Episode 24 - Scanxiety

In this episode, we talk to  Betty and Sarah about their experience of having scans and the very real anxiety that often goes with this.  They share some of the things they have found helpful in reducing the level of anxiety they feel in the run-up to their scan and things they do during the scan to help them get through the experience.

If you'd like to talk to a member of the support team you can call them on  0808 008 004 or email support@thebraintumourcharity.org

You can find more information about Scanxiety in adults here and for children here. You can find out more about having a scan as an adult here and also for children here. You can also find an amazing animation for children here

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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 a loved one. We'll also be sharing news and updates and brain tumour charity about what we're doing to have the harm and double survival. Hi, and welcome to Let's talk about brain tumours. In this episode, myself and Andy are going to be talking to Betty and Sarah about scanxiety and their experiences around this. Andy you have your own experiences of this? So I'm going to hand it over to you to talk a little bit more about yourself and your experience.

Andy: 1:15

Thanks, Sarah. Yeah, my name is Andy. I'm a volunteer for the brain tumour charity. So I get involved in a lot of things across the charity involvement champion strategy, looking after the Facebook groups, my sort of experience five years ago I had a large meningioma diagnosed and removed, that was entertaining. Then I had all clear for about four or five years. So I have the annual joy of MRIs just to double check, everything was okay. And then this year in January, my, my annual MRI came back with some regrowth. So that's now being treated. So I've now ticked the stereotactic radiosurgery box, as well as the actual power tools to the head surgery box. Ironically, I'm now waiting for the results of my three month MRI check. So I literally am living scanxiety as we as we record this podcast, which is which is quite ironic. Anyway, over to you, Betty, do you want to talk to us through a bit about your sort of brain tumour experience and what you have to sort of what experience you've had of scanxiety?

Betty: 2:21

Well, I was diagnosed 18 months ago during lockdown, really so I think that was sort of, I was lucky. I had some symptoms, eye flashes and my left leg going numb. So thankfully the doctor sent for MRI and they found a 2.5 centimetre, posterior fossa. So I was on watching wait. And then I've just had my latest scan in March, and I had to have an appointment. And I was told it was no growth, I had to have an appointment. And then I was told that there was some growth, which was a little bit confusing, because I've now been told it's 2.5 centimetres, which is what I was told it was when I was diagnosed. So he said, Oh, no, it was actually 2.3 When you were diagnosed. So I thought, well, actually, I'm no worse off because I thought it's been 2.5 for the last 18 months. But he discussed how to discuss radiotherapy or operation. So I have that decision to make now. But I'm sort of pushing it and pretending it's not there and ignoring it. But I have massive scanxiety I absolutely am terrified of the scanners. And I also have a form rare form of dysphasia. So actually lying down, although it sounds stupid is one of my biggest fears is lying flat. So having to lie flat and have my head held and be put in a tube is just really, really hard for me. So yeah, that's where I am with it.

Andy: 3:47

Thanks, Betty. We'll talk a bit more about that in a bit in detail. Sarah did you want to give us some of your experiences and why you're here and you're sort of challenges of the brain tumour and scanxiety?

Sarah C: 3:59

Yeah, hi, Andy. Basically, I was diagnosed with a craniaphrangioma in December 2018 came as a shock because there were no major symptoms other than sort of headaches, which were passed off by my doctor has been hormonal. But they didn't send me for any tests. And then it was actually going to an optician for what I thought was a routine appointment because my eyes were a bit blurred and thought we needed glasses. I was sent to an eye Casualty Department who referred me for an MRI and diagnosed me with the tumour had that removed by surgery very quickly. Unfortunately, it came back six months later, had the surgery again, have now been three years I think without any regrowth touchw ood. But yeah, scanxiety is a very real thing that I discovered after my first scan. And it was quite a scary experience going in knowing that I could potentially find something. But also it was just the unknown. For me, basically, going to a hospital already worrying and then discovering how to have a cannula I hate needles, any sort. So that was really quite a difficult thing for me. And then basically going into this sort of tunnel having your head kind of held in place, all very difficult, very stressful. And the fact that I didn't have any music either because the music wasn't working was even worse. I just basically lay there with my own thoughts for about 40 minutes. And I remember being Yeah, I remember being in tears that first MRI because I was so scared because I just didn't know anything that was going on really. Since then I've had quite a few more and a bit more relaxed. But still, here, it's the waiting afterwards. That is the difficult thing.

Sarah: 5:47

Thank you for sharing. It's an interesting thing. Because when people get initially diagnosed, they've never ever heard of scanxiety, and they've no idea that it's actually a literal thing. They think getting diagnosed is bad enough, but then suddenly, they have this experience of right now you've got to go into this, this giant machine, all these things are happening. And then you've got to wait for results. And they're like, I didn't even know that was a thing. I just thought that that was I just thought I was the only person that felt this. You know, it's when you put a name to something actually, it can be helpful for people, there's a way of describing what that experience is, and that it's a legitimate thing that huge amounts of people. In fact, I don't think I speak to that many people, they're in the minority who say, Oh, I never have any problems, you get the odd person that says, Oh, I sleep through mine, it's very rare. Most people experience different levels of anxiety. And it starts at different points.

