Let's Talk About Brain Tumours

Episode 26 - What's it like to have a craniotomy?

• Episode 26

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In this episode, we talk to Rob, diagnosed with a grade 2 glioma, and Carly, with a grade 2 oligodendroglioma, about what it's like to have a craniotomy.  Both  Rob and Carly had an awake craniotomy while Andy who has a grade 2 meningioma had a craniotomy under a general anaesthetic

They share their experiences and things they found helpful.

You can find out more about craniotomies here

You can read more about Meningioma's here,  oligodendroglioma here and glioma's here

If you would like to talk to a member of the support team you can call 0808 800 0004 or email support@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

Sarah:

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. Welcome to the podcast. I'm Sarah, and I'm here with Andy. And we're going to be talking today to Carly and Rob about their experiences of having craniotomy. So welcome to the podcast. Carly, would you like to give a little introduction to yourself? Tell us a little bit about you and how you've come to be here today.

Carly:

Hello, yeah, thank you. So my name is Carly. I was initially diagnosed with a brain tumour following a one off seizure that I had in the middle of the night. And after being referred for an MRI scan, that's when the cause was detected as a brain tumour. So from that initial diagnosis, I was then referred for surgery, which I went ahead with in January 2018. I've been monitored ever since then. So for the past four and a half years, and although things remained fairly stable, there's just been very subtle bulking or growth to what they couldn't remove in initial surgery. And therefore, I'll be undergoing another awake craniotomy in just under two weeks time.

Sarah:

Wow. Another one? Gosh, sure. We're gonna have a conversation about that in a moment. Well, do you want to tell us a little bit about

Rob:

you? Yeah. Hi. So it's Rob. was last year, I was diagnosed, I had a seizure at work. In actual fact, whilst I was at work in my chair, and I dislocated my shoulder, and that was the thing I went to the hospital for. And then my shoulder got sorted, and then nothing else came from that. And it was a couple of weeks later that we went just for a short break at a caravan when I had a couple of they weren't seizures, but they were almost blank moments. That led to me going into the hospital again. And it was at that point after I think CT and MRI scan that they said I had a brain tumour. And so I had an awake craniotomy on first of July last year. But touch wood it all went very well. And in a bit of a similar way I've just monitored for for the period since so my next scan'll just be September, but like I say touch wood so far. So I've been I've been very good since

Sarah:

Thanks for um, so you both had incidental findings with your chambers. It was both a bit of a shock to suddenly find out that a seizure and then that's it you diagnosed?

Carly:

Yes. Yeah. Huge shock from Yeah, just like say one off seizure. Sounds similar for what Rob went through as well. It's such a huge shock because there's no other symptoms or very, yeah, very small kind of rare other side effects and might have been noticed before. For me, that's the type of brain tumour that I have.

Sarah:

So I'm going to hand over to Andy, and you're going to explain a little bit about what craniotomy is because you've also had a craniotomy, yourself, haven't you?

Andy:

I have Yeah, I'll try to explain it. I mean, mine was a meningioma, five years ago, discovered in a&e after I've been blue, likely down there with quite interesting symptoms. I guess I had it easy in the sense of mine was, I had the luxury of being asleep. Unlike you two guys, you had to sort of stay awake through the whole operation, I guess. But, so mine was a sort of five and a half hour operation in terms of a craniotomy. Generally, the description is that it's, it's where they have to go through your skull in some shape or form to get to the brain tumour that they're trying to take out. So it's no matter what the size or the location the craniotomy itself is not to be taken lightly because they're doing Dara said a term I was told they're taking power to see your head, which is not what your heads designed for and then doing some fairly delicate operations to your brain and then putting your head back together again afterwards, shall we say so, but quite often, if the tumour is of a certain size or location that can't be treated through other means. It's quite often the last last option is to craniotomy to to literally physically remove as much of the tumour as they can. So in terms of you guys know, my, my experience leading up to it was a bit like yourself shock. I never knew what brain tumour was until I was in a&e Someone tell me, you've got a large cranial mass and and then we have the MDT meeting, various other discussions and then they said, right, we're gonna have to do an operation to take it out. And I thought, Okay, what does that entail? I've been just to get your your views before I go through mine about what you were told beforehand, in terms of leading up to your operation,

