Transcript Available Rebecca: How do you get on with life and still live well with a brain aneurysm or recovering from treatment? It's something a surprising number of people have to face and a topic we're exploring in today's episode. Welcome to Brain Aneurysms & Beyond with me Rebecca Middleton a brain aneurysm patient and the founder of Hereditary Brain Aneurysm Support. We're a UK charity supporting people with brain aneurysms, and their families. In each episode, we'll be discussing exciting research, remarkable stories and looking at the practical and clinical information surrounding our condition. To discuss how to live well with an unruptured aneurysm, I'm joined by... Fiona: Hi I'm Fiona Moss. I'm the director of the The Natalie Kate Moss Trust and we are a charity which focuses on the prevention and treatment of brain haemorrhages. Cat: So, I'm Cat Lamb, I'm a neurovascular nurse specialist. I work at the John Radcliffe Hospital in Oxford and I was involved because of some work I was doing with Rebecca and her team to highlight, unruptured brain aneurysms and the familial link. Rebecca: I started by asking Fiona to share more about her sister Natalie's story. Fiona: The charity is obviously called The Natalie Kate Moss Trust, named after Natalie, my sister, who unfortunately, back in 2011, had a brain haemorrhage at the age of 26. So before that she was absolutely fine, she was healthy, she was normal, she was like any 20 year old. And, unfortunately one day experienced a thunderclap headache, which is obviously a very common symptom of a brain haemorrhage, was rushed to hospital and after five days in intensive care, sadly passed away. And I think, obviously brain haemorrhages are very, very devastating. And obviously when they happen they really shake up communities, but particularly when they happen to somebody who's seemingly in the prime of their life and starting out she’d just moved to London and was just kind of really establishing herself and, it really shook up a lot of people, obviously our, family, our friends but the wider community as well everyone she went to school with, went to university with, and it really touched a lot of people's lives. And I remember my mum vividly saying to me at one point we need to make sure that this isn't in vain and something good comes out of this because obviously it really tore our family apart in many ways individually, and probably collectively as well changes the structure of us as a family unit. And so we set up The Natalie Kate Moss Trust and we reached out to the University of Manchester initially because she was an alumna of the university and initially it wasn't really meant to be a huge charity or anything that was as big as it is now so to speak. And we reached out to university and just said is there anything that we can support? Is there any way that we can channel our energies and create some good out of obviously a very dark situation. And having a conversation with the research team at that point there wasn't really any research being done into treatment after a hemorrhagic stroke, obviously a brain haemorrhage being a subtype of stroke. And so we donated a really humble amount of money at the beginning which is around £12,000 which in research terms is a very small amount of money. But what that meant was that they could formulate a research project, use that initial research project to leverage funds from other sources. And we continue to fund them over what has been now the last 13 years. They've obviously been able to use the funding that we've given them leverage funds from other areas each year and subsequently they've grown their team from initially there was only one PhD student working on that project to now 30 plus researchers. And they've developed a centre of excellence for brain research which is called the Geoffrey Jefferson Brain Research Centre centred in Manchester as well. Rebecca: And now in her memory you have established the charity and working really hard to drive home the message about how important it is to manage your blood pressure and you're going into the community. Tell us more about those campaigns and the impact you're making. Fiona: I think the piece around blood pressure to me when it first came up in a conversation with the university and we were like that is something that people can be doing to help prevent brain haemorrhages. It seems like an absolute no-brainer. It seemed confusing to me that this is not a more common message that's pushed - it is pushed but to older people to people who seemingly are the ones at risk of having high blood pressure. But the truth is actually a third of the population has high blood pressure and 50% of those people are undiagnosed. And they're undiagnosed because high blood pressure shows no symptoms. But also you can have high blood pressure even if you're not overweight, not super stressed, not eating terrible food, not drinking all the time. Even though lifestyle factors are a major contributor to high blood pressure you can still have high blood pressure even if you are seemingly perfectly fit and well and healthy. And I think the problem is as well that we're not educated on this topic enough. We all know roughly we get our blood pressure check when we go to the GP, but do we really know what that means? Do we know what the numbers mean? Do we know what the risks are if you have high blood pressure? And that's what we're trying to do is spread that message and spread that education to make more people understand the importance of checking their blood pressure and if it is high, what they can do about it. Because as I said before, it is very modifiable. You can either, hopefully manage it through lifestyle, but also there's a lot of very good medications out there now which can help to manage your blood pressure, which have very few side effects. But we're also wanting to speak to younger generations as well, because the age group between 16 and 35 have the highest percentage of undiagnosed cases proportionally to the number of cases. Because we're not talking to younger generations. It's never seen as a young person's thing, it's always seen as an old person's problem. But the more people we can talk to earlier, the more habits that they can create as they move through life. And they're already managing their blood pressure so that they're not catching it too late. Because high blood pressure over time can cause damage to blood vessels and weaken them over time as well. So we are going into schools and we are creating a programme to go into the PSHE curriculum to talk to children about it at an earlier age. And I think this is particularly important as well because, twice as many children now have high blood pressure than they did at the turn of the millennium, and that's largely due to childhood obesity as well. So it's really important that we start pulling everything together. The importance of lifestyle, but also the effect that that's having then on children's blood pressure as well. Thank you, Fiona. And as you said, blood pressure often presents no symptoms and indeed, brain aneurysms also present no symptoms and are more common than we think with an estimated 1 in 30 of people having one. And the vast majority of them don't know but often people do know whether that diagnosis has come about because of a strong family history or an