Dear reader,
Vid Warren is an incredible human being who got some really bad luck. He had always loved his online presence. He coded his website from scratch, created a siteswap generator (juggling notation), before his diagnosis he was posting regular facebook updates and blogs. After his diagnosis, he instantly went offline. He was confident that once he beat cancer he would then write his heroic blog. I urged him to write. I truly believe that his story is so inspiring that all his fans would really benefit from being let into his cancer journey.
Unfortunately, he began writing the below blog far too late. He was unable to finish it before he stopped communicating affectively. He asked me to edit and finish his blog. Vid and I have been a couple, a team, head-over-heels in love for the last 4 years and counting. I am sure you can appreciate how damn hard this is for me to have to finish this. I have tried to keep his tone, and only add what I know he wanted people to know. To say it is finished wouldn't be right. It is as close as I could get it.
Tess Cartwright
This subject refers to the last year and eight months of my life. I have added a little "coding magic" to make it as long as you'd like it to be. If you are interested in the section you are reading, click on the sub-heading for more, related content.
You may have been wondering why you hadn't seen me lately.
I feel confident in saying I had a good diet. Apart from the 150g bar of chocolate I would regularly eat, it was mostly home-cooked, often organic meals three times a day. I would not have traded my diet for a random choice from my phone.
My girlfriend and I were very active. Often cycling up to 75 - 100 miles a week on bicycle adventures. We also went to the gym twice a week to be tortured by the fit instructors so we could go home and compare our abs. Our brains also got regular workouts with our juggling practice., we loved coming up with sharing patterns together with the aim of putting them in our show Beatrick.
At the time of diagnosis, I was twenty-three. I had been a teetotaller for 6 years. No drugs whatsoever (except once, when I was nineteen; it was shit.) I also include caffeine and alcohol in the list of drugs. I was at the peak of my freelance musical career, letting me live and have one of the best and most varied calendars that I can think of. My mind was clear.
If you had asked me before the diagnosis if I thought I would get cancer. I'd have answered that I would have to be in the bottom one percent of population. I am in the bottom one percent of the population.
My symptoms seemed to creep into my life in January 2013. I began sleeping fourteen hours every night. My face had a subtle smirking look all of a sudden. My girlfriend and family remarked on my new facial expression often. Headaches seemed clear enough to bring this to my doctor. I went to my GP- Emerson Green. 9.4 miles from my house... on my bike. We talked for a while and she recommended a test. The test would rule out a number of things, including cancer. I booked in a date with the nurse and felt relieved as I'd finally know what it was. Did I fuck. I went back to see the doctor the next week, she told me that all the tests came back negative... "Maybe it was my beatboxing."
That was a weight off my mind. No cancer. That disease that everyone fears. I still wasn't anywhere close to knowing what it was though. Since my first visit I had begun puking, before I even was able to bring it up she said:
"As long as you aren't puking we may as well wait".
I briskly informed her that I had in fact thrown up the night before, expecting her to change the diagnosis. She didn't of course, she brushed it aside with:
"Oh well, it was only once."
I understand that it is hard for doctors to know what to do. They see a high number of patients a day and they can't possible diagnose all of them. I sympathise with them in general considering the amount of people stuck in a routine that is detrimental to their health. I get that it's hard to diagnose something so complicated, especially with the politics of a GP's office and where their money will be spent. What I don't understand is how a doctor can take a look at a perfectly healthy, young, intelligent man and just give up. I knew there was something wrong, my girlfriend knew there was something wrong. I was not myself. She may not have known why, but a doctor needs to find out why or pass me to someone that can.
I had just moved to Redland so I decided to get a second opinion at the Whiteladies Medical Group. It is incredible that two surgeries in the same city can have such a drastically different protocol on how they treat and respect their patients.
My head was pounding and my complexion was an unappealing grey hue. As customary in a British surgery we waited in a queue to register for my second opinion. I suddenly felt the vom-a-tron gurgle, I was getting my 5 second warning. Luckily, my girlfriend Tess, thinking more clearly than me asked for the nearest bathroom. I made it to the bathroom with the vomit leaving my stomach... but not my mouth. It is amazing what the human body will do to avoid puking all over oneself. Of course, the staff all saw what a state I was in and agreed to see me straight away. A silver lining to my puke cloud.
