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Hello and welcome to podcast number 19 I believe we're on. So we are really, really motoring

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on. It's only been what three months now I've been doing this. Yeah about that. Yeah so

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yeah we're moving on quite quickly. On today's episode as you can see for those that are

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joining us on YouTube I have Lisa with me. Hello. We're gonna be talking today about

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my lumbar puncture that I had a few days ago and then we're gonna be coming away from the

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negativity type stuff and we're gonna be talking about the panto that we went to. We do it

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pretty much every year now. Yeah it's a tradition for our family. We do enjoy it, it's good

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fun and I must admit the panto cast, no Lisa very, very well by this point. Yes that will

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be discussed don't you worry. So to start with today as I say every single time thank

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you all for listening. I massively appreciate it. We're starting to pick up quite a few

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new listeners and each and every one of you is massively appreciated so thank you. This

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podcast will be released on Boxing Day so I have to say I hope you have all had an absolutely

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fantastic Christmas. I hope you've all eaten as much as you could possibly eat and I hope

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you've been well and truly spoiled and if you haven't I hope you've just had a cracking

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day because. Yeah just remembering the people that you've got around you because it's not

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the amount of presence that you've got it's the people that are there with you to share

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the experience of a family with. Absolutely correct, absolutely correct. You know no matter

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what just hope you've had a good day doing absolutely whatever you want to do. It really

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is that simple. So today I'm going to start with the lumber puncher that I had and being

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quite honest. Yeah I couldn't be with you because I'm poorly. That's right Lisa unfortunately

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she's not been very well bless her. She's a bit of a bit of a dodgy chest. Yeah I've

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got that winter lurgy and it's turned into a really bad chest infection so yeah that's

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not been good I'm on antibiotics for Christmas. You are. Good job you don't drink. Exactly.

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You have a cup of tea instead. Absolutely. But yeah so obviously Lisa couldn't be with

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me for the lumber puncher but in the days leading up I was getting a bit nervous. Yeah

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a little bit twitchy the night before and all. Yes absolutely I was incredibly nervous.

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Thankfully my dad was able to come with me. I'm going to try and keep the talk of the

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lumber puncher as sort of minimal as possible because I really want today to be quite positive

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and upbeat because of Christmas. It would be rude not to. So cut a long story short.

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We went along to the lumber puncher and I must admit we was taken in or I was taken

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in quite quickly. It was very much of a case we got there. I struggled to find where we

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were supposed to go so I had to ring. I spoke to my MS coordinator on the phone. She told

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me where to go and while I'm sat down I've been sat down literally a minute. Dad had

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gone to go and book me in and my MS nurse come out she come and got me took me in. We

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sat down we had a conversation and obviously she took the details that we needed. I signed

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the consent all the basic stuff and then it came time for the actual act of the lumber

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puncture itself. Yes you can tell from the laughs it was interesting. Now I've always

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been quite terrified of needles. Nobody likes them but it's just you're a bit of a woman.

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Very much so. It really was a case of I did all I can to make sure I didn't see the needle.

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I am quite lucky because my MS nurse who performed the procedure she's actually the only one

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in the county that uses what they class as the thinner needle which actually reduces

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the chance of headaches apparently by 30%. You've not even got any bruising. No I'll

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be honest I've been really lucky. No headache nothing and I must admit we'd gone out and

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bought a load of energy drinks which anyone that knows me knows I do not drink energy

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drinks. No. So I'd done all of that sort of stuff just to make sure. I've been alright

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I've been very very lucky. First night though you was really oh I can't settle. You were

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moaning it was hurting. It was yeah. And then you've managed to get yourself not quite comfy

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but a little bit better than it was and then the next thing you was asleep. Yep absolutely.

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Your dad didn't move because normally you're a right fidget so you're like a little parrot

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but you literally just laid still and your dad didn't move he's like oh I can't move.

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It was really uncomfortable really uncomfortable and I've got to be honest my left leg I'll

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explain now why my left leg was a little bit strange. So we sat there and I'm sat up for

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the lumbar puncture sort of off the edge of the bed with my feet on a chair. They've pulled

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my shirt up and they went to try and put the needle in. Not a problem needle went in perfectly

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fine except for the fact they touched a nerve. I've got to be totally honest they touched

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this nerve and I have never felt anything like it in my life. There was this pain it

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was like a really odd electric shocky type hot pain shot down my left thigh right the

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way down into my toes. I screamed. Yeah your dad heard didn't he? Yep my dad was in the

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waiting room and he heard this scream and I've got to be honest I couldn't even try

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and recreate it if I tried. There was a few swear words. Yeah there was a good few. We

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won't say them but yeah there was quite a few swear words and your dad said it was religiously

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that's what he could hear. Yes absolutely I mean I swore over and over and over again

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at least four times maybe more and I must admit I was so embarrassed. My reaction was

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unreal as they just screamed like that. I made the MS nurse jump. I made the MS coordinator

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in the room jump. I felt so bad I felt so guilty for it because they were just trying

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to help me. I just couldn't I couldn't stop myself. I'll say that feeling that went through

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my leg was unbelievable and I've tried to explain it to you since haven't I? No matter

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what I try and explain it doesn't do it justice. It genuinely doesn't do it justice at all.

