Ann - Interview 01

Age at diagnosis: 62

Brief Outline:

Ann was diagnosed with pancreatic cancer in May 2007. She had a Whipple's operation and then chemotherapy. Ann recovered and was 'incredibly well' for two years. Then symptoms returned and a scan showed the cancer had come back with secondary tumours in her lungs.

Background:

Ann was married with 3 children. She was a GP for more than 35 years. She retired when she found out she had pancreatic cancer. She was the co-founder of the Database of Individual Experiences (DIPEx) project and the associated methodology behind the research on all the sections of this website. She set it up inspired by her own experience of breast cancer. She was Medical Director of the Oxford University Health Experiences Research Group. Ethnic background/Nationality: White British.

More about me...

Ann had breast cancer in 1995. After treatment, she recovered and led a busy life. In May 2007, she noticed changes to her digestion. Her poo was more fatty than usual and hard to flush down the toilet. She also noticed a strange metallic taste in her mouth. She went to see her GP, who sent her to see a gastroenterologist (a specialist in the digestive system). At first, Ann thought that she might have bowel cancer.

Ann had various tests, including a blood test, colonoscopy, endoscopy, ultrasound scan and a ERCP (Endoscopic Retrograde Cholangio Pancreatography). Ann was devastated when the consultant told her she had pancreatic cancer.

A surgeon recommended that Ann have a Whipple’s operation. Ann dreaded this operation but didn’t think there was any other option. A date for the operation was set for two weeks later, so Ann went away on holiday, walking in Corsica, which she enjoyed.

Ann returned from her holiday for the operation, which took 5-6 hours. The pathologist found a small tumour that was 2cm. Some of the lymphatic glands close to the pancreas were also affected by cancer.

After surgery, Ann felt terrible and at times wanted to die because she felt so ill. She felt sick for some time but couldn’t take anti-sickness pills (antiemetics) because of the side effects. She had a nasogastric tube, a drip and a catheter.

Ann had an epidural (an injection in your back to relieve pain) for three or four days, which controlled the pain very well. She also had a morphine pump, (for after the epidural), but she only used it once.

Ann felt that the surgeon was excellent but thought that medical and nursing care could have been better after the operation. She felt that she needed a doctor who could be an ‘advocate’ and who was interested in her case. She found that the showers and toilets were dirty at times. However, she felt ‘protected’ in hospital and didn’t want to go home at that stage after surgery.

Ann got an infection in her abdomen (tummy), which gave her a fever. Doctors drained the abscess and gave her antibiotics. Gradually she started to drink and then eat again in small quantities. She had lost two stone in weight.

Ann stayed in hospital for three and a half weeks, and then went home. Five weeks after the operation she managed to eat clear soup and some other foods, such as ice cream. Ann felt very tired for weeks. She went out of the house for the first time about five weeks after the operation. Her stomach felt bloated and tender for a while, and she had headaches.

Two months after the surgery, Ann went to France for a holiday. She felt well enough to swim and felt good, though she still felt very tired at times. She ate small meals frequently. She had to poo several times a day and verged on diarrhoea.

When Ann returned to England, she felt under pressure to start chemotherapy. She felt pressure from herself, and from family and friends, even if this wasn’t talked about. She decided that she would try to have at least some of the 18 courses of chemotherapy that the doctors recommended.

In October 2007 Ann had a CT scan and more blood tests and she started chemotherapy treatment (gemcitabine). Ann managed to do six of the 18 courses, over about three months, but had to stop the treatment because she couldn’t handle the side effects.

The side effects of the chemotherapy included sickness, nausea, tiredness and depression. Ann took Nabilone (a Cannabinoid extract) for the sickness. This made her feel ‘woozy’ and she had to stay in bed, but this was better than feeling sick. Each time she had the chemotherapy she felt ill for about three days.

After stopping chemotherapy, Ann felt very well for two years. She went back to work part-time. In 2009, Ann suddenly started to get digestive symptoms again. She found she was waking at 3.30am to poo. She had discomfort in her tummy, just under her ribs. She also felt distended and bloated, and had some pain down her leg. Ann had a CT scan and discovered that the cancer had come back, not only round the area of the pancreas, but in her lungs too. Soon afterwards, Ann also had some pain in her chest.

Ann felt desperately sad to find that she had a recurrence of the cancer. It was very difficult telling the children and she found it hard to deal with other people’s reactions.

Since then Ann has needed strong painkillers, including morphine, and hopes that her doctors will be able control her pain. Ann has never wanted ‘alternative’ treatments for cancer.

She has made a ‘living will’ and does not want resuscitation if she suddenly collapses and there is no chance that she will recover. She also thinks that people in the UK should have the right to an assisted death if that is what they want.

Ann has prepared for her death. She has looked at her Will, sorted out her drawers, thrown away rubbish and put all her photos into albums. She would like to die at home if she can get enough nursing care and support, to maintain ‘some sort of dignity’. 

We spoke to Ann in 2007 and 2009. 

Two years after her surgery and chemotherapy, Ann had bowel problems again. She also had discomfort in her abdomen, felt bloated, and her sense of taste changed.

