What about if the cancer comes back? Could you summarise what palliative care, the care that might be offered to help the symptoms?

So, when patients develop recurrence of pancreatic cancer, and they usually are referred to oncology doctors, we offer in the first instance chemotherapy, to try and improve survival, but we’re very aware that patients may have symptoms associated with that cancer, so part of our job is actually to concentrate on symptom control.

Now chemotherapy, gemcitabine has been shown in itself to be very good at helping to dampen down symptomatology associated with advanced disease. But there are lots of other things that could be done, and patients can run into problems with pain, with jaundice, and with ascites. They tend to lose a lot of weight, and they tend to get very low mood, and all these kind of things mean that quite often we need more help than just oncology doctors. So quite often we will involve people like palliative care doctors and our nutritionists, and other experts, pain [relief] doctors to try and help deal with the symptoms.

What would be the most worrying symptoms quite near the end of life? I imagine pain is something that you have to control.

I think patients fear pain the most. We are constantly asked questions about that. Some cancers can be more problematic with pain control, and pancreatic cancer can be because the position of the pancreas is right in front of a large nerve plexus. And infiltration of that nerve plexus by the cancer can cause pain. But again, we have very specialist teams, both acute pain [relief] teams involving anaesthetists in the hospitals, and palliative care teams in the community, with all sorts of different ways of trying to deal with that particular problem.

Are there any other symptoms that you should mention?

Patients can run into problems with jaundice, if they develop obstruction to the bile duct. And ascites, so accumulation of fluid in the abdomen can also be problematic.

Would you sometimes drain that?

Yes, so again, drainage of ascites is a routine procedure from our perspective and we are now trying to find ways of being able to do that more in the community to avoid patients having to come into hospital.

Now, as a general principle, simple treatments are better than more complex ones and so most people would follow a standard analgesic ladder, where you work up a number of steps of increasing strengths of painkiller, moving from simple paracetomol to non-steroidal drugs and then moving on to opiate type morphine type substitutes, to control discomfort. And in the vast majority of patients good control of pain is achievable through simple means. Side effects with increasing drug dosages, however, can be a problem.

And in those patients who are having their quality of life affected by the side effects of the necessary painkillers, there are a number of other methods we can use to help control the pain. And they can either be through injecting the nerves around the pancreas, and that’s called a coeliac plexus block, and that can be done either through the skin under x-ray control or using a telescope using endoscopic ultrasound control or alternatively, you can cut the nerves using a keyhole operation in the chest to divide the nerves so that the pain stimulus from the pancreas doesn’t reach the brain.

And that keyhole operation in the chest is called a thoracoscopic splanchnicectomy. These can greatly improve patients who are otherwise finding the side effects of the drugs they’re required to take disabling and in, particularly, in the fitter patients who are wanting to carry out, have a very normal lifestyle but find that they’re quite drowsy through the painkillers etcetera. They can get a great deal of benefit from a surgical or radiological approach to their pain.

When did you start needing pain relief?

It was interesting because I probably needed, started to need it in June. That’s a month or so after, or three or four weeks after the recurrence was diagnosed. And to begin with I just remember taking a tiny, tiny dose of Oramorph and feeling rather pleased that I only needed 2.5 mils, which was about 5 milligrams. Now I’m on 130 milligrams twice a day. And I’m amazed that I can tolerate quite so much of morphine, a slow-release morphine, without feeling fuzzy in the head. And I don’t feel fuzzy in the head. I appear to be quite clear headed still. Now I know the drug, you do get tolerance to it. But I would have expected, and certainly from looking after other people, I would have expected to be, not be able to keep on functioning, not to be able to drive, read, work. And I have been able to do all those things.

Is there a downside to it?

There is a downside in that when I step up the drug I tend to get, feel quite nauseated. And it does seem that sometimes I feel quite nauseated on it. But it’s very difficult to sort out whether it’s the drug that’s making me feel nauseated or the fact that the glands in my, around the pan-, where the pancreas was are actually enlarged and causing pressure on what’s left of my stomach. So it’s quite difficult to sort that out. And certainly in the last few weeks I’ve been retching more and trying to sort out how I manage that and what it’s due to, and whether eating a bit of food before I take the drug or whether it’s better to take it on an empty stomach. And how much top-up I need of the morphine.