incidental finding, or indeed they are recovering post-rupture as well. So there are many paths and many journeys. Rebecca: Cat, if I could come to you next and thank you for being patient, I wanted to ask you about blood pressure and I wanted to ask you about the types of questions that you get in clinic about blood pressure. Because it is so critically important for those people with brain aneurysms, either post-rupture or unruptured, how do you help manage blood pressure in clinic? Cat: So, if we're talking about unruptured aneurysms, so if they come in and they've got a family history, then I run that clinic, for patients. So they'll get referred in from either their GP or from other clinicians at different hospitals. And they really want to know at that point, what are my risks of having an aneurysm because of my family history. Sometimes they want to know what can I do to prevent having an aneurysm. So that would link in with things like blood pressure, other modifiable things like not smoking, not having recreational drugs, just having a general healthy sort of diet. Sometimes they also want to know they're not just their risks, but their children's risks. So if they are coming, then what about my two daughters? Do I need to think about them? So we talk about that a lot, and the time frame. So the anxiety levels, I think, are certainly higher if, say, somebody is in their 30s and they've had a ruptured aneurysm and they've been referred in and they're in their 30s they'll start sort of linking it together and they'll want to sort of have some answers as in, my risks of having an aneurysm at the same sort of time frame as their family member. If they have ruptured and they come because I run different clinics, so if they've had something we called a subarachnoid haemorrhage which is that rare type of stroke then we'll talk about ongoing risk factors. So things like blood pressure management, smoking cessation, just generally modifying and ensuring you've got a healthy lifestyle, but also talking to them about their risks being quite small as well of things happening and just to kind of try and keep things less anxious for them at that particular time. And generally at the end of the clinic for the unruptured or the family history ones, so we don't know if they have an aneurysm, we'll talk about screening, we'll talk about the pros and cons of screening, but usually at the end of that conversation their anxiety levels have definitely come down. Although I don't have any patient reported outcome measures at the moment, it's something I've certainly looked towards getting to see whether having those discussions do help with you making those healthier choices. Rebecca: Thank you, Cat. That's really important and that's really important to say that people with different experiences of their aneurysm will be in different places in their journey and will have different sort of questions and questions when they come to you and they come to clinic. And from our recent patient survey we also learned from patient experience and they told us that it was sometimes a struggle to find the answers to those everyday questions, to find that reliable information and advice as well. And that's why at, HBA Support, we've put together a new lifestyle guide to help people with those everyday questions. What are the type everyday questions you get whether that's driving or can I still drink or what about smoking? What are those kind of questions that you get in clinic and the advice that you give? So if they are unruptured, as in we found that they have an aneurysm, so that's after the clinic I first hold. So the first clinic is obviously with myself and we talk about the risks of scanning and their risks of having an aneurysm. Then we do a scan we find out they have an aneurysm. Then that will prompt another clinic appointment and that will be with a neurosurgeon and myself or an interventional neuroradiologist, and myself. And we then talk about, what is the size of what we found firstly and what is it that we found and what is an aneurysm? And talk through that in particular. And then it would be really the risks of bleeding throughout their lifetime or five year risk. And that will then kind of feed into any treatment options on the back of that, yes we're talking about healthy lifestyle. So definitely blood pressure, making sure that that's kept a check on, staying active safely as long as people can exercise, taking care of their blood vessels themselves. So by eating healthily, making some sort of changes to diet, managing stress, sleeping well and avoiding those risky things like smoking, excess alcohol, recreational drugs, things like that. And they're really open and honest conversations that we have when we're in clinic. And I think they're important to have so if they're being referred in, I think it's really important that they talk to their own family members as well and talk about their own risks as a family, to then maybe trigger that appointment happening in the first place, them getting referred to someone like myself or to a neurosurgeon to have a talk about their risks of having a cerebral aneurysm in the first place. I've met many patients who have got all the risk factors in the world. They've got all the family risk factors, and they're like, no, I don't want to know. Thanks very much. I just want to live my life. And that's fine. It's all a personal choice, isn't it? As long as they're informed and people are aware. But it's like Fiona said, it's younger people getting to them, getting to them early to make sure that any lifestyle factors can be sort of changed. Talking about it, you talk to many people and they're like, I have no clue about this type of bleed as well. Until it happens to them. And then suddenly people come out the woodwork of like, oh, yes, it happened to this person. So it's happening, but no one talks about it. Rebecca: No, absolutely, absolutely. It often goes unreported in families, as it did in my family as well. And I suppose after my diagnosis, I was keen to learn how I could be proactive, as you say many younger people are getting a diagnosis now, whether that's family history or indeed an incidental findings. And I think it's important that we arm people with the information that they can take proactive steps, that they can guard their health by eating healthily, by staying active, by managing their blood pressure as well. But also, when I was diagnosed, I had questions about driving and flying and, you know, you go back and you you make sure that you you feel okay about your diagnosis and let all of that information sink in, and then you go, okay, but I have to carry on with my life now, so what does that mean for my everyday life? Do you often get patients coming back to you with supplementary questions saying, well, what about this, Cat? And can I go on a roller coaster or can I go flying? Can I go scuba diving? Do you get those kind of questions? I suppose for me as well again, as a patient, is it okay to do that? Because we know you guys are really busy. Is it okay to send you an email, give you a call and say, you know, what about this? I'm thinking of doing this. Is this safe? Cat: So generally, if somebody has had an aneurysm treated and they'll be linked in with us then, so they will always have our contact details and they can, you know, dip in