ALS - To The Moon and Back — Episode 17

This episode starts with one of those brutally honest check-ins that probably sums up life with ALS better than anything polished ever could: “Yeah, so when I said I was good… I lied.” 

Lisa talks openly about the strange balancing act of feeling hopeful and encouraged by genuine improvements — better coordination, less spasticity, stronger core function and positive signs from physios — while also navigating the absolute exhaustion that comes from simply trying to keep living a normal life. Dog trials, birthdays, friends, noise, conversations, medical appointments… sometimes it all just becomes too much. 

A huge part of this episode centres around the emotional and physical toll of ongoing infusion treatments and the reality of being repeatedly used as a training “guinea pig” for port access procedures. There’s frustration, tears, dark humour and a really important conversation about advocating for yourself medically — especially when your body is already carrying more than enough. Portia, as always, manages to balance fierce protectiveness with hilariously inappropriate commentary, including the unforgettable line about nurses with cataracts probably not being ideal for precision needlework. 

But this episode isn’t all heavy. Far from it.

There’s talk of skiing dreams with “spaghetti legs,” Paris adventures, Tom Cruise-induced histamine reactions, drag-queen engineering solutions involving hot glue guns, mouldy blinds, woo-woo full moon energy, introverts pretending to be extroverts, and the ongoing reality that humour remains one of the best survival mechanisms available to human beings. 

There’s also a deeper thread running underneath the laughs — learning when to stop, when to say no, when to rest, and when to give yourself grace instead of constantly pushing through. 

Transcript

SPEAKER_03 0:14

Welcome to ALS to the Men and Back. I'm Lisa Wright, and my dear friend Portia Turbo joins me each week, and we're trying to do one each week.

SPEAKER_04 0:24

We'll see how we go. We try and be honest, very ridiculous on a regular basis, and it's a conversation about living with ALS. But we also end up talking about travel, art, perfume. We also talk about ALS again, the treatments, the timelines, the science, the humour that keeps us sane. We talk about what's hard, what helps, and how to keep living fully in the middle of it all. So if you're joining it, please subscribe, share, and leave us a review. If you really hate it, that's okay. Just pretend you never heard of us. Thank you.

SPEAKER_01 1:00

You're always in the nude when I think of you, Porsche. Oh, the recording started. We can't talk about that anymore. Hello, Lisa. Oh my god.

SPEAKER_04 1:12

Yeah, so when I said um I was good, I lied. I uh bit of a dick morning this morning, but look, I I'm pretty good. I think um I think and keeping in mind that ALS moves up and down, um I have got better coordination in my legs, according to Mark and my physio that comes.

SPEAKER_01 1:39

Well, that's important for getting them over your shoulders.

SPEAKER_04 1:43

Yeah, yeah. Some things never change. Um and um and my other physio that I see up at Norellan, yeah, he made the comment. Oh, he goes, You're much more easy to maneuver around on the table. He said, Your core is working better. Wow, yeah, I know. So I'm choosing to take that as a good sign that my drug trial and all the other things I'm doing is working. Right, yeah, but I had a busy three days. Like um, Oni Dog went off to a trial down at Nara, and um he's such a derp. But it was fun, and it was fun, and it was fun to get out and see everybody, and as you can imagine, there's people I haven't seen for a while, and they want to have a chat with you, and my brain is working so much better than it was eight months ago. Fantastic! Yeah, but I get to a certain point where lots of background noise, lots of talking, and I just go, I can't think anymore. I need a rest.

SPEAKER_01 3:04

And then So this just sounds like an introversion.

SPEAKER_04 3:08

Well, I've you know, I say to people all the time, I actually am an introvert. And and people go, no way, and I go, Yeah, I am. I need to be away in order to recoup, and then I can go out and be very social and extroverted, but I do need that alone time. Whereas Mark loves to be out with people all the time, right? Yep.

SPEAKER_01 3:35

So I need I need a balance.

SPEAKER_04 3:38

Yeah, I can I can imagine.

unknown 3:41

Yeah.

SPEAKER_01 3:41

So Jin was quite surprised that I was an extroverted introvert, which is probably kind of like what I am, which is why we it's why we snap so well, babe.

SPEAKER_04 3:54

So so yesterday morning, um, a friend who was at the trial, she came up and stayed the night, and I thought we'd have a short chat, and we ended up having a long chat, which was absolutely wonderful to catch up and have a whinge and have a cheer about in the world.

SPEAKER_01 4:14

It's nice to have fresh ears, yeah.

SPEAKER_04 4:19

Frankie, thank you. It was a great chat. Um, and then I went off to a 70th birthday, and it was great, but by that stage my brain was going, you've done way too much.

unknown 4:35

Right.

SPEAKER_04 4:36

And and then they did this absolutely sensational version of Lola set to the name of the guy whose birthday it was, which is Scotty, and it's actually his birthday today. Happy birthday. Happy birthday, Scotty! Yay, may the fourth be with you, and um, and anyway, they changed it all about his life, but to Lola, it was very, very funny, and the whole crowd of people at the party had to sing Scott Scott Scott Scotty. It was really, really, really fun. And as someone who has a 60th next month at your MC, I'm Oh great.

