Transcript Disclaimer – Please note that the following transcript has been machine generated by an AI software and therefore may include errors or omissions.

Robin Daly
Hello and welcome to the second series of CancerTalk, the podcast that explores the benefits of integrative oncology. An approach that brings together standard oncology practice for the raft of lifestyle and complementary approaches in order to provide broader, more holistic care to improve quality of life and outcomes for people with cancer.

Robin Daly
I’m Robin Daly, founder of Yes to Life, the UK’s integrative cancer care charity, and one of the hosts for the podcast. Series 1 of Cancer Talk was aimed at initiating conversations about integrative oncology and bridging the gap between mainstream and integrative medicine practitioners, and the Series 1 episodes are still available from Yes to life.org.uk/podcasts and major podcast platforms.

Dr Penny Kechagioglou
Hello, I’m Dr Penny Kechagioglou, I’m an NHS clinical oncologist and co host for the podcast. And in addition to treating patients with all the regular modalities in use within healthcare, I have a passion for integrating evidence supported lifestyle and complementary medicine into patient protocols.

Dr Penny Kechagioglou
I’ve witnessed first hand the enormous benefits this can deliver to patients and their carers. So in series two of the podcast, we are planning focus conversations with healthcare professionals, working directly with people with cancer and applying integrative oncology in contemporary clinical practice with the aim of strengthening the clinical voice and evidence for integration, influencing the wider community, including academia and research, and beating the case for an integrated UK model of care.

Robin Daly
Hi, very great to see you again.

Dr Penny Kechagioglou
Hi, Robin, wonderful to see you.

Robin Daly
So we’re in a kind of interesting moment in the development of UK healthcare. It’s a moment of crisis and of course one of opportunities. Well, things have got to change. So we’re going to be speaking to somebody today who’s been focused on changing healthcare for a very long time.

Robin Daly
The decidedly outspoken Mr Chris Lewis.

Chris Lewis
Hiya Robin. Hiya Penny. Lovely to be on the show. Thank you very much for inviting me.

Dr Penny Kechagioglou
Lovely to have you Chris.

Robin Daly
Thank you. Yeah, it’s great to have you back here on Cancer Talk. And like lots of people, you and I are both here because of our personal experience with cancer and that set us both on paths of advocacy on behalf of cancer patients working to bring change.

Robin Daly
Do you want to say something about the aspects of your experience and providing the impetus for your effort all these years and what’s been getting you out of bed to engage with healthcare?

Chris Lewis
OK, so I first came across cancer back in 2007 and unfortunately, my mum had breast cancer and, and and my dad died of bowel cancer. But it’s something that until it sort of comes to your own door, you don’t really appreciate what tidal wave it it will bring to you.

Chris Lewis
And when I was going through my stuff, I mean, I wasn’t given long to live, as you know, I was given six months to live back in those days, 2007, right? And obviously I got through that stage, but I’m a business guy and I, I looked at cancer as a business and I, I thought, well, you know, what have we got to do here?

Chris Lewis
We, we’ve got to not only solve it, but we’ve actually got to help people that have got cancer. And, and I could, if I’m honest with you, Robin and Penny, I, I couldn’t believe what I was seeing. It was like everyone was in their own little silo doing their own little thing.

Chris Lewis
It was absolutely appalling and that they back in those days, they thought Cancer Support was filling your rucksack up with with a load of pamphlets telling you about the flipping disease you’d already got.

Chris Lewis
You know, I thought it was absolutely atrocious. No practical help for people paying the bills and you know, trying to get a job and all of those sort of things. It was just, it was just awful. And I thought, well, if I’m not going to be able to go back to work, I’ve actually got a project on here and and I’m going to just stick with it and do something about it.

Chris Lewis
I’m going to try and change and improve things on the landscape.

Dr Penny Kechagioglou
So you saw it as a as a business, I really like that. So you saw it really personal. It was it became very personal to you to try.

Chris Lewis
It became personal. Yeah, exactly. Penny to, to be honest. Look, Healthcare is healthcare, but at the end of the day, it’s a business. Everything’s a business, you’ve got to work efficiently to do it.

Chris Lewis
And, and even still today, you know, most hospitals, you can’t get the phone answered, you know, you can’t get an appointment letter to, to have your appointment on time. So just even the basics of that sort of stuff was so poor.

Chris Lewis
I was honestly shocked that the NHS, you know, it’s, it’s our country’s biggest employer, but they couldn’t even seem to do the basics right. I, I, I was really appalled And, and that’s, you know, this is just basic business.

Chris Lewis
I’m not talking about personally finding the cure for cancer. I’m talking about personally when I go to a hospital, I, I want to be greeted properly as a, as a customer, you know, I am a customer of the service and actually the service was seemed to me to be working more for the people providing it than for the people that the customers of the service.

Dr Penny Kechagioglou
So Chris, have things moved on since your first initial experiences? I mean, here we are in an era where we are talking about prevention, we are talking about elevating patient voice. I mean, from your patient advocacy experience over the years, has anything shifted?

