Hacking Cancer: A Personal Odyssey With Death"
1:53PM Jul 29, 2020
low dose chemotherapy
Call someone or whatever,
are, and the results were that accounts had already
spread to a whole bunch of places. And
my favorite terminal you've got terminal cancer.
Now, means that at the moment, your cancer is not curable. Although, fortunately cancer treatment is progressing relatively quickly, and it's
yep new nutrients come in and it's improving.
I got home.
Talk to my art.
Now this time my family are in Greece.
And there's no way I'm going to tell them.
While while they're there. So you can imagine, kind of
had a couple of phone calls during that that week with my wife, I'm having to kind of say, you know, I wasn't
in. So talking about the cancer
and what a shock it is, and I'm thinking, well then actually
it's, It's going to kill me.
was nothing to prepare me for what happened next.
But at this point, you know, as a hacker what what do you do.
Right, it's all, it's all very well, kind of,
you know, playing around with shelter
shellcode and exploit some
cool hardware hacking and social engineering and bumping locks and all this kind of stuff, but what about when this is your life and when your life depends on it. So, it's time to get back in especially it's time to start asking a lot of questions, and trying to find any of exploits.
Now one thing that happened was
very good to two very good friends of mine
came to came to visit,
and may take me out for lunch.
Eating with this kind of interesting experience when you know that there's a massive tumor in your body that's blocking up your intestines. So you have to eat,
like it was a zero residue diet so like,
yeah, avoiding kind of fibrous fruit and stuff. And so my friend Eben Upton and his wife Liz out and so you've probably heard of them have been his co founder
of raspberry pi.
He came here unless came over to me out for lunch and
Evan said something really, really interesting and massively useful, which is actually one of the reasons why I'm still alive. Four years later,
he said that when the first waves of HIV
in in the 1980s.
A few people who had
access to the, the experimental treatments would get a good response and would survive. And then some of those people would sort of get through the next stage of experimental treatments. And, in fact, there are still some people live now, who weren't in those original waves of HIV in the UK in the US and other countries.
they were the ones who got
access to the new treatments and the
ones that got the good responses and went
through to the next stages of treatment.
And now, HIV is something that can be managed and treated as a chronic disease like a long term disease, with a very good prognosis very good life expectancy. And
soon it will be completely preventable and completely curable in all the cases people have already. So I started realizing that access to the new treatments is really, really important. Now what are you going to do I mean I've had no
medical knowledge I
wasn't particularly familiar with what the different bits of intestines did or the other places where the cancer spread to so spread to my liver spread to the lymph nodes. So lymph nodes, connect to your lymphatic system, which is where like your white blood cells and stuff move around and lymph nodes drain the limp back into the bloodstream was broken down.
it also spread to this thing called the parrot name that I never heard of which is like your abdominal membrane. So very quickly. I decided it was time to learn a lot about blood tests, and especially cancer blood tests.
We test these things for tumor markers,
hopefully correlate to how the campuses, is doing and particularly how viable is the cancer in terms of being able to spread and grow.
So you can measure,
like come proteins in the body that correlate to cancer tumors, and if that those levels are rising that means the cancer could be able to grow or spread.
in I hit the file sharing
websites and BitTorrent and found really quite good medical training.
started getting quite good at reading medical papers.
And I looked at the
six degrees of separation idea so that you look at the person needs to be in contact with new work backwards from that and try and find some kind of connection with that person.
I started to learn a lot in quite a short period of time.
And I also decided that
staying in the UK I was going to die.
Now I'd been living off and on in Japan for about
1010 years at that time, maybe a bit less, probably, maybe eight years, or nine years. And
quickly learned that the standard cancer care in the UK is, is poor,
and the cancer of Santa cat
standard canoscan Japan is very very very good.
So, I decided to go back to Japan.
There's practical reasons as well that I knew a lot more people in, in Tokyo, live in the west of Tokyo than New York, karma.
And so actually have more
support and it'd be much better for the kids as well, and Japan is overall a considerably more pleasant country than England to spend, you know, your last days.
One thing I discovered.
And the reason I said that, um,
the terminal cancer diagnosis,
didn't do anything to prepare me for the worst news It was later on as I had a PET scan in the UK so PET scan is a nuclear scan. You're injected with radioactive sugar so it's glucose.
