Interview with Alexei Sayle

Transcript 

Charlene: Good afternoon, everyone. Thank you for joining us. My name is Charlene, I’m the Marketing and Fundraising Executive at SarcoidosisUK. We’ll be starting our interview with Alexei Sayle in just a couple of minutes, but firstly, I’d just like to say thank you, everyone, for tuning in and thank you for watching all of our recent videos as well. As many of you know, we’ve been doing a lot on Coronavirus and vaccines. So, if you would like to catch up with any of our previous videos, you can do so by heading over to our website under the Coronavirus Information section, or they’re also all available on our YouTube, Facebook, and Twitter channels, if you would like to go back and look at any of those. I will just say before we start our interview that, of course, everyone knows it’s a really difficult time at the minute in terms of fundraising and donations really are essential for us to continue our vital work. So if you are able to make a donation of any amount, that would be extremely appreciated; you can do so over on our website which will enable us to keep doing what we’ve been doing and help fund research that is so vital into finding a cure for sarcoidosis. So thank you once again for joining and I’m delighted to be joined today by a very special guest, quite different to some of the recent videos we’ve been doing, so it’s nice to get a bit more light-hearted content for you guys. So today, I am joined by Alexei Sayle, and many of you will know him from the comedic movement in the 1980s. He is one of British comedies, the Godfather really, of the alternative comedy movement. So thank you so much for joining us, Alexei.

Alexei: Yeah, happy to be here.

Charlene: Fabulous. Thank you. How have you been keeping during lockdown?

Alexei: Alright, you know. I go for a lot of long walks with people. And yeah, that’s basically what I do.

Charlene: Thank you so much for joining us today, your time is greatly, greatly appreciated. And as I said, many of our viewers will know you. So I’m sure you don’t need an introduction, but I’m going to give one anyway. So in the 1980s, Alexei was, as I said, a central figure in the British alternative comedy movement. He originally studied art before training to be a further education teacher and then became the first MC for London’s Comedy Store when it opened in 1979. He was voted the 18th greatest stand-up comic of all time on Channel 4’s 100 go-to stand-ups in 2007. And he starred in a number of TV shows including the ‘Young Ones’ and his own Emmy Award-winning ‘Alexei Sayle’s Stuff.’ So we are absolutely thrilled to have him, and it’s very, very great for us to have such a notable face on screen. And so, of course, the main reason that we have got Alexei on today apart from his absolute comedic greatness is because Alexei is a sarcoidosis sufferer himself. So we’ve had a few questions sent in already, and if you’ve got any questions that you’d like to ask Alexei then be sure to comment them down below. But we’d really like to just have a bit of a discussion with him and find out a bit more about his sarcoidosis journey, and I’m sure a lot of you will be interested in knowing more about that as well. So we had a few questions already come in. Firstly, Alexei, when were you first diagnosed with sarcoidosis? And what were the early signs of things for you?

Alexei: Well, it was; I think it was early, it was like 1990 or something like roundabout? Yeah. 1990 and I started getting these weird kind of raised circles on my head. Didn’t know what it was and nobody I went to knew what, various people didn’t really seem to have any idea, doctors or anything, but I was doing a tour of Australia and my wife said, well, they’re the kind of experts in skin diseases in Australia because they have so many types of skin cancer. So while I was in Australia, I think I had a biopsy. And the results came back, and they said there was sarcoidosis. When I got back to the UK, I think I also had an X-ray and they found that all the glands down my trachea was swelling, but then the circles kind of went away more or less, and I didn’t really think anything of it. So I didn’t really go into it. And then it seemed like there was a lot less information about it then. And you know, I just kind of forgot about it, really.

Charlene: For sure, did you did you know what sarcoidosis was before you got diagnosed?

Alexei: No. I’ve got a friend who used to write, a guy called Matthew Norman, who used to write a column in The Guardian about his hypochondria, it was called ‘The hypochondriac,’ and I’ve actually got three autoimmune conditions with virtually no symptoms. I have sarcoidosis, and he’s really jealous of this. I have a thing called Harlequinism, which is where you sweat on different parts of your body. And this hand is a lot colder than this hand. And if I exert myself, I sweat there, but if I have a curry, I sweat there; it’s very strange. A friend of mine also had, it’s very, very rare, a friend of mine also had it. They used to go to Oxford, they’ve got a unit there, and they would her coat in flour and then put her in an oven. Heat her up and see where she sweated. Any who, so I’ve got sarcoidosis, Harlequins syndrome, and I’ve also got a thing called Lichen planus, which again, you get like of a kind of webby bits of skin, sometimes it really doesn’t manifest itself. But anyway, so yeah, so I didn’t really know much about sarcoidosis. But then, in late 2015, I suddenly, for a couple of seconds, the room would start to spin. And then it just kind of correct itself. And I really didn’t think much of it really. But then one evening, I suddenly, the room started to spin, and I just began projectile vomiting. And I couldn’t stand up; I completely lost my balance. I couldn’t see, really. Actually, we thought it was just a virus, really like some kind of flu. So I went to bed and continued vomiting throughout the night. But the next morning, I was no better. So we dialled 111, a doctor came around. And he thought that I suddenly got Bell’s Palsy as well where my face completely dropped, and the doctor thought I might have had a stroke. So they took me to the hospital. And then again, there was a; they couldn’t agree what was wrong with me. Some thought it might be tuberculosis. But it was Linda actually remembered that; my wife Linda remembered the biopsy in Australia in 1990. And actually, she’s so well organised that she still had it. So she found the piece of paper and shared it with the doctors, and then…

