Phillip - Interview 02

Age at interview: 72

Age at diagnosis: 71

Brief Outline: Phillip had a TIA in 2008. His arm felt heavy and his vision was affected. He went to the GP next day, and 2 weeks later had a carotid endarterectomy (surgery on an affected artery). He is taking part in a TIA research study.

Background: Phillip is married with 2 children. He is a retired physicist and physics teacher. Ethnic background' White English/Australian.

More about me...

Phillip woke up one morning in 2008 and found his arm felt heavy, as if he’d slept on it awkwardly. When he got up, he noticed some perception problems picking things up accurately and knowing where his hand was. But after a while the symptoms went away and he cycled into town and had a normal day. When his wife came home from work that evening she told him he should see a doctor anyway, so he rang for an appointment next morning. He was immediately given an appointment when he explained what had happened and when his GP saw him she said it might have been a stroke. She referred him that afternoon to a specialist stroke clinic.
He went in on the bus, still not really expecting anything would be found. After a series of tests and scans, it was discovered that he had a 60% blockage from a furry kind of deposit or ‘plaque’ in his right carotid artery, and it was recommended to him that he have surgery. There was then a discussion between the research team, who wanted him to have surgery urgently, and the surgical team, who said they had no spare beds for some months. Eventually a compromise was reached that surgery would be in 2 weeks. Phillip feels this would not have happened if he had not been in the research study.

Phillip and his wife did a lot of research on the internet, using their skills and contacts as professional researchers. He found it very hard to decide whether to have surgery – the evidence seemed to suggest that if he was going to have another TIA it was most likely to happen in the next few days. But if he got as far as two weeks without another one the chances that it would happen again would be around 3%. The risk that the surgery might trigger another TIA or stroke also seemed to be about 3%. But eventually he decided that he could not live with the knowledge that he had such a substantial blockage and that at any time a piece of the plaque could break away and cause another TIA.

He found the surgery quite frightening and felt depressed for a whole afterwards. On the whole he thinks he has had excellent care, but he would like there to be more support after surgery, and wonders why surgeons aren’t more interested to follow up what has happened to their patients longer term. He is deeply interested in the research and would like more opportunity to be involved and ask questions, but he feels the research team are somewhat distant. It sometimes feels as though to them he is just another participant; they want to stick to their research protocol and not get too involved with individual patients. He can understand the need to ensure the study is conducted properly, but would still like to know more, as he feels research is so important.

Phillip recommends anyone who has any symptoms they can’t account for to go to their GP or go straight to the emergency department. Early response is vital.
 

When Phillip woke up one morning he had trouble controlling his hand and arm and recalled, 'it was as if I'd been lying on it'. He noticed it was difficult to control and judge moving his hand when he was picking up a cup of coffee.

 

It was early last year, eighteen months ago, and when I woke up in the morning, my left hand, it felt a bit odd. It was as if I had been lying on it. A little bit of numbness and tingling in my fingers. And then I realised that I could feel the weight of my arm. Normally you’re, you completely compensate for the fact that your arm has weight. You just don’t realise as you move your arm around that it’s heavy. But suddenly I realised how heavy my arm was. And also I thought, “Well, I just slept on it”, right? And I sat up and had a cup of tea and it was already starting to fade away, the symptoms were vanishing. But I did have a problem with holding things, not holding things, but if, normally when you close your eyes, you can shut your eyes and you can put your finger more or less on your nose, like so. You know where your hand is. But in this case I didn’t. If I looked at my hand, I could easily pick up my coffee and I could put it down again. But if I wasn’t looking at my hand, I really wasn’t too sure where it was. I think this is called perception and it had just disintegrated.

 

It was a bit worrying, but in three or four hours it had essentially completely gone. I cycled into town, that was working okay. I had my coffee. And by the evening there was a sort of residual symptom, a little bit of, still a little bit of inaccuracy in my hand placement, and a slight sense of difference in my fingers.

And [name], my wife came home from work and, you know, she’d seen this in the morning and I explained I still had a little bit. And she sort of worried and said, “Look, you need to go and see your GP.” So the next morning I went to see my GP and I explained what this was. And it’s a tribute to the National Health Service that you can actually do this. I mean I can call them up in the morning and say, “Look, I think I’ve had this episode” and they say, “Come right in.”

 

And she, she said she thought I’d had a stroke. And I was very fortunate because the practice I go to is a part of the [name] stroke study. And so she called up the [hospital] and they arranged for me to come and visit them at 2 o’clock in, 2 o’clock that afternoon. And so at 2 o’clock I went over there. And by now the symptoms had essentially vanished. I might have had some, but it just might have been, you know, you keep thinking about this, and when you think about things you think they’re there anyway.

 

Phillip eats a reasonably healthy diet most of the time but confessed that he really hasn't made that many changes, although he says that as he has got older his tastes have changed and he eats less anyway

And you haven’t had to make any changes in lifestyle as a result, then?

 

Yes, I have. I - well, I think the answer is probably no. I’m very bad at self-discipline like this, right? And periodically I clean up my diet more completely and then... But, you know, I’m, I meet all the vegetable requirements and salads and all this kind of stuff. And so I’m pretty good. But, you know, I do, I eat probably, I probably do a roast once a week and I probably have a English breakfast maybe once a month. And one of the advantages of getting older is your tastes change, and I’m slowly tending to go off those foods. So, but I just think I’m automatically just by the natural ageing process prefer eating less certainly. I certainly eat about half what I used to eat twenty years ago. And probably do half as much as well, see. And that might be a, that’s probably a big weight problem if I wasn’t rather lucky and my appetite’s gone down. Because if my appetite hadn’t gone down I’d be really in serious trouble with my metabolic balance. No, I haven’t really changed it. No, no, I know this is a very sad thing to say, this is really a very sad thing to say, but, no, I haven’t changed my, I haven’t changed my lifestyle significantly since then.