and out and get information from us. But if patients are, met by us in the hospitals, then we will always give them information about driving. So when to notify the DVLA, when not, because you don't need to all of the time. It's about driving on clinical recovery. If they've had a bleed, also, it's very, very individual. Going on roller coasters is definitely one I've had quite a few times. And as long as they're not on dual antiplatelets, which are drugs which thin your blood then we say it's fine. And contact sports is a no no if they're on things that thin their blood, they're the only things really we would say no to. Other than that, you know, driving is fine. Getting on an aeroplane is absolutely fine. We just suggest that they have travel insurance. We're getting lots of questions at the moment with patients who have been treated, who are, asking, about the weight loss jabs, and wanting to know if they can have those, if they're safe. And we're like, we don't really have much evidence, but, you know, it's about a risk/benefit discussion with whoever your prescriber is. Rebecca: Fiona, when you go talking to people on the street, when you go into workplaces, what kind of advice do you give in terms of how to manage, how to take those active steps to lower your blood pressure? Fiona: I have a slide that I always pre-empt when it comes up to say to people, I know you're adults and I know you understand this, but, you know, at the end of the day, sometimes it's the really basic things, sometimes we want the complicated answer, don't we? But actually, the things we need to do are look after ourselves, manage our weight, eat normal, healthy food, not overly processed, not full of salt, not full of sugars or artificial preservatives, you know, doing some exercise, not drinking too much alcohol, not smoking, managing stress, sleeping. It's kind of the things that we hear all the time. But I think in our modern society, it's very, very easy to kind of not, not kind of tick those things off in the way that we should do. You know, it's very easy to be stressed. And whether that's massive stresses or micro stresses, as I talk to people about, and that could be, you know, being late for work and getting a bit stressed or emails coming through or something coming up on the news. And every single time it's adrenaline and cortisol coming into your body. You know, it's very easy to get swept up into going to drinks and having a party here and a party there, and our lives are very busy and then we don't sleep and then we eat, you know, not great food, and we just kind of pass it off, don't we that we just go, oh, it's fine, I'll figure it out next week. And actually, sometimes we just need to slow down. We just need to get good sleep. You know, when we get good sleep, actually, I think that's the bedrock and the foundation for the rest of it, because once you sleep well, you feel good, so you're probably going to eat better, you're probably going to do the exercise, you might not be as stressed, because you're not stressed you might not have a drink etc. So, it's just about tweaking some of those things. And sometimes it is just a tweak. It's not always that we have to suddenly become a monk. And one of our trustees is an expert in hypertension and he will say this over and over again. It's not about shutting the door and sleeping 10 hours a night and meditating for most of the day and only eating seeds and fruit. It's about, moderation. And I think it also is about just starting with, when we're talking about blood pressure in particular, taking your measurement and going, you know what is my situation now? And do I need to make any adjustments in order to better manage my blood pressure? Rebecca: Yeah, absolutely. And very much a message echoed in our guide that those simple changes done consistently really can make a difference to your health and also make a difference to somebody who is living with the worry of an aneurysm, that they can take proactive steps and they can actually manage their health, as well. Thank you for sharing all of that. That's been really fascinating. Cat, to come over back to you. I mean, obviously we've been talking about people with unruptured aneurysms, but what about people with ruptured aneurysms? They too can take proactive steps in terms of keeping that blood pressure low and managing their health there. They must have different questions as well. What's your kind of top advice, to that community of patients? Cat: So in the follow up clinic that we have with our patients who have ruptured, a lot of the time, obviously when they're in the hospital, we're talking to them about any changes that they can make, their risks of this event happening again and those things. And what I'm finding a lot is that I’ll do clinic with somebody, they'll forget of the horrific time that they had in hospital, how unwell they were and how close to death that they were. It's a very, very serious condition that happens and they've reverted back to smoking or they've reverted back to other unhealthy sort of lifestyles. And it's really difficult because like Fiona said that adults and you know, you can't lecture people about it, you can just give them information. But inside I'm like, oh, I'm so frustrated. And it's so disappointing because you think how unwell you were and how you've recovered and you've recovered really well, but then you've just slipped back into those old habits which it's easy to do, I know. And then the next question they will say is, but I'm really worried about this happening again. And that then opens the door for a great conversation then of you know what you can do then, don't you to help prevent this happening again. Let's talk about your smoking or let's talk about you not taking your blood pressure medication or you know, they were asked to get their blood pressure checked with their GP maybe when they left the hospital and they haven't done it yet, or you know, maybe they couldn't get an appointment. But it's those kinds of things they want to know, can they have a little bit of alcohol? It's, absolutely fine. In moderation, anything is fine. The only big no nos, I'd say is like smoking and leaving your blood pressure unmanaged. Certainly because it has risks to the aneurysm that has been treated. Not only that, but also the development of ones in the future. Rebecca: And do you think that also kind of fear around the blood pressure numbers also prevents some people from taking a regular reading? I know myself because I went through pregnancy with an unruptured aneurysm, and therefore blood pressure was very, very important to me. I know that I have white coat syndrome now. I know that every time I see that blood pressure monitor, my blood pressure is going up regardless, just because I'm so worried about what the numbers are going to say. Do you think there's a little bit of that as well? Have you come across that in clinic, Cat, that people are worried about their numbers? Cat: I think some of the time they don't understand the numbers and they just say, oh, well, my so and so said it was fine, so that's okay, you know. And, our advice is that if your blood pressure is stable, then why not use that as a six monthly or yearly check. Use that time as a, right, I'm going to put this on the calendar and I'm going to get it checked, you know, this time or