Living with COVID live webinar transcription

Dallas: Good morning, everybody, and welcome to today's webinar on living with COVID. I'm Dallas, and I'm the Director of Services for Lymphoma Action, and this morning I'm delighted to be joined on the panel by Graham Collins, who I'm sure many of you recognise. Graham is a consultant haematologist from Oxford, and helps us on many of these webinars as our doctor expert, and also runs the Lymphoma Management course for us. And we're also joined by Angela Waind, who's a consultant counselling psychologist, I hope I've got that right Angela, from North Cumbria area. And our expert by experience, Gillian Napier, Gill, who is somebody with lymphoma who has also got experience of having had COVID and COVID treatment recently. So, although the focus of the webinar is living with COVID, we received many questions from yourselves, from the audience, about the current vaccine and treatment situation. So, we would like to cover that area first, and then we'll move on to thinking about how it really feels to be living in this world with COVID. The emotional side of it, and the practical side of it, and we'll hear from our panelists about what they're hearing from people they're interacting with, their personal experiences, and hopefully some information, and some support, and some tips for you all who are on the call this morning. 

So, let's have a think about the vaccination status and evidence around that to start with. And the sorts of questions we've had on this are the value of vaccination, is there research looking into its use and its effectiveness? Are the risks for getting COVID the same for all the different types of lymphoma, depending on your treatments and those sorts of things? And how long are people with lymphoma immunocompromised for, and what do we think might be the plans for ongoing vaccinations? Is this going to become an annual jab, a bit like the flu jab? So, lots and lots of questions there about vaccines, and I'm going to ask Graham if he wouldn't mind starting off on those. 

Graham: Yes, very happy to, that's a lot of things you mentioned though, Dallas, so I'll try and give a broad overview. So, the first thing to say is the vaccine programme has been very successful, I think. And from the initial trials looking at the Pfizer vaccine and the Oxford AstraZeneca vaccine demonstrating very high levels of protection against severe disease. And, just to reiterate, we've talked about this on previous webinars, but the purpose of the vaccine isn't necessarily to prevent people from getting COVID, although it's nice if it does. It's more that it shifts the spectrum of disease to a milder end, and prevents hospital admissions, severe forms of COVID, ICU admissions, and of course death. And the initial trials showed that these vaccines were highly protective. Now, this was of course pre-Omicron, and as each variant emerges, we do have to re-evaluate the situation. But the current vaccines do seem to have at least reasonable activity against Omicron, in addition to the previous variants like Delta. And the government's strategy, as most people will be very aware, is very vaccine-heavy, hence why mask wearing now is not mandated in the vast majority of areas, and most restrictions on lifestyle have been removed. Which is controversial for the more clinically-vulnerable patients, completely understand that, but that's because the government's strategy is very vaccine-heavy. Now, of course those original trials looking at vaccines didn't have many people who were clinically vulnerable with cancer or specifically lymphoma and other blood cancers. 
 
So, there have been studies looking at that, and the study that I'll highlight – because it's the one I was involved in so you tend to know the ones you're involved in – was the PROSECO study (which is very interestingly named: there was no alcohol involved, I can assure you). And it was essentially looking at patients with lymphoma, so very specifically looking at patients with lymphoma who are vaccinated, and looking at how they respond to those vaccines. And they were looking, really, at two arms of the immune system, because the immune system's very complicated. One arm is the antibody responses, so they were looking at antibody responses to the vaccine, but they were also looking at T cell responses. T cells are cells of the immune system that kill virally infected cells, and we think that you need both arms of that immune system to be active against COVID to provide really good protection. Although quite what the balance is between those two arms of the immune system, how important each of them are, we're not actually that sure, but both arms are probably important. And what it showed was that people with lymphoma are less likely to develop antibodies, particularly those who are on treatment or within six months to a year off of treatment, especially if that treatment contained rituximab (an antibody which many patients with lymphoma, B cell lymphoma, certainly receive). They are less likely to produce antibodies to the vaccine, and that's concerning, there's no two ways about that. 
 
However, what was reassuring is that T cell responses were maintained, and might even have been a little better, weirdly, in those patients who didn't have an antibody response. Now, the problem is we can measure antibodies reasonably easily, and we can do those in NHS laboratories, but we can't measure T cell responses in NHS laboratories: that's a specialist research tool. So, I can't say to my patients 'We can test your T cell function and see how protected you are.' So, if you have not developed antibodies, it's likely that you've had a T cell response, but not for certain. There's about 25% of people still who have developed neither, and that is concerning. 

And then the other caveat that I want to put in is the PROSECO study and other studies like it don't really have the power to look at how much protection this is giving against actual COVID infection. These studies are hundreds of patients, but that's still a relatively small number, so it's very difficult to say, 'over a certain antibody response gives you protection, over a certain T cell response gives you a protection’ if you're a lymphoma patient, we don't really know. So, all that study looked at really were these laboratory markers of response to infection. But I think the message I give my patients is based on that: definitely get vaccinated, and actually the more vaccines you have, the more likely you are to develop an antibody response, so it is worth having the fifth dose. Even if you haven't responded in terms of antibody levels to the last four, it is worth having it. And I would be relatively reassuring even to those patients without an antibody response that they still may well be getting benefit from those vaccines. 

Dallas: That's really interesting, Graham. Do you think it will become an annual vaccine that becomes part of our daily living going forward? 

