Reflections and Projections - podcast transcript

Date: 2 May 2025

Voiceover (with music playing in background): The Lymphoma Voices podcast brings you a series of conversations around topics of interest for people affected by lymphoma, the fifth most common cancer in the UK.

Anne Hook: Hello. My name is Anne Hook and I'm the Publications Manager at Lymphoma Action and I'm delighted to be joined today by Roger O'Donnell. And he's the keyboard player of the band The Cure. Hello, Roger.

Roger O'Donnell: Hello, Anne.

Anne Hook: Some people listening to this will be familiar with the band The Cure, and I wonder if you could start by just telling us a little bit about your role in that.

Roger O'Donnell: Well, let's see. The band, I think it started in 1979. I joined in 1987. I've been a member off and on since, I left a couple of times for various reasons. Yeah, we're still touring the world, still releasing records and enjoying it as we enter our old age [laughs].

Anne Hook: I noticed that you were up for a Brit award literally very, very recently for your most recent album that you released. That's amazing. You're up for three.

Roger O'Donnell: Yeah, I don't think we stood a chance really to be with all these young bands. But it's… I don't know who nominates, but it's nice to be nominated. I think we won a Brit award in 1990 and maybe another time, I can't remember..

Anne Hook: Yeah. Fantastic success. You know, thank you for sharing with us today. But if we can go on to your experience of lymphoma and can you tell me, Roger, when you first suspected something was wrong with your health?

Roger O'Donnell: We started a world tour in autumn ‘22. It was an exhausting schedule. It was a ridiculous schedule. Way too many shows, way too much travelling. Everyone was exhausted. I went away for a holiday when it was finished in January of ’23. And then we were about to recommence the American leg, and I felt a lump. You know, I didn't think anything of it. I didn't have any symptoms; it was just a lump that felt strange. And I didn't do anything about it. And it got bigger during the tour and which was about 12 weeks. And then I came back home and it was sort of nagging at me and I was ignoring it. And saying oh, it's fine. And then finally I went to the GP and he examined me. He said, “oh, it's nothing to worry about, but maybe you should get a scan”. So I said, OK, I'll get a scan.

We had a one-off show in Chicago. We flew there and over that weekend I was starting to get quite worried about it. So I scheduled a scan. And it was a private scan clinic that's used to doing baby scans, and very nice ladies. And I said, "oh, look, I think I know what it is, you know, it's innocent". She said, “yeah, I think so”. She said, “do you want me to talk you through it, the scan or do you want to wait till the end?” And I said, oh, let's talk through it. And so she started the scan and instantly went silent [laughs]. She didn't say a word. And I thought, oh, wait a minute. And at the end of it she looked very pale and very disturbed and said “it's not what we thought, it's transparent. I'm going to ring your GP. Sit there.” That's when things clearly got serious.

I went home and I thought, oh, she's used to looking for babies. She doesn't know what she's looking at [laughs]. Which is very, you know, not right because she's obviously a trained professional. And then on the Monday I asked to see the scans and I looked at them and I was like, oh, this is very serious. And then I set about finding a specialist. And that's, you know, when the incredibly fast-moving train that I spent a year on started.

Anne Hook: And this was all in the UK was it Roger?

Roger O'Donnell: Yeah, this was in Devon initially. And then on my search for a specialist, I ended up going to London and that's where I had my treatment. And I had no idea it was lymphoma. I mean, it was the furthest thing from my mind. A very good friend of mine who was a leading drug developer, he worked extensively on cancer drugs. He said, “well, your age group, I think it could be lymphoma”. I'm like, what? And then when I saw the urologist, he said it could be lymphoma. So that's when I first heard the word.

I was very well acquainted with lymphoma. My ex-girlfriend, 16 years ago, had Hodgkins and I went through all the treatment with her. So I gained a great deal of knowledge at that time about treatment and outcomes etcetera, etcetera.

Anne Hook: So you were familiar with lymphoma? Gave you some insight into it.

