Episode 17 - Spotlight on 'How I use BRIAN'

Chandos talks to Nicola about how she uses the BRIAN app to help her manage her condition, including using it to track side effects, to log when she has a seizure and to keep a record of her appointments so she can show her husband, family members and also her medical team.

Post Script: The BRIAN app has since been decommissioned, but you can find similar support, information and resources here: https://www.thebraintumourcharity.org/

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If you would like to speak to a member of our support team you can call 0808 800 0004 or email support@thebraintumourcharity.org

Transcript

Sarah: 0:38

Welcome to Let's talk about brain tumours, the podcast where we'll be talking to people who have been affected by brain tumour diagnosis, either their own diagnosis or the diagnosis of love one will also be sharing news and updates from the brain tumour charity about what we're doing to halve the harm and double survival.

Chandos: 0:55

Welcome back to the brain tumour charity podcast on this spotlight episode of the series, I'll be speaking with Nicola, one of the volunteers who's helped develop the BRIAN app, which she's talked about previously on the podcast, I'll be finding out about her journey and what she finds useful about the BRIAN. app So Nicola, can you tell us a bit about you and your journey?

Nicola: 1:14

Hi Chandy, yes, of course, it was 10 years ago that my brain tumours symptoms first started, and I was a busy single parent working out in the city at the time so it was quite, it was quite full on anyway. My first symptoms were little absent seizures, which I've never heard of, to be honest, until I'd have had a brain tumour, myself or even epilepsy and when I'd be talking to someone or listening to them, I just suddenly go blank. There were no obvious signs to me it was only a few minutes afterwards, when someone sort of said, are you, okay, Nic, that I came to, and I wouldn't have a clue what they were talking about. I got myself checked out by the GP, and then a neurologist and despite their best best endeavours, nothing could be found, really, they presumed it was epilepsy, as they were little seizures and gave me more medication for this, but the only thing that changed was that it was getting worse. So for the next seven years, they did lots of tests, scans, and tried lots of medications, etc. But it just wasn't touching it at all, at the beginning the episodes or once every three months but at the end, just before my tumour diagnosis, it was three times a week, and I was also passing out and sort of fainting collapsing, etc, which, when you're travelling to London back every day, and you're a parent as well, it was some, it was challenging shall we say You don't get a warning sign beforehand, like any pain or symptom before it happens, it's just like this, which would have been nice if you, if you get a heads up literally that it's about, it's about to happen so you know where to sit, and sit and be comfortable before something happens. So it depends on where you are really as to how bruised, injured or embarrassed you are. afterwards, the absent seizures, they, they became more regular. At the beginning, it was, like I said it was once every three months, and then it got a lot worse and mine were mostly towards the end of the day. So I'd always sort of blitz everything, be crazy busy in the daytime, get as much done as I could, because I knew that that evening, I'll probably have one of my little things or pass out. So I just wanted to do what I needed to do get home, pick my daughter up and get settled beforehand. So the daily thing became like a military military operation wasn't always successful but but I think I think I managed to do quite a few of them. anyway My diagnosis came seven years later, and I was actually over the moon in a way. Yeah, half of me was relieved that there was something definite with my diagnosis. So there was an element of control, if there is an element of control with something like a brain tumour, and I knew something about it. So I could learn as much information as I could, which will, which will help. I can also explain it to others, if if and when I needed to talk about it. But the other half of me was thinking, Oh, it's not the great diagnosis. but you know, so it was a, it was a half and half. To be honest, I look for a healthy form of escapism to take my mind off it literally and I decided to go down the route of studies and eventually, as it was somebody that would like I said, it really helped me, I ended up doing a degree and so from this, there's a, there's a nice thing that can, the nice thing that we say can sort of come out of it too um like a positive from a negative, that sort of thing. They thought it was benign and I've had it from when I was a child, they did confirm it was cancer later on. But the side effects that I had when I was diagnosed as benign. I was you know, like the collapsing on the train platforms and things like that, and the roads but they were when I was diagnosed with a benign brain tumour, and others that have benign brain tumours, they have the same surgery, they have the same side effects. and you know, there's the same same things, you can just have one of these things and literally, you know you can pass out and not knowing what's going to happen or where you know where you're going to wake up so. I got married in that time as well, which was a nice, a nice challenge. Although my husband might not agree with that, but my daughter, I mean, obviously it's it's directly for me, it's directly me that's affected but my daughter, she's grown up throughout her whole whole life with her mum having a brain tumour, so and the serious side effects that it comes comes with. So a lot of my drive is to support not just the individuals that got the brain tumour charity firsthand, it's the, it's the ones that are indirectly affected as well, because it has a ripple effect on on everyone. So yeah, and then after I had my surgery, I went and then I was in my immediate recovery and then I now in my, my long term recovery, this remains a journey, but

