David – Interview 09

David first had symptoms in December 2003. He was diagnosed with pancreatic cancer in 2004. He had a Whipple’s operation, followed by chemotherapy and radiotherapy. In 2010 his cancer came back. Doctors told him that he has weeks or months to live.

David first noticed symptoms just before Christmas 2003. He felt tired, his pee was the colour of tea, his eyes were yellow, and he felt sick. His poo had changed colour and was greasy. He went to his GP, who sent him to the local hospital. Gradually he felt worse and started to itch all over. He felt sick and was very worried.

David had an ultrasound scan. In the January, he had a stent put into his bile duct so that the bile could flow more easily. This was done through an endoscope. David had a sedative for this procedure.

David was told that he should go to a specialist hospital for more treatment. A doctor had told him that he might have pancreatitis or possibly cancer. When he arrived at the specialist hospital, he realised that he was in a hospital for cancer patients, which was rather a shock. He had a CT scan and was then told that he should have a Whipple’s operation. David felt extremely worried.

The surgery took place later that month. The surgery went well even though the surgeon had nicked the aorta and David had needed a lot of blood. David found that the intensive care ward was very noisy, and he had nightmares at times. He had drips, drains and a catheter. David was in the intensive care unit for a few days and then moved back to the ward.

His pain was well controlled with an epidural. Later, when that was removed, he had a morphine pump. He developed an infection so had to have intravenous antibiotics. David felt that he had been well looked after in hospital, but that there was a lack of continuity of care. He saw too many different doctors, who said different things and sometimes the opposite to what others had said.

During the surgery the surgeon took a biopsy, and he was able to confirm that David did have pancreatic cancer. David stayed in hospital until the beginning of March. It was lovely to go home and get back to a normal life. The district nurse called frequently to dress his incision, which had been infected at one end.

In April 2004 he had chemotherapy, just in case any cancer cells remained. He took part in a clinical trial called the ESPAC-3 trial and was given Adjuvant 5-FU as part of that trial. David had cycles of this chemotherapy for six months. At times he felt sick and unwell.

David was able to return to work in September 2004, soon after the last cycle of chemotherapy. His employer and work colleagues were all very supportive. For a couple of years he felt very well. He ate well, put weight on and enjoyed cycling and social life as well as his work. He saw the surgeon every three months for follow up.

In December 2006 David started to feel nauseous and unwell. He went back to the hospital for a check-up. However, the CT scan looked normal and his blood appeared to be normal too. David started to have diarrhoea and he lost a lot of weight. Eventually David had a private consultation with a gastro-enterologist at his local hospital. He had tests and was referred to the oncology department, where he was told that his cancer had probably come back. The doctor assumed this after looking at a CT scan. David went back to the specialist hospital, where he had a PET scan. This confirmed that there had been a recurrence. David was relieved in some ways because at last there was a reason for his ill health.

In early 2008 David was offered the chance to go on a chemotherapy clinical trial which involved gemcitabine, capecitabine and erlotinib. David went on to this trial but suffered some side effects. He had some bleeding from his bottom and vomited blood on one occasion. Now he has terrible memories of chemotherapy. It makes him feel sick just to think about it.

In January 2009 David started radiotherapy. He had 28 cycles of radiotherapy, Monday to Friday with weekends off. He did not experience any serious side effects from that. He just felt a bit tired at times, but he thought that may have been partly due to all the travelling he had to do to get to the radiotherapy.

In September 2009 David started having some pain and discomfort. The CT scan did not show any real changes, but in February 2010 a blood test showed that the tumour markers had risen. Another CT scan showed that the cancer had spread to the pelvis.

David is now working with the Macmillan team. He controls the pain using hot water bottles, and morphine. He has also tried some breathing techniques, which help reduce the pain.

David has been told that he only has weeks or months to live, which is shocking news. He has been to the local hospice to discuss palliative care and the future management of his condition. He likes the hospice and has confidence in the staff but feels sad and weepy and very emotional at times because of what is happening. He has been given some antidepressants, which he has decided to try. David would like to stay at home for as long as possible and then move to the hospice.

