Symptoms of more advanced disease

Here we talk to people who had pancreatic cancer about the symptoms they had when the disease became more advanced. We also spoke to partners or adult children of people who had died. They talked about symptoms that people had mentioned during their last months. These included:
  • Pain
  • Swollen tummy
  • Swollen feet
  • Dizziness
  • Feeling sick
  • Diarrhoea

Ben worried about the future he knew he was living on borrowed time. Sometimes he had…

Age at interview 40

Gender Male

Age at diagnosis 39

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So how are you feeling now? Do you have to take any painkillers now?

Now and again I do. Basically, I take a solution, Oramorph because it’s morphine based. I take about two spoons of that if and when needed and I also take the dihydro-codeine, which is like thirty milligrams, little tablets. I also take the chemotherapy tablets

So do you sometimes have pain in your abdomen?

In the abdomen, in there, yes.

Really on this side, basically, where the pancreas is, just behind the back there somewhere.

That’s where the main pain is, sometimes on a Tuesday after treatment. it’s strange because it comes and goes this one and I suppose it’s as the solution is going through your system, sometimes you get pains in the groin area.

Oh.

Which happens or it doesn’t happens. it’s strange [laughs].

Sometimes it’s there and sometimes it’s not. The main other thing is tiredness, just very tired.

But that’s with everything else with cancer it’s just one of those things, you can become tired, quite tired and lethargic but, anyway, my sleeping patterns are a joke. I just go to bed at twelve o’clock and wake three or four times through the night. No pain or anything, just will wake up.

Like last night I went to bed at one and I was awake every hour up to half seven, eight o’clock this morning when I had to get up. You know what I mean, sometimes I’ll just get up and sit downstairs on the computer and do something.

Do you worry about the future?

Yes, always. I try not to but what can you do.

Yes.

Because you know that at the end of the day you’re living on borrowed time, basically.

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When Hamish had a recurrence he lost a great deal of weight. His abdomen was distended, and he…

Age at interview 76

Gender Male

Age at diagnosis 72

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About last August I started getting into trouble again with my tummy and generally feeling weak and not myself. So back I went to the doctor and eventually, in January they decided that, yes, there was a spot there, after having done a CAT scan, on the pancreas again.

So this would have to be treated but he wanted to make sure and would leave it for another six weeks to see what, how it developed and what would happen. During that time he also put me on a course of antibiotics, which blew me up and made it almost impossible for me to work, to eat and I lost a lot of weight. And then in March we went off to the States to stay with family for a few weeks, where I really wasn’t able to eat anything or very, very little and I was losing as much as four or five pounds a week. So we came home early and went straight back to the original hospital, where I had the operation done, where they examined me and did some further tests. It certainly showed that the tumour had grown. I was having trouble with getting the food through my stomach, which was causing a lot of [um] unpleasant problems in that area.

And that’s where we are at the moment. My basic problem, actually, over the last six months I’ve gone down from about fourteen and a half stone to, I’m now down to eleven.

So it’s holding my trousers up [laughs] I do get a lot of trouble with my tummy, which they reckon, must be coming from the tumour because it’s irrational in the way it behaves, I cannot get to a regime which maybe works for more than two days and then it blows up again and does something else. So that in itself has been a problem.

By blow up’ you mean you feel distended?

Very distended, yes, yes, and suffer from diarrhoea one minute and constipation the next.

So that that has been unpleasant and it’s lowered my value of life, I suppose.

My quality of life. Somewhat but I’m here and still fighting.

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Saba’s mum had pancreatic cancer that couldn’t be treated and died 11 months later. She had swollen feet and felt very tired.

Near the end of her life Sabas mother had felt very tired, her feet were very swollen and she…

Age at interview 45

Gender Female

Age at diagnosis 65

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I think the biggest thing that we noticed was that her feet started to swell quite a lot, huge. My cousin was getting married in the summer, and my mother had been looking forward to my cousin’s wedding. She had, like, you know, it’s going to be a big occasion. She had, likewe’d gone shopping and bought her new saris and new shoes. She was looking forward to sort of like getting dressed up. But her feet were starting to swell. I mean they were huge. It was almost as if she had elephantiasis and that was due to the fact that because her liver was starting to slowly become dysfunctional. Her body couldn’t pump her sort of body water so it would all go to her feet. So she had to lie with her feet up all the time and we’d have to give her these special tablets that would, you know, get rid of the water. But that was, I think that was the most difficult thing for her was that she couldn’t fit into any of her shoes. She couldn’t walk properly because her feet were swelling up. She felt tired a lot of the time. She was prone to picking up colds and flus. I had to we got a carer that would come in one day a week for about an hour, would come in the morning to, to help my mum get washed, make her breakfast. But because things are much slower with my mum, they would almost have to literally leave after, before the one-hour was up. So afterwards she’d be left sitting at the dining, dining table eating her, halfway in between eating her porridge, you know. And so it didn’t, I didn’t feel that was really of, of a lot of use. So I would say the hardest thing is the palliative care after that.