Graham: So, this is speculation but yes, I do. You know, what we do know is that immunisation does wane with time, that's in everybody, not just people with lymphoma, and so I would imagine that we will be having a booster jab. And what might of course happen is a bit like flu, where the jab is slightly different ever year, depending on the dominant variant that's around. So, that would be my prediction. And it'll be no doubt autumn, because, you know, we know that autumn/winter is when the waves of viral infections usually are worse. 

Dallas: Yes, absolutely, thank you. So, if we could move on to thinking about the treatments that are now there for COVID, Graham, and I'll stick with you for the time being. Could we just remind people maybe what the processes are for receiving treatment for COVID, and just give us a little bit more information about that treatment, maybe? 

Graham: Yes, so, this has been a really positive development for clinically vulnerable patients, in that if you now have a COVID infection-, and that has to be proven now by lateral flow, it doesn't have to be PCR-based, it's lateral-flow-based. And I should say my comments here are based on England, I'm not quite sure what happens in the devolved nations, but if you're lateral-flow-positive, you should then receive a phone call within 24 hours to assess you for suitability for outpatient-based treatments. And those treatments, there are three of them that I'm aware of, one is an antibody called sotrovimab. Now, that's given intravenously, so people do need to attend the hospital, there's a designated area in the hospital which takes COVID-positive patients to be treated with sotrovimab. Or there are antiviral treatments which are oral, and these are usually sent out to you. So, there's something called molnupiravir, which is reasonably effective to prevent severe disease and hospital admissions, and there's a more recent oral treatment called Paxlovid, which is actually a combination of antiviral tablets all rolled into one. And this seems to be very effective at preventing from serious infection and hospitalisation, albeit with the caveat that most of the trials done were in the Delta era, rather than the Omicron era. But there's reasonably good laboratory evidence that most of these treatments are at least effective in some degree against Omicron. And those oral agents are usually taken for about five days. The sotrovimab, the antibody, is a one-off infusion. 
 
And what happens, when they ring you, they assess you. So, if you have symptoms that are either getting worse or at least not getting better, and if you're within five days of those symptoms, then that usually is when patients are eligible. However, if you've not got any symptoms, or you're actually a lot better than you were, or you're beyond five days of starting the symptoms, then it's not always appropriate for patients to receive those treatments. 

Dallas: Thank you. Gill, would this be a good time for you to just share with the audience your experience of having some treatment for COVID recently? 

Gill: Yes. It was January, January the 23rd actually, and I hadn't been feeling very well. I'd gone to bed, and through the middle of the night I woke up and I couldn't breathe. So, I did a lateral flow test, which was negative. I went back to sleep, or tried to, and in the morning, I looked, and the lateral flow test had two lines on it. So, I did another one, which immediately tested positive. So then, at the time this was the PCR protocol, so I did a PCR test, which came back positive on the Monday, and then I was rung up on the Tuesday by a doctor who worked in the local RVI [local hospital], who asked me all the questions that Graham was talking about, and went through the list. She was a very pleasant lady, and she said, 'right, I think you qualify,' or, 'you do qualify. You'll be hearing from the pharmacy.' And then probably within an hour or two after that, I was rung by the pharmacist, who said that the tablets would be coming. I was asked – I can't remember whether it was the doctor or the pharmacist – whether I had any difficulty taking tablets, because the tablets themselves were very large, and that's what I do remember about them. So, from the Sunday night when I couldn't breathe, they were knocking on my door delivering the tablets by the Tuesday evening, so I was well impressed with the way that worked. And I took the tablets, it was five days' worth. The COVID itself was uncomfortable, but doable, if you know what I mean. I couldn't get out of bed for some days, I lost my appetite, but it certainly kept me out of hospital. I don't know if you want me to say anything now about the post-COVID, the aftermath, or shall we leave that for a bit later on, Dallas? 

Dallas: I think we can probably come back to that, but it's really good to hear a story of somebody getting the treatment in real life and that it was benefitting you, even if the tablets were rather big to swallow. So, that's a good tip for anybody who might be receiving those tablets from their local pharmacist. We probably shouldn't move on without mentioning Evusheld, the prophylactic treatment that is being discussed across the media at the moment, Graham. Could you tell us a little bit more about Evusheld and where we're at with it at the moment? 

Graham: Yes, so, this is a combination of antibodies which are there to prevent COVID in the first place. So, rather than early treatment to prevent severe disease, this is actually to prevent you getting COVID at all, or if you do, to keep it mild, without needing additional treatments. It's given as an intramuscular injection, again as a one-off, and it can last for at least six months. The thought is it may last for up to a year, but the current evidence we have says it's at least six months. And it is very effective: the clinical trials that have been done are very effective. Again, it's largely against the Delta strain, but there is evidence to suggest it would be effective against Omicron. So, I think it is seen by some as a potential key to freedom almost to people without antibody responses, to be able to have antibodies given to them as a one-off injection. So, it is licensed in the UK, the MHRA, which is our licensing body, has licensed it, but it's not yet funded or available, which is a frustration. You know, I think many of us do share the frustration of our patients not to have routine access to that agent, but that's where things stand at the moment. 

Dallas: Fabulous, thank you. And just to say to our audience that if you wanted more information on vaccines, or Evusheld, or COVID treatments, please do feel free to visit our website, either under the 'about lymphoma' section, or in the news section, and you will find some more information, which hopefully you'll find helpful. 