Chris Lewis
Yeah, I mean, a lot’s improved now, Penny. I I couldn’t say it hasn’t. It has improved. You know, we’ve, we’re now looking at the practicalities of living with cancer. 17 years ago, it was more of a problem to survive cancer.

Chris Lewis
Now we do have more people living with cancer. So you know that the powers that be in the cancer world tell me that’s a great success and, and I’m part of the success, but I still have to wonder whether we actually thrive or survive with cancer.

Chris Lewis
You know, yes, yes, things have improved. You know, we’ve got support centres and stuff like that. But if I look at the bigger picture still, it’s very hard to get work if you’re a cancer patient. It’s very, very hard.

Chris Lewis
You know, you put something like cancer on your CV and pretty much that goes in the bin unless you’ve got some sort of sympathetic employer. And I know for a fact that that applies right across cancer.

Chris Lewis
Cancer organisations themselves don’t even like stuff with cancer. So, you know, the big, the bigger picture is there’s still a long way to go. And if I’m honest, I mean, I’m a, I’m, I’m a great technology person and, and I, I’m blessed.

Chris Lewis
I think that all of us here, I mean, we use technology, right? That, that we are in the age of technology. And but, but I’m frustrated myself because some of the progress we’ve made in healthcare isn’t as good as it should have been or it should be because we’ve got this wonderful technology at our service.

Chris Lewis
You know, some of the some of the progress that we have made has been down to purely the technology, not the way we’ve used it and not the way we think about how we should be using it.

Robin Daly
So not maximising on the the potential is there.

Chris Lewis
Not at all. Not at all. There’s more, it seems. More a fear. Robin, you know I smell fear when I talk about cancer and change. I smell fear from the NHS I smell fear. You know, I go to these big conferences like like you do and I see unbelievable technology around the world, but I smell fear from the NHS.

Robin Daly
Interesting. So they rolled out Lord Darzi recently to see what he made of the whole thing. You feel somewhat vindicated in some of the complaints you’ve made recently in his report.

Chris Lewis
Yeah, I do. But I wasn’t looking for vindication. I know what I see. I don’t make things up. I don’t, I don’t read the papers and spout what I see there or I don’t watch it on TV. I’m I only ever speak about what I see personally.

Chris Lewis
And I have a unique experience. I, you know, I’m sitting in the cancer waiting room. I’m having treatment and I’m talking to people and I’m talking to doctors and I’m talking to surgeons around the world, you know, You know, my stuff’s not made-up.

Chris Lewis
My stuff is what I see and how I judge. You know what people tell me. So Lord Darzi, Yeah, lovely. Lovely to see what he writes, but that’s been happening for far too long.

Robin Daly
Yeah, absolutely. He’s, generally speaking describing a lot of things that were that way 10 years earlier, and they haven’t changed. So particularly important things like early diagnosis, I mean, that was flagged up long time ago as being a major issue, and it still is.

Robin Daly
But do you think that nonetheless that he is more likely to get heard now than he would have been 10 years ago?

Chris Lewis
Yes, I think so. But hearing and doing two different things. You know, we can hear these guys and you know, we hear about cancer. We hear about it quite frequently. And now we’ve got the famous guy and he’s that famous.

Chris Lewis
I can’t remember his name. The Olympian man, he’s just got cancer. He’s all over the papers now and we’re talking about him. You know, he’s he’s on every TV programme that you care to name. And you know, it’s, it’s wonderful that, that he’s putting that thing out about cancer and he’s got terminal cancer.

Chris Lewis
But actually, you know, these people come and go with, with due respect to all of them and nothing really changes. You know, we’ve had MPs die of cancer, some very, very sad cases. Famous people come and go, come and go, come and go, you know, and I, and I, my fear is that this report will do the same.

Dr Penny Kechagioglou
Statistics are striking and they Chris, I mean, one in two, one in three of us will get cancer. And, and it’s real and, and people, as you say, they, they don’t get a good experience. It’s not just about the curious about the experience and it’s about how you live afterwards, right.

Dr Penny Kechagioglou
So whose business is this, Chris? Who is who is responsible to fix this?

Chris Lewis
I’ve got one answer for that penny, and that’s us.

Chris Lewis
Quite honestly, no politician will fix this. Politicians not interested in it. They’re all short termist entertainers now. They all want to just make a career for themselves by being famous, by being in the public eye.

Chris Lewis
No politicians long term. I don’t believe in lobbying quite honestly. I see charities waste millions of pounds, millions lobbying politicians who are not going to be there for 5 minutes. Quite honestly, it’s only the people.

Chris Lewis
And I’m honestly shocked. This cancer is a plague. It’s a modern day plague. We talk about COVID and we saw all the terrible things about COVID, but the death numbers through cancer are so much more and getting worse and worse and worse.

Chris Lewis
But still the general public do not move anything. Nothing will move unless the general public wanted to. And currently all I see is, you know, Trump and Love Island and all this other stuff. People worried about their fuel bills, but they’re not worried about the health.

