He Got Cancer - And The Misinformation Made Him Furious | Jamie East

0:00Dr. Karan Rajan: When broadcaster Jamie East got diagnosed with cancer, the first thing he did was search for answers and make a podcast about it. What he discovered was a world of horrendous misinformation and it pissed him off. He's here to talk about his new podcast, Bad Blood, where he shares his whole cancer journey. They're taking the nugget of truth and stretching the elastic band to the moon. And it's that twisting. It's that, you know, they turn the facts inside out on themselves. I'm Dr. Curran and in this podcast I speak to the world's foremost experts in science and medicine to cut through the BS of modern health advice.

0:33Dr. Karan Rajan: Thanks as always to Loam Science for sponsoring the show, the world's first invisible fiber blend with clinical trials. Jamie East, you've been, this is all normal to you. This podcast setup is very normal to you. You've been involved. It's a good setup. Yeah, thank you. You've been involved in the podcast world for a number of years with the Daily Mail Group. you've been big in broadcasting for you know long before that as well you know doing stuff with the big brother as well yeah amazing show back in the day it was it was of its time but you know you experienced something pretty drastic and a curveball in your career far different from the podcast world when you found out you had leukemia tell me what that was like i mean mind-blowing like terrifying pretty like felt very disastrous at the time like for a very short space of time it was it was catastrophic and upsetting scary you know I've got my father of four you know I'm a breadwinner you know still kind of in the thick of it a little bit so it kind of felt like I wasn't I didn't feel ready to have cancer I wasn't I don't think I was supposed to have cancer but I presume that's what everybody who gets cancer says um and then then it turns into you know quite hopeful and you know and it changed you know it changes you and you know so I've come out i'm still in it and i've come you know i'm over a year into my diagnosis and and i think i said you know nothing changes but everything changes i mean you have a very sort of unique type of cancer it's not one that someone commonly speaks about chronic myeloid leukemia now tell me some of the symptoms you were experiencing and when you were first you know having these symptoms and undergoing it what did you think was going on honestly i didn't think i didn't have any symptoms whatsoever so i mean obviously i did but i wasn't they weren't strong enough or or present enough to make me kind of like hit the danger signs i remember we'd gone on a family holiday to miami and to do like disney and all the rest of it i haven't got young children they were they were quite old to be going to disney but i took two of them to disney anyway we went to miami we did key largo and it was a really really nice uh family holiday and i remember lying there and i couldn't work out why i felt so tired still you know yeah you know when you go on holiday everyone crashes at first right because it's just it's just the i'm on holiday so everyone kind of but then i was already you know maybe 10 days into it i was like my god i'm still really tired and disney's tiring but it's not that tiring so there was a little bit of that i was just like you know just really struggling to get out of bed a little bit but then i remember lying there and like feeling my glands and like oh that feels like is that is that a lump there is it you know you know when you feel your glands are up off you run down and i was like okay well that feels weird and i felt it in one side and i was like right i'll definitely go and get that checked out of course like two days later it had gone so i was like i'm cured and then when i got back it came back but on the other side of my throat so immediately went to google like any sane human being does and diagnosed myself with acute thyroiditis um because the symptoms seem like that a little bit of fatigue you might feel a little swelling or a little small pain on one side and occasionally it transfers to the other side of the throat i was like well how there we go done that sounds like an antibiotics job went to um the doctor in the office lucky enough to have a gp at the office described my symptoms and they were just like okay well let's just get you to an ent through the private health care at work it's like okay great yeah and that like all happened really really quickly because it's private so within maybe the following week had an appointment at an ent specialist went there that was a friday lunch time and they stuck a camera down my nose to have a look at my my vocal cords to see if there was any you know to see if my glands were up if there's anything going on did the temperature blood pressure everything seemed pretty normal and he just said he said well i can't really see anything it might just be the classic virus but while it when was the last time you had a blood test and i just like maybe i had one when i was about 49 something like that for the psa for the prostate yeah and that came back all fine and he said well should we do a blood test i was like i'd rather not i hate you know hate needles and he said well we're here you know we may as well do it as a nurse there she's great does it all the time let's just get it done we'll test you know we'll do a full full blood and i'll see you in a month i was like okay fine went in there laughing and joking with the with the nurse did the full bloods and didn't expect to hear from him for a month you know he's like come back in a month we'll have a look through and we'll see what's what we'll see how you're feeling that was on the