Here is important information any cancer patient should consider learning about as it could save their life, it did mine. Although much of what I write here can be seen to have positive effects on multiple of the headers, I have added them to help make it easier to navigate. This is a moderate amount of text to read in one go, with lots of links to click and googling to do along the way, so you might not want to do it all in one go!
When you settle into “what works” you effectively stop growing as a person. You stop trying new and different things, expanding your mind, learning new skills and finding new ways to connect with yourself, others and the world around you. Make an effort to always be learning, growing and trying new things. Having this mindset going into cancer head first as we all do is going to help you as if you don’t want to learn to change your destiny awaits you. Question absolutely everything, it’s not rude! And do your own research, you deserve the best!
INTRODUCTION
I find many people ask me what I do to support and outlive my terminal cancer diagnosis as long as i have. So if you’re looking for a TL;DR run-down of my diet, drugs, and whatever else I feel is important to say about cancer, this is for you. This may seem extensive at first sight but is only some of the information I feel is more important for cancer patients to know. I STRONGLY ENCOURAGE YOU! to research ALL information presented to you both on and off this page to make sure you’re making the correct decisions for yourself. KNOWLEDGE IS POWER! I hope this post will help you on your way to understanding and managing your own disease. This is written from my own experience and I am absolutely not a medical professional, I am a software engineer come self-taught and self-appointed clinical researcher who researched his way into a remission.
The practices doctors use for patients within our National Health Systems include only a narrow sample of available treatments and approaches being successfully used for cancers worldwide. For example, mainstream medicine doesn’t consider your gut or diet to have any effect on cancer, which I find more unbelievable the more I learn. My understanding of the situation is no doctor adhering to the rules is allowed to discuss anything with patients that is not hard pressed in clinical literature and has “approval” – for probably a multitude of reasons. Understandably done in an attempt to protect people, because the studies that prove the legitimacy of treatments are still in their infancy such as with clinical trials. It could also simply be because the companies that govern what treatments are allowed in particular countries are slow at updating the rule book doctors have to adhere to when treating us. Meaning that even in our more developed countries many people die needlessly due to what seems to be slow processes of updating the curriculum our national health care uses. These deaths can be reduced or postponed through sufficient self education by the patient, I know this since I find myself in this very situation.
The majority of other patients I speak to are unaware there are ways of fighting cancer their doctor hasn’t informed them of, pair that with people not wanting to get too involved in their own care because of the pain associated and you have a stressful concoction from what boils down to what can be merely a lack of knowledge. Some of these cancer fighting methods not being utilized by our doctors could even work synergistically with the mainstream treatments they are already prescribing to cancer patients. With the right knowledge, you even have the potential to cure yourself of a cancer deemed terminal by the NHS… apparently. There is a huge learning curve that sits between the information available on cancer, lifestyle and the general public to whom it could benefit. This is I believe in part because the vast majority of the general public don’t sit around all day researching even when they have a diagnosis themselves. I wonder even if they wanted to, would they know where to begin? I have a few years of research under my belt now and having worked with some leading oncologists and integrative oncologists alike such as the late great Dr Etienne Callebout, I feel an overwhelming desire to share that this information exists and is worthy of your attention. Patients should be made more aware of this stuff. Most of this information isn’t given via the NHS so you not only have to realise this information exists on your own you then have to get educated on it alone as well. To do that you have to read a lot of books, watch and listen to infinite lectures on everything from cellular microbiology at Khan Academy on Youtube all the way through to investigating the use of full extract cannabis oil, soaking up a lot of clinical studies and papers along the way. That is all very time consuming and requires mental capacity at a time when cancer is turning somebody’s life upside down already. Believe me, I’ve been there. As I’ve made it this far however I hope to provide some “cheat codes” by condensing the important stuff I’ve found that helps and has helped me here in one place for you to go learn more about yourselves. Giving yourself a better quality of life and potentially saving your own life… for a bit, we all die eventually of course.
The standard model of care currently treats what’s known as the hegemonic somatic mutation theory on cancer in which cancer is considered a genetic disease, and has been widely accepted as factual rather than theory, leaving a lot of people naturally negating dissent. The “war on cancer” was waged more than a century ago but still, even now in this day and age we believe we live in the stats have crept in my lifetime from 1 in 4 (25%) to 1 in 2 (50%) of us get cancer in our lifetimes. “Despite over a century of intensive efforts, the great gains promised by the War on Cancer nearly 50 years ago have still not materialized. Ongoing critical analyses have aimed at clarifying the sources of misunderstandings at the root of the cancer puzzle while providing a plausible and comprehensive biomedical perspective as well as a new theory of carcinogenesis that is compatible with evolutionary theory.”(Link to paper). What this means is that there is more than just one theory on cancer, meaning all therapeutic options offered to us via the NHS relate to specific theory only. Seems crazy to me that we put the majority of our trust and efforts into a few of many theories when receiving only standard treatment alone. The unfortunate reality is that most people wait until the conventional treatment has run out before they consider any of the other multiple theories and utilize treatments for as many of them as they get benefit from, I know this because I did the same.
