Surviving Brain Cancer in a Precarious World

in #life6 years ago (edited)

Part 20: The Health Advocates...

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After the MRI for the 3rd Scan, I again ordered a DVD of the images and a report. When it arrived it said “Unchanged appearances since the previous scan. Stable post-treatment cavity right frontal lobe. No enhancing lesion.”
So this meant I now had 3 clear scans. I felt better than ever at this point because it was showing post-treatment stability and that I would now not need to have a scan until December 2016.

The part in the report that mentions enhancing lesions basically means that when the radioactive dye is injected during the MRI, also known as a “contrast agent” the dye did not light up on the scan which is what happens when it comes into contact with diseased cells.

Radiotherapy can cause the brain to look lighter in colour when this dye is injected because although the radiotherapy is not exactly causing cancer everywhere, it still damages brain tissue, so patients that have no radiotherapy tend to have a scan where the treatment sight looks darker like a normal healthy brain MRI.

This lighter shading around where the radiation made contact with brain matter is often called a “Flare” or “oedema”. My scan showed a small area of lighter shade around the surgical cavity which makes it the area most likely to encounter a recurrence.

Unfortunately for me, the treatment that can help treat this damage known as Hyperbaric Oxygen Therapy is only available to MS patients where I live. I was offered some sessions in Manchester but at £300 and no way to be at home working or travel to work, it was not feasible for me.

This meant I had to research and experiment with alternative protocols to reduce the damaging long-term effects that come with activation of the brains immune cells that in the case of radiation damage can actually cause autoimmune issues where the body’s own immune cells fight against the body.

In many ways, I was just very lucky that I have a naturally fast metabolism. This was the one stage of my life where I was thankful that I had been very skinny and a “hard gainer” in the gym. This naturally fast metabolism I believe negates many of the issues that can come from taking AED’s to control epilepsy.

I personally found the 1 AED I was prescribed, gives me very few side effects and took maybe a few weeks to get used to the inevitable adaptation fatigue. I was however aware at this stage that my fast metabolism would not last forever meaning I would need to keep as active as possible and not have weeks of just being lazy in any sense.

That September another brilliant thing happened which was the airing of the documentary I had taken part in a few months before when I had my first clear scan. By September 2016 BBC Three was no longer on TV but available online which meant a reduced outreach to an audience outside of the already supportive UK cannabis community who are very active online with new media.

The reception was life-changing for me because it gave me crucial connections to the community and knowledge via the documentaries other participants that I had not met during filming. For my fiancée and me it was not just emotional to see the events around my first clear scan on a big screen being relived, but fascinating to learn about Jeff Ditchfild and his heroic work with Bud Buddies.

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Before this point, I only had 1 connection and 1 source for medicinal cannabis, within a week after the documentary the community reached out for me and provided me with a wealth of knowledge and support for my future.

Many people who knew me before this could probably tell that I was becoming very focused with researching the medicinal qualities of cannabis because I could see I had woken up from what we had all been brainwashed was bad in various ways.

The more people I met in the cannabis community after that documentary, the more I realized, it wasn’t just snobbery over the plant that had given rise to an unscientific policy of prohibition but also snobbery against the very community that owes their lives and quality of lives to cannabis.

I was always taught stereotypes regarding this community which had not been helped by my experience in college when there was no talk of medicinal value among the few cannabis users I knew then. I had also seen many of the bullying types in my primary school years using cannabis. This was when my fast metabolism was still the bane of my life making me a target for school children with a habit of bullying for self-gratification.

After I had finished school many of them were pale-faced and strung out but it wasn’t because of cannabis, they had long moved onto harder stuff mainly alcohol which in my school was glorified by both teachers and pupils alike.
But the community that took me in after the documentary was released was a million miles from the stereotypes upper class-snobs paint them as.

They were actually the most intelligent, humanistic and progressive people I had ever met.
I would meet one then get introduced to another and each time it was like meeting an inspirational pioneer unappreciated in their time. Thanks to them I was finally able to access oil which I consider one of the holy grails products born from the natural world.

I became even more fascinated with cannabis almost to the point of obsession because of its multi-faceted biochemistry. I was just so amazed at how much there was to learn and how much work needed to be done in genuine science communication to re-educate myself and a deeply misguided public.

For me, cannabis oil changed everything because I was getting genuine quality Full Extract Cannabis Oil (FECO). I learned that the whole country has 2 markets, one being a black market of sociopathic scammers trying to rip off vulnerable sick people like me or their caregivers with fake or impure oil at an inflated price.