Roger O'Donnell: I saw a urologist first who did the operation and then sent the lump away for biopsy. That was awful. He came back a week later and said it's either nothing or it's B cell lymphoma. He said I’ll know next week. And so we had a weekend from hell where I was just absolutely paralysed with fear. He came back with a classic quote: “you're going to need a bigger boat”. Which was ‘you're going to need a different doctor’. He said you're going to need a haematologist and I'm referring you to a specialist in that field. And I called him a rock star and he was. So, I phoned his secretary the same day and she said, “oh, he's extremely busy”. I said well, I've been referred. And she said “OK, well he can see you at 5 o’clock tomorrow”.

So I drive to London and I walked in. And he laid out the treatment plan and said “we don't like to use the word cure in this business, but it's a very good chance”.

Anne Hook: I can hear the emotion in your voice.

Roger O'Donnell: When you think you've got it all under control, like emotionally, then it just comes back. And in fact, I've been doing therapy for the last few months. I did some during treatment, but I didn't really feel it necessary then. But I suffered with quite strong post-traumatic stress disorder. PTSD: that's right. And it's been very helpful. And I had no idea I was going to hit that wall, you know, after all the treatment.

Anne Hook: Do you feel that you felt this emotional at the time of diagnosis or was it after the treatment that the emotions came in?

Roger O'Donnell: All through the treatment, I just wanted to push through it and I rarely got emotional. I felt very strong and that I needed to get this, the treatment, done and get through it and get back to the normal life. I just felt really strong. I just wanted to get through it. It wasn't until the end. I think also it's a lot of denial. And also the thing with lymphoma is, you can get away without calling in cancer, you know, you can say, “oh, I've got lymphoma”. You don't say, “oh, I've got blood cancer”. There was a degree of putting it in the third person and denial which allowed me to get through it.

Anne Hook: And did you share your diagnosis with the band?

Roger O'Donnell: Yeah, I had to because we were due to go to South America for a three-week tour. At first I thought I was going to walk away from it quickly. Then it became apparent, and I couldn't go and that was quite a shock to me. You know, all of the things that I love doing: playing on stage and touring, my hobbies, which are flying and, you know, driving cars, obviously they're…. But all of a sudden it became completely unimportant. And the most important thing was the treatment.

So we discussed what approach and what treatment I was going to have, because at one stage I said, “is there any chance that I could delay treatment so that I can do this tour?” And the lead lymphoma drug specialist in the US said to me, “if you could see my face right now, you wouldn't be asking that question”. So that was a no.

So I had a huge backup and a very good friend at the Princess Margaret Hospital in Toronto. He's head of lymphoma there. And I spoke to him regularly. And it was quite useful because there were questions that I wouldn't ask my specialist because it was almost as if I would have been challenging his views and his right to decide what I wanted. But it was good to have that second opinion And it, you know, all confirmed. Nobody ever told me to do anything different.

Anne Hook: And I think that's it: a lot of people that we talk to say “I don't want to ask challenging questions because I don't want them to feel I'm not putting all my trust in my healthcare team”. But, you know, you're in that fortunate position where you could get that back up. That reassurance.

Roger O'Donnell: Yeah, it's a fine line. It's it is a fine line. And I did extensive research and I wanted to know. If a plumber comes and fixes something in my house, I don't wave them goodbye and pay the bill. I ask them what they've done or why they did it. And at one stage I did suggest that we slightly modify the treatment. And he ran it past the team and they all agreed. And I was happy that we did that. And I wouldn't have known about that and I wouldn't have said, you know, if unless I'd done the research.

Anne Hook: So what was the treatment plan for your diffuse large B cell lymphoma?

Roger O'Donnell: There was an option at the beginning whether I would do R-CHOP, which is rituximab (which is the R) and the rest of them are standard chemo, or having two of the new style drugs. I actually had four rounds of R-CHOP, and this was the discussion we had about dropping the CHOP for the final two and just going with rituximab. Rituximab attaches to the B-cells and identifies them to the immune system to be taken out, whereas the others just kill everything and are very harmful.

There's quite a high risk of central nervous system involvement with the particular extranodal version that I had. There's a lot of discussion about whether it works, but I had two rounds of high dose methotrexate, which you're hospitalised for. It's high dose because it crosses the blood-brain barrier. None of the others cross in a high enough strength to attack anything if it's got into the central nervous system. You know, what are you going to do? I had two extended stays in hospital which were unpleasant. I had some more unpleasant drugs pumped in me, but are you going to say no? So I did it. I didn't question. I didn't question what we're going to do. We did two rounds. I mean, you can do four, but everybody said two would be enough.