Okay, so we are going to move on now, and we're going to think about the impact of living in this new COVID environment. Through the questions that people have been sending in to us, and through our own interactions on helplines and online support meetings, people have been sharing with us their concerns and their worries. And in some cases, really deep distress around living in this new environment with COVID ever-present. And while there have been risks over the last two years, there have also been measures and safeguards in place to help manage that risk, and to support and protect people who are more vulnerable. And we're now in a time where those restrictions have been lifted, and that guidance has changed. So, many people may be living with COVID and don't know they are, or they aren't testing on a regular basis, and that causes anxiety, for people who are living with lymphoma. And many say they feel more at risk now than before, and maybe even a little bit forgotten and abandoned. So, I want to spend the rest of the webinar really thinking about the emotional and the practical impact, and maybe sharing some experiences, and giving some support, and advice, and tips to people that are on the webinar this morning. 
 
But I just wondered if we could start just getting a broad idea of the sorts of things that you are hearing in your experiences before we go on to the practicalities. So, Angela, do you want to tell us the sorts of things that you're hearing from people with lymphoma, or with cancer, that are trying to live in this COVID environment? 

Angela: Very much what you've just been saying, Dallas, that you've been hearing from everyone who's been contacting Lymphoma Action. That although it was really constraining during COVID and during the height of the crisis when shielding was in place, when lockdowns were in place, there was actually a safety in that because everyone was signed up to the same agreement. So, there was a degree of predictability. Even though it was really difficult, and it was, because for some people they'd come from one lockdown effectively, if they had maybe just had a stem cell transplant pre-COVID hitting, straight into another one. There was still a degree of safety and predictability there that made it manageable, and then as all of those safeguards have been removed in the urge to get back to normal, whatever that is at the moment, that's felt a very dangerous place to be. Because the risks haven't necessarily changed if you've got lymphoma, or your way of managing those risks isn't quite clear yet. And so, understandably, that distress is there, and that confusion is there, and it takes some thinking about. And that's not about people not managing it, it feels unmanageable because it's quite unmanageable, and it needs a pause and some reflection about, 'What's your risk? What are your needs? What matters to you in doing that?' 

Dallas: Indeed. And Graham, is that the same sort of thing that you're hearing in clinic? 

Graham: Oh, yes, absolutely. And just to build on Angela's last point, it's a very individual discussion that we have with patients now, and you can imagine that clinics still really are dominated by these sorts of issues that come. I'm often being asked how much integration back into normal living – as Angela said, whatever that is – is wise? And it's so difficult, and I think it depends so much on the patient's view of risk. You know, some patients are very risk-averse, and that's fine, I think we can work with that. Whereas other patients, actually, they're totally fed-up with shielding, for their mental health they really need to get back to much more social interaction, and that's okay too. You know, we can give advice on how to do that in a wise and safe way, or the safest way that we would deem possible. So, I think, different people will come to different conclusions as to how to change their lifestyle in this new environment, but absolutely, there's a lot of worry and concern, and feelings of abandonment. You know, I said that we have patients who feel that their lifestyle is being sacrificed for the sake of the economy, which I can totally understand where they're coming from, so it's a difficult time. 

Dallas: And Gill, you're a person with lived experience, but you're also working with Lymphoma Action on Live your Life workshops, and attending support meetings. What sort of broad theme are you picking up from people? 

Gill: Well, I think there's still some anxiety. There's a range of approaches to living your life. Obviously, I've dealt with people all over the country, and it's from extreme care where some people aren't going out at all, or still basically more or less shielding, to more rarely, I have to say, almost living a normal life. I think it depends on where they are in their lymphoma journey, and also how confident they feel. Speaking for myself, I was starting to open out and do a few things with great care, I have no idea where I picked the COVID up, and it did knock my confidence. So, I've sort of regressed a bit, but I'm still intending to live a life. As I say, most people, I think, are taking a mid-ground and enjoying some activities in as safe a way as possible, and obviously we'll be moving on to the methods that people are using there. But there is also as well some anger I think, when we were talking about the Evusheld I think you hit the nail on the head when you were saying people were seeing this as a, sort of, 'get out of jail free' card, and people are angry that it's there. And I got very angry the other week when I read a newspaper report which said, 'And of course the UK is now “joyously back to normal”,' and it was talking about COVID, and I thought, 'Well, yes for some people it is, but not for people like us.' So, yes, I sympathise with the view that possibly we feel slightly forgotten. 

Dallas: Angela, thinking about ways that people who are living with lymphoma and who are anxious about that, could you give us any short tips on how people might manage that anxiety a little bit? 

Angela: Well, I think it's a really important starting point to go back to what Graham had said and what Gill has said, that this is completely personal, and it's completely understandable. The reality is those risks are there, this isn't about being inappropriately anxious, you're anxious because we've had so many messages telling us, in a short space of time, that you need to stay at home, and that that's the only place that's safe. So, we've almost got to re-draw the map, and that's really where I'm starting with people, is thinking about what is it that you need and want to do? Because there's a difference between that. Some people have got to get back to work, some people have got to get children to school, there are things that are immovable, and sometimes it's about the things you want to do. But it's helping people to start with what's that balance, as Graham said, between physical wellbeing and physical risk, and emotional wellbeing and emotional risk. Because those two things can't be separated, and they feed into each other. And I think when those anxieties are there, it's really important to find a way to just hit the pause button, first of all. Because when we're very anxious, we're in a bit of a hijack position, the oldest part of our brain takes over, and it starts to put in place some very automatic processes. And they don't involve thinking and weighing the evidence. So, anything that you can do to initially just create a bit of a pause, and a bit of a space to think in, is really useful. 
 
