Peter - Interview 36

Age at interview: 59

Age at diagnosis: 49

Brief Outline:

In 2000 Peter was diagnosed with a very rare form of pancreatic cancer, a neuroendocrine tumour. He had chemotherapy followed by a distal pancreatectomy, splenectomy, and removal of tumour from portal vein. Since then he has been well.

Background:

Peter is a journalist. He is married and has two children. Ethnic background/nationality: White British.

More about me...

In the late 1990’s Peter started to have pains in his lower abdomen. that would come and go. It felt as though some kind of poison was being injected into his body. The pain might start at 7.00 p.m. and continue until about 3.00 a.m. the next morning. It seemed to come ‘out of the blue’. These pains occurred very occasionally for several years. He had no other symptoms.

Peter found it hard to reach a doctor while he was in pain, and no one could say what was wrong. Some doctors suggested he might have irritable bowel syndrome or some stress related condition. He had various investigations, such as a CT scan and an MRI scan.  These did not shed light on the problem.

 

At one time Peter tried a vegan diet. This made him feel good and the pain stopped. The cancer was still growing but the symptoms were masked by his diet, so Peter believes it was one of the most dangerous things that he did.

 

On the morning of January 1^st 2000, Peter had particularly bad pain. He went to see some other doctors and one looked at a scan and saw that there was an abnormality in Peter’s pancreas. Peter had a biopsy and the doctor said that it was not a cancer, but that surgery might be necessary.

 

Then Peter saw another doctor, who looked at the scans. This doctor told Peter that he had a large neuroendocrine tumour. They said it was a rare form of cancer and they could not remove it with surgery. He told Peter that he might live for months or perhaps for a few more years.

 

Peter and his wife were shocked at this news, but determined to find a doctor who could help. Peter saw several surgeons in a short space of time, hoping that one would be able to operate. They all said that the tumour was too big for surgery, so Peter then looked for an oncologist (cancer doctor) who could shrink the tumour with chemotherapy. The oncologists he saw in London didn't think there was anything they could do. By February 2000, things looked bad.

 

Peter and his wife then sent copies of Peter’s scans to five hospitals in the USA. Doctors from one of these hospitals said that there might be something which they could do to help. So Peter and his wife flew to America for help. They were told that surgery was not possible but a combination of chemotherapy drugs might help (streptozocin, 5-FU and adriamycin). The doctor said that Peter could return to the UK and take the drugs nearer to home. Streptozocin is currently not licensed in the UK and is only available to a small number of people whose specialists think that it may help them. This is known as named-patient prescribing.

 

Peter went into hospital for his chemotherapy, which he had intravenously. He was given unusually large doses of streptozocin. He had chemotherapy during the first week of each of three monthly cycles. The rest of the time he was at home. He experienced various side effects, such as hair loss, and unusual sensations in his limbs. At times his limbs did not seem to be part of his body. One day he had a high temperature, due to an infection. He was rushed to hospital but soon recovered and was well enough to go home.

 

After three months the doctors checked Peter and were surprised to find that the tumour was shrinking. Peter continued with the chemotherapy for four more monthly cycles. By then he was in quite a “fragile” state.

 

After all this chemotherapy Peter went back to see one of the surgeons he had got to know well. This surgeon looked at the scans and said that he would try to remove Peter’s tumour. So in October 2000 Peter went into hospital and had a 15 hour operation, a resection of his pancreatic neuroendocrine tumour, with distal pancreatectomy, splenectomy, and removal of tumour from portal vein.

 

Peter was in hospital several weeks, partly because he picked up an infection. Then he went home to recover. He went back to work after a few months. Since then he has been very well and has a check-up every six months. He lives a very normal life and doesn’t think a great deal about his cancer.

 

We spoke to Peter in 2010.

Peter had a neuroendocrine tumour (a rare pancreatic cancer). He had bouts of severe abdominal pain for years before he found out what was wrong.

The date when your cancer happens is one of those first great mysteries, isn’t it? I mean it’s one of the things that you often ask yourself, and I don’t think you ever get a proper answer. I mean, I had, suddenly; and it was very suddenly in the late 90’s, started getting the kind of pain in my lower abdomen that I had no experienced of before. I mean it was a completely different kind of pain but I wasn’t very familiar with pain at all. I’d had a very healthy life up, up to that point. And so the sudden arrival of these long periods of rising and falling pain was a bit of a surprise. And it did seem to come out of the blue. So I started you know very actively trying to find out what was wrong with me.

 

Did you have any other symptoms?

