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The Growing Influence of Cancer Support Communities

Chris Lewis, founder of one of the UK’s largest and most influential online cancer communities, joins Clare to discuss how cancer communities are evolving to support many cancer patients, not just as a source of communal solace but as a powerful political and media advocate for patient rights and improved services.
Press play in the audio player below to hear the interview.

Please find below a written transcript of the interview.

Clare Delmar:
Hello and welcome to On Focus brought to you by The Focal Therapy Clinic, where we connect you with issues facing men diagnosed with prostate cancer that are little known, less understood and almost never talked about. Prostate cancer is now the most commonly diagnosed cancer in the UK, and with this somber fact comes a multitude of challenges and opportunities. I’m Clare Delmar. Joining me today is Chris Lewis, award winning global cancer campaigner and creator of Chris’s Cancer Community, where thousands of members engage regularly with Chris’s insightful blogs and take inspiration for their own cancer journeys. Chris, thanks for joining me.

Chris Lewis:
Clare, it’s a great honour. Thank you for inviting me.

Clare Delmar:
And such a beautiful day as well. So wherever people are listening to this, I hope they can imagine this beautiful Indian summer day in the UK.

Chris Lewis:
It certainly is one of the rare ones.

Clare Delmar:
I’ll agree with you on that. So, Chris, we’ve got a lot to talk about. I think overall, I really want to hear about the community and how you can help people who are diagnosed with cancer and specifically for most of our listeners, men and their families who have been diagnosed with prostate cancer. So I’d like to start off by asking you, when you set up Chris’s cancer community, when was that and what were the issues that drove you and, of course, the challenges you faced at that time?

Chris Lewis:
So it was way back in 2012, I set up Chris’s Cancer Community. Just to put a little bit of background on that. I got cancer, I got an incurable cancer in 2007, a blood cancer. Then I had a stem cell transplant and lots of very, very complex treatment and that introduced me to the world of cancer. I am now a fully paid up member of the club, unfortunately. But I realised once I had my own personal cancer experience that actually things weren’t as advertised. In other words, the support was very poor I found. I didn’t find anything joined up at all particularly. And it was a great upset to me, not just for myself because I’m quite a forward guy and I don’t have any problems finding things that I need. But actually for other vulnerable people, and I use that word vulnerable because that’s what people tend to become once they hear the word cancer.

Clare Delmar:
Yes, indeed.

Chris Lewis:
So I was very upset that I saw cancer patients, you know, once you hear the word cancer, I saw discrimination against people with cancer, things like insurance, all sorts of things, jobs, mortgages, banks don’t want to lend to you once you’ve got cancer. And these were things that I was seeing for the first time. And I said to my wife, look, I know I have a very poor prognosis, but this is something I need to do something about. They need to hear from the horse’s mouth what actually is going on, fancy TV adverts by charities and the like, are just not cutting it anymore. So Chris’s Cancer Community was born in 2012. It took me a few years to get back on my feet, if you like, from the cancer treatment and everything that had gone on in my life because of that. And back in 2012, the internet wasn’t such a vast thing. I had no experience whatsoever of Internet. You know, I’m really from the dinosaur days of if I want to speak to somebody I picked up the phone and this was all new to me. And friends of mine said, oh, you know, if you really want to be a voice, it’s not just in the UK. You need to be the voice. You need to be all over the world. And I said, how on earth am I going to do that? So they started me off a very simple website, not the one I have today. And Chris’s Cancer Community was born.

Clare Delmar:
Wow.

Chris Lewis:
So the issues are quite common when you enter social media. So first of all, we all start with no followers and everyone looks at my social media following and laughs. But actually I started with zero followers on it on any platform. I didn’t really know what I was doing. So it was a bit sort of suck it and see. But I was very passionate about what I was writing for. So I created the community not just for me, really. I was interested what other people’s views were. Was it only me that was finding these things? And if it wasn’t, what were the people finding? So I put this out onto the internet and I thought who is going to see this? I had it in my mind spinning around cyberspace, my post. But actually people started to engage with and the longer I went on, I found I had an audience, crazy as it might seem, and it certainly was to me anyway. It built very slowly and organically. And actually it gave me a lot of information and gave me some data, you know, some really early data about what other people were feeling…

Clare Delmar:
And experiencing…

Chris Lewis:
Yeah, exactly. Exactly. When you’re going through cancer, you think you’re the only one that’s going through those issues. The reverse is true. So the Internet has been a great medium for us to join, like minds if you like, across the world. The challenges I faced was getting out there, really, because all the big charities, all the big organisations of health care, drug companies, they’ve all got all these internets and they’ve got people working on the website, all fancy stuff. So one of the issues I faced was getting my stuff recognised, but I never found it really any different to my normal life. And that was, I always stuck with my principles of being honest. And I couldn’t pretend on the Internet that I was something that I wasn’t. So I just stuck to the honesty, and I wrote all the posts really from my heart and other people shared it. And we just had a really great, really human community, nothing to do with charities or any of those things. It was just how we were feeling. It was very sort of independent of anything else, really.