Chris Lewis
Cancer is on everybody’s doorstep. And I’m truly shocked. I’m truly shocked that the nation accepts this. In the, in the 17 years I’ve been doing it, it’s getting worse and worse. And, and you know, obviously you see the same you, you know, in your positions, you, you both see the same as me.

Chris Lewis
This is coming to every household and it’s lapping at the door, right? And I don’t see anyone getting excited about it. And it’s global. It’s not just UK either.

Robin Daly
Yeah, no, I completely with you. You know, I’m thinking back over my experience and the the kind of complacency in relation to the cancer statistics I can completely concur with. I do feel that something that’s happened recently is I’m beginning to come across young people who are aware of the fact that they could be in the fiery line.

Robin Daly
And this is a first. It’s never was the case before and nobody thought about it until they had to. And so that’s a good thing because they’re beginning to take steps to try and prevent themselves being in that firing line, which is what we need the the whole nation to do.

Robin Daly
Ultimately that’s the answer, isn’t it? It’s not the cure. It’s actually finding out why we’re getting cancer and not doing it. And that’s very heartening to see. It’s not a landslide, but it’s a beginning at least.

Robin Daly
And I think that’s the the door to be pushing at in a way. We want the change is the younger people who are beginning to realise that you know, it could be them and very likely to be them in fact.

Dr Penny Kechagioglou
And and the, the opportunities, Chris, you mentioned at the beginning, I mean, we are seeing a shift towards or at least talking about prevention and talking about how we’re going to reduce those risk factors that cause cancer.

Dr Penny Kechagioglou
Where do we start from? How do we make that change? And the clinician voice, the patient voice is key here because you see and I see what’s happening and we, we don’t have the power to change one single person of us, but we collectively can.

Dr Penny Kechagioglou
Where do we start from?

Chris Lewis
And that’s a great point of view. Well, I again, I’ll come back to my business thing, Penny, right, I’ll come back to my business thing. So we’ve, we’ve been working on cancer inverted commas for so many years, hundreds of years probably, right?

Chris Lewis
We’ve been, we’ve been trying to look for a cure for cancer. OK, yeah, here we still are. And whilst we’re still looking, the one in threes moved to one in two as you, as you pointed out earlier on. Right now, to me, that’s a complete failure of what we’ve been doing in the past.

Chris Lewis
And it’s it’s staring me in the face. You know, if it, this is a business and he ultimately is a business because it takes money, it takes resource, right? And at the end of the day, you have to look at that or we all have to look at that and go, well, hold on, that’s some of my money, right?

Chris Lewis
Where is it going? You ask Cancer Research, where are we? And they’ll say, oh, it’s a difficult subject. You know, it’s different. We’ve done this, we’ve done that. More people are living with cancer.

Chris Lewis
Actually, that’s not the answer. This is purely business. This money is wasted. And what we’ve done with it so far, because it’s absolutely smacking us in the face that we need to find out what’s causing it, not trying to put the fire out right.

Chris Lewis
The fires are getting hotter and hotter and hotter, and all we’re still looking at is how to put more water on it. Let’s be honest, drug companies, they have their own agendas. And in the world now if everything, if we look at everything in a purely financial way, which most people seem to be doing that right.

Chris Lewis
I’m not talking about you and me. I’m talking about the powers that be, OK? The powers that be are finishing off the planet, OK? Because it’s all about money. So their shareholders have to be returned money, right?

Chris Lewis
And that applies in healthcare, pharmaceutical. If we continue that way, all we’re ever going to do is having a world full of people that are relying on drugs, and we’re never going to break that cycle.

Chris Lewis
So until somebody, most of the powers that be are involved in pharmaceutical. You take Bill Gates as an example, right? That clever guy found that, yes, he sorted out computers, but where is he now? Where does he spend most of his time in healthcare?

Chris Lewis
And that’s not because he’s love of the world, it’s because he could influence people. So until people really wake up to what’s going on here, we’re being driven by money, pharmaceuticals and the likes.

Chris Lewis
And no one wants to stick out from that process. Honestly, nobody wants to stand up to it, Penny. Apart from you, of course.

Robin Daly
Look, we’ve mentioned several times the patient voice here and the the important thing about the patient voice is bearer gender. Of course, it’s completely different to making money. They actually want to get, well, they don’t want to get cancer.

Robin Daly
And so you’ve got a a driving force with a completely different objective and actually the right objective. So that’s in a way prices, as you say, the onus is actually on us to drive the agenda here in some way.

Robin Daly
And we have actually got an opportunity at the moment, interestingly enough. I mean, whether we’ll see what it comes to. But our new government has said, Oh yeah, tell us how we should improve things in the NHS, which you know, nobody there.