And that can be different things for different people, it might be mindfulness, it might be sitting down and having a cup of tea, it might be having a little yellow stretchy man or a hand warmer, anything that gets you out of your head in that moment, and back into the world so that you can then start to get your thinking-brain back online. And then sit down and work out, 'So, what do I want my map to look like?' And again, that's very personal. And there might be a bit of trial and error in working out what helps you to create that pause. Lots of stuff on the Lymphoma Action website, and lots of things on places like Macmillan as well, that are really useful ways of doing that quickly and straightforwardly that you can keep in your pocket. 

Dallas: Absolutely. And I think some of the anxiety, looking at the questions that we've had, seems to be coming from the interaction with other people, or the expectation that you will interact with other people. So, Gill, if I come to you first, if you're going to be in a situation where you have to interact with other people, what sort of things go through your mind, or what sort of things do you think about before you make a decision to do that? 

Gill: Well, I suppose it depends on the situation. If it's with friends and family, they're very aware of the situation, so I find that a much easier situation to deal with. But I'm starting now – I feel like I do want to get out there a bit – so I actually, after something like two years, went for my first visit to a supermarket. And I went in, and it was quite busy, and I was masked up, and virtually nobody else was. I just picked a few items, and I went in the ‘ten items’ bit, which was very crowded. And then I won't say I had a panic attack, but I looked around and I just thought, 'There's all these people,' and I actually paid for my goods and then I got out as quickly as I could: I went out through the no exit entrance because it was easier, and I didn't have to pass any people. So, I think that was a try-out for me, and I won't say it was entirely successful, but I think what I tend to do is if I know I'm going somewhere, I'll try and choose a less-busy time when I know there's a lot of crowds. I do go out with my friends, and I have said to them, 'You book where you want to go, and if I'm not happy, I'll just leave, and no offence.' I've sort of set the groundwork like that. But I do still feel that I'm missing out, I have to say, I do feel I'm missing out on what I used to do. And when we give the [Live your Life] workshops, we talk about a ‘new normal’, and I feel as if I'm just all the time finding ‘new normals’ to deal with things. 
 
But at the moment, I think I'm probably feeling more vulnerable than I have felt because all the restrictions have lifted, and people just assume, as I say, that we're “joyously back to normal”, but we're not. So, I don't know if that helps, but I do have some anxieties, but I try not to get anxious, I try not in the first place to put myself in a position where I'm going to be anxious. But I appreciate I'm lucky in that I'm retired, I don't have to go out to work, I don't have grandchildren, so a lot of the situations which people are dealing with, I don't have to deal with. So, I have a choice not to put myself out there, but that's not going to be the case for everybody. 

Dallas: And Graham, lots of people have been asking us about assessing the risk for things like travelling as well. What sort of things are you discussing with people in clinic about those? 

Graham: Yes, well, I guess the first thing to say is that there are certain features of a patient's disease and personal characteristics and treatment that may affect their risk. Well, it does affect their risk of a severe COVID course. So, it's important to remember that there are general risk factors that apply to us all, age being the classic one, being a man unfortunately being another classic one. So, older men are more at risk than younger women, but age is the really dominant one, so age really overrides everything, even immunosuppression, in terms of risk of a poor COVID outcome, so age is important. 

And then we do know that certain lymphoma types do put people at slightly higher risk of a worse COVID outcome, and it's mainly the low-grade lymphomas that seem to confer that risk. High-grade lymphomas and Hodgkin, you are at risk, but mainly during treatment and for six months, maybe a year, afterwards. But beyond that time, people's risk actually seems to return pretty much to the general population, which is quite reassuring. So, I am relatively reassuring to those people who've been treated for lymphoma with curative intent, so that's usually high-grade lymphomas and Hodgkin, and are a way out of treatment, and I might be a little bit more encouraging that returning to this new normal is probably lower risk for those people. But for people who've had recent treatment, or you have low-grade lymphoma that's active, then it is more of a concern. 
 
And the sort of advice we generally give is, as people reintegrate back into society, it's just to be sensible. So, if you're meeting with groups of people, it's best to do it in a room that's well-ventilated, even better to do it outside. Better that the people you're meeting with are well, ideally that they'll have had negative lateral flows, but that's increasingly difficult now people have to pay for lateral flows. 

Travel, I must say, is a difficult one. I think it is probably one of the higher-risk pursuits, travelling on public transport, plane, or a particularly crowded train. And the other thing to say about going abroad is there's not necessarily easy access to COVID treatments. I have to say I'm not really aware of how COVID treatments work abroad, whether you can have outpatient-based treatments if you happen to pick up COVID when you're overseas. So, these things, I think, all need to be taken into account. 

Dallas: Yes, that's really interesting about treatment abroad, because of course you can't take treatment with you just in case, can you? So, that's a really good thing to think about before travelling. 

Some people have also been talking to us about the difficulty of having conversations with other people about why we might be anxious to interact with them, why we might not want to attend an event or take a trip. Have you got any advice for our audience this morning about how you might have those conversations with people? 

Angela: I think Gill really hit the nail on the head when you said, Gill, about the people closest to you completely understand why it is you've got concerns, and what those concerns are, and what you need to be able to manage them. And I think when you're thinking about having these conversations, think about scaling it in that way. Start with the people it's easiest to have the conversation with, and remembering that it's completely understandable. You are trying to keep yourself safe, not just for yourself, but for other people. And that, on the whole, most of the people around you want to be able to do something to help, and so as Graham said, one of the difficulties we've got now is that lateral flows have to be paid for, so some of the safety mechanisms that people had before have gone out of the window. 

