Originally published at: https://ketowomanpodcast.com/anne-robertson-transcript/
This transcript is brought to you thanks to the hard work of Trish Roberts.
Welcome Anne to the Keto Woman podcast. How are you doing today?
I'm fine, thank you. A bit cold but, you know, it's winter.
Yes, we were talking about that earlier. This I think might actually be a first with my podcast. I'm just thinking back. Now I have recorded in the time zone when I've recorded with people in Sweden. They’re in the same time zone as we are, but I haven't recorded with anyone who also lives in France yet. So that's a first I believe.
Yeah, I think you're probably right. Yeah.
And we were talking earlier, you're quite a long way up from me. You're north of Paris and I'm about five or six hours south of Paris, so quite a difference between us and obviously a difference in the weather today because it's quite mild here.
Yes, it's distinctly cold here, below zero - a hard frost this morning and we're expecting snow tomorrow.
Oh goodness. Well I know when I looked at the weather forecast it did say something about it. It called it something weird, actually, which I've never seen on the Météo - something like “a wintry mix”, which I imagine is sort of sleety type stuff because they didn't go outright and say snow and they didn't say rain. They said a wintry mix. I'm assuming that's what they mean. So I think your weather is coming down here in the next few days. That's what I'm getting from that.
Well, they're threatening us with one to five centimeters of snow overnight tonight.
Crikey, I don't know what it's been like with you, but when I first moved here and you've lived in France a lot longer than me, I think. Yeah, I think. How long did you say you'd been here? Over 30 years. Is that right?
Right, so you've been here 20 years longer than I have. I've lived here 15 but when I first moved, I can remember every winter we would reliably get quite a thick snowfall because I've got those pictures and I used to have a little Border terrier and he used to get lost in the snow. You couldn't, you couldn't see him. He was below it. So we had that reliable, probably a foot of snow and it came at different time every year. Sometimes it would be early in December and sometimes it would be as late as March. We would reliably get it at least once every year. But we haven't had that here for probably the last four or five years.
Wasn't always like that. Certainly not in the Paris region. I can remember in the '80s that we definitely have mild winters.
Oh really? So it's a bit cyclical. People talk about these things coming in cycles. So I guess we're in that cycle. We are they are a bit milder. The winters.
Then again we have the most vicious winter in, um, ’86 to ’87, which was when we bought this house, and everything froze up.
We bought at the end of December and we went to the wedding of some friends in January and when we came back it was minus 16.
And everything, there's snow everywhere and everything had frozen up. We couldn't do anything to the house for a couple of months because it was just frozen.
Yes. Well I think I've experienced just a couple of winters like that. It usually comes late in about February and I think it's gone. Yes. It's gone to and we are talking in Celsius here for, for Americans. I have no idea what the translation is temperature wise, but it's gone as low as minus 20 here and when it did, when it does that for if it does it just for one night, it's not too bad. But if it does it consistently, which it did here for two weeks I think. And I had the same issue. All my pipes froze. I had burst pipes. I mean I had heaters on everything everywhere trying to stop them from freezing and yes, it was an absolute nightmare. There's, there's nothing you can do when it gets that cold. I know that's where people like Canadians are used to this. They're prepared for this kind of weather, but we're not really because it is unusual isn't it for it to get that cold.
Oh it is. Yeah.
But a nice, a nice chilly winter is good. You know, a decent sort of minus 5 or something to kill off all the bugs. That's the only thing with mild winters we get left with things we don't really want.
I hate the snow because I don't feel safe walking in the snow.
No, I can understand that.
For a start, I have a guide dog and she's fine. She's got four feet and they're gripping--she's got hairs between the pads, she's fine, but I can slip and fall easily.
Mm. And they quite enjoy it too. Don't they? Dogs quite like the snow. Yeah.
They love it! They go crazy. But, no I hate the snow. I hide. I stay indoors when it's snowing.
I don't blame you at all. So you've given us a little intro there to some of the things you are going to talk about, but why don't you start back at the beginning and tell us your story because it's a fascinating one.
Um, yes, it's a long story. Let's get rid of the blind a bit. First I had an accident. I got my left eye was cut when I was a few months before I turned five. I'd been at school for two terms. The sight went in that eye, it was unrescuable. And I lost the sight in the other eye through a thing called Sympathetic ophthalmia, which is a known condition that is not understood. And the cause is, if you have a trauma to one eye, you can lose the sight in the other eye. For some people, it is more quickly, some people it's more slowly and it doesn't necessarily happen. In me it happened fairly quickly over about four years. I lost all the sight in my right eye. I didn't have any left eye damage. So I grew up as a blind person. I went to schools for the blind for 10 years. But when you do that, being blind isn't odd because everybody else is in the same school. So you know, there is nothing, nothing. It just is normality. When things happen to you as a child, it's just normality.
How much do you remember from before the accident? Because that's a very young age for that to happen.
Really? Cause I have to say, I don't feel like I remember much from that age or before at all. So it was just going through my head. I wonder how much you remember from those years when you did have your sight.
It's strange because I mean I remember colours, I'm a very visual person. That's the weird thing. I mean the things I like, I remember I'd learned to read already cause I remember my GP handing me a package of cigarettes to see if I could read what was written on the side and the fact that said cigarettes in block capitals and it was green. Now. I remember that. I remember seeing that so I could still see it. You know, I had a reasonable amount of sight left at this point. So I could read by the time my sight went. When I was six, they sent me, I was sent for a year to a partially sighted school. But it was really just a kind of a sop to my parents, before I had to go away to boarding school. At seven, I went to school for the blind. It wasn't too far. It's about 30 miles away.
Whereabouts was that in the UK?
Ah, I detected an accent now. I was wondering.
Yeah. I'm from, I'm from West Yorkshire. The school was in Sheffield. It was for anyone, any Brits, I was actually at school at the same time as David Blunkett [Wikipedia]. He was about five years older than me. Yeah, but he was at the same school. He was a kind of senior to me at school at Sheffield.
And do you find, you say you're a very visual person. Do you find that you keep those images from when you did have your sight that you see in your mind? I wonder how that is different from from somebody who was born blind, what they see as it were in their mind.