Carly:

so I can explain my situation. So as I, as I discussed how to one off seizure, actually went to a&e immediately to be fully checked over with with standard routine, a&e tests, which were all fine and clear. So then I was just referred actually for an MRI was a few weeks down the line, and that's where the brain tumour was then detected. So following that, I was then referred to a specialist neuro team in a local hospital to where I live southmead in Bristol. And then I saw the head of their neuro team with regards to a follow up consultation. So at that point, as I mentioned, he he advised that surgery was required. I wasn't, it wasn't urgent that I had it straightaway, although he recommended if I didn't have it, or accept kind of that I needed it at that point, then I would have he said, it's likely that I would need it in a year or two. So that's when I opted to go in for the surgery.

Sarah:

What made you think I'm not going to wait the year? What was your thinking around that?

Carly:

So at this point in time, obviously before because it was before surgery, there wasn't any clear indication of exactly what it was at this point. So I couldn't get a full diagnosis of what type of tumour it was. However, he said it did it. It appeared to be slow growing, it appeared to be low grade. But for me, from my perspective, I didn't want to just leave it and just my immediate thought was, I just want it removed. And to be honest, there this is before I knew any more detail about the surgery, so I knew it would be awake craniotomy. But apart from that I, you know, I knew nothing, I had no background at all. So, I mean, it wouldn't have changed my opinion, or my decision. But knowing that I had a brain tumour what huge shock it was, I just wanted it taken care of.

Andy:

A lot of people say that they don't like the idea of something growing in their head. So if they have the choice, they prefer to have it. So the treated and taken out. So can I ask where yours was?

Carly:

Yes. So it's in the frontal left lobe of my brain, which is the alertness. When I was also going through a thing. I feel like I know it very well. Now, it manages speech movements. And it's actually kind of the emotional part of the brain as well, in terms of actually, just before my seizure happened, I woke up as if I'd had a nightmare, which I remember very clearly felt really uneasy, but obviously, you just assumed it was a nightmare, although I couldn't remember exactly what it was. And it wasn't until I thought I'd get up to go for a glass of water, that I have the seizure. But when I explained how this will happen to my neuro consultant, he advised that actually, that was obviously the start of the trigger for the seizure, because the frontal left lobe is, is yeah, in kind of managing all emotions and feelings as well as speech and movement. So because it was in that area of the brain, that's why I needed the awake craniotomy. So to have the speech and language and movement checks throughout the surgery,

Andy:

did they inform you of what might happen because mine was right parietial sort of back top right? And that controls a lot of the sort of movement and balance and spatial awareness. And my wife told me after my operation that as I was going down to theatre, one of the teams said to her, by the way, be prepared that he might not be able to walk when he comes out of theatre. Now, I was never told that before. But my wife was saying I'm like, in judgement, wondering what they said to you might be the sort of possible implications of your operation.

Carly:

Yeah. So in terms of my pre ops and leading up to surgery, when I when I told them that that was my decision to go ahead with the surgery, I then had pre ops booked in leading up to it. And yeah, I was fully informed from my consultant, and also the pre ops that I had were to with a speech and language therapist. It was also with the anaesthetist that will be with me throughout the whole surgery because obviously they're the ones that have to manage when you're awake. And obviously when you're more asleep. So you know, to really carefully manage the dose that you're given to make sure that you're with them when they need you to be that resting when they don't need to test. So that was quite detailed, actually, that I really appreciated because for me, I wanted to know as much detail as I could get. So I've knew exactly what would happen during surgery. But also, they did advise that because of that part of the brain can impact managers Speech, Language and movement that is fairly common, that I might have a short term speech impact, and potentially shunt some short term impacts to my movement, which actually, for me, personally, both did happen after surgery. It was very short term, I'd say, around two weeks before my speech came back in full movement. But to be totally honest, I felt very quite relaxed with my recovery, because they informed me of everything before. Obviously not an ideal situation, there was things that kind of happened in surgery, where they had to kind of stop, because of the things that they were noticing and the testing they were doing, I obviously wasn't performing the best of what they needed. So there was a slight implication, which caused the speech and movement impact, but like I say, for me personally, when I came around and recognised everything, I felt very calm because I was fully informed before the surgery.

