John - Interview 21

Age at interview: 69

Age at diagnosis: 53

Brief Outline: John's first wife, Ann, became jaundiced in 1997 and had various investigations and surgery but biopsies were inconclusive. She developed secondaries in her liver 9 months later and was told it was terminal pancreatic cancer. She died 3 months later.

Background: John is a retired pensions manager. He is married for the second time and has 2 adult children. Ethnic background: White English.

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John’s first wife Ann became jaundiced in December 1997 shortly after holidaying in Egypt. The doctor immediately suspected an infection and sent Ann to be isolated in hospital. After a couple of days the doctors decided she must have gall stones. They did various endoscopic examinations, scans and biopsies and attempted to insert a number of stents with little success. The biopsy results were inconclusive and an operation was proposed, but when this was delayed John arranged for it to be done more quickly by using his private health insurance. Ann had major surgery but the professionals didn’t seem able to tell them exactly what the problem was or how serious it was. After discharge she had problems with one of her drains and had to have it replaced.

 

Ann was put on a variety of medications, primarily painkillers, but vomited increasingly so the doses were reduced. She was readmitted on various occasions, once to replace her stent, but that was unsuccessful. For a while Ann managed to get back to doing things including some work. In September a scan showed lesions on Ann’s liver and the word ‘cancer’ was used for the first time, and they were told that nothing further could be done. She was passed to another specialist who successfully replaced her original plastic stent with a metal one, which alleviated her problems for a few weeks. They were then put in touch with the local Ellenor nurses, funded by charity, that provided palliative care and support in the home. John is very grateful for the support they gave and regrets that they hadn’t contacted them earlier.

 

Ann was by this time on morphine, and one day developed pain in her chest and arms and was admitted to hospital as an emergency. The professionals told John that Ann would die, so he called his children to be there, but the following morning Ann felt better and was discharged again. For the next two weeks she pottered about at home and was visited daily by the palliative care nurses. One night Ann developed a severe pain, took some morphine and went to bed. She slipped into a coma and died the following day.

 

After John (Interview 21) discovered that his wife had liver metastases as a result of cancer he waited 48 hours before he told their grown-up children about it.

Given that you didn’t know for such a long time exactly what the problem was, how did you go about telling other people, for instance your son and daughter and other family members, about what was wrong with Ann?

 

I think, with great, besides with great difficulty, I think we kept, or I kept it sort of bottled up inside me for forty-eight hours or so before I talked to both my children. They both knew it was very serious because, you know, they had, they had been around and they, they had known the frequency with which we’d been into hospital and been for this and been for that. But again that was in September and I think I just, just talked to the pair of them, I think, I think with my son I had to do it on the telephone, but with my daughter, she lives locally so, you know, I could talk to my daughter. But my daughter is the more resilient one anyway so it was easy to talk to my daughter, less so with the son, because he was closer to his mum. And, you know, the fact that he was, he was up north didn’t, didn’t exactly make life, make life easy, because getting down here was always a bit of a pain.

 

John's wife had abdominal pain, headaches, dizziness and shortness of breath. One day she also had severe chest pains and pain in both arms.

So we ended up in a London hospital. And Ann was in hospital in London for two or three days and the Professor changed the stent, and I met him after he had carried out the surgery and he was like a cat with two tails, he was so delighted he had managed to do it. That reduced a lot of the problems but unfortunately it wasn’t long-lasting.

 

About a month or so later Ann started to get severe abdominal pain, and poor body temperature, dizziness, headaches, all manner of other problems and she’d then again stopped, stopped working, she couldn’t, she couldn’t cope any more on bits and pieces like that. We then through sort of October went through a, a whole series of ultra scans, x-rays, blood tests, seen by various people. They talked in terms that she may have also now contracted pancreatitis, that ultimately proved not to be the case but it was just something else that was sort of added to it. 

 

Over the next, next month or so Ann was then put on to morphine and she started to have to have more and more morphine to kill the pain, and that really was the only medication she was then on. The Ellenor nurses used to come in from time to time, on a, on a couple of occasions when Ann didn’t seem to be too well at all they even stayed the night, and that’s an enormous support that we got from them, very good indeed.