Charlene: Wow, that’s incredible.

Alexei: Yeah, I was transferred from UCH to the neurological hospital. I was in there for a week, and you know, I couldn’t walk or couldn’t see really. But then I kind of got better. I got better fairly quickly really, you know, everything came back

Charlene: Yeah, it sounds like you had quite a quite an intense experience at the start.

Alexei: Yeah, I mean, it was. It was intense. But the doctors thought, you know, there is a kind of sarcoidosis that comes back every 30 years, really, and that’s the type I’ve got, really.

Charlene: Yeah, definitely, because that’s  the thing with sarcoidosis, obviously, as all our viewers watching will know that there’s no treatment, so it doesn’t go away, it just goes into remission. And obviously, you can have flare-ups and things. And that is part of why our work is so vital because we’re trying to find this, this cure, you know, so that, that people don’t have to go through the same thing. I think a lot of our sarcoidosis community, they struggled in the first initial part of that diagnosis because it’s so unknown. And I know a lot of people still struggle when they go to see their doctor, and they might not know as much as they should do about the disease, which is really why we’re trying to raise awareness and, and spread the information so that it’s more commonly known because a lot of people never even have heard of the disease before they get diagnosed. So it’s definitely very important. We’ve had a couple of comments, Alexei, from people who are watching live, Eileen says, ‘fantastic, great to have him on board’. Sarah is saying that you are an extremely funny man and it’s lovely of you to be doing this with us. Peter Deverland also says ‘such a legend, the young ones, and comic strip presence was so fantastic. So sorry you’re going through this certainly very little information about sarcoid in the 90s. I was sadly in the same situation’. So yes, a lot of people obviously do go through this, but it’s great to have someone like you speak out about this, because this is how we do raise awareness and show other people that anyone can go through it. And it’s great to have that information from yourself. And so, you said that you’re doing all right now, at what point did you think that it was most challenging for you? Did you find that it really impacted your career in any way?

Alexei: Um, not, not massively. I actually got about 5 or 10 minutes to stand up out of it. So comedians, comedians, the impetus is always, so my last show, I talked about sarcoidosis and the experience of being in hospitals. So as long as you can get some stand-up out of any tragic er.

Charlene: That’s a true comedic point.

Alexei: That’s always a win. I mean, it’s funny, really that I mean, my memory of it, in some ways is quite vague. Now, really, I don’t know whether I was in such shock. I was put on steroids for, my face collapsed again. A few weeks later, I was put on very strong steroids for only for ten days. And it’s funny when I saw Trump when he had Coronavirus, and then they put him on steroids. And you can see it was actually the same kind of high that steroids; I think a short dose of powerful steroids is, I feel fantastic. Like you feel really energetic. Then you’d kind of slump, but you’d feel okay; I really enjoyed it was only it was only like ten days or something. It worked very well, and the doctor thought that that was a good sign that my sarcoidosis responded very well too.

Charlene: Nice. It’s funny; you mentioned kind of that that buzz you kind of got from the medication. Some people I know had very adverse effects. So whilst on steroids, Phil experienced extreme fatigue. And we’ve actually had a few people comment live asking if you’ve ever had issues like that, like the extreme fatigue or struggle sleeping with your sarcoid?

Alexei: No, I don’t think so. Really, I think the reverse. It didn’t affect me in that way. It’s funny, though, I was hospitalised in December 2015. I had the second volume of my memoirs was coming out in March 2016. And so, you know, there was a chance that it would impact the publicity that I was doing for the show. And it’s funny, there’s a video on YouTube that I did with the publishers, with Stuart Lee he interviews me, and I was just looking at it the other day. And I mean, to me, I look really ill. And I mean, it was about maybe two months, two and a half months after I’d been hospitalised and there’s something funny about my skin I think. My responses are fine.