The current NHS treatment plan is to offer up standard mainstream treatments as 1st and 2nd line therapies as these are used most often and therefore have the highest trust profile associated with them. This means waiting until patients have endured varying amounts of Chemoradiotherapies, biopsies, operations, scans and doctors’ appointments which negatively affect their immune system before offering up clinical trials using new immunotherapies which rely on a healthy immune function to work appropriately. All of which happens without being offered any real advice on lifestyle and your immune system in preparation for any of it. Nevertheless, these new immunomodulatory drugs (whilst still very new) are being used after the standard treatment has destroyed your body, and are showing to give improved results over the standard treatments overall. Now imagine if the NHS had the resources to test people’s cancers for genetic weaknesses and paired them with appropriate immunotherapy drugs whilst teaching them how to improve their immune system diet and lifestyle as they go. I believe if we used this approach more you would often find better survival and quality of life for most people, and definitely for the terminally ill. But you would also find people being generally in less need of the number of expensive pharmaceuticals consumed each year by people suffering from their own lifestyles too I guess.
I much prefer the ideology of being free to peruse all approved and unapproved treatments and do the research for myself and make my own decision on what treatments I feel and science shows will work for me and my cancer. This is what I’ve managed to do and I hope to empower as many people as I can to do the same. I understand the NHS now do certain testing when approved targeted therapies are available but you shouldn’t always rely on what you’re being told to be the whole story. You must do your own research as the drug I researched (Nivolumab), was illegal and unapproved for my cancer type when it put me into fast complete remission from an aggressive terminal cancer which had progressed within my lymphatic system. After multiple chemotherapies, radiotherapy treatments and a life changing operation, I was deemed terminal and sent away to wait for cancer to win. Nivolumab is now as I write this fully FDA and NICE approved for my cancer type (ESCC) in the UK. So if I’d not found this drug for myself by using the tools and knowledge in this post to my advantage I should have just got unlucky and died 6 months before the introduction of this drug to the UK market and was made available on the NHS. I can’t help but wonder how many people fall on the unlucky side of time with their perfect treatment and want to help those people realise theirs before it’s too late.
You can go to the NICE guidelines page for Nivolumab right now (as I did when the process of passing it was expedited thanks to the Covid-19 pandemic I inducing fear of chemo and its effect on immune systems during a pandemic), and click on the supporting evidence document available which shows the efficacy of the drug for my cancer type; (EVIDENCE for Nivolumab working with recurrent ESCC). You can see in this document that the numbers of survival on Nivolumab are better than the control of standard cancer care for sure, but how do I believe I achieved a complete remission from this drug? If you were to ask my oncologist they hoped the treatment would do something positive but weren’t convinced at all by my drug of choice initially as I chose it over a new type of radiotherapy SABR. I worked hard on understanding my cancer, oncology, genetics, diet, body, mind and immune system to help with the efficacy of the treatment- and I believe it’s this multi-pronged learning approach that’s allowed me a complete remission so late in my cancer game.
There are thought to be two types of cells when it comes to cancer, fast dividing and slow dividing (slow dividing also known as stem cells). These stem cells can be thought of as the ‘seed’ for cancer, and the fast dividing cells are born from within it. With more and more cancers stem cells showing they can double down and come back stronger after these treatments (for example; Radiotherapy targeting cancer stem cells “awakens” them to induce tumour relapse and metastasis in oral cancer). Unfortunately, the standard chemo and radiotherapy can only be effective on the fast dividing cells and not the stem cells. (Shit! I remember thinking, nobody told me that before I had all those treatments…) Cancer stem cells with their varying levels of innate radio-resistance are so smart they are even able to utilise a process called autophagy. Autophagy can begin after fast metabolizing cells have been killed off by chemo/radiotherapy treatment, the remaining unaffected stem cells metabolize those dead cells into energy to make more! However, even though the mainstream treatments have no effect, interestingly enough your immune system can kill the stem cells! With plenty of studies now showing you can take low risk, low side effects, cheap off-label drugs and supplements to help stop your cancer from proliferating! Pair that with what we are now learning about a healthy lifestyle and who knows what’s possible, right?