 

As we, as we moved into November unfortunately Ann deteriorated. If we were, we weren’t really able to go out anywhere, I did manage to take her shopping a few times, but she was very short of breath and it was a, it was an enormous effort. And eventually we even, even accepted that she would have to be in a wheelchair, so we, she had a wheelchair and we went to, we went shopping, and that did help. And I think it’s important that you’ve got to still maintain the relationship with the rest of the world. You can’t just sit at home and deteriorate, I think you need to see what is happening out there. 

 

And we then, we then had a, had another problem in sort of mid-November in that Ann had severe chest pains and both arms, I phoned the local GP, and his recommendation was that we phone 999. That I did, and she was again taken to the local hospital. They diagnosed that she’d got a, probably a loss of blood from her intestine which was creating shock and all manner of other problems. The surgeons reviewed the notes, because they managed to lay their hands on them all very quickly, they filled her up with liquids, she was completely disorientated, [coughs], and eventually they tucked her up in bed, and a surgeon I hadn’t seen before came and talked to me, and he explained to me that we were very close to the end. And we agreed and he put a note on the notes, ‘no resuscitation’. 

 

That was fine and Ann stayed in hospital that night, by eight o’clock in the morning she’s up and about again. So [laughs] we just get completely lost as to what’s happening and what’s not happening. The Ellenor nurses, I don’t know how they did it, but they turned up at about eight o’clock on the morning, so they had got a, they had obviously got a system of knowing who the, who had been admitted overnight. They organised bits and pieces and within, oh, twenty-four hours of having been taken into hospital by ambulance and the surgeon telling me that we wouldn’t go through resuscitation Ann’s back home again, which is quite a shock, because I had both the, both the children with me by then, they had both travelled to get, to get to us. And although Ann wasn’t feeling very well, she was still a little bit disorientated, she was back home and, and feeling better, I think the morphine had kicked in by then and, you know, that was it. The local GP called in and everything seemed to be going well and that was the end of November. 

When John's wife needed to change her drugs because of side effects her GP was not sure how to modify the dose because he had too little information from her surgeon.

Going back to the earlier months when she had all these various other drugs and wasn’t tolerant to them, I think it might have been helpful if there had been a little bit better liaison between the, the surgeon and the GP at that stage. But I think you will have that as a problem at any time when you’ve been in hospital and you come out, and what you are taking isn’t working or is too strong or not strong enough, you then start to rely on somebody else to modify it, and they haven’t been, been the instigator of that particular drug for a particular reason, and although the note systems are, I think are very good and everybody, everybody was very co-operative, I think when you talk to a GP at three o’clock in the afternoon and you’re looking for a change of medication and for somebody to sort it out, he’s got to make the best decision he can with the limited knowledge he’s got, because he can’t just pick the phone up and say to the surgeon, “Why have you done this? What have you done that?” He’s not going to find him. It isn’t that simple. 

John felt that the medical staff were trying to be 'too polite' to save their feelings. He would have preferred them to be honest.

…..and this seemed to be the theme that came time and again with nurses and everybody else, everybody seemed to be in great difficulty in explaining to you what the problem was and how desperately bad the situation was. It’s not easy for anybody in the medical profession, I know, but I did feel for the whole year that Ann was ill that everybody was fighting shy of telling us anything. Everybody was trying to be too polite. Everybody was trying to save our feelings. I don’t quite know what our feelings would have been if we had been told on day one, but even the surgeon we talked to and the surgeon who had carried out this, these major operations on Ann, he found it very, very difficult to say that, how bad the situation was. I was having to interpret his, his demeanour and his hesitation in order to gather that it really was very serious. 

 

So what do you think about the health professionals who looked after Ann?

 

I think they, I have got no problem with any of them except that I don’t think any of them have been able easily to tell somebody that they have got a terminal illness. And I can understand that, it’s not a job I would ever want to do, but I think right from the nurses, right the way through to the, to the top surgeons, to actually be able to sit somebody down and tell them, “I’m sorry we’re going to do everything for you but it’s not going to, it will end and this is what we think, you know, two months, three months, six months.” I don’t envy them that task and I don’t know how I would do it if I had to do it, but I think somewhere along the line we would have been better off being told earlier on that we had a terminal illness which we weren’t going to get out of. 