friday and then saturday morning about 9 a.m i was on the train with my wife and youngest son going to look at universities and phone rang answered the phone and it was his assistant said oh doctor has asked to speak to you at 8 30 a.m on monday morning and immediately then i was like you knew like yeah shit has got very real um i said to my wife i was like that ain't good she's like oh no you know it's private maybe they're just you know belt and braces and i was like doctors do not phone you at half eight on a monday morning unless they really have to and so then you know pretty sleepless weekend the weight sounds like it was worse to some yeah i'd rather he just phoned up on monday morning to be honest but i guess they have to book a time and just make sure that you're going to be around to answer it so monday morning came around and and and i remember sitting there i got up like stupidly early i couldn't sleep the night before and i remember sitting there at about 25 past eight into my garden because it was the only place i could get signal and i thought right okay here's the test if he phones bang on half eight i'm in all sorts of trouble if it's 8 35 if it's a bit more it just signals a little bit of a relax kind of like oh yeah thanks you know blah blah we'll just want to get you back in bang on like literally a second you know phone rang and i was like oh okay wife was set opposite me i spoke to him and and i said hello uh i wasn't expecting to hear from you so soon he was like no me neither and i said he said look i'm really sorry to do this over the phone but your bloods are all over the shop and i think you've got leukemia wow um and it was just like i'm excuse me what you know it was a real like you know you imagine those kind of phone calls all the time and you try and picture how you'll react and time just stands still it's it's strange because i've never obviously at my side been on the receiving end of that conversation but whether it's on the phone or in person or in a letter sometimes as well if we can't get through to someone yeah i've done that hundreds of times how does it feel it sounds a bit callous and cruel the way i might say it but unfortunately there is a level of desensitization each time i do it just because i don't there is an emotion there you know first time i did it you know i was overwhelmed by doing that because you know it almost feels like you are dealing this bad hand to the patient right you're the messenger but you feel guilty some way you have to remove that because then you have to focus on how can i support the patient with providing them information support pastoral support a pathway to how can we get through this together the action plan right And I need to kind of lock in for that.

7:56It's like having to let someone go at work, right? You know, you can't make it about you. It has to be, you know, you do it quick and you do it painlessly and you get it done.

8:04Dr. Karan Rajan: When you're in medical school, and a lot of people don't realize this, unless you're going through medical school and unless you're going through the paces, we're taught frameworks on how to break bad news. And that might sound a bit weird and a bit cold handed to other people. But most people in life don't know how to break bad news. Whether it's like telling your kid off, telling your dog off or, you know, letting someone go. People aren't used to that until they have to get used to it. You know, I'm now an entrepreneur. And sometimes if I have to let someone go, still not done that. I don't know how I'll do that because I've never done that in my life.

8:41Dr. Karan Rajan: I've given broken bad news. You know, someone's died or cancer, which is arguably far worse than, you know, letting someone go. But I don't know how to do that until I've got to do it. So we're given frameworks and the frameworks are just a toolkit to you to put some flesh on the bones to, you know, make it sound a bit nicer. But it's still a bit weird the first time you do it. I remember the first time I actually broke bad news. I kept off. I told someone they had pancreatic cancer. Right. Right. And I kept offering them tea in the conversation. Very British thing. Very British. And, you know, it was just a sort of embarrassing, awkward reflex from me.

9:17Dr. Karan Rajan: and I think they understood as well I mean I was 24 when I first broke that news I'm a kid right I'm 36 now you know 12 13 years later but it didn't get easier in how I felt necessarily but how I structured it felt more humane because I'd seen what it can do to someone so I'm also interested I mean listen you're the focus here but I'm also interested on how the reactions are of the family because often they are significantly worse than the person i've found yeah you're you're spot on there because what i found weird which took me by surprise was when i told my wife like within seconds i put the phone down i was just like you know i was like holy shit sarah i've got i've got i've got fucking leukemia and it was also the same when i told my dad in fact all my family their reaction was all oh my god i'm so sorry for you and i was just like for me i was like i'm sorry for you i was like because i felt that i was burdening them with all i was making all of a sudden i was making a lot of people's lives very very bad so that felt quite weird for them to be like feeling sorry for me and like even when i phoned up work say i can't come in today i've got leukemia you know i've got to get i've got some stuff to deal with they were like oh my god i'm so sorry i'm just like why is everyone saying that to me there was which was quite a weird thing and i think that it depends what your dynamic is within your family you know i'm the guy in charge right?