Sarah C: 6:47

For me, it is, as you say, once you sort of get that phone call, or that letter saying, right, we need to book you in, you sort of get that date. And then it's kind of there in your mind, you know that you've got to go through this. And yeah, it's for me, it's not something that I in any way kind of look forward to, I don't find it a pleasant experience, particularly the kind of week before I can feel sort of my stress levels build the day, I'm just kind of Yeah, reserved, kind of resigned to the fact that I've got to do this. I think a big difference can be the staff that you you deal with at the actual scanner, if you get ones that are very friendly, very sort of warm and encouraging. It does make things a lot better. But you can get people that are a bit sort of just that they're in there doing their job, and they don't really sort of think about what you're going through unnecessarily I don't think I think for me, definitely having some music on while actually have the scan makes it a bearable experience for me. But it's it's kind of knowing when you come out of the scam, that you're looking at that person and they know what they've seen, and knowing that they know, but you don't know. And where I live, it's up to six weeks before I know what's going on. So it's that factor that knowing that you're seeing somebody and they know full well what's going on. And you don't and it's it's sort of it's difficult to handle that. I remember after my first scan, actually my husband went with me and he was waiting for me outside. And I walked out of the room. And I just said, the guy who did the scan, he saw something it's like what do you mean, he saw something? Did he tell you? I went No. And he said, Well, how do you notice? And I could just tell it could just look, I don't know, I just saw something in his eyes. And I just knew that he saw something. And this was before I was diagnosed. But I just knew, I don't know why I just knew there was something there. So it's just that knowing that other people know before you what's going on with your own body. It's quite difficult.

Sarah: 8:44

And that's quite a long period of time, isn't it? When you think six weeks of waiting, then if you know, how many weeks would you say you know, before you you get the you're talking at least two months? Aren't you of your life each time? How often do you have your scan? Sarah,

Sarah C: 8:59

I have mine annually now. So because it's in a set time, I know throughout the when it's approaching so mine are in August. So I kind of know that it's coming up to that time again. So yeah, and I think one of the worst things, the last one I had coincided with the sort of anniversary of the date one of my operations. So I actually had to go into the hospital where I'd been for my operation and found that extremely difficult, because I find it difficult going into the hospital anyway, sometimes just remembering what went on. But that particular date, it was just it was really difficult experience for me and had a thought about it at the time. I would probably have said no, I'll do another date. Which i now know,

Sarah: 9:42

it's things like that, that you don't know till it happens. So because you don't know how you're gonna feel it and how that anniversary is going to make you feel

Sarah C: 9:49

Yeah, definitely. I don't even have to kind of recognise the dates of these things. But for some reason, my mind and my body seemed to know. So it's just kind of ingrained somewhere there

Andy: 10:03

So you know you have the cannula up until recently, they used to try and put it in the back of their hand. And I had a really bad one where it was it might have been coincidence it was on a Sunday. So I don't know if it was Sunday staff but the lady doing it, kind of put it in and I looked down and there was a big bulge on my hand and she'd kind of missed the vein or something. I'm like don't worry she said we'll try the other hand and I'm like I don't need this just before going in for an annual MRI but the last 2 or 3 they've gone in just above the elbow. And that is so much easier because it just seems to be just me the veins seem a lot easier to get out if that makes sense. I don't know whether you found that as well.

Sarah C: 10:40

Mine go in the definitely go in the back of my arm. I've never tried to put it in my hand, thank goodness. But I always say sort of, can you make sure you cover it up so I can't see it? Because I just don't want to see anything. That's, uh, can't cope with it. I think the weirdest place had a cannula was actually in my ankle during an operation. So that was a really weird one. But yeah, it's normally the back of my arm.

Betty: 11:04

Yeah, mine's usually in my arm. But when they're putting that in, I'm always at this sort of, I don't know if I'll get through this sort of stage. And she said, it's usually people are terrified of having the cannula and I said you can stick needles all over my body. Just don't put me in that tube she said, that's very unusual. But that really doesn't bother me that it's you know, everybody's different. So, but yeah, she always finds it quite funny when I say that. I just don't imind needles sort of, I don't like them. But this isn't my biggest fear. So.

Andy: 11:33

So I just look away. i If I look down at it, I reckon I pass out. I'm not. It's just me. I just didn't sort of needles and stuff. Oh, no, no, thanks. So it's like, horrible

Betty: 11:44

No Well, I was I was a nurse. So I'm sort of used to needles. It's not the same when you're having them yourself. It's totally different. But, you know, sort of it doesn't sort of bother me too much. To be honest. I'm lucky in that respect.

Sarah C: 11:56

I'm the same as you, Andy. I just say, right, tell me when you do. And it's I can look away because I do not see it at all. And if I did see it, I think I would be the same I'd pass out.

Betty: 12:04

Yeah, I don't I don't sit and watch I still look the other way but I can still cope with it. It's not my biggest thing. But I understand if you hate needles, it's a really big part of this, isn't it? Yeah.

Andy: 12:16

But even that I find it's the last couple. I'll have them put in before so we're talking about cannulas here. But when I'm sat, they'll go in before and I'm sat in a chair and then you walk into the room. Sometimes I'm wearing a gown sometimes I'm not. The last one I had was literally it seemed like it was in the carpark because it was a really old machine. And they They laid me down on the actual, you know, the MRI machine and then put the cannula in then so it's like, it seems like almost every time I've had an MRI, that must be five or six, at least in the last five years. Because every time it's been different, and I don't know whether that's part of the challenges you don't everyone doesn't have the same routine. Yeah, I do. Because I'm like part of me is thinking but what am I going to have this time and am I sat up am I lying down is it in my arm is iit there. And I just find things like that just add to the general feeling of oh I don't like doing this?

Betty: 13:11

No. My last one was actually done at a private hospital, which was a bit of a treat, they were doing catch up. But as I walked in, The radiographer walked out and said I've got to go my husband's got COVID which immediately made me think okay, I'm going in a room where you've just been in this, you know, so that got me a little bit anyway, when I went in there were two other radiographers. But they were obviously very new. So they sort of had a little bit of practice. And she was very wary to put the cannula in and she sort of looked at me still, I'm not going to put the cannula in yet. She said you might not go through with this. And I still Yes, I'm going through, as I said, whack it in now, I'm not going to sit up and start it all again. So she did actually put it in and they were both very, very good. But you could tell they were very new at it. But yes, that was a sort of that was the sort of stress, you know, well, I'm walking out. Okay, so that's a radiographer gone you know, but it is I agree with you anything else that takes you know, you need it to be exactly the same as before, because you've prepared your head for that. Haven't you your sort of I know what happens? You do it this way. Don't alternate it. Yeah, I agree. It's part of the routine, the pattern to get you through.

