In an ideal situation, how should a patient be told about their diagnosis?

I don’t think you can be prescriptive because every person is very different. There is also a huge discrepancy in how much a patient takes in, on any one given situation after a discussion and whilst you can speak to a patient and you know you’ve told them certain aspects of their, certain facts, they will come back later and they won’t have taken that in. Now, what we do, within our own unit, is we try and break the diagnosis with a patient, if they’re willing, with their family and the consultant specialist, who is speaking to the patient, will also, will usually speak to the patient and relatives along with one of our specialist nurses, who will then, having discussed the diagnosis, will go over any areas that they’re unclear with and we’ll usually give them the opportunity of coming back and discussing aspects to their care. Now, at their initial discussion, we often keep the discussion relatively brief because the intricacies of discussing what possible treatments and the pros and cons of those, can be beyond their ability to take it in when they’re, initially, faced with a diagnosis.

So often giving them information over a number of episodes, also supplementing that with some written information so they can write it down and ask them to come with their own questions, can develop a better understanding from the patient about why certain aspects of treatment have been suggested.

One thing I did ask him to do was, I was on a ward of about half a dozen other people, and I asked if I, if my wife and I could go with him and sit in a quiet room rather than discussing it where I knew other people would be listening in. And I found that quite helpful.

I think that was out of the ordinary and it took a minute or so to find a room you know, we had to walk around until we found somewhere, but I would encourage people not to feel they, they had to receive bad news at the convenience of the medical staff. Make sure you’re, you feel comfortable about where you receive the news and how it’s delivered to you. If you have the chance, certainly to make things private. That helped me. The thought of discussing possibly a terminal condition when other people were listening in was not welcome to me.

So, he was very good, the surgeon took us into a quiet room and explained it to us. In fact he was very careful to take time to, he actually drew a little sketch for us, he used coloured pens on a piece of paper, and he said, This is your pancreas, and this is your bile duct and he drew all these elements of my, my guts, my inside to try to explain it as fully as possible. And he explained about the stent, what that would do for me. And he also outlined the possibility of what’s called a Whipple’s operation, as I’ve already referred to.

And then we were called in for an interview with the surgeon who said, We’ll give you the results of everything, and the diagnosi. As it turned out it was a fateful date; it was our 25th Wedding anniversary. But we went to the hospital together, and saw a surgeon and there was a nurse there as well. And he said that, You’ve got cancer, and it’s pancreatic cancer. And I can confirm that it’s definite, the biopsy shows that

He was a man who wanted to explain and we were very grateful because we, neither of us had any idea, we’d not heard of pancreatic cancer before. And he drew us a picture, which was actually very useful. Because he showed how there’s a great big vein that goes through the pancreas, and that the tumour was quite, I don’t know, quite near to, reasonably substantial. And that it had been there for some while, and that lots of veins had grown all around it because it was blocking the portal vein. So he said, You know, that means I’m afraid we cannot operate. There’s no question of it because once a tumour has got this multitude of veins around it, it’s out, it can’t be operated on anymore

And it was a complete shock that to us. And both of us, we did really didn’t know what was going on at that point. And we were quite upset and quite, quite, found it very difficult.

And I then the next day had to go off and give a talk in Manchester. And there were a lot of phone calls between the gastroenterologist and myself trying to get hold of each other to find out the results of that. And it ended up with, and no one’s fault really, where he had phoned me and had left a message, I had phoned him, and then eventually we spoke to each other while I was on the train coming back from Manchester where he was trying to tell me what was wrong. And I didn’t really want to wait any longer, because we’d been trying to get hold of each other. But the trouble with that train is that it keeps going through tunnels. So every couple of minutes, while he was trying to say, Yes, I think you’ve got pancreatic t-, cance he would go, Yes, I think you’ve got pancreatic. and then there’d be c-, a cut-off. And then I’d ring him back or he’d ring me back and we did it for about six or seven times.