SPEAKER_01 5:15

Am I have I put the date in the thing?

SPEAKER_04 5:17

Oh, I asked you ages ago.

SPEAKER_01 5:19

Well, that doesn't mean uh we will talk about that when we get offline.

SPEAKER_04 5:22

Yeah, yeah, but I'm pretty sure you said yes about 10 months ago because as long as it's in the diary, it's yeah, yeah. Okay, great. And it was, it was just a really beautiful party, and um um Jill listens to this podcast, and Jill you knocked it out of the ballpark. It was a great party, woman. Um, and so by the time I got home, my brain was just going, I can't, I can't even, and so this morning I woke up at six and Kayla, who speaking of May the 4th birthdays, Kayla's partner is having a baby today. Well, induction starts today. Wow, so um, yeah, so that's very exciting for them too. So um their life is over. Um, yeah, well, anyway, I'll let them I'll let him decide about that.

SPEAKER_00 6:26

Let them be happy. Just let them be happy.

SPEAKER_04 6:30

And so anyway, so yeah, that baby should be arriving anytime. And um I woke up and I was just like, can't even, and it's a new day for infusions. And last week over at Barrel Community Health, I had three port accesses, which I normally only have one. Um, yeah, look, long story short, um, the port was accidentally removed. I know, yeah, I know, I know. And look, I'm pretty sure no one over there listens to the podcast, or maybe they do.

SPEAKER_00 7:14

I hope they do.

SPEAKER_04 7:15

But the poor love who accidentally removed the port needle, um, she she said, Oh, I'm gonna have to put the port in again. And then she said, I'm having cataract surgery next week.

SPEAKER_01 7:29

She never did.

SPEAKER_03 7:33

And I said, Well, I just said, Well, you and I said, Well, you're not doing it.

SPEAKER_00 7:44

So, anyway, you can fuck off. And when you get there, fuck off some more.

SPEAKER_04 7:52

And um, and she was just an apologetic, bless her, and um, but I just said afterwards, I said it really does not make you feel more comfortable when the person putting the needle into the port can't thank you.

SPEAKER_01 8:13

What do you do? What do you do for a living? I'm a I'm a nurse. Oh, and how's that been with your cataract? Oh my god. Incompetence squared.

SPEAKER_04 8:32

Poor love. I felt I kind of felt bad for her, but can you stop feeling bad for her?

SPEAKER_01 8:37

She should not have been doing that.

SPEAKER_04 8:40

Yeah, exactly.

SPEAKER_00 8:42

Anyway, um and then it's like something out of the hitchhiker's guide of the galaxy, isn't it?

SPEAKER_04 8:57

Oh god. So um this morning I get there and I was already feeling a little bit like girl, you just you just lost it.

SPEAKER_01 9:11

So you already got there, sorry. Sorry, Jesus.

SPEAKER_04 9:16

So I was my brain was already saying, girl, you did too much over the last three days. And so I got up this morning, wasn't feeling particularly like I wanted to head into another round of infusions. Yep. So it's week two, so infusion six to ten. And anyway, oh gosh, I've been laughing so hard. I've got to get my breath. So I get in there, and um again last week they had I'm not gonna say they were trainees, but they had to get their competency signed off. So I was the guinea pig, and Mark was starting to get jack of it by Wednesday. Yes, and and I get it, and today I was jack of it because they had another beautiful person in there to put the needle in. And yes, I get it, people have to learn this competency. Three goes, and no blood was coming out. So when they put the needle in your port, yeah, they draw back, so they do what is called a heparin lock to stop clotting in the line, and they pull five mils of blood that tells me it tells them it's open and working. Then they shove five mils of saline in, and then they hook you up, right? So they clear the line essentially, and um, so anyway, I by the time they were going to try for the fourth, I just said, Look, this is too painful. They're not using any old gauge of needle, it is a crowbar that they're putting in. And this was now heading towards the fourth, and I said no. And I said, Can you do a cannula? Of which I now have a hematoma on the back of my hand.

SPEAKER_00 11:14

Of course you do.

SPEAKER_04 11:16

Yeah, and they said, Okay, well, that's fine. And well, I just started to feel pretty emotional, it just was getting too much, and I'd already headed in there feeling like I'd overdone it on the weekend, and anyway, he couldn't get the cannula in, and then he said that he wanted to do a second cannula. At that point, I said no. Yep, said we're gonna stop for the day and I'm gonna go home. They really, really wanted me to go to the ED and get the portah accessed and head on, and I said, nah. I said, last time I went to the ED, I sat there, they put the portah in, and then I sat there for four hours. And they said, No, no, you'll go straight through, we'll call ahead, you'll jump the queue. And I said, I've heard it before, I'm not doing it. Right. So I called Mark by this stage, I was crying. Oh I know I was, I was crying my heart out, and um they felt very small and awful, and well earned. Well, they they fucked up today. Yeah, they did. Yeah, they fucked up, and um, and so anyway, I s they said, Well, our job is to get the drug into you, and we need to find a way to do it. And I said, Look, I have 14 days to get 10 doses in. I said, I am well within the 14 days if I go home today and just go, yeah, nah. You know, it didn't work. And I said to them, I understand. Mark was great, he said, he said, look, Lisa was here last week, it seemed like there was a lot of people getting their certification around accessing Lisa's port. And at that point, the nurse educator, who was a lovely man, he said, Oh no, no, that's not the case at all, a case at all, but it is the fucking case, it is and so anyway, I've come home and doing much more wonderful fun things like talk to you.