But mostly I’ve been really well. And I’ve been cycling, playing tennis, swimming, a lot of travelling, seeing grandchildren a lot, looking after them. Working, meant to be half-time, much more than that. I gave up working as a GP after thirty years. And it was absolutely the right thing to do, because I didn’t want to look after people any more. And I just didn’t have the stamina also, to be doing those very long hours. I needed more flexibility. And I think I got lulled into a sort of s-, into the state of thinking it was going to be all right, but not quite. But I think everyone else got lulled into that feeling. And yet I knew what the statistics were. I knew that the prognosis really is still terribly bad. And having everyone, everyone was sort of drinking my health two weeks ago. You know, “You’ve done two years. Isn’t this fantastic.”

 

And then suddenly I started to get some bowel symptoms again. And that is sort of how the whole thing had started, that I was waking up early needing to go to the toilet and open my bowels. And it started again that, although my bowels had been problematical all, for the last two years in that I was having to go four or five times a day, suddenly I was waking at 3.30 in the morning needing to open my bowels. And I thought, “Oh, I wonder what’s happening?” And then within a week I was getting quite a lot of discomfort in my abdomen, in what’s called the epigastrium, just underneath my ribs, in the middle, and it was feeling tight. And I noticed that my skirts, which after the operation and for the last two years had been really falling down, I’ve had to put a belt on them. It had been very nice really because I went back to the weight I was when I got married. But suddenly I was feeling distended. I hadn’t put on weight but I was just feeling bloated. I had a hernia which was feeling very uncomfortable. And so I went for a CT scan. 

 

And I’ve just remembered something else about the last two weeks which made me think that things were different, was that my taste changed, and I’m really interested in taste, in that suddenly I was wanting chicken soup broth again and custard and all sorts of things which I wanted when I was really ill. And I didn’t want to eat the sort of food which I had been eating previously. I just fancied those sorts of things. And somehow I think taste is really interesting, as to how illness affects it. I mean I know chemotherapy does, it gives you a metallic taste and various things. But this is, you know, I hadn’t had any treatment. It was just feeling something was going on and wanting certain sorts of comfort food.

 

It was comfort food rather than you felt that other foods would upset you?

 

I think it was a bit of both actually. I just, you know how sometimes you really long for something sweet or really long for something savoury. Well, I really longed for that sort of food. And probably, so something quite, well that sort of soup. I didn’t want other sorts of soup, but I wanted that sort of soup, and started making it for myself. And, and buying Marks and Spencer’s custard. I mean the sort of thing I didn’t normally do at all [laugh]. And I felt that’s what I wanted to eat.

 

When Ann looked at her CT scans she could see that the cancer had come back in the area where her pancreas had been and that it had spread to her lungs.

And I remember lying there thinking, that was five days ago, thinking, “Well, I’ll be very surprised if there’s not something going on.” And he, the scanner, the radiotherapist, radiologist came back and said could he then do a scan of my lungs? And so I knew then there was something wrong going on. And it was strange, because I think he was more upset than I was at that point. Because I, in a way I’d prepared myself. He had done a scan when I thought I had symptoms about a year ago and it had been nothing. So I think, I don’t think he thought I was making it up, but I think he felt partially reassured, although he’d always taken everything very seriously. And I think one of the great things was that when I rang my GP telling him the symptoms, he got the scan immediately. So I didn’t have to wait. And I think that’s one of the things which is so difficult. And moreover I didn’t have to wait for the results. I didn’t have to wait for the next appointment, because I knew the radiologist. He gave me the results straight away. And if he hadn’t, it would have been nice if, for other people, that someone could tell you almost immediately. I think it’s rather like when you have a baby and there’s that hush in the room when something’s gone wrong. And you know something’s wrong, and nobody’s saying anything. And s-, I think when people are doing the scanning there is a sort of hush afterwards. Because they say, “Well, your doctor will let you know” in a way, said in a way that somehow makes you alert there might be something wrong. 

 

Anyway he showed me the scan. And it was very obvious that if you compared my old scan with my new scan that the cancer had come back, not only in my, round the pancreas area, where the pancreas had been, but also there were some secondaries in my lung. I’m still trying to take that on board in a way.

 

Ann feared the side effects of chemotherapy and found the decision to start the treatment very hard. She felt pressure from others and from within herself.

So you got back from the summer…

 

Hmm.

 

… and you felt pretty well. Optimistic?

 

Yes, optimistic and well, because once you stop feeling ill actually, I mean, I certainly wasn’t thinking about, well I managed not to think about the prognosis really, which I knew wasn’t terribly good but I managed just to put that on hold and not think about it, until I had to go and see the consultant and talk about what I was going to do, chemotherapy or not. And I certainly, I think, before I went away in the summer I was saying, “I’m definitely not doing it.” I felt quite pressurised about doing it, having at least some of it, at least trying it and the statistics I’d been given, I had a 60% chance of recurrence within two years, which I was quite shocked at how high it was. And that if I had the gemcitabine, which is one of the chemotherapies that they use that has been shown to be more effective than the 5-Fluorouracil, which they used to give, which if you take that for six months weekly then you, the likelihood of recurrence is down to about, is brought down by 20%, so that would be 40%. But of course, within that you don’t know who’s actually going to benefit. And whereas with the operation I knew I had to have it. If I didn’t have it I would obstruct, get jaundice and be very ill and die. With this it’s very different, it’s thinking, “Well it might help and it might not but while I’m having it I might be very ill. So that was a really, really difficult decision, and I kept not wanting to think about it, in fact tried not to think about it.

 

When you say you felt pressurised, do you mean by yourself or by other people?

