There are two types of pancreatitis. There is acute pancreatitis and chronic pancreatitis and they present in different ways. Acute pancreatitis is a sudden onset illness, where the patients classically have very severe pain in the epigastrium, just underneath the breast bone, associated often with vomiting. And it can be an extremely severe pain. it’s classically one of the most severe pains you can have. The patient is often required to come to hospital and over a period of three to four days, in about eighty per cent of patients, they will settle relatively quickly. In those patients, the key to management is about preventing a further attack.

That’s usually looking for gall stones or avoiding other causes. Now, chronic pancreatitis is due to a scarring in the pancreas and it’s often due to recurrent mild attacks of pancreatitis that, over a period of years, result in the inflammation and scarring, which in those patients, they present with pain, episodes, which are not as severe, often requiring hospitalisation. But then they run into problems when the pancreas isn’t working so well.

So the digestive juices of the pancreas tend to reduce in quantity and they [patients] develop problems with their digestion, or sugar control can go off so they [patients] develop diabetes. They get weight loss and a variety of other symptoms. Now, the diagnosis is, again, often first of all thought to be an ulcer.

And it is only through investigation that it turns out to be chronic pancreatitis in those patients.

And the causes of pancreatitis and pancreatic cancer are quite unknown
aren’t they?

Well, the causes of pancreatitis are, by far the most common cause is simple gall stones, where a gall stone falls out of the gall bladder, and blocks the pancreas tubes.

And results in acute inflammation. The second commonest cause is alcohol where often following a binge the patient can develop some inflammation within the pancreas and there are a number of other causes. Now, pancreatic cancer is not caused by gall stones or alcohol. The only real major contributory factor is smoking. There are a number of other minor contributory factors but the vast majority of patients who present with pancreatic pancreatic cancer, there isn’t an obvious cause as to why it has developed in that patient.

I was suffering from some stomach pains, some severe abdominal pains at the beginning of 2010 and I went to see my local GP and to all intents and purposes we were convinced it was a duodenal ulcer from the symptoms.

Did you have any other symptoms apart from the pain?

I had some stomach pains, when I ate, I used to get a reaction about half an hour after I ate, which again everyone thought was the food going down irritating the ulcer. And that went on for a little while before I got these severe pains which resulted in me going to the doctor. So there probably was time, about a couple of months where kind of, if I’d been more aware I could have gone to the doctor earlier.

Did you notice any change in your bowels, your stools?

No, nothing at all.

Nothing.

And I used to like a drink quite a lot, and the only thing I found was that giving up alcohol kind of eased the symptoms. Which is what I did. So I just thought it was alcohol irritating an ulcer.

Well, it’s hard to say when it all started. But in the past I had pains in my chest and trouble sleeping and my food seemed to be lodged in my, just in my stomach and above and it backed up into my throat. So I was then getting treated for hiatus hernia. I was taking tablets for that, to help it. I was also having trouble with haemorrhoids, and that’s where I first was diagnosed with that and I was getting treated for that. I had the feeling, in just early 2009 I had pains in my chest, very very bloated feeling and I was very uncomfortable. It was a Saturday and it was late February. My wife phoned the 24-hour doctor and they sent the paramedics to the house. And the paramedics thought that I was having a heart attack, because it was all round my chest area.

Did your stools look different?

They did. They were actually, it was, a lot of the time it was diarrhoea and light coloured. And one of the symptoms that I was told if you’ve got something wrong with the pancreas or liver was jaundice. But I didn’t have jaundice at all. I’ve never had that. But just the bloatedness and the feeling of burning sensation in the chest area and the, not getting the food moving was, was all I had all the time. And I had to watch my diet.

I felt that I’d pulled a muscle in the left hand side of my body, and I’d been doing quite a lot of gardening and I’d been lifting a compost heap and so the pain in the side of my body seemed sort of uncomfortable. And I went to my GP and she said, Yes, I think you’ve pulled a muscl. She examined me and said, Take some paracetamo. And that was it.

Where was the pain exactly?

In the left hand side of my rib really, just under my rib.