Robin Daly
I’ve never been asked before. So I’m quite pleased to be asked. I am taking it with a pinch of salt as to whether it’d make any difference, but I certainly want to respond to that. It’s an interesting moment and I think it’s it has come from a moment of crisis where they’re saying, well look, everybody can see that the NHS is not really working now and the way it’s heading is complete a disaster.

Robin Daly
It cannot go on trying to feed drugs and things to people who are getting cancer just looking at cancer alone, let alone everything else. So we know we’ve got to change direction and the words prevention, you know, things like this are coming in the door seriously for the first time, you know, moving the agenda towards things like prevention.

Robin Daly
And of course healthcare doesn’t as it stands doesn’t particularly know anything about prevention, but it’s not because there aren’t things known, but it they’re not within outstanding healthcare, which is a response to illness.

Robin Daly
So I think it’s an interesting moment for all sorts of voices, including the public, to be heard. Maybe. Because there’s expertise in prevention actually exists now outside of healthcare. So anyway, I’m interested.

Robin Daly
I mean, you know, we as an organization, we’re very keen to be involved in any discussion about the direction of the NHS. As you know, you’re one of our * supporters of our charter for oncology. She brought out in order to give some direction for the healthcare the way that we would like to see healthcare go on behalf of patients.

Robin Daly
We’re a patient voice as an organization. So big thank you to you for being a champion of our charter. I mean, do you want to say a little bit about the kind of things that the the the Charter is trying to bring forward into the attention of both the public and the media and healthcare?

Chris Lewis
Well, I’d like to think that that the things, the subjects on the charter will, will actually be sewn into some of the stuff that that will be improved or supposedly improved in, in the NHS. Robin, as you know, I’m, I’m a lover of the charter.

Chris Lewis
I think most of those things should have been done before anyway, but it’s it’s great to see them written down. Personally speaking, I’m I’m not a lover of what’s happened here and I’m not convinced it’s not PR by the government to ask everyone by the voice.

Chris Lewis
Personally, I’m I’m not involved in it on a personal basis. It’s something I shunned when I had the opportunity because I’ve been talking out for so many years now and so far I don’t, I don’t know, I don’t think I’ve changed anything in the NHS at all.

Chris Lewis
So this is not the opportunity for me personally when everyone else is shouting out to, I’m not convinced about the reason for it. To me what I see unfortunately is we hear in the budget, you know, there’s more and more billions going into the NHS, but I don’t really know how they can do that without change.

Chris Lewis
And change is not something that’s going to happen just because the government has changed. So I fear, personally speaking, that it, it, it might just be pouring more money into the black hole, if I’m honest.

Chris Lewis
That’s my personal view. I’m not getting involved in more chats about the NHS with politicians. I I’ve had enough of it, personally speaking.

Dr Penny Kechagioglou
If we talk about the chart, I’ll talk a bit about the charter if I may. And I think, you know, we, we’ve obviously written about it. We we reflected about it. We are, we are speaking loud about it’s principles, right?

Dr Penny Kechagioglou
And one of them is hope. And I think there’s a lot of, how can I describe it, maybe some cynicism even from clinicians in the, in the sense that is anything going to change really. Now, however, you know, maybe it is an opportunity and maybe we should not miss that opportunity.

Dr Penny Kechagioglou
But in order for something to change, I think clinicians, patients, they need to sit on the right table. That’s what I think. And I don’t think they have been sitting on that right table for quite a long time.

Dr Penny Kechagioglou
And that’s where the voice was not heard. So if anything we need to do, I think, is to bring those voices here like we do today, right? And bring clinicians, bring patient advocates, bring patients themselves and openly converse and say what’s not working.

Dr Penny Kechagioglou
And there are things that are done well. We know they are, you know, survival is better. So we have done something well, but how we make it even better and how do we actually stop that from happening?

Dr Penny Kechagioglou
And there are things we could do and there are things we, you know, without putting any money into it. And that’s simple living a healthy life, which is probably an inexpensive way to do it if we know how to do it.

Dr Penny Kechagioglou
But we need to speak about it and we need to bring the right people on the table with the right measures, more probably the right policies that do not exist out there.

Chris Lewis
Yeah, I, I couldn’t agree with you more, Penny. I, I mean, I looked so as I mentioned to you off off camera, you know, I’ve had a couple of weeks to sit and analyse my personal work and I look back at a video that I did and I was on BBC News and it was in 2019 and it was on the national news.

Chris Lewis
It was on news at six and News at 10 BBC OK, so it was prime time. And in that we just started my charity SIM Pal, we just started and, and the BBC like what we were doing. So they, they did a little feature of somebody that we’d helped and, and the issue of it was cancer poverty.

Chris Lewis
That was the, that was the, it was a 5 minute piece and it was a lovely piece. And it was in 2019 talking about cancer poverty. And quite frankly. So that’s five years ago now, right? And the whole thing is a whole lot worse than it ever was then.

Chris Lewis
And I thought to myself, well, you know, I got on national news right to say this. And actually nothing has has occurred since. It’s only got worse. So from a personal perspective, I just wanted to get rid of that frustration.