SPEAKER_01 13:28

I'm so sorry you went through that, Melissa. What a pain.

SPEAKER_04 13:32

Yeah, I won't hide it. I was sad and in my cups, and yeah, well, you know, and you know, wouldn't it have been nice if he this lovely man had said you're right, you're right.

SPEAKER_01 13:51

We have a bunch of trainees. Um I'm so sorry that this has happened to you. Yeah, uh, but we have to train them. Yeah, and you could go, I get it, but not today and not on this body. I'm leaving.

SPEAKER_04 14:07

Yeah, I know, and wouldn't that be the honest, wonderful conversation? Yeah, really. Oh no, no, we're not doing that. We fucking are doing it.

SPEAKER_01 14:16

And and I'd I'd prefer someone learning than the blind person. Thanks for having me.

SPEAKER_04 14:22

Well, I did raise it with him. I said, Oh, look, you know, I won't say her name on air, but um, and she is she's a sweet lady who I think has a heart of gold, sure, who probably should be not doing portaf access while she's five days out from cataract surgery. Yes, she is Joyce.

SPEAKER_01 14:48

But being lovely does not mean you're competent.

SPEAKER_04 14:52

No, no. When we got to the car, Mark said, I want to call our health fund and go back to private nursing.

SPEAKER_01 15:00

And yeah, right.

SPEAKER_04 15:01

I yeah, he was like, No, had it. Yep. I was like, no, I think what we do. What happened is that we were having appointments where one person was the person that saw us all the time. So I'd get in there, eight o'clock, Monday to Friday, and it worked like a charm. Right. Management has changed, and they now have been sending us a text with the list of appointments. The nurse is different every bloody time, and um, which is not a problem, you know. Like most of them are great.

SPEAKER_01 15:39

And if they can do their job.

SPEAKER_04 15:41

Yeah, if they can do the job, and I don't mind being tr them saying, look, we're training people for their competency at the moment, like you just pointed out. Um, and I can say, All right, we tried once, that's all you're getting. Yeah, go back second, third, and now fourth, for the first time.

SPEAKER_01 15:59

But you're yeah, yeah, you're welcome to try me once every time.

SPEAKER_04 16:04

Yeah.

SPEAKER_01 16:05

Yeah. But if if they can't do it first go, then I need a professional.

SPEAKER_04 16:10

Thank you. Thank you very much. Yeah.

SPEAKER_01 16:14

I don't think that's unfair, Lisa.

SPEAKER_04 16:16

It's not unfair, and I think that's probably um well this will go down into my notes at the clinic this episode.

SPEAKER_02 16:27

Yeah.

SPEAKER_04 16:28

And it will be interesting. They wanted us to call before close of business today, um, which we'll probably do, and I'll decide whether or not I feel like I want to go through it tomorrow. I've got Saturday and Sunday up my sleeve to get the infusion in. So if I need another day to just go, you know what? I need a break.

SPEAKER_01 16:53

Lisa, are you documenting all of this?

SPEAKER_04 16:56

I think I need to start documenting it.

SPEAKER_01 16:59

You absolutely do. You you need to do a diary.

SPEAKER_04 17:03

Yeah.

SPEAKER_01 17:04

You can do it online, you can just speak it in, and the AI will turn it into okay.

SPEAKER_04 17:10

No, it's a good idea. Even if it's to get it out of my head off my chest, you know.

SPEAKER_01 17:15

Well, there's gonna come a time when you're gonna need to say, and this is from this date.

SPEAKER_04 17:24

Yeah.

SPEAKER_01 17:25

I didn't do it up to then, but I started on this date when it got so bad that I knew I needed to have a record of exactly what happened, what this person said to you, what happened, like four times with the cannula, all of that stuff.

SPEAKER_04 17:40

I need to make it clear, no one was rude, no one was offensive.

SPEAKER_01 17:45

Well, you keep saying this.

SPEAKER_04 17:47

There's an expectation that I would be okay with four needles going in through my chest. It's not okay. You can't put people through it. And um anyhow, yeah. I think um I am when I said no to going round to Kaz, yes, I said and I said I sat there for four hours at the beginning of the year. That was the time I was picking up my granddaughter and I was sitting there waiting, waiting, waiting, and it's demoralizing. And I I have made the decision to talk to my new neurologist, which is another bit of information, um, about she has got patients who do this Monday to Friday, have a week off, and then do Monday to Friday. Right. And so you need 14 doses in 28 days. So I find that pretty interesting because I thought maybe that would give me the opportunity to psych myself up for the next round. Um, and then it doesn't feel like such a big slog. I find I can do Monday to Friday pretty quick. Sure. But one to five, it's the six to ten that drags on. So we'll see. We'll see. Maybe my tablet will be working so well that I'm out. I had the weirdest dream last night.