Clare Delmar:
So how big is the community today?

Chris Lewis:
Well, that’s always a difficult one to judge. So on my social media, I suppose across my platforms, I have about 50000 followers.

Clare Delmar:
Wow

Chris Lewis:
Which, I don’t know how you judge that, to be honest, because when you look at footballers and pop stars, you know, they’re into the millions.

Clare Delmar:
Yeah, yeah.

Chris Lewis:
But I do know when I look around on the cancer platforms, there aren’t many individual players, not like big organisations, but individuals that have that sort of following. And I suppose, you know, I’m only talking about cancer day in and day out, so it’s not fashion, it’s not food.

Clare Delmar:
Do you find the issues change? Do you find that you’re responding as much from hearing what your members say to each other as to what you’re picking up because you have links to various policy makers and health providers?

Chris Lewis:
Yeah, very much so, Clare. And to be honest with you, that’s what stimulates me. That’s what really stimulates me about social media and my website and everything else in the fact that every single day I get up, there is a different issue, whether it’s my own issues or issues that other people have raised. Every day there is a very different issue. And of course, now we’ve got Covid. You throw that into the mix and there are so many issues for us. Cancer, it’s non-stop. It’s vast work, Clare, as I’m sure you’re very much aware.

Clare Delmar:
I mean, I’m well aware that – you’ve just mentioned covid – so I wanted to ask you about that. I mean, you’ve been a particularly strong voice for the cancer patients that have been delayed or compromised in any way by covid-19. Can you talk about how this has played out?

Chris Lewis:
Yeah, I can. And it’s been basically frustration, Clare, over the time. I’ve been running this blog now since 2012. And every now and again I look back for some old content and every few years I’m seeing the same things come up, cancer poverty, lack of action, those sort of things. And, you know, that’s that’s been the same for eight years. And so for me with covid, the things that have shown up now with covid and cancer that I just couldn’t… I’ve got a bit of a voice, of course, now in the community. I’d say I’m an influencer. A lot of people don’t like that word. But when I say something, people do listen. So I guess that there is some sort of influence there. And I just couldn’t sit back anymore and watch people die unnecessarily because of treatment they’re not receiving when they should do. I’m not talking about money. I’m just talking about organisation. You know, everybody these days, all I want to talk about is money, but that’s not what I want to talk about.

Chris Lewis:
So let me just ask you quickly, because you’re such a global influencer and I will use your term influencer, I can see that. You must have found, I mean, obviously, Covid has affected everybody across the world. And have you found cancer patients delayed everywhere or is there some kind of ranking or how do you help people in systems that you’re less familiar with because you’re based in the UK?

Chris Lewis:
Actually, I’m quite well familiar with most of the cancer systems around the world, particularly the US. I have a lot of followers in the US, but all around Europe and pretty much I’ve travelled across the world. I’ve spoken in a lot of countries and I have a lot of followers, a lot of clinicians, not only patients, but I have a lot of followers that are clinicians from around the world. And quite frankly, cancer is the same problem. We make a lot of things complex, to be honest with you, that shouldn’t really be complex. Basically the problems around cancer are global. It’s not just the UK. We’re not only having this problem. You look at the States, you look at Canada, areas that don’t have the sort of health service that we have and that we have become reliant on, of course, there are so many different issues from around the world, but the principles are roughly the same. The treatment, for whatever the reason, whether you’re paying for it or you’re not paying for it, your treatment, is delayed.

Clare Delmar:
And you’re seeing that everywhere?