10:41I'm the guy that pays the bills and goes out to work and dishes out the bollockings and and make sure that the machine is oiled, you know? So for everyone to then be worried about me felt quite weird.

10:55Dr. Karan Rajan: I want to talk about something that's quite personal to me and about some medical conditions that I suffered from. I used to have high cholesterol and fatty liver disease and that primarily stemmed from a severe lack of fibre in my diet. And on my quest for finding the perfect fiber supplement over the last few years that could help me add more fiber into my diet, I couldn't find one. That ticked all the boxes that I wanted and the high bar that I set for myself. So it built Loam Science. What I'm most proud of is not the product. I know that's great, but it's the fact that we've run two clinical trials on it, two randomized controlled trials, which is far more than the vast majority of supplements on the market will ever do.

11:30Dr. Karan Rajan: And we've got even more coming because I'm a doctor first and foremost and a scientist, And I wanted to build something that I could actually stand behind with data and not just rely on good branding. So if you want to understand what's inside Loam Science and why, the science is all on the website and the link is in the show notes. You mentioned you obviously looking up some stuff on Google when you were first having these symptoms. And just going back on the pulling the thread on some of those symptoms, unlike other cancers like, you know, colorectal cancer, gastric cancer, stomach cancer and other, you know, like a thyroid cancer for example you know a big lump might show up leukemia is an odd one i mean it's a blood cancer yeah and your symptoms are pretty vague and even you thought so yourself i mean you're going to have a tire there's so much crossover with just the stresses of normal life well this is it like you know 50 a 52 year old guy complaining of feeling a little run down is not a surprise to anybody i mean the typical symptoms of you know lymphomas and leukemias which have some overlap sometimes a bit of night sweats if it's a hot night for example lumps which come and go yeah tiredness um you know maybe some bruising that you might have noticed yeah i didn't have any bruising night sweats were interesting i did and and after when i got diagnosed and i read up on it i was like oh man yeah yeah but quite but it was also quite hot at the time you know it was the middle of summer so it's like it's very easy to kind of like put you know as we do it's like well there must be a rational explanation for this because surely i haven't got leukemia so it's like well it's hot that's why i'm sweating at night or i'm just working hard that's why i'm tired it's really difficult if you interview you know people on the street and you ask them what are some symptoms of bowel cancer chances are even though we still need much more education on some of those things people might tell you blood in your stool yeah it's like a common thing yeah but actually i think you know charities have done some of these surveys population surveys on leukemias and lymphomas and blood cancers as a whole no one has a clue people have no idea well it's because it's it's kind of there but it's not there it's in your blood right so it's like there's no there's no target right you know like you say the colon cancer or pancreatic it's that it's somewhere you can do an x-ray and you can see it you can feel it on yourself exactly so it it's it's weird because it's swimming around everywhere it's in my bone marrow it's in my stem cells it's in my blood it's like you know it's a proliferation of white blood cells it's all these things but that that you cannot physically feel it's intangible yeah yeah you know obviously you were doing a lot of you know research on google and you know maybe a contrarian view for for a doctor but i actually encourage that you know i've always encouraged my patients you know historically to look up stuff on google because you know it's a it's convenient but as long as you point them in the right direction of good things yeah and And now in the sort of advent of AI, which is becoming increasingly more powerful and invasive in our everyday lives and connected to so many things.