SPEAKER_01 19:18

Tell me about it right now.

SPEAKER_04 19:20

I dreamt I was skiing, and well, that's weird to start with. Well, considering my legs are like spaghetti. Um, so I was out skiing and I had to ski to this spot to get down to another location. And Mark said, I'll meet you there. So I get there, and someone from the resort goes, Oh, you've just got to go down those stairs. And I looked at Mark and I said, There's no way I can do those stairs with my legs, I'll just ski. And so I couldn't walk, but I guess.

SPEAKER_01 19:59

Do you know that I've never skied?

SPEAKER_04 20:02

Really?

SPEAKER_01 20:02

No, never, never, never.

SPEAKER_04 20:04

Have you wanted to ski?

SPEAKER_01 20:06

No.

SPEAKER_04 20:07

Well, there's there's a correlation between those two things.

SPEAKER_01 20:12

So, you know, the first time snow fell on my head was 2013 at Versailles.

SPEAKER_04 20:20

Oh, you know, the funny thing, as you were saying that, in my head I went, I bet it's gonna be Paris. Yep. Versailles, close enough.

SPEAKER_01 20:29

Oh still in Paris's bounds.

SPEAKER_04 20:31

Yeah, isn't that just the best place? I love Versailles.

SPEAKER_01 20:34

Me too.

SPEAKER_04 20:35

It was stinking hot the day we went there last time, and I made a picnic complete with baguette. Oh wow, and I and we went and sat in the gardens in the shade and had a little picnic. There are so many places there where there's just like little nooks where you sort of sit down, and we just had the best day. Mark was feeling a bit jet-lagged and headache, and I momentarily put my distaste for Tom Cruise on pause, and we went to the Mission Impossible that had him in it in Paris.

SPEAKER_02 21:11

Sure.

SPEAKER_04 21:12

And so he's doing all these crazy stunts in Paris, and there we are about a kilometre from the Eiffel Tower. What's the place just across the river that is that huge building?

SPEAKER_01 21:27

Trocadero?

unknown 21:28

Yeah.

SPEAKER_04 21:28

Might be.

SPEAKER_01 21:29

That you look straight at the Eiffel Tower and you take it. Yeah, yeah, yeah, yeah.

SPEAKER_04 21:32

Yeah. So just near there's a movie theatre, and we were sitting in there in air-conditioned comfort because Mike was feeling a bit dusty. And we watched Paris while in Paris with Tom Cruise flipping about.

SPEAKER_01 21:49

I really like Tom Cruise.

SPEAKER_04 21:51

See, I'm allergic to him.

SPEAKER_01 21:53

And that's okay.

SPEAKER_04 21:53

That's okay. I have a histamine reaction.

SPEAKER_00 21:57

I come out in hives.

SPEAKER_04 22:01

I don't even know what I think it was around the time, like I could forgive him for a lot of stuff, but it was when he was jumping on the couch around the time he was madly in love with Katie Holmes. Like he was trying like Fredo Bacon's on the lounge.

SPEAKER_01 22:21

You know that Oprah sold that couch um in a charity auction.

SPEAKER_04 22:28

Wow.

SPEAKER_01 22:29

Yeah, yeah, yeah.

SPEAKER_04 22:30

Someone like me could burn it.

SPEAKER_01 22:35

So look, I really like Tom Cruise, but I was very sad when his face stopped moving properly.

SPEAKER_03 22:40

Yeah. Like, yeah.

SPEAKER_01 22:44

I don't need him to look young.

SPEAKER_04 22:47

No, that charisma is timeless.

SPEAKER_01 22:50

Yeah, I don't need any of my movie stars to look young.

SPEAKER_04 22:53

No.

SPEAKER_01 22:55

Celia Imri. Can we talk about her? The British actress.

SPEAKER_04 23:01

Oh, yeah, okay.

SPEAKER_01 23:03

She's 10,000 years old and totally unashamed, and she's brilliant.

SPEAKER_04 23:08

Yeah. What Helen Mirren.

SPEAKER_01 23:11

Well, she's had a bit of workout, Helen.

SPEAKER_04 23:13

You again? She looks amazing though.

SPEAKER_01 23:16

You need to go and have a really good look. She's she might be.

SPEAKER_03 23:21

I've got cataracts.

SPEAKER_01 23:25

Well, then you need to go and be her nurse. We just watched a really, really cute movie called Love Sarah.

SPEAKER_03 23:39

Okay.

SPEAKER_01 23:40

It's got silly got silia in re in it.

SPEAKER_04 23:44

Uh-huh.