 

No, I had no other symptoms at all. And the pain didn’t come very often. And part of the early days that I remember was the sort of oddity of having these pains which they, if they started at say 7 o’clock in the evening, they followed a particular course till about sort of 2 or 3 o’clock that morning. It was absolutely the same each time. But they never seemed to happen when I could quickly get to a doctor.

 

Peter says it's important to be aware that doctors all have different skills and interests. They might not be able to spot pancreatic cancer quickly.

But no part of my story is a story of being neglected by the medical profession or indeed I think neglecting myself. I think I had the very best possible attention, the best possible care. But it is a story, it’s certainly of absolute total failure to recognise, you know to recognise this and I think a warning which I’ve given since to people that says just because you think that your consultant is marvellous, and people often do think their consultant is marvellous, or even if people tell you that your consultant is the best in the world, or the best in the country, or the best in Northamptonshire, one should be, take a high degree of skepticism, about this, is that doctors can be extremely narrow in their; the better they are often the more narrow is their knowledge and experience and because they’re interested in certain things, not things in general, so if it’s not what they know about and care about they often don’t see it, or are not interested in it, and that it, it’s a highly fallible business. 

 

And just because people are in white coats does not mean that they are drawing algebra on the, on the wall. It is not mathematics. This is not formal logic, it’s, it is an art that, I don’t know if the other walk of life, some men and women are extremely perspicacious and some are not. And some people are very successful, or seem very successful, very well regarded, and not very perspicacious at all. And some people who are perhaps lesser, not so well regarded, not so famous, can be much more, have a much broader understanding of what might be the problem. And so I think all, everybody should be, you should look at your doctor and say, “What sort of chap am I dealing with here? What sort of person am I dealing with here?” And “What’s he likely to be good at and what’s he not likely to be good at?”

 

After first being told he did not have cancer, Peter was told he had a neuroendocrine cancer and that he had only months or a few years to live.

I remember it very clearly, they said, “There’s something tiny in your pancreas.” I said, “What do you mean, tiny?” So he said, “Well it’s like dogs balls,” I’m not really sure what dogs balls look like, but they, those were the words and definitely it was going to be, it was sort of, the whole thing was played down. It was not a big deal. It was small we’d get, we, and then we’d have to find out a little bit about them, they did a biopsy, they said, and then the whole pitch then was, “Don’t worry, it’s not cancer, it’s, you know we can deal, we can deal with this. You may have to have an operation.”

 

And then I remember it very vividly one evening going to see a very harassed doctor in a big London hospital, who was extremely tired, not someone I’d known before, huge queue outside. It was like being in a bus station. He didn’t know me, we’d never met before. He looked at the things and said, “You’ve got this” that’s the first time I heard the word, “this neuroendocrine tumour of your pancreas. It’s extremely large. It’s totally inoperable, not even close to being operable, and I’m sorry you know there’s nothing we can do for you.” I said, “Oh, that’s not very good.” He said, I said, “What’s the, what, what happened, what will happen, what do I actually?” I think I remember saying,” What do I actually die of?” You know because it, what is the point, he said, “Oh you just fade away,” he said. I said, “Well when?” He said, “Well a few months, a few years, I mean it’s hard to say. A few months, maybe a few years if you’re lucky.” And it was suddenly just like that. After, very kind of, but at least at that point, at least I had someone who would be straight up and had, and we knew what it was. It wasn’t good news but…

 

What sort of specialist was he?

 

He must have been a, I think he was probably a gastro-enterologist I should think. He just looked at the pictures, and what one doctor had calmed me, I’m not really criticising; I mean it’s hard, I can understand their problem. If, if a doctor, if a, sort of sees someone with a tumour in their pancreas, when they say, “You’ve got pancreatic cancer.” And then the guy goes back home, discovers what the prognosis for pancreatic cancer is and is deeply depressed. So you try and perhaps just hide from them the fact that they’ve got pancreatic cancer, until you can discover whether you can do anything about the neuroendocrine, or the standard pancreatic cancer. Until you can find out whether you can do anything about the neuroendocrine sort. 

 

Peter told friends that he had a rare type of cancer and that although his prognosis was bad his type of pancreatic cancer was less bad than others.

What sort of reaction did you have from friends and colleagues when you said that you had cancer? This, this was the year 2000.