every time you're in the chemist or something, you know, if you're passing by one of those stands which says free blood pressure check, just get it checked and you can see what it's like then at different times, because you're right, people do have that white coat syndrome and their blood pressure will go sky high regardless of all the calming measures you can say of, okay, but I think education about it is really important. Educating what's normal for you, what's normal for someone else, knowing that blood pressure will fluctuate, it doesn't say the same reading the whole time. So that's important. People know that it will fluctuate, it will change. Rebecca: And Fiona, you have a really useful monthly reminder email that you send to people on your mailing list, which I get regularly. And it does go, oh, yes, I must. I must check my numbers. That is really, really, really valuable. Can you just share more about that in case people want to sign up? Fiona: Yeah, absolutely. I mean, I think one of the biggest things is, like, as we've already mentioned, is, that because it has no symptoms it's a very easy thing to forget to do. And unless, like Cat says you're walking past and you see a sign that triggers that there's got to be something, like anything, there's got to be something that triggers a reminder. And so we say to people, you know, put it in your diary. You know, the amount of stuff that we all put in our diary and that could be I had to go to the mechanic this morning that was in my diary. You know, you pick up the dry cleaning and whatever. And this is so important, it’s potentially life-saving. And so we encourage people to, in whatever way that they can remember to check their blood pressure. And we do say it doesn't have to be done every month and I'm sure Cat would attest to that but I think a month is just a really round number and it's a really easy way for us to remember to do it. And so we, we often, and a lot of us will do stuff periodically and that's quite often every month. And as women, you know, we're encouraged to check our breasts every month. So why not, you know, stack on top of that, checking your blood pressure as well and do a little monthly check. And with the blood pressure it takes 40 seconds to test. So it is really something that you can very easily do every month if you've got a monitor at home as well. That also makes it so, so simple to do. But actually what we've recognised is a lot of people don't remember to do it, don't put it in their diary, etc, so having a simple monthly reminder service, we've recognised that, that, you know, we've had a lot of good feedback similar to that of what you've just said, Rebecca. People just, just that very simple thing of going oh, yeah, I need to do that. Rebecca: Thank you, Fiona, and thank you, Cat. And just another shout out for our lifestyle guide which you can find on our website, hbasupport.org, which has lots more information and practical information and practical advice about how to live well with an unruptured aneurysm and take active steps to manage your health. And I'd like to say a big thank you to Professor Diederik Bulters who helped put that together for us. So a special thank you to Diederik. And before we go, I'd like to come to you both, on one takeaway that you would like our listeners to really remember about today's chat, which has been so valuable and so useful. Fiona, I should imagine it's going to be about blood pressure for you. Fiona: I would just say really kind of start getting into habit of checking your blood pressure and measure it and track it as well. You know, we spoke about how your blood pressure can vary in different situations. And you can have white coat syndrome in different situations. You could also just be, your blood pressure could be up for whatever reason you might be running around. You might be particularly stressed that day and just keep on top of what it is. The more you test it, the more you can get a bit of an average too. We always say, particularly for those people with iPhones and I'm probably sure on other phones as well, when you go on your health apps, there's all these ways that you can measure it now and log it too. So, yeah, just log it, be on top of it. And if you are ever worried about it, my recommendation to anyone I speak to is don't put your head in the sand. Like you're saying, Rebecca, someone says, oh, somebody else said, that's fine. Don't, don't kind of like try and justify if it is high. Just go and speak to somebody. There is never a silly question, I think, around blood pressure. Get it seen to. Rebecca: Thank you, Fiona. And over to you, Cat. For somebody with an unruptured brain aneurysm what’s that one piece of lifestyle advice or steps they can take to stay healthy and live well, live positively and live well. Cat: Well, I mean, the title of this podcast is really apt, isn't it? It's about facts and not fear. So just having all the facts in front of you about how you can change those risk factors that you have and ensuring that you are sort of moving from a, state of fear when you're first referred to being more in control, I think, of what can happen, you know, what the next steps will be if you can modify things. So, yeah, just also start small. If you do smoke and you know that you need to give up smoking, then we sometimes will or one of our lovely consultants, he will always say, take a cigarette out of the packet each week, you know, and just take one out each week and eventually you'll be reducing without even knowing it, rather than you just got to stop now. It's about what works for that person. Rebecca: Many thanks to Fiona Moss and Cat Lamb for sharing their knowledge and their experiences. And many thanks to our producer Rob Birnie too. For more resources and updates, do follow us on Facebook, Instagram and, LinkedIn. And if you found today's episode helpful, please take a moment to follow, subscribe and share it with somebody who might benefit. Every listen helps us make a bigger impact and reach more people. And finally, for our lifestyle guide, take a look at our website, hbasupport.org. Thank you for joining us, and until next time.

Transcript Available Uncertainty, anxiety and confusion. Words we hear all the time from our community. Those living with an unruptured brain aneurysm and those who have survived a brain haemorrhage. But how do we build resilience? How do we learn to live with worry every day? Welcome to Brain Aneurysms & Beyond with me, Rebecca Middleton a brain aneurysm patient and the founder of Hereditary Brain Aneurysm Support. We're a UK charity supporting patients with brain aneurysms and their families. In each episode we'll delve into exciting research, share remarkable stories and look at the clinical and medical information surrounding our condition. To help us understand how to build resilience and how to learn to live with worry, I spoke to psychotherapist Kym Winter, UK founder and clinical director of Rareminds. I started by sharing a little bit about my journey. I was diagnosed with an aneurysm round about 10 years ago. And, I underwent screening for an aneurysm because my grandmother and my mother both died of an aneurysm. So when I was told on that dark, wet Friday evening that I too had an aneurysm, I was immediately full with worry and fear because in my family I thought that aneurysms