Phillip's doctor told him it's when a blood clot travels into your brain and causes a blockage

 

And they explained what I’d had was a transient ischaemic attack, a sort of mini stroke, when a blood clot breaks away from some part of one of your veins and travels into your - it must be an artery - it breaks away from one of your arteries and travels into your brain and causes a blockage. This causes some damage to the brain cells, but the blockage gets re-dissolved and then everything recovered. And in my case the recovery was essentially complete.

 

Phillip is a research scientist and knows how to find out clinical information using the internet, but says it's not easy

 

We’re both lucky to be research scientists, my wife and I, so that we’re able to access all of the professional research literature. This is done through my old college, which is in the States, and so I can just get on to the library system and I can read all the Lancet articles and look at all the research and journal publications. And this is a great help in finding out what’s happening. And it’s a bit scary in finding out what’s happening.

 

There’s a problem, there’s a real issue here about education. Because what happened to me was that, yeah - and, you know, maybe it’s arrogant of me to say this - but my wife and I, you know, we’re researchers, we’re incredibly curious, we want to know. We’re never happy to have things just happen. And that being the case, we really looked into this.

 

And we had to work very hard. It’s very hard to find this kind of stuff. And I don’t know how you’d find out.

 

Phillip noticed that other people in the hospital ward did not seem to know much about what was happening to them

 

One of the scary things, I was in this ward and at least three of the other patients were, so far as I could work out, had had the same transient ischaemic attack and were effectively having the same surgery. And yet what was frightening was that none of them seemed to know this. They were just, I think the answer - I think they were just sort of denying anything had gone wrong. Yes, they were going to have surgery. Yes, they’d had this problem watching television and they couldn’t see the television. And this had happened three or four times, and this needed some surgery. And so they were going to have some surgery. And that was probably the knowledge base of the most informed of the three people who were having, as far as I can gather, an endarterectomy.

 

Phillip was able to find out medical information about the advantages and risks of surgery because he worked as a scientist, but says he doesn't know how other people would be able to gather this type of information

We’re both lucky to be research scientists, my wife and I, so that we’re able to access all of the professional research literature. This is done through my old college, which is in the States, and so I can just get on to the library system and I can read all the Lancet articles and look at all the research and journal publications. And this is a great help in finding out what’s happening.

 

And it’s really terribly important to find people who can help you with making this correct answer.

 

I was very lucky. My wife is unbelievably supportive and we have access to all of this material. We weren’t able really to find, searching the actual web out there, any information on this. The [study name] people, we actually called them up and they had to send us the results, because apparently at the moment they’re not available out there on a website. And of course the literature that’s in the journals is really not generally available to anybody. I don’t know how somebody else would make this decision. It’s scary, it really is scary. And, you know, you’ve had a stroke and they’re going to cut your arteries open.

Phillip's wife said she thought he should see the GP, so he made an appointment the next day and the GP told him it looked like a stroke

 

My wife came home from work and, you know, she’d seen this in the morning and I explained I still had a little bit. And she sort of worried and said, “Look, you need to go and see your GP.” So the next morning I went to see my GP and I explained what this was. And it’s a tribute to the National Health Service that you can actually do this. I mean I can call them up in the morning and say, “Look, I think I’ve had this episode” and they say, “Come right in.”

 

And she, she said she thought I’d had a stroke. And I was very fortunate because the practice I go to is a part of the [name] stroke study. And so she called up the [hospital] and they arranged for me to come and visit them at 2 o’clock in, 2 o’clock that afternoon. And so at 2 o’clock I went over there. And by now the symptoms had essentially vanished. I might have had some, but it just might have been, you know, you keep thinking about this, and when you think about things you think they’re there anyway.

 

Phillip's symptoms only lasted a short while and seemed trivial to him, but when he told his wife about them she told him that he needed to see the GP.

 

It was a bit worrying, but in three or four hours it had essentially completely gone. I cycled into town, that was working okay. I had my coffee. And by the evening there was a sort of residual symptom, a little bit of, still a little bit of inaccuracy in my hand placement, and a slight sense of difference in my fingers. And [name], my wife came home from work and, you know, she’d seen this in the morning and I explained I still had a little bit. And she sort of worried and said, “Look, you need to go and see your GP.

 

So the next morning I went to see my GP and I explained what this was. And it’s a tribute to the National Health Service that you can actually do this. I mean I can call them up in the morning and say, “Look, I think I’ve had this episode.” And they say, “Come right in.”

 

Because you do lie on your arm, and when you wake up it is dead. And do I want to waste my poor doctor who’s so incredibly busy time by endlessly turning up and saying, “I woke up this morning and my hand was numb. I can’t see too well”? But of course one can’t see too well for hundreds of reasons. I don’t know the answer here. That’s why I spent the whole day, and by the time it was 11 or 12 the symptoms had virtually vanished and I thought, “Well, okay, whatever it is, it’s gone away.” It was my wife who said, “No, Phillip, you really need to go and see the doctor.” She’s much more prone to go and see doctors than I am, you see, so - and absolutely wonderful, magic decision.