 

Mm. It was, one of the problems with the pancreas is that people, I mean journalists they don’t know a lot about anything, but they know a little about a lot of things, and so it was, was and still is quite difficult to get over the fact that I had a, was lucky to have a very rare kind of pancreatic cancer, or comparatively rare kind of pancreatic cancer whose prognosis although very bad in my case, because it had got so big, is not as fundamentally bad as other kinds of pancreatic cancer, or the main kinds of pancreatic cancer. And since neuroendocrine tumours were not well understood by anybody, well doctors hadn’t heard of them, you couldn’t really expect my colleagues to have done. So there was a certain amount of concern that I was underplaying this but, one, I was, I was able to persuade the people that mattered, the people that mattered to me about the, of the exact truth of as to what was going on, which was exactly as I’ve set it out to you as I, as I discovered it.

 

Peter had streptozocin, fluorouracil and adriamycin to shrink his tumour. He found it hard to move his limbs, had an infection and his hair fell out.

However at the time when I was taking the chemotherapy the effect of being on a good diet, and not working and also feeling that something was being done, you know, that that no-one thought the chances were very good, but at least something was being done. I felt really rather good that first week in hospital.

 

And then it, the second week you feel pretty crazy, you know, then all the familiar things. A bit of a shock the first time your hair starts to fall out. You find it very difficult to move your limbs. You, your body is a different, or my body anyhow was, didn’t all seem to be necessarily part of the same body. And the third week it was all those symptoms, really intensified, with, I was told a high degree of danger. I think I was in bed a lot then because I think it was quite, it was considered I was very, very open to infection....

 

And I think in the second or third cycle I did get a, an infection which they warned me could happen. And your, your immune system I think is pretty much gone when you’re having this kind of treatment. And so any kind of thing which would just normally be in the air can lay you low. And I think that’s one of the most dangerous aspects of it. I remember getting you know extraordinarily high temperature one night you know, and being, that’s when I was, that was the only time I think I was actually rushed to hospital, and there were sirens and ambulances and things. And I picked up a sudden infection because my body had no immunity to it.

 

Epicurus recommended that people should manage pain by imagining past scenes of pleasure. Peter dealt with his pain in this way.

Before we go on to talk about the surgery, can you just say a little bit more about how you managed the discomfort of having chemotherapy, or the painful sensations?

 

I got a good deal of advice, about how to deal with the effects of the chemotherapy, some of them from doctors and nurses and some of them from just knowledge and learning. One of the things I do is to study ancient philosophy. I’ve always been very interested in the philosophy of Epicurus, who’s a Greek philosopher who is most famed for saying that the whole problem of life can be solved by conquering our fear of death. He had a little sort of group of people who lived in Athens and who were much followed by the Romans who said, “Look if you could only deal with the fear of death, then the whole of your life would be transformed.” And he was a very, very influential early philosopher. 

 

But one of his other things that he recommended was to deal with pain; was to imagine past scenes of pleasure. And I distinctly remember being on, on the lawn in my house with, barely able to tell one leg from another, very, very disturbed perception of things around me, sort of rose bushes and fingers and thumbs. And, but being able to imagine a sort of photo box, picking out slides from past life. And I started by picking out slides of the things that I remembered that were pleasurable. You know being with my son on, on the Thames you know, being on holiday perhaps when I was, in Italy when I was younger. And then I realised that, and I was able to realise this, but it was even clearer later, intermingling with these stories of, with these pictures of things that I had seen, were pictures of scenes that I’d imagined, or scenes that I would like to have seen, and I’d spent a good amount of time on Lake Como when I was in my teens, and had been with some other crazy Italians who thought that they were ghosts of great Italian figures, ghosts of Spartacus, ghosts of Julius Caesar, ghosts of Pontius Pilate, ghosts of Pliny the Roman author who lived in, lived in Como. And the past was very vivid to these Italian friends of mine in a way that well, it isn’t to all. I mean they wanted to see them, and I would, and I never, of course I never saw the ghost of Pliny or Pontius Pilate although I was, when I was in Italy, but when I was sitting on my lawn with the effects of this chemotherapy, I was able to get together or I was able to, what came together was both a picture of what I was like, and a picture of what I wanted to see, so there were images of Pliny and of other great Romans, images of my Italian friends, images of me, all together in one, in one picture. And it took me a good deal, much later on, when I thought I’d forgotten all about this experience, when I was travelling in Italy again, thinking about writing a particular kind of Roman, Roman History book and following the journey, actually as it happens the journey, the journey that had been taken by Spartacus as he fought the Romans in 73, 71 BC. But what was coming back to me when I wrote each night about this history were, was an extraordinary amount of these memories and imaginings and pictures that had, that had come when I was dealing with the chemotherapy.

 

Peter's treatment finished 10 years ago. Since then he has seen two consultants every six months for check-ups, which include blood tests and scans.