14:29Dr. Karan Rajan: I think there are a lot of patients now and just a lot of friends of mine who are pasting their blood results into an AI tool and analyzing that. I've got some thoughts on that. I think it's just some good and bad there. I've never thought about that. Did you ever think about using AI? No, I mean, not really. in punching your symptoms into ai and your background and then no not really i was i can i can remember very quickly i mean i remember the first google search right you know i'd never googled leukemia before because why the hell would you right right so typing in cml into google for the first time was very terrifying because i was just like because it's it's going to be the top result is like the first question that anyone who gets told they've got cancer is going to ask it's like is this going to kill me yeah so i remember typing it in hit and return and kind of you know squinting a little bit you know kind of like what am i going to see here and the first one of the first words i saw was treatable okay so i was like okay and immediately i was like it feels like there might be a bit of a plan here you know it feels like there's a feels like i've got a fight on my hands you know a little bit i felt a little bit more empowered and but then very quickly i wanted to speak to other humans about it so i used the internet but i didn't use ai because a because like at that time bloods were such a weird anomaly i've never had to look at my own bloods reports before i got you know the the consultant had to send me my bloods through all email because he said you need to go and find yourself an oncologist who's a hematologist who specializes in oncology i was just like i don't even know what those two words mean so i had to google best leukemia doctor in surrey that was my first google yeah which was k it happened five minutes after uh his phone call and it worked because she's now my consultant well came up number one dr claire reese and she's now my consultant um so the internet worked for for that i didn't put in any bloods because i just didn't know what any of it meant you know i saw white blood clamp yeah platelets you know creatinine and all of these kind of like it's like i don't know what any of this means so by putting that in i wouldn't have even known what the results coming back would have would have meant but what i did do and what i was very keen on doing was was finding other people with and their stories and their experiences with it because that's the one thing that i found really useful through all of that so things like reddit facebook groups all of these places that you would usually steer clear of i actually gravitated towards because they were honest true stories they may have not been the same because you know look when people leave bad reviews it's always because they've got other stuff going on their life right so you know a lot of the time if people are struggling with it there are underlying other there are other health issues that are underlying which they tend not to mention diabetes or you know obesity or you know and a number of factors as to why things aren't working out for them but for those early stages of leukemia there are everybody goes through the same the same first two weeks regardless of what you are you've got your bone marrow biopsies you've got your you know you've got hydroxycarbamide that you've got to go through to get your white blood count down you're going to be thinking of what tki you're going on to what is it going to be a matinib is it going to be to satin all of these like things that you're just like what the hell is all this you know it's like you know i've been a strong user of drugs in my past but none nothing like this and so it was really really useful for me to to hear other people's anecdotal stories about it you obviously you know connected with other patient groups going through it and you know somewhat maybe recognizing yourself you know in that as well but when you're looking at some of these groups you know reddit forums facebook groups podcasts online just general social media tiktok instagram youtube there's with credible information patient information there's also some pseudoscience and misinformation as well of which in cancer specifically there's a ton out there yeah yeah what sort of misinformation did you stumble upon i mean how did you know it was misinformation well i think first of all i understand why people reach for it and why people gravitate to it because it offers because all of all of this pseudoscience and all the bullshit what the one thing it offers is hope and you know it offers shortcuts it offers a shortcut it's like my god the the the the answer you're looking for is in your kitchen cupboard all of that kind of crap this supplement can reverse cancer in 90 days exactly that all of that stuff so i can i can see why in moments of desperation and at your lowest ebb you would lean towards that and also there's that there's always the undercurrent of well try it what have you got to lose what's the and actually sometimes quite a lot you know i'm a pretty well educated guy i've got you know i like to think i've got a fair amount of common sense i think you can kind of you can sniff out the bullshit quite and you know because the question i was asked myself is if this was the answer you can bet your bottom dollar that it would have been found out by now and i trust science and i trust doctors and i trust medical advice no it's not always right and mistakes are made and things are overlooked and you know we've all got horror stories of where you know a friend of a friend went to the doctors and they were told that they were fine and then all of a sudden they've got stage four breast cancer we've all heard those horror stories but they're the anomalies right you know and so if manuka honey could reverse leukemia i think people would have heard about it by now have you heard the kind of tragic story of steve jobs yeah yeah well i mean i you know i loved steve jobs i respected him i was an apple i was a huge apple fanboy for many years loved his brand loved the i loved his his ideology you know his whole thing of wearing the same outfit every day all of this he just looked cool and then you one of the cleverest most stylish richest men on the planet all of a sudden like eschewed any form of advice because he thought fruit was going to save his life but the really tragic thing was and to your point, Steve Jobs was a genius.