 

Both really. I felt pressurised by myself in that I felt if I get a recurrence and haven’t done it, people will say, “Well it serves you right.” And they may not actually say it but they probably would think it, “Well that was a silly thing to do.” So I felt slightly pressurised by myself. I felt more pressurised that my family particularly wanted me to at least try it. And my friends, that I should at least try it because a lot of people said, this particular chemotherapy isn’t so terrible, it doesn’t make people so, so ill. 

 

At Ann's ultrasound scan the radiographer told her that her bile duct and pancreatic duct were dilated.

And he [the gastro-enterologist] said, “And then you’ve got an ultrasound in two days’ time.” So I went for the ultrasound and that’s when I really realised what was going on. Because I went for the ultrasound expecting it to be pretty normal. And they did the ultrasound, and the, the radiographer who was doing it kept going backwards and forwards, backward and forwards over the top part of my abdomen. And so eventually I said, “Is there a problem?” And she said, “Actually, the bile duct and the pancreatic duct are dilated. And I don’t know why.” And I just knew then that I must have pancreatic cancer. Which I didn’t want to think about it really, because I know it’s a horrible cancer to have. And so I was pretty shaken by that really.

Ann loved looking at her old photographs. They gave her more pleasure than any of her other things.

Say something about your photographs.

 

Oh, yes. The thing I have done, which has been the most enormous pleasure, is over the years I’ve always kept photograph albums. And I now must have about thirty enormous books of photos. And I’ve spent a lot of time recently just going through them, looking at them and enjoying the times that I’ve, that; they remind me of times which have been very good, not all of them very good, but all the sorts of things we’ve done as a family and as friends. And I think they’re a fantastic memento. And I think the family will find it, I think, I’ve always said, “If we had a fire in our house, the one thing I’d want to keep are the photo albums.” Of course now I’ve got lots of them on sticks, but there’s nothing like looking at them in books. It’s not the same as having them on a computer, going through them. There’s something about turning over the pages and seeing those photos and laughing about the times that one, certain things happened, and realising how different everybody looked then, how much younger we all looked, how much older we all look now. But they have given me more pleasure I think than anything else of the sort of things that I have. 

 

When Ann saw a new young doctor, who was not familiar with her case notes, a misunderstanding left Ann feeling shaken.

Yes, I had a very rather disturbing incident when I first went for my first chemotherapy. I’d had the blood tests and I’d had the scan and I went and they said, “Oh gosh, we’ve got to get you consented.” It’s a funny sort of way of putting it. Anyway, they, I had to consent to having the chemo, which is also quite funny because you don’t want to have it really. But, so you’ve got to consent to something you don’t want to have, but anyway.

 

So, a young doctor, very nice young doctor came down to talk to me and she said, “We’re going to give you gemcitabine, you know what it’s for.” Yes, I said, “Yes, I do.” And she said, “And it’s palliative care.” And I looked at her and said, “Palliative, no I didn’t know I had a recurrence, I thought the operation had removed everything that there was there and that this was just adjuvant”. And there was this sort of terrible moment when she was flicking through the notes, she’d never met me before and I was thinking they haven’t told me something. Because I said, “Well, if it’s palliative, I don’t want it. I don’t want to go through this if it’s palliative.” I’d already decided that if I had a recurrence, for me I didn’t want to have any more treatment because I knew it was very, unlikely to be very successful. 

 

Anyway, she went off and then came back and said, yes, I was right, it was adjuvant and explained that normally they give the 5FU which is a different drug first off, and I think because the NICE guidelines haven’t said gemcitabine, although most studies have only just been published, although I think it must be to do with cost, I think. Anyway, therefore she thought because I was on this other drug it was going to be palliative. 

 

But it, it quite shook me and I think really for a week or two I didn’t quite believe it and so I was faced with feeling rotten from this chemo I didn’t want and thinking, “Gosh, maybe I don’t want it anyway, because, or I don’t need it, I’m not going to have it”, But eventually I felt, saw the consultant again and he said no it was definitely not palliative. But it, every so often when I’m feeling not well, it sort of, I think, “Well maybe I’m not well because of the cancer.” And you do, anything that happens, for example, this week I’ve had very bad back ache, well I tend to get back ache, but you start to think, “Gosh is there a secondary in your bones which is causing the pain”. You know, those sorts of things do come to the fore quite often.

 

Ann wanted to be buried because the cemetery was much nicer than the crematorium; she wanted a chair in the park for people to remember her there.

And one of the things I did, and I knew my husband wouldn’t want to do this, but, and I feel slightly bad about putting my best friend really through it, is that I wanted to go and see the crematorium and see the cemetery and just decide a bit more about what I wanted to do when I died. And so one very rainy afternoon we went down to the Co-op to look at, to talk to them about funerals. And we wanted to see coffins. And I mean it sounds morbid, morbid, but it wasn’t at all morbid. For one thing she showed us this horrendous book of, well we thought it was pretty horrendous, book of cardboard coffins. And I quite like the idea of a cardboard coffin. My mother was buried in one, w-was cremated in one. But they had, the most amazing pictures had been drawn on them. You could have whatever you wanted. And certainly a friend of mine would decorate one if I wanted that. Except we felt the shape was not very nice of the cardboard coffins, certainly not as nice as the bamboo ones. It’s a funny idea to think that you’re looking at the shape of a coffin. And maybe for some people the shape does fit their body, but my very thin body, no, I don’t think it would fit it. And, but there were footballers on some of them and flags on others and motorcyclists and s-, some of them were just, The Last Supper. I mean things that I would never want on my coffin. 