Chandos: 5:48

You said a lot that there and really passionate about, about the journey bigger and how it's affected you on and how you want to help other people and obviously this this episode is all about the BRIAN app and the way that it can help monitor and can help change the way that care is delivered to support people with affected by brain tumours. So what made you want to be involved with the brain tumour charity on the app development?

Nicola: 6:14

I think what was what's been so important to me is when I when I had my diagnosis, and even after my surgery I didn't know about I didn't know about brain tumours, when I discovered the brain tumour charity and the information that they have, I wanted to learn as much as I could for myself, my family and my friends, and make sure that it was accurate information. Because I think when you're diagnosed with something, even if it's small, the first thing you'll do is Google it, and then you just get so much information and if you're anxious about the diagnosis, any bad or incorrect information is going to make you even more worried. So as soon as I saw the brain tumour charity, I thought, this is fantastic, I can get as much you know, their the Oracle, I've called them the Oracle before, because it's just really, really helpful information and their so so supportive. BRIAN is, is an app, that's that would have been so useful for me prior to my, my own diagnosis. so it has been afterwards, but if I if I'd have known about it, whilst I was going through my journey, it's an app that you can download on your phone on the go. So if I was on the train, and suddenly I've thought of something, suddenly something happened, I could have put something in straightaway. I could have thought, right, okay, that's logged, that's going to that's going to be something that I can just refer to, and I can even send it on to my neurologists, my nurses, etc, or even show it to my you know, husband, etc. It's something that you can keep with you and just pop in some information and you know that it's stored that's one thing. Another thing that I like is the fact that it's private to you can give others access to see your details, but then you can also keep it to yourself. So you're a brain tumour isn't something you have any control over but with regard to BRIAN, you can have an element, there's an element of control shall we say. You can give others access and they can contribute to if you want them to. So it just means that when you go to see going monologist, you're not thinking, oh my god, what if I forget this? Or oh, my God, what was that thing again? You know, you've got it all there and they can actually see it before you even come up so you're a little bit more relaxed. When you get up there you can think right? Okay, by now as much as I do let's go from the

Chandos: 8:30

I can imagine for someone like yourself, who just like you shared that how long this journey has been for you to get that diagnosis and the confusion that was occurring behind the scenes and so I guess, having an app like, like BRIAN to have that information stored there for you, is extremely valuable, even now. What do you think the most important thing about the app that you found, as someone who's been part of that journey developing it?

Nicola: 8:56

I think there's so many different, there's so many different options on the app it allows lots of different people with lots of different requirements to use it, you've got the navigator element, shall we say and that allows you to pinpoint where you are in your journey. So for example, if you've just been diagnosed, you can you can go into the navigator, and you can look about how it'll work. which questions to ask for your appointments, which again, if you're suddenly hit with this, you've got a brain tumour diagnosis, you don't know what, to ask apart from, you know, how am I going to deal with this and you can also go into other elements of your journey, if you're further down the line, and you're going for your surgery, which again, is another another interesting part of the journey, but it just makes you feel one that you're not on your own and to that there is information there and it's accurate information, you know, so it's an extra hand holding thing and then it makes you feel better. There's, you've got the medication side of it that you can actually document and record you have the medication that you're on and there's challenges if you like challenges, different challenges, little quizzes to make sure that you're sort of on target with things and just so many different features. There's side effects. If you get different side effects, you can go into the BRIAN app, and you can see what those side effects are and you know, more information about those again, as opposed to Googling them and scaring the