 

Phillip felt unprepared for what had happened and said 'one knows these things happen even though you don't believe you'll have one yourself'

After my wife had told me, “Look, Phillip, you really have to go and see your GP, because you might have had a stroke” I thought to myself, “Wow.” But you know, one knows these things do happen even though you don’t believe you’ll have one yourself. So by the time I’d cycled up to the surgery, which is only about a mile away, I was sort of thinking to myself, “Yeah, maybe, maybe that’s correct, maybe I have had a stroke. That’s rather terrifying. I’m still alive but I guess right now I’m suddenly in a situation where I am contemplating serious change.” And so when I talked to my GP and she explained that that sounded like it was a stroke, it’s called a TIA, a transient ischaemic attack - I’m still not totally sure what ischaemic means - and that the, she was a part of a study and that I should be heading up to the study in [city], I kind of accepted the fact that this absolutely unprecedented and completely unexpected event had occurred, which I was totally unprepared for. And so I was sort of a bit like Livingstone and Speke, wandering around the African jungles. I was just completely in a no-man’s-land, this was going to be... And so I decided that I would look at this as an adventure, because otherwise how else can you look at it? This was a thing that was going to happen to me, and it was going to happen to me willy-nilly and so I’d better just sort of in a sense, “Okay, find out - this is, this is terrifying, but this is exciting” you know.

 

And I, that’s... So that moment of trying to come to grips with what’s happened, I think it would be very important to try and avoid saying to yourself, “No, this is not happening.” Because if this is happening and you’re just denying it, this is certainly the worst thing you can do. And if you’re saying to yourself, “This is happening” and it turns out this is not happening, well, that’s fine. You have gone through a learning cycle, you’ve learnt about this, and if it should happen in the future - and I think these things are rather likely as we, as our age expectancy increases and we expect to get to 102 - I think that you’ve learnt something and that would be very important. So I think that this learning cycle is that as soon as you feel that you have something like this, you have to say, “Yes.” And when you wake up in the morning, and now that I’m older and wiser and know more, when I woke up and this wasn’t working right, my first thought should have been not, “I’ve been lying on my arm”, but my first thought should have been, “Have I had a stroke?”

Phil had an ultrasonic scan which showed that his arteries were blocked to some degree

 

Part of the diagnostics on the first afternoon included an ultrasonic scan. And the ultrasonic scan is a device that uses ultrasonics, very, very impressive technology, to measure the flow rate and to image the artery. And looking at the flow rate, they could see that there was some slight obstruction, it was about a 50 per cent obstruction, to my blood flow. Well, to me that’s a bit scary. That means only half the blood’s getting to the brain that should. And I think I need it all. And I wonder whether that’s a cause of some of this memory loss that people have, simply partial blockage. I’m sure this has been intensively researched. I haven’t looked into this. The thought just popped up right now. And the other part was that they could find that there was about a 40 per cent blockage on my left artery, and there was this 60 per cent furry blockage on my right artery. These furry blockages grow very quickly, and because it’s kind of furry they’re likely to be unstable and to have pieces, fragments that separate and they’re entrained in the bloodstream and into the capillaries of the brain. And so it was as a consequence of the ultrasonic scan. And in fact, looking at this now with hindsight and my picture, this is the magic diagnostic. Of course I’m only pointing at the carotid and I don’t know whether the other arteries have similar breakaways. But I wouldn’t have thought so, because - I’m not too sure on the physiology of this - but my understanding is that the carotid directly connects the heart, presumably comes off the aortic artery and then - so the only, it would either be a blockage in the aorta or - I think that’s the artery - or it would be a blockage in the carotid. So maybe all of these problems are caused by blockages in the carotid artery. And if this is the case, then to find out you just have to run this scan.

 

Phillip experimented with stopping some of his medication because of the side effects. It was difficult to find out which of the drugs was causing his symptoms

These drugs, I mean they’re magic, but they do have the most frightening side effects. You’re on statins, and you become depressed and you’re permanently fatigued, and your libido goes to the dogs, and you’re on these other drugs and they all have similar side effects, and gastric problems. I mean, it really doesn’t do to read all of this stuff.

 

And I’m on them all. And, you know, I mean I get depressed and I get completely tired. And I claim it’s because of my age, but, you know, it’s not, I don’t think it’s really. I became sufficiently worried about this that about a year ago I decided to take myself off the drugs. A self, n=1 test it’s called, where I take myself off the drugs. And I talked with my GP about this and she reckoned if I wanted to do this it was okay and she was happy to advise me about it. And she reckoned I needed to stop each drug for at least six weeks, because that’s how long for you to recover your normal condition.

 

And so progressively over the six or nine months I stopped each drug.  And I got bored with this and I dropped them two at a time and to see whether, if that showed an improvement, I could then go back and work out which one of these two was it. And the answer was kind of, interestingly the answer was indeterminate. Because one’s mood changes, the weather changes, what you’re doing changes. And so there’s so many changes in one’s normal lifestyle that to try and separate from this fact whether I’m on or off the drug, I, the results were never conclusive.

 

But certainly by the end of it - maybe it was just simply psychological, you know, you can, bootstrap is the most powerful thing of all - maybe by the end of it my symptoms were much less.