 

So we then went on a very sunny day to the cemetery. Which was a lovely experience, and it made me realise that I didn’t want to be cremated, I did want to be buried, because the cemetery was so much nicer than the crem. And it was partly where you have the service. And it’s a funny thing to call it a service because actually I’m not religious at all and wouldn’t want a religious type of service, but where you have the service had the most terrible plastic flowers in it. And it was something that, when I asked if we could take the plastic flowers down, she said, “Only the ones at the front. Not the ones on the wall.” And the idea of h-, getting, having a service with plastic flowers was just something, always being surrounded by real flowers, I just didn’t like the idea of. So the cemetery, we had a funny time. A woman there was very, very nice and took us round. And as we went in there was a, there’s a Jewish cemetery, which is very dour, on the left. The Muslim cemetery is in a different bit of the Oxford cemeteries. And as I’m Jewish nominally I thought, “Oh, well maybe I could be buried there.” But the friend I was with, Rachel, said, “No, no, no. You haven’t, you haven’t paid up, so you wouldn’t, certainly wouldn’t let you be buried there.” And apparently that’s right. I wouldn’t be able to be. 

 

And then there are various different sections of the cemetery, very obviously different. There’s a Christian bit. There’s a bit for the Russian Orthodox. And they all have their very different character. And then there was a, a bit where you could have anything you liked. So there were some which said, “My Mum” and they were sort of five metres high in pink carnations. Not something I would have wanted. But it’s nice that people can have whatever they want in that bit. But there were two bits that we did like. One was the woodland area. And the little bit next to the woodland area, which apparently is completely full of daffodils in the spring and where you can have a, a headstone. You couldn’t in the woodland area. Just have trees. And one or two of my friends have been buried there. And it did seem a very nice peaceful place to be. And what does it matter once you’re buried actually? But it, somehow it did matter. Although I think in a way if anyone was going to do anything afterwards, I would like to have a, I’d like to have a chair in the Parks, which is where I spend a lot of time, all our children have gone and played and fed the ducks, and grandchildren now. And it’s some place where I feel very in tune with. And yet it’s funny for me to be thinking like this, because actually I’m non- religious. I don’t believe in any life after death. I, you know, once I’m dead, I’m dead. And yet here I am thinking it would be nice to have some, a nice place to be. And I haven’t really sorted that one out in my head.
 
You’re not doing it for you? You’re doing it for other people really?
 
Yes, I’m doing it for other people. And of course what actually happens, at the, any sort of service I think I have to leave to my family and friends to do. But I think I felt very relieved that I’d actually gone through that process of deciding that I wanted to be buried and how I wanted that to happen, and that Rachel now knows what I want and can tell the family. And I have told them that we did this. I think they were slightly horrified but totally understood that it’s very much what their mother would do really.

Ann wanted a change in the law so that she could have the option of an assisted death here in the UK.

I don’t think my attitude has changed. I think it’s become firmer that I feel very strongly about dignity in dying and that assisted dying, not assisted suicide, there’s a very important difference, is something that should be a choice. Now I may or may not want to have it. I feel I will want it when I feel I can’t cope any more. And there are some days when I do feel that now. But it’s not something I would rush into just because of a day of feeling like that. I don’t think anyone would actually. And we know from other countries where assisted dying is, physician-assisted dying I think it’s called, is allowed, that only a small percentage of people take it up. But I would feel much more comfortable and be able to approach my death in a better frame of mind if I knew that was an option. 

 

I feel, I mean it’s one of the things I have done in the last five months and have been able to take forward is that there was an article written in The Lancet by someone in the House of Lords, talking about assisted dying, or she chooses to call it assisted suicide. And it prompted me to write a letter in reply to that. Because I felt very strongly that the, the idea, which is her idea, that if you have good palliative care you won’t need it is just wrong. And I’ve certainly had patients who have had very good palliative care but they’ve still not wanted to carry on for the last few weeks of their life. Now one never knows how long the last few weeks of one’s life is going to be. And, you know, one doesn’t know at what point one might say, “I would really like to die at this point.” But I feel very strongly I don’t want to go to Switzerland. I don’t want to be away from my home, from my family. So that prompted me to write this letter. And then, as that didn’t get printed until very recently, I wrote a personal view for the British Medical Journal and have had many, many, it must be over a hundred replies to that, emails, people supporting me. I think there were only two where people were not supporting me. And of course people would write to support me, either friends or colleagues, but a lot of them I didn’t know. But one of the people who wrote saying that they didn’t support me said he hoped I would respect his views. And I do respect his views. But he obviously doesn’t respect my views, because if he did he would allow, he would be saying, “Yes, you’re right. I can die as I want, but you’re allowed to die as you want.” And I don’t think it’s going to be so difficult to have a change in the law which allows people to have assisted dying but at the same time protect the vulnerable, especially for terminally ill patients. I mean I think there is a whole issue about people who are depressed or people who have a chronic illness. But I think if you’re terminally ill, I, I think it’s a much clearer distinction. And I think the people who are opposing it so vehemently are, I mean religious groups are obviously, I just think they’re wrong to not see the other side of the argument.

 

Ann had a 'living will'. She believed that making her wishes clear made the situation easier for her doctors and for her family.

What are your feelings about the living will, do you …?

 

I’ve got a living will. And I’ve just made sure that it’s up to date and signed. And I think all my family know that’s how I feel. I think they respect that. I just think it’s very much easier for everybody around if you, if you feel like that that everybody knows what you want. And then there can’t be guilt between the family about whether we should’ve tried to keep her alive or not. 