When you go back for check-ups do you have a CT scan?

 

We have, we alternate, a CT scan sometimes, with ultrasound which is apparently these days considered in the right hands to be superior. An ultrasound that pregnant women have but you put dye in the veins and you can, with a skilled operator, you can apparently see very clearly what’s going on there, better than you can with a CAT scan, with of course no radiation. 

 

You put dye in the veins for your ultrasound?

 

Yes.

 

Oh.

 

Yes. So it’s, I think they sometimes have a CAT scan…. I think the idea is that you don’t want to have too many CAT scans, and that also this ultrasound is in many ways superior. And I certainly, one of my experiences of all this is that, which I think people don’t understand about all these scans is that, and indeed all the doctors minds, is that what you see is what you’re looking for. You know you adjust the machinery, a CAT scan is just like you adjust venetian blinds, you know, and what you see through a venetian blind depends on how you adjust the venetian blind. 

 

What you see in a CAT scan is very likely what you’re looking for, because, and patients have this idea that they’re somehow like x-rays. Or, or like a simple comic idea of an X-ray. You know, you go in, everything in your body is suddenly completely open and visible. Then you go out again, and the doctor who who’s commissioned the x-ray can see everything.

 

Of course the world isn’t, it’s not like that at all. The human mind isn’t like that. Just as people are interested in economics, see economic solutions to problems, and people who are interested in politics see political solutions to problems, and people who are interested in farming see, and it’s all about the farm. So doctors and doctors' machinery is very heavily determined by what the doctor knows about, what he’s interested in, and how you set the machinery. So if anybody ever says to me, “Well you know we’ve got three bits of machinery here, and three different doctors, all of whom you could perhaps look at to see whether or not something had gone wrong.” I would always think that was a good idea. And one doctor, one bit of machinery, not so, not so good.

 

When you go back for your check ups do you always go back to one specialist?

 

I go back to the radiologist who was part of my treatment in the first place and who has the greatest personal knowledge of exactly how my insides were last time, so he can compare them with how they are now. 

 

Do you look at the scans with him?

 

No I don’t.

 

He just reports on them to you?

 

Well he reports on them in real time because you can actually see them when he’s, it’s…

 

Yes.

 

It’s like watching TV, you’re just literally are watching, and he says, “I can see this, and I can see this, and it’s all fine.”

 

Is that once a year did you say roughly?

 

I think I go every six months for that, and then I see the man, the oncologist who applied the Streptozocin and the other chemotherapies, the man who looked after me in hospital. I see him every, every six months too. And I’m pleased to say that the knowledge of this, these tumours has seemed to have been very greatly expanded in the last decade. The treatment that treated me has been tried on other people. It has sometimes worked and has quite often not worked. I think at the moment, it is my understanding, it’s not exactly sure why that is the case….
 
 
When you go back to the oncologist, what does he do? Does he take blood tests? Or, or what?
 
Yes I have a battery of blood tests, that last you know twenty or thirty odd blood tests just, just to check all the various…

Before his diagnosis Peter knew nothing about the pancreas, and he found it very hard to find out about neuroendocrine tumours.

But we then began to learn a whole lot of aspects about an organ, the pancreas, the curious thing about the pancreas is until you have anything wrong with your pancreas you’ve really no idea that you have a pancreas. It’s a very mysterious little creature indeed, it was one of the last you know, you discover that it was one of the organs that we last learnt anything about. It was one of the most mysterious little creatures that live inside us, you know, full of islands and exuding and seeping and controlling hormones, and insulin and it’s the sort of, and its deep you know, it sort of, like a little fish swimming around in there. And it’s quite deep, and it’s a fish that stays a long way under water, and it’s quite hard to catch and not easy to do anything with. And it’s connected to your liver by its various veins, portal veins and splenic veins, and all sort of things. 

 

One of the peculiarities of this whole experience, because you suddenly, particularly if you are a journalist like me and you, you sort of feel that you ought to know things and be enquiring, once you’ve got something you can enquire about, you suddenly think, “Oh gosh what is all this? What’s this pancreas? What is this neuroendocrine tumour? What is all this?” Quite difficult to find about neuroendocrine tumours in those days. It’s only a decade ago, but it soon became clear that most doctors had very little idea even what a neuroendocrine tumour was. They, or to be perfectly fair I suppose, they’re not that common. Though I think they’ve turned out to be quite a lot more common once people start recognising them. And I didn’t know much about the pancreas either. But soon I did, and we discovered that indeed, that diagnosis, that swift diagnosis before dinner that night turned out to be, in British terms, more or less true. This was far from being a little you know pea sized couple of balls in my pancreas, it was a very, it was quite a substantial thing. 