David has had tremendous support from his family, friends and colleagues. His employer has also given him great help and support at all times. He has had tremendous support from the Macmillan team and he has also found help via complementary therapies such as reflexology. He takes Creon to help him digest his food.

Doctors have suggested that David should have more chemotherapy, but he does not think that it’s a good idea. He would rather enjoy the life that he has left, rather than suffer chemotherapy again for the chance of an extra couple of months.

We spoke to David in 2010

David felt angry because his doctors did not seem to take his symptoms seriously. He was relieved…

Age at interview 45

Gender Male

Age at diagnosis 38

We were talking about the fact that, we were talking about the fact that you were told there had been a recurrence.

Yes.

What was your reaction to getting that news?

Relief really because for a year I’d been sort of saying Look, there’s something not right. I’m losing weight, I’ve got nausea, I’ve got diarrhoea And again at one point I even went to my local GP, because I didn’t know where to turn to, no-one was sort of, seemed to be listening to me. And my local doctor basically sort of more politely offered me psychiatric care. Is that the right word? Counselling? Holistic, an holistic approach, Maybe it’s in your mind, and it’s mind over matte. And that just, ah, I was, didn’t openly say it but I was absolutely fuming.

Because in my mind, in my mind I knew it was there and I thought, Oh well this is my seventh year, I’m a seven year survivo and I think one of the reasons why I, I’ve been here so long is I seem to present symptoms very, very quickly, like when the original tumour came, it was a very small tumour, which blocked the bile duct, which caused the jaundice which then flagged up the tumour.

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David had no financial problems his great employer continued to pay him when he was sick.

Age at interview 45

Gender Male

Age at diagnosis 38

My work were very good, unbelievably good, and as I say as a police officer now I can’t well I work for the Met and I’ve got to give them big praise that from a local level, from my team mates, through to my managers, through to senior management
So financially you were still being paid and everything?

Being paid, and being very well supported.

Good.

Unbelief, and that’s such a difference, up until this day and I’m sure it will continue, I mean that has never been an issue, the welfare side they have been unbelievable, remarkable.

Okay, so you finished your chemotherapy trial?

Yes.

And then you went back to work?

Yeah I went back to work; I think it was like September 14th I went back to work. Again prior to that through the police I’d had consultation with our occupational health, we’d devised a return to work plan, which involved reduced hours building up to when I go back full time. So initially I think it was only maybe one or two hours a day for the first week and then building up to my return. I can’t remember what it was when I worked full hours.

I’ve not had issues with finance.

With what?

Finance, and the money side. I you know, I’ve had a great employer and again I want to reinforce that. That makes it; I would imagine that makes such a big difference. And use your employer. You know a lot of people where I work, frown on occupational health. They see them as being intrusive. And I’ve worked with them and they’ve worked with me and they’ve helped me. So you know, use the support that’s given, if you are working, that’s given to you. And it’s amazing what they can and will help you with.

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The Macmillan nurses helped to co-ordinate services and helped with pain control. David also used…

Age at interview 45

Gender Male

Age at diagnosis 38

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.

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David was cross to be told different things by different doctors. He challenged contradictory…

Age at interview 45

Gender Male

Age at diagnosis 38

The other thing with the doctors there is you see different doctors at different times. And different doctors tell you different things. And as a patient, especially with my wife, my wife being there too, is you listen to every part, and I believe you digest it fairly well. And that you also have to deal with the contradiction that you do get, although it’s not great you know there is contradiction and one will say one thing and one will say something another. And a lot of times you’ll, you’ll challenge it.

But it, but again it, I think probably throughout the whole of this that that’s gone on, continuity of physicians I would argue is one of the biggest things that I would have a gripe about. That trying to get a continuous line of care from the same person, to me is very, very important.

Do you remember any specific contradictions that made you concerned?