meant death and tragic consequences. Fast forward a number of years when eventually it was decided that my aneurysm was the right size and shape and it was time to get it treated. And I underwent brain surgery around about six years ago. I was delighted that the surgery went well but I was also delighted that I turned around the narrative in my family. So from aneurysms meaning death now aneurysms meant life and moving forward. But through that journey, I lived with different levels of anxiety and worry and fear for myself, but also for my daughters and for my family as well. So, Kym, to start us off, and it's a big question, how can you live well with worry? And is it possible to balance it in our lives, to find that balance and to find a way of moving forward and cracking on with daily life while still dealing with something which is very troublesome in the background. Thank you, Rebecca. It's a great question to lead on, of course, and it is a big question. I think your experience of your journey is in some ways quite a good reference point for other people in that, in my experience, and we talk to lots of people living with lots of different rare conditions, but they all have a similar theme of how do you live with uncertainty and fear and worry over time. I think there are no easy answers to this, but there is often a different relationship that you develop to worry and uncertainty and fear over the course of your experience of living with a condition and I think, you know, you referenced yourself when you were first diagnosed with it, there was a huge amount of worry on your part. You were sort of consumed. And I think often, you know, people are overwhelmed by fear and worry in the early stages and that can be a really testing period. But it's not unusual. And I think it's really helpful for people in the early stages to know that that fear and worry often abates over time. And it abates for a number of reasons, really. One is, is that you sort of get used to the information you've been given. You know, I think you sort of described it more like it sort of crashed in. You know, even though you prepared for it and you'd thought about it a lot and you thought about going for testing and screening, it still can feel quite overwhelming in the early days. And I think in those early days in particular, it's really helpful to remember to treat yourself gently. You're taking on board a huge amount of information and you're doing a huge amount of emotional processing along with the information you're processing. So feeling quite overwhelmed is because you are quite overwhelmed. You know, there is a lot happening in those early days and you'll be making new relationships with new healthcare professionals and working out what it's all about. What is this going to mean? What's the path going to be going forward in terms of screening and being looked after by the healthcare professionals involved in your care? So I think those early days are often very full of fear and worry. I often think it's a bit like a wave breaking. It's a bit like a sort of a wave crashes over you and then if you think of the sort of waves on the beach, they sort of become a little bit calmer over time. We also sort of develop, in my experience, a phrase we use quite a lot with people is we sort of develop psychological muscles for uncertainty. You know, we're often feeling like, I don't know how to do this, I don't know how to cope with living with this condition or what it might mean for me over time. And we sort of feel quite overwhelmed or weedy in the face of it, but actually, as time progresses, we sort of develop stronger psychological muscles for knowing how to sort of roll with the fact of it in your life. You can sort of lift it in a way that it feels just less heavy than it does in the early days. So often we say to people you will develop muscles for uncertainty over time, but it doesn't happen overnight. It's a bit like going to the gym. You sort of learn to develop those muscles, and to some extent you learn to develop those muscles by kind of little exercises and strategies and techniques to look after yourself along the way. And then you find they become a bit second nature. And one of the things I often think is so helpful with worry in particular, is asking yourself the question, quite pragmatically, is this a worry I can do something about? Is it an informative worry? If, for example, I'm worrying about not going to the gym because I'm worried about my health in the longer term, that's sort of a helpful worry because it reminds me I might need to go to the gym. So there's a helpful worry that I can take action on or not. You know, I might be worried I should be booking an appointment, but I haven't done it yet. That's a sort of helpful worry to spur us into action, to look after ourselves. More unhelpful, worries are those sort of niggling ones that often happen late at night or there are no clear or straightforward actions that you can take to manage them. They're often the sort of what if worries. Yeah, what if. And they don't have easy, straightforward solutions or ways to manage. And I think when we're in the face of sort of those what if worries, often it's about how we look after ourselves and how we find ways to let those thoughts sort of pass, you know, to move on. Because if they get their grip on us, we can feel quite overwhelmed they can be very preoccupying and anxiety starts to build and we can get very fearful. So sometimes we say to people, when you're in the grip of those what if worries, or the sort of unhelpful worries that don't have an obvious, you know, solution to them or action you can take, there's a number of simple things you can do. One I really like in my own life, because it's such a simple metaphor, is the idea of putting the worry on the shelf. It's quite literally shelving your worry. So it's the idea of imagining the thing that you're worried about and saying, I cannot do anything about this. It is outside of my control. And you imagine putting that thought worry in a box, closing the box and putting it very carefully in your mind on a shelf nearby and saying, that shelf can hold my worry. It'll be there for me if I want to pick it up again at another point, but I need to put it down, right now and then doing something else. Sort of distract yourself or get on with your life or do a sort of relaxation exercise to help you get back to sleep. But sometimes it's that idea of our, worries are trying to help us out, but sometimes they slightly overplay their hand. So trying to sort of keep them safe and put them down somewhere can be really, really helpful in the short term. But I think, you know, one of the things that's really important, if anyone's listening to this and feeling a bit tired out by worrying or feeling very in the grip of anxiety, you're not on your own with those sorts of struggles, and there are other people around who for whom that sort of struggle will be very familiar to them too. And I know HBA, you have sort of support groups and ways of linking up, because often we need to know that other people get it too. It's a bit like when someone says to us, yeah, no, I get that. I really understand what you're going through there. Somehow that helps us feel a bit calmer too. We're not odd, we're not on our own. It's sort of yeah, yeah, we get it, we get