By the time I finally got my diagnosis (on my fourth visit to the GP) I was sleeping fourteen hours every day, feeling down, headaches when waking up, headaches in general, vomiting, pissing myself on a train, losing control over half my face and the most troubling one of all... my juggling was going downhill! It really was a kick in the arse. My numbers record at juggling only a month before (not that you care) was nineteen throws with seven balls. Upon my return from my gig in Turkey, I had fallen to only being able to get a maximum of nine throws with five balls- still better than you lot could do.
Usually, if I told someone that I could juggle five balls, they'd applaud. Luckily, I found a doctor that saw what I really needed was an MRI scan or two. She sent me to the BRI. Finally, I was getting what I needed. Some answers. A month and a half after my first visit to the GP, I finally had an answer. Medical proof I would rather know. Brain cancer.
Throughout, it was probably the worrying that kept me sane. I much prefer that than the boring nothingness. Back then I had a riculous drop to a poor reading level, a slip to a half-unconciousness level, a lack of musical direction. My life had been turned, overnight, upside-down. It was the worrying that kept it in perspective, that kept it real instead of fantasy. With that, I learnt to keep my worries at a reasonable level. After all, your worries are all on the table, plain to view.
Over the next four months I was bounced between the different hospitals in Bristol. Beginning at Frenchay where I got my first craniotomy, also known as the zipper into my scull. At that point they took a biopsy and as much of the tumour they could without damaging my brain. To be honest, when I woke up after that first operation I felt better than I had in months! My headache was gone, my mind was clear and within just a couple of days I was up walking about and of course juggling again. Unfortunately, when they realized that I had not one but two of the dealiest brain cancers (GBM and PNET) they weighed it up and they decided that despite the risks of cutting deep into the brain it was worth trying to take out as much as they could. They managed to take out 99% of all the tumours on the second operation. Unfortunately, they took out my ability to move the right side of my body along with it. I was paralyzed. Paralyzed, on the entire right side of my body... with a chance of getting it back to whatever percent. The more I put in, the more I would get out. Of course, I wasn't at 100% anyway, the chemotherapy and the radiotherapy that came next at the BRI didn't help my percentile either. However, as the Vid Warren way, I have always done best when chances are slim. Look at my music. I'm still working on it. I can say that I've come from being unable to get out of bed to getting up without any need for a cane.
The physiotherapy the NHS provided me has helped to no ends. It still does. I am so grateful for this service. Of course I am a long way off of people offerring to help me. Opening doors, picking things up, moving things out of my way. It would be great for people to not rush to my aid at any moment, but I that is just the way the new normal is. I am constantly seeing the brightside of this "new normal". For instance in my music, to be pushed back to such a low level after being at such a high level for so long. I have a new perspective on learning, playing and teaching. I need to push myself now in a way I never had before. Sometimes it feels like I am starting from scratch, I need to really push through and work harder than ever before. Some people might see this is tragic, I however am seeing it as just another beautiful life lesson. I am always the first to remind the people around me that having cancer isn't all bad, especially if you are able to stay present.
In hospital, you are at least partially isolated. Most of the time, you have the option of ringing a bell for help or like myself you can try and do it for yourself. Believe it or not, this stuff it he stuff that transforms you. Maybe better suited to a book rather than having to live it day in, day out. The main point is once I had moved to BIRU (Brain Injury Rehabilitation Unit) I had my own room and in my wheelchair I could do everything I needed to do. I had gotten used to being able to have help if I asked for it because at BIRU the focus was on becoming more independent. Out of hospital I had to constantly urge people to please, ask before you do. People are passing me things and thinking they're helping out but really, unbeknownst to them, there are about a million things wrong with that. To start with, what position does that put you in? You start at a disadvantage and, before you've had a chance, people are moving stuff out of your way whether you want them to or not. It would be alright if I were just that little bit psychic, unfortunately the operation didn't give me any super powers. What happens, is, through the best intentions, people put themselves in front of you. This is their choice; not mine. You can bet it'd be my choice if I had all my limbs 100%. Not known to them they've helped you into a rape closet. Okay, I feel I made my point, possibly one of the most important points I want to convey about my disability.
My time in hospital got better and better. It didn't start off that bad either. Frankly, I think that most people have such awful ideas about hospital that it's already started out miserable before they get there. I had my girlfriend and Mum on or as near as they could be to constantly on call. I had a range of friends and family each bringing different point of view. I started in Frenchay, then I went to BHOC - the Bristol Haematology and Oncology Centre, after that was BIRU- the Brain Injury Rehabilitation Unit. In fact, I was kind of upset that they kicked me out after so long in hospital with promise of it going on forever. There was a top notch of care giving, I flew too close to the sun.