OFF LABEL DRUGS
Did you know that ~80% of your immune system is in your gut? These immune cells are key to managing infection within your body. This makes the notion of diet not affecting cancer seem ridiculous to me, especially if you’re on a treatment that affects your immune system which is only… all of them. All cells in our bodies use the food we eat for energy and unlike the common known theory that cancer cells feed on only sugar (glucose), they can actually be smart enough to up/down regulate metabolic pathways to feed on glucose, glutamine, fatty acids, ketones and more! That means cancer patients like myself who were programmed by trained dietitians to maintain weight by overconsuming dairy and carbohydrates in order to maintain weight or “bulk up” as a pre-requisite to treatments may well be just feeding the cancer cells exactly what they want as we and the doctors pin all hope on the chemo/radiotherapy destroying the fast metabolizing cells, completely ignoring the stem cells. This is how it’s possible to hear about somebody having an operation to remove their cancer and x amount of time later it returns, and by this point, the cancer has usually developed smarter in numerous ways.
When fighting any illness being of optimum health whilst doing so is going to help you. The more research on life extension and cancer being conducted the more our lifestyle is proven to be paramount to living with cancer longer as opposed to dying of it sooner. There are ways of finding out what any particular cancer prefers to use for energy which is known as its metabolic phenotype. By limiting foods in your diet and using off-label* medication and supplements you can help down regulate the uptake of certain foods your cancer uses to feed itself.
*Unapproved use of an approved drug is often called “off-label” use. This term can mean that the drug is: Used for a disease or medical condition that it is not approved to treat, such as when a chemotherapy is approved to treat one type of cancer, but healthcare providers use it to treat a different type of cancer. Or another example would be Metformin (a drug given to diabetics in relation to blood sugar) given to cancer patients whose cancers’ up-regulate glucose. With the added benefit of perhaps helping the mainstream treatments be more efficient – seems like common sense, but not to mainstream medicine just yet.
The Care Oncology Clinic in the UK consists of a group of well established oncologists providing a selection of off-label medicines including Metformin to people with cancer as part of a clinical trial and they’re based out of none other than Harley St, London. Very reputable and friendly oncologists and an accessible way to get 4 of the off label drugs that are shown to stop cancer proliferating delivered straight to your door. You can always try and get access to Metformin for cancer along with others from your GP (If you can talk them into giving them to you, Good luck ;)!) Another of these off-label drugs is Mebendazole which is proving to be a powerful but simple anti worming drug: Joe Tippens covers lots of information about its use in his blog which is another amazing resource of information. Or check out these studies I found with a quick google search (1, 2, 3, 4). I explain how to research these things for yourself later so you can go research atorvastatin and lipid ibuprofen.
Jane McLelland does an excellent job of explaining how you can use off-label drugs and supplements to kill off starved cancer cells, and this is where I began finding interest in cellular biology, finding an understanding of cancer’s many complex mechanisms began after reading her book. How to Starve Cancer describes a metabolic approach to cancer treatment alongside the mainstream – by utilizing metabolic pathway modulation. The book helps you learn more about how cancers feed via the ATP in our cells. It’s much easier to read than you might think and is a great resource for someone living with cancer. This free YouTube video interview with Jane on YouTube explains things a little even if it may be a bit hard to follow at first. In Jane’s book, she guides you into starting your own “Metro Map”, where you list out all the potential pathways your cancer cells can be using to feed itself and find specific off-labels or supplements available for blocking uptake of said Pathways. Jane also has a Facebook group which can be a helpful resource for building a “metro map” – She only requests you read the book before joining.
The Metabolic Approach to Cancer by Winters and Kelley is a great book which covers everything Jane doesn’t, surrounding the evermore researched theory of a metabolic approach to cancer that is proving to give some incredible results. It also speaks highly of a Ketogenic diet however this is not something I followed myself but the majority of the rest of the book I found useful. If you’re so stubborn about disliking books that you wouldn’t read any even if to save your own life, then please at least get this one!
DIET
All that being said by taking off label medication you can help stop your cancer make use of the food you eat, therefore coming in second to the actual food you are eating – AKA your diet. Diet is a huge topic when it comes to cancer so if you’re unsure where to start with altering your diet and if time is of the essence I advise you to learn first about intermittent fasting, or time restricted eating. In this modern age, we can eat whatever and however much we desire, for as long as we want to so changing our diet can be difficult. Not only does the programming of advertisers make us turn to bad food as a way to deal with stress, but food is also in our cultures and not often in healthy ways. Putting aside how much or what you eat, you should pay attention to when you eat. This can be just as important as what you eat, if your body is expending an effort to digest food all day then it’s not using that energy on repairing itself and completing all the other tasks your body does to keep you alive day to day. I’ve found anything from 12-20 hours to be good for me but generally, I aim for 2 meals a day with a 6-9 hour gap in between, but I started with lower length fasts and worked my way up slowly increasing the time as I went. Just have a play around starting slow and see if you can skip breakfast 2 days a week, pay attention to differences in how you feel on days fasted to not fasted. Do you notice more energy or less… are you sharper or more groggy – listen to your body to find what it likes as we’re all different.