Sarah:

I wonder whether Rob your experience is is more similar. So I wonder whether it's to do with the fact that you were having an awake craniotomy? Whereas, Andy, you were actually just asleep throughout, weren't you? And for an awake craniotomy they keep you awake for certain parts of the surgery, don't they? What was your experience? I just wonder whether that might be why the difference in information that you're given? Because obviously, if you're going to be awake during the surgery,

Rob:

yeah, you could, you could be right, it's it's very similar to what I've just heard that they were very clear to the whole process of it, in fairness to mine was on the left side, from the neuropsychologist speech as well, who went through went through everything that he would be doing whilst the surgery was ongoing, and no, almost in a way was getting to know you, so that he knew some of your interests a bit about you, because he would talk to me during the surgery, to make sure that the speech and response and my I say behaviour, that's possibly the wrong word but didn't change in a way that possibly affected the surgery as it was ongoing. But my meeting prior to the surgery, as well, they were my consultant, the surgeon, they were they were very calm about it, which really does put you at ease, I put me to ease sort of say sorry, because they ultimately are the experts. And it made me think well, because similarly, I didn't know anything, and I suppose whether that's with a lot of things that can happen to you, you don't always know a lot about them, unless yourself for somebody very close to you has been been affected. So they were very clear, very calm and prior to the operation and, and say during it as well. You know, I had every faith in everything that they said. And when we went with their their idea, because I think I think similarly, they didn't sayiI must 100% How they out. I could have waited or I could have they could have tried some some treatment instead, I think it was radiotherapy that they suggested. But again, they left that up to about my decision making once he'd explained what the surgery will be. And again, I think that is a massive help to understanding what's what's going on.

Andy:

I'm an wusss anyway, so even being in the hospital scares me. So the whole going in for an operation scared me but on the actual morning of the operation, I think because I knew it had to come out. I was surprisingly calm. And almost saying, Yeah, let's let's do this. Let's get this on. And I was pleasantly surprised. I thought I'd be absolutely bricking it. But actually on the morning of the operation or when I went down I was I was probably the calmest one in the car because I was just like, it's going to happen. You're in the hands of geniuses, you're on a kind of production line. What will happen will happen. My daughter said to me, bless her she said you've got an easy Dad because if you don't wake up, you won't know. We're the ones that were which sounds a bit harsh, but that actually made me feel quite at ease. I thought well, we just got a point actually. But the thought of actually being awake during the operation. I can't quite comprehend that. Because also for me, I think what they said before Your actual operation and give like a pre drug or whatever it is just to calm your nerves before we go down to theatre, so I don't remember too much about the actual going down there and coming back up. But how do you guys? How do you cope almost with, with knowing that you're going to be awake while they're messing around inside your head?

Rob:

Well, just another touching point. That's exactly right. What you what you daughter said there, in actual fact just, that's a bit of a side issue, I suppose in some ways, but obviously, if you've got people around you, you know, it can affect them as well. So in a lot of ways, I would say I was quite calm as well going into to the operation, mostly because of how they explained everything you knew exactly what was going to go on. And also, when when you're in the hospital going down to the operation, they, they just, they're chatting to you, just as are you just having a chat, a few little jokes, because obviously it's the team. It's not just one person is doing it. There's, there's there's the whole team there, which almost do an incredible job. But they they just put you at ease. And then obviously you whilst they do drill into start the operation, yeah, I was put to sleep. And then it's that point, then when they're ready, obviously, they wake you up and from there, but

Andy:

So you're actually asleep during the, the nasty bits in and then they wake you up. I didn't realise that I thought you kind of awake all the way through and you have to sort of feel this thing going through your head. Okay.

Carly:

I was the same for mine Rob. I was put asleep for that part as well.

Andy:

So were you calm doing the actual operation itself? Is it just because I think when I panic when I get anxious, are you just is it almost like a business like, this is going to happen? So I'll just go along with it.

