Stewart's Story: Cannabis is the only thing that helps with my terminal illness
Thanks for agreeing to share your story Stewart, tell me a bit about yourself and how your journey with medicinal cannabis started.
I have a couple of quite serious conditions. I’m a former alcoholic, I have drink-related illnesses that mean I am allergic to all pharmaceutical medicines. I have terminal liver cirrhosis that was diagnosed in 2014 and I was given a year to live. I also suffer from chronic back pain from an accident last year.
Sorry to hear that, but glad to see you are still with us. What happened to your back?
It was November of last year when I hurt my back after a fall in the garage. I thought it would get better but as a few days went by and the pain continued to get worse, I went to my local GP to get something for the pain. I had just moved here from London so was seeing this GP for the first time. I was prescribed ibuprofen and despite my medical record stating that I am allergic to it, I was assured I would be OK to take them. I remember it was the night Trump was announced president - I'll never forget it, I almost died. I did not take well to the ibuprofen at all, and was rushed into hospital after losing a lot of blood. I was in hospital for 11 days over which time I had to receive multiple blood transfusions and have some work done on my liver.
That must have been terrifying… What happened next?
When I was discharged from hospital following the spinal injury, I was discharged with the advice that it was an impact injury that would pass. Over the next few weeks I developed what's called a Baker's Cyst - my leg swelled up and I couldn't move it. I also lost control of my bladder at this stage and could walk at all. I was a joke. In January and February this year I was reduced to a joke. Eventually we got to the bottom of the spinal injury; it turns out wasn't an impact injury, I'd actually hit nerve points in my back which resulted in a neurological spinal condition. It's never going to get any better. In September I should have been in a wheelchair.
So at this point you weren't aware of the potential medicinal properties of cannabis?
I knew nothing about that. I'd smoked cannabis before in my younger years. I've just turned 39 last Saturday and have dabbled with the plant moderately over the last 20 years or so. That was purely for leisure purposes – I didn’t know about any of its medicinal potential, I just thought it got you high, and it was fun. And it still is fun!
[laughs] It is! So was any source of recourse offered to help with the pain?
Nothing, they told me it was too late for anything given my conditions.
Not able to take any sort of medication, you must have been in a great deal of pain?
Chronic pain. Like a drill put in the base of my spine which is always there. It's there now…
What medications had you tried previously?
They tried everything. Tramadol, Acetaminophen, Paracetamol, Aspirin, Gabapentin. They don't do anything good for me, but have awful side effects – psychological effects, I lost control of my bladder, my mental health declined. I started being very mean and losing my tempter often. The Gabapentin was the worst. I lasted one day on that one…I took it here at my Mum's. I sat upstairs and administered the dosage – the feeling is hard to explain but it felt like I was one of those Russian dolls in a shell, in another shell, rattling around in someone in there. I couldn't handle it. I came down here and sat with my mum and we talked for a few hours. We came to the difficult decision not to continue with tablets. The mental toll was just too much..
That must have been a difficult decision to make. At what point did you realise Cannabis may help?
Not for another month after coming off all of meds. I'd always wanted to go to 420 in Hyde Park and a friend of mine and I decided we would go this year back in April. So, we made the journey up to London for the day. I was still clueless about its medicinal properties at this point.
So you stumbled on this because it's been a part of your culture in the past, having smoked cannabis for leisure in the past. If you hadn’t experienced cannabis in the past, do you think you would have found out about it’s medicinal properties some other way?
I don't think I’d be as knowledgeable as I am now. We went to Hyde Park that day and were walking around, just me and my good friend, who has had serious back problems since he was six years old. He was and still is my lifeline as he can relate to the things I've been through. There were police everywhere and ‘Cannabis is illegal’ on signs everywhere. We were obviously respecting the laws and didn't have anything on us but it was still a daunting experience when we first arrived.
Whilst walking around, we saw the United Patience Alliance tent, and met a few different other groups. We were chatting away to some people when a man comes around with buckets full of CBD caps. CBD? I’d never heard of it! We took a few of these CBD capsules as they told us how CBD is a non-psychoactive compound found within cannabis and that it had many medicinal benefits. It’s also legal in the UK. Neither of us had heard of it before…we just thought weed is weed up until that point. We learned that there are strains that can help you eat, sleep, take your pain away and endless other things.
We met many good people that day, and it was the start of my journey. As the day came to an end we started walking towards the station - and bear in mind at this point I was on crutches and it had been a struggle to make the journey to London. We walked out of Hyde Park and got to the station without even needing to stop for a break! It felt amazing. I came back and saw my mum and we had a coffee and couldn't believe how much better we both felt. There was a little card that I found in with the CBD pills – with information about the Tottenham Compassion Club. They are some truly great guys – passionate about helping other – and I can’t thank them enough for the help they have given me. They are strictly donation based, there’s no membership fee, it's just all about the patient.
How has your life changed since you started medicating with Cannabis Oil
I no longer need to take any pharmaceutical or prescribed medicine. This oil is all I need. I've regained some of the weight I lost whilst taking all the medicines I was prescribed before. I don't need my crutches so much either. I'm not fast, but I can get by this way. It's just crazy that these pharmacy-produced medicines nearly killed me, and yet a man can get arrested for growing a plant that helps so much.
Since you've been self-medicating have you had any further interactions with your healthcare provider?
Oh yes. Where we are up to right now - I was there in August. It took a while but I got referred to a pain specialist at West Suffolk hospital and I saw a great Doctor there.
Did you tell them you'd been medicating with Cannabis?
Yes - they asked me to bring in all my meds with me that day. I went with all the prescribed medication that I'd previously tried which has had no positive effect. I also went with my canna medication, took it out and put it onto the table. The look on the Doctor's face was priceless!