Phil had an ultrasonic scan which showed that his arteries were blocked to some degree

 

Part of the diagnostics on the first afternoon included an ultrasonic scan. And the ultrasonic scan is a device that uses ultrasonics, very, very impressive technology, to measure the flow rate and to image the artery. And looking at the flow rate, they could see that there was some slight obstruction, it was about a 50 per cent obstruction, to my blood flow. Well, to me that’s a bit scary. That means only half the blood’s getting to the brain that should. And I think I need it all. And I wonder whether that’s a cause of some of this memory loss that people have, simply partial blockage. I’m sure this has been intensively researched. I haven’t looked into this. The thought just popped up right now. And the other part was that they could find that there was about a 40 per cent blockage on my left artery, and there was this 60 per cent furry blockage on my right artery. These furry blockages grow very quickly, and because it’s kind of furry they’re likely to be unstable and to have pieces, fragments that separate and they’re entrained in the bloodstream and into the capillaries of the brain. And so it was as a consequence of the ultrasonic scan. And in fact, looking at this now with hindsight and my picture, this is the magic diagnostic. Of course I’m only pointing at the carotid and I don’t know whether the other arteries have similar breakaways. But I wouldn’t have thought so, because - I’m not too sure on the physiology of this - but my understanding is that the carotid directly connects the heart, presumably comes off the aortic artery and then - so the only, it would either be a blockage in the aorta or - I think that’s the artery - or it would be a blockage in the carotid. So maybe all of these problems are caused by blockages in the carotid artery. And if this is the case, then to find out you just have to run this scan.

 

Phillip found it quite hard to weigh up the risk of having a second TIA against the risks of having the surgery

But the odds looked like, they claimed that there was about, possibly about a 3 per cent likelihood of my having a second TIA following this. Or I could have the surgery, this endarterectomy, where they cut open my carotid, carefully scrape out the clot and sew, stitch everything back up together again. And we investigated that. And the national average of having an episode during surgery or close, caused by surgery, is about 5 per cent.

 

So, however, I was at [city] and at the [hospital], and their track record is very, very much better. The very best that the nation has is about 2½ per cent, the very best surgeon. And it’s a very dubious paper, this, because I have the feeling there was some cherry-picking in that hospital and this surgeon only did the cases that he knew wouldn’t go bad. And the surgeon who was doing mine, she was about 3 per cent, which I realised was pretty outstanding for the operation. But on the other hand it was exactly the same risk as leaving the clot there and not getting any worse. This is a nightmarish decision because you really, the data you have really isn’t statistically sound enough to make a decision. But you do know that frankly you’re going to close your eyes and blindly make a random choice. And it’s terrifying. Because if you actually went into surgery and came out and you’d had another stroke, which is the most common problem, that another clot breaks out during the trauma of the surgery, or just you have a, surgery is risky under its own account, and so you suddenly find yourself frankly semi-vegetative, you’d really hate yourself for the operation. But the thought of living for the rest of my life with this sword hanging over me waiting for the chunk to break off and get caught up in my brain capillaries - so I finally decided to go with the operation. But it was with most serious misgivings.

 

So, okay, two weeks later you realise the symptoms have completely vanished now. So it’s very hard to face surgery when as far as I’m concerned I’m cured. And it’s a hard decision. And it’s really terribly important to find people who can help you with making this correct answer. I was very lucky. My wife is unbelievably supportive and we have access to all of this material.

He describes what it was like having a carotid endarterctomy operation under local anaesthetic to remove a blockage from his artery

But anyhow, so I had these doubts about having the surgery. And the anaesthetist was really tremendously supportive and even whilst he was prepping me for the operation he was explaining that, “If you really don’t want to go with this, you can still pull out.” And I felt that the fact that the hospital maintained this position that it was my choice till the last minute, if - that was to me a very encouraging sign that these people were really up, right up there.

The operation’s a bit peculiar and I don’t think I’ll go into the details here. But because they want to make sure that you don’t lose blood circulation to the brain, when they cut the carotid open, of course, there’s no circulation to the left side of the brain because peculiarly [pause] - to the right side of the brain, there’s no circulation to the right side of the brain, because peculiarly the right side of the brain is what operates the left hand. So far. And because they want to make sure that the right side of my brain is still functioning, they don’t actually give me an anaesthetic. I’m not unconscious. In fact they want me to talk to them, they want me to describe my condition. They keep asking me, “Who is the Prime Minister?” and “Where is the operation happening?” and “Which county are you in?” and “Would you tell us little stories.” And, well, I’d just recently had a wonderful adventure, so I told them all about this wonderful adventure. I do hope they were entertained. And it’s a bit scary because you can feel your life symptoms getting better and getting worse as these operations proceed. You know, your blood pressure varies and things like this happen, and suddenly you have this terrible feeling that you’re sinking.
 
But, but also it’s a very great advantage to have not had an anaesthetic, because as soon as you’re all out of the operating room, you’re essentially well. And within ten minutes I was sitting up and hungry, but they wouldn’t feed me, and chatting to people and, within an hour or so - my memory of the times might be wrong. Other people say I was, it seemed like I was gone forever. But as they were sitting in the ward waiting for me, wondering whether I’d come back on alive or dead, they probably felt it took a long time too. Recovery was complete. I didn’t have any symptoms before. I don’t have any symptoms after. The surgeon very carefully laid the scar in a crease in my neck, of which I’m getting too many, and so you can’t even see the scar. And so when I explain to miscellaneous doctors that I’ve had this operation and it was on the right-hand side, they look and they say, “No, no, it must have been the other side”, as if I didn’t know.