it. It's not easy, but there are ways over time where it feels easier, but it does take time sometimes. Does that resonate with you? Yeah, no, absolutely. And especially that, you know, you're not alone. When I went looking for information, you know, did those 3:00am Google searches, which, you know, you shouldn't do. Yes, absolutely. When you just been diagnosed, you're after that I don't know, that kernel information that will appease you, reassure you or inform you but you're also desperately trying to find somebody like you. And, that was one of the reasons actually why I set up HBA, because I knew that there were other people like me. I just struggled to find them. And it was fantastic when I started connecting with other people on different Facebook groups, as well to kind of, yeah, realise that I wasn't alone and also that they understood what I was going through. Because it also feels a very lonely journey. Sometimes. You can talk to families, you can talk to friends, and of course they're really great and they try and understand what you're going through, but it is a journey. You know how I felt that shock, as you say, that wave when I just felt that wave over me and I was just collapsed in a heap when I was trying to process that, you know, you struggle up, back on your feet and then you learn to kind of walk again. But you, you are living with this kind of the knowledge. And also that reassurance. People, you know, like I say to, to kind of different people in our community now, it's something that you will learn to live with and having that trust that you do have, that capacity and that resilience that you will get there, it seems overwhelming now, but that's not where you're going to be next year or the year after or the year after. And, this journey is so different and unique for all patients and all families. And I also suppose because of what aneurysms can mean in your family for me, it meant tragedy, the tragic loss of my grandmother and my mother. So, again, changing that narrative, or if you're not able to change that narrative, learning about other stories. And that's, again, what we are really excited to do at HBA is bring other people's stories. So you can go, yes, you can live well with an aneurysm. It can be very safely treated and you can move forward, as well. But you can't believe what you can't see so we're very much trying to bring different experiences and stories. But as you say it's a complete journey of diagnosis through sometimes watch and wait, sometimes it's a treatment and then post-treatment, how you kind of again move forward with your life. But that journey perhaps sometimes will very often start with screening. And, that is a big sort of crossroads, really. People's lives if they are aware they have a family history and maybe they've been offered screening or they are, interested in speaking to their GP about screening. It's not an easy decision to make, of course. Once you know, then you can't unknow. And again, that's a question that we get quite often is what's the right choice for me? And there is no right choice. It's what's right for you at that time. So what are your kind of top tips or how can people work through what is a really tricky question of should I undergo screening and can I handle those consequences perhaps? Yeah. I think you're saying something really important, which is people come to the idea of screening at, different times and in different ways and feeling I mean, feeling ready for screening is sort of a I'm not sure you ever feel quite ready for screening, but perhaps it feels that you want to take that step at one point in your life that you might not have done at another. And I know sometimes when we talk to people, it's sometimes helpful to walk up to the idea of screening, find out what it would mean, what it's about, what it would involve. And sometimes people feel able to take that step quite quickly. Depends what you're like. You know, some people like, yes, I definitely want to know. Others need to sort of come round to the idea. And it might take a long time, some people need to walk up to it for a bit and then walk away from it again. And I think the thing with screening where over time, there's not many people that we have seen through our doors at Rare Mind who have regretted, let's say, going through a screening process, it's a very big thing to do. But of course, once you do know you are in a position to be on a pathway to have particular care or support or make particular decisions about your life or your future, that can feel quite empowering. But I think that process of screening, I often say to people, unless there's a very good medical reason why there is an urgency there, it can be very helpful to walk up to it, take your time, pause, come back to it again, because it's important to do it at the right time for you as an individual. And that's everyone we're all very different in that regard, aren't we? Some people like to know up front very quickly. Others need to sort of get your head around it a bit more, kind of work up to it. So I think timing is very important and talking to people that, who know you, you know, as well as medical professionals, talk about it as a decision that you're considering. What do they think? Gather information from them and then make your decision when you feel ready. I'm curious to know whether it was a difficult decision for you or whether it was something that you felt actually I want to do, but it's about the time or? Yeah I was determined that I wanted to know. There was another motivation there that I was considering extending our family. So trying for another baby. So it's like, oh, perhaps I should know before we go on that kind of journey. But my genetic counsellor and my neurosurgeon spent a lot of time, what happens if there is an aneurysm? Hopefully there won't be, but what happens if there is? And, this is what the pathway would look like. How do you feel about that? So that was really useful for me because it's kind of seeing over the wall. And you know, could I, could I cope with what's over the wall? And once I did get that diagnosis, perhaps didn't come as a great shock, but it still comes as a shock. You know it's a hereditary condition. So it shouldn't be a huge surprise that I had it. But at the same time it was, as you say, that wave hitting me. And then just a matter is, as you say, that everybody's care pathway from that point on looks a bit different. And I was on that kind of the watch and wait pathway. But ultimately screening saved my life. Ultimately, screening is why I'm here today. Because if I wasn't screened, then my growing aneurysm perhaps wouldn't have had the treatment. I was in and out of hospital within 48 hours and back at work the next week. I am very grateful for my care, I'm very grateful for my, my screening, but also have other members of my family who've said, no, don't want to know. Yeah, you know, that's why we always say it's absolutely fine. There is no right or wrong answer. It's just your answer, your answer for where, where you are and other people, perhaps because we had been through a tragic set of circumstances, as you say, needed that time, needed to kind of walk away, process what they were going through with the kind of grief and then walk back to it. And, at a later stage when they felt sort of emotionally stronger