The nurses, doctors, charity support workers and surgeons were exceptional. I felt lucky to encounter such a dream team. Just to name a few was Suzie Holmes, Dr. Alison Cameron, Victoria Britton and Dr. Dev.
Meanwhile, Tess' friends were constantly sending her articles and advice on what diet would 'cure' me. She was reading everything she could and trying to prepare our alternative approach to my healing journey. This is how she discovered the ketogenic diet. It is a diet that is presently used in Germany to compliment the other medical therapies like chemotherapy and radiation. It is a radical diet that I know is not for everyone but I have always been a firm believer that you are what you eat. There was science to back up the claims of the diet, the whole concept is based on the fact that certain cancers use glucose in your body to grow. In theory if you cut out all sugar and carbs (anything sweet even fruit, all starches and flours even potatoes and carrots) and add a whole lot of fat, then your body goes into starvation mode for glucose and starts producing an alternative energy: ketones. Ketones are an energy produced from fat that the brain can use for fuel but certain cancers, cannot. It is worth a try, a diet of butter, cream, coconut oil, avocados, nuts and veg that is low in carbs. Basically, a high fat diet is amazing. My Mum and Tess were cooking incredible meals high in fat and of course every superfood under the sun: tumeric, spirulina, ashwaganda, moringa just to name a few. (No, I did not make those names up!) I still to this day believe wholeheartedly in this diet and give massive credit to it for why I am still here today. (Depending on when you read this maybe I am not still here but you know what I mean.)
At home, I was partly nervous with nobody to help. Of course I didn't have nobody, I had Tess, who could do ten times what I could really expect anyone to do. Maybe I was just nervous of pushing our relationship in that direction. I also felt partly at rest. At least I was out of hospital. I had and have a long way to climb.
The idea of going home was pretty nerve-wracking. I was partly nervous with the idea of not help. Of course, I didn't have nobody, I had Tess, who could do ten times what I could really expect anyone to do. Maybe I was just nervous of pushing our relationship in that direction. I also felt partly at rest. At least I was out of hospital, I had a long way to climb and this was the first step.
Out of hospital we are overwhelmed with support. We were offered free tickets to concerts, Paolo Nutini, Lianne La Havas and Robbie Williams. It's funny how used to being on the other side of it I was. I was always the one on stage looking out at the crowd every weekend and now here I am in the crowd, amongst the fans. A strange dynamic ended up revealing itself to me. First, I had to let it go. Then, I had to get in the mindframe of being an audience member which is where most people are found. For me, there was one more step. Whatever happened to facing back once in a while? A lot can be learned from putting yourself into their posistion and nothing can do this better than having literally no other option.
Charities were supporting us left, right and centre. We were given a holiday to Devon in a beautiful bed and breakfast where Tess went surfing for the first time for her 29th birthday and I walked the longest walk along the beach that I had walked since before my paralysis. About 6 months later another charity bought us a holiday to Bulgaria where we met up with our friends and travelled around the 'old world Europe' country and finally ate at restaurants where they respected my crazy diet. In Bulgaria the idea of eating loads of fat is normal, so I ate like a king for next to nothing. We stayed in luxurious accommadation with terrific views. On our last day something magical happened. We went to a place called 'The Apartment' it is kind of a bar, kind of a cafe but really it is a beautiful apartment with a bunch of really cool well-designed rooms that you can hang out in. Our friends really wanted to show us because there is no where like it. We had a really nice time and as we were leaving I was hobbling along, slowly, taking my time with each step as not to fall down the steps. A man watched me intently and then began asking my friend questions in Bulgarian. The rest of us continued down the steps and left. We were walking down the street wondering what was taking our friend so long, what on earth was she talking about with that man? About ten minutes later she caught up with us and told us that he was asking tons of questions about me. He could tell I had hemiplegia (paralysis on one side of the body) and he knew a Tibetan doctor who specialized in trying to treat hemiplegia with Tibetan medicine. He treated patients out of 'the apartment' and asked if I wanted to see the doctor. She explained that unfortunately, that it was my last night. He gave her 3 precious pills wrapped in pink silk and tied with colored ropes. He gave her a link to a website that explained what they were and how to take them. The instructions were very specific, including having to take them at dawn, avoiding onions and garlic and many other terms and conditions. This begun my Tibetan medicine journey. I have since found a Tibetan doctor in the UK and have been continuing to take the pills made my the monks in Tibet. They are very spiritual and I believe they are another part of all the pieces to the healing puzzle.
