This is a guest post from a friend who has been battling a significant brain tumour and has been taking cannabis oil in addition to his palliative treatments:
To be grandiose for just a second, I have some reports back from the frontline in the centuries-old ‘battle’ against cancer. Thought you might find them enlightening, uplifting, surprising, inspiring or useful. I really hope that’s the case.
So, what qualifies me to talk about this? Well, I’m 42 years old as I type this, but back when I was a devil-may-care renaissance man of 37, in 2017, I got flu. I walked down to the local pharmacy to get some over-the-counter cold remedy, about a half-mile from my house. As I was walking home, up the hill in the streaky evening sunshine, I remembered I needed some other items from the store – most notably, wine. Doubling back, I returned to the parking lot, and instead of picking up wine for later, I decided to spectacularly spin, at dizzying speed, end-over-end-over-end, head-first, until I blacked out.
It’s fair to say I didn’t get the wine.
When I woke up, 12 minutes later, a stranger’s jacket was under my head, which felt like it had been run over. My ears were ringing. I couldn’t move a muscle, apart from my eyes. Using these, I noticed that I’d come to rest with a cigarette burning literally inches from my face. ‘Greerereffuggin ciggaressem eyeface,’ I said. Feeling slowly returned to some parts of me, west of my nose. A man I’d never seen before, who I knew to be the owner of the coat I now realised was under my head, said: ‘It’s alright. The ambulance is on the way. You’ve had a fit, dude.’
‘Arefugginjokin? Get the cigarette away from my face, please.’ My speech centres, returning from their little vacation, were back. And as they were attached to my mind, they were pissed off.
The EMTs arrived. They checked me over, and as a massive headache broke like a black wave from my right temple across to the bottom of my left ear, they reassured me that I’d been working too hard (true), that this sort of thing just sort-of happens sometimes (also true, but less so in my case) and that I’d be alright in a few days.
However, my ride home concluded with another, even bigger fit as I got off the ambulance. They decided, since I couldn’t tell them what had happened and didn’t know where I was, that I should be raced into the nearest hospital. Three more fits – one in the ambulance and two in ER – followed. Then nine sleepless hours on lots of opiates to control fits. Followed by a really trippy ride in the MRI tube. Finally, at six the following morning, a nice man in a white coat with a Very Serious Expression on his face approached my bed. My head still pounding, he sat far too close to me on the bed for this to be about hallitosis, and said: ‘I’m afraid I have some bad news – you have a significant brain tumour in your right parietal lobe. It may be operable, and I’m here to tell you that we are going to do everything we can to fight this thing with you.’ He looked about ten years younger than me, tired, and sad.
‘You’ve got to be totally fucking kidding me, man,’ I said, not unreasonably.
‘No, I’m afraid not,’ said Holding Hands Bad News Man.
A little aside: cancer has, for some reason, treated itself to a parking space outside my house since 1999. My sister Lucy died of a brain tumour in – you guessed it, the right parietal lobe – in 2000, aged 19, when I was 21. My mother, Sue, passed away from stomach cancer in 2011, aged 64, when I was 31. It’s fair to say me and the Big C have beef at this point.
‘Just hold my hand, please.’ He did so, and I had a little cry.
He left, and I sat in that bed, weeping like a lost child, literally all day. I must have told my wife Tamsin, at that stage five months pregnant with our only child, and other family members, but I can’t remember. I think my brain, realising the scope of its most-recent cataclysmic fuck-up, was trying to atone by suppressing the memory. Well played, brain.
Various increasingly gloomy scans followed, and they generated appointments, checks, reassessments and some serious number-crunching. I was finally diagnosed with a non-methylated type three/four glioblastoma multiforme, measuring 7.2 x 5.1cms, sitting about 60mm below the surface of the brain. It looks disarmingly like a strawberry on the scans, with a wider top than its base. I was lucky, said one of the reassuringly serious medical people – another three millimetres to the left and we’d be in you-can’t-regulate-your-own-breathing-or-blink territory. Three millimetres hasn’t meant that much since my days as an undergrad student, but that’s another story.
As things stood, the tumour had elbowed its way into the bit of my mind that governs impulse control, anger management, spatial awareness, and something called prioperception (my idea of how much space my own body takes up in the world, as well as my ability to predict where other objects are going, such as cars, or people on a sidewalk, for example).
I’ve always had a really crappy sense of direction, and several driving instructors still shake their heads when they recall my failed attempts at controlling a car. One even retired. My sense of direction-centres have never really worked well, and now they needed to be removed wholesale, using lasers. Hilariously, the tumour also sat on the bit of my mind that protests if I become physically dirty, so while I still shower regularly, I do so for the good of others rather than my own comfort. Aren’t I nice?
The tumour was removed in January 2018. The day before, I was told I had a one-in-five chance of dying on the table, so the meal that preceded the surgery was pizza, beers (multiple – a headache would have been the least-worst outcome) and ice-cream – there’s the impulse-control again.