If I was to define my diet simply it would be more of a list of rules I aim to stick as closely to as possible as opposed to a list of eat/don’t eat. Low Carbohydrates (Only complex carbs), low protein, no sugar, no processed or pre-created meals or sauces, mainly pescatarian (high omega oil content deep-sea fish), and aim to eat only fresh foods that have had a minimal amount of processes inflicted on them. You can use fresh or dried organic herbs and spices to flavour your dishes.
I aim to keep everything fresh whole food and as lower GI as possible. The glycemic index is a tool that’s often used to promote better blood sugar management. Several factors influence the GI value of a food including its nutrient composition, cooking method, ripeness, and the amount of processing it has undergone. The GI tells you whether a carbohydrate-containing food raises blood glucose levels quickly, moderately or slowly. Naturally, as a cancer patient having a slow release of sugar means your body uses more of the sugars as energy to function, rather than being available for your cancer to gobble up. As well as allowing you to digest your foods slower, this will help with rapid gastric emptying which having experienced an oesophagectomy has been helpful for me. Also with the slower release of energy, it will help keep your meal quantities down (aka Fasting)! Here is a site on the glycemic index for help with low GI foods (Also good for diabetics).
No dairy – There are plenty of dairy replacements these days but honestly if you can go without all together then even easier. If not make sure you have 0 sugars in whatever you buy, The healthiest I’ve found is probably hemp milk, it’s a different taste but works well in tea and coffee and is packed with good fats, omegas and more.
No packaged or processed foods/No pre-created meals or sauces, – It amazed me when I realized that I could walk into most high-street supermarkets here in the UK and if I was sticking to organic fruit and veg it renders 99% of the produce on the shelves inedible. Keep things fresh, it takes time to learn to cook from fresh I agree but you get faster and better at it the more you do it. Remember you’re investing in your health by doing this, it’s worth it more often! Instead of watching that Netflix series again try reading up on some freshly cooked recipes and do some ingredient shopping, better yet grow some ingredients!
Limit the amount of beans/legumes you eat as they are high in protein. The benefits of a low-protein diet mostly apply to people with specific health conditions or diseases, rather than those who are generally healthy. This is because decreasing protein intake can ease the workload of the liver and kidneys, which can be beneficial for people with liver disease or impaired kidney function. These are also organs that get overworked when on any mainstream cancer treatments. Give your organs every chance they can get to process the drugs that are being used to give you time and save you.
Organic or Biodynamic wherever possible – There are so many terms and phrases; organic, non organic, biodynamic, GMO free, Vegan, Vegetarian etc. it all gets a little complicated. Organic foods offer higher trace mineral content generally speaking and trace minerals are key to human health, so I like to shop as organic as I can. Organic foods are called as such because they are produced without the use of chemical fertilizers, pesticides, or other artificial chemicals.
No snacks! If you are a late night snacker and can’t resist the urge then have a few olives or a wholemeal oat cracker. These “rules” are all in an ideal situation, get the best food you have available to you and pay attention to how you feel as time continues.
You need to be eating/drinking fermented foods and drinks. It’s huge when supporting your immune system and the microbiome is massive when it comes to fighting off any illness/disease as it’s directly linked with your immune system! Remember that up to 80% of your immune cells are in your gut part of which is the local mucosal immune system which is part of the largest component of the entire immune system. So fill your gut with good bacteria! Loving Foods is a great site for easy, raw, and tasty ferments. Or if you have the time, do them yourself at home (my mother brews mine for me). My go to’s ferments are Kombucha Green Tea, Sauerkraut and fermented beets, you can find many tutorials online on how to make your own.
People don’t like to hear that if you successfully clean up your diet it could also make you healthy from disease but it becomes common sense the more education you acquire on the topic, so if you treat your body right it will heal more effectively. If you can afford to make dietary changes slowly that will probably be easier for you and your body overall, although that being said depending on your staging you’d might want to flip your diet on its head instantly. If you are worried about eating enough fat for treatments look into healthy fats as opposed to unhealthy ones.
Another good idea would be to get a full body of blood work done on yourself, either by a willing GP or search online for private blood testing services. I had my full bloodwork tested as a private patient and sent my samples off to a company called Genova Diagnostics who also help you find practitioners who can take your blood as you can only use this company when being referred by a medical professional. Getting these tests done can show what your body needs more or less of in your system, as well as give you information on any food intolerance that you have and maybe unaware of, as you have that you need to address those foods to reduce inflammation helping your body against cancer.
