In July 2013, I found out I had Ovarian Cancer. I was extremely lucky in the sense that it was Stage 1A which means it hadn't spread at all, and it was completely removed in a biopsy during emergency surgery. I've attended monitoring by way of blood tests and ultrasounds ever since.
In October 2014, (by which time, sadly my father had also passed away unexpectedly) I started to show signs of a new illness while I was on holiday in the US. I developed dreadful sound sensitivity and severe mental and physical fatigue. I went from walking everywhere, taking dance lessons and doing a short aerobics session plus yoga twice a day to apparently not having the muscle strength to walk further than a couple of blocks without resting and anything more rigorous than that was completely out of the question. Within a few months, I was able to add widespread pain and muscle spasms and severe tremors in my hands and legs to the degree that I could barely stand, I'd lose balance or become dizzy easily. I'd have seizure-like events, which although I'm not epileptic, look basically like a grand mal, but I remain conscious, and I'd have periods of paralysis, where I physically couldn't move a part or all of my body however hard I tried. I went to see my doctor early on who took a while to grasp just how bad things were until they became more visible, like when I was walking with difficulty with a stick, and my balance was such that I'd lurch to one side so it apparently looked like I was drunk. She was very understanding though, and in my opinion pretty thorough in referring me for tests and scans once she realised how bad it was. It all took longer than I'd have liked, and my theory (multiple insect bites) as to why I'd developed these problems was left too late to be able to confirm either way, but the NHS has a lot of patients and there's no point being cross about it now. My workplace were incredibly understanding too as I realised I couldn't manage working full time any more, and couldn't go out anywhere on foot or climb stairs, but again, it was impossible to grasp the extent of the problem until they were able to see it more for themselves. Fatigue in particular is so subjective and everyone gets tired but what I meant by tired was that I could not climb stairs or walk or do anything physical. Because of the mental fatigue, my concentration became and still is so appalling that I usually couldn't concentrate on anything for longer than a few minutes and my short term memory dissipated to nothing. Even listening to radio or music really tired me out. About 9 months from noticing the first symptoms, things had deteriorated so badly that I had to use a wheelchair full time and was bed bound the vast majority of the time. In my early 40s, had to retire on medical grounds.
Fast forward to 2018. By this point I'd been diagnosed with Functional Neurological Disorder, which is one of those things that is apparently very common but nobody has ever heard of it. My condition was no better, although I had motorised wheelchairs and a stairlift and crucially, home help that meant I was eating so much more healthily again and not at risk of self neglect. I still experienced the same symptoms, but was at least to some degree used to them, and had learned that I need to rest most of the time of they're to be manageable. Sure enough, Chronic Fatigue Syndrome is one of my many symptoms. Then the worst thing that I could possibly imagine happened. I found out I had another tumour. There was no way of knowing whether it was malignant or not unless I had a biopsy, though my blood results gave room for optimism. This meant that I was recommended to have more major surgery, something that had been a constant issue since the previous instance, but I remain steadfastly against it. Each to their own of course, but for me, a hysterectomy which was the operation in question did not feel right at all. My body is me and mine, and for all the medical opinion in the world, losing a healthy organ as a preventative measure simply doesn't feel right at all. I'm not reckless or at least I don't think so, and I'm incredibly grateful for the scans and checkups that I still get to have, but I would have to feel that the risks are much higher if I were to reconsider. I don't feel my decision, or my right to make it is reflected by many of my oncology department, but it's my decision nonetheless.
The idea of me and my family having to go through the experience of Cancer again on top everything else sent me instantly into a deep depression (something I've suffered on and off for most of my adult life) and for a few months, a constant state of severe anxiety (which was new to me, and one of the most horrible mind states I've ever experienced). But I quickly realised that if my opinion about the operation wasn't going to change, I had to do something to help myself and to bring it off the table again.