to, to deal with whatever may come their way. So I think that's a really good tip that there is no rush unless there is a huge medical need to take your time. And, and as you say, I like that I, that analogy of walking up to it, having a bit of a look, walking back and then going back again. And it's okay to change your mind. You know, sometimes we talk to people in this that I've really not wanted to go for testing. That's not for me. I just want to sort of see what happens and, and then there comes a point where something changes and people go, actually, I think I might want to, but I've said I firmly don't want to. And now I seem to be changing my mind. That's all right as well. That's, you know, that's what we're like as people, isn't it? We can change our mind about things. I think it's difficult. You're touching on something too, within families that can be challenging as well, when perhaps, I don't know, one sibling may want to go for testing and another may not. And how you rub along together with that, different decision making can sometimes feel attention, I think. And it's back to that idea too, of, of we're all different and we all make different decisions about our lives at different times. But, you know, I'm just sort of noticing and speaking to the fact that we're aware, sometimes it can cause tensions between people too, if one wants to go ahead. Yes, it can cause tensions and worry. And that's one of the questions that we also get a lot from the community is adults worried about children, or perhaps the other members of their family. Now, in the NHS, screening is because it's an adult onset condition and, luckily, very, very, very, very, very, very rare in children, which is great to hear, but it just means then that screening isn't available until you are in your adulthood and usually sort of over 18 and well into your 20s is when it's advised. But then how can we as parents, you know, certainly it's something that I do every day. You know, I look at my two daughters. Familial aneurysms often run through maternal lines that they have done in my family. So I look at my daughters and go, gosh, you know, is this pattern going to continue? How do you live with that kind of worry as well? And again, I suppose from my perspective, it's something that I have had to go on the shelf with you. But, you know, it does creep back, those 3am thoughts. Inevitably, it does. Yerah and I think, again, there's no easy solutions to this one, Rebecca. You know, you're talking about something that is a challenge, you know, that you, you know, there's a possibility that your children may inherit the condition and you know, too, that there's not sort of testing or screening available for that until much older. It's back to that kind of, is this a worry I can do something about or is this a worry I have to put down? And sort of trying to find that psychological flexibility within yourself, really, the thoughts will visit as you know, the thoughts will come up. What if, you know, oh, gosh, I. I hope not. Or this makes me feel very sad or guilty if this is going to be part of their life going forward. I have a couple of thoughts about that, which is one is young people are incredibly resilient. We often forget that when we hear so much about young people's mental health and, you know, all that. But often young people are very resilient and you are doing something very powerful by modelling to them, as their parent, that you can live well with this condition, that you engage with health care, that you've had surgery, that you are getting on with your life. It is part of your life, it is not all of your life. And, that's a very helpful message for your children to witness and our children to witness going forward, that we can live with very difficult conditions that may impact us over time, but care is available, medical support is out there and life carries on. It's a very it's a way of trying to remind yourself of that too when you're in the grip of a sadness, a worry or an anxiety about their future or their health, that actually you're doing it, you're getting on with it, they will find their own ways of doing it too. And of course their experience is going to be different to yours. You know, you are, you are living with your condition. There is not a loss that they will be facing in quite the same way that you face the loss of your, your mum and your grandmother. So I think, also trying to reassure yourself that with very many conditions, care and medical support is improving all the time. So for every generation, there is the hope and the aim that living with a condition is going to be better than for the previous generation. So sometimes, I mean, I live with a rare condition that my children have too, that they inherited from their father. So that's often something I hold up in my mind when I'm looking at them and thinking, I worry about the future for them. I sort of go, actually, you know, medical treatments, advances, improvements are happening all the time. And it's important to remember that the experience of a condition will be their own, you know, and they will have a strong role model in you or in others around them to live well with their condition. It's part of their life. If it's going to be, and it's not going to be all of their life. Does that make sense to you? Yeah, absolutely. And, I like that you know, every journey is unique because it's their life. And ultimately they will make the choice whether to get screened or not. I'd like them to. But it is their choice when they become adults that we've again heard from our community sometimes, you know, the frustrations from parents when children perhaps won't get screened, and that is sometimes really hard to live with and again and put down and let them make the choice. But again, any thoughts around that of how you can just almost let it go so it doesn't create that tension within families? Yeah, I mean, I think that's really challenging. And all I can say to parents, really, is that, you know, there's a sort of clash, isn't there, between sort of adolescence, when you're sort of immortal as a young adult, you can't even contemplate the idea that something would happen to you or you could even die at some point. You know, long, long, long way in the future, hopefully. It doesn't quite connect with that needing to go out and live your life and spread your wings. And how do you then incorporate this idea? Oh, I might have a condition that would stop me doing that or interfere with it in some way, or is certainly a complication. And I think for a lot of young people, there's a kind of kicking it into the long grass. You know, young people are great at denial and they're great at that sort of, oh, it'll be fine. Because that's part of the sort of adolescent mindset that helps them get out into the world. And I think all you can do as a parent is try not make it a source of conflict. You can hold your position, which is something that you think it would be very important and helpful for their own health and wellbeing going forward. And you'll support them in going for screening as and when they want to do that. And you think it would be a good idea. But ultimately the decision has to be theirs because otherwise, if you hold as the parent all the desire for them to have testing, it doesn't allow them to find their own desire for