DETOXIFICATION
Detoxification is a word thrown around a lot these days by companies trying to sell you their latest products. A lot of what you can find on the internet is rubbish and just adds extra crap into your body it has to process and excrete in your urine or sweat. I drink matcha ceremonial grade green tea in the mornings and take a few supplements before during and after hitting the sauna to boost free radicals and support my body. Exercise is very important, whilst airing on the side of caution depending on your current circumstances you should try and get out of breath from exercise at least once per day. Remember however that getting out of breath can be a 5km run, or it can be getting out of bed regardless of the activity the key is just to do it every day. I use a trampette for rebounding exercise which not only has a positive effect on your lymphatic system but also minimizes damage to your joints and helps boost your immune system. I also do general workouts and sauna use regularly. Sauna use is something that is proving time and time again to provide copious positive benefits for us. Dr Rhonda Patrick did a recent paper on sauna use. She is an amazing cellular biologist who has so much awesome information for anybody wanting to promote health and lifespan. Her paper concluded that “Sauna bathing is associated with many health benefits, from cardiovascular and mental health to fertility and athletic endurance.” I feel it appropriate to mention here that before you have any systemic cancer treatments being a young man I had the opportunity to store seminal fluid due to the likelihood of the treatments diminishing my chance of procreation. Long story short I got tested post cancer treatments to see if we would need to look down none mainstream methods of making a family. Turns out against any preconception my “stuff” was healthier than that I’d stored a few years earlier before the treatments. Whilst I’m not as spritely as you’d imagine a 30-year-old to be I do run around after a toddler now and still keep up…. most of the time anyway.
Coffee enemas – now hear me out on this, the science behind putting coffee up your bum is far too compelling to ignore when fighting cancer. So how does putting coffee up your bum help you with cancer? Coffee high in Palmitic acid when used in an enema supercharges the production of Glutathione S-transferase (GST) which is the most potent detox enzyme in the human body. It does this by getting to your liver via your portal system (blood vessels) at the other end of your haemorrhoid veins. The chemical building block for GST is… palmitic acid. Be sure to use appropriate coffee for your enemas, don’t go to your nearest Starbucks and expect high palmitic acid and results. Studies show that a coffee enema can boost the production of GST by 700% and makes sense why it could be used to help your organs process a lot of built up toxicity from systemic treatments overworking them. The caffeine even though I can’t tolerate well orally is well tolerated in enemas and offers stimulation to the liver and bile duct so they release toxins into your intestines to be expelled. If you can hold the coffee in your bowels for around 10 minutes your blood will have passed your liver approximately 4 times meaning you get a nice mini dialysis style blood cleaning treatment too. Enemas can pull good nutrients from your body as well as the toxins however so be sure to feed on plenty of nutrient dense foods post enema to replenish any good that was removed. After only 3 infusions of Nivolumab I experienced hepatotoxicity (toxicity of the liver), and more recently systemic dermatitis, I used and still use enemas and even find benefits with my skin condition.
You breathe almost constantly to survive but not often (unless you meditate) do you consciously breathe. There are conscious breathing techniques that can help clear and cleanse your lymphatic system and help to detoxify you further. Yes without any products to sell you don’t hear much about this form of self care often. The breath has played an essential role throughout human history. Breath orientated practices and meditations can be found in many ancient cultures and religions including Taoism, Buddhism, Hinduism, Christianity, Yoga, Qigong, Shamanism, Sufism, and some martial arts. Many of these cultures and religions used breathing techniques for similar reasons as Modern Breathwork – to alter consciousness for spiritual purposes, self-discovery, and healing. A great recent source of what breathing techniques paired with heat/cold shocks to the body are capable of is Wim Hof. This brilliant man has voluntarily worked with scientists to prove through his techniques he is able to control his autonomous nervous system, which has long been thought to be exact as the name suggests… autonomous. Wim has proven he can control this along with his own immune system through breathing alone to fight off the injected virus in a clinical setting. He then went on to prove he can teach others to do the same reliably. While I do not practice the Wim Hof Method religiously myself I have found other conscious breathing techniques I practice daily that I find work well for me.
Sleep is when our bodies are repaired and our memories stored ready for a new day, so good quality sleep is of great importance. Did you know the hormone up-regulated during sleep is Melatonin, which is a detoxifier. do not eat before bed, cut the alcohol and caffeine, drop the temperature of your body by 2 degrees and maintain a consistent bedtime schedule to improve sleep quality. Dr Mathew Walker who is a neuroscientist and psychologist is a good resource when it comes to sleep health. Did you know that the WHO class night-shift work patterns as a probable carcinogen due to the disruptions of your sleep-wake cycle?