Someone born blind can't imagine, can't imagine what's it's like to see. They have no idea. So they have nothing - visual images mean nothing to them because they can't, they can't know what sight is if they've never, you know, having never seen.
Yes. I wonder how… I tried to sort of get my head around that, because I wondered , does some kind of image still form in your brain? Even if you've never seen anything - or does that shut off and you see things, as it were, just using all the other senses?
We just record everything from all the other senses. Yeah.
But you have that mix. You still have that visual element that you carry on using.
The stupid thing is that I invent images. All my memories are stored as pictures. So whatever the memories, whether it's scenes from books or anything, all the images I've constructed in my own head. So it's as if it's a load of snapshots, remembering holidays or anything. It's not the sound, it's the images, but they're not real images--they're my version, they're something I constructed in my head.
I say I am a visual person because, you know, I make clothes, I sew, I knit, I crochet, I design things. And because I'm a visual person and that's kind of where one of my talents is, in making things. But it's all imagined in my head it sounds so weird, but I'm always, I'm always constructing images in my head.
It's fascinating. And I imagine also when you're making things, all those other things are important as well. Like the texture. I mean I know especially, I mean knitting and crochet you, you can make incredible textures that are visually interesting but stimulating from a, from a touch point of view as well.
Yeah, textures are important as I well. When I buy material for sewing. Archie always describes everything to me. So that I know what I'm dealing with, you know, if it is patterned material, I need to know how it looks, so as I know what I can do with it.
Yes, of course. And then you have that snapshot in your mind that you then construct the item of clothing that you're wanting to make.
No, I think it's, it's absolutely fascinating and everyone's different and when you're talking about losing one of the senses, I just think it's fascinating how that works. And like I say, the difference between being born that way and something happening and when that happens, at what age and how that influences you going forward. So it's very, very interesting. But yes, like you say, it does seem odd that you describe yourself as a very visual person when you can't see, but it does just show how those visual images, imagination is every bit as important in constructing visual images as what you actually see through your eyes. It sounds like you have these fantastic vivid pictures. It would be wonderful if we could take a snapshot of what's in your mind and for us to be able to see it. I should imagine it would be fantastic.
Yeah, it's funny. It's just one of those things. I mean, some people who lose their sight even later than I did, forget everything. They can remember what it was like to see, but they forget, they stop being visual.
Yes. exactly. And that's what, that's more what I assumed you would say. Especially when it happened at such a young age.
Exactly. But no, no, there is a strong streak of visual art in the family.
Yes. And you're going to hold on to that, regardless. So what happened next? Your education was completed through the special needs boarding schools.
Well, up to doing my O levels, I was at schools for the blind. First of all, the junior school which was mixed and then blind girls' grammar school as was, which is gone--long, long gone. And after O levels, I should have stayed. Well, no, they would have liked me to have stayed there. But I'd had enough. I was depressed and I wasn't happy. So I went to my local grammar school to do A levels, where I was much happier.
So you were happier at grammar school and then you moved on to university?
Actually, I worked in between times in London. I moved down cause I didn't know what I wanted to do really. So I went to London, I worked for the RNIB, which is the Royal National Institute for the Blind. And I worked in their student's library, which is where they produce books in Braille for students for specific things. And where I was a proofreader and I worked on languages and then, like everybody did, at other things like psychology and anything that was just in straight English that anyone worked on. But we all have specialties and I did languages because I'd got O levels in levels in French, German, Latin and Spanish. And A level in French, German and Latin.
You are definitely a language girl.
Yeah, absolutely. So I was a proofreader and then I decided working in office wasn't for me. So I went to university to study French. Actually what I would have liked to have been was a translator and interpreter. But the careers people said to me that this wasn't possible because being blind, I couldn't read the background materials.
It would seem logically quite a good career, seeing as it's all vocal.
I know lots of blind interpreters and translators now and some who've done it for a long time.
Yes, logically it seems perfect because you're going to be very focused in on what you need to be doing.
I would have loved to have done it, but you know, it's not something you take it later in life because I can tell you, I work as a translator, you know, I do freelance translating. That's no problem. I was always good at translating. I was actually rubbish at writing essays. But I was great at translating and talking. I speak French just fine.
Which is handy because now you live in France. But it sounds like potentially the most important thing to come out of university wasn't anything to do with your studies?
No, it was Archie. I met Archie. Well he says, we met in our first year when I beat him around the ankles with my white stick--which is very possible. We started talking to one another at the end of the second year in exam time because we both tended to hang around the welfare office, helping people out with things. I wanted to go and get some lunch, but I needed help with the self service. And he had just come from an exam as I had. And he was saying was there still food left in the cafeteria. And so I said, if you're going for food, I'm coming with you. I hijacked him. We never stopped talking after that. That was the start of it. And so we had lunch and we talked and talked and started seeing each other. And, six months later we got married. It was that quick.
Interesting. Sometimes when you know, you know, don't you?
Yeah, yeah. We found we had a lot in common music books, cryptic crosswords, all sorts of things.
And we were discussing this earlier, but you're going to go on now to share some pretty traumatic things that have happened to you health wise and I should imagine what really helped get you through all that and to continue being the optimistic person that you are, I imagine he had a great deal to do with that.
Definitely. Definitely. Yeah. It's, it's silly my health problems, because I realize they started when I was only two and I had acute nephritis. They discovered this because I got very bloated. And I was in hospital, I don't know how long I was in hospital, but they starved me. No food, nothing. There was even no water for a week. And then I had sips of water and then gradually things started working again apparently. And they sent me home. They sent me home with the measles--I caught the measles in hospital.
Isn't that so often the case? You go in with one thing and you end up with something else entirely.
It was a mild case of the measles. So I was okay, and I recovered. So that was that really, and I didn't think anything else about it. I always the cold and other people didn't. I just thought it was me, I was peculiar that way. And I thought I was lazy because I was often tired. I dunno. It didn't strike me, I didn't think it could be kidney problems. I did have one intimation of problems, but I never thought it was serious. I know I was about 21, I was on the shorthand typing course and I had a kidney infection, which was really, really painful. I didn't think anything else, it cleared up. I was given something for it. And it cleared up, and I thought that was that. But I think actually, my right kidney stopped working at that point.