About 70% of the mass was excised via an awake craniotomy, during which I was woken up, and, off my face on a gram of fentanyl and with a GCS (Glasgow Coma Score) of 11, me and the anaesthetist quibbled over the vagaries of FC Barcelona’s midfield systems while the surgeon interrupted us with instructions to raise my hand, wave, make a fist, ‘stop fucking talking’ and so on. That was quite a day, really. I was told by the anaesthetist that doing anything with a GCS of 11 (a fairly high awareness of pain) makes me ‘actually pretty hardcore,’ but he’s not worked in the UK daily news media and I have. I can work in some pretty compromised states.
The remaining third of the tumour was then chased around by six months of combined chemo and radiotherapy. Halfway through my chemo treatment my son was born, and at about that time a friend suggested various lotions and potions I might like to try to ameliorate chemo’s debilitating ‘everything-except-lemonade-tastes-like-rancid-lard’ effects. I’d been reading up about obscure things like resveratrol (present in dark chocolate and red wine! Woohoo!) sulphuraphane (present in broccoli!), turmeric, garlic and reishi mushroom extract, so I started on those. I gave up drinking altogether but am back on it now, just for the lols.
My steroids also made me very obsessive, so I found myself getting up at 0500, making garlic and peanut butter on toast and juicing raw garlic, turmeric, kale and carrots, then reading for an hour before bringing my baffled, sleep-deprived wife a coffee. Mercifully, that didn’t last long. The 30lbs I put on in the process, though, stayed with me for a while.
I knew nothing of CBD oil prior to diagnosis, but a full dropper of 3500mg twice a day was recommended, and really helped during chemo. Having been a college student, I’d obviously had exposure to the THC side of the noble cannabis plant in my youth, but it always made me paranoid, lightheaded and jittery. It never once calmed me down or seemed to be ‘my thing’. Beer, on the other hand, really was my thing, and as I discovered in college, combining the two proved totally disastrous. So, I’d avoided cannabis for about 20 years, despite being in a band and living in London twice. One day in 2019, though, that changed. A friend of mine’s cancer diagnosis had improved dramatically on starting with CBD and THC, and he sent me some proper THC oil, with some, in retrospect, pretty vague dosage instructions, and I started doing CBD and THC in combination.
Initially, I got a bit, shall we say, ‘over-excited’, and accidentally dosed myself with a bottle of Malbec and, it appears, the equivalent of about 15 drops of THC oil in one hit. [At least five times a regular dose! – editor] Boy oh boy, did I see some things that night. Holy cow.
Suitably chastened in the presence of this new and mystical oil (and its assertion that God is, in fact, a short, Pacino-esque character with a nasty grey jacket on), I left it well alone for a little while. My symptoms – generalised angst, poor spatial orientation, rages, tiredness, confusion, numbness in my left hand and left foot etc) all returned. So I started again, properly this time, using the guidelines provided and, slowly but surely, developed a tolerance. By the time my next scan came around six months later, the tumour, battered by successful surgery, chemo, radiotherapy and six months on my new oil regime, had all but disappeared.
Rendered somewhat cocksure by this, I continued to take successively larger doses daily, and am now up to four drops of Magical Mystery Oil per night, with no real effects the following morning besides an abiding affection for really, really slow dub.
My toddler – who I had little chance of meeting at one point – now has a slightly vague, occasionally jumpy but otherwise loving and present Dad in his life. A Dad who is easily overwhelmed. A Dad who needs ‘a little sit-down’ sometimes. A Dad who cries at the sink for no official reason now and then. A Dad who really wishes he could do more for his son, and be more balanced around him. A Dad who gets lost in his own house. A Dad who feels survivor guilt, but will still die. A Dad who doesn’t mean to say nasty things sometimes but does anyway, because the prescribed drugs that keep him alive also happen to make him feel like he’s going insane. A Dad who is by turns amazingly hopeful and incredibly bleak. A Dad who has hallucinations sometimes. But a Dad who loves him nonetheless. He has faults, but he is still, and will always be, a Dad. Given the futures on offer when all of this started I think that’s remarkable, and so does my oncology team, whose predictions are all officially BS now. Long may they continue to be dramatically incorrect.
My Regime – I’m inherently lazy so I don’t stick to this religiously, but this is pretty much what I take daily:
The Official Stuff (Doctor-approved damage limitation meds)
1g Levitiracetam (also known as Keppra) to control non-photosensitive epilepsy and seizures 0830, 1200 and 1700. Miss one of these by an hour, and I’ll know about it. Miss one by three hours, I’m in big trouble.
Supplements
Turmeric and black pepper caps x 4
Sulphuraphane caps x 2
CBD oil (2500mg) – two full 1g droppers
Centrum 100% Vitamin supplements (one per day, just in case I miss anything)
Ashwhaganda caps – two per day
THC: one drop 2000, 2100, 2200 and 2300. Lead time is about 45 mins, so by 2230, you’ll be as on it as you’re likely to be. Go to bed if it gets a bit too much. Sleep at 2330, wake up (toddler-assisted) at about 0710, prepared to feel a bit unsteady for an hour. But oh, so rested and mellow.
By all means, drink on weed and all of the above if you like – it won’t kill you. In my experience, though, it just messes with me and makes me paranoid, and if I drink I will have no recollection of much after drop 2 anyway.