Chris Lewis
So I’ve gone now. Why? Why is it still exciting? Penny, tell me that again. I come back to my business angle. You know, we are customers of the of the NHS, the biggest employer in the country. We are customers of that.

Chris Lewis
Now, I don’t know any successful business that does not engage with its customer. And I don’t understand why it’s still such a big thing after my personal 17 years in cancer that we’re still talking about getting patients around the table.

Chris Lewis
17 years, we haven’t even got that right. And you’re 100% right. Patients are never where where the power is. They might be on a table with tea and biscuits, but they’re never where the decisions are made, you know, and I know mostly it’s a tick box, right?

Robin Daly
Yeah, so there, you’re right, that’s where the rubber hits the road that basically there there’s been, there has been something that has looked like patient engagement over the last decade or more, but it hasn’t made any difference.

Robin Daly
So those voices that need to be part of the discussion at the highest level aren’t getting hurt. And one of the things that’s very frustrating from to me is that I realised that if you look at the NHS internally, it has the most horrendous problems.

Robin Daly
Being employed by the NHS is terrible. It’s really a grim thing that people have to be virtually Saints, a lot of them to do it. And it’s a very harsh environment. And the the appearance is that patients are coming on demanding stuff from the outside, which is going to make it more difficult.

Robin Daly
But to me, that’s anything but the case that the things that the patients want to improve in healthcare will improve it for the people who work in it. That patient charter that we’ve written that’s embraced the environment will improve immensely for the employees, for the clinicians, all the staff.

Robin Daly
And that’s something that just hasn’t been taken on board is that it’s not about us and them, you know, the employees and the patients. It’s about people. It’s about, you know, a good environment for people to be ill in and for people to work in all of it at one time. It’s a holistic view.

Chris Lewis
I totally agree with you, Robin. You know, I’ve, I’ve run businesses, OK, not, not the NHS size, but I’ve run, I’ve run businesses, OK. And I want my people come and work for me to be happy. I want them to reflect what the business is right.

Chris Lewis
And without doubt the NHS is reflected by seeing the staff. You know that the NHS has been running on fumes. It’s been running on fumes of goodwill of those incredible people that have been whipped and whipped and whipped and whipped for so long.

Chris Lewis
You know, I can’t believe it in, in the NHS, we have what’s termed whistleblower right now. To me, if I’m in business, that’s not a whistleblower. That’s somebody who wants me to improve my business by telling me what’s going on.

Robin Daly
Right, good member of staff.

Chris Lewis
Chris, this is happening. Oh, yeah, OK, we better have a look into that to improve things for everyone. Why is it happening like that? But no, you’re called a whistleblower. And if you continue to talk out, you’re going to get the sack right. This is no way to run a business.

Dr Penny Kechagioglou
In fact, if you if you, if you run your business well, you don’t need whistleblowers there wouldn’t exist, right?

Chris Lewis
100% whistleblowers. Whistleblower who? Who put that term there? These are people that they want to try and improve where they’re working. Why are they called whistleblower?

Dr Penny Kechagioglou
But I think, Chris, that your your frustration is everyone’s frustration. And I think at this point of time, I think the frustration has reached a level that change is only inevitable. So, you know, I hear you.

Dr Penny Kechagioglou
And I think Robin would agree that there’s so much of that feeling around that things will inevitably change, but that change needs to happen quickly, you know, and get the get the NHS and where it needs to be to look after people and look after people truly in the whole sense.

Robin Daly
Yeah, I think Penny is exactly right. If we can get some momentum for change, that will bring with it optimism and hope both for patients and for the staff. I think it’s essential that they actually start moving in a better direction quickly.

Dr Penny Kechagioglou
And, and you’re right, the 2GO together, you know, patients and staff, you know, you look one or hold you look the other, that’s for sure. They go together and that’s what the oncology charter talks about, isn’t it?

Dr Penny Kechagioglou
Patients, admissions staff and the healthcare they’re.

Robin Daly
Working together. All right. Well, look, that’s about it, the time. Great to talk, Chris. I think the patient voice needing to be heard seems to be the single message that’s coming out through here. It’s what you’ve been trying to do all these years and you are actually saying they haven’t been listening.

Robin Daly
So if something’s going to happen now, it’ll be because of that they start listening. And so let’s hope that is what’s going to come back now.

Chris Lewis
Indeed, thank you and and Penny and Robin, you know, I love, you know, I love what you guys do and I’ll be still supporting you in every way that I possibly can because, you know, I really love it. We need more voices.

Chris Lewis
There will be change. I’m not going quiet on cancer, I’m just taking a little bit of a rest and going where I can get some satisfaction, which is not currently in cancer world.

Robin Daly
Fair enough. OK. Well, big thank you.

Dr Penny Kechagioglou
Chris, great talking to you, Chris.

Chris Lewis
Thank you guys. Lovely talking to you.

Dr Penny Kechagioglou
Take care.

Chris Lewis
Thank you. Bye.