Sarah: 14:13

Somebody hasn't had a scan yet. And they're thinking, what are they talking about cannulas, what why would I have? What would What's this? Would one of you like to explain about what a cannula is and why they put it in.

Betty: 14:25

It's the little needle that they if you ever go into a hospital and they want to get drugs into very quickly or intravenous, they put a tiny little needle into one of your veins. And then they can inject stuff into you very, very quickly. And we have it when we have the MRIs because they put in what they call a contrast dye, which they usually take a picture before they put this in, and then they put the contrast dye in, which it just it feels warm. And sometimes it can make you feel like you need to go for a wee, but you don't it's okay. But they always warn you of that. And basically the contrast I then goes round all your vessels in your head and it shows up very clearly what's going on in there. I think that's how I understand it.

Andy: 15:06

That's my understanding. The contrast I shows up very clearly what's brain tumour and what's natural brain if that makes sense. So I don't know if everyone does but I think a lot of people so when I have my annual MRIs I actually have four MRIs each lasting about three and a half to four minutes. And it's the last one for me they put the contrast dye and so you've, you go in, you go in the can for three MRIs. And they sort of they pull you out, shove it in your arm. So it's one of the more technical phrase, I shouldn't say that, and then pop your pop you back in. And you sort of you have another last one with it with it. So that's my how mine, I don't know whether your guys are saying yes.

Betty: 15:53

To me when they put the contrast dye in, I think yes, I'm nearly done.

Sarah C: 15:56

Yeah.

Betty: 15:57

That's the thrilling. Yes, I've only got to stick this a few more minutes. And you have what they call basically a panic button in your hand, the thing that you're allowed to push, and you hold on to that, and so many times you think I'm going to push it, I'm going to push it in it. No, no, no, no, no, I'll stick it, I'll stick it. But once they put that contrast die in, and it's like, Yes, I can do this, I can do this. It will be one more song, maybe two. And I'll be out. Because that's how I do it with the songs. I always have to count each song as roughly five minutes. And I'm counting on my fingers. My last one started with Bohemian Rhapsody. Because I always asked for the 70's to take me back to happier times. And I thought, Yes, this is a really good one this will last for at least 10 minutes.

Sarah C: 16:38

I'm exactly the same. I count the song.

Betty: 16:40

Yeah,

Sarah C: 16:41

it's funny, isn't it the way you sort of work your way through it. And yeah, the one that I didn't have with music, I was actually singing songs in my head

Betty: 16:47

in your head,

Sarah C: 16:48

to try and work out the timing.

Betty: 16:50

One time, they put on some really, really modern stuff. And it was useless. And also I couldn't tell where one song ended. And the next one was just like this awful noise now, I really was. I can't do it with this music. But anyway, the last time I did get the 70. So that Yeah, but it really helps the counting, doesn't it. And

Andy: 17:06

when I had the stereotactic radiosurgery part of that, as you have about 35 minutes, MRI, but they put me in a newer machine so I could have some music. Yeah, because I'm often in the old machines. I don't know if that's just because I'm less risky. But I'm on the old machines that don't have music. But the new one did. So I picked an album that I liked, which was 42 minutes long. So I knew I just had to listen to the album with the faffing around with everything else. Yeah, that would do me that, to me, it was a massive help, because I liked the album and it never feels like it's sort of 40 minutes if you know what I mean, so I'm thinking, yeah, just sing along to the music now. And that that does really help when you get music in there with it.

Betty: 17:48

I always say how long is this going to be roughly. And they usually say 30 minutes. And it hasn't ever been any longer than they've said. So I have been lucky in that respect.

Andy: 17:59

So have you had to wait a long time for your scan results, Betty?

Betty: 18:02

No, I'm very lucky. I'm in York. And they let me go to the local hospital, though. I'm under Hull for treatment. And I usually have to wait about 10 to 12 days. So I'm very lucky, it comes back so quickly. It has each time so far. And that's a massive relief. When I get that letter through. And I don't open it, my husband opens it, we have this thing because we both have quite a few illnesses. So we have this sort of thing that when the letter lands, somebody else grabs the other grabs, it opens it gets the news, and then you you tell the other person. So it's just a thing we do in this house. But yeah, when you get that letter, and then you sort of read it and read it again. But yes, I'm very lucky in that I would hate to wait the six weeks that you're waiting, Sarah for yours. That's a very long time.

Sarah C: 18:45

It is I just don't think they understand really the impact it has on you that making you wait for six weeks that's the thing it can obviously be done quicker.

Betty: 18:53

Of course, it shouldn't be bought in that maybe one of these maximum maximum wait two weeks, because the stress is unbearable. I mean, there's stress. You know, we were talking about when it starts with you. I mean right now. Okay, my next one is March because I've just literally postponed everything because I just cannot cope with anything else at the moment. And my consultants said yet, we can still do that. That's okay, we'll just keep an eye. So at the moment, I know my next one is March. So I'm sort of hey, cool. My next one's March, once it gets to Christmas, and then it's right, that's after Christmas. I'm now going to work my way up to March. And that for me is when it'll really start. You know, the whole process will start. Yeah, and then

Andy: 19:31

Yeah I'm the same my op was in February 16. So my annual one is usually around about sort of mid Feb. So I can I can get to Christmas fine once once you get past Christmas, possibly New Year's Eve, then you can almost feel the anxiety levels going up because you're thinking right, there's nothing now between me and the MRI. Yeah. And that so it for me it starts Yeah, sort of just after new year I guess for for an MRI that's often in the sort of middle to the back half of February. You try and put into the back of your mind but each time I do find is the more I have slightly easier to gets.