There are many toxins found outside your homes such as car fumes, second hand tobacco smoke, toxic chemical fumes, radiation and other environmental pollution you cannot control the creation of, so do your best to keep away from these things when out and about. However, there are plenty of things you can do about the pollution and risk factors inside your home. Some examples of these are the way you prepare and cook your food, drink only filtered water and enough of it and look into filter heads for your shower. Artificial air fresheners are although smell nice also terrible for you – replace these with HEPA filters for clean air and keep your house well ventilated. Another great option is to add plants that help to purify the air inside.
MENTAL HEALTH
It’s not just your body that needs help through this kind of experience, your mind is equally if not just as important. Yes you, that internal monologue that’s currently filling your head with these words as you read them. It’s this little voice that most of us hear in our heads day to day that paints the picture of how we see the world and our reality within it. You can change this voice to be positive or negative if you are willing to apply enough effort. Practising a positive mental attitude can be very difficult when faced with the torment of a disease but does pay dividends. I found help from a book called Radical Remissions by Kelly A Turner and what she speaks about having a positive mental attitude and a reason for living, this is important for I feel obvious but not often openly considered reasons. There are many ways to improve your mood and a lot of them are things we’ve spoken about already such as exercise, eating right and meditation. There is also a Radical Remissions site you can check out.
How often do you sit down in a quiet space alone thinking of nothing for a while? Probably not often enough! Life is fast these days and more often than we realise we become prisoners to our own thoughts or our phones and we allow them to control our time. You wouldn’t automatically act on every thought you have so you shouldn’t just automatically trust them all either. Although many people believe it to be you are not your thoughts, there is large speculation on where thoughts come from however there’s no doubt they can be relentless. Constantly coming and going be them positive or negative with no switch to turn them off. Just like with physical activity and your physical well being your mental state becomes weak and tired after overuse. Meditation has helped give my mental self rest, which in turn helps with literally everything else I’ve spoken about here.
There are countless ways to meditate and whilst I own a MUSE headband which is great for actually knowing what brain wave patterns you’re creating when meditating. A theta brain wave state is what you’re looking to achieve when meditating to reap the most reward, and is a wave type similar to that when you sleep. However, I prefer to meditate with no external help just with what I have with me at all times. That way I don’t rely on anything technological with a battery that can let me down or something I can forget and leave behind. I close my eyes and focus on my breath. Some people find it easier if they imagine their chest is expanding massively when they take each breath in and out. When your mind wanders from your breath (and it will) allow yourself to have the thought, but don’t add any further attention to it, just return to the thought of your breath. The more you practice only observing thoughts the better you get at clearing your mind and being able to quieten a busy mind for a little while every day. Being able to do this helps massively with managing your own mental health and remaining level headed in emotionally intense moments throughout your journey. There are loads of guided/unguided meditation videos on YouTube to get you started if you feel you need more help, but I prefer the versatility I gain in doing it my way. I also listen to music and find it to help meditate in loud public places. Because once you get good at doing this, whenever and wherever you want.
If you don’t have people to talk to there are plenty of subreddits out there where you can discuss your feelings anonymously with people online or maybe consider going to speak to someone professionally. I have used both methods and find I get more help from my mindfulness practices than I do from therapy. Maybe I just haven’t found the right therapist yet? Who knows.
GENETICS
Genetics is becoming more and more understood and utilized in oncology these days. Finding out your cancer(s) specific genetic information could be a very useful bit of information. Not only can it help with altering your diet once you know your cancer’s metabolic phenotype, but some cancers can also be subject to many processes one of which is called gene expression profiling, this can be helpful as some expressions can be targeted by drugs. Some of these drugs can be to help your immune system fight off cancer (much like I did myself). There are more of these drugs showing to be hugely beneficial with higher tolerance and improved quality of life to the standard treatment given currently and are potentially not legal in many countries yet. With the majority of the approved ones being used as 3rd line treatment after the standard chemotherapy, radiotherapy and operation fail to succeed in stopping cancer. Which once you see what these newer lines of drugs are capable of achieving after a person has been subject to such damaging treatments prior, seems to be a good idea would be to try giving people these drugs before any of the conventional stuff that fucks their body and immune function along with it.
There are many companies out there that do genetics testing, once you’ve researched your cancer enough to know about a potential genetic approach to your treatment you will probably want to test your own, The company I used for genetics testing is Oncologica. But of course shop around there are loads of companies who do it. As part of the Oncologica package, they give you a list of clinical trials which could be of benefit to your specifically found genetics for you saving you some leg work. However due to Nivolumab being unapproved, it was nowhere to be seen on mine, so I used their tests in the end to prove my PD-L1 expression percentage to the pharmaceutical company who ended up offering Nivolumab to me compassionately via a backdoor on the NHS as I was at the end of my life having exhausted all other options.