Of course, I wasn't all at home. Luckily, I got to stretch out my legs, take in new sights, not go mad. This I thank. I seem to remeber a more fruitful time now than back then even, though that may have been a slight exaggertion.
Penny Brohn has been a total blessing. We feel so lucky that it is in Bristol. Penny Brohn is a charity that supports those affected by cancer. They offer retreats (We did two), nutrional course, various therapies like healing, massage, acupuncture and classes such as Tai-Chi and Yoga. There is somewhere to turn when the hospital visits and nurses are too much. Penny Brohn is a total haven and for both Tess and myself they really made our cancer journey smoother. The best part of all is when you have an appointment you don't have to ever wait. If you are late or can't make it that is not a problem, your appointment might be shorter or not happen at all. Not at all like hospital appointments, where we have sat waiting sometimes for up to 3 hours! Back to front, I experienced the Penny Brohn Centre. Most people have to wait but, living in Bristol with such a serious condition, they pushed me to the front of the line and had me doing things I usually would need desperately but isn't provided in a hospital enviroment. I began by following the nutrition course. This was refreshing as it was instant, yet 'she does not get up to her horse'. They are entirely funded by charity and one of their funders is the Prince of Wales, Charles.
At the "British Juggling Convention", aka BJC, I was my most 'at home' I can remember being. There, I don't feel alone in my love for patterns, mathematics and juggling. Tess was away on some training in France and I thought that meant I wouldn't be able to go to the BJC 2014 but luckily I have the best friends on earth. Some friends of mine from the Ladybird Arts Collective arranged my transport, a caravan and a ticket to the BJC. This was the first time I would be away without Tess' care but I had confidence in my strength and in my friends. Even though I only had access to one of my arms, I could still juggle three balls.
One night stands out to me. I decided to do a Renegade - I.e. an open-mic but with about fifty times worse audience. These are pissed jugglers. All I had to do was beatbox for them. Perfect. I was going to finally see what everyone else saw. I signed up for third or forth up with Russell Wells as stage manager who held the mic for me. I came down to plan it out. After some thought, I came up with a brainwave. What if I planned everyone in the audience to feel sorry that I'd dropped my stick - when really, it was all part of the act. I began beatboxing and then very convincingly, I dropped my stick. I waited a couple of seconds with just a few sounds breaking the tension- though not entirely at that - and then I magically revealed my harmonica that had been hiding in the hand with the stick and beatboxed into a harmonica. The crowd went wild. I finished beatboxing into my harmonica. Everyone was satisfied. The problem that I had now was how am I going to get my stick back up. Enter Russell Wells. I made my beatbox as basic as possible until Russell realised what was going on. I needed my stick. So when Russell went to get it, all was well. Of course, that was a trick to the audience for as soon and he handed it to me along with a second harmonica I tossed the stick to the side and did my second harmonica piece in a different key. All in all: Harmonicas two - Sticks zero.
The best and furthest holiday we went on was the most expensive (not bought for us by a charity) and the least planned. In September, we met with my oncologist who informed me that I should not fly in any airplanes as it is now too dangerous due to the pressure in the cabin. The appointment was very dour. The emphasis on being my 'comfort in the coming weeks' and 'not much time left'. The only thing that I could think of was how I have always wanted to go to Madagascar. I love nature, sunshine and wildlife. Madagascar to me, seemed like a foreign planet, something so unlike anywhere I had ever been. I wanted to live before I was prepared to die. So, Tess and I over the next two weeks planned a trip that would last three weeks. There were many risks involved but to be honest the thought of dying from a poisonous bug bite or a crazy Madagascan driver appealed to me. I was fearless about the trip. As long as I could stay on my diet, I knew that we could get through it and enjoy the trip of a lifetime.