Just being able to be honest with people and say, 'This is the reason why I'm not very comfortable doing this,' or, 'This is the reason why I maybe don't want to go to that big event but I'd love to meet you outside for a coffee. I'd love to go for a walk.' Thinking about how you can say, 'I can't do that bit, but I could do this bit, and this is why.' It gives people a chance to be able to help you as well, and just holding that in mind that on the whole, people want to be given some advice of how they can do it, because they want to see you as much as you want to see them. Not being afraid to be honest in those conversations is really, really important. But it's back to what Gill said about going into the supermarket, strangely. It's that stepped approach, don't jump straight into thinking you've got to give long explanations to everyone. It's okay to say ‘no’ to stuff and it's okay to say, 'I'd love to do it but I'd be happier doing it this way.' People will understand. 

Is that your experience, Gill, that when you're talking to people, they can respond and they can understand what you're saying? 

Gill: I think on the whole, yes, but I'm just thinking of something which happened to me recently. A relative's husband died and I wanted to go to the funeral because she was really, really supportive of me a few years ago. But it meant I would have had to go across the country on the train, I've not been on a train yet, probably stay in a hotel, I've not done that, and then go to the funeral, and I knew there would be a lot of people there, because he was a very popular person. So, I explained that I wasn't comfortable going and I didn't, but what I have done, because I felt guilty I wasn't there, I've actually tried to offer support in a different way, like, 'Please come and see me when you feel up to it,' because I'm a widow as well so I know what it's like, recently widowed. 'Please come up and spend some time with me or we can go somewhere safe, like, I've just invested in a caravan, we'll go there.' That was one way, but I know she probably didn't realise – well she would have been aware I wasn't there – but she quite understood, but that didn't really take away my feelings of guilt that I wasn't there, and that was the first time over the last few years that that's occurred. 

Angela: That's a really hard one in itself, isn't it, is sitting with that uncomfortableness of not being able to do some of the things that you want to do, but working out where that balance is. And it's that balance bit, isn't it, Gill, it sounded like in that. I think that's really important, Dallas, of what's manageable in this moment. So that's in those conversations as well, that if it was only this one thing, if it was the funeral on its own, I might have been able to work out a way to do that, but when there's all the travel and the hotel stays as well, that's the bit that makes it unmanageable. 

So, being able to be honest helps people to understand, and then beautifully you put Gill, about working out a different thing to do because it mattered that you could support her and there was another way to do that. So, that's the other thing, Dallas, is being able to have a look at what's the bit that matters most in this, and is there a way I can do it differently? That's why the, 'I can meet you inside for a coffee but I can't go to the full christening,' or whatever that may be, really matters. 

Dallas: Yes, and Gill, I don't know if you or anybody you know has used the Distance Aware packs and badges, those visual reminders to people that you'd like them to keep their distance. Have you had any experience with that at all? 

Gill: I did get the badge when it first came out and I put it on, but actually I thought the badge possibly should have been a bit bigger, because it couldn’t be seen terribly well. I think the other thing is as well, just out of habit now, I maintain a social distance and I make sure I'm beside a window or beside an open door. I just do this naturally now, so that's one way. 

As I say – Angela was saying this about – friends and family know to keep their distance. I mean, I have given my sons a cuddle, they're adults, but basically, it's not that I don't love them, it's just that we maintain a distance because they're both out in the working environment. So, I still see them: I see them in a spacious room, we sit outside. I have actually been to restaurants with them, but the physical contact isn't there as much as it used to be, and it'll probably continue I think at the moment. 

Dallas: Yes, and Graham, I'm interested. Are you having conversations about people returning to work with the same sort of anxieties and needing to do the same sorts of risk assessments? 

Graham: Yes, absolutely, that's often quite a stressful time I think for people, particularly when bosses are variable understanding. I think some are very understanding, but others less so, and there's quite a drive now to get people back to the office for those who work in that sort of environment. Yes, so normally we have a conversation around what would constitute a safer working environment. Again, that usually is around a more social-distance type office environment, good ventilation, etc., but you know, not every workplace offers that sort of thing. Obviously, working from home is the ideal scenario in terms of pure safety, but of course some patients actually want to return to some form of face-to-face working environment for mental health reasons. You know, it can be very isolating working from home. So, all of these factors, again, come into play, and again, thinking about the patient as an individual. So, if I've got a young Hodgkin patient who's nine months from treatment, and who's fully vaccinated particularly, I could be relatively reassuring to them that the risk is pretty minimal, should they get COVID. Whereas if I've got a 63-year-old patient who's just finished treatment with low-grade lymphoma and it's been rituximab- containing, that's more concerning for them to return to a full-time, 9 to 5 office job with a commute on public transport. That would all be very high risk. 

Dallas: Yes, so people need to think about where they're at in their treatment, and add that into the risk assessments that they're making about who they're mixing with and where they're mixing, and those sorts of things as well. 

Graham: Yes, absolutely, and also what do you do if you're in a job which goes to people's homes? You know, I was talking to a plumber the other day about how they returned safely, and that perhaps is maybe not quite so difficult because I think you can actually ask for homeowners to wear a mask, while you're in the house, you would wear a mask. There may be things you could put into place which are more acceptable to everybody concerned, to keep you safe in that environment. 