And you know, the pain seemed to go away. In the summer the pain returned and I’d been watering the garden with heavy watering cans and once again went to my GP because the pain got worse, particularly at night when I was lying down. And she said, Well, you know, you’ve obviously been over-doing things a little bi and she examined me very carefully and said, Well, you know, I think you have pulled a muscle and just take some paracetamol and, you know, that should do the tric. Well, it didn’t and the pain got worse. So we were away in the summer, and I returned in the September to see her and said, you know, This pain is not going awa.

It wasn’t a sharp pain, it was just an uncomfortable pain in my side and was particularly troublesome when I went to bed at night.

I was diagnosed in August 2007 with pancreatic cancer. And up until about a month before I thought I was fit and well. I got the first symptoms, which were backache and then abdominal pain which got increasingly worse, pain when eating. And I continually went to the GP, was diagnosed initially with IBS, irritable bowel syndrome or dyspepsia and given all sorts of painkillers, drugs etc, none of which worked. Eventually I had an after-hours doctor out, who came the closest by suggesting pancreatitis, who gave me morphine for the, as the pain was so severe by then.

I was first aware of, of my symptoms through the backache. And it was like, I couldn’t get comfortable in a chair, and it was almost as if someone had strapped a tennis ball to the middle of my back. And, and it was the middle of my back, close to my spine. So it wasn’t in the lumbar region where you get backache if you’ve strained whilst lifting something, and it wasn’t up in the shoulder. It was certainly in the middle and it was close to the spinal area. And I think it was probably due to the tumour itself pressing on the spinal nerves.

Ok, really just before last Christmas that I was feeling sort of generally unwell and nothing really specific, very peculiar little symptoms such as I’d gone off my yoghurt. I had yoghurt every day for years but just didn’t fancy eating it any more. If I did eat it, it made me feel sick. And then one day I had a really excruciating pain in my left shoulder, which I couldn’t think of anything that well obviously it wasn’t in the shoulder. You could, I could move the shoulder. I could prod the shoulder about. It didn’t make the pain any worse but it was t was really really bad pain.

So after a little while, about only a few days, I went to the GP. She said that’s very probably referred pain from the diaphragm. And she gave me some antacid type tablets, which did do the job, made the pain go away. But I also reported this really extraordinary bloated feeling after, especially after eating a meal. And she couldn’t tie that in with any other symptom that might be or problem that might be to do with the referred pain. So she tentatively suggested IBS, irritable bowel syndrome, which was a fair enough diagnosis but not one I was particularly happy with.

So she offered me a referral to my local hospital. And I always take referrals if I’m offered them, so I duly went for that appointment and had a blood test, which, obviously it was testing for a lot of different things, coeliac disease among them, a very comprehensive blood test. And also 20 minutes of being poked and prodded around at the end of which the consultant said, Well you have IB. And I still wasn’t happy with that diagnosis, but it seemed to be definitive. So I went away, still had these I went away with a recommendation to follow a low fibre diet, which I tried to do, which was pretty difficult because they hadn’t given me any hadn’t given me a definition of what a low fibre diet was. So it was rather difficult to follow a low fibre diet if you’re not told what one is, but I did try.

In the meantime I was not feeling any better and was getting really bad lower back pains. But that’s not massively unusual, I have a prolapsed disc, so lower back pain is something I’m quite used to. This was different to the disc pain but I wasn’t overly concerned. It was quite, quite a bad pain.

And what are the symptoms of pancreatic cancer?

One of the challenges is that the symptoms, initially, can be very vague and patients often do not present with classical symptoms until they develop jaundice. Now, by far the commonest presenting symptom is jaundice. That’s where the skin goes a yellow colour. The whites of the eyes go a yellow colour and that’s due to a blockage of bile. Now, there are a number of other symptoms, particularly epigastric pain, that is pain just underneath the breast bone, discomfort on eating, being off your food, weight loss and general indigestion. And these, obviously, can be similar symptoms that you can get with ulcers or with other causes of indigestion and, usually, people first of all think of symptoms of indigestion rather than it being pancreatic cancer.