Right. So it's like you were saying with hindsight, the benefit of hindsight, which is always a wonderful thing, there were problems with your kidneys probably from a very early age, but you obviously had this vulnerability that kept cropping up.
Exactly. But I carried on, I worked, we were married, I finished university. Archie did physics and he went into computing, and I had done French. And I went into computing because that was suggested as one of the jobs a blind person could do on reasonably equal footing with sighted people.
So I went into computing and worked at it for years on and off with one thing and another. We moved countries and everything. It was 1983 when we moved to France because we'd had enough. We just having enough of Britain and we kept going to France on holiday. So we moved, and signed up with an employment agency specializing in computing jobs, and Archie got a job quickly. I had to get a piece of equipment that allowed me to work, which is a device for reading print called an OptiCon, which allowed me to read any printout from the computer or with a special lens module to read the stream from the computer. So they used mainframe computers of course. So we have basically terminals that were connecting to a main computer. That's how it was everywhere in the '80s. You hardly had any desktop computers. I mean, they were sort of toys really. They weren't serious for business. So working companies worked with the mainframe computers, which were accessed via terminals.
Yes. It seems incredible now thinking back to how computers were, with the kind of, the level of technology we have now, it seems crazy.
It scary--the power in a laptop computer, even a telephone, even an iPhone. Compared with the mainframes that they had back then, it's unbelievable. So I was able to work the same as anyone else. It was great, it was a full job for me. But, we'd been here over three years when we decided we didn't really like living in Paris. He wanted to live somewhere a bit quieter. We used to go horse riding in Paris, first of all in the Bois de Vincennes, but then someone who went riding there with us said she knew a really good place out here for riding in the forest. And of course horse riding in the forest is lots of fun. So we started coming out here, decided we liked the area, looked for a house to buy, found one - it was a bit of a ruin, a lot of a ruin, actually. We knew it needed lots of work, but we're earning plenty of good money, so...
Ah Brits love buying ruins in France. So I think most of us end up doing that, don't we? Yeah. Buying these old ruins that farmers don't want or whatever and turning them back into something.
Yeah. Well this was a house and people had been living in it, but it needed work. I mean it didn't have a proper bathroom, for a start.
Oh, tell me about it. Mine was exactly the same. It's an old, old farmhouse. It's an 18th century farmhouse and it had had people living in it, you know, families used to live in it full time. And then I think they were just here in the summers. But even so, I can remember my mother saying when I showed her all the pictures, she said, okay, so they're interested enough in modern equipment that there's an aerial on the house for their TV. They have TV and they have a phone but they don't have a bathroom. What's going on there? And although there was water coming into the house at that point--I think they used it from a source--when I moved in that wasn't working and you know, I had to put water in. So there was the ability to watch TV but, but not to go to the loo. Crazy.
At least we had a flushable loo and a functional sink.
You had luxury then!
Yes, yes, yes. But it needed major work. And these days we have four loos--we have two full bathrooms and two partial bathrooms as it were. So we bought this house and started renovating it and decided--I was in my mid thirties by this time--that if we were going to have any children, it was time to start. So it was probably about 36. We started trying and I had no trouble getting pregnant. I just couldn't stay pregnant. I had three miscarriages and got a bit further each time, but I thought my body is telling me something, saying, you're not really cut out for this. And then my blood pressure starts to go sky high.
That's a devastating thing to go through.
It was pretty awful. But to be quite honest, I was just--I was still alive. So I think if you've had a major trauma early enough in life, some things, you just take things as they come.
Well. So yes, I think certain people like you do. Yes.
I tend to be a philosophical, I tend not to be someone who says, 'Oh, why? Why me?'
I can see that.
So why not me? It's just the way the cookie crumbles. You know, you win some you lose some. Well, my blood pressure went out of control, the medication to bring it down was a disaster for me. I was kind of hallucinating on it. So then that scared me off medication and the blood pressure got worse. And it just carried on and carried on as if nothing was happening until suddenly I started having problems breathing. I'd fall asleep and stop breathing.
That's not a good thing.
That was scary. And then the doctor couldn't figure it out what was wrong with me. I was sent for all kinds of tests that never made any sense. And eventually my legs and ankles swelled up. And so then it was obviously kidney problems. And as soon as they found that, you know, it was dialysis and all the rest of it. Unfortunately when they did the biopsy, a biopsy on my left kidney and I hemorrhaged but internally so they couldn't see anything outside. And I was in agony. I was screaming to let me die. You know, it was that bad. And I had to have blood transfusions. The kidneys shut down completely, which is why I think the right one had shut down already long before because it was the left kidney that was biopsied and it was the left kidney that shut down completely. And then I had no kidney function at all, which lasted for quite a few months of no kidney function at all.
And pain from the blood clot from having bled internally. That was horrible. And dialysis was horrible because hemodialysis made me feel very sick and very washed out. So I had that was on hemo for some months until I got very cross about hemodialysis because we just, it was just doing nothing. And there was another alternative, which is called peritoneal dialysis. This is where you put fluid into the peritoneal cavity and you exchange it four times a day. But it acts, it does the filtering, the way the kidneys do. And you can eat, you've got a much easier regime. It's much, much less stressful and it's much kinder to the body.
Sure. An easier thing to deal with on a day to day basis.
It was complicated, but I was good at it. So I managed to, you know, I could cope. Yes, it was a big constraint. It was better than hemodialysis. So, anyone who knows about CAPD [continuous ambulatory peritoneal dialysis], will know what I mean, you have to be very careful and very clean about the way you do the periodex changes. But it worked for me and I was much better that way. In fact, after 15 months of dialysis, my kidneys recovered enough not to need it anymore. They weren't good. But they weren't at that disaster level, so I was able to carry on because at this point I knew perfectly well that I had pretty bad kidney failure and it was only a matter of time before they would pack in and I'd need a transplant. But you know, I kept going for about six years like that.