Just about well, in the hospital, I think there was various drains, and just different doctors, probably, I remember one on-call doctor came in who had a totally different consideration to the surgeon who had carried out the procedure; he wanted to do one thing with the drains which was totally contrary to what the surgeon wanted to do.

And again on, on the, on the weekend it’s kind of, its, even though you’re in hospital everything seems to close down, and like Saturday and Sunday it’s just like a holding area, and nothing seems to get done unless it’s a real emergency.

And in those times, that’s when you tend to see the people, they aren’t the regular staff, I don’t know how they get, whether they come in here as an extra pay, but it was that, that was the typical time you would see the most contradiction, on the weekend.

And that was worrying?

Yes, it’s worrying, and again annoying. Again and I can relate back to what I do for an occupation. They do it every day of their life. they’re talking major surgery, that obviously if you work in a cancer hospital you talk about cancer. But to you its, everything’s new, and you’re listening to it for the very first time. And then you digest it, and that’s where it upsets you I think.

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After the cancer recurred, David took part in a trial that involved the drugs gemcitabine…

Age at interview 45

Gender Male

Age at diagnosis 38

It recurred the first time in 2006 didn’t it?

Yeah, I had the first symptoms presented in December 2006. Went to see the specialist hospital, or then spent almost a year trying to get it sorted out. So I spent 2007/2008 eventually, after the PET scan. I think it was about early 2008 then basically I was offered a medical trial which involved gemcitabine and capecitabine, Erlotinib and a further other drug. Two were blood drugs; two were the regular chemo drugs on the medical trial. The chemo drugs doing the regular thing, and the other drugs dealing with the supply of blood to the tumours. And it was hard,

What were those other drugs called?

One was Erlotinib, and I can’t remember what the, I can’t remember the fourth drug that I took, but there were two trials, in, in the medical trial. I just can’t recall the other name. So I agreed to that. And I went on their trial I think spring 2008, a six month trial. Went on it with the view that after that I’d do chemoradiation, after the chemo, after the medical trial.

Went into that, that was a lot harder the second time doing chemotherapy. Went through the first trial, or the first cycle okay. Second cycle, that’s it finished. I had a major bleed. Basically started to pass blood in my, in, when I went to the toilet, and as a result of that presented myself at A&E.

And in the A&E was admitted to the ward, again, eventually got through, I think we went to the hospital about 10 o’clock, got to the ward in the early hours, about, very early, about six in the morning. Basically I said I didn’t feel good, needed to go to the toilet. Went to the toilet had a major bleed in the toilet, collapsed inside the toilet and fortunately rang the emergency bell in the toilet and I had a major bleed in the toilet.

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For two years after treatment David felt well, and he went back to work. Then he developed…

Age at interview 45

Gender Male

Age at diagnosis 38

So what happened after that?

Well I returned to work fighting strong really. The chemo had finished, went back to the hospital had a scan, the scan came back clear. Everyone was hugging each other.

It was all over kind of. And I worked for, well when I first felt unwell again it were just December, late December 2007, or was it, 2006. I was working, overseas doing some training, and for the first time just felt a slight nauseous, and just a change in my body which wasn’t usual. Just didn’t feel right.

But from September 2004 to December 2006 brilliant, just normal life again. Fortunately put loads of weight back on. Went up to about fourteen and a half stone, became a big guy as I was before this all had occurred. But I always used to say I was a big fat guy who was fit. I was fighting fit. I had a, I have a mountain bike, was riding the bike, eating well, working well, enjoyed a good sociable drink. I don’t think I ever drank to excess.

I even did some good operational police work. Everything was fine. And the view was very much is every three months I went back for an appointment the longer I got away from the surgery date the greater or the better the prognosis was. So I kind of thought I was out of the woods really.

Did you have a CT scan every time you went back?

I had CT scan I think was every other, so about every six months I’d have a CT scan. But the clinic appointments were just arbitrary, I’d just go along, they’d say, sort of say nothing. CT scan’s fine. I’d say I feel fine, see you in, see you in three months; and you know it was almost like why do I need to come here?