After a lengthy discussion, the Doctor agreed that it would be best to carry on with my self-medication, and that there was nothing else they could give me in its place that would have the same benefit. She said she was going to consider what would be possible for the future. I've written to my MP too, but never got a response.
What's your MP's name? Let's name and shame!
Ok so back to your last consultation with the Doctor…
There was mention of Savetex, which is the GW Pharmaceutical’s synthetic version of Cannabis. I'm a bit skeptical of this as it's manufactured and chemically engineered; unlike cannabis which is completely natural. Why is there a need to re-engineer something that already works extremely well and is easily available to us?
Oh yes! I got a letter from the Doctor about 6 weeks later saying she'd applied for me to get funding to go onto Satevex trials. If I get funding for the trial, I'd have to stop self-medicating with cannabis. If I get accepted I will do it - my illnesses are terminal and as such I would be happy to be a guinea pig for these trials in the hope that it could help others also needing the treatment. If it's wrong and makes someone poorly - better do it on me than someone healthier!
You're currently living with your Mother who helps to take care of you. What was her reaction when she first found out you were medicating with cannabis?
It was back to that night on 420 when we got back from Hyde Park. I would say her reaction was one of surprise - she saw that we looked like two different people, able to walk far easier and without the usual crippling pain. That's when we realised this thing can help me a lot.
My mum has always done the best for me. She was raised in an environment where cannabis was perceived to be a scary, harmful drug, and of course the fact that it remains illegal in this country reinforces that perception. So, there was of course some concern given the legality, given that she has never broken the law in her life! However, she has seen my transition; witnessed how it helps manage my pain and health on a mental and physical level. As soon as she saw the impact that cannabis has on my quality of life, she was fully supportive of my decision.
Unfortunately, most people out on the street still see it as a harmful, dangerous substance that only ‘stoners’ associate with.
You’re right, but we are trying to change that perception! By sharing your story and others like it, I hope we can start to change that mind-set…
That's right. I tried every legal drug there was to treat my condition. Time after time, nothing worked, until they ran out of options. What was I supposed to do?
I understand that there are many ways of ingesting cannabis, have you found something that works for you?
Yes, but you do have to try and see what works for you as it varies for everyone. The more you get into it - the more you find out the power of this plant. There are so many different strains that are each good for treating different things.
For me, my instant fix is cannabis oil containing both THC and CBD. CBD is great but the THC really helps with the pain. Just two drops under the tongue and within a minute it’s in my system, relieving my pain and anxiety. It’s the Rick Simpson recipe that works amazingly well for me. I simply couldn’t be without it now.
I think there is perhaps a perception that this would make me a stoner or a druggy, but what’s the difference from the large pillbox I used to have for all the prescribed medicines? The only difference to me is that the cannabis works, and with minimal side effects. The only side effect I have noticed is if I take a higher dose, it can lead to drowsiness. Sometimes this is a good thing though, too.
Did the prescribed drugs effect you mentally?
Yes, they made me worse. I just become a zombie. It’s scary to think there are many people out there today being fed that poison who don’t know about cannabis.
Regarding the legality of cannabis in the UK, what would you like to see happen in the future?
Cannabis needs to be fully researched so we can fully understand all its medicinal properties. It’s been used for thousands of years by people all over the world and that’s no fluke. We are currently seeing good progress across the world in terms of legality; countries in Europe, most of the states in USA have now legalised it to some extent. Our Irish friends are fighting for it right now. I don’t understand why we waste so much money and resource – police time, the courts of law, investigations, prisons – on this plant. Once we have done the research we need to regulate the market. It wouldn’t be right to allow kids out on the street smoking cannabis for example. With that being said, there’s most certainly a place for cannabis treating certain conditions in children – but that’s why we need the appropriate research and regulations in place first, to ensure safe and effective treatment. There are people out there right now risking jail time for using cannabis oil to treat their kids with cannabis.
We should look to places such as Israel. A lot of great research is coming out of Israel at the moment; I’m in touch with some of these organisations to hopefully participate in some of their studies in the future.
Agreed, there’s a lot of innovation happening in Israel currently – I was recently at the CannaTech conference in London where I learned about a recent research study concluded by Tikun Olam on cancer patients. The research is due to be released shortly and I gather that the results were very positive.
I do believe it has the potential to cure certain types of cancer but more research needs to be done in this area. One thing that is 100% certain at this point is that it improves the quality of life of those with a wide range of illnesses. I think we are part of a movement here and hope we see things progress in the UK soon. I believe this will revolutionise the healthcare industry. The government stands to generate millions per year through tax revenue if we were to legalise. They could pay for the healthcare costs generated by those poison tobacco sticks they sell for starters.
The illegal cannabis market here is very active. It’s easier than ever to acquire it through Social Media. The war on drugs is a total failure! They are wasting time and resources which could be better allocated towards more serious crimes, such as fighting terrorism.
I strongly believe we need to fight for future generations to access this medicine. I feel like I shouldn’t be here with the things I have been through, so this is my mission – to do whatever I can to help fight this injustice. Recently cannabis has been covered on mainstream media which is great to see – Loose Woman, BBC Whales, BBC Three, ITV. We try and watch it all.
If any rational person were to put themselves in your shoes, and go through what you’ve been through, I struggle to see how they could not come to the opinion that this plant has had an immensely positive impact on your life..
I just want to do my bit now by helping others. If it means breaking the law…if it is the only way to help patients in England right now, it needs to be done. Would they rather break the law and live, or be dead? A few of us are going to have to take a knock or two to get us there, and if it comes to it then so be it.
What you’ve shown me here in terms of your passion to help people is very admirable. Thank you for sharing your story and all the best Stewart!
Transcript edited for length & clarity.