But while having all these problems with my kidneys, it was discovered that I also had a congenital problem, polycystic liver disease. Now normally they expect polycystic liver disease to go along with polycystic kidney disease, but not in my case. In fact, my native kidneys have always been quite small, quite underdeveloped, which may have added to my problems. So polycystic liver disease, lots of hundreds of cysts in my liver and they were growing. So I think the biggest was the size of a grapefruit eventually. But I have lots and lots of these. Archie described it as, if you think about taking a pair of tights and filling them full of balls of various sizes, that's what my liver looked like. So full of cysts and all from tiny little pea sized ones to grapefruit size, just huge. And it was compressing my stomach, making it hard for me to eat.
There's a lot of discomfort, isn't there?
Oh, it was awful.
When my stepfather had cancer, he had a very, very enlarged liver and you could see it. It's very difficult finding positions to be in because yes, that just the size of it and the way it compresses and the way it impacts everything. It's very uncomfortable way to be, very difficult to find any kind of position that's anywhere near comfortable.
It was awful. It was, it was awful. But you know, you just live with it. Carry on. But in 1997, they took out the left lobe of my liver just to relieve the pressure. And opened up some of the cysts on the, in the right lobe. Unfortunately, a couple of the cysts closed around a portion of intestine and I suddenly couldn't, nothing was going through. I was in hospital, so the surgeon had to go in again and free up the portion of intestine that was caught in these cysts were closing round. Oh, it was miserable. I thought I was going to die in a hospital. As soon as they'd fixed it. Two days later I checked out to the hospital against medical advice because I couldn't eat the food that we're giving me. Like they gave me sliced courgettes [eggplant], just boiled in water, no salt.
I ate them and they bounced back up again. I mean, it was just so disgusting. I said, I'm not staying here. You're going to kill me by not feeding me properly. So I went home and my parents in law were staying with us at the time, because they had arranged to come over and and I ended up in hospital. That's what I was doing. The actual hospital time, you know, it was a mess. So two days later and I was fine. I'd been eating real food and that was fine. But, oh, it was scary. So I just carried on. Then after that, the liver cysts continued growing until April of 2000 when I went to see the surgeon because everything was getting out of hand again. He said, well, there's only one thing we can do now, and this is a transplant, so you have to have a liver because of the cysts. And it was getting very fibrous. It was like, you know, cirrhosis of the liver. It was just physical damage. It was compressing the bile ducts. So I was having liver failure.
This was a double transplant, was it? A liver and a kidney?
Yes, a double transplant. Because my kidneys were so bad. I had to have a kidney as well because I had very poor kidney function, because my kidneys--well, I think there was only one working anyway--wouldn't have stood up to a long anesthetic.
I can remember Richard [Morris] talking about the difference with the operations--a liver transplant is much, much more complicated, isn't it? A much more lengthy operation.
It's the most complicated, it took 13 hours.
Gosh, so a long, long time to be under a general anesthetic, isn't it?
And three hours for the kidney--that made 16 hours.
Gosh. That's a long time.
Yeah. And it was, it was a year from the day the surgeon said you need a double transplant to me getting the transplant. I had to get a battery of tests in between times before I could get on the transplant waiting list, because they're not going to give precious organs to someone who's going to die of something else very quickly. That would be wasteful. So everything else about me was tested--heart, lungs, everything. I had scans and tests. Oh, it was one hospital, another hospital, testing this, that, and the other. I was fine. I was in good health because I used to go swimming. I used to walk, I've always had a guide dog, so I would always walk a lot. So it was actually healthy apart from having kidney failure, liver failure.
The rest of me was healthy. ... Well, the rest was fine. So I eventually got a transplant, for which I was very grateful and I can remember thinking after I was called one evening it was a Wednesday evening--and Archie took me and a friend Sally came with us. She said, Archie shouldn't be on his own with me in this situation, which was very good. And I can remember they were about to wheel me down to the operating theater. I was thinking, well either I'll wake up or I won't. If I wake up, everything's fine. And if I don't I won't know anything else about it.
So that's the way it was. And the next thing I knew it was Friday, late morning, I think when I came to, with tubes and wires and breathing apparatus, and all the rest of it. It was a -- ooh, I don't want to ever, ever have to go through anything like that again.
No. And the recovery from transplants is quite complicated, isn't it? Can get very tricky with the anti-rejection meds.
You have to take these immunosuppressants. It was peculiar because I was put on one--cortical steroids as well. But I was put on a thing called Prograf, which is TacrolimusAnd it was so odd, because I felt as though everything around me was vibrating--it was a peculiar sensation. But no one told me it was the drug. They didn't seem to realize that what I was experiencing was the effect of this drug. I mean, I was in hospital for weeks and then I was allowed to go home. I had to come back in a few days, the tests and they found that I was starting to have a rejection. So for the liver they upped the dose and one thing and another. And we had been reading up all around this subject. Archie is a physics graduate, so science papers, and we found there was -- often what you need when you have something like this was to add another immunosuppressant one called MMF -- Mycophenolate Mofetil.
That would be the next step. So when the hepatologist came to see me, we had all these papers spread out all over the hospital bed from a conference of transplant surgeons and doctors that must have just taken place, where they were discussing this sort of thing. And he looked at it and said, how come you've got all those papers? I've only just been to that conference and I haven't got them yet. That was really funny. Anyway, we said something's gotta be done. What about MMF? And he said, I was going to suggest that next. So he prescribed it.
And then actually everything went right. As soon as I start taking that one, everything went right. It's funny, but I mean that doesn't mean I didn't have side effects, I did. There was this feeling that all everything around me was vibrating. That was from the Tacrolimus and the MMF caused joint pains, but they wore off after about six months or so. But at first I was a bit creaky. So it took quite a long time to get over the transplant and the aftereffects. I reckon it took me a couple of years to get to normal, just take the normality. But the one thing I did appreciate almost immediately was not feeling the cold.
And that I realize it'd been all my life, I'd had poor kidney function because that makes you feel very cold.