And one of the challenges is always to have a very high index of suspicion that it could be a pancreatic cancer and look for it rather than waiting for the inevitable jaundice to appear. Now, about one third of pancreatic cancers do not affect the head of the gland. The gland of the pancreas is in two pieces. they’re in two areas. There’s the head of the gland and then a tail, a bit like a tadpole and two thirds of the gland is within the head and a third is in the tail. Similarly, you will get about a quarter to a third of pancreatic cancers that affect the body and tail that are away from the tubes from the liver and, therefore, they do not present with the classical jaundice. They often present with just epigastric pain within the epigastric area, weight loss, patients feeling generally unwell, and jaundice isn’t a feature and these are particularly, the really difficult types of patients to pick up.

So it’s quite complicated.

I’m trying to remember but it was in two thousand and, the year two thousand actually, early two thousand, that my Mother, who’d never been particularly unhealthy in any way, went pretty yellow. Jaundice was the first alarm bell and she went to the doctor and he didn’t like the look of it.

Did you remember her talking about any other symptoms apart from the jaundice?

Yes, funnily enough, she used to get a thing she called the rats’, she said it was like rats gnawing at her intestine.

And she felt like, she used to think it was when she got hungry and she used to eat, but looking back on it I suspect that was the pre-cursor.

She didn’t talk about any other pain or bowel problems?

Well she didn’t talk to me about bowel problems.

About three months ago I suddenly noticed that my stools were different from how they’d been before and I was going four or five times a day, and I was having to get up at five or six in the morning, which was a complete change for me. And also that they were slightly more fatty than they were, and flushing them away was more difficult, especially when I was at work, where somehow the lavatories didn’t flush very well and I was having to flush them four or five times to get rid of them. So I knew something was wrong but I wasn’t sure what. And having had breast cancer twelve years ago I thought the most likely thing was that I might have a bowel cancer or something like that, which I knew could be associated. And I didn’t feel that worried about it but I felt I ought to do something about it. So I went to see my GP.

How soon did you go to see her?

I went to see her approx-, initially I thought, Gosh, I’ve just got a bit of diarrhoe so I went about a month later, when it hadn’t settled down at all and when I somehow found time to do it. But I must have been worried enough to do that, because I rarely go and see the GP.

There’s one other thing you mentioned, about the taste in your mouth?

Oh, yes, now the only other thing, at the time, looking back on it, and in fact at the time I’d noticed that I had started to have a slightly funny metallic taste in my mouth which was, I couldn’t get rid of when I cleaned my teeth, which was very different from what I normally had. And it didn’t matter what I ate I had this funny taste and it did coincide with the, my bowels changing. And interestingly, since I’ve had the operation that has gone.

I noticed something odd happening about five months before I actually went to the GP. And it happened about three times that I had, I was getting an increasing amount of sort of wind almost and burping a lot. That was the other thing that was very odd. And my husband said, That’s very odd And then I’d notice a few days later, sometimes I, each, each time I felt a little bit nauseous for a couple of days and then I’d pass a very abnormal coloured stool, as if I’d got a gallstone or something, if anybody else recognises those symptoms. I wasn’t jaundiced, but I just had this very funny stool, which was almost putty coloured. And I thought, Well, that is very odd Then months, and I hadn’t noticed at that time that actually I had been feeling a little bit nauseous before. But the next time it happened when I was a bit nauseous and I think, Well, I wonder if the same thing will happen again And it did. But that was very near Christmas and I thought, Well, in my experience I know it’s no good going to one’s GP round about Christmas. I’ll go straight after Christmas and then things will be looked into properly

How it came about was I was getting a lot of pains in my tummy. I was feeling generally very unwell and I kept saying to my GP that I didn’t feel well and that I was getting all these pains in my tummy and that and he wasn’t really taking a lot of notice. He wasn’t taking it on board at all. He just kept nodding his head and nothing much was happening. And I got really, I got worse and worse and then my husband phoned the health centre for an appointment and this particular doctor wasn’t available. So we went with another one that we’d not been to before. He took a different viewpoint on it entirely and he was very worried about me. He was looking at my condition and he examined me thoroughly and he said, Something is not right here and I’m going to send you off for some tests