Sarah C: 20:08

Yeah, yeah. I would agree with that

Betty: 20:11

Yeah, I agree with that, too.

Andy: 20:12

I had the one this year. I mean, the other bit about scanxiety was always I don't know if you guys feel this, but when you think right, I've had the the the scans. If I don't have anything in the first week, 10 days, that's a couple of weeks period. He thinks that's what I want to hear. And if it's longer than a month, you're thinking that must have needed a second opinion. And um, that's always been how I've kind of got and then this year, I hate to say it when when I got the regrowth I didn't actually get anything for a month that was so we're already thinking uoh. And then we actually unfortunately got the letter. It was invited me in for an appointment within different radiography team. Before I actually got the results of the scan, because at first I knew there was something wrong was when a letter dropped on a Saturday morning saying, We want you in for an appointment with a team you've not met before. And I'm like, what does that mean so I spent all weekend thinking Is it a really nasty one? is it this? Is it that and we phoned them on the Monday they said oh yeah sorry about that we we sent the letter everyone before we'd actually told you. We do apologise. Yeah.

Sarah C: 21:21

yeah, admin,

Betty: 21:21

Yeah,

Sarah: 21:23

that seems to happen more often than it actually should. That's something that definitely they need to work on. Because that's not an isolated case. And that's definitely something that mistakes happen. But that seems to be something that they could do something about. And it is about different departments communicating better with each other.

Andy: 21:45

I think also the difference like we've got three people on the line or on the podcast here, we've all got different experiences. Because Betty gets hers normally sort of sort of 10 days to two weeks. I'm usually about a month and Sarah's is about six weeks. and yet it's the same kind of NHS, I'm guessing. Yeah. How come that is? I want to move to York. Thanks. then I'll get them earlier

Sarah C: 22:10

Yeah, I'm only in Leeds so yeah, it's not far from me. Why is the big difference between Leeds and York?

Sarah: 22:16

Absolutely. And that's a really valid point, isn't it? Is that why is that such a difference? You know, just a few miles up the road? Because like you said, the stress of waiting is every bit as bad as the stress of actually going in the scanner itself you know

Betty: 22:32

yes, it definitely. When I first got diagnosed, they rang me the next day, which obviously caught me out. I was literally in the middle of a family crisis, my mother's carers quit. And she was needing care. And I literally had to take her in that day. And it was another lockdown. And then I got this phone call saying, oh, you know, when they said we couldn't find any reason for your dizziness, and numb leg, but we found this, you know, so it was they did during the next day with that. But yes, I am lucky. I mean, it is quite a small hospital. I think that's probably why which isn't a benefit for other things. I can assure you but for gettting the results, it's it's good. But

Sarah C: 23:07

yeah, yeah, my first one I did. I did hear within I think, five or six days.

Betty: 23:14

Really? Yeah.

Sarah C: 23:15

Which Yeah, I heard the day before I was supposed to hear with a phone call. Although that was yeah, that was something in itself in that a doctor or a trainee doctor thought I already knew and just blurted it out over the phone, basically, Oh, yeah. that cyst in your brain and I was like what cyst in my brain and referred it to it as a cyst in my brain as well. So when actually saw the consultant following week, and he said tumour, I was like, I didn't realise that a brain tumour it's like, yeah, that's what it is. There was a catalogue of yeah errors on that, in that the way I was told was when I was at work by myself, over the phone, in such a blase way. And then when I said, when it was clear, and he was kind of like, oh, did you not know, I was like, Do I sound like I knew. And then he was like, Oh, well, don't worry about it.

Betty: 24:00

Yes, yeah. That's what I got.

Sarah C: 24:02

Okay. Yeah. Great.

Betty: 24:03

Yeah. He said, It's, he told me the name. So it's a brain tumour. He said, It won't kill you. And he said, this is a this is the referral to Macmillan Cancer Care. And that was literally it. And you come off the phone, and you go until you go straight onto Google. And I actually sat, it was the end of the day, and I literally sat on the sofa all night, I think I was just waiting to die. To be honest. I just literally sat on the sofa all night. And I didn't know what to do in the end of the jigsaw. And I thought if I do this jigsaw, it was for age seven. And I thought if I do this jigsaw, and I do this, keep doing this, I can keep proving that I can still think and I don't know. And then I googled the Facebook group, and I got them. And the next day, I managed to restore some sanity, thanks to this wonderful, wonderful group, you know, and then I managed after a couple of weeks to sort of get a new normal, but yeah, it was it was crazy the way they tell you and it's just so casual. I know. There again, it's their job, but Oh, my goodness, you know, you're telling somebody something life changing, you know,

Sarah C: 25:02

Abolutely and making sure that there's anyone with them at the time

Betty: 25:06

He thought I was driving and he said, Would you like to put over your sound, you know, you sound rather upset,

Andy: 25:12

Not what we want to hear is it

Betty: 25:14

and I said well, actually my husband was driving and he has pulled over because obviously he is very upset. So you know, there's so it's Yeah, it really is it's it's they've got to look at the way they actually do these things.

Sarah C: 25:27

I think one of the worst things as well, as well as finding that out was then he said, Oh, I need you to come back in for another MRI tomorrow. I only had one on Saturday. I'll do it again. Yeah, then another one. And then even better. They put a cannula in for that one that they didn't need. Because the dye because it had been Saturday on a time of day and it was then Thursday, so it was too soon. So they actually put a cannula in. And then after it I said, Why have I got a cannula in the way? Oh, he shouldn't have so i was kind of like, okay, so can you take it out? oh no you have to go back to the wards to get it taken out because I was treated as an outpatient on the ward for that MRI. It's just kind of like this is encouraging.