Right. It's like we were saying earlier that benefit of hindsight and something you mentioned earlier when you were talking about the diagnosis with the liver that your kidneys hadn't developed properly. That reminds me of what you were saying about the, the problems you had when you were just 2, and that kind of logically makes sense, doesn't it? If there was a problem right from that age, they didn't develop as well as they should have done.
Exactly. After that, things were much, much better except that the kidney transplanters, they'd forgotten they'd left a catheter in place. It seemed to come out after six weeks. Of course I knew nothing about this. They showed up on scans, but no one noticed. No remarked upon it. And I didn't know what was normal and what wasn't. So it got much, much worse. Oh, six and a half years after the transplant and I was having problems, discomfort and things. And they suddenly realized that the problem was this catheter that had been left in place.
Wow, that is not something you want in there.
And by this time it's a calcified. So it was going between the transplanted kidney and my bladder. And I had calcifications, you know, like gallstones but they're kidney stones, kidney stones were everywhere. Oh, it was a mess. I had to have two operations to remove them and I bled and bled and bled. It was awful. And I had to have blood transfusions. And of course they figured that I would lose the kidney. The transplanted kidney.
Yes. Because presumably a transplanted organ is always more vulnerable.
Exactly. But the blood results weren't as good as they had been, things were deteriorating. My creatinine levels were too high. That shows bad kidney function. And we read a book. I mean, I didn't think anything about the kidney function and everything like that. It was by Barry Groves, it was called "Trick And Treat - how 'healthy eating' is making us sick" [Amazon], I think that's the subtitle of it. And it seemed to make so much sense. It appealed to me, because he basically said get rid of the carbs, get rid of all things like that. Eat good animal fats, high fatty meats and eggs and fish and green vegetables and throw out the grains. That really appealed to me because that's just perfect way of eating cause I don't like sweet things. I don't like sugar. I don't like jam. I loathe pastry. I also loathe pizza. There you go. I've never understood the thing about pizza. To me it's horrible. Well the toppings, the top, that's fine. So all the things I didn't like were the things I shouldn't be eating, apparently.
It was the beginning of 2009 we started eating this way and it took most of the year. But then all my blood markers then were perfect. And the funny thing is, a couple of years ago, my hepatologist was away and a young hepatologist saw me in my regular consultation--I have to see a hepatologist every six months. So I saw this one for a change and he was looking at my blood test results as was normal, it had just been done that morning. And he kept saying normal, normal, normal, normal. I think at that point I was 15 years post transplant. He's never seen this, you know, 15 years post transplant, everything's perfect. And the transplant coordinator, who was lovely, she said "Look back, look back. It wasn't always like that." So he looked back in my file and found where things had been going wrong, and you know she says, "It was diet, diet, she fixed it with diet!"
So yes. So that, that change in the way of eating really did make a difference. When things were definitely going downhill, they started going uphill again.
It saved my life, saved my life. Made me feel so much better and I lost some weight I'd been putting on, because when you're on immunosuppressants, you put weight on, everybody does, almost everybody anyway. I mean you're at much higher risk of Type 2 diabetes and everything like that.
Sure. It's the absolute perfect way of eating, not only to help with the problems you were having, but to stave off all the other potential problems that can come along as side effects.
Exactly, and I'd been able to reduce my immunosuppressants. You know, I still take the same ones, but I take a lower dose of them.
Right, which of course is going to be beneficial to you because presumably the side effects reduce as well.
Absolutely. The only thing that hasn’t got sorted is my blood pressure, which is an absolute horror. it goes up. I'm on three blood pressure medications because nothing seems to control it.
That's interesting that it hasn't helped with that because that is something that is one of the fast impacting things that keto does.
I know it's fairly reactive, my blood pressure, because the slightest thing was upsets me, whoa, up in the air. I mean, I had a funny experience about a year ago. Okay. Let me backtrack -- in 2016 I had a bad year, a very bad year, very stressful. My favorite cat died in April, and there was the Brexit vote in June. My guide dog Sherpa, who was born on the day of my transplant died in July. She was 15 but it's all the same.
We were talking about this before we started recording and how how freaky it was when you were introduced to her, you discovered that she'd been born on the very day you had your transplant.
You would definitely fated it to be together and we were talking about how I know how important my dogs are to me and how much they mean to me and how much they positively impact my mood and when I have problems with depression, they're what really helped get me through that. But having a guide dog, relying so much on the dog, it must take that relationship to a whole different level.
Oh yeah. Guide dogs are like people. You talk to them, you communicate all the time. The communication is not just words. You learn little signs. You're walking along. You know what your dog is telling you. Be careful here, walk behind me here because it's narrow and it's just little movements. I dunno. It's communication. You have this really strong bond and even though she was retired, she'd been retired for years and I'd got my current guide dog, Galda, still, she would lie on my feet and she would follow me everywhere still. And it was from one day to the next. I mean I knew she was, she was old and doddery, you know, but it was very sudden she would, she was able to get up and down steps even the night before, but the next day she couldn't stand. And it was a big tumor on her spleen, that must've moved, and pressed upon her spine. And then she had to be put to sleep. Oh!
Devastating. In what you were saying earlier about how your blood pressure is reactive to things that happen to you. Well it must've been going insane.
Yeah, I think so. I didn't bother testing. I didn't want to know. Also that same year I'd been having trouble with a tooth--an infection under a tooth and the gum, and it wouldn't go away. I'd had root canal work done on the tooth trying to get rid of this problem, and antibiotics, two lots. Nothing would shift it. So I asked my dentist to pull the damn thing out, which she did easily. It wasn't hanging on very tightly that tooth and it bled. And bled and bled and the infection went away, but it must've got into my bloodstream somehow because in November I had a TIA, which is a minor stroke, Transient Ischemic Attack (TIA). Uh, I was just getting ready to go out because our satellite receiver had died on us and we decided that we needed to replace it. And I was putting my coat on and suddenly all my left side went numb from my head to my toes, just the left side, nothing on the right.