Enter cannabis oil. I'm big on alternative therapies anyway. I take turmeric supplements every day and have done for a couple of years, and I use essential oils on a regular basis, but on looking into different remedies for cancer specifically, some sounded to me like snake oil, had barely any research or limited studies to support the claims. Many were way out of my spending power. So I decided to try cannabis. Initially I bought weed to smoke but then as I researched further, I learnt about how different methods of taking cannabis will have different effects on the body, and how some were considered more medically effective than others. So I started to make edibles products for myself like mini muffins,having looked up what guidelines are used in US States where it's legal now, like what's considered a single serving of THC for example. I had to enlist the help of a trusted friend too of course. No sensible person would let me near a cooker unsupervised any more. Obviously I couldn't see results and only time would tell, but this definitely helped my mood. I wasn't stoned, I was careful not to take too much and my functioning remained the same, arguably slightly better because of the lifted mood. Then coincidentally, another good friend, one who didn't know I was taking the weed, recommended a Medical Cannabis Group I might want to contact. So I did, and I was able to contact a person who could supply me with cannabis oil that they sold on to help people with medical conditions. This was extremely expensive too, and I knew I wouldn't be able to afford it for long, but it was nothing like the prices of things like Boswellia (Frankincense) Extract. I tried CBD only, I tried 3-5% THC oil and the two in conjunction, which was way too difficult for someone who can't remember to do things. I tried very low THC oil, made from the well known medical strain (though arguably, they all are), Charlotte’s Angel. Why did I chop and change so much? Well I couldn't see a difference in my tumour, not yet, but one thing I was starting to see a very visible, undeniable improvement in my neurological symptoms. Of course, prior to all this I had been well aware of medication like Sativex. For those who don't know this is a Cannabis based medication given for relief of multiple sclerosis symptoms. I had also read that it was barely actually being prescribed to anyone despite its effectiveness, because it was deemed too expensive. But I had never considered cannabis to try to improve my own symptoms. I'm a pretty strong and determined person, but in truth and in hindsight, I think I'd probably been depressed since soon after I developed my neurological disorder and therefore not had the will, but I shall never know for sure.
Well about four months after I started on the weed, I found out my tumour had shrunk by half, and relief doesn't even cover it. By this point, I'd established that the higher THC suited my neuro symptoms better and whether it was the reason my tumour had shrank or not, it had certainly not had a negative effect. Another 3 or 4 months and I was again told that my tumour had shrunk by half. To be more accurate, I was told by the radiographer that it was gone completely, as she showed me an ultrasound where the only thing showing up was normal follicular activity as the result of an apparent menstrual bleed. The Doctor clearly disagreed and and an hour and a half later, told me it wasn't gone after all. By this point I was stable in my oil of choice, and whereas I'd been worried to admit to medical professionals what I'd been taking, for fear of being judged or pigeon-holed, the results were so glaring to me and my friends and family by now, I couldn't not do. We spent the majority of the consultation discussing the possible benefits of cannabis oil. He was somewhat on the fence about whether it had shrunk my tumour, though to me it seemed extremely coincidental, and I don't really believe in them. For many of my other symptoms, like the reduction in my spasms and tremors and seizure like events, and an improvement in my IBS, he explicitly stated that the cannabis would be responsible and went as far as to encourage me to keep taking it. Alas, when his report went back to my GP, there was nothing documented anywhere that such a conversation ever took place. Like it never happened! I feel I should have chased this up really, but I get so tired. It's so sad, but I've become so used to inaccuracies in medical reports and omissions of things that to me, are incredibly important. To me, it's really irresponsible to not fact check such documents. It doesn't create a realistic representation of a situation if the reporting of it is incorrect or lacking, nor does it suggest much advocacy on behalf of the patient. There are some amazing medical professionals out there and I count myself very fortunate to have some of them fighting my corner. Even the ‘bad apples’ will often have their redeeming features, but these certainly are not qualities I take for granted. I always thought compassion and empathy were essential to working in such a profession, but I now file this notion under ‘desirables’.
One such professional who I always feel is on my side is my neurologist. Obviously for him, he could see as big a change in my presentation as me and my friends and family could. He was very concerned about the risks I'm taking by using something that's illegal and even once I'd found a cheaper supply, expensive, but he remained very encouraging that I should continue to take it. We discussed my switching to One to One oil (CBD:THC) as I felt that this would benefit me even more, as well as him helping me wean off my tablets once I'd decided on an oil dosing and profile, so as to put less strain on my body. And he applied on my behalf for Prescription Medical Cannabis straight away (Sativex was the main item discussed). This application was rejected as it was felt that I only met two out of the three criteria. (The failing criteria was the fact that I don't have Epilepsy as such, just Epilepsy like symptoms that the cannabis is already managing!) Also, Oncology were not prepared to support my application because of insufficient evidence. Thanks for nothing guys!