Angela: That's a really important point though, Graham, isn't it? Its people being able to think about what they need as well to feel that safety. You know, having that as the foundation is the professional opinion from the medical team around them about what is your realistic risk around this, physically? Then, as you said, balancing that with the emotional risk, the psychological risks of not doing the things that you want to do or that matter to you, whether that's having a day a week in face-to-face. 

I think it's really important to use the team around you in lots of different ways around that, Dallas, whether that's if you've got access to a psychologist or a therapist, then getting them to sit down with you and have a think about what would make it more manageable for me and writing those letters for you, to your occupational health department. Whether that's work or whether that's university as well, because I've certainly had this with university students where they've gone from campuses where it was all online to now it's all face-to-face. There's been some middle ground in there, that's again back to what Gill said, made them feel quite abandoned and quite cut off from opportunities and from normal life. So, really using the team around you to think about, what do you need to feel safe in that, is really crucial as well. 

Dallas: Yes, that's a very interesting point about the practical use, if you like, of professionals to support your case in the work and study environment. Angela, I was just wondering, if we're feeling very anxious and we feel that those anxieties are impacting our ability to even think about getting back to some sort of ‘new normal’, how do we access help for that? What should we be looking for to help us manage those anxieties? 

Angela: I think there's a really wide range of help available, because that's what people need, is a wide range. You can feel really, really stuck and actually find that just one conversation where somebody says, 'Why wouldn't you feel like that, actually this is really tricky because it's really tricky. This definitely isn't about you. This is about this situation,' can be enough to help you to realise that, do you know what actually? I do manage this, and I manage this far better than I thought. In that case, that might be having an initial conversation with your cancer nurse specialist, for example, or one of the cancer support workers who's in the team, because usually, fairly routinely (and I'm looking at Graham now), they've had training in psychological skills and they're really happy to have those conversations, because they wouldn't expect you to feel any other way actually. 

So, just being able to name it is a good starting point, but there's a whole range of things from there. Obviously, there are things like the Action Line [Helpline] with Lymphoma Action where you can ring up and you can talk to someone, and that can be enough to do the pause and think about what might I need. Or your cancer nurse specialist, or GPs can also refer you into more specialised services. So, services like mine that's a cancer psychology service, where we've got clinical psychologists, we've got CBT therapists, we also have some physiotherapists linked with us, to help us think about what is it you need right now. And often what people need is just a bit of space to think it through and a bit of distance to be able to say, 'Okay, if I was looking from the balcony, what would I see that needed to be different?' 
 
There are more community-based places for support as well, so things like the improving access to psychological therapy services that have got different names across the country, so ours are called ‘First Step’ and ‘Mindsmatter’ in Cumbria and Lancashire, but they've got different names in different places. They're usually based in your GP surgery and you can go online, find them really easily, and just self-refer to them as well. There'll be a range of options within there from very low-level, short-term support, to much longer-term input. The other thing that can be useful is looking for things like Live Well with Cancer days that are run usually by the psychology services. They tend to be short events, ours are: ours are usually a 10 until 2 event with lunch included for face-to-face ones, or you can bring a family member too. And then just being able to hear how other people feel about that can make a real difference and can help the people around you to support you differently, especially if there are pressures there about just snapping back into ‘being normal’ because COVID has gone now, so we should just be trucking on. It helps people to get a different viewpoint. 

Dallas: Yes, that's really good. Gill, do you mind me asking what you have found the most supportive over the last two years, in giving you that confidence and finding a space, as Angela says, to take a breath and reflect, and think about things? 

Gill: Well, I think, obviously I'm referring again to family and friends who have been very supportive. Initially, during the preliminary stages of COVID, I didn't go into a shop. As I said, that was my first supermarket shop a couple of weeks ago, but I'm still online shopping: I didn't feel comfortable, so I can online shop, I'm going to do that. 

I think it’s really people being aware and as I said, I'm lucky I don't have to go out into the working environment. But I am a school governor as well, and I decided to go to my very first meeting face-to-face, after two and a half years. So, I went in and it was in a big classroom, because where we used to hold them, I said, 'Are you going to hold the meeting there?' She said, 'No, the head said a big classroom,' so I went there. The windows were open, the doors were open: I have to say, it was almost sub-arctic, but because I was there, nobody suggested shutting the doors or windows. And I sat there, there were about ten people in the room, and within two days I found that the person I'd sat two steps away from actually had tested positive for COVID, and then the head did. But I was fine: I had, like, a backwind. But it just brought home again, how you can make these steps out into an environment where you think you've kept yourself quite safe, and I'm not trying to frighten anybody here, but it's really the awareness, and I thought that was the safest I could be. Luckily, I didn't have anything. It was after my COVID infection, so maybe, Graham, I had generated another few antibodies or something like that. So, I was quite pleased about actually having done that, but again, it was like, gosh, that was something which knocked my confidence. I was trying to get out there and do things, and luckily escaped the bullet that time, but really, it just brought home again how aware you have to be. 

Dallas: Absolutely. 

