Latest / Forward Together: The Mesothelioma Podcast / Episode 1: Frequently Asked Questions
Transcript
- LIZ: Hello everybody, my name's Liz Darlington. a nurse at the University Hospitals of Leicester ⁓ and also the chief executive of Music Theleoma UK. And I'm here with my colleague Louise. Louise, would you like to introduce yourself? Louise: Hello everybody, I'm Louise. I'm a mesothelioma UK nurse based at the University Hospitals of Leicester. LIZ: lovely. Thank you. And I'm delighted to welcome you to this our first podcast. I'd to congratulate the Measithiliom UK comms team who have pulled together a plan for a series of podcasts. And this is our first. The podcast series is called Forward Together. And today's podcast is going to be focused on some of those more common questions that as a team of nurse specialists, we are asked. And there's about 30 Mesotheliomino specialists at the charity funds and we couldn't do it without our amazing donors. Thank you. And ⁓ we ⁓ are in contact with each other every single day and we get together face to face regularly for networking, education and training. We often talk about some of the common questions that ⁓ patients and their families ask us. So that's what we're going to focus on today. And I'm going to kick off by relaying some of those more common questions to Louise and then between us we're just going to back backwards and forwards a little bit about what we've learned over the years and how we might answer those questions. So Louise, we've actually done a poll as well of our nurses and asked them and that's how we've arrived at these questions. So Louise, the first question that I'd like us to have a chat about is this is somebody who's just been diagnosed and they're feeling really overwhelmed, what would we say to help them to understand a bit more about the disease and what might happen at their first appointment with the oncologist? So in your experience, what might happen? Louise: Well, yeah, I think we get this question asked a lot, Liz. And it's just really sort of reassuring people that when they come for their first appointment with the oncologist, that it will take ⁓ a fair amount of time, we'll go through a lot of things with them. ⁓ The oncologist will ask about their previous history, previous medical history, how they came to... have investigations and how the diagnosis was made. They'll ask about if they've had any other cancers in the family and just get some general information as to how the patient's feeling at that moment in time, if they've got any symptoms and what they're expecting going forward. And then We'll have an in-depth discussion about what treatments are available, how we can support them and where all that's going to happen. LIZ: And what would you recommend to people about bringing somebody with them to the appointment? Yeah, bring somebody. Louise: ⁓ definitely always, if possible, bring one or two people. ⁓ I mean, I've been in clinic consultations where we've had five or six members of family, but generally, you know, at least one or two people to bring with them because those extra ears are very useful. And also they have the opportunity to ask questions themselves and find out what's going on. LIZ: Yep. Louise: And we know from calls that we get through at later stages that if somebody has been to a clinic appointment on their own, they don't hear everything that's said to them. They don't often sort of understand everything that's said to them in great detail. And when they're trying to then explain that back to family members at a later date, it sort of gets a bit muddled. So we get a lot of calls from family members saying, well, what was said, what does that mean? LIZ: Yeah, I mean, on that note, I would, I'd really urge them to think about the consultation beforehand, write questions before you arrive, take a pen and paper with you and make notes through the consultation. You will be offered a copy of the clinic letter and but you don't have to have that some people don't want to have it but you'll you will be offered and that's usually a record but it's not a detailed record so it's used for medical purposes more than anything else but so I would Louise: So it's always useful. Yeah. No. Yeah. LIZ: really urge you to ⁓ take a pen and paper. Louise: Yeah, and some of the doctors will allow phone recordings as well. We've had that in clinic where people just put the phone on to record so that they've got the true reflection of what's been said. LIZ: Yeah. And I would also, I just hate this, but I'm going to mention it, car parking. Just allow plenty of time because at our hospital you can queue for 40 minutes sometimes to get in the car park. And that adds to the stress if you're running late. So make sure you get there in plenty of time. And I guess for me, the bottom line is as well, I'm not a cancer nurse by background, I'm respiratory. And I remember how anxious I was going to observe my first cancer clinic. Cause I thought it was nothing like I thought it was going to be. Louise: ⁓ yes. Yeah. Yes, yeah. LIZ: And you'll soon become familiar, the fear of the unknown sometimes worse than the actual experience of it. Once you get there, you'll soon get to know people. We become friendly, familiar faces and we look out for you as much as you look for us. And, you know, it's never anywhere near as bad as what you think it's going to be. And if you don't understand something, ask, because we do sometimes slip into jargon in technical terms accidentally. And if we do, it doesn't matter whether it's Louise: Mm. Absolutely. Yeah, yeah. LIZ: some high fluting professor sitting in front of you or a trainee doctor, it's your consultation to own it