 

On the other hand of course I mentioned earlier on that we were looking forward and still, still aimed to go on this holiday at the end of ninety-eight. If somebody had told us earlier on that we weren’t, we weren’t going to be able to go I think that would have lowered our expectations, it would have made life far more unpleasant and I don’t think we would have been as happy. So there’s a balance somewhere in here and I don’t know where it is. Perhaps they have to deal with every case as it comes. Perhaps somebody else would have got an entirely different experience of the professionals in being told that they have a fatal disease of some kind or another. Perhaps they treated us the right way, I don’t know.

 

John's wife, Ann, was rushed into hospital, and the surgeon thought she might die, but the next day she recovered and she could go home again.

We then had a, had another problem in sort of mid-November in that Ann had severe chest pains and both arms, I phoned the local GP, and his recommendation was that we phone 999. That I did, and she was again taken to the local hospital, and they diagnosed that she’d got probably a loss of blood from her intestine which was creating shock and all manner of other problems. Surgeons reviewed the notes, because they managed to lay their hands on them all very quickly, and they filled her up with liquids, she was completely disorientated, and eventually they tucked her up in bed and a surgeon I hadn’t seen before came and talked to me, and he explained to me that we were very close to the end. And we agreed and he put a note on the notes, ‘no resuscitation’. 

 

That was fine and Ann stayed in hospital that night, by eight o’clock in the morning she’s up and about again. So [laughs] we just get completely lost as to what’s happening and what’s not happening. The Ellenor nurses, I don’t know how they did it, but they turned up at about eight o’clock on the morning, so they had got a, they had obviously got a system of knowing who the, who had been admitted overnight. They organised bits and pieces and within, oh, 24 hours of having been taken into hospital by ambulance and the surgeon telling me that we wouldn’t go through resuscitation Ann’s back home again, which is quite a shock, because I had got all the, I had got both the, both the children with me by then, they had both travelled to get, to get to us. And although Ann wasn’t feeling very well, she was still a little bit disorientated, she was back home and, and feeling better. I think the morphine had kicked in by then and, you know, that was it. The local GP called in and everything seemed to be going well and that was the end of November. 

 

John's wife, Ann, died peacefully at home. The nurses gave her some morphine and she went into a coma.

On the thirteenth we did go out and we went shopping again, and then in the afternoon of the thirteenth Ann said that she was in severe pain, took some more morphine and went to bed, and that was in the afternoon. I phoned the Ellenor nurses and a couple of them turned up. They gave her some more painkilling injections, and we talked and they in, they did bits and pieces and made her comfortable, and they disappeared and Ann didn’t get up in the night, she was very, very still, and the Ellenor nurses, and a doctor from the Ellenor organisation turned up at about nine o’clock, nine, half past nine the following morning, and basically Ann didn’t wake up on, on that, on that fourteenth of December, she died at about twelve-thirty…. 

 

So do you feel it was a good death?

 

It was an easy death because basically she, she’d got enough morphine and she went into a coma. She wasn’t in any pain at that time. It was very simple, she just literally just stopped breathing and that was it. There were no, there were no dramatics, she just, just hadn’t ever woken up that morning ….. it was just very simple.

 

The palliative care nurses encouraged Ann to take enough liquid morphine to prevent pain and gave John and her a lot of moral support.

So what was the, tell me a bit more about the care she had at the end of her life from the Ellenor nurses and people?

 

Well the Ellenor nurses to a large extent it’s, it’s almost just them being there, they would come and they would talk to Ann, they would give us a lot of moral support and just sit and chat, because Ann at that stage was almost only on morphine, just liquid morphine which she could drink, and they would talk to her about how much she should have and that they would encourage her actually, when she was in pain to actually take a little bit more, because Ann was quite against taking too much, she was always in a, ‘perhaps I’ll be worse tomorrow so I really ought to save the dose for tomorrow’. Whereas the Ellenor nurses, who with their experience, quite clearly said, “Well we think you just have a little drop more and that will ease it and you will get through the night better.”