20:42Dr. Karan Rajan: For want of a better word, he was a genius which and his tragic story tells us the smartest person, smartest people in the world can still fall to these simple traps and mental heuristics and he had pancreatic cancer right and pancreatic cancer. For a long time as well. Yeah it's not a you know a simple cancer as cancers go on the spectrum of that but he had an operable type of pancreatic cancer. He had a neuroendocrine tumor, and an operation could have, you know, been somewhat curative in that early stage. He went on this fruitarian diet. He ignored traditional medical advice. And he went on that.

21:21Dr. Karan Rajan: And then once he realized this fruit alternative diet wasn't working, he wanted to go back to mainstream therapy. It's too late. It was inoperable. It spread everywhere to his liver. He got a liver transplant. None of that worked. And he passed away, which just tells you how, okay. you know where i land now is that if patients want to explore adjunctive therapies and alternative therapies they should not be in exchange of traditional therapies it should be in conjunction with your doctor to see if you can do that on top and if it's going to affect your primary treatment which has evidence for outcomes not instead of because then you know you could lose a rapidly closing window for treatment which steve jobs did yeah yeah it's it's crackers and you know the people that believe in that kind of stuff yeah you know are a very are a particular kind of person right and they're they're very vocal they're very noisy they're convinced that they found the path you know especially after the past six years of covid they are almost all anti-vaxxers they're almost all distrusting of government of science of you know i do believe that's a failure on the side of us as doctors to some degree to that erosion of trust yeah we have to hold our hands up politics government yeah it's at a government level as well i think and but what it does is it breeds this this this level of contempt for for for rational thought i think and the internet is one of the best things of humanity but it is also the absolute worst right and and and it does not help you know it so i think i find it quite sad what are some you know you know i always love to give people actionables in this podcast and you've been on the podcast world for a number of years now as you know a patient who's gone through this journey looking at information as someone who is very health literate especially now what are some of those kind of like tricks that people use online marketing tricks that you've seen that may work on people to make bad health information sound convincing it's again it's it's things that sound so simple yeah you know i remember i was in i was in hospital i you know one of the one of the downsides of early treatment of leukemia is that you're very susceptible your immune system is is shot to shit right because you you have to take you know the chemo just knocks every cell it doesn't just go for the bad ones it just destroys everything right because it has to get everything down on a level so your immune system's shot to shit and i found myself in in hospital for a cup for about for about a week or so maybe a week 10 days just with some random virus you know just something that would have knocked me out for two days before all of a sudden you know left me on a drip i was on iv and all the rest of it and i remember looking online and and and and there was a clip for a an episode of the diary of a ceo where a guy and they're always very convincing they're they're great auteurs and great showmen uh saying that a a young boy in america had reversed his blood cancer by going outside and getting some sunlight and it was 28 degrees outside and i was sat there on my hospital bed on a drip kind of just like and it made me so angry so but but they are always very believable things and the problem is as you well know is there is always maybe about two to five percent truth it's a molecule of truth yeah so you know of course getting fresh air and getting some vitamin d and and living a healthier lifestyle is going to aid your treatment and your recovery right but it is not going to be because you have sat outside and got some sunshine vitamin d cannot reverse blood cancer i think exactly that point there's again a cognitive bias and they use a false dichotomy here where for example we know in studies that if someone has vitamin d deficiency yeah chronically yeah that can that's been associated with an increased risk of certain cancers like direct or cancer but it doesn't mean if you have super physiological levels of vitamin d that's going to make you immune or treat your cancer yeah exactly that's the problem and that but it and it's that twisting it's that it's that kind of like you know they turn the facts inside out on themselves so that if someone like looks at and goes oh my aunt jones got that i'm going to send it to her aunt jones might go oh i'll google vitamin d deficiency cancer and a load of stuff will come back they'll go my god it's true because they won't go what is it they're saying so then it's and so then that gets shared 20 times that gets shares 50 times and you know and the comeback you get from all of these i'm going to say it in my opinion grifters is that they rely on no one ever really watching the full episode of these things right the full three and a half hours or whatever it is no one did a fact check the the 60 second clip and you know they come back and say well we fact checked it and we put it up on the screen it's like no one's watching hour two hour 20 in that video they've seen the thing on the tiktoks which they've shared so it's it's very dangerous so i think a lot of the time it's exactly that they're taking the nugget of truth and stretching that elastic band to the moon and turning it into a snack sized shareable form of content that does nothing other than promote them as an expert it's a it's a marketing piece and one thing which i particularly hate as well because I feel similar to your example about the vitamin D from that podcast is when I hear people with large followings online and even people I assumed to be credible based on their qualifications, you know, doctors and MDs and PhDs talking about how sugar feeds cancer.