And then finally I had 33 days of radiation therapy with an incredible doctor in London. He said “the statistics are: with radiation there's a 5% relapse”. He said “in actual fact, I've never seen it happen”. So that was another interesting experience going through it. And it's, you know, it's 18 seconds – like I used to count it – of the machine firing at you. And at first it was, I didn't feel any ill effects, but it catches up with you.

Anne Hook: If I can go back to the chemotherapy, but I do want to come back to the radiotherapy. How did you tolerate the R-CHOP and the methotrexate? Did you find it really tough? Did you have side effects? What was the impact on you?

Roger O'Donnell: I don't know how to explain it. Like, you can tolerate it. I think I swore never to drink again because I'd never, it's like the world's worst hangover for about 10 days. And I said that I would never inflict that on myself out of choice. The side effects are awful.

Anne Hook: So did you lose your hair, Roger?

Roger O'Donnell: Yeah. Yeah, my hair fell out, I think two weeks after the first R-CHOP.

Anne Hook: And how did you feel about that?

Roger O'Donnell: Well, I cut… my hair was shoulder length before. And so I cut it short because I knew it was going to happen. It was, what can you say? I mean, it was winter, so I could wear a hat all the time. And it's just, you know, something that you think unimaginable and unbearable: you just get through it don’t you. It's just another thing, it's like just another part of it.

The first chemo, I was like excited to get there. You know, I wanted to get on with it. Let's do this, let's get it over with. The second one. I was like, I really didn't want to go. And then the third one was at a different clinic and different nurses, and I wasn't particularly comfortable there. And I became very, very anxious. And I said to the nurses, “has anyone ever just got up and walked away?” And she said “no”. I said “well, I might be your first then”. And she said, “well, I think we can give you something to help”. And they gave me lorazepam and I took one an hour before every other chemo. And that really helped. Just took the edge of the anxiety. You know how you're going to feel before you go there.

The first one took 12 hours because rituximab, they have to put in very slowly the first time. I think it had to go in over six hours. And it's a long time. And OK, so you feel, you know, you're completely wiped out when you get home, and then you feel awful for the next few days. But then you're on steroids, which bring their own kind of hell with them. In two weeks time, you feel fine, you know, you're OK again. And then a week later you have to go back and do it again and you know exactly how you're going to feel. So the anxiety is what… you know. When I was first doing therapy, that's what we're trying to, uh, we're trying to deal with: coping mechanisms. So it, yeah, it's not fun. But, you know what, you get through it and it's killing the thing that's trying to kill you. So.

And then I had a month off. And then I did methotrexate, which by all accounts is just a nasty, nasty thing. It was very scary, because if your kidneys don't clear it within 48 hours, then you go into some awful state. But there's an emergency drug you can take: it brings you back, but does all kinds of damage. So, that was very scary.

Anne Hook: That must have been so frightening.

Roger O'Donnell: Yeah, the fear is the worst thing. You know, you get so scared of these things, and then you get there and it's like, oh OK, that wasn't so bad. So I tell anybody that's going into it, fear is your worst enemy and the more knowledge you can gain, the better. But it was fine, you know.

I went in 9 o’clock in the morning. I was on 24-hour fluids. So they hydrate you 4 litres every 24 hours. After 12 hours of hydration, high dose methotrexate. And I know that anything that's nasty comes in a brown bag to protect it from the sun. So this was about midnight. And then they check you every like half an hour to make sure you're still there. And then your body has to clear it from your system. And then they start to test your blood. And as soon as the level of methotrexate in your blood is below, I think it's 2.8, then you can go home. It's just a matter of getting through it.

Anne Hook: [I was] going to say, you mentioned that you had the methotrexate at the end of the chemotherapy. Did you end up having four doses of the R-CHOP followed by the methotrexate and then the rituximab, or did you end up having more?

Roger O'Donnell: I had four R-CHOPs and then two Rs. So four rituximab with CHOP, and then two rituximab on their own. And then a month off and then high dose methotrexate.

Anne Hook: Roger, you've mentioned how difficult steroids were for you. Can you explain in what way you found them so challenging?