Sarah: 26:04

Oh, no, when there's all this like anxiety around having scans, because it's the whole thing, isn't it about going in for the scan the actual sitting there in the machine, then you've had quite a negative experience of how you got told in the first place about your diagnosis. So every scan you have there is potential, because that's the whole thing about having a scan isn't there is there is always a potential, that there could be some change, and how that news is delivered to you, stays with you. You're all talking about something that happened a while ago, but that feeling of how you got told stays remains with you. And

Sarah C: 26:43

definitely

Sarah: 26:43

that fear of if there is bad news from this scan? How are they going to tell me? Am I just gonna get a phone call when I'm at work? Am I Are they going? Are they going to deliver that news to me in a way that is going to you know, I'm going to be okay, because I'm with people I'm in a safe space or wherever if they're not even making sure of those basic things, then that increases the level of anxiety you feel every time you have a scan, because you can't guarantee that they're going to tell you in the right way. If there is a change.

Sarah C: 27:16

Yeah, definitely. I thought I thought I was bad sort of had bad luck when I found out that way. But then when it came back, the way I found out that time was by somebody from the operation side of things ringing me to confirm my operation date.

Betty: 27:30

Really?

Sarah C: 27:31

Yeah, oh no. Yeah. I'm just confirming your date of the operation. What operation? He said the name of the operation, which was the one I'd had previously. And it's kind of like, yeah, I wasn't aware I was having an operation. You just went Oh, God, sorry. I thought you'd been told I was like no, what it turned out is that they'd had the multidisciplinary meeting that morning. And the nurse that I link into, was on her way back to her office, because she has to be in a certain place to sort of talk to people about such information hadn't got back. But in the meantime, my consultant thought, right, I'm going to book this date, because I don't want to lose the date. And hadn't advised the people he booked it with don't contact her because she didn't actually know, again, all admin so fun

Betty: 28:15

That's so awful. That's really awful

Andy: 28:17

And that's what happened to me this time, it was the consultants who requested that I go to the radiology team for my, the recent treatment for the regrowth. But he hadn't actually made sure the letter had gone out first telling me the results. So it feels like you're gonna want to point fingers, it seems like it's the consultants who are in their own bubble of

Betty: 28:39

Yes,

Andy: 28:40

vast intelligence, but not necessarily vast ability to communicate dare I say it which is how you'd want it, I guess. But in terms of getting the information, it just don't close the loop to make sure that you're ready for the information and you're getting it in a way that actually reduces the impact of the information.

Betty: 28:58

No, it doesn't matter if everybody does their job and sends it I've done my job. That's me next job. And there isn't any thought really is how is this going to impact on the person who opens this letter or gets this phone call? Really isn't you just become and that is something that I think has changed dramatically. Because I mean, I was nursing in the 80s. And everything has changed. So so much, you know, including the amount of time that people are kept in for all these things, which just absolutely horrifies me, you know, when the simplest operations people would come in overnight, they'd be prepared, they'd be calm and now it's sort of in bang out. And, you know, I mean, my husband has this joke that soon they'll have just the operating theatre open onto the car park and you will go literally out and in to your car you know, which

Sarah C: 29:44

it feels like, it really does

Andy: 29:45

I'll tell you what I'd almost prefer if the MRIs didn't happen in the hospital, as well, because yeah, going to the hospital my the only time I've ever been in hospital in literally my life, except for when I was born, I guess was when I was rushed in with the symptoms in my brain tumour five years ago. So every time I go into hospital and you smell the hospital and you hear the beats, it just all comes flooding back. So even before I've actually got to where I need to get to for the MRI, I'm on edge because I'm in the hospital again. Those memories come back so I don't know whether it's how it is but that doesn't help with the anxiety. Not at all. I've tried to sort of say Okay, can I have meeting with the team. If the recent shipment has looks like it's worked or not, right? At least I'm not having to check, worry about every time the postman comes, deliver a letter? What does that letter look like? How big is the letter? Is there a little one, sort of reduce the scananxiety for me, knowing that it'll just be on that, that day, I have to really get worried in a nice way. To that I'm kind of not worried about it too much.

Sarah C: 30:56

It's funny when you mentioned about sort of going into the hospital for MRI, because the last few I've had, I've actually been in the car park and the mobile scanner. It's the hospital car park. But it's that thing that I don't have to go into the building, I just go into this little like, portacabin thing. And I actually prefer that, funnily enough, because when I first went, I was just like, Oh, my God, wherever they sent me, what is this? Is it actually a real MRI scanner? Yeah. But I actually prefer it because I don't have to go into the hospital. And I think another thing that has helped, but that they don't have that in this one, but one of the MRIs that had actually had a mirror in it. So you could actually see, you could look at the mirror and see out of the scanner. And I think that's the thing that should be in all of them. Because it really does not feel closed in

Andy: 31:40

like a car mirror almost, isn't it?

Sarah C: 31:42

Yeah and it just allows you to see space out there for you feel is closed in. And I don't know why they don't all have that, because that would be a much better way to do things.