Epigenetics is the study of heritable phenotype changes that do not involve alterations in the DNA sequence. Meaning that it’s the study of how your lifestyle and environment can cause changes that affect the way your genes work. So while eating bad food might not directly cause DNA mutations to create cancer, it looks to change the epigenome enough overtime to change how your body reads a DNA sequence. However not like genetic changes, epigenetic changes are reversible and do not actually change your DNA sequence, so making better decisions in your day to day life can have a massive effect on a hugely important grey area when it comes to cancer.
CLINICAL MEDICAL LITERATURE WEBSITE LINKS
Once you know your cancer type you can use these tools to educate yourself on your disease:
PubMed. This site houses a plethora of well appreciated authoritative medical and clinical literature which can be used to search for supplements, drugs or treatments that will help with stopping your cancer specifically or to help your body through other treatments that you may have been offered to you to get the best results from them. For example, this shows how Berberine (a simple supplement) enhances radiosensitivity of oesophageal squamous cancer in vitro and in vivo (In vivo refers to a living organism. Examples can include studies in animal models or human clinical trials. In vitro is used to describe work outside of a living organism.) I found a lot of useful information on my monoclonal antibody of choice on PubMed and sites similar – Nivolumab.
PubChem – is much like PubMed as opposed to medical and clinical data you’ll find chemical information here, if we use Berberine again as an example, you can see here it explains everything you would want to know about the chemical which is Berberine.
Google Scholar is a great tool as well for browsing the whole internet looking up articles and studies, however with it being a Google search take care to do your research into the team behind the paper before believing everything you read as not everything will be as well appreciated as with PubMed search results.
Brave is a browser that uses different search engine mechanics than Google and many more that use Google’s services to search the web. So it’s always worth a good search on here for potentially less Google algorithm bias results in your searches.
As you will need to research any drug or supplement you want to use, and you want to see any potential interactions between each of them, you can use the British National Formulary. Which is published by NICE The National Institute for Health and Care Excellence and provides some national guidance and advice. You can see drug lists, interactions and treatment summaries here which can be of help to you. Of course, you should also be discussing anything you’re taking with your oncologist who will I’m sure be more than happy to check everything with you.
You can also search on this government website for any ongoing clinical trials. If you are interested in something like this there may be something happening that matches up to your cancer type in a clinical trial setting meaning you won’t have to fund the treatment yourself. You can also approach your oncologist to discuss with them if there are any clinical trials lined up for your cancer type so you can go and research them to see if you’re interested in trying any. I learned enough about the drug I had to see it was a pretty well researched and documented drug that matched an over-expression in my genetics, but as it hadn’t made it through any approval yet for my cancer type our NHS couldn’t do anything to offer it to me directly, but luckily big pharma was happy to help when it could mean their drug being introduced to new markets, use that to your advantage if you can.
ILLEGAL DRUG USE
Now it’s time for me to discuss the taboo, and the first on the list is cannabis. Much like any drug cannabis isn’t for everybody, but the stigma and law that surrounded it had me steer well clear since I was a kid. I had already been through a Chemotherapy and Radiotherapy cycle and my operation before I hit the “fuck it” button and tried ingesting cannabis oil. I am so glad I did as I’ve found it to be a huge help for me in several ways – specifically pure full extract oil, ingested with or without food (CBD and THC) as well as the dry herb. I had cannabis oil for the second time I went through a chemotherapy cycle and it helped with side effects once my treatment had stopped. Having had my oesophagus ripped out and my stomach been pulled into my chest cavity I no longer feel hunger. This is great when it comes to fasting but not great when you forget to eat so easily, and believe me when going through Chemo and Radiotherapy your ability to tolerate any food can become unbearable as it is. Specific strains of cannabis allow me to feel like eating, which I consider a small miracle nowadays as it is otherwise impossible now. It helps with other aches, pains, and inflammation. It also helps you maintain a positive mental attitude and take the edge off a bit which can be the difference between giving up and not on a really bad day. Cannabis isn’t for everyone much like morphine isn’t, my only advice is to try it if you want to and start slow ramping up dosages as you feel more comfortable with it and if you don’t find any benefits after using correctly don’t use it. I ate about a gram of oil the first time I tried it and think this is only for those willing to submit to the experience, tread carefully.
The second taboo is Psilocybin (magic mushrooms). Psilocybin is the key psychedelic compound which is found in certain psychedelic mushrooms. This drug which most will associate with the swinging 60s can be micro-dosed or given in full doses to help in a multitude of medicinal and spiritual ways. I’ve found benefits from both methods, however, this compound is a class A drug in the UK which means by law it shows to have no medicinal benefit… yet is taking the world by storm along with many other drugs like ecstasy and amphetamines for depression, anxiety disorders, PTSD and more. This is another drug that helps me remain more balanced and is known as a “biohacker” for improved cognitive ability. Many of the leading tech companies’ developers and coders are known to micro-dose Psilocybin to help with mental acuity and productivity, it’s literally like hacking your body for efficiency with positive side effects for mental health when used correctly. Of course, with everything you should go do some research on this yourself – Paul Stamets is a leading mycologist and a supreme intellectual who has a vast amount of knowledge on everything mycology. Be sure to check out online for registered clinical trials involving these drugs. To get the most benefit with both Cannabis and Psilocybin, you MUST use them correctly as medicine, and not abuse them if a medicinal benefit is what you are hoping for.