And I think one of the
atoms in the glucose molecule has been replaced by a rate I think it's a radioactive fluorine
And you then,
after being injected with the sugar you lie down and have
this sugar sort of goes around you for an hour or 90 minutes, then you put in the PET scanner pet scanners Positron Emission Tomography tomography just means making a picture out of like slices and layers and positron emission. I guess the radioactive sugar is emitting the positrons which are the positive counterpart to electrons, and the scammer kind of picks up these and PET scans make this kind of image
where it shows
what bits of the body, the radioactive sugar went too quickly and because cancers have hungry for sugar.
It goes to those organs,
where the cancer is or goes to chimneys in other parts of your body where that the cancer spread to.
that kind of scan can show how well,
an organ is working because, for example, he might have it not as part of a cancer diagnosis, but just to see if there's problems with the organs, it can show how well they're functioning, because you know, your kidneys should light up on a PET scan.
yeah, you see the heart and whatever so pick PET scan was the one that showed that there was a tumor on the parents name the abdominal membrane. So this is that membrane that protects the organs of the abdomen. And that had been suspected from the CT scan the CT scan showed this like bumpy kind of texture of that membranes that
they call that irregular thickening.
And the PET scan confirmed
that the cancer spread to there.
And that men.
Instead of having something like a 25% chance to live for years, which is the perfect prognosis for cancer and be a 25% chance of being four years, when you're 36 years old and in very good health, except for the terminal counts a bit. That means you've got a pretty good chance of making it. 25% doesn't sound a lot, but healthy and young you can put up with a lot of treatment, and you're likely to be that
group getting through to the
next round and getting through to the next round and getting through to the next round,
you're likely to be an outlier.
Because that 25%.
You know the 75%, who don't make it to five years that includes people who were to six have any treatment at all, or people who the counselors spread spread to the brain and bones, very hard to
treat when exposed to abdominal membrane
five year survival rate was like
half a percent,
with no no real outliers and no no long term survivors really, regardless of
I then looked into what the life expectancy was
for stage four colon rectal cancer spread to the pet Ma'am, and realistic life expectancy is going to be five to seven months. So I wanted to be back in Tokyo. And do fun stuff with the kids before dying quite an unpleasant and painful death. Not not particularly nice I made some videos about that something on YouTube, you can hunt around for me if you go to caravan dot tech, then your forwards to like a crowdfunding page and if you click updates you'll see a bunch of videos, published on the details about the treatment I've had and it's my thing. So, I'm desperately studying oncology, in 2006, packing up my stuff back heading to Japan for, like,
and learning about cancer staging so what it means like stage one cancer when
depends on top of cancer but generally stage one cancer means the cancer is in one place between one organ. So you've got cancer in your liver, but it's just in your liver, and it's usually one one children later
stage two would be at spread like
within the liver
or whatever organ it's in
spades stage three a bit spread to local organs and mic a stage for us but the distant organs.
spending my time on bit time and file sharing
websites, I'm extremely grateful that so many fantastic medical trainings and medical books are shared around on the web, because that's one of the things that's kept me alive.
in the background. There's a
very serious issue of not having any money being like a freelance worker, doing a bit of consulting and a bit of English teaching in Japan. When you know, when you're sick there's no work, and
hence treatments expensive now in
if I'd stayed in the UK and I've got all the treatment for free, very poor quality treatment I definitely would have
year. July, 2016 So, yeah, maybe would have lasted a year or slightly under that so we've got free treatment for that sort of
plus months whatever it would have been in the UK before I died.
If you have public health insurance. You pay 30% of your medical expenses, but it's capped. But still it's a chunk of money. When you're like me with no money, and crowdfunding was, you know, the obvious solution. And,
again, like I wouldn't be alive, except
for the hacker community because my friend, Mitch altman invented TV be gone.
He promoted my crowdfunding,
one of the pioneers of podcasting bicycle mark. He
Marcus interviewed me for his various podcasts, I think, probably five or six times since the cancer diagnosis, and yet they they've promoted my stuff.
Emmanuel Goldstein has promoted. My crowdfunding as well,
and very kindly interviewed me on, on, off the hook. And, yeah, his his support for this has been incredible. He reached out more letters on off the
hook and off the wall,
yeah, it's just just been fantastic. As of people like Rob t Firefly and these people that have been. Yeah, helping out and spreading the word.
So, with the crowdfunding,
I was able to then have treatment that's not covered by insurance. So one thing I realized is that there are outliers with terminal cancer, who in very very very rare cases get cured, and in other cases at least get to the point where the cancer is treated as a chronic disease.
What sets them apart is the,
the access to new treatments and also the condition of their immune system. So I very quickly found out that one of the reasons why
people don't generally survive
cancer that spread.
Is that the treatments
are brutal. Yeah, absolutely brutal. In
particular, and very ironically,
they damage your immune system.