I mean I think that’s been, the hospice people have been very good in trying to help me manage the pain. And I’m not in pain most of the time. But it’s not perfect. And I think palliative care is much, much better than it used to be, but it’s not perfect. And I think people who say it’s perfect, I don’t, well, it may be perfect for some people. But certainly when I’ve seen people and managed people who need palliative care, I think sometimes we are a bit gung-ho in saying that, We’ll keep you out of pain. You know, it’ll be fine towards the end And I think sometimes it’s a bit disingenuous that we’re not quite as honest about the fact that people will still feel ill. And that’s what I find most difficult now is that I feel ill quite a lot of the time. Not all the time.

And I came home and I was home for about a week and a half but I was in terrible pain. I didn’t actually go to my home. I went to my daughter’s house because we had building work going on here, but while I was there I developed terrible pain that the painkillers weren’t helping. And the palliative care team were coming out and keeping an eye on me and the palliative care nurse suggested that I went to into a hospice, which she said they could get on top of the pain for me and help me. So I went into the hospice for a couple more weeks and it did get on top of the pain and I was able to come out and sort of resume my life and I had, I was doing things quite well at that point. I was going out and getting dressed every day and, you know, doing lots of stuff, going out to the market, going round friends’ houses, you know, I was in pretty good condition.

But then I started to go downhill again and I was getting a lot of pain again and I had to go back into the hospice just recently for another week and a half just to get on top of this pain again, strengthen the injections that I was having, basically. And then they’ve let me home and this is the point I’m at now, where I’m home taking injections each day, two to three times a day, which sort of keep me okay, keep me sort of pain-free. it’s been a rough ride because we were waiting for the district nurses to do it and they could only come out every six hours or so, and by then I was climbing the wall with agony. But my husband has been taught how to do the injections now and he’s just learnt today, so it’s been really good. He’s done it fine and that’s going to open up a whole new life for us. We’ll be back to being able to go out again and do what we want to do.

More recently I’ve had terrible back pain, chronic back pain, which we went through the GP, but then out of hours you go onto an out of hours system. And one time, when the pain does come it, it’s like, I grade it ten out of ten, maximum pain. It goes, it can go on for about fifteen twenty minutes and we phone the on-call system. And basically got passed from doctor to doctor from shift to shift, and five hours later got a further phone call saying, Do you still want us to come By which time I was asleep in bed. Been through it all.

What I’ve done more recently is engaged the Macmillan team, since the latest diagnosis, and things coming nearer to the end. And that’s been a blessing. And they’ve coordinated the pain control and coordinated everything. And it’s just, I like having a personal service, they’ve really eased, eased lots of things. And made it easier with the GP, because the Macmillan team don’t mind going in there and doing what they need to do. And they’ll do it there and then. Whereas as a polite punter, member of the public you just don’t have, you don’t seem to have that clout.

You mean the Macmillan team will go to the GP’s surgery?

Well they’ll phone from the house, and seem to be able to discuss direct with the doctor, what pain, or discuss pain control with them there and then. Whereas with the, it seemed almost with me, I have to wait, wait two weeks to get a slot. Or I was waiting two weeks to get a slot, Try this, see what it’s like, come back in two weeks Well at that point the, the bouts of pain were terrible. And it, you know it could’ve gone on for six weeks, three appointments and it not be sorted. I’d be going through these periods of terrible pain.

Whereabouts is the pain in your back? Is it low?

The pain is in the lower back. Lower back, in the lumbar, is it lumbar part? it’s sort of centred there. And I do, I get again with, working with the Macmillan team, and some drugs there we seem to have, and learning to live with that pain, there’s various techniques that I can do, I use water bottles that aren’t too hot, and literally physically massage my lower back and massage my stomach, using a water bottle. Use the pain relief and use Oramorph, I can manage that now. And get the pain from being chronic, down to being reasonable in a short period of time.