Angela: Gill, sorry to interrupt Dallas, it’s just interesting, you know, what you were saying there that you take this really stepped approach to things, and you say, 'Okay, I'm going to risk asses it. I'm going to decide what I need to manage in here: what do I already know I need, what can other people do? Then I'll step in and I'll test it out, but then I'll evaluate it afterwards and say, did that work, did that not work? What does it do for the next thing?' That's such a brilliant approach because it's not a, 'I must do and now I've done it once, I've got to do it again.' It's, did it work, did it give me what I wanted from it, is there anything I'd do differently, to be able to take into the next steps, and I think that's how people move forwards. That's how the people I work with move forwards, is by thinking about what they need, taking that step, and then having a reflect on it: evaluating did it work or not, what do I need to do next time, and was it worth it? It overrides our brain's bit where it does its ‘better safe than sorry thing’, that can stop us from doing anything, so it doesn't automatically look at the good stuff. We need to draw that on a big board and show it to it, and that's what you were describing so beautifully, Gill. 

Dallas: Yes, absolutely. I think the other thing we keep mentioning of course, are people that are close to us, the family and the friends, and of course they may have their own anxieties and their own fears around that. Angela, have you been working with any families or friends of people that are immuno-compromised, and actually their anxieties are about their loved one? 

Angela: Absolutely, and often this applies outside of COVID as well, family and friends’ anxieties are often higher than the person who's actually living with the diagnosis of lymphoma, because they feel a real pressure to keep people safe. And quite often, it's the family members who are back at work, who are back at university, and they really worry about what risk they're transporting back into the house. Again, it's a bit of a journey, and I don't like that word either, Gill, so I'm with you on that one. 

Dallas: We need to find a word that replaces journey, don't we? 

Angela: We do, don't we? We're going to have to get on the thesaurus after this. But again, it's that trialing things. I've worked with people where at the height of the crisis, family members who had to be in work were either living separately completely, and were maybe staying in a caravan on the drive, and certainly was the case of one of my patient's wives. She didn't feel safe to come into the house so that's what she did, to people who get changed in the garage before they step foot into the house. But these are all people who have learned to – very courageously – change those things as they've gone along, and look, and see, ‘okay, is it safe for us to make a shift now, because actually this is quite a loss to have you in the caravan on the drive and be waving at you out of the window when you come home from work. I don't want that, that's not our life is like’. But it is a challenge: it is a challenge to do that, so I think the same thing applies to family members and friends, of getting whatever support you need as well. Don't think it's only for the person with the diagnosis. You're affected too. You're trying to keep other people safe, and you're trying to be well yourself. To do that, you need some support too. 

Dallas: Yes, I think that's a really, really important message, isn't it? 

I just want to change tack a little bit. We were having a pre-webinar chat, and Gill, you were telling us about how your COVID has persisted, long COVID I think is the term that's being used. Can you tell us a little bit more about that? 

Gill: Yes, as I say, I was diagnosed and I had the tablets, and although I was uncomfortable, I had breathing difficulties, I got to the twelve, thirteen-day period, and I think I then did a lateral flow which was showing that I wasn't testing positive anymore. I had about one or two days where I was a bit tired, but then I got – and it has been diagnosed as long COVID – overwhelming fatigue, and it reminded me so much of the cancer-related fatigue when I was having my treatment. And then I didn't want to eat: I never lost my sense of smell, but I totally lost my sense of appetite, I lost ten pounds. So, I just gradually, to be honest, I wouldn't say I gave into it but because of the fact that I'd had the cancer and all the treatment, the fatigue, I knew what to do. It was, like, pace myself, plan things, don't do anything too energetic, because I did find, as I got slightly better, and I think it was Graham mentioned this, you sort of think, 'That's a good day.' You do something and you overextend yourself, and then you're wiped out for two or three days afterwards. I will say, I think I was keeping a diary: it's just a thing I do, a journal, just one or two sentences, but I think it was about 70 or 80 days before I felt almost normal again. I did go and see the nurse, because I was slightly concerned at the time, and some of the symptoms seemed to me to indicate a recurrence, so I was fast-tracked in to see my consultant ahead of my normal appointment time and she had a really good check of me. I think there again, reassurance is the word: we both thought it was long COVID and she offered me a scan, but I feel as if I'm virtually radioactive. So, we reached a compromise, again Angela, that's that word, and I'm actually going in to see her next week, so we did, instead of our six-monthly appointments, we did it to two to three months so I could go in and check back with her. 

I'm feeling fine now but it really did make me feel very poorly, and so if I hadn't had the medication I'd had, I don't know where I might have ended up, so I think it's a combination of factors. 2016, I was diagnosed, but it is low-grade, so it was follicular. And I think I was quite surprised at how poorly I felt and how long it took to get over. 

Dallas: Graham, Angela, have you got experience with long COVID? 

Graham: Yes. I mean, to be honest, not huge experience. I mean, obviously we've had a lot of patients who have had COVID, and some of those patients, it has taken a while for them to get over that and my impression of it is it is like other post-viral syndromes that we tend to see, but just more frequent. Now, although I'm a doctor, I'm not an infectious disease expert, so some people would probably shudder at that observation, but fatigue does seem to be the prominent factor. I had COVID myself and I kept doing the morning coffee test, you know, ‘can I smell this coffee and taste it?’ Thankfully, I feel I didn't lose it, but that actually, taste and smell, we sometimes shrug it off but that has been a big impact in some of my patients' quality of life, that that's taken so long to recover. My other observation with it though is patients who have had it gradually do, on the whole, seem to have got better. So, similar to Gill, it has been protracted sometimes, but I've not – thankfully – yet had any patient who, you know, years after COVID is still suffering. Obviously, those cases exist but it's not common. 

Dallas: Angela? 