When Phillip saw his GP, she explained the practice was part of a research study. As a researcher himself, he was willing and interested to take part, though he still didn't quite believe that he had had a TIA

Now that’s, that’s a very, that’s an interesting question. I went and saw my GP and I explained what had happened, and she said, “I think you’ve had a stroke. Now, we’re a part of the [study name] programme and so what I would most strongly recommend to you...” - and she probably said something like this, but, you know, my memory has faded, and all that happened before erased everything. It’s eighteen months ago. I have trouble remembering things that are eighteen months ago. Always have. It’s not part of age.

 

And she said she recommended this. And obviously she gave me the choice, because I said, “Yes, do, please.” And so that’s when she called it. She didn’t say, “Sit up. I’m going to call.” She did ask me a question, because she said, “Would you like me to contact these people?” And I said, “Yes.” I said, “Yes, do let me contact these people. Yes, please.” But whether she offered me an alternative, like, I don’t know what the alternative would be. Presumably the alternative - yeah, I know what the alternative is because it’s on the notice board about FAST. And the alternative is, “Go directly, do not pass Go, do not collect 200, to your nearest Emergency.” So I guess in my case there’s a little local hospital, sort of one of these daytime hospitals, but it does have an Emergency during the day. And I suppose with hindsight, and of course this is all because it’s happened before, but with hindsight, if this happened to me, I’d go and see the doctor and she would send me off to our local clinic. And I would trundle over there. And they’re pretty effective too. And so they would presumably have then stuffed me into an ambulance or put me on a right bus for the hospital.

 

But, no, I don’t really know the answer to that, because it wasn’t important. She said, “Look, there’s this research study. Would you like to join it?” Well, of course, I mean, obviously I have to join it, don’t I? I mean, that’s what I do. I’m a researcher. I said, “Oh, wow, that’s great, fascinating”, not thinking that I’d had any event, and I was just going to be a control.

When Phillip had a scan it showed a blockage in his carotid artery. He was told he'd have to wait months for the surgery, but the research team insisted that he needed it sooner

And so they ran me through the most comprehensive testing mill. It was, I was there until 5.30. And by now the symptoms were gone. And they explained what I’d had was a transient ischaemic attack, a sort of mini stroke, when a blood clot breaks away from some part of one of your veins and travels into your - it must be an artery - it breaks away from one of your arteries and travels into your brain and causes a blockage. This causes some damage to the brain cells, but the blockage gets re-dissolved and then everything recovered. And in my case the recovery was essentially complete.

 

But they did realise that my right carotid artery had about a 60 per cent blockage with what they called a brushy plaque deposit. And that they claimed 60 per cent, you should have surgery. So they wanted me to have surgery on this to remove the clot. And this was kind of, suddenly kind of terrifying. They’re going to actually cut my carotid artery open and sort of scrape it out with a toothbrush. I hope it’s a little more subtle than that. I never did find out. And that was a rather terrifying thought. And they also explained to me that, “This has to be done now” because the most likely time for a second event is immediately after the first event. Having survived 24 hours without a second event, my statistics of having one were much less, and every day that passed they would get less, but they were still very high. And so what I really needed to do was have the surgery done immediately.

 

Now it was an interesting feature of being a part of one of these studies, they, the researcher called the hospital that does the surgery and talked to them about having me admitted. And they explained they couldn’t do it for months, they didn’t have a spare bed. And he explained, “No, you’re going to have to do it now.” And somewhat to my amazement, about 30 minutes later one of, the head of the surgical department turned up to talk to them about this. The advantage of being a part of this study is that there’s power, you know, there’s authority here.

 

And so they finally compromised on about two weeks, which the [study name] thought was too late. And the surgeon thought it would take me at least two weeks to get my head facing in the right direction. And actually that was quite right.

Phillip was asked if he'd take part in an extra MRI scan for the research. He was very keen, but never heard back from the research team and was disappointed by this

I had a CT scan and I had, you know, ECG. And, I think that, yes - now that’s quite an interesting question. I got a mysterious phone call once about some guy who claimed he was part of the study and he wanted to, wanted to know if I was interested in doing an MRI. And so, I was away, I’d been away for a week. When I got back I called him. And I got his answering phone and I explained, “Yes, I’m Phillip, I’m whoever I am, and I would just love to do this.”

 

And he said, and he never called back. And I called him several times. And one time I got his wife, who took my name and address and said that he’d get her to call, him to call back. But he never did. And so then I contacted [study name], which isn’t all that easy because, you know, it’s a study, it’s a research study. There aren’t really people. There’s no pointer. It’s run by a professor, and I’m not going to call him because I don’t think he’d like to have one of his numbers in his statistics calling him up on the phone [laughs]. And, and nothing, I never found out about that. So that didn’t happen. And it was a bit, a bit unsettling because I really would like to be involved. You know, I would like to participate, partly for my own curiosity and answers, and partly because I don’t know how many people they have who are completely time-free and can go and do anything they like. You know, if they want me to come and stay with them for a couple of weeks, that’s fine, whatever. But that’s not the way the study works and that’s not their study protocol. And I think they’re probably right, because you can’t afford to have a loose cannon in a study protocol, because it makes the whole study look a bit, it could so easily get skewed by a few individuals.

 

What about the research nurses who work on the project? Do you feel able to contact them?