Carly:

Yeah, I think I think what helps me before I went in, is that I did the hospital actually put me in touch with a guy who'd already been through awake craniotomy. So I feel like hopefully this podcast can be very helpful. And so I could speak to another patient. I've been through the same surgery. I was advised thought and I think it's good to be aware that all patients are different. I think everyone has a very different experience of everything in life. But this surgery is definitely definitely always different. For me personally, I don't remember a thing of being awake. And my surgery was 14 hours.

Sarah:

Wow 14 hours.

Carly:

Yeah, I think I think my the neurosurgeon who's the head of the teams that as long as one has ever done so. I honestly don't I vaguely remember like, a tiny, tiny part of speaking to the speech and language therapist, but honestly, apart from that, I remember nothing. Whereas the guy that had spoke to you before the surgery, he remembered most of it when when they woke him at different parts. So for me, yeah, it was it was fine.

Sarah:

Did they put you to they wake you up, put you to sleep to there? Is it kind of like a sleep awake? Sleep awake? kind of . as there doing things?

Carly:

Yeah. Well, for me again, Rob, I don't know if yours was similar. But yeah, for me, this is what they told me before, they would say they need the anesthetist you know, has to be very careful the dosage and what they're giving, because they need to wake you at certain parts. But then other parts, you know, they're happy for you to be asleep. So yeah, they need to wake in and put you to sleep according to how the surgery is going on what what particular thing that they are doing.

Rob:

Yeah, just thinking I think wasn't as long as that so mine must have been a bit of a quicker a quicker one than the 14 hours which was long time. But I think I was awake for most of it. But the only I only remember very, very small things. One as it progressed towards I think near the end of the operation. Uncomfortable that I suppose is is not to get people to think it's you know, it just I think that's the only thing he was more uncomfortable. I think they were obviously having to be in to try and get as much of the tumour out as the could and the chat with the guy was brought to earlier about it was it was things similar things too. He put a picture up and he wanted you to explain what the picture was. So it could be something as simple as that is a chair and just against the monitor the speech and if there was anything that was off with that. I think that's at that point they would alert the surgeon and they'd make a change or a stop from there but that's that in a similar way. I suppose that's how i remember it, I don't remember every single thing of it. I don't know if that's an actual thing for everybody or not, but

Sarah:

there's no pain at that point is just do you feel like pressure or?

Rob:

Well, just I'd say that just a slight bit of pressure just towards the end. I think that's all it was both pain. I don't remember any, any sort of pain throughout, if I'm honest,

Carly:

I know when when I went in, walked into the, into the surgery and led myself on the, on the table when they were starting to give me the Yeah, everything to kind of fall so I fell asleep for the initial part that Rob talked about when they actually start and drill into the skull, they were really persistent and even in the pre ops to say, if you, you know, we're gonna, we're gonna try and get your set it as possible. If you don't feel settled, if you can feel anything at all, then please just alert us straightaway. Because they don't want you to feel any pain or, you know, they want you to feel as comfortable as possible. So that, I mean, luckily, I didn't, but they were very persistent. You know, if you do then please tell us because they can manage it straightaway. So that that was I think that built confidence as well for the surgery.

Andy:

After the operation, how did you when you sort of came out of theatre? Did you have any pain then or discomfort? Or how were you feeling emotionally as well,

Carly:

it took for me personally, it took a good kind of couple of days to really be with it. I just felt obviously they put you on, you know, extra strong kind of pain relief and things. So I was just generally I think from as well from the surgery and from from that just really tired. So the first couple of days were, were okay, but again, I wasn't 100% with it, to be honest, when I did come around. I remember the is kind of just a had, like a bad headache to be honest. But they managed it well. And I just let them know, how was how I was feeling they'd obviously always come and check. And they'd give extra strong pain relief for for those things following surgery, depending how you're feeling.

Sarah:

How about you Rob ? What was what was it like for you?

Rob:

Yeah, that the same how, the the monitor how you are and, you know, ask if you have anything, you know, pains anywhere, then obviously be particularly with them. And they can manage that very well. If I'm honest, I don't remember actually having pain difficulties or headaches following it, which was obviously very fortunate in that way.