And I couldn't feel my foot and I suddenly couldn't walk because I didn't know where my foot was on my leg and I couldn't look, see, so we call it the emergency, the ambulance. They came and assessed me and hauled me off to Beauvais Hospital. It was an hour away. That was quite funny in a way, because on the way the paramedic who was with me happened to be a science teacher. And so we had this long conversation about the inequities of chemical farming and the awful things it does to the water supply. I was having this long scientific conversation in French of course. So there's nothing wrong with my mind, you know, my mind just absolutely clear and I was talking perfectly well. It's just, I couldn't feel my left side so I was taken to hospital.
So it hadn't affected that, because it does quite often affect speech, doesn't it?
Yes, it does. But it didn't, my speech was fine. All my muscles were functioning correctly. It's just I couldn't feel them, I couldn't feel anything.
Yes. So you could actually move. It was just very difficult because you weren't getting the right signals.
The left side--I couldn't coordinate my left side.
So they took me to Beauvais, which happened to be the hospital that was working that weekend for emergencies. Of course, first thing they do is test your blood. It's just everyone to see if they've got some high blood sugar. Mine was low. Mine was 71, they say 0.71 here, the way they measure it. And they said, Oh are you okay? You know? Yeah, I'm fine. You need to test my ketones--2.8. So they didn't worry. They didn't seem to be too worried about that. So when did you last eat? I said, breakfast. I had an omelet at breakfast time. By this time it was about six or seven o'clock in the evening. I said, it's alright, I'm not hungry. It was very funny in many ways. They did an MRI scan, but they couldn't find any sign of what had happened to me. I saw a very sensible urologist who said sometimes you have to wait a couple of weeks before it shows up. A tiny, tiny bleed like that will only show up after a while, it kind of leaves a scar. And that's what in fact happened. They did find it where it was expected to be found. It was definitely a TIA because I was in hospital for six days until I could walk safely, indoors at least. And they sent me home with a prescription for 20 sessions with a physiotherapist. Luckily there was a physiotherapist within a few minutes' walk from our house.
Oh very handy.
So I was able to after when my friend Francianne, she’s lovely. She used to have a pet dog and we used to walk our dogs together. Now she just, her dog died almost a year ago and she accompanies me to walk out in the forest. She helped me going to the physio for the first couple of times until I felt safe enough on my feet to get that with Garda, and after that we were fine. We could do it on our own.
Right. So that helped restore at least some of the function.
Yes, it was exercises basically for coordination. Now I've gained most of the feeling back, except partial lack of feeling in my left foot and in my left hand. Almost everywhere else is fine. But the physio, I felt I had to, I had to get going. I have a young dog. She was still young enough to want to get out quite a bit, I couldn't just not go out. Just give up. It wasn't done. It wasn't acceptable.
Presumably. That's a very helpful part. That motivation is a helpful part of your recovery, I imagine.
Definitely. I mean it was a good reason. hat dog is precious to me and she's such a good guide dog. She loves her work. She had to have work to do.
And what kind of dog is she? I mean we often think, I always remember growing up in the UK it was, typically all the guide dogs you saw were yellow Labradors. I don't know what the standard is in France. Is there a typical dog they use as guide dogs?
There's a lots of Labradors. She's a Labrador-Golden Retriever cross and she's black. Now, three out of four of my guide dogs have been black. I've had two pure Labradors, black, and then Garda's a Labrador-Golden Retriever cross. Shep was a Labrador-Golden Retriever cross, but she was a yellow one. And looked much more like a retriever. She was the same cross as Garda. Garda looks like a Labrador. Oh guide dogs can be all kinds. In the same class with me when I got Garda, there was, I don't know what to call them in English--a Barbet, which is the ancestor of the poodle.
Okay, I don't know those.
The same kind of poodle-y coat. There was a golden retriever and there was a Hovawart, which is a German farm dog.
Yeah, sure. Can't picture that at all.
They're black and tan. They've got similar markings to a Golden setter.
If you know what a Golden setter, it's a big black and tan dog. But the Hovawart is not quite as big. We used to have a Golden setter. Oh he was adorable. So yes, Garda looks like a Labrador but she's Labrador-Golden Retriever cross and she's gorgeous and she loves her work.
Yes. And so it must have done you good, you know, having to get out and about with her.
We were talking a little bit about how frustrated you get. I was asking you how you navigate your way around a computer and you were talking about the different sort of hot keys you use on the board and you were saying that you make more mistakes now just because of that slight lower functionality in your left hand.
Absolutely. It drives me insane, because I used to be a very accurate typist, and now I have to slow down and I still make mistakes. I still--my left hand does stupid things, you know, it'll hit two keys at once and I'm trying to get it right. I'm trying to make that hand work. I play the guitar and make it work. Good exercise for it.
Yes. Presumably that that's the best thing you can do is just to keep doing different things that not only use those muscles physically, but also the link with your brain instructing it. So I can see that with and doing different kinds of things. So moving away from the computer keyboard and doing something very different, like playing the guitar.
I play the guitar, I knit, I sew, I crochet. So it all uses hands.
Hmm. And you have to be thinking about what you're doing at the same time.
Yes, the guitar playing is quite--you have to do fairly complex things with your left hand. Well it depends what you play. I like to make it do things, I play acoustic guitar, so you have to play reasonably interesting stuff on the acoustic guitar.
Yes. And I'm talking about that and navigating around the computer--that's what you've done. That's what you help other people learn.
Yeah. I teach other people, I teach other blind people to use their Mac computers and to use the iPhones or iPads. Some have come from using Windows and they start using a Mac and they need to learn a few things. That's usually pretty quick. Some people have never used a computer before and I teach them. It's interesting. I like helping people to be able to use their computers. And older people who've lost their sight later on. Teaching them how to use VoiceOver free screen reader, so they can keep in touch with their families. It's satisfying.
Yes. And it, it must just open up the world again.
Absolutely. I don't know what I’d do without my computer, I'm always on the Internet looking things up. I'm fundamentally curious. So I'm always googling things, you know, I can't help it. I always want to know everything.
Oh, me too. That's the great thing, isn't it? Just ask Google anything you think of anything you want to know the answer to, yeah, I'll just go and ask Google. It is fascinating.
Of course I read blogs and stuff on the computer. Got radio stations programmed in, lots of music on here. And my computer speaks any languages I want it to speak. Macs have built-in voices for lots of different languages, 20 odd languages, anyway.