 

No, I’ve never contacted any of the nurses except to go there and have a check-up. They’re very friendly and they’re very helpful. And whenever I mention these things they’ll say that, “I’ll refer them to the researcher.” I’m a bit puzzled by the way the research does because each time I go it seems to be a different researcher. I guess what happens is that there’s a half a dozen researchers and they only have a couple of hours a day, a couple of hours a week when they’re actually in clinic. And so when you go you just meet a different researcher. But, no, I’m not, I just, I think I’m talking to the wrong people. I don’t really think it’s a part of the clinic to involve, it’s a part of the study to involve in any kind of intervention activity. I mean, you know, initially it was a non-intervention study. For the first three years they were just following people. And then they realised that this business of having a drug regimen, which is its own scary, scary thing, that this drug regimen really produced a fantastic improvement in the statistics. So that what they did was, they decided that it was not correct to be doing this with blind control studies. And so now everybody who joins [study name] is immediately put on the drug regimen. There’s an automatic drug regimen and everybody is put on it because this is sort of the one that works best. And it’s not tailored for the individual. And that’s probably right. We all have the same disease.

 

And - oh, as part of one of the studies of [study name] is you get to wear a pulse monitor for 24 hours, which takes your pulse constantly. It produces a constant plot. And so at the end of the study they take the memory card, the SD card away and they have a full record of your heart, of your pulse for the last 24 hours. And what they discovered on this that at 4 o’clock in the morning, plus or minus, there were fourteen heartbeats that were at twice the frequency and, which they claimed was an atrial fibrillation, an AF. And they wanted to put me on an additional drug regimen because of this atrial fibrillation. And I looked at the printout very carefully, and it seemed to me that the clock in the monitor must have quit, because it was exactly the same trace, it had just gone to half, twice the speed. And I would have thought if you had an AF you’d expect a different-shaped trace. And I talked to them about this. And, you know, I’m not sure that the technician you’re talking to really wants to know what my opinion is [laughs]. And so anyhow, so they wanted to put me on this drug regimen, and I sort of protested about this because I felt that this was almost certainly a glitch in the instrumentation, and I wanted to do it again. And finally what happened was I ended up going and seeing one of the senior doctors in the operation and he said that, well, whether it was an AF or not, he felt the whole thing was irrelevant to the discussion, “Fourteen at 4 am, no worries.” And so I’m not taking this additional lethal piece of chemistry. 

Phillip felt confident in his decision about whether to have surgery because the anaesthetist gave him all the information he needed

And then of course suddenly I’m in a hospital ward, and this is a new experience completely. Well, you know, I’ve been in other wards before, but it feels like it’s new because I’m in a different ward for different things. And I have to say that there I really found that a very supportive environment. Maybe, I think this is obviously almost ward specific, but this particular ward group were very supportive. They didn’t really wake me up at 4 o’clock in the morning and make me eat breakfast. None of this stuff, you know.

 

But we had some interesting discussions because I kept asking them questions about things and they kept sort of saying, “Yeah, never you mind. We’re going to do this, and just don’t worry about that.” But I think that’s just because they sort of felt I was just being difficult. And they may well have been right.

 

The interaction with the - of course always what you meet here is really not the surgeon. What you meet is the anaesthetist. And so the interaction, the most important interaction, oddly enough, is with the anaesthetist. You do meet the surgeon and, you know, and it’s kind of scary because these are the hands, you know. And, but in general the surgeon is just - I don’t understand this, but it seems to me that it’s very much that he, he’s just doing an operation on a person, and he really doesn’t want to know who the person is. And maybe this is simply because he really can’t afford to have any personal involvement, because it would make everything too tragic. Maybe I’m making all of this up. But the anaesthetist is the person who tells you what the operation is, who tells you what the surgery is. It was the anaesthetist, besides the [Study name], who really explained to me the processes and how this had all happened and the development and all of this. And he was very interested, you know. He, I was very responsive and so he was very happy to spend a fair amount of time talking to me.

 

I had these doubts about having the surgery. And the anaesthetist was really tremendously supportive and even whilst he was prepping me for the operation he was explaining that, “If you really don’t want to go with this, you can still pull out.” And I felt that the fact that the hospital maintained this position that it was my choice till the last minute, if - that was to me a very encouraging sign that these people were really up, right up there.

Phillip was fully recovered after a couple of days and says he was diagnosed with a TIA but he thinks technically it may have been a stroke

And so they ran me through the most comprehensive testing mill. It was, I was there until 5.30. And by now the symptoms were gone.

 

And they explained what I’d had was a transient ischaemic attack, a sort of mini stroke, when a blood clot breaks away from some part of one of your veins and travels into your - it must be an artery - it breaks away from one of your arteries and travels into your brain and causes a blockage. This causes some damage to the brain cells, but the blockage gets re-dissolved and then everything recovered. And in my case the recovery was essentially complete.

 

The brain scans and the CAT scan didn’t find any problems. So everything had cleared up. There was no outward sign of any symptoms. My heart was fine and my brain seemed to be working fine. They did CAT scans and EGTs and all this kind of exciting stuff - ECGs, ECGs. And so it had all gone by then. Though there was still I think even 48, 36 hours later some residual symptom - which might still be here. And they claimed that this technically meant it wasn’t a TIA, because technically the TIA cuts off at 24 hours. If it’s more than 24 hours, it’s a full stroke. But they were very generous and let me in [laughs].

Phillip said that talking to other people on the ward gave him a sense of comradeship and he felt less alone but in the end being ill can still be a lonely experience

And I also found myself talking to the other people in the ward gave me a sense of comradeship. I didn’t feel quite so alone in the sense of where I was going, though, as I said, they were to me rather terrifying, that they were so completely not wanting to know what was happening. And here was I avidly trying to get hold of my spreadsheet and find out what my temperature was and what my pulse rate was. “What drugs are they putting in this wretched drip?” and this kind of thing.