27:09Dr. Karan Rajan: And again, that's based on a molecule of truth. Every cell in your body, whether it's cancerous or not, requires glucose to survive so by proxy and you know by extrapolation yes sugar does feed cancer as does every cell rely on glucose so if you deprive your body of sugar and glucose you might inhibit the growth of cancer just based on that mechanistic model but you also harm every other cell in your body exactly and it just does not make sense at all because you can't starve yourself whilst you've got cancer well it's the classic it's the classic do these press-ups to get rid of your belly fat it's like you can't target specific parts it's that molecule of truth and again it's the twisting the mutating of facts and in this example when people recommend things like fasting for cancer therapy it can help to reverse and reset your cells yeah you know it's actually harmful because an influencer may not be the smartest person in the room but they are the most well-known person in the room and who who are you going to trust you're going to trust someone that you see because humans trust other humans and because of this distrust and this general erosion of trust that we've had of doctors generally over the last 10 years especially heightened since covid in the pandemic and the mixed messaging over that we've got into this situation where influencers for better or for worse are far more trusted and there's also a lack of good scientific influencers out there at least relative to the amounts of misinformation out there so yeah you know that you've mentioned the vitamin d thing you know that's been having a huge halo effect over the last few years especially since covid also as an anti-covid therapy yeah uh the sugar there's just so many examples of that you know yeah and and it's sad you know because as you know as you said as you said before explore these additional kind of you know if you want to if you want to kind of lower your sugar intake i'm sure we could all probably benefit from that at some point but like don't go dramatic on it you know seek advice you know the number one thing is like all of these will lead all the everything just leads back to right if you're if you're undergoing cancer treatment right the best thing you can do for yourself because cancer treatment is really boring right that's the the the unspoken thing is it sounds extremely dramatic and it's pretty devastating and it's not very pleasant but it's also extremely boring the best thing that you can do for yourself is just live your best life and wherever you can get those one percent gains of being a little bit healthier it's the same boring crap that that you should be following when you didn't have cancer and that is sleep as much as you possibly can eat as healthily as much as you possibly can and go on walks as often as you can the kind of just pulling the thread on that a bit more when you listen to some of these podcasts and when they say certain things like you mentioned the vitamin d that also has the implication that someone is to blame for their cancer and because of their lifestyle and you know lifestyle has a huge role to play in chronic disease especially cancer and you could reduce your risk of many things nothing in life can make you immune to you know not getting cancer but there's a lot of things for example with leukemia no matter how optimized your lifestyle is you can still be susceptible with any cancer to that thing so almost there's this blame element of these podcasts where they kind of bestow that blame onto people well it's that maxing thing isn't it it's the brian johnson thing it's all of this like if you can fine tune your performance whether it's like you know and it's in every aspect they pull that through every aspect of life whether it's work whether it's their love lives their sex lives their spirituality all of these things it's about it's about the oh if you can if you get up at 5 a.m and journal you know you're better than the guy who's sleeping in till half seven it's the same principle right nothing i could have done would have stopped me getting leukemia of course that is just a nailed on platinum grade fact two of my chromosomes swapped it's called the philadelphia chromosomes they just swapped there is nothing there is no lifestyle choice associated with that there is no hereditary thing associated with that it is just bad luck bad luck you know a bad hand we will we will all get we will and this is the thing that the the i would say we're all gonna get one of those phone calls at some point in our life well one in two people nowadays but if it's not cancer it's something else you know you're all gonna get we will all at some point die we will all at some point get told what the thing is that is gonna kill us right you know we all have to kind of brace and that's one of the just the horrible things about life yeah we'll get a call one day about our mum or our dad or about us you know and you just have to be ready for it and sometimes there is nothing that you can do about it you can be the healthiest you can be but that isn't going to stop you getting a life-threatening illness it will just make you better prepared for it and it will give you a happier life in general you mentioned earlier some words which i thought was interesting because you know specifically in the field of cancer i think words are