Now, cancer is a
very sophisticated set of diseases. It hides from your immune
system it suppresses your immune system.
But the three
classic, what are called the three pillars of cancer treatments that surgery,
the cancer, and also cutting out a big margin around it, where the cancer is probably spread too, and radiotherapy so using radiation to fry the cancer does actually, you don't really use radiation to fire the council it uses the radiation creates ions. It knocks electrons off atoms in your body and then those ions damage the cancer cells and the cancer cells die or killed by your body and chemotherapy, which is a set of
toxins that toxic
drugs that interfere with the cell cycle. So cancer. Cancer cells are dividing and that's how it grows and spreads around, and as an adult. Most of your cells are not dividing because you're fully
chemotherapy in theory is going to
cancer cells, unfortunately, you do have some cells that are always growing which are things like lining of your mouth. Skin follicles hair, hair follicles, or your skin cells the lining of your intestines and stomach.
And of course anytime you get even a little injury,
you know, bruise little cup. Anytime you get a bruise, then your body needs to grow more needs to fix that.
classic three cancer treatments they
are devastating to your immune system because a lot of immune suppression chemotherapy is so toxic that you tend to in cycles you have like a big treatment of chemotherapy, and after the rest and big dreamer chemotherapy again, and you might have six cycles or 12 cycles over three or six or 12 month period, my case I've had
chemotherapy basically all the time.
For the past four years I had a six month break after massive liver surgery.
But I found that there are other treatments
that don't damage your immune system so much even boost your immune system immunotherapy being a key one but also I found that with chemotherapy. You could have low dose chemotherapy, without the big break so the big breaks give your cancer. A chance to regroup and regrow and spread. Having a continuous low dose chemotherapy, still gonna damage your body a lot, especially heart and liver. You get this thing called fibrosis where like the tissue becomes hard and fibrous. So if
you can imagine like
muscle fibers in your heart, and damaged they get these cross links as they're trying to repair the chemotherapy damage it does it and the tissue goes hard which means if you need surgery later on, like, I had liver surgery. When the cutting through that
fibrotic tissue it
bleeds and bleeds and bleeds and bleeds and bleeds as makes surgery dangerous and difficult. So I found that yeah there are treatments that don't harm your immune system so much. And there are ways of using the classical treatments so if you have keyhole surgery that's called lap, lap laparoscopic surgery, I think, where they sort of inflate your body with carbon dioxide and. What if it's abdominal surgery, and then cut little holes in you and stick the camera in and the tools in things like a, like a super mini rational GoPro camera or whatever,
and stick some lights in there.
That's that damages your immune system less than the. The recoveries much
quicker and you can start the treatments again much quicker with chemo, getting the low dose chemotherapy also often when you're having the chemotherapy heating the organs. So I when I have chemotherapy. They stick me in this machine for about 40 minutes
and heats up the
organs. So in my case, the liver and the
abnormal membrane to be had the cancer later spread to my right lung, not fun at all. And
when you heat up the organs and blood flow increases which means the
chemotherapy agent is going to get in there more into where it's needed. And that's really important because with with big chambers. There's not good blood supply in the center of the Chima. And in the case of abdominal membrane. Those tumors are flat, and have a very poor blood supply and they tend to get a lot of very small tumors, with poor blood supplies on the abdominal membrane, so you're not going to get the chemo drug in there. So, step by step, I started learning. I started teaching myself oncology really and looking for people in a hacker community who had experiences that could share with me or could help with the crowdfunding. And I use the six degrees of separation idea.
More than anything else I use this really cheesy corny three step thing I had,
I think I had maybe seen it in the
crummy self help talk or something.
But this three step way of dealing with
a crisis or bad news so step one.
Don't worry alone. That means,
tell us tell some people choose those people carefully. but tell some people step to get the facts. So don't,
don't be concerned about things
that are unclear yet,
go and, you know, look for the real information,
i was i mean i read the same
kind of clinical papers that my doctors read. I read the same textbooks that they read. I do the same video training courses that they go on. So, get, get the real high quality information and step three make make the plan.