The use of these drugs isn’t something I considered immediately, however upon my release from hospital post-operation I noted studies showing opioids are found to play a role in the development of cancer metastasis and recurrence. Although the studies are far from concluded, drugs like morphine appear to have different effects on different cancer cell types. These studies find that sometimes opioids can help stop cancer, however, sometimes they can actually promote metastasis and recurrence. A current drug often given to patients for cancer pain is morphine, which shouldn’t necessarily be the drug of choice for someone who has just had a cancer operation and is taking something for the pain. As with much surrounding medicine, more research is required to know more, and a standard understandably has to be set for a public health service. It is about time the UK and other governments around the world recognize cannabis and psilocybin along with other drugs for their many medicinal uses and allow people more freedom in their choices regarding care.
A FEW FINAL WORDS…
A note to any oesophageal or gastro junction cancer patients out there reading this, I don’t regret any decision I’ve made as it’s bought me to where I am now and I’m happy living with that. Although even with the negative side effects if I had known what I know now, would I have had Nivolumab first?… Considering the side effects I suffer daily from both my operation and standard treatments, as well as the side effects of the immunotherapy I know which I’d rather live with if I had the choice. So maybe someone can read this and make better decisions for themselves rather than just subscribing to the latest mainstream approach, hopefully, to buy themselves valuable time on this planet without many of the disabilities I own today. I have plans of writing another post specifically for patients with a similar diagnosis to mine so let me know if this is something you would like to see.
My thought process has always been to research into anything I read and if I find the research shows no help for me I move on and research into the next neighbouring topic as there is plenty more valuable information out there that WILL help you, you just have to go and find it. I hope to have given you some valuable tools to help you on your journey. If like us as people we are indeed all different in our own ways, it makes perfect sense to me that so too are our cancers, both by their origin, by the nature they proliferate and by extension how they can be managed, slowed or even stopped in their tracks. So do yourself a favour and when you next go to visit your oncologist turn up armed with questions and knowledge and turn your meetings into a discussion on what’s best for you, as opposed to just sitting and being told what your “available options” are if you have any left.
Above all when your health is concerned, listen to your body and change your lifestyle to suit it! Your ability to pay attention to your body and how you feel is absolutely paramount to approaching any of the above healthily and sustainably. At the end of the day, you are the only person who can feel what it’s like living within your own body. You need to be more aware of your own body than your doctor is and the more you learn to listen to your body and how it’s coping the better treated you will be. Both by yourself as you understand more about your body as well as from medical professionals, as you’ll be able to more accurately inform them. It makes sense to me that a lot of the time doctors would appreciate a patient who works with them and not just expects the doctor to do it all for them, after all, it is your body, your health and your life, why shouldn’t you be a little more proactive.
Ultimately I believe implementing what I’ve learned has allowed me extra time and a level of control over a disease that typically in late stages renders you helpless, and should have already long since killed me apparently. Using all of the above and more in conjunction with each other has kept me alive (and kicking) past any of the clinical expectations I’ve had as I now tackle the world of parenthood – which i’d previously thought would never happen for me.
The placebo effect is the idea that your brain can convince your body a fake treatment is the real thing. Science shows that under the right circumstances, a placebo can be just as effective as traditional treatments, the trick is to create a strong connection between your body and your brain. I believe educating yourself on cancer allows you the ability to understand the mechanisms behind what is happening in association with your body and disease. Thus standing you in good stead of empowering yourself to do the things that you know will help the problems you understand. The placebo effect is also the only real threat most drugs come up against before they get approval for wide use, and that’s for good reason as it’s incredibly strong. Within reason, if you feel something is helping you, stick with it, because even if it’s not indicated at first, it could well be doing more for you than first realised. Remember to always practice a positive mental attitude, it goes a very long way.
If you appreciate this info, would like to know more about a specific topic or disagree with something – please leave a comment below! This is the only way I will know people find this useful. Use the Contact page if you’d like to get in touch.
Of course, I want to remind you I am not a medical professional and this site and my opinions within are based on my own experiences. This information is for educational and informational purposes only and is not medical advice. I always share what I’m up to with my doctors, and so should you.
KNOWLEDGE IS POWER!
Good luck, Nate.
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