Chris Lewis:
Every single place I look and you know, the real big factor for me, the real one that capped it for me to turn me into action, if you like, is the fact that how covid dominated the world. The world. Yes, it’s a frightening thing, don’t get me wrong. But actually, there will be a lot more people that die of cancer than will ever die of covid ever. And basically, we will find a cure for covid, or we will find a way of living with covid. But actually, cancer we won’t and we haven’t. And basically, what frustrated me more than anything was to see everybody come together, which is a positive thing. That’s a positive thing to fight this covid-19 right? It’s great to see labs and charities and everybody to do their very, very best to get rid of these covid-19. But why doesn’t this happen with cancer? That’s what I don’t understand. Cancer is not one disease, for anyone who gets confused. We know it’s much more complex than that. But I don’t understand that if we can work together around the world against covid, which we must, why can’t we do it with cancer?

Clare Delmar:
How are you campaigning to support these patients? Is this kind of the backdrop to it about one campaign?

Chris Lewis:
It’s not one campaign. Let’s be honest. This is.. We’re in a different world now with Internet and Internet, you know, your campaign can be drowned out. There’s a lot of not naughty things going on on the internet.

Clare Delmar:
Absolutely

Chris Lewis:
My principle of the campaign and I’ve joined together with a lady called Jo Taylor, who’s again probably an influencer, she’s in the breast cancer sector. And we have very similar views… We want action. And, you know, we’ve had plenty of talking over our time. Jo, I think, was diagnosed just slightly after I was. So we’ve seen talking. We know what the problems are. We raised awareness. You know, everybody’s aware of the issues, but what we haven’t got is action. So we looked at it. We had a couple of chats. And basically the players… I’m talking UK now… It’s pretty much the same across the world. So the players are cancer charitiesto who like to be known for their campaigning, let’s say. Currently they’re just in a self survival mode because of covide, they’re getting no money and they’re not sure how many staff they’re going to have, so a bit busy looking after themselves. Not in a bad way. But that’s the fact of life.

Clare Delmar:
Yes.

Chris Lewis:
They’re not in any great position to shout on behalf of patients. Politicians. It’s quite obvious they’re not bothered about cancer because there’s enough publicity going on about the cancer issues in this country and across the world. But quite frankly, all they’re doing is getting drowned out by covid. So what we decided was the only way that we could make a difference was to give other patients the confidence to share their stories. And there are some really, really tough stories. I’m sure you’ve seen plenty in the sector you’re in. And because people, let’s be honest, if you’re feeling very poorly and you’re feeling very vulnerable, the last thing you want to do is “fight” the system for the things that you should be entitled to. And, you know, people haven’t been doing that. We’ve let the big boys, they come up with a campaign, they spend millions on that. They give us a few little soundbites on the television. And we think these big charities, they’re doing their work, but that’s nothing. They spend millions of pounds on that and nothing ever happens. Let’s be fair. It’s just promoting their names. But we want to see action and s what we’ve tried to do, Jo and I, we called it Patients Together. #patientstogether. And that’s because we want to give people the confidence to share their stories, tough as they are, because on the Internet, you know, the Twitter, when people are seeing those stories, we’re gathering much more support. When those are public, when you give them to a charity with greatest respect, mostly they use it for their own purposes, for fundraising or something else like that. It’s very rarely used to change the system. So by making noise, we hope to shape the government that way.

Clare Delmar:
OK, let me just ask a quick question about the charities, because I agreewith you there, first of all, there are many and again, globally, of course, but even in the U.K., there are some big ones and then there are some small ones and there’s some arguments about why there are so many. But the second question is certainly with regard to the big ones. And I’m just going to challenge you a little bit on your point about what they do. I mean, my understanding is that certainly I can name a few of the big ones that actually spend a lot of their money on very important cutting edge research with the end goal of new discoveries, new drugs, new devices, new diagnostic procedures to reduce the impact of cancer. So, yes, I understand that’s been obviously curtailed and compromised during covid, but do you not see a future for them working in alignment with the community you’ve built so that your community can inform them?

Chris Lewis:
I’d love to see that, Clare, but quite frankly… I mean, I know virtually every CEO every cancer charity in this country, most cancer charities I’m doing some work for in some form or another, whether it’s a consulting basis or voluntar. They all know me, including the biggest ones. But the biggest ones are the most difficult to get any form of collaboration from. They have their own agenda. They might not see me as a good advocate, if you know what I’m saying, because I speak out, I speak on behalf of patients. I criticize their work at times, right? I’m not on their payroll. I’m here as a recipient of services. Quite frankly, most, let’s say, don’t give value for money. But you know, the charity pound, most of them make that into 30p, if you’re lucky and I’ve got my own little charity, every charity gets is like £100. You know, look, a lot of charities do good things. I’m not here to bash charities. They could be a whole lot better. But they don’t work with patients on the whole because they’re worried, patients speak out. They’re worried about their own brands and their own fund raising seems to come before that. Yes, they work with patients, but they tame patients. They’re supporters of the charity anyway. They’re not really independent. So…

Clare Delmar:
Right.