SPEAKER_01 23:45

What on what's what channel? Oh maybe Netflix. Maybe Prime.

SPEAKER_04 23:51

We need a good movie.

SPEAKER_01 23:53

Oh, it's lovely. It is so lovely.

SPEAKER_04 23:58

Really?

SPEAKER_01 23:59

Lots of little twists and turns and all right.

SPEAKER_04 24:02

That might be my afternoon.

SPEAKER_01 24:04

Love Sarah.

SPEAKER_04 24:05

Love Sarah.

unknown 24:06

Yeah.

SPEAKER_01 24:07

Okay. Yeah, yeah, yeah.

SPEAKER_04 24:10

Thank you.

SPEAKER_01 24:11

So I'm sorry you had a crappy day and a crappy weekend.

SPEAKER_04 24:15

It wasn't crappy. I just put too much in. And one of the things I've learned is that when my brain starts to go, there's a lot of talk going around you, and I'm feeling a bit overwhelmed. You might need to go just go for a walk for five minutes. Not that I walk, I roll. And I and I didn't. Yeah.

SPEAKER_01 24:43

Um, so I think this is actually a takeaway for all of us.

SPEAKER_04 24:47

It is. And thank you for the heads up about what an amazing full moon we have just gone through as well. Because I think what we're talking about right now is something to do with that as well.

SPEAKER_02 24:59

Okay, sure.

SPEAKER_04 25:01

Full moon in Scorpio, Beltane, and there are so many cool meditations out there to do around this full moon.

SPEAKER_01 25:09

Great.

SPEAKER_04 25:10

All all the hippie crazy woo-woo people have done a have done a meditation on it. So guide these people, it's so good. And they talk about this as the full moon in Scorpio while it's in the sun sign of Taurus. So all the things that you want to shed, get rid of, burn through, it's it's now. And it's like a coming home, but nothing will be the same. And I know a lot of people that felt this one quite heavily. I don't feel comfort comfortable getting rid of your crap. Like it's not something that you go, because if it did feel comfortable, we would have done it ages ago. You know what I mean? And I noticed your posts on social media where you were saying you weren't feeling great.

SPEAKER_01 26:03

Oh, I was feeling fine, I just wasn't feeling in sync.

SPEAKER_04 26:08

It's it's it would they're a little bit discordant, wasn't it?

SPEAKER_01 26:12

Yeah, as if I was walking in a parallel universe.

SPEAKER_04 26:16

Absolutely, and that's exactly how I was feeling, and I think maybe that's what's been at play as well. And you people out there that think that shit can bugger off, I don't care.

SPEAKER_01 26:31

You know, I'm not very woo-woo either, but I love the moon.

SPEAKER_04 26:37

The whole planet is influenced by the moon, you know. You look at tides, you look at coral, you look at flowers. There are flowers that only bloom during this period as well. Um, so to then think or to be so arrogant as to think that it doesn't affect us is naive but agreed.

SPEAKER_01 27:00

Yeah, very naive.

SPEAKER_04 27:03

So so yeah, I um I I'm okay, but I think today was an incident where I actually just went, nah, I'm not doing that.

SPEAKER_01 27:16

Lisa and it was good. You were tired.

SPEAKER_03 27:20

Yeah.

SPEAKER_01 27:21

Shit wasn't going your way. Everybody turns into a five-year-old at this point. Plus, you have the weight of this disease, yeah, yeah, and holding up a life that is getting more and more of a struggle just to live regularly.

SPEAKER_04 27:42

Yeah.

SPEAKER_01 27:43

Give yourself some grace, sister. You're a you are allowed to have, yeah.

SPEAKER_04 27:50

That's one of I guess that's the other thing. I've noticed things are a bit harder, you know. And while there's some really cool things, like the spasticity in my right leg has completely vacated.

SPEAKER_01 28:06

Amazing.

SPEAKER_04 28:07

Amazing. So instead of walking like a thunderbird, I actually have some degree of normality, it's just weak. I'm very weak. And yeah, my physio at Noran as well, like we do things about you know, getting up out of chairs and things like that. And he made the comment, he goes, You always have strength when you do this, and it's one thing I've really noticed with ALS, what you choose to use, and it can be hard because you've only got so much energy.

SPEAKER_02 28:40

Yep.

SPEAKER_04 28:40

So I always work on, yeah, I want to be able to get up out of a chair, and because I focus on that, I've got it. And this morning, like Mark and I were at Annette Kaluman and working on just there's a great step on the hydrotherapy pool there where you can have your arms about probably 20 centimetres under the water, and so I could put my arms on it and I could actually pull my legs back underneath me. Now that's something I haven't been able to do, so you know, there's some little things like that, and anyone I know who is moved out of ALS and time will only be the answer to whether or not I'm able to do that. Um, and of which there are a lot of people slowing it down, reversing it. I am taking a drug that they do expect will help a lot, and is dealing with what causes neuron death. So, yeah, I've got really good reasons to be optimistic, but um it's a slow process, nerves are slow, it's a really deep-seated part of your human body, and that it's not like pulling a muscle. This is you know, this is inside your brain and spinal cord. So, you know, it's like it's big.