Robin Daly
So for the remainder of the podcast, we’re going to be speaking to Versha Carter. Versha is currently undergoing treatment for cancer, but she also happens to be the person behind the immensely successful Integrative and Personalized Medicine show.

Robin Daly
This means that she knows a great deal about what’s possible beyond conventional care and the potential for integrating other modalities into conventional protocols. So Virsha Big welcome to podcast.

Versha Carter
Thanks for having me, Robin.

Dr Penny Kechagioglou
Welcome Versha. Nice to see you.

Versha Carter
Yes, you too, Penny.

Robin Daly
So, yeah, thanks very much for joining us to share some of your story today. I wonder if you start out by telling us about your personal aims for your cancer care and how those are being met by your oncology team.

Versha Carter
I guess I best describe how I’m approaching my cancer as the marginal gains theory, which I read about with the Olympic cycle team that sort of chopped everything. Little details like sleeping on the right mattresses when they went to different hotels, et cetera, and all these little things added up to them successfully winning the gold medal, I think.

Versha Carter
And so I kind of visualize that a lot with the way I’m approaching my cancer care, that I’m doing lots of different things that I think will help fill up my glass and successfully enable me to, you know, cure my cancer.

Versha Carter
And so the, the NHS is obviously the NHS oncologist is obviously a key part of that. But I’m, I see that as really only one part. And I’m doing lots of other things around that which has really made me feel quite self empowered.

Versha Carter
Yeah, that’s how I would best describe it.

Robin Daly
OK. And I was just interested to hear how your oncology team at NHS response to taking such a proactive relationship to your treatment.

Versha Carter
I have had, I’ve had two experiences because I was initially under the care of a lung specialist for the first month they thought I might have lung cancer and then they found out I have non Hodgkin’s lymphoma.

Versha Carter
So I have had two different experiences and I was pleasantly surprised with the first oncologists who didn’t really question what I was doing. But what he didn’t do was we didn’t spend anytime talking about whether there was validity to it or not.

Versha Carter
He just seemed very accepting that I was choosing to do other things because I because I had knowledge already. From my experience of working with you and Penny and the integrated medicine world, I was obviously in a really blessed position where I was able to move really fast.

Versha Carter
So even in that first month, even before final diagnosis, I was already doing things and I never felt that there was any judgment. I felt like he was really happy for me to get on and do what I had to do while he was going to do what he was doing.

Versha Carter
When I moved to the other department, the first meeting that I had with the oncologist, we spent the majority of our meeting talking about the science behind integrated medicine and how he said that there wasn’t science behind a lot of the things that I was choosing to do, that they weren’t NHS approved, they hadn’t gone through NICE guidelines.

Versha Carter
And I found myself saying to him that, well, you know, I feel like the NHS is a very big bureaucratic system and that the cancer and care and integrative medicine worlds move quite rapidly. And potentially, I don’t think maybe you understand about all the science and I’m not sure you’re exposed to it.

Versha Carter
And what that just created is that, you know, what I also knew by this point is that having a supportive person on my team in within the NHS and not just within the NHS, I feel that everyone that I work with on my cancer journey needs to be kind of on that same page with me.

Versha Carter
We need to be a team working together. So that here I was on my very first meeting where it was we were basically having a really antagonistic conversation and I walked out that meeting 100% convinced that I was going to go and get another oncologist that was not going to be who I was going to deal with.

Versha Carter
As it turns out, I have stayed with them but but it’s continues to be a bit stressful.

Dr Penny Kechagioglou
So obviously versa, you were in a previous position to have the knowledge of integrative medicine because you have been, you know, not just organising event, but trained yourself and speaking, having a network of clinicians working in that space.

Dr Penny Kechagioglou
And it has been your personal interest for quite some time, hasn’t it? I mean, there are other patients out there and you’ve got the confidence to say, you know, I’m doing this, this and this because you’ve read about it.

Dr Penny Kechagioglou
But there are other patients I guess who they’re just starting to explore those areas of integrative medicine and, and that I suggest I, I, I would imagine it would be harder for them to, I guess, enter that conversation, isn’t it?

Dr Penny Kechagioglou
And have that argument with the oncology team, would you think?

Versha Carter
Definitely. I mean, I think I’m quite a confident person. So I often think that if you were sort of less confident or maybe a little bit shyer or just you, that would be an extra burden. And then sometimes even despite feeling that I’m quite confident, even despite knowing that there’s so much science behind this.

Versha Carter
I also really understand that that antagonistic I, I need to get what I want out of like I, I want the relationship to be positive with the NHS because it doesn’t actually do me any favours walking out of that meeting feeling stressed, even if it’s just a little bit of anger.

Versha Carter
That’s just not that everything I’m reading about how you should support your cancer care is about trying to be much more positive about everything. So I even in my meetings with them, I’ll be like, should I bother trying to explain to them what I’m doing or should I just shut down and and not tell them what I’m doing?