and just say to them, know, didn't understand that. Can you please explain really? Louise: And also if you're lucky enough to have a mesothelioma UK nurse in the clinic appointment with you or a lung cancer nurse specialist or another nurse specialist, you know, it may be that you have the opportunity after that appointment just to clarify anything after you've finished with the doctor that, ⁓ you know, you didn't understand or you want more information on, you know, that's something that I regularly do with patients and families. LIZ: Yeah. Louise: as we're taking them out of the appointment. LIZ: And so just moving on from that then, another question is people will often say, what treatment am I going to be offered? And will I have a choice about treatment? And that's another common question that our nurses ask. How would you respond to that Louise? Louise: I think ⁓ there are choices of treatments available to us ⁓ with patients who have got mesothelioma. ⁓ Initially, most patients throughout the country will have had their individual case discussed at a multidisciplinary team meeting. And that's where a group of health care professionals come together to talk about scans, biopsy results. ⁓ and what the best treatment options they feel are suitable for that particular individual. And that generally will have happened before the clinic appointment. So that when people come for the clinic appointment, the doctors will discuss what the healthcare professionals feel are the best treatment choices at that time for that person. ⁓ Currently, we have available immunotherapy. which is a drug-based treatment. We have chemotherapy, is another drug-based treatment. We have radiotherapy. And quite often, we have the opportunity to take part in clinical trials. So there are various types of treatment that you'll be offered, depending on where you are in your mesothelioma journey. But one of the key things around being able to offer treatment is is based around fitness, which I think we're going to discuss in a bit more detail later on. But also, individuals have a right to decide not to have any treatment if that's their choice. And we will discuss that with them if that's the way they feel. LIZ: Yeah. I mean, ultimately, that's the thing, isn't it? That treatment in mesothelioma is not curative. And sometimes people may decide that they, you know, on balance, they've listened to everything we've said, and that's, you know, their choice. So I guess that is the extension of this question is, do they have a choice about the treatment that they have? You know, if they might be suitable for no treatment, radiotherapy, chemotherapy, do they have a choice in which treatment they want to have? Louise: ⁓ huh. Yeah? I think initially if somebody's newly diagnosed, we're guided by NHS guidelines, NICE guidelines that will sort of guide us to what we feel is the best treatment at that point in time. But throughout the journey, patients do have a choice and we will listen to their opinions, their feelings and discuss, sort of have an open discussion about what we feel is best for that person at that time. LIZ: guess what we always say as well to patients is that if you're not sure whether to proceed, then there's no major rush. Take your time, do more fact finding, seek more support ⁓ before you make a decision. And if you've got a major life event about to happen, I don't know, a family wedding or a new grandchild, you or something like that, and you just don't want to rock the family dynamics or you want then, you know, seek advice from your clinical team because Louise: Mm-hmm. LIZ: quite often we will support you and say, you know, just listen to what we've got to say and take a few weeks to make a decision. It's rarely an urgent requirement for you to make a decision about treatment. just bear that in mind as well. And what about for those people, Louise, who are not fit enough for treatment? So you mentioned there about fitness. How important is somebody's fitness level? and how does that influence whether or not they're going to have treatment. And then again, so how important is it? How does it influence? And then if they don't have treatment because they're not fit enough, what support will they get? Louise: Okay, so quite a lot of big question there is. First one. Yes, extremely important. We can't emphasize that enough. And there's a lot of research ⁓ that's been done to support the fact that fitness is the key. ⁓ You know, people all come to Clearing Mead and say, well, I'm in that. LIZ: yeah sorry first first one then okay first one is how important is fitness level Louise: mid eighties, I'm obviously too old to have treatment and we'll go no, because you're, you know, you're still out having walks every day, you're walking the dog, you're doing your shopping, you're doing all your housework, you're doing your gardening, you know, you're extremely fit. So we do assessments for fitness and to be able to cope with the treatment delivery itself and the side effects of that some of these treatments can ⁓ produce, the body has to be able to cope with that, going through that. So to be able to have treatment is somebody who would be sort of up and around doing their normal daily activities for at least half of the day. So that's sort of getting yourself washed and dressed, managing to go up and down stairs or a short walk around the house and gardens or around the block. doing your own shopping, doing your own cleaning, gardening, know, and your hobbies and interests and that sort of thing. And somebody who's at that level of fitness, then we would be able to offer treatment. For somebody who's some of those things are a bit more challenging, then we