Well, while these tests were going on, I suddenly took a turn for the worse. I’d been vomiting constantly as well was the other thing. I couldn’t keep anything down. I’d been vomiting literally, you know, constantly throughout the day. Towards the end, you know, just nothing stayed down whatsoever. And finally, my husband was so worried about me, I’d had an appointment made with my GP and I was just too ill to get out of bed to make it. I was hurting. I felt sick. I, you know, I just didn’t think I could get there. So he went for me and he said to the doctor, You’ve got to do something about her because she’s in a terrible state And he said, I’m going to send her to hospital And he phoned an ambulance and by the time the ambulance arrived I’d started to turn bright yellow. My face was going more and more yellow as between our house and the journey to the hospital. And when we got there the doctor said I was one of the most yellow looking jaundiced people they’d ever seen and they immediately assumed I had something wrong with my liver because of it.

I can go back to ’09, roughly November, no a month before, September, October. I was starting to be sick once or twice a week. After that it got daily. Every time I seemed to go to the top of the stairs I was sick. Not being one for going very often to the doctors I thought well I’d better go and see what’s happening. And I went to the doctors and told him I’d lost a stone and a half in weight, and was being sick daily. He said he would make an appointment for me, and the appointment comes, says 13 weeks, and I went back the following day and said, I’ll be dead before 13 weeks I said, Because I’m, I’m being so sick

Did you have any pain?

No.

No?

Er no pain, no, just feeling sick of an evening. You know, I couldn’t understand why. I think it must have been my last meal was always my main meal, and I think that got to here, and by the time I went to bed, which would be half past ten, eleven o’clock, I’d probably had another cup of tea, and a snack, and by the time I walked the stairs it, that was it, I was, I don’t know whether the stairs triggered it off, I don’t know. But I just made the toilet bowl every time I got to the top of the stairs.

What happened last July, I probably think it was middle of the July, and I was beginning to feel more tired. And I noticed that, one day that I am really feeling tired by evening. Then I thought to keep my evening happy and free I better start resting during the day, which I never did before. So I started to rest during the day. And when I was resting I wasn’t getting very comfortable quickly like you normally would when you lie down. I wasn’t getting comfortable, with my stomach comfortable. So what I did, I started to feel the, where I was feeling uncomfortable, I started to feel it. And I felt a lot of thumping going on, pulsation was going on. Then I had to search for it, where it is exactly and how it is doing. And once I felt it, it was a lot of h-, a lot of going on there like, it was like as the clock going tick, tick, tick, tick, tick. This is how it was, and almost I could hear it and feel it as well. So I just ignored it, Probably I’m tired For that moment I ignored it. I thought, I’m feeling tired and I’m not resting properly, or more perhaps my blood pressure gone up or whatever All sorts of reasons I gave myself and I put my mind at rest that, It will go away Two weeks went by. I started to check it regularly when I lie down and it would not budge. It was still the same thing. It took me a long while to get peaceful with my body. And that pulsation coming down. It took me a long long time, like half an hour probably, before I could feel normal with myself. So after two weeks I decided, No, I cannot ignore it. I need to do something One thing I’m getting tired. The other thing is a lot of pulsation going. it’s not in my heart, but under my left rib. So I went to my GP and she had, she says, Get on the couc and she checked my stomach. And she put her hand where I did as well and she, she felt the same as well. She said, You’re quite right. There’s a lot of pulsation going on And then she asked me a couple of questions while I was lying down. She says, How do you feel all this stuff. I told her that I’m getting tired more. And nothing else I felt. I didn’t feel sick or anything otherwise. I carried on doing things normal as did. And she says, I’m afraid I’ll have to send you to hospital

So the only symptoms you’d had so far was the bleeding?

Was bleeding through the back passage, yeah.

No pain?

No pain, nothing just this bleeding through the back passage.

Had you had any stool, problems with your bowels, your stools?

Yes, it was loose, bit loose and bleeding. It could happen at any time of the day but.

As I said, they weren’t overly concerned about it. I just thought it would be something that would pass but, obviously, time between the July to the November, I don’t know, I thought I was fooling myself because I wasn’t a person who wanted to go to the doctor’s for something that I thought was trivial.

So you started to have the problem in July?

In July, yeah.

And you didn’t actually go to the GP?

GP until the around the, I would say the October.

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.

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