SPEAKER_01 30:07

Yeah, it is big.

SPEAKER_04 30:09

It's really big.

SPEAKER_01 30:10

But you're a fighter.

SPEAKER_04 30:12

I am. I am a fighter, and I I I feel quietly confident that that's what I think was winding me up a little bit this morning when you know, days where I get tired and I bite the inside of my cheek and you know, those sorts of things. Um, but yeah, I haven't had any uh reason to, you know, swallowing is perfectly okay. I did have a few episodes three weeks ago that weren't great, and now I'm back to normal. So, you know, it but it's a roller coaster. It's a condition that is a roller coaster for sure. Yeah, really big. Um, so off the back of our mold discussion, oh yeah, go we had the building biologist come.

SPEAKER_01 31:08

How'd that go?

SPEAKER_04 31:10

She was really great, she was brilliant, um, incredibly thorough. It was not cheap, but given the work she did, she had a person with her. They did 16 samples from in and above our house. Then when I picked the ceiling, which I wouldn't bloody do. I'm pretty sure there's a target snake that goes up there from time to time. Um, yeah, she she thought a lot of the things we were doing were good. Blinds in this room, which you can't see because we've got them pulled up. I spent a lot of money putting them and they sit very flush, um, very custom made. They're hollow, and how they insulate is by trapping a tube of air.

SPEAKER_01 31:58

Oh, yeah, yeah, yeah. I've seen those. They're like um they're like core flute.

SPEAKER_04 32:02

Yeah, and it's core flute that fills with moist air and grows mold, as we have just found out.

SPEAKER_01 32:10

Right. So when you buy them, you need to get hot glue and put it down the edges, right?

SPEAKER_04 32:16

Yeah, you'd probably need to seal it for sure. So, yeah, four and a half grand's worth of blinds, I think it is.

SPEAKER_01 32:24

So I think that you need to seal them off now. The end.

SPEAKER_04 32:28

Yeah, I'll think we'll wait and see what the report says. There's no way to clean them, I don't think.

SPEAKER_01 32:34

Just seal them off, mate. Get a hot glue gun? Fill it up with glue. Well, no, you don't need to fill it up, you just need to fill the ends up. So that's no in and out.

SPEAKER_04 32:46

I will ask her about that. I'll mention it to Mark. Why did we not think of that?

SPEAKER_01 32:51

Because you're not a filthy cross dresser.

SPEAKER_04 32:55

Told together by a glue gun.

SPEAKER_01 33:00

Hot glue and heartache, Dale.

SPEAKER_04 33:03

I love it, I love it. So um, how has Leppington gone?

SPEAKER_01 33:09

Oh, we it was terrible last night. Like it the people that were there are amazing, but there there weren't even 25 people there.

SPEAKER_04 33:17

Bam.

SPEAKER_01 33:18

And well, interestingly, the venue said, Look, we've had two long weekends. Yeah, Mother's Day's coming up.

SPEAKER_03 33:29

People holding on to their dollars.

SPEAKER_01 33:32

Well, uh, they said the week had been really quiet as well.

SPEAKER_04 33:36

Okay. Look, we're finding with the workshops you run here, um, we get a lot of people register, and then when it comes to committing, they bail. Right. So they want the spot, they want to, and I think I think what happens is they want the spot, but they also want to see what their money's doing. So I think that window is shorter for people, and um like we still feel, but it's not like fill with a wait list of 20 people like we did a year ago.

SPEAKER_01 34:11

So you know what we're taught as celebrants to take a 50% non-refundable booking fee.

SPEAKER_04 34:22

So we we have an a booking fee to hold the spot, then we have an admin fee because people underestimate, like we've got to go into the workshop, we've got to contact other people, we've got to get you onto our you know, cancellation refund list if there's a refund due. We've got to then get our accounting out. It's a pain.

SPEAKER_01 34:49

You don't have to explain business.

SPEAKER_04 34:51

Yeah.

SPEAKER_01 34:52

We all know what a pain in the ass it is to take a booking, have to stop a booking, which is why um celebrance is all non-refundable.

SPEAKER_04 35:01

Oh wow. Yeah, so you better be sure you want to marry that person.

SPEAKER_01 35:07

Well, you better be sure that you want me to do the gig. Yeah, yeah. So it's 50% up front.

SPEAKER_04 35:14

So you're out in the world now?

SPEAKER_01 35:16

Not yet. Not yet.

SPEAKER_04 35:18

How soon?

SPEAKER_01 35:20

How long is a piece of string, Lisa? Uh from three to three to nine months it could take. And uh three three months went by last month.

SPEAKER_04 35:30

Okay.

SPEAKER_01 35:31

So maybe in the next six months.

SPEAKER_04 35:33

Nice. Yeah, I'm so proud of you because I seem to remember there was a time when you weren't sure you were gonna continue.