Right up until I felt the change in December 2006.

And then what happened?

December 2006, as I say, for the very first time I can remember driving the car back from the base training, and just felt nauseous, didn’t want my tea. I didn’t want to eat which again for a guy that loved food was out of character.

Went through the trip, came back, I remember had the Christmas, I remember speaking to my wife saying that things aren’t right here and I got a little bit upset because again I think I felt possibly that there was a reoccurrence of the, the illness. Straight after Christmas got in contact with the specialist hospital and had an appointment.

They booked a CT scan, the scan didn’t show anything. The blood tumour marker the 19-9 which is the cancer marker for pancreatic cancer didn’t show anything.

And then I spent well over a year going back to the hospital, saying, I don’t feel well. I started to get terrible diarrhoea, at that time it was diarrhoea where very little notice from the feeling of needing to go to the toilet to going to the toilet would be sometimes a minute, two minutes. I couldn’t get to work very well because sometimes I’d need the toilet on the way to work. And then literally I’d have to find different toilets on the way so that if I did need to go I could divert.

And, and didn’t, well I wasn’t happy really. Losing weight, every time I went back to the hospital I was losing weight at quite a dramatic rate and saying to the hospital there will come a point where I can’t lose much more weight it will become critical. Luckily because I was a big guy there was quite a bit to go. I mean now I’m nine and a half stone.

Eventually we decided to go private. So I went to the local hospital, back to the original physician that I saw who had given me an indicator of what he thought it was. Saw him. He ran a series of tests and did a CT scan.

And then out of the blue a letter arrived from the oncology unit at the local hospital for an appointment. I went to that appointment, and again you know when you’re sat in an oncology department waiting to see a doctor that there’s only one thing that they’re going to tell you. I went to see the doctor, and he said there was a re-occurrence of the disease.

How did they know that?

I think from the CT scan predominantly. That, I think and again I don’t, I’m not a radiologist. I think what is and has and always will be is there’s lots of, obviously through the surgery, there’s lots of scar tissue. And that area is very unusual because of the level of surgery that has been done. I’ve got no duodenum, and the level of surgery that’s been done. But it is, is using, it was his interpretation, he believed that there had been a, been a re-occurrence and he offered to put me back on chemotherapy.

I discussed it with my wife. We felt the hospital that we’d been under although it, though we didn’t, weren’t happy with them, we felt they had the best options available so we asked, and which they kind of did at the, at the hospital, they said, We’ll collect the file, the scans, all his diagnosis, took it back to the specialist hospital, presented it to them. They then conducted a PET scan, which is a scan basically where they do a CT scan with I think they’d use radioactive glucose which basically creates hot spots, and the centre to which the doctor had picked up was shown as a hot spot.

And then the specialist hospital, my original hospital then basically at that point then agreed that there had been a recurrence.

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David had serious side effects from chemotherapy. The thought of the treatment made him feel sick…

Age at interview 45

Gender Male

Age at diagnosis 38

The last cycle was cancelled. I vomited, just before I was due to have treatment, and in my vomit there was blood. And again they stopped the last cycle there. So I think I had four out of the six.

And you were not working during this time?

No. I didn’t work. Oh I thought initially I would, I thought I’d be well enough after doing a couple of cycles that I’d probably return to work. But the second time was a lot harder, harder to tolerate, in the end, and again harder to tolerate in my mind. I started to get a fear of going to the hospital. I started to feel very, very sick on the way there, on the last couple of occasions. Literally as I’d get out of the car I’d be sick before I’d get into the chemo room. Again they have chemo, sometimes even now certain smells, I’ve got, there’s something in the bathroom, soap, one of the soaps reminds me of the chemotherapy. Even the nurses, even going to that particular floor in the hospital just takes me back. The other day I had to go for a blood test, out of hours. I had to go to the chemo room and again that’ll upset me. I do really now find it hard, in my head getting around the chemotherapy. I call it the juice.