would have a discussion about suitability for treatment. Because it may not be the case that we go with immunotherapy or a certain treatment upfront, we could try a chemotherapy that was perhaps a little bit gentler, fewer side effects that somebody may cope with that way. And there are things that we can do to improve fitness as well. So that's the next question. I'll hold fire on that one. Yeah, so. LIZ: That's going to be my next question. Let me hold fire with that for just for a second. Hold fire. If someone's not going to be having treatment, then Louise, and how are they going to be supported by the hospital team if they're not having active treatment? What's the deal with that? Louise: So if someone's not having active treatment, which we see fairly regularly ⁓ for various reasons, we always, ⁓ we offer our ⁓ telephone numbers, contact details, and if they're not in an area where they get a mesothelioma support specialist nurse, then they may have a lung cancer specialist nurse ⁓ who would also keep in contact We offer advice and support. We will sign posts to other agencies that may help them. We'll be in regular contact with the GP to make sure that the GP services are supporting the patient and the family in the community. ⁓ We quite often do referrals to palliative care team who will help and support with symptom management. We offer support groups that people can attend to share. ⁓ and exchange experiences with other people in similar situation. And, you know, we have a, we have, we do have quite a lot of people that we are supporting in this way. And we'll ring us on a regular basis for advice and, you know, sort of, we just signpost to the appropriate agencies that they need to help and support them. But sort of talking, you know, to the healthcare professionals is key. because that way they will get the appropriate advice and support that they need. LIZ: Yeah, and I guess the key message is we're not ageist at all, are we? In oncology care and, you know, in drug treatment for cancer. And it really is about your fitness level and ability to cope with the treatment. And if you've decided not to have active treatment, we call it systemic anti-cancer treatment, SACS, if you decided not to have it at this moment in time, then the likelihood is we will still monitor your disease with regular scans to see how it's behaving. Louise: No, ⁓ god no. LIZ: because sometimes how the disease is behaving can influence your decision whether or not to go ahead with treatment or not. if somebody's fitness is poor and they're not suitable for treatment because their fitness level, what can we do or what can the patient do in their family? What can be done to really help build up their fitness level and their strength? How can we help them? Louise: Yeah. ⁓ So we would talk about sort of dietary ways to support. So increasing their calorie intake, increasing the protein intake to help build muscle, and sort of small regular meals. Because a lot of people who have got poor fitness, alongside it goes poor appetite. So they're only able to eat small amounts of meals or small volume. So it's about thinking about what they can add to that volume to increase the calories, but not increase the actual volume of food that they're trying to eat. And also encourage sort of getting up and about as much as you can. And sort of one thing I'm always saying to patients and their family members and carers is sort of carers tend to go into a caring mode whenever anybody's diagnosed with a cancer. you know, and whilst you want to be caring, you want to look after your loved one, that's, you know, completely understandable. But if, if when, say, for example, you're all sitting down, and somebody wants to drink, and the carer says, right, I'll get up and make it, then that's discouraging the person who's got the cancer from getting a little bit of exercise there. So, you know, take it in turns, but don't always sort of, you know, LIZ: Yep. Louise: wrap your your left one in cotton wool. LIZ: what I say do not wrap them in cotton wool because you're not doing them any favors and I often think I don't know about you Louise but when when I'm in clinic to a patient and I start to talk about their fitness level I don't think cancer patients I don't well any patients for that matter but because we work in cancer we kind of get a bit blinkered but I don't think they realize that the minute we invite someone into the consultation room we're assessing their fitness the minute they stand up and as they walk into our clinic room we are watching Louise: Yeah, yeah, that's it. Yeah, they walk in, yeah. LIZ: to see how well you cope walking into the clinic room. When we're asking you questions about what your hobbies are, what you do for a living, where do you live and your family dynamic, we are all the time looking to see how independent you are and how fit. I think it's only, even though we're doing that, it's for quite covertly done. And sometimes when we say to them, your fitness level is really important, this is why, it's only then they suddenly realize, oh, maybe I should be not. Louise: what you're doing. Mm-hmm. LIZ: you know, being sucked into this illness, I really do need to push myself. So I think just talking about, you know, the importance of fitness can sometimes be the boost that patients need. I'm gonna move us on. Thank you for that. And I want to ask you, you can think about it for a minute, because I've already got mine in my head about what question you get asked the most. And Louise: illness, yeah. Yeah? Yeah? Okay. LIZ: I've thought about this a lot. think over the years, the question that I have been asked the most is, why can't they just remove it? Why