The other is the increasingly organized and humanistic UK cannabis social clubs (UKCSC). Like bud buddies and TTCC awareness, they provide a professional education and connections platform for patients, caregivers and recreational users alike.

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Unlike the criminal black market, the UK Cannabis social clubs around the country have a structure of regulation where scammers are exposed and booted from the many social club groups up and down the UK.

Often these scammers try to hide their identity and try again to join these groups but I noticed that they don’t get very far in general because many in the community are of a young generation and have skills in ethical hacking way beyond my level of knowledge combined with the inability of the scammers to show any convincing compassion for patients.

I felt a lot safer after this period because I now had a lot more support from like-minded people who I could learn from in terms of cannabinoid treatments for managing cancer and I could give back my metabolic approaches to other people in the community who were also medicating for cancer.

I believe both cannabinoids and ketones can work together well given they are both neuroprotective to healthy brain cells and toxic to diseased cells. Plus they are not using the same lipid structures so I never found issues staying in ketosis while also using cannabinoids.

There was no evidence in the 3 clear scans that one was interfering with the other because it doesn’t take many open pathways for cancer to start growing again on. I knew early on that its best to throw everything at it and then narrow down a protocol that works best for keeping in remission and not having lots of horrible side effects.

This is why I didn’t end up adopting the turmeric route for too long because, for me, the turmeric was causing issues with my gut. Some people have no problems with turmeric but can have problems with MCT oil which I was fine with.
In the Beating Brain cancer Facebook group, it was clear that many people were finding success with a variety of protocols in terms of killing cancer cells but very few people were achieving this the exact same way.

This is why I believe that not only should 1 thing never be relied upon but 1 person’s protocol should never be used as a “gold standard” which is probably why the standard of care with mono-therapies such as radiation or chemo have such an awful success rate compared to what we in that group were doing.

Some of us in this group featured on internet radio stations which are an increasingly important part of new Indi media to reach out to the current generation of internet users. A lot of us were telling our stories on platforms such as Cannabis Health Radio based in Canada and Super Human Radio from Carl Lanore and his partner Alisa Profumo.

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It is in part thanks to them that the USA was providing us UK patients with a growing number of ketogenic products we could import. In 2016 the ketogenic diet was still nowhere near as popular in the UK as it was in the USA. It seemed thanks to the growing number of keto advocates in the US that a market was there for food companies to get involved in. The UK market seemed that it was still in the corrupt grips of big Sugar and carbs. Very few supermarkets were providing ketogenic compliant alternatives which can be useful for people with a sweet tooth adapting to a ketogenic diet.

For me I found success by importing Quest Bars from the US company Quest nutrition who I discovered through Super Human Radio and my friend in London who had enlightened me of Quest nutrition’s work with The Keto Pet sanctuary which is a US-based animal model program to treat pets with cancer using metabolic approaches such as the ketogenic diet.

Because of the different metabolic rate, they were having amazing success with dogs affected by cancer. But this could also be because a dog’s typical western diet is much unhealthier than a human Western diet in the case of modern pet food products.

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First, a new member called Pablo was interviewed on Super Human Radio because his only major treatment was a strict ketogenic diet as his tumour was inoperable when discovered. He had bravely chosen not to go for the standard of care but he had shown huge successes in slowing the growth of the most aggressive brain cancer (GBM4) by simply changing his lifestyle with metabolic therapies.

Around this time, my friend in London and I were approached by Super Human Radio to do a joint remote podcast where we would take an hour in the evenings to interview different metabolic cancer researchers. It was initially a struggle for us because the only time slot was quite late for us both being on protocols that involve a healthy circadian rhythm.

I was also still living at home with my parents so I had to steal my Dads office to be directly connected to the router in the house which was important for avoiding communication delay’s when being recorded interviewing guests.

My friend in London had also set up a very useful website called brain cancer options which we used to upload the podcasts onto. During this short stint, we managed to interview several metabolic researchers in the field of cancer research.

In the end, we were unable to continue this podcast due to my friend’s university commitments and my lack of knowledge which was just not anywhere near as advanced as his. I was also increasingly busy having to organize my fiancée and I’s house move which was getting increasingly expensive due to storage fees as the builder kept delaying the move in date.

Although we couldn’t continue the podcast, we remained fans of Super Human Radio in general because it seemed to be the only platform that was keeping the rest of the world informed about metabolic health. The main host Carl is also a great guy to listen to for both his humour, intelligence and the fact that he practices what he preaches.

To Be Continued…

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