Betty: 31:52

I didn't know about that until I was on the site. And somebody said about it. And I thought what a brilliant idea. So I did ask for it. And they put it on the first two I had because I had one back in 2016. And they didn't see anything, then I was having these balance symptoms, but there wasn't anything then. And then just said, Just close your eyes. And I did. And I found that really hard keeping my eyes firmly closed, because I didn't see the cage, they put a little cage over the top. And I didn't see that. And then the sort of second one I had I did this I tried opening my eyes just for a second and then quickly closed them. But once I got that mirror, that was great, because I could see them in the control room. And where I go the MRI places actually on the outside of the hospital. So they're again talking about it, I don't have to go in. But that little units itself has become a bit of a place for me now. But once they put the mirror on, I could see the sort of control people in the control thing, which was great when they weren't the machines. But when they moved from the machines, I then started going, where are you going? Where are you going? for coffee? Have you forgotten me? And then that started freaking me out. But then they sort of came back. But then I also started looking at their faces. And I kept looking at the screen and I'm thinking oh my god, what have they seen, you know, and you interpret it all in a different way. But the second time at the private hospital when I've just had, which was lovely, because like you say it wasn't the same place. So although there wasn't the routine, it was a different place. And it felt a little bit easier. I asked for the mirror and I put it on and there again, it was it did help because I literally look at that and concentrate on that. It's just something else to take your brain. So with the music and the counting and looking at that, and singing along to the words in my head that you know, that sort of got me through and then you get the contrast and you think yes, and then it was strong. It was the Boom Town Rats and I don't like Mondays but then the song sort of stay with you. The very first song I had was eye of the tiger. And they said we put that on to sort of boost your running up that hill. And it was really funny because I picked up a little charm and I don't normally have to but I picked up with the bag Jam, which was a little tiger. And I didn't know why I picked it up because I don't particularly like tigers. And when they actually told me about it, and suddenly it was 2.5 centimetres, I actually measured this little tiger to get an idea of how big it was. And it was exactly 2.5 centimetres. So it's one of those funny connections. But if I hear eve of the tiger now, you know, it takes me back to that scanner. But I also think I'm not in that scanner right now. I'm not in that scanner. I can listen to that song. I'm not in it. Be grateful, you know. Yeah,

Andy: 34:27

the challenge I've got unfortunately the mirrors I'm very short sighted. And you can't wear your glasses in the MRI so unfortunately, it's not much use to me but there we are so

Betty: 34:38

And they pad your head. That's one thing you have the headphones on and, then pat your head and that freaks me because that's, that's like holding you down almost, you know, and I don't like that. And I did actually say I can pull this cage off if I have to can't I oh no she said it's fixed and that absolutely does that but I could rip that off. If I had to believe me that would be ripped.

Sarah: 35:03

Yeah, it's just for people who don't know about MRIs just a little bit you it's a quite a narrow tube. So you go into it on a bed and you can kind of feel it on your shoulders and your arms. So that's why I'm not claustrophobic but in there. You're like, whoa, this isn't very nice. And you've got the little squeezing you one hand if you have a panic attack, so that's good. But then they'll they'll put you in it's like a no, it's a pillar that shaped a bit like your head. They'll put earphones in because it's really loud, really loud. And then they'll put usually sort of foam either side of your head, and then a little sort of frame over the top of your face. The first time that all that happened, I'm like flipping out, what else are they gonna do? However, once you get used to it, and some put headphones on, as long as you can listen to the music, some unfortunately, the old ones don't. And then they're bsically pop you in so that you can hear the control and you can hear the people. So they'll talk to you. And they'll just say, is everything okay? Okay, so that's comforting. And just for me, just a few tips that should we say that helped me get through it is, if there's music on, bang, the music on, I always keep my eyes shut. As soon as I'm laying on the table, I never open my eyes. And I'm kind of thinking you're on a beach, you're on a beach. You're not where you are. Don't think where you are. If there's music, that's great. Just take your mind the whole idea. And the whole trick I think everyone finds is to try and occupy your brain. So you don't think I'm in a narrow tube? And I can't move and I can't get out. Oh, my before, you know, yeah, you had to go my pulse I reckon must be up roundabout, 180 beats per minute. At the start. It's just, I'm thinking, is this normal? Is this safe? Deep breathing, all that kind of stuff? No one else ever seems worried about it. So why should I be? And then for me, when I do that, what's worked for me is I'll ask them how each, how long each scan is. And if I say it's four minutes, I'll say Right, that's six fours that 240 seconds. And I'll count down from 240. to zero. Yeah, and see how close I can get to zero to see if I can count seconds in real time. So there's a little bit of competition, which I like. And also because you're counting down, or I'm under 200 oh I'm under 100. Now, or and then when you get to zero, I think you know, I've miscounted this one, but it's just taking off. And by doing that and keep my eyes shut, that takes my mind off it and then it breaks it up into manageable chunks. And then they'll go out 15 seconds too quick, which I normally am because I'm just counting too quick. So by the time you've done that for the two of them, and then they really you out, put the contrast dye in and then wheel you back in, as Betty says, then you're you know, you're sort of I'm three quarters of the way through and I've gotten the heartbeats come down to something a little bit more respectable. And that for me is how I how I get through. I don't know if you guys have any, any tips or any any, anything that works for you.

Sarah C: 37:48

And the same definitely music, if you can have the music have music without a doubt, because, yeah, I always remember back to that first one I had where I had nothing to distract me. And it was just all the negative thoughts going on in my brain about what was happening, what they were seeing. It was just Yeah, it was unbearable that and I think, be aware, think things that you don't get told me that it is extremely noisy. When I first went in, it just felt like you're in kind of some sort of washing machine with the noises going on. And I remember laying there thinking, is this actually supposed to be doing this? Am I in a faulty machine here and there's there's something drastic going to go wrong, like it's going to explode. But no, those noises are normal. But it's almost like if you're having your first MRI ever, they should actually sort of sit you down and go, Okay, this is what you can expect. This is what will happen. But they don't they just assume that, you know, shove you in. And then you're the line they're thinking Wow. So yeah, music definitely don't be scared of the noises. They are normal. And yeah, my my sort of thing is counting the number of songs and working out the timings

Andy: 38:50

Do you take your own music or do you listen to what they give you?