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But yeah I mean that night yeah at least I tell you I was unable to move purely and simply

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because I was scared to move but yeah a couple of days after I was very uncomfortable actually

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on that leg and my back. Yeah about 48 hours were now. You're still a little bit wobbly.

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Even now I'll be honest with you I'm still not perfect but I'm getting there. Yeah you've

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been back to work today. Yes. But I've not really seen you much because you've been at

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work but what I've seen at Iron you're still wobbly but not as much as what you had been

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just before you obviously you went back to work. Yeah absolutely so hopefully fingers

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crossed we might be getting somewhere fingers crossed yeah but yeah I mean that's where

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we are I've been told I've got an eight week wait and then hopefully it's on the road to

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finding out if we can actually get you some treatment. Oh yes please. Because that's the

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one thing that seems to be holding up quite a lot of people at the minute isn't it is

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treatment. Yes it is it is most definitely and I've got to say it I'm gonna say it I

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do think it's absolutely disgusting making anybody wait the amount of time that not just

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me anyone currently is having to wait for these sort of things because it's not just

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the physical effects it's the mental effects. And it's not just the person it's the people

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that are around them because we're seeing it all the time and we haven't got a clue

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how we help we just sort of wing it but then we think are we actually making it worse and

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we don't know but we're just trying to do what we can to support the person that is

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actually dealing with this day to day and they don't tell you exactly how they feel

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especially if they're like you but we know and it's not nice seeing you you know you

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have deteriorated quite a lot and you know we've just got to learn that it's just a waiting

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game again. It is and that to be honest with you that's all it seems to be these days is

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a waiting game and again I'm don't get me wrong I'm not saying I'm in the worst position

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than anyone else but all of us that are having to sit and wait for things actually. It's

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hard for all of you. It's totally out of line I can totally understand that yeah there's

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always going to be a bit of a wait it's the amount of time that you've got to wait for

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this stuff it's not fair. It's not just that it's the case of you're not really getting

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much communication either are you? No not unless I initiate it and that's being totally

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honest unless I initiate communication it's pretty much radio silence if I'm honest and

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it's not on and I'll be honest with you on that I do think and I'm going to say it the

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system needs to change. It genuinely does. Yeah big time because we're not the first

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people to be stuck in a bit of a hole of the unknown you know there's thousands out there

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that are in the same situation that may be a little bit too worried to actually say you

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know look what is going on because they might not have that you know immediate support with

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them so it's just a case of I'll just have to accept it. Yep and that's kind of where

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everyone is we have just got to accept it. And I know we're all in the same boat aren't

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we we're all in really the same boat in the same storm or whatever but it doesn't make

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it any easier for you know for you or for that person or anybody else because all you

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want is just the road to a little bit of treatment so you can have a little bit of you. Yeah

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yeah exactly just you know slow the roll a little bit you know slow the roll because at the moment

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as Lisa says and I've got to be honest I'm falling off a cliff currently with with how things are

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and yeah I'll put on a full face. Well you're hanging you're not falling because I've got you.

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Grip a bit tighter but yeah no genuinely that's that's where we are.

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Eight weeks fingers crossed we can start looking towards the treatment that they've already told

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me they're expecting me to have so fingers crossed. Right let's get let's get a little

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bit more cheerful. Panto. It was Friday. It was it was we're recording this episode this is Christmas

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Eve so it is Saturday so it was last night we went yeah time this episode comes out it's

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going to be Boxing Day so go on what's your take on the Panto? Oh it's amazing

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I mean I may as well just be in there. Yes. As soon as they see me oh my I put them off

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I don't know why I just put them off they forget the lines and then they have to make it up as

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they're going along because they're like yep there she is here she is again. Genuinely it's true

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it genuinely it's true trouble is Lisa and a couple of other family members were sat in

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the front row and there's quite a few of us that went so we had to sort of stretch out amongst

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effectively three rows yeah there was we didn't say all the rows but there was one two three

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five of us at the front yep and then there was one two three four five of us at the back yeah

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and then there was a three of you yeah so yeah 13 of us all in and as I say with with regards to

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Lisa as soon as they come on stage they see her face and it's because of her laugh no it's not