can't I just have, or why can't have a lung transplant? Why can't I have it just removed? And I think when they talk about, you why can't have a lung transplant or why can't have the lung removed? think whilst surgery is Louise: Mm-hmm. LIZ: an approach that's common in many cancers. We haven't refined that in mesothelioma and we haven't been able to find a surgical procedure that is curative. And transplant just doesn't happen in patients that have got cancer diagnosis anyway, because organs for transplant are few and far between and just replacing the organ with another one doesn't stop the spread of the cancer because cancer spreads via your bloodstream and your glands. So transplant is never going to happen. Louise: Mm-hmm. LIZ: and actually cutting it out and removing it. We're working on it. have been clinical trials in the past, but we haven't perfected a means to actually make that a cure. So that's how I tend to answer that. What about you? What's the most common question you think you get asked? And we've been around a few years between us. So we've had lots of questions asked us. Yeah. Louise: We have, yeah, yeah, yeah. think sort of one of the questions, there's two questions sort of that are very prevalent at the minute is that ⁓ a lot of the time when we're talking about treatment, a lot of people understand what chemotherapy is because chemotherapy has been around for a long time. And when we talk about immunotherapy, they don't necessarily understand what the differences between chemotherapy and immunotherapy are. So, I mean, that will be discussed in detail when you come to clinic appointments. But ⁓ in a quick nutshell, immunotherapy is a type of treatment that is asking your body's own immune system to recognise the cancer cells are there and they shouldn't be, and to remove the shield that the cancer's put up. to prevent the immune system destroying the cancer cells and the immunotherapy drugs work to help that. So it's your own body sort of ⁓ helping to fight the cancer with the help of the drugs. Whereas chemotherapy destroys cells as well as cancer cells and normal cells in your body. ⁓ So they do work in very different ways. They have different side effects ⁓ and they have, you know, but they're all sort of working to try and make the cancer stable for as long as we possibly can. LIZ: Yeah, so the difference between chemo and immunos is a common question. I guess another one as well is, can I fly? Can I still go on holiday abroad? Yes, you can. Only very occasionally do we have issues with that. And if we've got issues, we can do a test to assess your ability to fly. But generally speaking, yeah. Can I carry on working? And yes, you can. Go on, go ahead. Go ahead. No, go on. Louise: Yeah. Yeah, yeah, yeah. Yeah, we wouldn't generally advise. Sorry, sorry, button in there. I was going to say we wouldn't generally advise flying if they're on chemotherapy. ⁓ But yeah, in between treatments and yeah. LIZ: No, not why I'm actually, but generally after that chemo, can go on your holidays and ⁓ can I carry on driving? And yes, you can. There are a few rare situations where we don't advise flying. Can I carry on working? Yes, you can. So anyway, we'll probably come to more of them through these podcasts. So I'm gonna wrap this up now today. The last question that we're gonna ask at the end of every single podcast with whoever we interview. is what encouragement would you share to help ⁓ the Mesothelioma community move forward together? Forward together being the focus of the podcast. So what piece of advice would you give Louise to people to help us all move forward together? Louise: Yeah, and I think the main one for me is for patients and relatives to keep in contact with your specialist nurses. If you're lucky enough to have a Mesothelioma UK nurse, that's great because they're there with all the advice and support and information. They know what's going on across the whole of the UK with regards to treatments, changes in support network, clinical trials that are going on. So keep in touch with us. ⁓ And if you haven't got a mesothelioma UK nurse, then you will have a lung cancer nurse specialist or a Macmillan nurse specialist. Keep in touch with them. You know, we network with nurses throughout the UK and can make sure that you get all the advice and support. So keep talking to us. LIZ: And I would echo that. I think the charities real tour de force are our nurses. Our whole reason for being is to help and support people living with affected by meso. So I would echo that. But the other thing that I would say is, please tell your story to anyone that will listen because asbestos is the only real known cause of mesothelioma. It shouldn't be happening to people. And by telling your story, you might just prevent somebody else exposing themselves to asbestos inadvertently, doing home DIY or in a work environment. please, that will help us all move together forward together, I think, if you tell your story, it's powerful and it's worth hearing. So if you feel able to, please tell your story. So that's it for this first. podcast, I want to thank Louise, my lovely colleague, I'm so lucky that I work with Louise. And I'd like to finish the interview by saying that if you've got any questions at all, there's there's there's no silly question, there's no subject that we're not happy to cover. Then please get in touch with us. We'd be really glad to cover anything that might help you, your family or your friends in any way, shape or form because you know, as I said before, that's ⁓ our whole reason for being is to be here to support the Music Dilemma community. So thank you for listening and I hope you found this helpful. Goodbye.