might that be a good idea for me in due course? So something about hold your line, but try not to not let it become a source of conflict. Easier said than done, I know, as a parent of adolescents. Yeah, no, absolutely, absolutely. And, I suppose as well as we are going through our journeys as well, and sometimes even when you've had an aneurysm fixed, as I have, there's still a worry that, okay, I might be at increased risk of getting another one. I'm a woman. That's a risk factor. I'll soon be postmenopausal. That's another risk factor that it's never done. You know, it's never, you're never treated. And you know, you, you think, okay, I'm good, I'm good now. And then there's that annual scan or every two year, every three years. So sometimes it's the worry kind of, I feel it like a roller coaster. But you know, I'm coming up to my scan time, which is, it's always in January, which is like a rotten time because it's always on your mind, you know, over Christmas and New Year as well. And then, you know, you get a good result. Yeah. And then you kind of go down and you manage it again. But then scan time comes again. So again, any kind of tips of managing that with annual scans and your checkups, discussions with, with neurosurgeons. Because then you have to take it off the shelf. That is a time when I'm taking and I have to deal with this. I have to face up to it. I have to discuss how my health is, how it's changed so we can make sure I'm on the right treatment and medicines and whatever. So when you have to take that box off the shelf, any kind of top tips of managing that roller coaster. Yeah, and it is a real roller coaster, isn’t it? You know, I often say to people, scanxiety is a real thing. You know, it's not a kind of, you know, made up thing. It's very real. And that kind of build up to scans and the worry because you're having to sort of face that condition, it's coming into view again, I suppose in a way that you might have been able to put it to one side a bit more. So often, we say to people, look, accept that you are carrying more worry during those periods of time. It's a bit like your muscle, you know, those psychological muscles are having to work harder in the run up to a scan, during a scan and while you're waiting for results too. So just as the way of if you were having to do a lot of sort of physical work on a particular muscle, you might try and not overstrain it by adding other things to that period of time of your life. So sometimes we say to people, look, try and not do too many other big things during that period. You're already doing a lot of emotional work by keeping yourself steady in the, run up to a scan, during the scan and while you're waiting for results. And that should not be underestimated. You know, you're doing a lot of psychological work, holding yourself together in a way when you know, you could receive news that would be very difficult to hear. So the worry and the anxiety and the run up during and after is very understandable. So I think my tip is really how can you best look after yourself during that period? You know, try and perhaps not take on big work projects or kind of manage your time so you've got a bit more rest time. Try and look at your timetabling and your weeks and your months to allow for the extra emotional work that you're going to be doing during that period. And sometimes I say to people too it can help to have really simple phrases in mind when you're going through that period, which is right now I don't have to do anything but go for the scan. I don't have to deal with the results and go with the scan all in one go. Just deal with the next thing. Yeah, just go for the scan. Make it as easy and straightforward as you can. Try and give yourself some time off afterwards just to sort of settle again and then deal with the next bit. Deal with either the waiting or deal with results appointment. But sometimes we compress and try and deal everything in our mind altogether and that's too much worry. Take each little bit a step at a time. You only have to go for the scan today. Then there's the next stage. So break it up into little compartments that can help with it too. Yeah, no, I like that. I, will definitely be doing that in January. Thank you. Oh, the other thing I always say too Rebecca, is I am so massive on treats after scans. It's become a bit of a joke when I talk to people is like, do something nice afterwards. And I, I was talking to someone recently, she went, I've got such a good treat habit going now. There's a really great shoe shop in a shopping centre near where her hospital is. She actually goes and buys a new pair of shoes every time she goes for a scan. I love that. I just, I go for a hot chocolate. I just need to, up my game. Exactly. I need to up my game. Yeah, yeah. And it, and it's funny but it is reminding us that, you know, you've done a really big piece of emotional work in going for a scan. Acknowledge that and reward yourself afterwards. You know, say well done me. I've been really grown up about, you know, and, and find that little reward afterwards, whatever it is, you know, a hot chocolate or you know, watching your favourite film in the evening or whatever. But something that just says well done me. Yeah, no, I love that. All of those top tips are coming out back in next January. Last question. Our time is coming to an end. Is that empowering as you say, that kind of empowerment of treating yourself, of acknowledging yourself and always validating yourself that yes you are going through a tough time, yes you can hang back and not give all your energy to everything and to focus on yourself and that is good. And that is, you know, you are worthy of that time and attention. Where can people go for more information? Where can people go to kind of get you know, again some more kind of top tips and perhaps a reminder of everything we've discussed today. Yeah, so one of the things that Rareminds we've produced recently is our Wellbeing Hub where we've put together a series of resources and sections around the common themes that people come and talk to us about at Rareminds and we know are particular challenges across all rare conditions really. And that includes things like managing uncertainty or dealing with change and loss, or coping with diagnosis. And we've also got a section on little sort of techniques for dealing with difficult feelings too. So when you are in the grip of a particular difficult feeling, whether it's worry or fear, anxiety, little techniques that can help it feel more manageable or to pass in time. Sometimes we have to, you know, hold on to the idea that all feelings pass in time. So the Rareminds Wellbeing Hub is up on our website and I think you can post a link to that after this recording too. So I'd really encourage people to go and have a look and see what speaks to you really. Thank you Kym for all that useful insight and that valuable advice here on Brain Aneurysms & Beyond. And thank you Rob Birnie, our producer, for all your help in producing today's podcast episode. If you enjoyed today's episode, please don't forget to subscribe and leave us a review. It really does help us to reach more people and continue these important conversations. You can find out more about what we do at Hereditary Brain Aneurysm Support on our website hbasupport.org Thank you for joining us.