Roger O'Donnell: Awful, awful. I mean the extremely high dose. You know, you'd be driving along and then suddenly you'd find yourself turning into a take away because you can't stop eating. And somebody says something wrong and you bite their head off. I mean the rage: uncontrollable. And non-stop talking. I mean, I talk a lot anyway, but I remember going to my sister. She's like “you know, you just didn't stop talking for four hours, don't you?” So it was awful.

Anne Hook: Did it keep you awake at night as well?

Roger O'Donnell: No, that didn't. There was a stage later on where I just couldn't sleep. I tried sleeping pills. I got some heavy-duty ones, the ones that they'll only give you like three of at a time. And I told them: didn't do anything. I mean, your brain is… your body's just like going on overdrive on everything. No, the steroids: very unpleasant.

Anne Hook: And then the plan was to do the radiotherapy that you've also spoken about. And how did you find the radiotherapy?

Roger O'Donnell: Well, again, I was scared. Fear being the enemy. Super-lovely people, incredible nurses. Big scary machine. Tattoos, to line it up. They just put some ink on the end of a pin and stick it in you. I'm like, “can't you be a little bit more artistic?” And then you lay there for 18 seconds, so it takes the longest time just to line you up because it needs to be accurate. And the professor came down and oversaw it all. And he was such a lovely man. I was very lucky.

You know, that was from the start of July until the end of August. And they said you're going to get fatigued and there might be some skin damage. And at first I was like, “this is a breeze. I'm not tired. Nothing's happened to the skin”. And then all of a sudden you hit this wall and you're like, “oh!” And then your skin disintegrates, but they give you this cream. So, that wasn't too bad. I mean, it was unpleasant, but it was it was all right.

And then I was done. And then I went and had a final PET scan. I was PET clear from day one. You know, once I'd had the surgery to remove the lump, there was never any disease in my body on the PET scan. I mean, it could have been microscopic. So I was treated as if I had stage 4. It's the same treatment. They talk about the pre- and post- rituximab era and it increased the success rate by 50% or some huge factor. And I said, “well, why don't they just try rituximab on its own?” And then, you know all the doctors and the drug guys, they're like, “OK, you want to sign up for trying it without the rest of them that we know that work?” You know, so how do we ever progress with this. Those modern drugs? The other one is CHIP. So that fools the B cells into opening up and then the drug fires chemo into the cell. It's just, you know, it's science fiction. And I love technology and I loved hearing about all that stuff. You know, as I said, I was disease-free after the surgery. So.

Anne Hook: You got to the end of treatment. So the radiotherapy had finished. And you've said earlier that that was when you had things suddenly seemed much more emotional.

Roger O'Donnell: I just wanted to get finished. We're building a house in southern Italy. I just wanted to go there and relax and recover and sunshine. But I mean, I was so wasted, I had to nap every afternoon and I just had no energy. And by the time we got to Italy, I just started to just become extremely emotional.I mean, my emotions all the way through treatment were like at number 11. If I, you know, saw a film about a dog getting lost, I burst into tears. So we went to Italy, we came back, we released a record, and I played on stage within a year of being diagnosed. And at that moment when I was looking out to the audience, I was like, I really need to use this for good, you know, to help other people, to show that you can get through it and that it's survivable.

And I railed against all these descriptions of, you know, like ‘chemo warrior’ and ‘you're a survivor’. You know, ‘you fought this thing’. I was like, I didn't do any of those things. I just lay there while they pump, you know, drugs into me. I wasn't a warrior. I'm not a survivor. But then on talking to my therapist, I realised that I was just in denial. I just didn't want to accept the kind of enormity of what I've been through. So that's what we're doing or what we have done.

I would describe myself in the third person. I would say, “oh, he went through that, he had to do that”. So we brought it back together.

Anne Hook: I can see it's had an enormous impact. Can I ask about the wider issue of your family as well? What was the impact?

Roger O'Donnell: Well, my partner it was devastating for her and I know how that feels having been through it on the other side. And there were times when I was difficult. There were times when I was just out, you know, after when I got home from the methotrexate, I was just out for 10 days. It was awful for her.

And I think carers are hugely overlooked. It was hardest for me to tell my family, my sister who I’m very close to, older sister. That was the hardest thing telling her. So I just turned it into a joke, which is what I did about everything. But it brought us much closer as a family. You know, we see each other all the time now. I've got two brothers and a sister. And it was nice, family wise, it was, you know, it was good.