 

So it’s for your family, do you actually think it will make any difference in the hospital?

 

I think it’s a signal to the doctors that this is what you want. And I think it does make a difference, in a way that’s quite difficult to measure. But I think, and they don’t always act on it, and one knows of cases where they haven’t. But I think it’s very helpful for everybody if you have one, if that’s what you want. 

 

But I think it’s something that some people find very difficult to do even if that’s what they want and difficult to discuss with their family. And anyway unless you’ve actually discussed it with the family when it happens, nobody might know you’ve got it and it may be a bit late then, which sometimes happens. 

 

But as a GP, I’m seeing more and more people who are giving me a copy of their living will. I mean it’s quite interesting, ten years ago, I think it was a rare thing. But now I mean it’s all on the computer, it says “living will”. And I think that’s a help really. It’s a help, certainly a help for the family.

 

Ann decided to cope with her cancer by 'just getting on with life'. She did not want to talk to a counsellor about cancer or about dying.

Yes, I think the idea that you’re not dealing with it properly because you’re not facing up to it I think is quite wrong. I’ve decided to face up to it by just getting on with life and that seems to me a perfectly good option of a way to deal with having cancer. I don’t see that you, and there’s quite good evidence now that, you know, that a lot of post-trauma counselling is actually not very helpful. And I, in a way having cancer is a trauma and there is a randomised trial I think of people who’ve been involved in car accidents some of whom had counselling and some didn’t and the ones who didn’t did better. I mean, I’m sure the counsellors would say there’s a lot of criticism of that sort of trial but for me, I don’t want counselling, I don’t want to have to talk through my cancer. It seems to me nothing much to talk about really. 

 

I mean, I, there are very practical things I’ve done like re-do my will, and think about all that, sort out some of my drawers, throw away quite a lot of rubbish and stick in all the photos so they’re up to date. You know, practical things that I want to do, but I don’t think that’s anything, I don’t want to be talking through my cancer and dying. I don’t feel that would be helpful. And I don’t think, I think sometimes people think it’s very negative that you don’t want to do that. Well, I see it, for me it’s positive. 

 

After surgery Ann was concerned because the junior doctors did not seem interested in her postoperative care. She felt she needed an advocate.

How much were your problems medical problems during those early days?

 

I think a lot of them were medical. I saw the consultant every day, he would come round, but there didn’t seem to be a doctor who I could talk to about, you know. I saw him, he would come in the morning with the team, and then there was no houseman who I could talk to because she didn’t seem to be interested and didn’t talk to me. And it made me think a lot about what one needs after a big operation. And you actually need someone who is really interested in you medically and why you’re getting, I was getting very high fevers. And eventually it turned out I had a horrible infection in my abdomen and a whole lot of pus had collected which needed draining. And that is not that unusual with this operation, but somehow it took a long time to sort that out. And there was no one I could really talk to about it, who seemed to know what was going on.

 

Did this lead to a delay in recognising it?

 

I think it did lead to a delay in recognising it. And getting a scan done seemed to take longer than it should have done I felt. And draining it seemed to take longer than one wanted it to. And I mean eventually they drained off, a large amount of pus and put a drain in, and then they could find out which antibiotic I needed to be on. And then there was the whole question about whether the specimen had got to the lab. And I just felt no one was making, and that should have been the houseman s-, was making sure all those things happened. And I felt I had to keep asking. And I thought, “Gosh, if I’m doing this and I know what should be done, what about someone who doesn’t know?” Now maybe I was irritating to them and therefore they had a rather bad reaction, but I felt some of that wasn’t as good as it should have been. And, you know, if you look at the scar and everything, that was obviously beautiful and the surgical side had been very, very good. But it was some of the medical input afterwards that I felt wasn’t there. Now whether that’s the way the new set-up is with doctors working shifts, the junior doctors working shifts, or whether it was a particular doctor, or whether it was that really there should be more collaboration between the medical team and the surgical team in the post-operative time.

 

You said at the time that you felt that you wanted an advocate. Who, who do you think this might have been realistically?

 

Well, I felt when I was a houseman one worked with a registrar to make sure you were the advocate of that patient and make sure that you knew and reported. And I felt that wasn’t there really. And if it’s not going to be the houseman, and they, you know, you never knew which one was going to come, but I had one who was particularly responsible, then who is there who look, who’s going to be an advocate? And one of, I mean in a way the nurses are a conduit. But they’re, they have a different function I feel and they’re not advocates in the same way, and it’s a different sort of knowledge which they have.

 

Ann acknowledged that in certain circumstances she might have to go into hospital, but she said she hoped to die at home surrounded by her family.

Yes, I wouldn’t want to go to hospital. But I can see that if I got an obstruction and was vomiting all the time, and they couldn’t manage it here, I might have to go to hospital. And certainly the hospice here is very nice. But I just like the idea of being in my own home. My father died at home and it was very nice. My mother died in hospital after only a few days of illness at the age of 93. It would have been nice if we could have kept her at home, but we couldn’t because she was ill and vomiting and, and, and had to go into hospital. But it was such a short illness that it was fine in a way. But I know she would have preferred to have died at home if she could have done. But she wanted to go into hospital then. But I would just like to be at home with everybody and just to think of dying surrounded by my family and my things. And I hope it would be a nice experience for them. 