Sarah:

A lot of people feel really relieved to hear that because I think they automatically think Oh, my, you know, I'm gonna be in so much pain, and this is gonna be horrendous. How do they how are they going to manage that?

Rob:

I think with the with the extra medication, they give you the the you know, they would monitor that. And it was probably a bit hazy. I wasn't, you know, as clear as you would normally be in in a normal day, I suppose. But the recovery after it. In the first few days. I was in the hospital. I think I was in waiting on a Thursday and Sunday. Tea Time went home. So it wasn't in a huge amount of time. Really.

Sarah:

When you think it's brain surgery? No, you're not. Yeah, it's amazing that they that you can be out that quickly. Were you out as quickly Carly?

Carly:

No, no, it wasn't as quickly just because I had, like I said earlier, I had some impact to my speech, and slight impact movement. And although like I say it didn't, didn't bother me at all, but they obviously wanted to keep me in slightly longer to make sure I was obviously making a good recovery before they discharged me. So I went in for surgery on a Monday and I was out the following Tuesday. So I was in for eight nights. But yeah, I'd see the speech and language therapist who was in surgery with me I'd see her daily and she'd come and help me do very like simple exercises obviously for speech but it was amazing that she gave the time to come see me daily and yeah, I got amazing support to make you know make that recovery before I was discharged. So it didn't bother me to be honest because I felt more comfortable being in there and getting that you know that that attentive kind of service in and help before I left so for me it wasn't an issue. What about you Andy?

Andy:

For me it was it was quite bizarre because I went in on the first I have my sort of midday Thursday to about six ish, and then a couple of hours to come out sort of from to let all the anaesthetic wear off and I was sort of back up on the ward and I had no pain at all throughout not even had a headache. And I've got a they had to cut a section of my skull out which is six inches by six inches triangle so it's quite a big chunk. So I've got a hell of a scar but it's under the hairline so you can't see it. And I did have this vision of them during the operation using that bit their cuts off to keep their car keys in Before they then finished the operation and sort of stuck it back on with a couple of clips, I've got a couple of titanium clips in my head. But again, just for anyone worried, it doesn't set off any airport scanners or anything like that. So everything perfectly fine. But I was, I see you come out of, for me, you came out came round, I had a very tight white bandage around the head, which is fairly common. So that was the most uncomfortable thing as a whole process to be honest, on the other side of it. And then by about 10 o'clock, on the same day, I was actually texting people. So I felt absolutely with it fine, no problem at all. So literally, what three or four hours after the opera finished, I was obviously, kind of cloud nine because I couldn't move everything. And I could speak. And just a bit of a laugh. Actually, I'd had a running joke with my three kids who attained teenagers at the time, saying that you hear about operations where people have going for it. If they come out of a coma. They can speak Chinese or Mandarin or different language. So the first text I sent to anyone was to my three kids was a load of Chinese. And they said afterwards, they love that because they knew I was still me if literally, so I mean, for anyone who's having I mean, I had full asleep craniotomy, but I never had a headache afterwards. And then the only bit that slightly hurt was when they took the staples out about about a week afterwards. But that didn't really hurt. So as I went in the hospital, and I was armed to the teeth with paracetamol and all this thinking I was going to be in pain but not not a headache. Nothing. It was quite. I almost felt like no fraud. But it just like I couldn't believe I had that level of intrusion and operation and yet came out afterwards feeling just normal Yes, fatigued, but feeling quite normal.

Sarah:

You've had a mass in your head that shouldn't be there, you've had it removed? Do you feel it? Does it feel different? Like do you suddenly think Oh, actually, there's, there's a pressure released there? Do you feel that?