 

And I mean I had lots of company, my family came round and clustered round. Well, actually kind of - I think they came to eat the grapes. And my wife was fabulous and supportive. And friends from London came up, very wonderful. But even though there’s everybody here, you know, in a sense you’re in your own little isolated world of, “This is, this is happening to me. It’s not happening to them.” It was a very interesting expression.

 

It’s lovely to have people come and help - and that’s another thing I would say, that if you have people who can come and be with you, it’s wonderful. At the time you really won’t want it. You’ll want them to go away so you can sit there in your own little bubble of fear and terror and concern. And, but it’s just nice to have people there. And so I was extremely lucky because people came and they were very friendly to me and very helpful.

Phillip would have liked to be able to share experiences with other research study participants.

 

I would like to be able, it would be nice to have a way where I could meet other people who’ve had this problem, and talk to them about how they’re adjusting to life and how they’re getting on, and how this kind of thing happens and what changes it’s made to them. I mean I know this is a silly thing to say, but if I have this ongoing problem and it turns out that they all have the same ongoing problem, then a problem shared in some sense is a problem minimised.

 

Or maybe this is the case because I tend not to be a group person. So, but I feel that it would be nice if sort of, you know, every three months we sort of had a jamboree when all the guys, you know, when the whole group of people in the study were invited, not part of the study but just a sort of general get-together. Or a spreadsheet with people’s names and a brief bio and people who didn’t mind being contacted to give experience. And this would be terribly important before the event. If there had been an easy way I could have contacted people who had had this event that I could go and talk to or call on the phone or exchange emails, just to get some basic experience, you know. “Fred, I understand you had a TIA, and I’ve just been diagnosed with one. And what happened and how did it turn out? And what mental process did you use to decide to have surgery, to have the operation? And what were the consequences and how did it, you know, and how did it turn out?” and kind of questions like this. It would sort of, like I said, it would be a, in a sense it’s a rehearsal for what I’m going to go through. It would prepare me a little bit for what’s going to happen. You know, you walk into the hospital for the surgery and, and there’s a terrible sense of loneliness because, you know, you just recognise now that, you know, that this is me and this is…..

 

Phillip's wife didn't panic when she heard the diagnosis. She wanted to know more about what it meant and so got straight onto the computer to look it up

When you told your wife what had happened, what you’d been told - did she come with you to the hospital?

 

No, no. No, she was working. As I say, she’s a very focused researcher and so she said - and by now everything had vanished. So we were sort of, you know, at the back end of the curve, as you would say. You know, we were coasting downhill, we were at the bottom of the hill. This crisis was completely over. So it was just a precaution, really, which I was very embarrassed about because there was no, I was going to go and see my GP and say, “Look, I had these symptoms, but they’ve all gone.” And she’s going to say to me, “Well, why are you wasting my time?” That’s what we kind of expected to happen. And, no, no, so she’d gone to work. And I went and I saw my GP. And then I called her and I said, “Look, my GP thinks that I might have had a mini-stroke and sent me off to the [hospital].” And she said, “Do you want me to come?” I said, “No, no, I’m okay.” And so I trundled up there, and I was there until 6.30 or something. That was because of the row with the surgeon. And then I, and I called her, then I called her and said, “Look, it’s all over. I’m on my way home.” She said, “Do you want me to come and pick me up?” I said, “No, no, that’s okay. I can, there’s a direct bus.” So I got on the direct bus and that worked out fine. So, so, no, she had, there was no panic there. And then I got home and I explained everything that had happened to her. And she said, well, she just reached for her laptop and she picked up her laptop and she started working on her laptop because she wanted to know what we were talking about. That’s the way it went. And the computer gives you magic access to these things.

Phillip realised a short while afterwards that the risks after a TIA are high, which could be a frightening feeling to come to terms with

You know, that is, this issue of mortality, it’s such a scary thing because it’s the thing we’re probably in greatest denial about. Because it’s not going to happen to us. And, you know, I mean this is a very odd thing, because I know it’s going to happen to me. And it, and I can’t really accept this fact, you know. I mean look, I’m 72 and I don’t really have a valid will, because it’s, “I don’t need a will. This isn’t going to happen to me.” And, you know, not - you do have moments of mortality. Somebody else is driving the car and you look up and you realise that they’re in the wrong lane and there’s a truck coming at you, right? And you get this impression that all the blood has drained out of you, right? And this is gone in a second, right? And you’re shaking and you’re completely weak, you’re just devastated by this sudden... I think that is a sudden realisation that mortality is really there, you know. It happened to me recently. I was on holiday in India and we spent a lot of time on the roads. And if you want to get close to traffic mortality, do it in India on the roads [laughs].

And so, you know, and so suddenly I’m thinking about this kind of thing. You know, one tries not to think about it. That’s the essence of denial, if you don’t think about the consequences, and so you’re in denial. I don’t get a will. I’m in denial. I’m not going to die. I can’t face dying. I can’t understand dying. I don’t know how to handle dying. I mean, I just don’t want it to happen. There’s nothing I want to happen less. So I – bah. And suddenly somebody said to you, “You’ve just had a stroke.” I mean, people die of strokes. They really do. And so suddenly you’re standing there thinking, “Gee, I’ve just had this event, and they’re worried about a recurrence. And the likelihood of a recurrence is really high in the first 24 hours. I’ve discovered this. It’s about 3 o’clock in the afternoon now. I’m sitting on the bus on the way out there, I’m thinking to myself, “What happened?” Yeah, it’s a peculiar, it’s, I think it could be really terrifying. But I’m in such, such successful denial that it doesn’t really frighten me.