 

It will be sad, but you can have a sad but nice experience. And I think, it’s rather like home births. One’s seen some very nice home births, and one’s seen some very nice home deaths. Now, you know, often one does have to go into hospital to have a baby, and similarly with, with dying. But some of the nicest home deaths one’s seen, I would like to aspire to that really.

 

Ann was often concerned about tiredness during her remission; various pains were investigated but no recurrence was found.

I was thinking, going back to talk about the one or two times during the course of the last year that, how you’ve dealt with thinking about it, every now and then thinking, “This is it.”

 

[mhm]

 

And then maybe ending up with why you felt very sure this time, di- --

 

 [mhm]

 

-- as you hadn’t previous times. I mean there have, you’ve quite often said to me for instance that, “I feel weary.”

 

Yes, I think that’s right.

 

What do you think, what do you think you meant by that?

 

Well, I’m very used to being able to do a lot of things. And I would find sometimes at the end of the day or, that I just was, for example some days I was too tired to cycle up the hill to work. And then I’d think, “Gosh, what’s going on? Is there something?” And it was that sort of weariness. Or I’d go for a swim and instead of doing twenty lengths I could only do ten, and there was a sort of weariness that came over me. And sometimes when I’d say, “I’m weary” certainly my husband would say, “Well, you’re getting older.” And I just felt, “Well, I wasn’t weary like this last week. I’m not that much older.” [laugh]. 

 

But I think, and I’m just looking, I mean it’s difficult looking back with a retrospectoscope as to whether there’s been more of that in the last few months. Certainly I had…

 

I think the other thing about being weary was that I knew I was likely to have a recurrence. And I suppose therefore when I got like that I thought, “Oh, gosh, am I, have I got a recurrence? Am I being sensible? Should I ignore it? Am I making a fuss about nothing?” And it’s quite a difficult balance. Because I, after, I think it was after about nine months when I had some discomfort and I went for a scan, which did show something abnormal. But then when they repeated a scan it seemed to, they weren’t sure what it was, and it was normal, I thought, “Oh, well, I’ve made a fuss about nothing.” So, you know, there, it is that difficulty of knowing when to do something... 

 

And the other symptom I’ve had intermittently is pain in my leg. And I have had that investigated and they’ve never found anything. But the sort of pain is sort of a real searing pain that I’ve heard people describe with cancer, particularly at night. And I can’t explain why I’ve got it and nor can anyone else. So that’s always made me feel, “Gosh, there must be something going on.”

 

When her cancer came back Ann took part in a phase 1 clinical trial which assessed the safety and tolerability of a PARP inhibitor. It made her very sick.

And the other thing that’s happened since then is that there was, you know, when, when you get a recurrence you immediately think, “Is there anything I can do?” And I always thought there wasn’t anything. But in fact there was a trial of something called PARP inhibitors that are very new type of drugs that attack the genetic pathway in, for some people who have cancer. And it seemed like a good idea to try and get on one of those trials. And it took several weeks for that to happen. I went to the Marsden to see them. And this is a phase 1 clinical trial, which I was very happy to take part in. But in the event, and there were quite hassles about getting on the trial and whether I could and whether I, when it was going to start, in the event I had to take eight of these horse pills twice a day and they just made me sick. And for me, I just felt, I, I just didn’t want to go through that. I then tried, I remember going to the cinema to see Chanel and feeling quite sick all through it, and then coming out and being sick in the street and feeling, “I just don’t want this really.” And I then, it was suggested that maybe I should try just one of these pills and see if I could gradually increase the tablets. But they still made me sick despite whatever I took. 

 

So in the end I made the decision that I wasn’t going to do anything and just try and enjoy these last few, well, what have turned out to be months. Whereas I thought it might be weeks or days. And I don’t have any regrets about that. I do have regrets that there isn’t something I can do. But I know I’ve always felt very strongly that we often try and do things at the end of life which actually make the end of life rather unpleasant. And there are times when one just needs to say, “I can’t do any more. I’m just going to enjoy what’s left to me and try and manage the symptoms as best as I can.” And that’s, I feel like that’s, that’s not to say that I don’t, I don’t sometimes have regrets or feel cross about it, but I feel for me that’s the right thing to do.

 

Can you just remind me what a phase 1 trial is?

 

A phase 1 trial is really where they’re trying to check out the toxicity of the drug. They’re not, they know that it works in some way but they’re not absolutely sure about the effect that it will have. But some of these PARPs as they’re called have been found to prevent, well, to make some of the recurrences disappear, in prostate cancer particularly, and breast cancer, where there’s a genetic element. And they think there might be a genetic element for me.

 

Ann felt very ill with each infusion of gemcitabine. She tried various anti-nausea drugs but these had bad side effects too. Nabilone helped a bit.

And during that time [when having chemotherapy] your mood is quite different from your mood when you’re feeling better?

 

Yes, completely different. And interestingly the pattern seems to be that the first few days I just feel dreadful, not depressed but just awful and nauseated and I do, am sick sometimes and just feel rotten. And then on the third day, by the evening, I start to get really quite depressed, tearful, and it’s like a physical thing on the third day in the evening that’s how I seem to get, that I can’t think I’ll ever get out of this, don’t know what to do with myself, the future seems very black, I am definitely going to die soon, I don’t really care about that but I just feel, just depressed. And interestingly by the next morning or lunchtime when I’m starting to feel better, all that depression’s gone and I’m happy to get up and do things and go swimming and just be very active again. And don’t feel that sort of depression, like a black cloud that comes, that people often describe when they’re depressed, that seems to come over me, for that evening, the third evening after the chemo.