Andy:

Well, for me, sorry, because mine was quite big. No, not at all. No headaches, the only thing I did see was you get this clicking in your head. But then a few guys got it, which is quite common off and operation. And I'm told that's the liquid, sort of filling up the gaps where the brain was just quite bizarre, I genuinely didn't feel didn't feel a thing afterwards in terms of pressures Other than this, clicking in their head, which no one told me about before some thinking was that was that sort of thing? I've, I've heard many other people say that. It lasts about a week or so. It's like, what's what's going on? That's an odd thing. But other than that, no, what about you guys? Did you have any sort of feel any change in

Rob:

Personally, I didn't know to be honest. Again, the same pressure? with with the protective over in their head? And that that was that? There was no I always has always think, you know, it's not a simple operation, but what you've said earlier there have found what's you know, could be going on, and then he's taken out on everything that can, but then you've kind of feel like, well, they've done it now. And it's it's I don't really know how to explain that. It's just like, you know, as though it's the most be somebody else with some some doing having something done that has a greater effect on them. And obviously, for me, it was like you're in you don't go but that was my, my thoughts on it, not for the people looking after me me, they obviously were amazing. But for me, it was almost like, wow, it's it's done. You know, and if you at all prior to that, you just think well, wow, that's gonna take years and years for me to recover. It's gonna take years and years to be in the hospital. And everybody like you said earlier, everybody's situation and operation will be slightly different because we're all individuals, but I didn't have any of the headaches or the pain or anything like that following so, so very fortunate.

Carly:

Yeah, same same for me. I only had like say headaches just kind of straight after the surgery but but apart from like they quickly Yeah, quickly when and I literally feel Yeah, no different. And General recovery is very speedy. So yeah, it's very clever what they do, I think, you know, such a major surgery really, but it's, you kind of just go on then. Well, I know I have gone on kind of living my normal life again. Don't feel any different in myself at all.

Sarah:

And a question that people have asked me and I'm always like, Oh, I don't know. Like washing your hair. When you've got a scar. What do you do? Do you

Rob:

take forever (laughs)

Andy:

And can I say by the way, Rob has got a very nicely shiny head. way to describe it.

Rob:

Funnily enough, sorry, just to interrupt, funnily enough, that was one of the ways that calmed, or how they were calm when I first went in, because one of them said, I looked like a singer, and I can't think who he said. But I told them a story I had been told I look like Harry Hill in the past. But washing your hair is not a problem for me,

Carly:

It;s a good question, actually. Because just on the subject of hair being a girl, I, that was actually one of my I have to be honest, that was one of my main concerns leading up to the surgery, I was like, What are you going to do to my hair, and my speech and language therapist, she's a lady, she was amazing. And she actually said, I can't guarantee it. But when you go into the surgery, just ask your surgeon because she knows him, obviously very well. She said, ask your surgeon, if he could just leave your hair, and I'll be in there. And before he actually goes in fully, I will braid your hair around the area that they need to go into. Should I can't guarantee it. But if you just request it, I'll do what I can. And amazingly, when I came out and woke up, she'd braided my hair so neatly that it was literally just kind of down the side of my head. But just one shaved literally kind of one shade area down the side of my head. And the rest of my hair was was all still there in full. So I was so happy.

Sarah:

Yeah. Because it is a big thing is it is a huge thing.

Carly:

Yeah, yeah. So and then after the surgery, I just they just advised to not wash my hair for a week. I think it was until they remove the staples in, you know, from where they cut through. But when they've been removed, and they obviously confirm that everything had healed to a good standard, then yeah, it was I feel like I was very delicate, obviously with around the area still. But yeah, it wasn't long at all before could get back into the normal hair washing.

Sarah:

Listening to talking about it. I don't want to trivialise it but when you think about anyone thinking, oh my god, brain surgery, I'm gonna have you know, a craniotomy, they're gonna be someone's gonna be cutting in and doing something to my brain. But when you actually listen to you, it's amazing how well they do it and how well you recover. It just is amazing, isn't it?

Andy:

Yes, I'm just just for me on that on it is. And I would advise anyone going through it to not be fearful of it. But as we've said, everyone is different. So it depends what you've got and where it is. But don't be fearful of the actual craniotomy itself in the process around it. Because the people doing it are geniuses and they do this their day job. And is a very, yes, everyone's different. And there are issues that people do have, but the majority of them go well, and people make a very good recovery. I mean, just just on the hair thing, just because mine, people say to me, should I shave my hair before I go in? I'd say No, they'll, if they need to shave your head, they will shave it where they need to cut, so don't bother cutting your hair beforehand. Mine, they had to sort of shave the triangle, I guess, because I hadn't thought about it but they had to peel, peel the scalp back. And then they put it back in. So my wife was fantastic. Throughout and afterwards. So for the week afterwards, I'd advise people to wash your hair in baby shampoo. So it brought back memories of when I washed my kids. But yeah, so the baby shampoo and, and get your partner to just gently wash around the scar almost. And then, as Cary said, within about a week to two weeks. Once you once you if you have them your staples out, you're off and running, and my hair grew back within about three or four weeks, you know, the grown back and you didn't ever know what the what had happened. I was again pleasantly surprised shall we say but yes, it's cost me quite a few bunches of flowers since my wife was superb it sort of just looking after me because I just want it I'll come I'll wash it at all, or I won't bother washing it for a week. You can't do that. You got to wash it. So the baby shampoo is a definite good idea.