Charlene: It sounds like Linda really was your saving grace. And I know a lot of people, and their support system that they get from family and friends is so vital. And especially with it being something that a lot of people have never heard of. They kind of really need that support around them. Because a lot of people, you know, do suffer for a very long time, unfortunately. And do you think, I’m assuming having her, well, she really was the cause of you getting diagnosed?

Alexei: Yeah, yeah. She’s amazing.

Charlene: Yeah, that’s lovely you have that. And you were able to get that support from her and her being the one that led you to being diagnosed.

Alexei: Yeah, did everything. And you know, she’s very good with doctors and stuff like that. And yeah, the fact that she hung on to the biopsy reports for nearly 30 years. Extensive filing system.

Charlene: Incredible. She hung on to that longer than I’ve been alive! So that’s very, very momentous. Well, we’ve had some other lovely comments come in that I’ll read just to boost your ego a little bit. Alexi Alerdrin said, ‘Alexei, you’re a true, a hero of a political comedy. And we all love where you’ve come from’. Karen Bridget says ‘It’s so interesting to hear you talk about your experience and comedy is the only true way to cope with the pain of life sometimes. It’s great to know that you’re a fellow sarc warrior’. And now Jane says, ‘He’s the best, this man got me through childhood Friday nights. Thanks for chatting to us today’. So it’s clear you are very, very loved by our community already. So we touched on lockdown earlier. And we were just saying previously off camera that you’ve actually started doing a lockdown series where you’re biking around London and bringing people along the journey with you. Has that been given you a bit of a bit of momentum to keep going during these difficult times?

Alexei: Yeah, I don’t think I would have. I mean, I’ve sort of toyed with the idea of doing podcasts and so on and so forth. But never really had the impetus to do it before now. So I do a podcast, which is just a conventional kind of podcast, really. But I also do these bike rides, and we just fix a couple of GoPro cameras onto a bicycle. And then I ran it, basically, right around London talking to myself, hypnotic and relaxing, I think to just look at the footage really, regardless of what I’m saying. You know, it’s quite nice. You know, I quite enjoy watching the footage, really. And I’ve actually been on the bike ride. So yeah, it’s something different. You know, the whole podcast world is, you know, my working model is that obviously, I do something, it’s broadcast on a channel, so it has authority, and I get paid a lot to do it. The, you know, doing kind of podcast, we give stuff away, it costs you money to do it. And you’re kind of giving it away for free. And you’re competing with every other idiot on the internet. It’s still something that I think is an interesting area to dabble. I have some kind of problems with it, I think.

Charlene: Yeah. Well, I’m sure that it’s definitely bringing entertainment what you’re doing at the minute a lot of people in.

Alexei: Yeah, people seem to enjoy it, also one of the reasons is I use it to generate material because but I love to use the material in my own Radio 4 series, which does have which has an audience of, I think it’s like 4 million or something. But I don’t want too many people when I’m giving it away, I don’t want too many people to see it. So I actually don’t want my podcast to be that successful. So to anybody watching, don’t watch my podcast,

Charlene: There we go, you heard it here first. So were you contacted in any of the lockdowns Alexei to be asked to shield by the government?

Alexei: Yeah, I mean, I’m not. I don’t know whether that’s gonna get me arrested saying. They offered me food parcels, and you know things like that, and so I mean, I just got in touch with somebody or other and just said, well I don’t need it.

Charlene: Yeah, if you’ve not got a need and you’ve got your support system around there, then…

Alexei: Yeah, I’ve got no symptoms. I don’t see why I should be shielding, really. I also know a couple of people got those food parcels which was like something out of World War II, tinned potatoes and Fray Bentos. I didn’t want one of those. I mean I actually have had Coronavirus as well. I did a Coronavirus sufferer-hero.

Charlene: I see, and have you been fortunate enough to get the vaccine yet?

Alexei: Yeah, I’ve also been vaccinated.

Charlene: Brilliant. I know a lot of people with sarcoidosis, were kind of concerned about potential side effects and things. Did you experience anything that was untoward or out of the usual realm of the side effects to be expected when one gets a vaccination?

Alexei: Not really. I mean, I did, I think, which was a sign obviously that I had had it that I reacted. I was quite ill again for about three days and felt very much like I felt when I had the Coronavirus. I mean a milder version of when I’d had the Coronavirus, you know, in the first place. So, apart from that, you know, it hit me quite hard. My arm was sore for like four or five days. And I was quite ill for, I think, three or four days. But, you know, I think compared to the protection that you get from the virus, it’s a price worth paying, I think.