Versha Carter
And it’s sort of this battle within myself. So it has, I, I have found it stressful and I’ve, I’m in the department that I’m in. I don’t just have the same oncologist. I have a team of oncologists. So I’m actually not building a relationship necessarily with one oncologist.

Versha Carter
I’ve had three oncologists so far and I’ve probably had four meetings. So it’s, I haven’t had, you know, I’m having a different person quite regularly, but in that department, they are all very dismissive of any other items, even to the point where I went to one appointment once where I was waiting for my results, the results hadn’t come in.

Versha Carter
So it was a little bit frustrating that they hadn’t thought to cancel the appointment, which I thought would have been useful for them because they could have used their time better. But anyway, we were there.

Versha Carter
We were in that meeting. I had a blood test result as I arrived. And so at least I was like, well, at least I’ve had my blood test results. It’d be great to get those results. Because then I couldn’t see whether any of the things that I’m doing on an independent basis are helping my blood levels and whether my nutrition, all the lifestyle things that I’m doing, whether they’re kind of helping me in terms of my overall health.

Versha Carter
And we spent 20 minutes talking about why it would be useful for me to have those tests. So initially I was told I didn’t need those tests results, they were fine. And I said, Oh no, no, I I understand they’re fine.

Versha Carter
They’ve been fine every time. But I’m just, I’m just interested to, if I could have them because I’d like to keep them for my own records. And literally the conversation was that as an expert, you don’t need to, you don’t need to question me.

Versha Carter
I can reassure you that these blood tests are absolutely perfect. And so that went on in such even we went backwards and forwards and in the end I literally just stopped him and I said, OK, let’s let’s put it this way.

Versha Carter
You’ve got 2 patients in front of you, one of them who is in optimum health and one of them who is generally they’ve, they’ve both got cancer, but one is generally quite healthy and the other one is not healthy.

Versha Carter
Who is going to respond the best to the treatment plan that you were just about to propose? And he said, OK, the one with the optimum health. And I said, OK, perfect. So I just want my blood test results so that I have some form of measurement to measure my optimum health.

Versha Carter
I’m trying to build on my immune system so that I can just be as healthy as possible so that I can cope with the medicine that you’re about to suggest for me, so that I can have my immune system fighting against the cancer.

Versha Carter
But it took me 20 minutes to get them. I did get them in the end, and I could have gotten them through Freedom of Information if it had come to it. But it was just, it was again, frustrating.

Robin Daly
Yeah, you shouldn’t need to argue about that kind of thing really in any way. So yeah, a lot of frustration in that. So I get what you say about it not being helpful to have those kind of conversations, really.

Robin Daly
Maybe we just do a little bit of blue sky here. We’re at this moment with Change NHS where we’re being asked for our ideas about the health service and what it needs in order to be more successful. And maybe you like to describe how you would like your oncology appointment to go optimally?

Versha Carter
I’ve been thinking about this recently. What When I walk into my appointments, I start off by asking if I can video the meeting with them and because I want to then take that information, digest it again later in case they give me anything that is a little bit overwhelming.

Versha Carter
I don’t understand. But also, because I have an extended team that I’m working with, it’s quite useful if I can just let my nutritionist hear what the oncologist saying rather than the nutritionist hearing my interpretation of what the oncologist said, which is where I feel I could, you know, get confused with the messaging.

Versha Carter
And because my nutritionist works very extensively with cancer patients, I just feel like if I don’t have to have that kind of disconnect, it will just be more effective. But in every case, there has been tension with that.

Versha Carter
What I would love is that I would just be able to go in and say, I hope you don’t mind, but I’d like to record this meeting because I would like to share this with my nutritionist and some of my other team members that I’m working with just so that they’re really clear about what you think.

Versha Carter
So I don’t misinterpret what you’re saying. And I would love it if they would don’t say absolutely. I, I would, it’s be great if you, they can hear exactly what I’m suggesting so that then they can build on that and that doesn’t happen at all.

Versha Carter
I and I would like them to be and where they don’t know about information in my experiences, except for with the first oncologist that was a long oncologist, they have these three other oncologists have dismissed my views about what I’m doing and about my choices.

Versha Carter
And we’ve had had lots of conversations. So I’ve just had my, I had a meeting yesterday with the oncologist. I’ve had great results from a PET scan. I genuinely believe that the results of what has happened yesterday is I chose not to have chemotherapy, not because I’m against chemotherapy, but for my current situation, I think maybe now isn’t the right time for me to have chemotherapy.

Versha Carter
And so I’ve only had immunotherapy and I had one oncologist tell me that it wasn’t going to work at all. Another oncologist say, say to me it might work, but then added that you’ll end up coming back for chemo.

Versha Carter
So even though he said it might work, he kind of added in that it probably wouldn’t. And it has worked really well. I mean, they, they described it as being a significant reduction in the tumor. So I’m in that meeting feeling really positive.

Versha Carter
And I’m just saying that I’m contemplating there, Sir Jane saying that potentially your next step could be a bit of a wait and see. And I said, yeah, well, maybe what I’ll do is I could continue on doing some of the other things that I’ve been doing outside of this.