Yes. You were explaining to me earlier before we started recording that and that's presumably, is it why you favor Macs is that they have these built in functions that are very useful?
Um, yes, but also because we were given a Mac in 1996 and got used to them. It was free. The Mairie were giving it away. It was old at the time. It was, but we were doing some translating. It was really handy to have it. So we were very grateful. We were roughed it, because Archie was teaching English in the village to children and adults, as you know, in evening classes. So they thought of him and said, do you need this? Could you use this computer? So yes, please. Thank you. So that's how we started using the Mac.
That was nice. Yes, exactly the same for me. My first Mac was a hand me down. That's how I got into it.
So first I had to pay for a screen reader for it. But it was in 2005 when the operating system, it was Tiger, came out. And the VoiceOver was built in then, the screen reader was built in. I'd had the beta version of it the summer before, so I'd done a bit of testing, hadn't done very much. I actually got into their beta testing program after that and did quite a lot for several years of beta testing of the new OS before it came out. Oh, along with lots of other people. You know, we were quite a big team doing VoiceOver, so I learned a lot about it.
Yes. Interesting. And helped shape the future development.
Yeah. And then when we started a website, and a discussion list for French speaking, Mac users, blind Mac users, because there were no resources for blind French people to teach them how to use their Macs. So we started a website and a discussion list and it's still going strong. It's celebrated its 10th anniversary last May and we have about 300 subscribers to the discussion list. They just share their experiences now, we don't have to do much at all these days because there's lots of them now and they all help one another.
But we started it and we said, isn't it hilarious? We have to be two Brits.
It is quite often the case it, it has to be said. But that is the lovely side of the Internet. This ability to find likeminded people. I mean in this case it is actually fellow French people who are just located here. But the beauty of it is, and how I found it so helpful, is just tapping into the, you know, first the weight loss surgery community and then the low carb and Keto community. And speaking to people all over the world and how you can tap into this fantastic local support group that is completely international.
Exactly. I was on all these language lists for blind Mac users. From the moment that Tiger came out, one started then, called Mac Visionaries and I'm still with that one. And others have come and gone and there's one for the iPhone. There's lots of these discussion lists now all over the world, in all different languages. It's so funny. We started the French one.
Yes. You should be very proud of that.
I'm fairly well known in France among blind Mac users, but a lot of blind people know of me because of that. They don't know much about me, but they know of me.
And they help you give them in the work you've done.
Yeah. They know who to come to. I mean our phone number's on the website. So I get phone calls all the time from people asking for help, advice on Macs and iPhones and things. It's good. But I do have trouble sometimes when I'm reading some of the the messages on the iPhone list asking about the Weight Watchers app.
No, I don't use them!
Poor things. You poor things. I can't really do anything. The list is for practical solutions to what they're asking for. You know, it's not for me to tell them don't do that. I think once I send a message to this -- my iPhone app meant I was able to read my Ketonix. We've got the basic Ketonix, from a few years ago, which just changes color, not got the fancy, nothing fancy. So I am able to detect the color with the iPhone. So I use my iPhone when I can be bothered to test my ketones. I just do it with a, check it with the iPhone to read. I have to hold it against the barrel of the Ketonix, and it will tell me the color.
So I did post that and a few people said, what's a Ketonix? So it's a great way to introduce.
A good lead-in to try and steer them away from bad choices. So talking about Keto, what's an average day of eating Keto? What does that look like for you?
Hmm, breakfast. Well, we normally do eat breakfast because Archie mostly works in Paris as a teacher, so we have breakfast together, sociable. Bacon and eggs or scrambled eggs with ham or other stuff. Sometimes we put cheese in there as well. So that's breakfast. Lunch, I am usually eating cheese. It's the easiest thing to eat alone. Quick and easy and practical.
We do have a fantastic choice here as well. You can make a great meal out of cheese.
Oh, this is a cheese [paradise]. I don't know if you're familiar with Brillat-Savarin. It's very, very, very high fat cheese. It's maybe 70% [fat]. It's called after Jean Anthelme Brillat-Savarin, who wrote "Physiologie du goût" in the 19th century. He was a low carber.
So hence the lovely high fat. Which region is that from?
Do you know, I don't know.
We shall ask Google later.
[Daisy here. It is from the Burgundy region which is in east-central France and also has the most amazing wines which happen to go perfectly with said cheese! Wikipedia ]
Yes, it's delicious. We've got some in the fridge at the moment.
It sounds like the perfect keto cheese.
Oh, it is, it's fabulous. We caused a stir once in a restaurant. We were out with friends. It was in Douet, further north from here. We're in a restaurant and it came to the cheese and I said to the waiter, what's your highest fat cheese? He'd never been asked that before. Kind of what it was, but I'll always eat the highest fat cheeses. Yeah, I love cheese.
Cooked cheese. Well tonight, what we should have for dinner tonight, is cauliflower cheese but it's our cauliflower cheese. Our cauliflower cheese is based on steamed cauliflower and then it's a bit loud on the bacon bits. Big cubes of bacon, they're cooked with sliced mushrooms and then we make a sauce with cheddar cheese--we can get cheddar in the local -- in Leclerc.
Yeah, I can too.
The best cheese for sauce is Cheddar. It really makes the best sauce, so that's what we use, we make lots and we use about 250 grams of Cheddar.
So what else do you have in your sauce, what is the saucy bit?
Full fat milk, that is raw milk that we buy direct from the farm. And we use arrowroot to thicken it because we only use half the amount you would use if you were using corn flour.
Right. I tell you what I use and you'll appreciate this if you like the higher fat. I make a cheese sauce and I, I actually don't bother with any thickener. It does tend to split a little but I'm not too bothered about that. I just mix creme fraiche and grated cheese and that's my sauce and that works very well. So you ought to try that.
Does it heat up alright?
Yes. Yes. I mean I don't make it in a sauce pan, like a sauce. So for example with the cauliflower cheese and I did make this recently, so I'll par cook the cauliflower. I might do that in the oven or I might steam it and then I will just literally mix up the creme fraiche and the grated cheese and I'll mix it in with the cauliflower. And then that goes in the oven.