So having a plan, even a bad
is a lot better than no plan because it gives you breathing space, gives you time to get
So over the past four years, I've had bad news and more bad news and more bad news. And I've always taken that three step approach. And over the kind of past year. The new starts changing too and the doctors say there's no evidence of disease. Now, in my case, that means a lot less than it would for someone with other types of cancer because when the cancer spread to the abdominal membrane it's very difficult to see on the scanners because the scanners can see things of like five millimeters and bigger, when it's on the cancers on the abdominal membrane you're going to get a lot of one or two millimeter tumors spread across it and they're very flat accounts cancer scanners like CT scans MRI scans that's the magnetic resonance imaging one used to be called an MRI. But people are too scared of the word nuclear, who is an MRI scans and in the PET scans,
they will see things that like five millimeters and above, and they tend to see things
that have some bulk to them, they're not very good at seeing flat structures
in the body.
Yeah, that's where I'm at now, so.
Still, there'll be cancer, floating around my body I'm still continuing the low dose chemotherapy.
amazingly this will be an interesting from the hacker community, which, which is just incredible. I'm still getting interviewed on the podcasts, and people are still writing about my situation on social media. And that
has kind of
been yeah been one of the things that has kept me alive because first word just gives you a lot of strength to go on and you need a lot of strength when you're getting bad news and and more bad news and more bad news,
but also keeping their
you know cancer is a
marathon not a sprint. And
I've also, you know, thinking about the wider picture, not thinking about my situation.
It's very very very clear that
as hackers as a hacker community we have to
get involved in medicine.
We have to
give support the doctors and nurses and other health care workers, the support we can give them as is our expertise about using technology,
our expertise about building community,
our expertise about sharing knowledge, so much of medicine is just embarrassingly broken. So the concept of a paper, a clinical paper medical paper, it's, it's nonsense. The focus on focus on writing this static document that gets peer and peer reviewed and it's a completely binary thing. Yes No, it's published or it's not. And what we need
is something far more
Wikipedia style with
annotations and references
training, and comments from
experts all over the world,
and all that stuff
has to be online for free. In, easy to use and most importantly easy to reuse format. Often medical stuff is behind paywalls. It's often in PDF format.
particularly accessible it's not well indexed. There's no
public commenting system or
even kind of
private commenting system. We need to get involved in medicine.
One thing we desperately need to do
we need to look at medical equipment, and how
we can refactor it.
So we need to get involved in medical and hardware refactoring.
So we need to
look at how we can build medical equipment that is operationally identical. So it doesn't.
It's not going to have
to have the same kind of development and
testing as as like a new invention like it
doesn't need to be improved. But what it needs to be operationally identical, same user interface work in exactly the same way.
fraction of the cost,
smaller size lower power consumption. We know what to do, so that yeah let's get involved. Thank you so much for having 40 minutes of a miserable and dark topic, I hope it's been of use to you. If you know of anyone with cancer, or you have cancer yourself. Go to cancer tips dot XYZ. And that's a list of cancer
tips I wrote the things I wished
I had known when I got diagnosed with terminal cancer, and also common tech
that forwards to my crowdfunding
page and you can see video updates, and how I'm doing a lot of details about the treatments I've had. Yeah,
thanks a lot for listening. Thanks for being there for me
deeply appreciate, actually, emanuelle and all the hope team for putting together this incredible
game changing conference.
I hope, absolutely changed the hacker world.
us hackers were going off to looking at the, what hippies from hell we're doing that the, the Dutch hackers putting on the hat conferences and of course CCC chaos communication club. Chaos Computer Club with without events CAS computer clap camp and chaos communication Congress. Yet hope has has really raised the bar, all around the world for what hacking is and can be seen here let's get involved in the medical stuff. please get in contact with me. Carmen, on Twitter that's kar a m o n, named after the fabled land in Shadow of the Beast to the greatest game ever made. And yet, thanks for listening. Get in touch and I'll be taking questions chairs.
Information Sharing is of course, exactly the hacker ethic
that you're following here, like to thank you for sharing. Thank you for being open and we have some questions that have come in from the live audience. I think the first thing is start with is, you've learned so much this is a learning journey, obviously, as well as, you know, the journey so many other types. But what do you think is the main thing that you've done differently from other patients faced with the situation. Um,
so, I've always tried to be aware of my own biases. The real danger you have is survivor bias, which means just, you know, you hear stuff that worked for some people, and then you naturally feel you want to pursue that. What you don't hear is all the people that tried that same treatment or that same method and sadly didn't make it. So throughout the whole of this four year nightmare. I've been always trying to think, am I being bias. Another key bias is confirmation bias. So you hear of some treatment and you go out and look for it online, see what people are saying about it, and you know you are looking for positive result, and you're blinded to the negatives. Another problem is that availability bias, which means that we tend to believe what we remember. So, if something is simply understand we tend to believe it. But that has no correlation with a being true in the context of something as complex and complicated as cancer. Say, being aware of my biases is a really big one, and and you know just like a hacker just asking, as many questions as you can and asking the powerful questions, you know, always when you talking to the doctors or the nurses you say, what else should I ask you, you know, what would you do in my situation. If the clinical guidelines didn't exist that you're following what would your advice be to is looking. I don't want to say looking for the weak points but you're looking for the edge cases, you want to be an outlier. When you've got terminal cancer, you want to be an outlier.