Versha Carter
We could then meet back. And his comment was, but the reason why you are where you are is because of the immunotherapy. It’s, and I just said to him, well, there’s lots of evidence to show that an integrative approach helps and that, you know, we’ll never really know why it is that I’ve had good success.

Versha Carter
But again, they’re being dismissive. And it would just, wouldn’t it be wonderful if they would just be open to and encouraging of even if they don’t believe in what I’m doing, surely they understand that if the patient feels like they’re doing something that is to their value, that they realise, do they understand the connection between mind over matter and the fact that if I think what I’m doing is helping me, that just my body is just going to be in a better position for healing.

Versha Carter
You know, it’s just very one sided. It seems to be that unless I’m willing to pass over full responsibility to them and not participate at all in this conversation, that I feel like I’m really awkward patient.

Versha Carter
But I’ve accepted that I’m an awkward patient because I’m ultimately know that it’s my right to make the decisions that I need. And I would love them to just be more active partners, but we’re not. We’re not working together really.

Dr Penny Kechagioglou
I’ll take that a step further. I mean, it would be nicer if you wouldn’t have to actually record that your clinical team would communicate with your nutritionist.

Versha Carter
Oh, that would be amazing. Yes, of course.

Dr Penny Kechagioglou
In a truly integrative fashion, like a truly multidisciplinary team. How do you feel about that?

Versha Carter
Well, that would be amazing. But the other point that I should make, that’s really significant. So I have been working with a nutritionist who is a functional medicine practitioner. She’s very experienced in the United Kingdom and I’ve been working with her for many years.

Versha Carter
Precancer diagnosis coincidentally feel very supported by her. But I also again, because I’m in this really blessed position of organising this conference and know a lot of people in the industry. I have an oncologist who has been also meeting up with me and with a nutritionist on Zoom calls and providing her inputs into my plan.

Versha Carter
And when I go to the oncologist meetings at the NHS, my husband laughs at me because I barely mention the word nutritionist. When I say my integrative team. I Chuck in the word oncologist all the time and even though I’m talking to them about another oncologist, they still are dismissive.

Versha Carter
But I have learnt very quickly that if I say the word nutrition to an oncologist, I get more roll dice, you know, and all I’m trying to do is get them to be more understanding of an acceptance of all the things I’m doing around my cancer care.

Versha Carter
And the other thing is we need to work together. And this is really, I mean, simply if I want to travel and get travel insurance, I need my, my oncology team to be in agreement with the plan that we’re working together on.

Versha Carter
So I know I can’t just say, no, this is what I want to do. I’m going to do this. I need them to buy into it because they ultimately can impact my life while I have this cancer diagnosis, which they also say is going to be for life.

Versha Carter
I have an incurable cancer in their mind, which I really hope is not the case, but it’s just it’s not a supportive meeting at all generally. And I also, I should just add, my husband was really nervous about me coming onto this podcast with you and I.

Versha Carter
He has mentioned a number of times just don’t tell them what hospital you’re at because he’s nervous that the backlash will be that I will suffer with my relationship with the oncologist by just talking openly about some of the frustrations.

Versha Carter
And if it’s just shows you the kind of environment that we’re operating in, the a bit of a fear basis that I might be punished for speaking my mind.

Robin Daly
Well, sobering stuff. Thank you so much Berger for for laying it all out there and in such a comprehensive way. I’m giving sharing just so many aspects of what’s important to you, how it’s working, what is not working at all and how you’d like it to be.

Robin Daly
I think it all sounds completely and utterly reasonable when somebody’s talking about working with treatments that could be life saving. This is a life and death situation and to not respect somebody’s choices under those circumstances to me is completely wrong.

Robin Daly
And the thing you’re saying about the attitude towards supporting you in a positive manner with the choices that you’ve taken, couldn’t agree more. That’s completely the right position for the oncology team to be in, even though they may be sharing their view of what the success of one thing or another may be.

Robin Daly
That’s fine. But it’s this attitude towards you which is really a damaging thing for many people. I I think you have the resilience to get through it, but many just don’t.

Versha Carter
Yeah, I really feel for other people. I mean, just generally, yeah. I feel blessed that at least I know I have enough knowledge behind me that what I’m saying is based on evidence. I know that if I’m persistent and part of me just hopes that I can help educate them at the end of it that they will see that I attention and wouldn’t it be amazing if I do cure myself of this incurable cancer?

Versha Carter
And I hope I do, just partly just so I can show them so.

Robin Daly
All right. Well, we’ll leave it there. Thank you so much, Versha. It’s been a really excellent addition to our podcast.

Dr Penny Kechagioglou
Thank you Versha.

Robin Daly
Thank you for listening to Cancer Talk. Do subscribe and look out for the next edition of our podcast. And if you have friends and colleagues interested in the development of UK cancer care, do pass on the details of Cancer Talk. Goodbye.