Sarah C: 38:53

No, I took my own music the first time and then they told me it wasn't working. So I've never taken it since. So they usually sort of say, are you happy with this station? I'm like, Yeah, it's fine. As long as it's music. I don't mind. So yeah. And then I don't know about anyone else. But I always have the real sort of urge to itch my nose when I can't move because if I move they're gonna have to restart it for I don't want to do Yeah, I

Betty: 39:16

think I think I say I stay so. So still. I can't do this again. This is your one shot. Yeah. Let me back in here again. This side of Christmas. So yeah, I think I just literally don't move at all. I'm so you know, I've got to get through this. And I don't think I move at all. But I agree everything you said I absolutely agree with. Yeah, I just wish that somebody was allowed. And I mean, obviously, it's I wish somebody was allowed in with you. I remember reading about somebody she was in such a state that they let her husband hold on to her ankle. You know, it was the only way to get through it. And I thought I wish we were allowed that just somebody standing there, you know, that would make me feel so much safer. But

Andy: 39:59

and I think they'd also appreciate what we go through as well perhaps because my wife sort of says goodbye and I'll go off sometimes in a gown sometimes not sometimes across the carpark and I'll pitch up again about 40 minutes later and go Oh, thank God for that. She hasn't got an idea when we go through,

Sarah: 40:14

Even if they could have a separate room where they could be like you said that consultants are talking to you and they can talk to you. Even if your loved one could be like in a separate glass room where they could watch you and just talk to you where it could

Andy: 40:27

that would really help

Sarah C: 40:28

Oh, yeah,

Betty: 40:29

I'm lucky because my husband's had MRIs. And he's had to go in the tubes. And he's a very big man. So for him going in them is extra hard. But the only thing I was going to say was somebody on the site lately who was diagnosed the same time as me, has just been for her MRI at Castle, Castle, middle of Castle Hill Hospital in Hull. And she said they have some machines called T three machines, which are bigger. And she said that was better. And I believe that in some hospitals, if you let them know how claustrophobic you are, they do have bigger scanners they can put you in. We haven't got them in Yourk because I asked, but I believe they are available in some of the bigger units.

Andy: 41:07

So it;s worth asking, isn't it? You never know.

Sarah C: 41:09

Yeah.

Betty: 41:09

You never know.

Sarah C: 41:10

That's another thing. You know, I've never sort of felt like I could ask anything like that. I've always felt that you can do give him an appointment. You go where you're told, but I think because you have more you start to realise actually, I'm entitled to sort of asked if these things were available, because I know there are some newer machines, I've yet to see them. But apparently there are some newer machines at the hospital I go to so that's somewhere. So who knows what they're like, they may be really luxury ones that I'm missing out on? Who knows?

Betty: 41:35

Yeah, ask.

Sarah: 41:36

Like you said, you. It's that feeling? Isn't it that I shouldn't ask because I should just get on with it. But actually, if you are really struggling, ask. I know there are some people that really struggle and they have sedation and stuff to help them because they panic so much to going in there. And that fight or flight feeling of I just need to get out and being able to lie still. So having some sort of sedation, even if it's a mild sedation, just to ease that level of anxiety is something that you can ask for.

Andy: 42:08

Yeah, just that's worth noting for you. Because I've seen people that I didn't know you could do that you can have what's the technical term

Betty: 42:14

I was gong to say that Valium

Andy: 42:17

Valium yeah that they can give you beforehand. Yeah.

Sarah C: 42:20

Yes, I could have easily done on my first one.

Andy: 42:23

It's also understanding that virtually everyone who goes through an MRI is going to the same anxiety levels and the same issues. So if you want to ask for a bigger scanner one with music, if you want to ask you to kind of have something to calm my anxieties that's all on the table shall we say it's worth it's worth definitely knowing that.

Betty: 42:41

Yes, it is. It is that's the where the site has told me so much about everything, including, you know, when I just did my last consultation, I was able to sort of talk to him, knowing the facts are saying, Yeah, I'm watching people having their operations. I'm watching their recovery. I'm watching them having the radiotherapy, I'm watching their recovery. So I was able to sort of really make informed decisions and talk to him because he actually said to me, which side is this that you're on? You know, that's I told him, you know, and as I said, it's just fantastic. It's such support, but it is if you know the information about the MRI, then it's so much better than going in, like we all did sort of, you know, I mean, I had obviously, I'd had hospital experience. But for me, it was nothing that you know, being on the inside, having it done to you is nothing like watching somebody else. And my very first patient I nursed This was back in the old days when things were not like they are now but my very first patient was a lady with a brain tumour. And I said, Dear God, whatever you give me, never give me that. And I've never forgotten that. I've no. Treatments are way, way, way, way different now. Yeah, you know, it was a long time ago. But yeah, it was a bit of a sort of, well, thanks. I said, you've given me an awful lot in my life. But the one thing I said, Please don't give me that. You've dumped on me. But there you go. Could be worse.

Sarah C: 44:04

We cope with strong people. And we

Andy: 44:07

Just to add a couple of minor ones when people are listening for for tips is I make sure I drink a lot about an hour before. And I've heard a lot of people say that because that gets your blood vessels slightly up , which makes it easier to put the cannula in. So about an hour before I'm thinking right, how long can I last without the toilet

Sarah C: 44:27

Yeah balancing it

Andy: 44:28

It may be different for male female but Yeah, drink a lot. And that really helps. Just yeah, the the other one for me is that I've heard people doing as well if they've got anxiety and want to take their mind off things actually during the MRI itself is going through A to Z's of things. So an A to Z of dogs or and Z to Z of Star Wars

Sarah C: 44:49

Good idea.

Betty: 44:50

Very good.

Andy: 44:51

I've done that when I've got most of it because X X Wing is quite good. and so and Yoda. So the difficult letters on Star Wars is quite good. So that can also if I'm like if I miss count or something, I'm like, oh, what can I do? I'll go right hang on A to Zed of dogs, you know alsation beagle then by the time you get to Zed, you've probably taken about a minute and your minds on something else. So that's also a useful trick if people want to just take their minds off things and just pick a subject that you like and see how it goes.