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John’s first wife died of pancreatic cancer. Surgery failed and the cancer spread to her liver. She had a lot of pain towards the end of her life.

John’s wife had abdominal pain, headaches, dizziness and shortness of breath. One day she also…

Age at interview 69

Gender Male

Age at diagnosis 53

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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 calledin and everything seemed to be going well and that was the end of November.

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Other men who had lost their wives to pancreatic cancer also talked about symptoms they’d had at the end of life.

Simons wife Karen was in gradually worsening pain near the end of her life. She also had…

Age at interview 39

Gender Male

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But you know as I say, pain was an issue almost every day, for the whole eighteen months. And it got gradually worse and worse and worse, because obviously the cancer was growing.

Did she have any other symptoms at that stage? Did she have any jaundice or did she develop any diabetes?

No. She, no. I mean for the first few months there were just no symptoms at all. She never got jaundiced, she never got any of the classic signs or symptoms of pancreatic cancer. What ended up happening was the pain was always an issue. Then she started getting diarrhoea, which was awful because that was chronic. And that went on for oh, I mean that must’ve started after about six months, it, you know.

Was she given anything for that?

Again they tried, they tried everything they had. She saw the specialists. She went back to you know the specialist through her private health, and they tried everything they had, but it didn’t work. You know just chronic diarrhoea. And it, that was, that was crippling.

I mean you know cancer just tears you apart. You know it just gradually seems to just destroy you know the body, and this happened fairly early on really. Karen loved food. She lived for food
But in the end I suppose, I don’t know the month but getting towards the end of 2008 she started getting a distended stomach, just retaining fluid, and I think that you know the body at that point is just trying to cope isn’t it? So, that was also very crippling.

You know to the point where we went, well I suppose about November time 2008, just over a year after the diagnosis we went away to a hotel for the weekend with the children, and Karen was having to sleep sitting up.

You know. So each night I would sort of arrange all these pillows and everything so that she could, because she, because lying down was too painful. And that wasn’t, that was, I suppose that was partly the pain in her back, but also this distended stomach. It just was so sad for a woman who had always been so fit and active. She took it on the chin you know and she, she never seemed to really complain that much considering her life had you know was, had just been taken away from her really. So the diarrhoea and the swollen stomach were two of the main things.

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Davids wife Fiona was very ill, found it hard to eat, was sick, constipated, had fluid retention…

Age at interview 43

Gender Male

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Although Fiona was physically quite deteriorated, she was still thinking very clearly so…

How physically deteriorated, was she in pain? Or, or what? Was she just tired or…

Well, [coughs] there is pain. And she’d been on painkillers for a good deal of the time now and she was receiving painkillers automatically. So, in terms of pain, yes, but that was being controlled.

Was that a morphine pump?

Oh yes, yes, yes, she had other painkillers before but she was on to morphine, but in terms of deterioration of the body she was now, well, I suppose you would say, haggard, drawn, not the person she was six months before.

Had she lost a lot of weight?

She’d lost a lot of weight, her complexion was an ill complexion. Somewhere between grey and yellow which is not nice. So physically, I mean she was in a wheelchair. But in terms of upstairs and mentally, she was still very with it. She, she would be quite sleepy, but when she was not sleepy she was still very much herself, clear thinking person. So, when approached or discussed, this trial, I was very comfortable to allow her to ask the questions that she needed to know…

Also she was finding it very difficult to eat and she was being sick or attempting to be sick quite a lot, a lot of the time. Now that didn’t just occur near the end, that had been going for a little while.

But that and also well it depends t’s like in terms of bowel movements that almost stopped and there was constipation, things happening from some of the things she was taking.

So that in itself was a handful. But I think she had deteriorated anyway. She had to go into hospital and be drained a couple of times. And it though I suppose the cancer was running its course and she was quite weak. And being able to, to manage that here was difficult. Not so that well for me I was now off work.

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Symptoms that people have at the end of their lives may include weight-loss, muscle atrophy, extreme tiredness, weakness, major loss of appetite and excess fluid in the abdomen (tummy) (see ‘Symptoms of more advanced disease’).
People may also develop a bowel obstruction due to tumour growth or a deep vein thrombosis of the upper or lower extremities (Trousseau’s syndrome). They may also have more pain than in the earlier stages of the disease, but doctors have many ways of controlling pain (see ‘Pain management and other palliative care’). People often die from a secondary medical problem, such as pneumonia.

Learning of a recurrence

Here people share how they reacted when they found out that their cancer had come back (also known as a 'recurrence'). People reacted to the...