Chandos: 10:22

I guess that that must be a really useful to tool life out of yourself. yourself like, you shared, like the impact that your brain tumours had on your family, I guess it must be really important for you to be able to share that information with them as well and make it accessible for them and now and in the future,

Nicola: 10:41

I think it's really helpful because, I'll um you know Id have a busy day, and I'd come home and I'd be talking to my husband, and I'd say, Oh, something happened or, you know, you could only give a certain amount of information from your, from your memory, could just be that it was a busy day, nothing to do with the tumour that you've forgotten lots of things that day, but anyway, but you can. and the fact is, if you've got this, if you have this to hand, with BRIAN you could sort of say, Oh, this happened, and it was this time, and it was because of this, and it just helps you build a pattern and then if you're talking to your family about it, they can actually share their perspective, because they with regard to seizures, and you collapsing, they're the ones that actually see it more so than you do. So it's this lack of partnership or teamwork you know, you know, not seeing work that you necessarily want to, you know, sign up to, to be part of that team but it's a, it's teamwork so it's a good thing to

Chandos: 11:36

The charity is obviously working to half the harm that brain tumours have and improved survival rates for patients and stuff that are affected by brain tumours, What difference do you think the app makes? And why would you recommend it to someone else,

Nicola: 11:51

I think it, it helped me, it's sorry, it would help me it's, it's helped me so far with regard to my recovery, because when I came out of hospital, I knew a bit about brain tumours but, you know, obviously, nowhere near what I do now and that's, that's through the research and in, you know, being part of the charity. But I think it helps me now because you can, again, despite you recovering from something, you can still learn a lot about it, and what, because recovery is an ongoing thing you don't have, unfortunately, you don't sort of have your surgery, go back to normal, like, you presume you will, sometimes you're very lucky. and you can do and everything's completely, you know, or 99.9% fine, but, but it is a, it's a work in progress, I think, just as tough. I think if you're indirectly affected, or if you're a carer or friend, you can download it as well. But it's just for myself, having having one with it would have been invaluable when I was going through the beginning of my journey, it still is now but but throughout all of my journey from the beginning, all the way through to my diagnosis through to my surgery through to my initial recovery, it's just, it just makes you feel that you're not on your own. And it's something that's actually, the fact is it's there and it's not you, you can sort of rather than print off a Google search and say, this is what I found, apparently, I've got you know, I've got a diagnosis, that means this, you can actually show that it's, it's definite inflammation, and it's by a, you know, an accurate source of information. It's a big community, is what I would say, and that's the charity and also BRIAN as well, you can converse with people that are going through the same things or have gone through the same things you can, you can actually help others and they can help you so it's a it's a nice, it's a nice element of teamwork. So I would have without a doubt, I would have downloaded it and I you know, it's useful for for us in recovery too. so. The brain tumour charity, their perspective, and their drive and their, their, their goals towards this is, is to half the harm and to you know, make life quality of life better and also reduce the, you know, the the time of diagnosis, etc. Just improve everything and I think that's that's what we all want that have that have, you know, have have the diagnosis or even know others that have the diagnosis to so it's something I'll definitely, definitely recommend is probably the word but yeah, I would talk about it quite a bit.

Chandos: 14:33

Thank you so much for Nicola, for joining us today.

Nicola: 14:37

Thank you, that was really, really lovely to talk about Chandy as well, I think I think talking about it does make it does make a big difference so thanks. thanks for having me.

Chandos: 14:48

Once again, thank you so much to Nicola for joining me today to talk about her experiences and why the BRIAN app is so important and remember whether you've been diagnosed with a brain tumour, or a family member or friend has the charity here to help to get support call. 0808 800 0004 That's 0808 800 0004 or visit thebraintumourcharity.org for more information.

Sarah: 15:16

We hope you enjoyed today's episode. Don't forget to subscribe to the podcast so you never miss an episode. If you'd like more information, you can visit our website at thebraintumourcharity.org or email our support team at support@thebraintumourcharity.org And finally, before you go if you enjoyed this podcast, please can leave us a review on iTunes wherever you get your podcasts so we can reach more people and raise more awareness