Angela: Yes, just to echo what's already been said really. I have got some of the people who I work with, who've had long COVID symptoms on top of their lymphoma or their other cancer diagnosis that they're living with and, very like Gill, there's been this sort of waxing and waning of symptoms where you start to feel like you're getting better, then there's a bit of a setback.

But really importantly, just thinking about what Gill said about how she went back to what she already knows: you've been here before. Yes, this is fatigue for a different reason, but it's that same flavour of fatigue that you get with cancer-related fatigue that you get in long COVID, that's a level of exhaustion that other people can't quite understand that's got the brain fog with it, and you can't find words, your memory can be a bit impacted. So, recognising that actually you've probably dealt with this before. And as hard as it is, having a bit of a step back, rolling back a bit, a bit like the little cars that you used to have to pull back to charge them up? It's that kind of approach where it's giving yourself the permission, and I think that's a really important one as well, cutting yourself some slack and being a bit kind to yourself. It's okay to just take a step back and work out, ‘what do I need to do to manage this today’ and to build up slowly again. 
 
Then, you get less of those ‘boom and bust’ events that Gill was describing, where you've got an okay day so you think, 'My to-do list is a mile long, so best get on it,' and you'll crack on and then find that you've used every ounce of charge in your battery, and the next two days are wiped out because that's not the path forward. 

I think when we were chatting about it before, Gill, we were also saying that although unfortunately your local long COVID service would only meet with people who were twelve weeks past their infection, other places, your long COVID service will be a bit more flexible. Maybe the best route to navigate that is by asking your cancer nurse specialist to get in touch for you and say, 'Actually I know it's usually twelve weeks, but in this situation, do you think you could meet with this person and see what advice you can give?' Because it'll probably be really low-level stuff, just helping you to remember some of the stuff you already know, to be able to move on with it. 

Sorry for going off on a tangent, Dallas, but I think that's true of so many things as well that we've been talking about. Managing anxiety in relation to COVID, when we're talking about drawing the map again, actually over the last two and a half years, people have had to draw and redraw their map of what life was going to look like, and you had to do that when you got your original cancer diagnosis as well. 
 
So, it might be hard to remember some of that stuff, but you've done this before. And who helped with that, what helped with that, it's all there, but what you maybe need is just a bit of a space to try and remember some of that, and to get it down. So, it's connecting with the fact that you have probably got all the stuff you need as well. You just need a bit of space. 

Dallas: Yes, experts at living with the diagnosis and managing the diagnosis on a day-to-day basis. Yes, the power of that is considerable, isn't it? 

Angela: Yes. 

Graham: Can I also pick up on something Gill mentioned which I think is quite important, is that some of these symptoms do potentially overlap with symptoms of lymphoma, so it can be quite tricky, and I think, you know, Gill did exactly the right thing seeking help and seeing her consultant again. 

You know, when I see a patient like that, there are always four things that I assess for any new symptom, when I'm thinking could it be related to lymphoma. (1) Is it new? (2) Is it gradually getting worse, because most cancer-related symptoms do gradually get worse? (3) Is there any other good explanation for it? (4) Is it starting to interfere with the patient's life? Those are the four things that I assess. And thinking of Gill's: the two things that would reassure me there is, one is obviously she'd had COVID so that is another potential reason (but obviously the two things can happen at the same time). And the other thing is that Gill's symptoms seem to wax and wane, they come and go a bit; it wasn't a gradual decline. So, I think what they ended up doing which was this safety netting (so seeing Gill earlier than would otherwise happen), and obviously having that link always open between the patient and usually the specialist nurse so that patients can ring if things are getting worse so despite the plan and the reassurance things are still getting worse, actually that's a pretty safe way to proceed in that sort of situation. But it can be difficult, and you know, we're very used to and very happy to talk to patients on an individual basis if they're just not sure if this could be the lymphoma. 

Dallas: Yes, that's really important, isn't it? We're coming to the end of our hour together, so just before I round off, I'm just going to pop you on the spot and just ask you, if you could just give one or two short take-home messages to the audience that are with us this morning? 

Gill: I think it's a case of still being careful but don't think in terms of what I can't do, because that will make you anxious and disgruntled with life. Think, what can I do and how can I do it in a safe way? 

Dallas: Brilliant, fantastic. Angela? 

Angela: I think, back to what we've just said: remember that you have already done this. You're an expert in living with uncertainty. You've got all the skills, but give yourself permission to do things in a way that's right for you. Be a bit kinder to yourself. Talk to yourself the way you talk to other people, when you're thinking about how to manage this. 

Dallas: I like that. That's a little phrase I might take away with me. And Graham? 

Graham: Well, I'll have to come from a more medical point of view, so I think my take-home would be, we need to take this seriously still, but the measures that are in place, vaccines and early treatment, do seem to be working and producing less-severe COVID infection. So, I do want to end on a note of reasonable reassurance when it comes to the medical outcomes at least, of current COVID infections. 

Dallas: Fabulous, thank you. 

Thank you to all of you that have been listening live, and thank you to all of you that are watching on catch-up, as they say on the TV. A huge thanks to Graham, to Angela, and to Gill for joining me this morning. That was the most amazing conversation. This hour has just flown by, but just to end by saying, if your question hasn't been answered or this webinar has raised any issues for you at all, please, please use the information and support that's available to you from Lymphoma Action. You can access our website or you can get in touch with our helpline. Thank you again to our panelists. Thank you to all of you for listening, and have a great day. Bye for now. 

Acknowledgements 

With thanks to Dr Graham Collins, Angela Waind and Gillian Napier for being panelists on the original webinar.

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