So that takes us up to now. I have now been on the One to One oil for several months, which costs, but it's manageable at least for me at the moment. I take my oil five times a day with my medication. It reduces my pain pretty early on in the day I think. I still experience pain, but so much less. My tremors and spasms don't reduce to their peak until I've had around three doses. I'm so much safer when standing to transfer to a chair for example, because although my muscles still tire quickly, my shaking legs aren't affecting my confidence or stability. For the past few years, I've not been able to hold a pen for longer than to write my name, as my hand would go into spasm almost instantly. Now on a good day, I can write a letter of several pages and I'm told my writing looks no different to how it ever was, though I was never blessed with neat handwriting. My seizures or seizure-like events went up to several a week between April last year when my stress was particularly high. When I started on the weed, they reduced to one or two a week. Since I've been on oils with THC in them, and I touch wood as I say this, my last one was the third week in October, so coming up to 4 months. I still feel that there's one coming sometimes (I can write often tell, though I'm not sure I could put into words why I feel different), but it never does. My fatigue levels haven't altered at all, but I'll settle for that as at least they've not worsened. My body just clearly needs inordinate hours of rest now. That's just the way it is. And my concentration issues or brain fog as it's commonly known isn't any better, a major factor that reduces my levels of functioning, though I have found ways to use cannabis to help improve this too for short spells. I have learned more about the methods of intake I described earlier. I have researched so many different strains and learned how every single one could be medicine to somebody. The oil is a wonderful way to get extremely large (but safe) doses into my body. The bud is terrific for me if dry vaped or smoked of I need an instant boost to steady my hand, or I need to improve my concentration for a certain task. My plan is to start taking an edible dose first thing in the morning for as long as my dose time is governed by my medications. My hope is that because it's effects are long lasting by this method, it will help cover the shortfall until that sweet spot of three metabolised doses has hit, so that I get even more good hours where my symptoms are so well managed. All my hard work does come at a very high price, despite how it's worth it. I've had to employ far more discipline with regards to resting. I suffer exhaustion like even I hadn't previously experienced if I do too much that taxes my brain and body. It's really hard work being your own doctor, when even before you were too physically fatigued to get out of bed most days, but my goodness it's a journey.
So why have I shared all this? To offer a life situation that some might be able to identify with, to impart knowledge and a perspective and to make a plea. Please, please, please already can our Government just legalise cannabis. It can help so many people in so many ways. The stereotype of the stoner is so naive. We currently live in a state where recommended guidelines for alcohol intake are in amounts that are way above any that published research has found may be good for us, and yet we are given the choice, as alcohol is readily available. Some people will abuse it (as defined by whatever current thinking states is abuse) but the vast majority won't. Coffee houses have replaced the pubs, and much as I love coffee, I don't see a demonisation of those who drink lots of coffee, despite its own negative as well as positive effects. People who are overweight get judged by many, but they are still given choices (though eating healthily can cost more which is a travesty in itself). Smokers have joined the evil klan in society, but despite the fact that tobacco has not been deemed good for you in any way for a long time, the choice remains. And yet cannabis, that is extensively researched as having so many beneficial offerings remains illegal. What on earth is that all about? Most people who use cannabis don't sit around like zombies. Most go about their business and you'd never even know. They hold down jobs or look after their children or try to manage their illnesses, they use it responsibly and function in society as they would without it, or in many cases, even better.
I'm not saying it's for everyone and I'm not saying there is no potential dangers. I used to work with people who suffered from psychosis and I saw first hand just how badly even a small amount of weed could exacerbate their conditions. I advised them then, and didn't believed that they were better off staying away from it completely, and for those unfortunate few, I would say the same now. I know in my own case, it can do incredible things to make my life a little better, and I'm not asking for much I don't think, I just want a quality of life that's as good as it can be, but if I have too much weed, it will do the opposite of its meant to and my tremors and anxiety will worsen greatly. I've learned this through experimenting but as I don't like these effects, and more importantly I consider all my cannabis as medicine now, and have such respect for it. Read the bumf on almost any prescription medicine and you'll find that possible side effects are endless and often include the potential to exacerbate the problem they're trying to treat. I've lost circulation in my limbs through medication side effects and over had horrid hallucinations (through prescription drugs, not illegal ones) amongst others, I've had botox in my neck and limbs to try and quieten the tremors, but long term, if a higher dose had actually worked would have caused my muscles to waste. I've been on opioids plus various other medications for several years now, because although these tablets don't work very well, and I hate taking tablets, they worked better than nothing, yet the cannabis is far more effective than any of these. In what parallel universe could it possibly be better for me to take opioids long term over this natural and powerful treatment? A plant that is this abundant should never be cost prohibitive, although given that people pay for bottled water, even nature’s own gifts can be and are commoditized all the time. And one size does not fit all. Every strain can offer a different attribute, so offering such limited choice in the form of Sativex for example (particularly when restrictions on even that are so tight) is robbing those who might benefit from others from any opportunity to ever find out. Counter-arguments such as ‘cannabis leads to use of harder drugs, have long since been debunked, yet they remain firmly in the psyche of so many. People who benefit from the effects have no reason to move onto harder drugs, because they would serve a completely different purpose and if it ain't broke don't fix it. Those attracted to harder drugs would no doubt access them anyway, but if cannabis was legal, there would be no cause to go to traditional ‘dealers’ that may be selling an array of goodness knows what. Countries like Portugal don't have drug problems and they're legal there. Most people don't want to be breaking the law in order to improve their own life or health, or those of their children.
Thank you so much for taking the time to read this and I do hope it leaves some food for thought. Anyone reading this has the power to try and make a difference. If it's a topic you're passionate, speak to your doctors, speak to your MP, join the multitude of information sharing or campaign or support groups. A change in the law could make such a huge difference to the wellbeing of so many people, adults and children alike.