Sarah:

Absolutely. That if somebody was coming to come up to you now and say, I've got, you know, good to have craniotomy, this freaking me out, you know, I'm terrified. What would you say to them? What would your advice be?

Carly:

Um I would say obviously, it's it's normal to feel anxious. So don't try and just push those thoughts away. It's normal to feel anxious or worried. But I think kind of Yeah. Rest assured in a way that the people that are doing it for you. As Andy mentioned, that is their job. They do it daily. They're very professional and what they do, and if there's any concerns or you would like any more advice or you have questions, then I definitely approach your neuro team or any of anyone else that will be within the surgery, because there is such a big team of people. And it's just so normal to ring with queries or questions that I think the hospital or obviously, you know, brain tumour charity will be really, really helpful with. So I think try and stay as calm as possible. It's natural to feel anxious. If there's anything that you think you need to know more about, then just ask the question, but try not to go as a into too much detail because you don't know and no one can tell you what you're going to experience. Until you do so. Yeah, tried to the very top line, but but answer any questions that you may have to try and prepare for it.

Sarah:

What by you, Rob, is there anything that you would say to

Rob:

that I agree with all of that, to be fair, and I think if you do have any questions, don't feel like oh, it's a silly question. I can't ask that. If anything does come across your mind. And obviously, everybody's different to depending on what what family what friends what support they have in their own life anyway, but But you said, the neuro team that you that you're given, you know your story just there on how they're looked up to your hair, you're the most important person to them, right there whilst you're with them. And they will give you every every care that they can. And I think obviously, like you say, everybody is different, but try and go in as as calmly and as, as positively as you can. And like I say that team's there to do the very best for you. And they're incredibly skilled. So we're fingers crossed, everything always goes goes brilliant anyway, so overly worrying about it. And although it's easy to say it's easy to say, I don't mean anything by that overly worrying about it, though. You don't want that to cause you further concerns. Anything you want to know you can ask for, like you say from the charity or somebody else who you may know has had had something similar.

Sarah:

Is there anything that you would take to hospital you know, if you're going to be overnight, that you would now say I definitely would take I know Carly you're going in again,, are there things that you think I'm definitely taking this this time?

Carly:

Yeah, I took it before actually, but they did rec also recommended it to me before my first surgery, but a playlist is essential in my in my opinion. So whe, because obviously, when you're going through the awake craniotomy, when you go down into the theatre, when they start everything, you know, they can start your playlist if you take one and request it to be played, which they did for me before. And I'm going to do the same this time. I mean, to be honest, I don't know how long they play it for if you if you're waking up and they don't know if you're gonna remember or not, I'm not sure I'm not sure, if they played it, the whole thing cos I honestly don't remember being awake. But it definitely helps to calm me when I first got in there and they were commenting say how good the playlist that is definitely definitely for me anyway, that was that really helped on the day and I'm, I've already got my playlists ready to take in again. And to be honest, I think for me, just like kind of home comfort things, you know, very simple things, but just some comfy clothes to wear. If you're in there, you know, a few days before you're discharged, some snacks, anything that just makes you feel a bit more like a home

Sarah:

How about your Rob got anything that you were like, I comfort. wish I'd taken in or I'm glad I took this in.