And you do the massage yourself or do you get someone else to do it?

I literally, if my wife’s around she’ll help me do it, or I can. it’s quite funny I can literally do the two together. Massaging my stomach and my back which is quite funny to see really, but I can do that now.

But the pain was, it was not good. I was using more and more oxycodone and that brings the same side effects especially to due to constipation, which makes life quite difficult. And my doctor had already explained to me a procedure called a coeliac nerve block whereby alcohol is injected into the nerves that are around the inside, inside of the stomach cavity. obviously a difficult place to get to. So it’s not a straight it’s a straight forward idea, you just inject alcohol into the nerves that are being used to transmit the pain from the secondaries, when, where this pains coming from. And with a bit of luck they, the nerve is sufficiently damaged that it can’t any longer transmit that pain. Again with a bit of luck your body doesn’t bypass it in someway, which it will try to do. And you therefore experience reduced pain…

There’re various ways of getting the needle into the nerve, but it’s not easy because of, because the nerves are inside the ribcage nestling down against the spine. And the way that my doctor prefers to go is through the back with a needle which is guided by x-ray and wiggles its way around and finds the nerve, and then the injection is made. That’s done twice, one for each side of the spine. That’s not without its hazards because the obstructions along the way including the aorta, which is not something you want to burst, and it’s also not something that you want to inject alcohol into. So the risks of this procedure, whether it’s done by this x-ray guided method or, or any other method, is to actually rupture the aorta whether that’s ever happened I don’t know it certainly never happened in my doctor’s experience. But there’s also a possibility that in going into the nerves to inject the alcohol, accidentally included or completely mistaken for the nerve that you’re looking for, they’ll hit another nerve or other groups of nerves, and the side effects of that is permanent paralysis of the legs. And that apparently can be up to a one in five hundred chance, which is not it’s a figure that you need to think about. You, you just, you don’t sign consent to that lightly. One in five thousand maybe you would, you would not think so much about, but one in five hundred that’s quite a lot of people. It’s actually what I was having to decide whether to, to go with this treatment or not and, and that statistic was something that’s keeping me from not really wanting to.

But the pain was getting worse. My constipation was getting worse. I couldn’t really see life getting any better if I stayed on purely med, medication for pain relief. And that’s when I made a decision to take this ground floor flat. I thought it, ok I get a ground floor flat and then if I am confined to a wheelchair a least I’ll have some, some things will, will not be so difficult as living upstairs in a wheelchair. So I agreed to, to the procedure. A short stay in hospital, I think it was the day before the procedure or maybe two days, just to settle down.

The procedure was under what’s called sedation but it’s a very heavy sedation. It’s the, the anaesthetist is aiming to keep you on the cusp of consciousness. So rather than, than what you’d think of as normal sedation, just a bit dopey, in fact it was very, very close to a general anaesthetic and I don’t recall anything of the entire procedure. I recall the anaesthetist putting the cannula in. Had to have a couple of attempts at that. And the next thing I remember is waking up in the recovery room not feeling too bad at all. And in my case the, the operation was an almost immediate success, I could reduce my fentanyl by half. My oxycodone use went down considerably. And I can still walk around. So it’s altogether really, really good, one of the few positive things to have happened recently.

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

And then I think she got to the stage where she was finding it difficult to breathe sometimes so she had some sort of pains in her chest, and her feet were really swelling up now because by this time her body just couldn’t function normally. And I remember that, calling the doctor every time she couldn’t breathe properly. At this stage it, it got quite bad and what had happened was that the water was building up within her body and it was filling up into her lungs. So at that stage they took her into hospital.

But that was the worst time ever because they left her in a sort of, like, the emergency ward overnight. But because she was on drugs, certain drugs now I think it just meant that she was getting more and more, a bit more and more delirious as well. Of course she had her sort of bed sores. They’d given her some medication to try and get the water out of her system but she ended up just urinating on herself quite a lot.