I think we might try that.
And that works really well at it. Like I say, it might split a little bit, you know, it tastes as good and I'm fine with that. I keep meaning to get some, I think it's sodium citrate. Richard Morris is always talking about that and how you can literally make a sauce with just cheese and a bit of water and you add that and it emulsifies it. But there is another trick actually, and I have used this and it does work. So if you make that sauce with the cream or the creme fraiche -- you know what it's like trying to get cream here. All you can get is that awful UHT stuff. It's not, it's not very good is it?
We get beautiful cream from pasteurized milk. From the farm.
Oh I'm very jealous. Oh, and of course then you would be able to make the perfect clotted cream. You could turn that cream into clotted cream, which would be even better. I'm very jealous. But, so anyway, I take the normal creme fraiche that I buy and the cheese. Like I say now if you put a bit of mayonnaise in that -- sounds weird, but it does act as an emulsifier and it just helps hold it together and then it doesn't tend to split. Not much like a tablespoon or something. And it just sort of acts as a bit of a binder.
We make mayonnaise from the recipe in Ivor Cummins and Jeffry Gerber's book, "Eat Rich, Live Long." [Amazon] There's a mayonnaise recipe in there that works every time.
Oh, I have to have a look at that. I do have the book. I don't remember the recipe. I should look it up.
It's brilliant. Works every time. We used to buy mayonnaise, now we don't because it's so easy. Because we used to find with the traditional mayonnaise recipe, it would misbehave sometimes. You know, we'd often waste an egg because the temperature was wrong. This works every time. It's fantastic.
It's not that stick blender method is it? I know I've used that, and it does work every time, doesn't it?
Yes, it works every time.
You just put your egg and some acid down in the bottom, don't you? And pour the oil on top, press the stick blender down. And just blend it and then you go, it does work.
We do use olive oil. They say, ‘oh olive oil is too strong,’ well, olive oil is traditional--mayonnaise should be made with olive oil.
It's fine if you like the flavor. I don't actually, I've tried making it with olive oil and it's just too strong for me. But yes, I mean, I can imagine delicious. If you really liked the flavor of olive oil, but it's a little bit too strong.
It's also best if left for a day or so.
Hmm. Just to let the flavors develop. Yeah,
Mmm. Well, it sounds like you've got a great dinner -- loaded cauliflower then basically.
Yeah. Yeah. That's, that's usually what we have on a Monday night. We can pick up the BBC television by satellite. On a Monday evening, we just eat cauliflower cheese and watch "Only Connect" and “University Challenge”, which just tells you what nerds we are.
I was going to say it doesn't surprise me that there are programs that you enjoy. I can, I can imagine. Going back to how you mentioned earlier, your shared passions of things like cryptic crosswords, it sounds like it fits in perfectly well. That will be an enjoyable, we're actually recording on a Monday, so yes, that's your evening planned ahead. It sounds great. It's been wonderful talking to you today and hearing your story. I knew it would be interesting. Maybe you could leave us with a top tip.
Um, you know, I was thinking-- don't stress about things. In a hundred years time, what's the difference going to be? Don't stress. Life's too short to be stressed.
That's very true.
Something funny I have to tell you. I have a particular favorite musician, but that's not relevant to this. But something he said in a film about his life was, if you wake up in the morning, and you're not hurting anywhere, you're dead.
Yes. That's probably kind of true.
So don't stress about it. If it hurts somewhere, you're still alive.
You mentioned earlier about when you've had significant trauma early on, you just, you get to accept things and move forward the best you can and you might as well see the best in things as much as seeing the bad, because you're going to enjoy life more. But as we said before, it sounds to me like you've got a great support system around you with, with the wonderful Archie and your dogs and cats, too. And it sounds like they all really, really help you have the positive outlook that you do.
Oh Archie's brilliant. I can't believe I've still got him because five years ago he had esophageal cancer. But he recovered. He recovered because he'd been eating keto.
So he's been through his health traumas too.
Yeah. And that was caused by medication, that was caused by an anti-inflammatory med.
Right. And has eating this way benefited him too?
Oh yeah. I mean, he was eating this way anyway, but he got very, very strict and I mean, for a time he couldn't even swallow, so it was just awful. But he was able to fast relatively easily compared with someone who wasn't used to this sort of thing. He's actually completely clear of cancer. I mean, has it been now since, well, less than a year after he was diagnosed with it, he was pronounced clear of it, which is very unusual.
Yes. That is very unusual. And isn't that one of the kind of cancers that is generally quite difficult to get rid of?
It's a very deadly cancer.
I thought it was. It sort of came to mind. I was thinking that.
One of the most deadly. He avoided surgery, had chemo and radiotherapy, one cycle of it. Did keto all the way.
It's difficult to say, isn't it? Because you can't do that test study of repeating that experience not doing keto.
No. But you see enough people who don't do it and don't survive.
Exactly. So it sounds like it certainly played a part.
in my family. Low carb and Keto. Well he survived. My brother has a brain tumor. He's lived with it now for seven years. Went low carb and his doctors can't believe it either, so.
Wow. Yeah. That sounds like more than a coincidence to me.
I think so, yeah. I mean, if I had a cancer, that's how--I hope I wouldn't! But if something occurred--because you can't avoid all the risk factors, just like me, I didn't mention the heart attack, of course. Yeah. After the stroke, five weeks after my stroke I had a heart attack. But that was just, once again, it was one thing and I got over it. I refused to take a statin.
Oh, good for you. Yes. I can't see how they benefit anyone really.
I argued with the cardiologist at the hospital. We didn't get on, so I found another cardiologist to look to all the medication I was taking. Oh, you take enough.
Yeah, Let's not add another one that really won't do you any favors anyway.
Civilized man anyways, he could tell just as well.
Oh good. Well thank you very much. Thank you for sharing your story. It has been wonderful.
Thank you. I've enjoyed it actually. Yes. So I forgot the odd bits to the end, there you go.
That's okay. I hope your weather improved, but I hope you're not sending it down my way. I've got a nasty feeling you are!
I'm afraid we might be.