Phil felt depressed for some while afterwards but realised later that it was almost inevitable after experiencing surgery

There was a time early on in this when in the morning I couldn’t get out of bed. I’d just lie in bed, and I just didn’t have the drive, I didn’t have the initiative to get out of bed. I would just lie there. I could lie there till 11 or 12 in the morning, just doing nothing. And of course this also drives depression, because I’m just lying in bed doing nothing. I thought, “This is so depressing. Get up.” “Oh, I can’t, oh” you know.

And retirement is very bad for this because there is no real driver to do, to get up and go. And finally I just convinced myself. And morning, the morning comes, I swing my feet over the edge of the bed and I stare out the window and I get up, never mind, willy-nilly. And it works. It’s a mechanistic solution to this problem. I still have these black moments and black depressions. And maybe it’s the drugs and maybe it’s life and maybe it’s me[laughs].

 

Of course everybody seems to have a depression now. It’s kind of the fashion. But, so that was a point that it took me a while to realise. A lot of what I was feeling had nothing to do with anything but the fact that I was just simply recovering from having my neck cut open, the circulation to my brain shut down for a couple of hours, the whole thing cleaned out, the whole thing stitched back up together again, all of this trauma. You know, no wonder it takes you six or eight months to recover from that. You - I broke a couple of bones in my left foot recently. And it’s three months later and I, it’s still not fixed. And that’s a trivial injury. So, you know, six months after surgery is not much. Maybe one should try and avoid worrying. One should have less self-analysis, yeah.

Phillip is keen to do anything he can to help the research team. In return he hopes they will 'go the extra mile' for him

I’m in compliance. If they want anything from me, it’s theirs. They’re doing this wonderful thing for me. And if they wanted to cut off the inch of my end finger, so long as they did it off my right hand, because I’m left-handed, then they can have an inch off my left finger, right finger. Well, they’d need a good reason for that. So, yes, undoubtedly if they asked me whether they wanted to take samples, and I’m sure, they may well have, in fact I’m almost certain they would have, wouldn’t they? Then I would have certainly said, “Absolutely, absolutely.” If they wanted to cut a quarter of an inch off my carotid and stitch it back together, and if they felt that was suitable I would have said, “That’s absolutely wonderful.” Because I, first of all I feel that if you’re very enthusiastic it gives them motivation. Because you’re on their team.

You know, if I can get myself, if I can get them to think I’m a part of their team, then I think they can maybe go the extra mile. I mean, you know, it, it’s okay but, you know, my surgeon had done, has done five hundred operations of this nature, five hundred endarectomies, right? So realistically I’m a forgettable cipher in her life. And so she’s going through the mechanics of being a technician and a precision surgeon and getting it dead right. “But wouldn’t it be nice”, I think in my mind, “If I can get an extra little bit so that there’s this tiny little bit extra concern?” That’s very selfish of me. And we all want to be a little bit privileged, don’t we? It’s instinctive in human nature. I’d like to have a tiny bit of privilege. That’s why [study name] is so wonderful, because it gives me this tiny bit of privilege. And so if she had wanted something, I would have absolutely volunteered, because I felt that would, I don’t want to be a reluctant member in this programme.

He would like more feedback about what the researchers are finding and would like to feel more that he is part of the team. A regular newsletter to all participants might help

And would you like to hear more about progress with the research and the findings? Do you get much at the moment?

 

I get none. I get no, there’s no - frankly this is a research study, it’s a rather academic research study, I think. The results are published - as far as I know there’s only one publication so far. This publication is not readily accessible. And there are some public handouts, but the public handouts really don’t have any technical content, which is what’s important to me. I would really love to be a part of, an actual part of this research programme. I would like to be in there. I would like to be working in a sense with them. Find out what’s happening, find out what things need to be done, finding out how I can contribute. Maybe that’s not, you know, I haven’t ever worked in a medical research study, maybe that’s not how medical research studies are done. Maybe they set up a protocol, they write down a strict set of procedures and they strictly follow these procedures, and they don’t wander from them because that might in a sense muddy the water. But, no, I have no idea, since my surgery, when I read the papers that were available at that time. I occasionally check and there hasn’t been anything new. I checked about two months ago, so if something happened in the last two months then of course I’m incorrect. But I’m going to find these things by accessing them through my fortunate research contacts, calling them up and asking them. There is no contact point. There’s nobody I could call. And if there is, I don’t know who it is. It might be just I got it wrong. But, you know, I have worked hard. Every time I see my nurse I do explain that I’d like to know more, I’d like to be more involved. I’d like to have another - I rant on about this [laughs] - another ultrasonic scan. I’d like to know how the research is going. I’d like to know what the, with their newest protocols, if they have a new recommendation for a new drug regimen. Because I’ve just, that’s it - I’m taking these drugs they recommended to me eighteen months ago.

 

Now maybe as a consequence of this research programme they’d recommend a different ratio, a different mix, a different set of drugs. Would they have contacted me? I don’t know. They may well have and nothing’s changed. Maybe they would tell me about changes, and there’ve been no changes. I find this dissatisfying. If you’re part of this, I think - I mean, look, they only have to send an email to everybody, don’t they? It can’t be too difficult to send a monthly report, you know, the [study name] monthly report to the members. Or something like that, you know. I just, it’s puzzling to me, because that’s not how I would run research. But then I’m a physicist and so our research is sort of somewhat different anyway. It doesn’t involve people [laughs].