Anne Hook: You know, as a keyboard player, did you play much during treatment? Was it one of your coping mechanics?

Roger O'Donnell: No. And one of the things that I discussed at the beginning was neuropathy. And that was just a huge worry for me. Thank God I never had anything in my fingers. I still can't feel my toes, but that was from the methotrexate.
But you know, I fall over a bit, but that's not so bad. If the feeling that I have in my toes was in my fingers, I don't think I'd be able to play. And that was a huge worry for me all the way through. It was too emotional to play. Anything that sparked any kind of emotion. I couldn't go anywhere near because I wanted to focus on just getting through it.

Anne Hook: Yeah. And as a musician, you obviously create music that makes other people feel very emotional. There's something very evocative about music. It takes you right back to somewhere, doesn't it?

Roger O'Donnell: Yeah. I've since recorded a solo record and it's not going to be about cancer. It's not going to be… it's more of a kind of reflecting on who I am and where I am now, you know. Because I'm also reaching another stage of my life: I'm approaching 70s. So it's an age thing. All of those things coming together, you know, the mortality, the awareness of mortality and also being faced with your greatest fear, which I think my generation anyway, I don't know, our biggest fear was to get cancer. I mean, I lost both my parents when I was in my late 20s. So to be confronted with that. I describe it as, you know, there's a knock at the door and you open the door and the mad axe man is standing there. And it's like “OK, now what do you do? Your biggest fear is now in front of you. So how do you deal with that?”

I'm not sure I'm any less scared of cancer because I know, and I saw enough people in very desperate places while I was having treatment. But I have an understanding of it, yeah.

Anne Hook: Do you think it's changed your outlook on life?

Roger O'Donnell: Yes, I think it has. I probably naively just want to be happy now and make other people happy. Being a professional musician is not an easy way through life and you give up a lot. There are a lot of sacrifices you make in terms of family and all sorts of things. And you know, you become very selfish to survive and to get through. And I think now it's time to turn it around a bit. A lot.

Anne Hook: I mean, the band is having huge success at the moment, so that must feel like a real positive.

Roger O'Donnell: It's bizarre at our stage in our career as we hadn't released a record for so long.

Anne Hook: And how did it feel going back to work after that long period of treatment and very difficult time for you?

Roger O'Donnell: You know what, I felt that things would be completely different. But I got back into rehearsals and it was just the same. It was as if nothing had happened apart from the back that I had short hair.

Anne Hook: Have you got a programme of tours and so on?

Roger O'Donnell: No, we're actually working on another record this year, possibly touring later in the year. I really don't know.

Anne Hook: And what do you feel like the future holds?

Roger O'Donnell: Ah, don't know? I was thinking this morning that my new solo record that I'm going to release in the summer is called ‘Projections’. And I was thinking that maybe it could have been called ‘Reflections’, but then that's looking back and ‘projection’ looks forward. So I think lots of good things. I mean, it's a very difficult time to be excited about the world right now, but there's so many good things. It's good to look forward. Just keep making music and trying to make people happy.

And one thing I didn't say was about the nurses and their devotion. They are tireless and amazing. And you know, I love them all and just the incredible doctor.

Anne Hook: Now, finally, I do have two other questions that we do ask everyone who shares their story on a podcast. And the first one, Roger, is what brings you joy?

Roger O'Donnell: Sunshine.

Anne Hook: The second question is what one thing helped you with your lymphoma, and living with lymphoma, that you'd like to share with others?

Roger O'Donnell: Having Mimi, my girlfriend by my side, couldn't have done it without her.

Anne Hook: Roger, it's been fantastic. And you've shared so much with us. That's really appreciated.

Roger O'Donnell: Oh, you're welcome.

Voiceover (with music playing in background): more information about lymphoma and the support we can offer to people affected by the condition, please visit the Lymphoma Action website at www.lymphoma-action.org.uk.

Lymphoma Action: inform., support, connect.

Total time 27 minutes

Disclaimer

This transcription has been automatically generated. However, Lymphoma Action has taken all reasonable steps to check its accuracy. The content is not intended to be medical advice. If you are looking for specific medical advice for your own personal circumstances always consult your medical team.