You want to live for a long time, during the whole conference we've had several talks already that focus on essentially misinformation disinformation, and it sounds like you're in the same situation now even though there probably aren't as many bad actors, it's not like someone trying to throw the US election in 2016 or something like that. But, so maybe not quite as many bad intentions are state sponsored etc but there's an awful lot of misinformation and disinformation concerning concerning health. Did you look at what happened when you came across like a, let's say an alternative, if someone says oh you should have oxygen or you should try. You know micro doses of some poison or something like that and you discard it out of hand or did you discover that you only want to look into three possible.
So, first of all, there are plenty of bad actors, there are you know people looking for money. So that's one thing as always follow the money, you know look at the trail. Who would profit by this. There are plenty of just misguided well intentioned people who are suffering strongly from those biases I mentioned. So I always, you know, try and judge the thing on its on its own merits. But also, you know what, Carl Sagan said about if some claim is very extreme than it needs extreme evidence to back it up so if someone you know someone says they cured themselves by using cannabis oil or dog deworming tablets or whatever. You know, one tablet or one course or tablets and they were cancer free for the rest of their life, then you know you need very very big evidence to back that up. I mean, that's why we have double blind trials, double blind trial means the patient doesn't know if they're getting the real treatment or placebo, but nor do the doctors and nurses, giving that treatment that's what double blind means and that's so important because everyone is biased and everyone's hoping for a good result. But yeah, NT are bad actors and I say, some might say the pharmaceutical companies, included in that. It seems a profit driven industry right
yeah so people, people watching this talk, might be interested in watching some of those other folk talks where people took a deep dive into some of that some of that information validation backtracking. And of course view estates couldn't couldn't be higher. You gave sort of a call to action there he said you really would like to see more hackers involved with, with medical care, could you get a little more specific about that you know what can hackers do to improve cancer care and medical care.
So I think the key thing is, is get engaged in the medical care and talk to the people in on that. So, instead of saying things like, let's hack together. New scanning technology. Instead, talking to, just your family doctor or just people you come across in the medical settings and, you know, point out things like MRI scanner should not be connected to the internet. You should not be running Windows XP on hospital computers. thinking Service Pack four is going to protect you. And yeah, just, you know, making the hacker community as welcoming as possible. Invite your doctor to the local to 600 meeting. Um, you know, leave leave copies of T 600 around the hospital Wexner rooms. There's, you know there's a lot we can do in engaging with clinical staff on that. It's no it's no, it's always less effective to have that attitude of like you know we're right we've got all the answers we're going to make something and give it to the doctors or any other any other context same is true of education as well. Yeah,
so engagement is really is really the key to advocating for
engaging on it on their terms. Yeah,
yeah, thank you for that so just very quickly because we're really at the end of our time do you feel like there, you're now an expert there's no doubt about that. Even though you're not necessarily an oncologist or something like that. You're obviously an expert. Do you think there will ever be a silver bullet style jerk cancer.
I do that the pharmaceutical industry is desperate to not have curative treatments, but to have treatments treating cancers as a lifelong chronic disease, and they want a series of treatments so genetic testing, and then I'll recommend a drug. And then when that stops working for the patient when the drug resistance builds up, then genetic testing again singing human mutations different drug. That's not the way we should go for patients. We need to look at what are called cancer agnostic treatments. So things like those treatments that boost the immune system. There's a whole family of immunotherapies of which I've had some, and they work, regardless of where the cancer started. So instead of having a treatment for breast cancer human for bowel cancer treatment for lung cancer. Look at those, you know put all the resources into those few treatments that seemed to have a very wide use as cancer agnostic treatments and always look at the treatments that improve the patient's immune system or at least. Don't destroy the patient's immune system because things like chemotherapy and surgery and radiation, all of which I've had. They trashed your immune system, which is not what you want when you have cancer cells inside you.
Well, thank you so much for sharing your story we've been in conversation with Karen moon, who had a personal Odyssey with death and is still with us and as he made that hero's journey and returned to tell the tale. I appreciate you sharing with the hackers on planet earth audience and thank you and I think this is a time when we really all mean. Well,
Thank you so much. It was great.