 

You talked about having Nabilone, that was just the last time, wasn’t it?

 

Yes.

 

Another anti-, side effect …

 

Yes

 

...of the drug, to begin with?

 

The thing is that I have tried a lot of the anti-nausea drugs and most of them give me side effects, make me agitated or Parkinsonian or feel, feeling dreadful. There’s one called Ondansetron which has fewer of those side effects but interestingly this last, the first two times I had the chemo I had it intravenously, with the chemotherapy. The last time, the third time I had the chemo I took, took it as instructed three or four hours before, by mouth and I was already getting side effects from that, which I had put down to the chemotherapy, stomach gripes, feeling just a bit heady and not very well, obviously from the Ondansetron. So it’s a bit of a balance as to whether you take, whether I take that, Ondansetron to stop me feeling sick, which doesn’t completely work at all, but gives me other side effects, or not. And so we decided to try the Nabilone, which is a cannabis type chemical, because last time when I had breast cancer that did seem to be one of the things that helped. 

 

I was rather disappointed that made me feel so knocked out and just woozy, but it, I, in a way, anything is better than vomiting and nausea. So I’m, certainly next time I’ll take it for two days. It just seems when it’s every week, having, feeling ill for three and a half, four days every week, it, it seems that you’ve only just half recovered when you’re onto the next one. And for me I don’t think I could do that for six months. But if, you know, if you don’t get bad side effects, obviously that’s a very different story and I think different people do react very differently to these drugs.

 

The recovery from Whipple's operation was one of the worst experiences of Ann's life. The nausea was so bad that she wanted to die.

And then of course I got to the ward and was given a bed in this four-bedder by the window, and had to sign consent forms. Which always brings one up with a bit, quite a bit of a start when they start telling you the actual figures, that I didn’t really want to know, how likely I was to die from the anaesthetic or from the operation. And off I went. And five hours later, because apparently the operation took five hours, five or six hours, and I woke up with a terrible nasogastric tube, feeling like hell really, although quite relieved to be alive. And my family were all there and, I mean they were obviously very relieved to see me alive too [laugh].

 

But the next two weeks were just terrible. And I was in hospital for three and a half weeks, not the fourteen days which I thought I would be, at the, when I first went in. And I really hadn’t entertained the fact that I’d be so ill. And I, there were many times during those two, first two weeks particularly that (a) I wanted to die. I didn’t feel depressed about it, but just felt so ill I didn’t want to be there. I was retching and nauseated and I, certainly not everybody was in the ward because, but there was quite a lot of that going on and people feeling not at all well. And I couldn’t take any, many of the drugs to stop me vomiting and retching and feeling nauseated because I got side effects from them. I mainly had sort of Parkinsonian side effects, where I was shaking and just not… feeling terrible; agitated. And so it was very difficult for me not to feel nauseated. And I didn’t eat anything or drink anything really for, for two weeks. I had a drip in. And it’s a very funny sensation to feel you want to die even though you’re not depressed, and something I’ve never experienced before. And, you know, you’d go to sleep for a little bit, because I hardly slept, and think, “Well, at least tomorrow I’ll feel a little bit better when I wake up.” And then you’d wake up and not feel any better. And it’s very difficult to describe, and I can’t almost remember where those days went to. I’m sure it’s just as well. It’s rather like having a baby, when you, there’s a lot of pain, you actually somehow forget about it. You know, you say, at the time you hear people saying, and I’m sure I said it, “I’m never going to do this again.” And then, you know, two or three years later you’ll have another baby, and as the pain starts you remember how awful it was the last time. [laugh] And I quite frequently felt, “Gosh, I just wish I hadn’t done this operation. I wished I’d...” That’s when I really felt I’d rather just have seen what happened. And that wasn’t my rational self speaking, but it was just how I felt really. 

 

When the surgeon told Ann that she could have Whipple's operation she thought there was no other option. She didn't want a second opinion.

Did you at any point, then, consider that there wasn’t, because you were very well, and had just had this terrific walking holiday, did you ever think, “Why do I let myself in for this operation?”

 

Not at that stage. I just didn’t think there was an option. I knew that most pancreatic cancers present very late with painless jaundice and they can’t operate. I mean the, in fact the gastroenterologist said, “You know, you’re one of the lucky 10 or 20 per cent because ...” I don’t know that I felt lucky but…. “Because it’s operable and it looks to be very small.” At that stage they were thinking it was about 0.8 centimetres. In fact it turned out to be 2 centimetres. But, and I mean they were saying, you know, “It’s operable. It could be curable.” Although I didn’t quite believe that, and I’m not sure I do yet. And, you know, it’s got such a, and there was, there seemed to be no other option really. 

 

And I didn’t want a second opinion, and I didn’t want to know more about the operation than I already knew. I really, I didn’t want to know more. I just wanted someone to look after me and make the decisions at that stage, and tell me what to do. I suppose I knew enough to know that it was not going to be nice, and I didn’t want to know more than that really.

 

Ann found it hard to tell her adult children that her cancer had come back. She felt that she had failed in some way as a mother and felt a sense of guilt.