SPEAKER_01 35:40

Oh my god, there were many, many points where I was so overwhelmed by the whole daunting, and you know, I'm not like I am absolutely not a paperwork guy.

SPEAKER_02 35:53

Yeah.

SPEAKER_01 35:56

So yeah. I think we're about ready, my love.

SPEAKER_04 36:02

Ready for what to say?

SPEAKER_01 36:04

Ready to wind up.

SPEAKER_04 36:05

Oh, hey, I just wanted to throw in please when I was I went down to Wagart the weekend before last, yeah, and this woman I know, she is from the same town Mark is at, and she was judging and she came up and said hello, and she was like, Oh my god, it sucks. You know, I heard what's going on. Then she let slip that she listens to the podcast and said, Oh my god, Porsche Turbo, they just seem like someone I have to meet at some. You're so good. You make me laugh every week, and I'm so grateful.

SPEAKER_01 36:44

I think we're a good team, Lisa.

SPEAKER_04 36:46

I think we are. I think we are.

SPEAKER_01 36:48

We've been working together for decades now over different things.

SPEAKER_04 36:53

Yeah, it is. I just I would love my health to be in a spot where we could do some big fundraises again.

SPEAKER_01 37:00

Well, I'm sure that will happen.

SPEAKER_04 37:02

Yeah, I'm sure that will happen too. So, what's up for you this week?

SPEAKER_01 37:07

What well last week was very exciting. I did I went to the dentist and found out I had to have a have to have a tooth pulled, which is really nice. Well, you know what? I'm I've always had tooth problems, 25 years a drug addict. With uh doubled down with major depression issues meant that there were sometimes cold days when I didn't clean my teeth. So I I have amazing teeth, but shit house gums. Uh so I have two implants in my mouth already. I think I've lost eight or nine teeth all up.

SPEAKER_02 37:46

Oh man.

SPEAKER_01 37:47

So this is no surprise. And we've been fighting for 25 years to keep teeth in my mouth. Um, and just one of them has decided to go south. So uh I had a big cry. I went and did art because he's across the road from the art gallery. Um and now I'm ready to go and say, take it out. And then Jin has booked me in in Busan in South Korea to have the implant done while we're over there in November.

SPEAKER_03 38:17

Let me know how that goes.

SPEAKER_01 38:18

Yeah, yeah, yeah. So this apparently this dentist is the guy who created modern implant technology, and he's the one that goes around the world. And so I probably won't be seeing him, but I'll be seeing one of his students or whatever.

SPEAKER_03 38:31

South Korea is this cheeky little doer, isn't it?

SPEAKER_01 38:35

Indeed. Indeed. It's really interesting because it has no resources. 70% of its country is mountainous and cannot be lived in. And it's it's 10% bigger than Tasmania, and they have 53 million people living there.

SPEAKER_04 38:55

I have to admit, when I was in Seoul, it's got like 53 million people.

SPEAKER_01 38:59

Really? I don't feel that when I'm there.

SPEAKER_04 39:02

Oh, look, I have to say it was a short overnight visit.

SPEAKER_01 39:06

Yeah, yeah, yeah.

SPEAKER_04 39:08

But um, yeah, it felt intense, and but I have to say I loved In Sadong. And Mark and I had to-oh, it's so good. And Mark and I had this great night, jet lagged, in this local bar, and we wanted to go to a tea house. And this young kid, he was about 16, really wanted to practice his English, and so he just looked after us. We had a great time, amazing, yeah, yeah, really good. It was great. All right, so good for you.

SPEAKER_01 39:43

Yep. Uh other news saw Guy Sebastian.

SPEAKER_03 39:47

How was he?

SPEAKER_01 39:49

Right. So I always thought he was gay.

SPEAKER_03 39:54

I still think he is.

SPEAKER_01 39:56

No, no, he's not. I saw him dance.

SPEAKER_03 39:58

Okay.

SPEAKER_00 40:01

Oh dear.

SPEAKER_01 40:03

He's not gay. She can't he was so much better than even expected.

SPEAKER_04 40:13

I think he is staggeringly talented.

SPEAKER_01 40:16

Seriously is.

SPEAKER_04 40:17

Yeah.

SPEAKER_01 40:18

Just he was just so comfortable up there.

SPEAKER_03 40:22

Yeah, yeah.

SPEAKER_01 40:23

Like, really, he um he seems like a genuinely nice guy.

SPEAKER_02 40:30

Yes.

SPEAKER_01 40:30

Um, I don't know if you remember, it was either the voice or idol. He had one of the girls that was on it one season when he was a judge come and do backup vocals on one of his singles, and she got the boot from the show because of it. Because neither of neither of them realized that would happen. Anyway, she is still his female lead backup singer. Awesome, like amazing, and her voice just incredible. Oh my god.

SPEAKER_04 40:59

Hey, I saw him in the piano the other week.

SPEAKER_01 41:02

What's the piano?

SPEAKER_04 41:04

ABC are doing this thing where Amanda Keller, I think her name is, is they go around and people who play the piano put themselves forward and they do all the performances in local shopping centers. Wow. Yeah, yeah. But I interrupted you. What were you gonna say?