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it's because of her laugh oh no it's not oh yes it is she starts laughing and that's it

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can't concentrate because honestly she sounds like a wild animal when she's laughing well it's a

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mixture of all because yeah I laughed like a normal person and then Covid hit yeah I got really ill

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with Covid back in 2020 and I'm a bit of I'm a bit of everything yeah quite right I can laugh

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like a pig a donkey a seal you name it I can laugh like it it's so true honestly I would do it now

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but I'm a bit poorly yeah one day I promise you will all hear her laugh that is a guarantee one

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day we'll make sure that happens but yeah it was brilliant so it was Rapunzel we went to go and see

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and I'll be honest with you it was fantastic yeah I mean so we go every year now and wouldn't miss

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it for the world honestly it's just such a fun night and I've got to say there was a couple of

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instances where they made little jokes and things and honestly I'm sitting there and I've almost got

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tears rolling down my eyes I mean it was absolutely hilarious one of the the women bless her she

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she kind of fluffed her lines a little bit yeah she made a massive uh a boo boo with it didn't

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she but they had to keep rolling with it and they did it was brilliant they just sort of had each

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other's back on it didn't they they were all together absolutely fantastic and one of the lads in there

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they was doing these tongue twisters it was going on for about five minutes yeah a little

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bit longer than that and it didn't miss a beat and it was all beginning with an s

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genuinely didn't miss a beat absolutely superb and they even said that that wasn't even rehearsed

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yeah because the one that was doing it he he really wanted to do it didn't he in rehearsals

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yep and because it wasn't about him they're sort of like okay well we're just going to now let you

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do it and he was like oh okay and he got it incredible genuinely absolutely incredible I mean

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uh quite honestly the performance itself was superb it really was but the little bits and pieces

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that was in there that actually was off the cuff yeah it just made it a little bit more

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different they did they did I mean I don't know if I'm supposed to say the name of the the company

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on here I'm gonna say anyway because they deserve a shout out polka dot pantomimes yeah absolutely

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superb never ever let us down any year we've gone to go and see one of their pantomimes we always

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come out ready to book the next one most definitely genuinely superb I honestly could not complement

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it any higher that would be like the only thing that we would all miss really wouldn't it yeah

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absolutely without a doubt genuinely I honestly I can't sit here and recommend it any higher than I

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am it really is just fantastic you come out of there with a smile beaming from ear to ear

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and it sort of makes our Christmas a little bit don't it they always take the time even like when

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obviously one of them was still on there and they was meant to be going around the curtain they were

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still having a chat with me and it's all like you need to get going but no they always take the time

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they do just like talk they do I mean even to the point they like to shoot shoot water pistols

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all the time brilliant me yes not saying you deserve it but you deserve it no I do not

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but yeah no honestly absolutely fantastic such a good night obviously it's family time and it

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I can't beat it we are very much family people you know tomorrow Christmas day

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we've got family over and again we can't wait I mean there's a good chunk of us

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we've got Christmas dinner to cook for a large amount we should have said

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we do you mean Lisa's got yeah Lisa and dad they've got Christmas dinner to cook

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they do it fantastic every year it'd be wrong for anyone else to try and get involved

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oh no it'd be good because yeah that's it everyone tell him so me and his dad can have a day off there

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we'll do a poll at the end of it shall we oh no I wouldn't go that far come on but no genuinely

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we are family people really can't wait for Christmas and again I mean from our point of view

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it's kind of what we live for the family time and it yeah it really is it's what we enjoy

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it's been a bit of a stranger anyway and I don't think anyone's really feeling Christmassy

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not just you know people I've spoken to but I think it's people that I haven't really spoken

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to either I mean I popped into one of the shops today and even their sent they don't feel it

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and obviously I'm missing my mum and dad a lot more this year obviously it is it is hard

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yeah yeah most definitely yeah it really is from our point of view as a family and I have to be

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honest it's actually probably been one of the worst possible years for me I'm 39 years old

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for me personally and I'm not just talking the MS we're talking there's been other bits and pieces

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going on it's probably the worst year of my life I've been honest it really is a bit of a turbulent

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year it has yeah so looking forward to getting the next two weeks out the way we can start our new

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year quite right absolutely and a fresh start and let's start looking forward to what next year

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brings yeah definitely hopefully it's better than this year we can't get much worse

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we sure oh there she goes oh I told you nearly heard it oh oh no good she's calm

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no that's a shame I don't have an asthma attack no please don't right okay I think that will do it

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for today again I genuinely hope you've all had a fantastic Christmas yeah from our family to your

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family Merry Christmas a bone and a dollar a bone and yes that's Merry Christmas and a happy new

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game in Italian have a great Christmas bye speak soon bye bye you