I mean it’s interesting. I got the diagnosis on a Thursday, and all the children were meant to be coming and were coming at the weekend for a so-called fun run. I’m not sure they saw it as a fun run, because they had to run 10 kilometres, but it’s become an annual event. And so I didn’t really tell anyone apart from my husband and one or two other very close friends before that, because I wanted to tell the children. And I didn’t tell them until after the fun run. And after lunch I said to my three, or the other, they’re all married and got, two of them have got children, I wanted to just have a word with them. And of course the minute I said something and we were going, trying to find a room in the house where there wasn’t another child, or grandchild, they knew something was up. And I found it really difficult. Because I think one of the things about getting ill again is you, you know, you feel a failure in a way. You feel, it’s not that I feel I didn’t think my cancer away enough, because I don’t go along with all that. But you do feel you’re putting on others something which is awful for them to bear if it’s your children. And you feel you’ve failed in some way. I suppose one of the things is one’s f-, for me one of the important things about family life has been to try and make them happy, my sort of Jewish guilt of wanting them to be all right. And somehow to be, you know, breast cancer, pancreatic cancer, recurrence of pancreatic cancer, you think, “Golly, you know, this is more than they should have to deal with, at this stage in their lives.” And so I felt terrible. But I, that bit was all right. I think it’s the realisation now, when one, talking to one on the phone or I, it suddenly catches me and catches them, that I feel, well, sad really, really sad, not depressed. And there is a big difference. Just really sad that I won’t see the grandchildren grow up.

Ann heard the diagnosis while she was on a train. She had already had breast cancer and could hardly believe the news that she had pancreatic cancer.

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-, cancer” 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.

 

Ann had a colonoscopy and an endoscopy

And did you feel quite well otherwise?

 

I felt completely well. I was eating properly, nothing, no pain nothing. And the blood tests all came back completely normal. But I saw the gastroenterologist, who I knew reasonably well because I’d referred a lot of patients to him in the past. And, but when I told him the story he took it very seriously and said, “We ought to check a stool specimen for, check a stool specimen for blood but also for some enzymes”, and I ought to have a CT scan, an ultrasound scan. And he arranged all that. 

 

At this moment, did you know what he was thinking?

 

No.

 

Were you, I seem to remember you thought that you might have bowel cancer?

 

Yes, I thought it was bowel cancer.

 

Did it ever cross your mind that this was pancreatic?

 

No, absolutely, it never crossed my mind what his final diagnosis was. Now I, it must have crossed his mind to a certain extent because he wanted the stool specimen examined not just for blood. Which as a GP I wouldn’t have normally. I would have done it for blood, but for nothing, not for anything else. But I suppose because I said they [stools] were a slightly different consistency and slightly fatty. But I certainly wasn’t thinking pancreatic at all. And he was obviously thinking bowel cancer too, because he arranged for me to have a colonoscopy, which, you know, a tube, where the little camera looks up your bowel. And so he arranged that. But before I had it he rang me and said, “The stool specimen which...” I mean I took a stool specimen, which I forgot to hand in. So I had to then, three days later I found it in my bag and had to do another one, which was slightly embarrassing. He rang and said, “Look, the stool specimen does show that one of the enzymes is wrong, two of the enzymes are wrong, and therefore we ought to do an endoscopy at the same time as the colonoscopy.”

 

I wasn’t feeling anxious or worried this time, although taking the preparation for the, for the colonoscopy is pretty horrible. You have to drink the, this salty solution, rather a lot of it, and then the whole of your insides just get cleaned out. So you, I had to take the day off work before so that I could be on the loo most of the time. And it’s really very unpleasant. And I think most people, most people you talk to who’ve had it say it’s much more unpleasant than the colonoscopy itself.

 

Ann noticed that she was opening her bowels five or six times a day and that her faeces floated. She also had a metallic taste in her mouth.

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 diarrhoea” 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.

 

About a month after Ann had a recurrence she needed liquid morphine (Oramorph). It helped to control pain, but larger doses caused nausea.

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.

 

After her operation Ann's family and friends recognised that her husband needed support too. She liked having him there all the time but did not want to let her illness dominate their lives.

My husband has been fantastic and my family have been fantastic. My husband has even started to cook. And it’s those sorts of things which make an enormous difference as to how you feel, especially when you’re feeling, “Golly, how long is this going to go on for?” I think having something like this makes you think about all sorts of things that you value in life really, and what’s important. 

 

I mean I think it’s very, very difficult for the carer or the partner or my husband, because a) everyone’s concentrating on me. But actually people have been very good and brought food round for him, brought meals round for him, you know, mushy fish for me and a rather nice meal for him. But I also worry that, you know, I used, we had a rather conventional way of running our household in a sense in that I did the cooking and he did some of the other things. And of course that’s changed to a certain extent. But I think it’s quite tough for, for the carer. 

 

And I think also, I think a lot of men find it quite difficult to talk about these things emotionally. And he has been terrific in supporting me in a way that I didn’t expect him to be so good actually. Because I don’t think, you know, no one likes illness but I think it is, I’ve been the one who does the looking after or tended to. And I think having kind of come from a family where all the women lived for a very old age, I always expected to be the one who would be living to their 90s. And to find myself needing the looking after, I found, it’s a funny role to be in when I hadn’t expected to be like that. 

 

But I think, I think it’s important that the carer does have some space, and I do encourage him to try. Like at the moment he’s gone off to a conference in America. And it’s, at one level I liked him to be here all the time because I want someone here, but I don’t want, at the same time I feel it’s really important that life goes on for everybody else. And you’re more able to care if, and be supportive if you also have your own life going on. And I think different people will manage it in different ways. I mean we don’t talk about my illness all the time at all, but it’s very good to be able to talk about it to other people, to one or two close friends.