more powerful than in a lot of other things in life you mentioned about like hope and you mentioned about you know there was like a kind of like a plan in place and when you were first searching it you were looking for that word treatable yeah and then you mentioned okay we've got a fight on our hands the word fight yeah you know i've diagnosed many people with cancer before on scans you know physical examinations i've broken the bad news about that as well and just something maybe subconsciously or actively i've observed how the cancer patients themselves use certain words and how they respond to certain words and i found sometimes there's some people who respond really well psychologically to this fight or battle mentality but some people it can almost make them feel that there's a risk of losing you know in that analogy of a fight you're right yeah yeah and and also you know by kind of like association if you do go down that fight analogy or battle analogy like cancer is a war if you lose is that because you didn't fight hard enough and i think that could be quite no that is that it is it's horrible i you know and i don't like you know people say oh such and such unfortunately lost their battle yeah it implies what i meant when i said no it wasn't a blame on you but i'm interested in like did you find that helpful for yourself because i know some people do i'm very task oriented right you know i run departments i've owned businesses and you know you've got busy families it's very much like i'm very much like right how what do i do to get from a to b you know there's some obstacles upon the way so what i found useful was that something existed that i could follow i like following instructions i'm very it comforts me whether it's putting together furniture or whether it's you know whatever it is if there's a step-by-step instruction i find that very comforting so with leukemia and with cml that task-based thing even for the first two or three weeks i found to be very very comforting to me because it's like right here's a tried and tested thing that i have to do to get from here to here there may still be question marks at the end as to the effectiveness of that but if it's and it's like it's like a one of those books where you choose your own ending right yeah you know you get to that page and it's like do you want to go to page 22 so get to the end of like you know the hydroxycarbamides you know to get the white blood the first thing i had to do was get my white blood count down nothing else could happen until that was done right okay how do i do that well you take this hydroxycarbamide it's going to be shit no one can come near you you have to piss in a different toilet for a couple of weeks all of that kind of stuff right okay fine we can do that let's deal with that that's the thing that's right in front of us now and that was very easy to talk to my children about to talk to my wife about let's deal with this for the next two weeks and then it was kind of like right the white blood counts down i've got to have a bone marrow biopsy right okay well let's deal with that now that's that was awful you know but but it's something that needs to be happened so that you can properly diagnose the phase at which my leukemia is in because chronic myeloid leukemia is very different to acute myeloid leukemia they're part of the same journey i was very very lucky to be caught in the chronic phase rather than the aml phase because that is a whole different world oh yeah so that was another milestone and i found that to be again very comforting right now we know that what is the next thing well now i have to go in with my consultant my oncologist and we decide which tki i want to choose do you want to take the gentler one or do you want to take the nuclear one well actually i've had a bit of a shit month i'd rather take the gentler one fine now we'll see you in three months time and we want this target to be this the you know my bcr able which is the the marker that will of which measures the amount of leukemia cells in my blood it's a very it's almost a gamification of cancer right i have an app on my phone and there's a there's there's a graph and i have to hit that line by this date and it's all quite right okay all of a sudden there's methodology and order in this chaos and that i found really really comforting i think you know people are so different so you found that progress bar approach where you've got to hit certain kpis milestones that methodological approach useful for you yeah and i also feel until i didn't hit the milestone then it was yeah and i have also come across so many people which is not a small percentage of people who like to just have things buried under the carpet and just get told what to do and then you'll you know flag it as it goes on i guess you know i just wanted something that you mentioned which a lot of people may not realize you were on hydroxycarbamide and you're on the chemotherapeutic medication and you were using a different toilet for number twos as well as number ones yeah yeah a lot of people don't realize the impact cancer therapy has on their life daily things like this but also their family talk me through why it's important with certain cancer drugs like that you have to actually use a different toilet to your family well i'm you know i'm 52 i had a vasectomy a long time ago my childbearing days are