And somehow being in an open carriage with a mobile phone, I mean it’s absolutely what he and I would have said is the worst way to give bad news. But there was no, somehow I c-, I could have waited till the evening, but I didn’t want to wait. And I also knew from the tone of the voice of his message that it was really bad news. And I think I knew anyway and I’d just been just keeping it at bay. And he said then there was, it was, it seemed to be definitely a small tumour, although they couldn’t identify absolutely, in the head of the pancreas, and that really the only thing I had to have was a, an operation, the same operation I’ve talked about, a Whipples. But then I actually had a proper conversation with him when I got home. And he arranged for me to see the surgeon, who it turns out does a couple of these operations a week, because it’s obviously part of the regional centre. And I was s-, I still, I don’t think I believed it really, although I knew it was true. It was that sort of disbelief. it’s rather like with a bereavement, you can’t believe someone’s died. I just couldn’t believe that twelve years after breast cancer, here I was with a pancreatic cancer.

Yes, I had another ultrasound and they didn’t tell me anything about it but immediately after that then I had the CT scan. And then went back to the ward and at about five o’ clock that night a young doctor came in and told me I’d got pancreatic cancer, just like that, no one there, I was absolutely stunned and shocked and I can’t really explain what a, you know, traumatic experience it was. And shortly afterwards my neighbour’s daughter came to visit and I couldn’t tell her.

Of course not.

She’s a young girl and I didn’t want to tell her, I didn’t want her to know before my immediate family but anyway they came quite quickly afterwards and.

How terrible.

But, you know, of course they were upset but.

Did he just give you this news and then disappear?

Yes quite quickly. He was ever so, he was a nice, but very young.

He was, you know, it was just really after he’d gone I thought Oh here I am, one minute I’m not too good but the next minut I don’t think I’d ever heard of pancreatic cancer before. Anyway what happened nextoh my family came and, the youngest son’s very emotional and I knew that he was going to be the one, my daughter is as well but he’s the worst, and I looked at him and his eyes filled up with tears and I said Look I don’t like it but we’ve got to get through this togethe and from then on he’s been wonderful.

The next stage, I saw, I was moved then from the medical assessment unit to a ward and my daughter had spoken to a consultant and, a young one, and he said that another consultant would be coming to discuss the situation with us so we met him in a little private room on the ward and that was dire. I can’t tell you how, my daughter calls him Dr Death because he, he just said Well you’ve got pancreatic cancer its probably the most common sort and that’s the most difficult to cure and to trea he said There’s going to be a meeting on Thursday, the multi disciplinary meeting and, you know, they will have the same diagnosis as me, I’m sure 90% will be the sam. Well it was awful really, we had really a nasty day then, you know, thinking about it.

Did he not say that there might be something they could do at that stage?

He said they would probably be able to give me chemo but it is difficult to treat.

Anyway we got through the next two days and they all turned up for the result of the multi disciplinary meeting but no one showed up so they came again the next day and this time a very nice young doctor came.

And he said, We had the meeting yesterday and we’ve decided you’re a good candidate for the operatio. I couldn’t believe it and I was a bit, I have readjusted my mind to not having it, I thought Oh dear do I want this operatio but of course I did it was just the initial shock.

And then I was told I needed to go to a specialist hospital for further care. But they wouldn’t tell me why. They never really gave me an indication of why I needed to go there. Just I needed to go

I got to the specialist hospital. I was met by a nurse who introduced herself, and told me that I was booked in for surgery, which was the first we’d ever, or it had ever been talked about, any surgery. I didn’t know about any surgery at all. And then I was taken to the ward, and on the ward when we arrived, we were sat in the sort of reception area to the ward, and there were lots of leaflets on, on cancer, different cancers, different, I can remember there was prostate, and they were all gastric sort of cancers.

And that again was a big, big shock, a realisation that really maybe, what I’d been told about non-specifically by a doctor, what seemed many, a long time ago, I suppose in reality was a number of weeks, what was more and more likely to be, what the cause was.