Rob:

I wonder if I took a playlist if they'd have been singing whilst they were actually doing it. That would have been a nice thing to hear. I don't actually know if I took anything, I think we were talking a puzzle book for afterwards. And it was doing Sudoku and word searches and things like that. And whether that and honestly, I carried on doing that for a long time afterwards. And whether that was just a calming thing and a nice thing just to have a little bit of focus on and enjoy doing. I suppose it's taking in something that like you say the comfy clothes and something you're gonna feel that you like your best with.

Andy:

For me, it was what exactly what you guys said plus an extra long charger cable for your phone, because you might not be right next to a and I know that sounds daft. But you know, they're looking to take one of the little charger cables, it's a bit of a pain. And I do the same as Rob, I took a book of Sudoku's because I wanted out of curiosity to work to see if I could do the same level of sudoku as after my operation as before. Because that for me was quite a big deal. And thankfully I could and that helped me with my recovery because I thought well, I sort of my brains not being damaged in that respect. I can still do my sudoku that actually gave me quite a lot of confidence. And then just as Carly says comfy clothes, snacks, drinks, things like lemon squash, the little thing because the water gets a bit boring after a while, and a nice pillow as well. So take it in a pillow and, and earplugs because it's really noisy in hospital. If you've not been in one before, there's buzzers and bells and all sorts going off sort of thing. But once you've come around, you don't really care because you're there and you're okay sort of thing most people I should say. So, yeah, I think that that'd be my sort of my my take on it,

Sarah:

I think we'll be starting to wrap up now. So if there's anybody got any last words, or anything that they'd like to sort of, say,

Andy:

for me would be that's, I mean, I'm, I'm a normal, boring person. I've never been to hospital before other than when I was born, and my kids being born. So the thought of what I went through beforehand would have would scare me. But actually, when you go through it, it's not that hard. And I know everyone's different. And everyone's you know, not everyone has a lucky outcome as we have where we've, you've come out of the theatre, you come out the operation, and you've got on with your life. And you can live a full active life. So there is hope. But just to be aware that you're in the hands of, we've said it before you're in the hands of experts. And the actual day itself was probably the calmest I've felt since I was first diagnosed, and afterwards as well was was very calm. So try not to overly worry about it. Stay off Google, don't go on on YouTube. Because you'll scare yourself if you do, I think and just just trust the experts because they know what they're doing. It's their day job, you're in a production line. So you're just another one on that line. So don't feel like your operation is something that's bold, or brand new, or that's never been there before. Most of the operations people have are fairly typical and fairly common and therefore aren't anything to fear.

Carly:

Yeah, that's I totally agree with everything Andy just said, I think from Yeah, from my side, it's no matter kind of what thoughts are going through your mind, it's normal, for lots of things, you know, to be the thinking of lots. But just try and remain as positive as possible. That will help keep you calm on the day, it's normal to have the anxiety and don't try and push everything away. But except that they're all normal feelings and normal emotions. But that the surgery that you're going in for a lot of people have had done. You'll, you're with the experts, and I think, trust that you're in the best possible hands to have the best possible outcome. And one other thing that I was going to mention, which Andy did is, is don't google anything, that was actually advice that was given to me at first for my neurosurgeon, so I think that's also very important, because that could be another thing to make you feel so nervous and even more anxious. So yeah, try and do the best things possible to stay calm. And trust the hands that you're in on the day. And I think, hopefully, it won't take long for full recovery. And for you to get back to as as best normal kind of life that that you had before.

Rob:

Yeah, I mean, I'll just repeat everything they've said. It's absolutely spot on. I mean, I've said before everybody's situation can be different. But you you're in the hands of those, those skilled people. I mean, I was incredibly lucky, my wife and my kids took care of me afterwards. Interesting credibly, so and everybody, everybody's supportive network can be different. But that team that you're with, will, will do absolutely everything they can to make everything just as good for you. So I can never thank them enough. I'll never, never forget, forget them either. That's the level that they do it at. So yeah, that's probably the bestI have.

Sarah:

That's brilliant. That's perfect. It's been an absolute pleasure talking to you both Rob and Carly. Thank you so much for giving your time and sharing your experiences with everyone. I'm sure that there are a lot of people listening to this that are gonna really appreciate hearing and you've I hope so well comfort people and calmed quite a few people's nerves I should imagine.

Carly:

Yeah.

Sarah:

We hope you've 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