will play sport. My husband doesnâ€™t deserve the devastation my dying will cause our family, and if cannabis can stop that, then itâ€™s certainly worth the risk.â€ť
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