Chris Lewis:
I’ve spoken to two or three major charities here, and all I can do really with them is embarrass them on social media because to try to get any collaboration from them is almost impossible.

Clare Delmar:
OK, so if I could just move a little bit towards towards patients themselves and direct this more around those with prostate cancer. I know we’ve spoken before about your work with a prostate cancer support group in South London. So I’d like to ask you what you see is the most common theme amongst this group and what advice you would give to someone newly diagnosed with prostate cancer.

Chris Lewis:
So I got into the… As you say, I got into the prostate cancer support group, and that was a new world for me. So I’ve been doing that for ten years.

Clare Delmar:
Oh, wow.

Chris Lewis:
Yeah. And it’s a local group to me, I wanted to give something back to the local community for me that was important. And it was important not to be involved in my own disease. So they offered me a role there to do prostate cancer. And I thought that’s good, I’ll learn something from this because I didn’t really know much about prostate cancer.

Clare Delmar:
OK

Chris Lewis:
But now I do, after ten years working with the guys right. And the answer to your question, the first answer is that, the most common, is confusion on diagnosis and treatment options. Basically, that without question is the number one. As you well know, you’re in the sector of prostate cancer and there are many, many different ways of dealing with it.

Clare Delmar:
Yes

Chris Lewis:
Of course, there are different degrees of prostate cancer, let’s make that clear. Using the pussycat example. There are big ones and small ones. But it’s a very, very confusing issue. And I can understand why that exists, that confusion, because if you… What I find from from the experience of talking to these guys is that if they are talking to a surgeon, the surgeon would always want to remove the prostate. Always because that’s what he does. Right? But then if you talk to somebody else, they will obviously promote whatever bits they’re doing so I don’t think it’s made clear enough, is my opinion because every new guy we get has got the same issue. So it seems it’s not made clear enough, that there are various alternatives to the first offer of treatment. Does that make sense?

Clare Delmar:
Yeah. I mean, I’m wondering if part of the confusion is because there are these different stages in the diagnostic process, not to mention different approaches to it. And is it a question of being more joined up or is it something different?

Chris Lewis
Probably a combination of the two, personally speaking. I think the joint thing you talk about, is an issue throughout cancer, by the way, not just prostate cancer, but that’s an issue throughout healthcare, I would suggest.

Clare Delmar:
Yeah, yeah.

Chris Lewis:
But my experience in cancer is that it’s not joined up as good as it could be. And I’d say, yes, that’s partly it, I would say. But also my experience is that anybody who’s got diagnosed with cancer, particularly guys, because we’re not good in those situations at all, we leave it late generally to go and see the doctor because we’re big tough guys, we don’t go to the doctors as frequently as we should and we don’t talk about it very often. So once you hear that word, cancer, I know for most of these guys, they just want to get it out of them, whether that’s the best thing or not. But they just want to get rid of the cancer psychologically.

Clare Delmar:
Yes.

Chris Lewis:
So a lot of guys go for the operation to have their prostate removed when that might not necessarily be the best thing.

Clare Delmar:
So what advice do you do you give to a lot of these men in your groups?

Chris Lewis:
And that’s easy as well. Take your time, because basically… Everybody thinks that when you’ve got a diagnosis of cancer that needs removing in the next day or two and thankfully, in a lot of cases, it isn’t that at all. That’s only the start of a longer process where you do actually… In most cases of prostate cancer, you probably die with it rather than of it.

Clare Delmar:
Yes.

Chris Lewis:
So, you know, there is a bit more time than I think the patient perceives when they hear that word cancer.

Clare Delmar:
Yes. Chris, I’m afraid we’re running out of time, but I want to thank you so much for your very, very valuable, very personal insights. And I hope we can speak again soon, maybe more specifically about about men and how they perceive their choices with prostate cancer. So thank you.

Thanks very much.

If you’d like to engage with Chris and Chris’s Cancer Community, visit his website at www.chris-cancercommunity.com, follow him on Twitter, where he is known as @christheaagle using the hashtag #patientstogether or find him on Facebook at Chris’s Cancer Community. And to learn more about patients experiences with prostate cancer, visit us at www.thefocaltherapyclinic.co.uk. Thanks for listening and from me, Clare Delmar, see you next time.

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