Charlene: No, definitely. And as I said at the start of the video, we’ve done a lot of Coronavirus videos, and we’ve done two vaccine videos as well. And we would definitely recommend if you do have any doubts still or any questions to go back and watch those videos with Dr Robina Coker and Dr Anna Blackney because they are very informative. And they really did go into a lot of depth around the vaccines. So if you do have any questions, then do refer back to those.

Alexei: Now there was no, I mean, I think does SarcoidosisUK say you don’t really need to shield if you’ve got sarcoidosis.

Charlene: The thing is with sarcoidosis; obviously, it’s different for everyone, and some people with sarcoidosis of the lungs are very severely affected and have been contacted by the government. Sarcoidosis is one of those; it’s hard because you can’t put it into a single bracket. It doesn’t affect everyone in the same way. And so we suggest that people do go by the advice that their doctor has given them. And of course, they’ve taken all the necessary precautions that they need to during this time. But it’s great to hear that you haven’t had too many negative side effects and that you’re doing well.

Alexei: Yeah, I mean I walk about at least like 10 kilometres a day.

Charlene: Yeah, that’s actually a great point walking is, I think one of the best things one can do at the minute really. Just getting out there and keeping yourself sane. It’s a COVID-friendly activity to be doing. And it’s really good, particularly for sarcoidosis patients, and just to be keeping that activeness. And being fit and healthy is really important as well.

Alexei: Yeah, yeah. I can’t imagine myself staying in, staying in the house.

Charlene: We’ve had some more lovely comments saying ‘this is helping us to feel closer to other humans outside our daily group and some level of sanity’. So thank you. And, and Eileen has said ‘one of the funniest and transgressive comedy sketches I ever seen, was the homoerotic paramilitary sketch in the 1990s’. So clearly a big fan there, and everyone in the comments is absolutely loving this and hearing you talk about this. So thank you so much. I’m aware that we’ve we don’t want to keep you too long. Alexei, you’ve been very gracious for giving up your time to us. But what would, if you were to be in the position now of someone who has been diagnosed with sarcoidosis; obviously, this is a very troubling time anyway, to be diagnosed with something in the midst of a pandemic. It’s a lot to be handling. Do you have any advice for just how to cope with the severe effects that it brings on or how to cope in those early stages where you’re a bit confused and don’t fully understand everything that’s going on?

Alexei: Yeah, well, obviously, I mean, I think I’ve been lucky in that my sarcoidosis is relatively symptomless. I did have a friend who had it much worse, and I feel very sorry for them really, I mean, all that you can do is get as much information as possible. I mean, it’s a strange, it’s a strange illness, isn’t it? I think that you probably you have to do as much as you can; I think you have to try and live your life alongside this illness really.

Charlene: Now, of course, and as you touched on then about information, we have got some fantastic leaflets that are available to download from our website and are very informative on the different types of sarcoidosis if you are seeking information. That’s a brilliant place to start off with. And as I mentioned, we do these Q&A videos regularly. And most recently, they’ve been very COVID focused, but we do have them on other topics as well; we’ve got an upcoming one about vitamin D, I know a lot of people have questions about that. And yes, as I said, the website really is a great source of information for people who are both newly diagnosed and have been long time sufferers. We do also have a Facebook group if anyone would be interested in joining that, who is not already part of it. That is a great platform where members and the sarcoidosis community really come together to share their experiences. I know it just helps people feel a little bit less alone, which I think everyone on Facebook at the minute who’s tuned in can definitely feel that from this video. It’s nice to have that feeling of someone else who’s going through the same thing.

Alexei: Yeah, I think it’s nice. I mean, I think that’s one of the things that technology allows. It’s a wonderful thing to be connected to other people, you know, even virtually really, to be part of a community I think is a very profound experience.

Charlene: Definitely. And one thing I can say for the sarcoidosis community, it is a very strong community. Even though there are not as many of us as other people, the community we have got is very, very strong. So it’s great to have that support. And thank you for joining our community today, Alexei. It’s been great to have you be a part of it and I think you put a smile on people’s faces, which is brilliant during this time. So thank you so much. Thank you for joining us. I hope you’ve enjoyed this video everyone and as I said at the beginning of the video, if you are at all able to make a donation to SarcoidosisUK, that would be extremely appreciated. We’re trying our utmost to continue raising as many funds as we can and fund vital research into a cure of sarcoidosis. It is very difficult at this time without being able to run our usual events, so if you can donate an amount to sarcoidosis UK, then please do so over on our website. And we look forward to welcoming you and to our next video. Keep an eye on Facebook page for more updates about when our next videos will be, along with the times. And we look forward to chatting with you then. So thank you, and once again, thank you to Alexei; you’ve been great. It’s been great chatting to you!

Alexei: You’re welcome.