way you know love my children but they are thankfully thankfully behind me uh my wife was also you know neither of us i hope are planning on having any more children but for my kids that that future is ahead of them and the toxicity of the of the of the chemo drugs is such that it's there's a real danger of it affecting their fertility um so therefore you have to be you know separate i think that's the main reason yeah other than it's you know it can make them feel ill i think one of the main reasons is and you know that's why if i'd have been 20 years younger with no children my treatment plan may have looked a lot different or you know i might have some of my sperm frozen before i went and before i went and had chemo and you know the same for females to have the eggs frozen all of this kind of but thankfully i was in a position where it's just like no it's not it make me as my tubes are tied you can you can nuke the mothers you know whatever you want to do to my balls is absolutely fine but for my kids it was a different matter so you do have a bit of segregation in the house in terms of having to keep apart preparing food toilets you know i had to never wash my hands that much since lockdown one you know and you know you're obviously well learned and experienced and you've done a lot of your own research to get yourself in a position where you're empowered with knowledge and you can go to an appointment with your doctor and have a real frank discussion.

38:42Dr. Karan Rajan: How do patients advocate for themselves, especially around cancer and making sure you understand what's going on and advocate for the right treatment? Because you had an amazing doctor, it seems, who spoke to you like a normal person, wasn't paternalistic in their approach and came to the table as equals. That's not always the case. And I can say that as doctor i've seen that and relatives of mine have said that as well what do you advocate because like you know typically when i'm talking about advocacy in chronic diseases there's a few things which i think are standard which you should do some reading first of all take someone to appointments with you because it's always helpful to have someone to even ask stuff on your behalf which you're uncomfortable take uh you know a book where you can document certain things so you don't forget write down the questions before you go so again you're not overwhelmed by the situation and ask for second opinions if need don't feel embarrassed what other things were you at i think most of those things absolutely true i think you know i wasn't learned you know i'm in a position where i've always been you know been a broadcaster been interviewing you know you interview people we just talk a lot curious and we know how to talk to people and i think you know you've got to be a little bit of a karen but you've got to know when is the right time i think preparation is the key and I think split it into two things right so there's the there's the medical side of things it's like is this the best form of treatment am I getting the right do I feel as though I'm being told enough about what is going to happen to me and then the second thing then there's the psychological side of things which is like how is this going to affect me how is this going to affect the people around me what impact is it going to have on my my life outside of being a cancer patient you know can i work can i you know mingle with people can you know all of these kind of things i recorded everything so i just you know just turn my phone on voice notes recorded every conversation because when you're being told important stuff and scary stuff you you zone out you do it's just human nature you hear one word and it throws you completely right and then you've you've you've drifted off and you know so my wife was with me every step of the way which was super important because she's bossier than I am and will kind of pressure me to ask maybe slightly more difficult questions but also I went into it with with with faith and trust in the medical profession because they're literally all I had yeah you know they're there to save my life you know this on a very basic level I can't do this on my own you know far more about I'm not that I'm not the most experienced person in the room you tell me what I need to be doing if I if I question it i feel you know always feel empowered to question like you say second opinions are always available but i think ultimately you've got to come out of there with a plan yeah you know um and ahring is not going to cure or treat you you've got to at least come out of every meeting i feel or every consultation or every phone call feeling as though you've taken at least one step forward i think is is important yeah i mean i think you're a great champion uh for not just cancer but i think you know just having patients and people just being more empowered and i'd like people to go and check out your new podcast bad blood as well where it's not only you know not just a journey of someone going through cancer and your lived experience but actually you know you said you wanted to speak to the health secretary calling out misinformation you know like the viral video about stephen bartler's diary of ceo podcast so jamie just thank you for being so transparent and honest and yeah not filtering anything thank you so much pleasure thanks so much for having me.