So what did they say was the matter when you were in hospital, when you got to hospital?

They just found a mass.

That’s what they said?

Yes. Well they could see this blockage, but didn’t know properly what it was.

So I had an MRI I think it was the following week.

And I had to wait for the results for them, and I was told I would get the results at another hospital, which was a specialist hospital. So 22nd December 2008, I went along just expecting to be told, Oh, it’s a lump. We’ll just cut it out But I didn’t realise it was cancer until I was actually introduced to a MacMillan nurse.

I wasn’t told it was cancer.

My husband even went to work; we couldn’t afford to have him off work. You know, me, really. Especially with it being near Christmas. My daughter was with me, she’d just broken up from school, you know, my youngest daughter. And my brother-law because he was off with disability anyway. So he agreed to take me with it being so far away. And it just sort of went over my head and I thought, Oh I’ve got cancer. it’s a cancerous lump Because you don’t get introduced to a Macmillan nurse unless you’ve got cancer. But the doctor didn’t actually say, You’ve got cancer

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 thi 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.

She was diagnosed as having pancreatic cancer, which is not, no-one wants to get any cancer, but pancreatic cancer is classically not one that you particularly want to get. And the prognosis was pretty bleak and they said they thought she probably had about three months to live.

And then in the subsequent days they slightly changed their mind, they revised that and thought that they could do this operation to remove the pancreas, something called a Whipple operation. And they said that there was a, I can’t remember what the percentage chance was – it’s exactly the sort of thing you need to know and I can’t remember – of that being successful in terms of a total cure, and then there was a certain other percentage which was successful for, you know, to give her another few years.

What did the consultant say then?

She said that, you know, you go into a little clinical room, off a corridor, and sit down and she took a nurse with her. She in fact took two nurses with her this time, you know so by this stage I, I know that if someone takes a nurse with them it’s serious.

And she said very matter of factly she said, Well you know along the lines of, it is cancer and it is malignant, and she said, it’s in your pancreas, and we can’t operat. I think fairly early on she said, We can’t remove it And then you know, I then said, Well, okay so you can’t remove it, but and she said, Well we can give you chemotherapy to contain it So I then said, Okay well, so you can contain it then indefinitely Because it, you know, you just, I think you go into shock and you clutch at straws, and she said, There is only so long that you can contain it for you know, it will develop but we, but we can’t get rid of it

And I think I then was carrying on with, Okay, well we’ll contain it then So she, I think she knew then that the message wasn’t getting through. But the way the, then she just, she then just said, I think it was along the lines of you know, You’re looking at you know another two years, and basically you need she said, Basically you need to make provision for your children now

So that was quite shocking?

And that, it was that phrase, just stuck with me all, you know even, even now I just think, it was sort of too, she wanted, she was using a shock factor to make the point. And I was, I’m very mixed, I’m very mixed because you know she would’ve known that we’re, that as soon as she told us the news you go into shock. I mean you go into a deep shock where you’re not really thinking straight. And maybe they’re trained to, you know maybe, I don’t know, but then you, maybe they use shock to sort of shock you out of it. You know the equivalent of slapping someone’s face. Where she you know, and she knew that mentioning the children would make it real.

How did your wife react to that?

Ah well it was, I mean she, she wailed. I mean she, it was, it was slightly surreal, as you can imagine. it’s just

Awful.

She, Karen sort of, Karen I suppose had suspected that this was a possibility. She must have done. So when she heard the words that she was, I suppose you know, the back of her mind was dreading. She just was wailing and screaming, No, no, no. don’t say that. That’s not what I want to hear And sort of beating my, my legs in just anguish.

I’m so sorry.

Its, you know it’s something that you never recover from because it’s just very intense. And I just sort of went into shock and I just remember sort of, all I could hear in my, in my own head was the word, No I was just shaking my head saying, No, no I didn’t, you know I didn’t know what I meant by that. Whether it was, No it can’t be true or, No don’t tell me, or what but I sort of shut down I think.