Sarah C: 45:23

That's a really good tip. I'm using that next time to keep my brain occupied definitely Like,

Andy: 45:29

you find this before you think I'm going to do eight out of Star Wars, you start going through in the kitchen. No, don't do that.

Sarah C: 45:36

Definitely, yeah, definitely won't be able to say the Star Wars movie. I don't think I'd get past a

Betty: 45:43

That's very good advice.

Sarah C: 45:44

Yeah, definitely. My only other thing I would say is that afterwards, make sure you drink plenty of water as well, because I wasn't given any advice after having the contrast ever. But other people sort of on the site and things said, Drink plenty of water, it just flushes it through the system. And yeah, you just feel a bit better with it. So that's what I would say as well.

Sarah: 46:02

And I would say perhaps plan, something nice to do afterwards, so that when you come out, you've got because you're so stressed out before that, you need that sort of stress reliever afterwards to go in, whether it's just going somewhere to have something nice to eat or planning a nice walk or something, just something where you can let that tension go. Because you're holding so much tension in your body at that point, going through all of that, that you need to have that kind of moment, don't you? Yeah,

Sarah C: 46:29

yeah, forgot about that. Because I do tend to go for just go for like hot chocolate with my husband, cuz he always takes me so we always should just go to sort of a nearby cafe and go for a drink. So yeah, that's definitely good.

Andy: 46:39

We sometimes go for what because you're not far away, but to fall down by the sea. So you're, you can look, while you even in the can even you can think right and a couple of hours, I'll be looking across the sea, the miles and miles and miles and you realise that you're encapsulated only for a short amount of time after there's going to be by the sea fresh air, you can look for miles and maybe grab an ice cream. And that, that helps me it might help other people go for a walk or do something different with that. your right Sarah So that really does help because then when you're when you're coming out and they put the canulla in when you go put the contrast I knew going into the last one, as well as knowing your three quarters of where they want to get on I'm gonna be on the beach soon, definitely is going to be nice. So that's a big help.

Betty: 47:21

Yeah, I mean, we always go for drive to our favourite place, we just go for that drive where we drive an awful lot. And we just sort of, you know, we just go there, but I find I come out. And of course, after the tension, I'm sort of high as a kite. So Oh, thank God, I did it. I did it. I did it. And then I find this as well with my letters and my results. And I'm absolutely sort of fine has gotten. That's great. And then I get this massive drop by the evening where I'm foul and angry. And I'm horrible. And I don't know what it is. It's not even sort of depression or crying. I'm just so angry by the end of the day. And it must just be the buildup of all the emotions and how your body handles. Yeah,

Sarah C: 47:59

I think it's just almost the exhaustion because you've just had so much focus on it. There's overload it's just like,

Andy: 48:06

yeah, it's mental exhaustion as well, isn't it? Yeah. Physically. Other than your heart going like you don't feel that bad. But yeah, it's just, um, like, groove. You both completely sort of you come out afterwards. You're buzzing. I've done it. Another 12 months. Fantastic. Yeah. And then yeah, need to fatigue sets in. And, again, it's worth making, what I try and do as well is not planning anything for the day after the MRI. Yeah. So the day after tomorrow is literally nothing. Because I know mentally, I'm going to be drained at the start of the day. So just know, leave me alone for today. Don't just read the papers, what's the TV catch up on Love Island and that kind of stuff?

Sarah C: 48:45

I didn;t have you as a love Island Viewer

Andy: 48:48

I'm joking. That pre planning that so that you actually stop organising anything else the day afterwards? That also was a big help, I find Yeah,

Betty: 49:00

I think because I I never stopped because I have my elderly mother and my husband just disabled, I think because I never stopped I never sort of get that chance to actually, you know, I'm on to the next thing and the next thing and the next thing is sort of a fitted that in in between, you know, but that's what I'd like to start addressing, because I've got to get some time where I can actually start thinking about myself now. So that that's really good advice. Take a day off. So if I say you know, my scan day, I'm gonna be hell and the next day, I don't want to hear anything. That's that's really good advice. Yeah.

Sarah: 49:28

Just decompression time, isn't it? It's allowing your whole body your emotional well being to just decompress and let go of that tension. So you know, it is a huge amount of tension. You're, you know, you're putting yourself under stress during that period of time. That it like you said, you have the high and there's all you know, when you have a high when you come out, there's gonna be a drop at some point.

Sarah C: 49:51

Yeah, definitely.

Sarah: 49:53

Is there anything that you want to add?

Sarah C: 49:56

I'd probably say if anyone's listening and they are having an MRI for the first time, try not to worry, we all go through it and we all survive it and just sort of Yeah, think about the sort of tips that we've talked about. And just make it how you want it to be don't let don't sort of be dictated to try and sort of make it how you need it to be to cope really.

Betty: 50:18

Yes, and let them know don't try and sort of be brave when I go in. I say you are gonna have to get me through this. And that way they you know, hopefully take on board that I'm terrified, basically. But yeah, so let let them know, don't just sit there and try and be really, really brave and keep quiet I just say I'm freaking about this. And, you know, because there was, you know, it is their day to day job and it's literally what they do all the time. So they just got to come in, sit down, I'm putting this in your arm dadada, you know, but if you actually stopped them, let them take a minute and just say this, I'm really struggling here. Hopefully, if they're good people, you know, know the job properly, they will take the time to help you and get you through it.

Sarah: 50:57

Brilliant advice, guys. Well, we're gonna wrap up. Now, I'd like to thank Sarah and Betty, particularly for taking the time out and Andy as well for being here. And yet, thank you both very much for sharing your experiences. 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 brain tumour charity.org or email our support team at support at the brain tumour charity.org And finally, before you go, if you enjoyed this podcast, please can you leave us a review on iTunes wherever you get your podcasts so we can reach more people and raise more awareness