 

Peter agreed with Epicurus, who argued that working to remove the fear of death is a very important part of living.

You talk in your book a lot about mortality and death and dying, and Epicurus saying that the most important thing is for us to try and overcome our fear of death; do you think you have overcome your fear of death through all of this? Or do you think that would be impossible?

 

Ah, what Epicurus and what the Romans discovered, which was later sort of picked up by Freud and others, is that no matter how much of a scientific materialist you are, and however much you recognise that there is no, “I” after death, that it is absolutely ashes to ashes, that there is no part of you that survives afterwards, that there is no constituent, there is nothing, you cannot possibly talk about “me” after death because there is no, there is no “me”, however much you work that out, and however strongly you are persuaded on it, and Epicurus in the days when there was a lot less science about than there is now, had a little mantra, he used to get his disciples to chant out, and there was one of the greatest, the most beautiful poems in Latin that Lucretius, De Rerum Natura, there’s a lengthy epic poem on this very theme as to, as to why there was nothing other than the material world. So you know this is Richard Dawkins two thousand years ago, but it doesn’t alter the fact that I think others, that however much you may persuade yourself that is the truth, that it’s somehow part of the human condition to ignore this truth at certain points, or for that truth to be overwhelmed by other factors. I still think that Epicurus was right. That actually that working to remove the fear of death is an extremely important part of living, of living a happy life and you know a contented, a contented life and a good life.

 

I think he knew in his heart that actually it was not, the reasons why you had to keep on at the teaching was because you can never completely remove the fear. But that the attempt to remove it and consider removing it important was a very great good in itself.

 

Peter had chemotherapy. The aim was to shrink his neuroendocrine tumour to make surgery possible.

I remember when the chemotherapy arrived from America, it was treated by the nurses a bit as though it were kind of semtex, you know, sort of a banned substance. It came in sort of yellow bags, and it was handled with care. Well so it seemed to me anyway.

 

So for each treatment you had to get it from America?

 

I think it, well yes, I think it came, I’m not quite sure how, I never asked quite, or maybe I did but I forget. I don’t know what form it came from America. But it came from America yes. I think they must have had some kind of license to use it. I don’t think it was like banned in the sense that it was, it just wasn’t, yes it wasn’t licenced for use exactly, and apparently there are quite a lot of chemotherapies like that, and chemotherapy’s been around since the first world war and some of the early ones were pretty unpleasant and not very effective and they gradually get replaced by better ones that are more, that are more precise and have fewer side effects. But that leaves behind possibly, and it certainly seemed to me, a number of drugs which have worked in the past, even if they are unpleasant which people didn’t use anymore. Anyway this was one of those. And I agreed to have this pumped into me for a few months to see what happened...

 

I was treated as an in-patient for a week. And I remember it was a cycle. It was a very strange experience to me. Obviously I’d never had chemotherapy before. I’ve since discovered this is, there are a lot, many of these cycles. I was in hospital for a week having the stuff intravenously, and being watched over quite carefully while it was being put in… I had a week in hospital. And then the rest of the time I was at home....

 

And that was for three months?

 

And that was for three months after which they said they would have a look and see if anything had happened. And I had, I mean my impression, certainly from people, at the time and since, was that the people who were doing this did not really think that anything would happen. 

 

Peter thought that the first doctor he consulted was reluctant to pass on bad news until he had found out whether or not surgery was possible.

You did say that at one time you got mixed messages from the consultants. One implied that you didn’t have anything very seriously wrong with your pancreas, and the next person said you had pancreatic cancer. Was communication a problem in other areas?

 

Well, I think that both of them were, both of them, the person who said he didn’t want to use the word cancer didn’t want to upset me, when at that stage he didn’t know,

 

Yes sure.

 

Well, he knew that it was a neuroendocrine tumour, but he didn’t know it was inoperable, I suppose at that distinct, at that point. So he said, “Well if I call it cancer, you will be very gloomy and if I just say it’s a little something in your pancreas, which may have to be removed, it won’t be.” But you know that, I’m sure he was acting with the very, very best of motives, I hold nothing against him, but it was just rather striking that, within a day later you get a different approach.

 

I’m not really blaming anybody here but it, I think that’s what patients, everybody has to be aware of, is that the range of information that you’re likely to get is very, very wide for the same condition. You know sort of one person may tell you X in order to calm you down and not panic you. And another person will tell you Y because he hasn’t got time to mess around telling you anything else.