And I remember at that stage they sort of left her in the sort of emergency ward not changing her incontinent pads and I had to sort of go and try and find someone. And I remember, I, I remember to this day in my sort of panic to just get somebody, because for 12 hours now she’d been left in this wet nappy almost, and she said to me, I need someone to change me, I need someone to change me And I just grabbed anyone, this lovely nurse, who was a male nurse, for, this Filipino male nurse said, Look, I’ll come and do it He did it, and afterwards I remember my mum getting really upset, she cried. And for her it was the worst indignation, that a male had actually changed her and cleaned her and she just felt completely violated. Though he didn’t, you know, he really did, but I didn’t even think about that, I didn’t even think, you get to a point where you don’t think about that person, you know, that they’re still a human being and she still has, there’s an emotionality here, it’s not, you, while you’re trying to deal with the physical things that you disconnect the, the human-ness from it and you just think as long as I can get her changed. But she was really upset that, you know, of the fact that she felt humiliated, that she’d had to expose herself that way to, you know, a male nurse and be cleaned like a baby.

And you get to the point where you think she probably wouldn’t even be thinking of that in the pain that she’s in, but she was still and you sort of forget there is still a sense of her dignity. In all of this, there is still her dignity as a human being that is above all of this. And somewhere along the way you lose that. And everybody else seems to lose it because they see it more as a physically as opposed to a human thing as well. And I think that’s the biggest wakeup call for me that I realise it now it’s not just about that, it’s also about that’s all she’s got left to hold on to.

Yes. Pain was always an issue, all the way through.

How was that being alleviated?

Well the problem was that Karen was not good, I never, I never understood her attitude to be honest, towards her pain. She never allowed the practitioners to fully deal with the pain. Or put it this way they told, they told us about the whole levels of pain relief that you can go through, starting with the lowest level of obviously just paracetomol to start with. And we understood about the hierarchy.

And they also made it clear from the very start that the only effective pain relief is pain prevention as opposed to pain relief. Take all the medication you need to, to not allow it through, and then that’s how you manage it. And we understood this, and Karen seemed to understand it, yet she never actually practised it. So through the whole eighteen months of her illness, pain was an issue every single day.

You know, she was just amazing. And that went on until the point at which she just you know just couldn’t get out of bed anymore. And by this stage, you know, she was being given such a high dosage of morphine that she’s largely not aware of what’s going on anyway. So she would drift in and out of consciousness. She would time, sometimes be hallucinating. She refused to have very much morphine until very late on. This whole thing about her never really accepting drugs and just putting up with the pain went on and on and on.

But in the end she started, her mind, she started getting confused. Now I do wonder whether the cancer had actually spread to her brain by this stage. And she’d be sort of hallucinating and having strange thoughts, and getting quite anxious. And at one point as well when she was, again you know basically so ill that we thought any day she’s going to die, she actually started becoming more and more alert, and wanting to make all sorts of decisions about all sorts of things. She was phoning people and getting them to come over so she could sort things out. I mean it was, it was you know, it was, all a bit disturbing really that she was getting sort of more and more alert.

But in the end I think she realised that that was disturbing her as well. And in the end she sort of asked them to give her a higher dose of morphine. And after that you know, that was the point at which she, she largely became, she just would drift in and out of consciousness. And that was the point at which she stopped being able to get out of bed. And that must’ve only been days or a week or so before she died.

Oh as soon as the stent [was inserted], yes, her jaundice was fine. And then we always knew when the stent was slipping because she would start to go yellow again. During the course of her illness she had five stents. That’s very unusual, and certainly in the specialist hospital she was treated they had never put that many stents in anybody, because people usually die.

She didn’t become seriously, seriously ill in a way for, well it’s hard to say really. She started to become more, she started to look more frail and ill and small maybe two months before she died.

And she became oedemic, so you could see that that was starting to happen.

She had oedema?

Yes. She went into hospital three weeks before she died. She walked into hospital, carrying her suitcase, in order to have another stent put in. So this was either the fifth or the sixth; I’m slightly hazy as to at what point that was. They couldn’t get another stent in. It was just too many and too many problems. Well they got one in but it was very, very difficult. And it was slipping and it wasn’t clear. And she was more ill already. And that level of intervention was hard, was hard.