We flew from Bristol to Paris and then from Paris to Reunion. Reunion is a polynesian island off the coast of Madagascar. Reunion was definitely a different landscape to what we were used to but ultimately, after a 3 hour jet-lagged walk around the city we concluded that it was still Europe. We just spent those few hours there and then the next morning we flew the two hours to Sainte-Marie. A Madacascan Island off the North East coast. We had arranged to stay in an Air BnB and when we got to the airport, Mark, our host was there waiting. Instantly, we felt at home with Mark and his family. We were so lucky, Mark had literally put his new resort on the AirBnb site only a few weeks before we had started planning our trip. It was a brand new build that they had been working on for 7 years. We were instantly in heaven. We were given a gorgeous little open-air cabin that was a stone's throw from the Indian Ocean. As soon as we arrived and had put down our bags we met the whole family, luckily Tess speaks French because besides Mark everyone else we met on our trip didn't speak any English at all. Tess was able to explain the ketogenic diet and that was it, Mark's wife Peggy designed a menu for me that was out of this world. We knew we had come to the perfect place for our adventure of a lifetime. Mark was able to organize any trip we wanted whether it was a perfect sunset canoe ride when we saw a whale or our excursion to the mongrove. It was a difficult terrian to negotiate with my disability but I just took my time. We were in no rush ever, we were living my dream. Everyone was so generous with their time, we had various guides that we hired to show us around. A few of them wanted help out by carrying me. There was never any asking, just before I knew it I was being carried like a sack of potatoes, like their bride to be or on one occasion like rucksack. Not many people choose Africa as a destination when they are disabled because it is next to impossible to walk over the dirt, rocks and trees. Once we realised how difficult it might be for me instead of being frustrated we just changed the type of trip it was going to be. Instead of a trekking rainforest trip, it quickly became a life-changing snorkelling trip. Neither Tess nor I had snorkelled before and as soon as we put our heads in the water we were in complete awe. There is so much life under the water the moment you stick your head under. The coral is so vibrant and you can literally watch it breathe. There were every single type of fish you can imagine, clown fish, angel fish, swordfish, eels... the list goes on and on. We went snorkelling several times, each time was more impressive and I felt like I got to witness a part of this world that some people may never experience.
My favourite book is Life of Pi. When I saw the movie, I thought they had embellished the flora and fauna. I really thought, there is no way there is that much life everywhere. I didn't believe it until I went to Madagascar. Which is a bittersweet realization. I realised the reason I didn't believe it is because there really isn't as much life in every inch of this incredible earth as there once was. Even in Madagascar, we could see that there were countries from all over the world pillaging the resources. They have lost so much of their rainforest and oceanlife in the last fifty years. Everyone is fishing at all times of day. They are burning the forests in hopes to plant crops and sell them to China and India, maybe they can support themselves or earn a better life if only they can get more money. 90% of the flora and fauna in Madagascar is endemic. Which means once it is gone, it is gone. I am so lucky I got to see it in my lifetime. Every day Tess and I think of that trip, I am so happy I got to see if before I die.
After our two weeks of absolute bliss, we woke up to fly to Reunion Island where we were going to spend a week easing ourselves back into Europe. When I awoke that morning however my body was done holding out. I couldn't speak, I was sick and my heart was racing. I managed to get to Reunion and luckily we met a woman who lived just five minutes from the Reunion airport and let me sleep at her flat for a few hours before we continued on our journey. Our next destination was our new friend, Seb. Tess found him on couchsurfing. We have hosted many people in Bristol in couchsurfing and this is where our karma has cashed in. Seeing as I wasn't feeling at the top of my game it was perfect to stay with a Buddhist massage therapist. We had a cozy room and bathroom to ourselves. He had a temple where Tess was able to do her meditaion each morning, he also had two affectionate cats. We didn't really leave his walls over the next week. We played games, cooked food together, had the most incredible massages and Seb finished our visit with a stunning buddist ceremony for us. All in all it was the perfect visit to Reunion, even if we didn't really see much of the island.
I pumped my body full of steroids to make all my symptoms go away and then we flew back to Paris. We stayed in a fancy hotel in Paris for 24 hours, watching movies, cuddling and preparing ourselves for the holiday come down. We flew back to Bristol, back to winter.
Since then, I have been slowly getting worse. I remain present and truthfully I am grateful for every single day that I am alive. We have been planning this party to celebrate my life because my life is something to celebrate! I am proud of all I have achieved, I have always lived from the heart and have tried to inspire others to do the same. I have always pushed myself to learn new skills and challenge myself in new ways. This is what I want from the party. I want people to learn two skills, and if that wasn't enough, I want them to try them together. It sounds hard, and it is hard but that should never be a reason not to do something. Before I became out of action I was working on a one-man-band set. I was drumming, playing keyboard and beatboxing all at the same time. I was trying to perfect my drumstick juggling while drumming and my juggling while playing the piano.
My mission in life has always to try and do what hasn't been done before. Considering how rare my cancer is I will venture to bet (I don't gamble but you get the idea) that I have survived the longest with having two rare forms of brain cancer. The odds have always been against me, why should the end of my life be any different.