SPEAKER_01 41:28

Um, where were oh, so one of my favorite bits, and it was probably staged, but it didn't feel staged. Yeah, is he walks around the venue and people tell him a song to sing that is not one of his playlists. Oh so he's got this person with him with a phone who looks it up, looks up the lyrics. Oh my god, and he just sings. It was oh god, I wanted him to come to me. Yeah, I really, really, really wanted him to come to me. I was we were too far away.

SPEAKER_04 42:02

There's another one that is on the ABC that oh my god, she used to do the 730 report and she's now doing this one, and it's people who are very, very diverse um intellectually handicapped people who um they come on at I want to say it's the interview, but it's not, it's on, and if you go on to ABC IV, you'll be able to guy Sebastian was one of the interviewees on. Okay, yeah, and this girl got up and she said, I've just loved you, I've loved you from day one, in that way that people like that just let it all hang out, then she breaks into song and she can sing. Wow, good for her. I know I I've got goosebumps just remembering it, and they get some people on that are just phenomenal, and oh, what's his name? Richard Roxburgh. Oh, yeah, yeah, and he's moved to tears, like with some of the questions these people have for him. Wow, and the people in the following seasons who are in first season and second season, they become the sound crew camera crew for the next year. So Lee Sales does it, yeah. You've got to see it, you'll love it, you'll absolutely love it, and um yeah, it's just beautiful and very heartfelt.

SPEAKER_01 43:38

Will you put these into the thing under the thing?

SPEAKER_04 43:43

I will, I'll try and remember, but yes, I will.

SPEAKER_01 43:50

If I I might, please just say I might. I might, whatever.

SPEAKER_03 43:55

I might, come on, come on.

SPEAKER_01 43:58

It's such a good answer. Would you please I might?

SPEAKER_04 44:03

I didn't mean that like it sounded. Hey, exciting stuff. Anthea Da Silva has framed my art from Uluru.

SPEAKER_01 44:14

Great. Excellent. All right. Is she painting you for the Archer Ball next year?

SPEAKER_04 44:20

Well, she did herself for this year's art. Oh, great. And then decided not to enter. Oh. Look, I get it. I get it. Do you have I think she I think she just didn't feel like it was ready and she wanted to trust her gut with it. I think it was really great. I think self-portraits are staggeringly difficult to judge the quality of. I'm not sure. She asked me if I wanted one a few months ago. Wow. That'd be cool.

SPEAKER_01 45:03

Please get her to Archibald You.

SPEAKER_04 45:06

Really? Why not? I think your portrait for the Archies was robbed. I thought it was great.

SPEAKER_01 45:14

Uh I preferred the red one.

SPEAKER_04 45:17

Did you?

SPEAKER_01 45:17

Yep.

SPEAKER_04 45:18

Yeah.

SPEAKER_01 45:19

Seriously. Uh I I think the red one had more power, was more, was more was more interesting. I felt like it captured me far more than the one, the the original uh me looking in a mirror. Uh I loved the blue one.

SPEAKER_04 45:39

Yeah, yeah.

SPEAKER_01 45:40

But I knew it wouldn't get hung.

SPEAKER_04 45:42

Isn't that interesting?

SPEAKER_01 45:43

Yeah, I loved it though.

SPEAKER_04 45:45

Yeah. Bless her heart.

SPEAKER_01 45:47

She's oh, she's amazing. She's amazing. She should do you because you're a really, really interesting subject. You are fighting this war, not just with disease, but with the the medical industry. Uh you have been part, like there's so much to you, Lisa, that could be haloing you, like just a history halo.

SPEAKER_04 46:15

That's that's very sweet of you, and that is something that I sometimes find hard to see about myself. Um, and Mark says stuff to me like that quite a lot, and I think um, yeah, why not?

SPEAKER_01 46:39

Mark should put you forward for an OBE. OAE. OA. Sorry.

SPEAKER_04 46:46

Do they give them out for being a serial shit stirrer? I don't know.

SPEAKER_01 46:50

Are you joking? That is number two on the list of what you have to be.

SPEAKER_04 46:56

Oh, that's so good. Um, yeah, you never know. You never know.

SPEAKER_01 47:01

Is he there? Mark, you have a job. Not that you don't have enough.

SPEAKER_04 47:06

He's God, he works hard.

SPEAKER_01 47:08

I don't know.

SPEAKER_04 47:09

Um, I can hear that he's on a call with someone.

SPEAKER_01 47:12

Is he? Okay.

SPEAKER_04 47:12

Yeah, he is. Lisa ranning up there.

SPEAKER_01 47:16

It has been. Lisa, I love you to the moon and back. We're running away.

SPEAKER_04 47:22

Love you buckets.

SPEAKER_01 47:23

Love you buckets.

SPEAKER_04 47:30

And that was this week's episode of A List to the Moon and Back. Thanks for listening. And if you can share, like, review, we'll always be incredibly grateful. And we hope to see you next time around. Thanks again.