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David was unsure of his diagnosis so was shocked to find himself in a hospital that specialised…

Age at interview 45

Gender Male

Age at diagnosis 38

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

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

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

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David found the intensive care unit very noisy. He found it hard to sleep and had nightmares. The…

Age at interview 45

Gender Male

Age at diagnosis 38

Again it was difficult in the intensive care unit, because I was conscious throughout, and strange places, intensive care units. Especially being awake because it’s very, very noisy, so noisy, there were six bays there and you’ve got a nurse, one to one on you. And you’ve got the consultant who’s in, and the anaesthetist.

And you’ve got the tube into your neck, but, more noisy at night when you go to sleep, the noise seems to get tenfold more noisy. But it isn’t, it’s just I think your ears become more attuned to the noise, so I couldn’t, I just couldn’t sleep very well. And when I did sleep I had terrible nightmares.

Did you?

Yes and I think again, it’s probably, that was probably the effect of the anaesthetic. Again I did see the surgeon the day afterwards. The surgery it had gone well, although it was described that I’d had a small bleed, they’d nicked the aorta, which on reflection and looking back now, obviously there’d been a point in surgery where it had been manic, and I think I’d had I don’t know how many units of blood, but it had taken some while to bring that back under control. So again I think the pancreas is wrapped around the aorta.

Yes, intensive care was hard, it really was hard again. The physio team were, I guess were very good. And again I think more modern nursing that, on the first day after surgery I was out of bed, and they got me up on my feet and I wouldn’t say got me walking. I couldn’t walk. It, it was just, I felt like 150 years old, and that walking one step was like walking the first step on the moon. It was just unbelievable; I just, as if somebody had sucked every piece of energy out of you.

And then, what I thought I’d do then is to give Cathy a treat, make her see I was well, I said to them, don’t put me back in bed yet, put me in the chair beside the bed. And then when Cathy comes to see me she’ll see me out of bed and it will give her a boost

What I didn’t realise was she was going to be three hours late. And I stayed in the chair. When she arrived I’d slid down the chair, and I was literally knocked out. But I stayed there until she arrived and then I got back in bed and I think I did go to sleep.

it’s just kinds of things you do.

How long were you in intensive care?

I think five days, I think I was in there a little bit longer because I think I did the, through the surgery date. I think I had the surgery on either the Wednesday or the Thursday. And then they don’t tend to do many operations on a, on a week, well they don’t do operations on a weekend, unless it’s an emergency. So once I was in there the weekend went by, whereas otherwise, I would have come out earlier if it had been five working days so to speak.

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David had reflexology at the hospice. He also learnt breathing exercises and visualised being in…

Age at interview 45

Gender Male

Age at diagnosis 38

Have you ever used any complementary therapies?

Yes, when I had the referral with the, with the Macmillan team it was discussed. One thing I used to enjoy, and did till recently, was I had massages. A lady used to come to the house, and my wife would have one too.

But it, that apparently isn’t good for you, in that, in that it can, the massage can assist with, with spreading the illness. So as a result of their advice we didn’t do that, and what Macmillan did do, is talk about other alternative therapies that they do. And I’ve been to meet the, the team there, discussed what, what things they can do, and I’ve had some reflexology which I do find very comforting, very soothing, and it gives you a time out.

And again during those sessions, and I can’t believe it, big burly detective for 20 years, I did some breathing techniques, and some techniques to use if you can’t sleep or if you’re in pain. And they do work. And I thought, you know, this is like baloney, in one ear out the other ear, but a couple of occasions since, when I have had back pain, I’ve used that technique and it has assisted in reduce; especially breathing, the way that you breathe, not by taking deeper breaths, that you can reduce the pain a lot.

Who taught you that?

The lady who does the alternative therapies. Whilst we were doing the reflexology she would discuss with you, with the first session I did we discussed generally breathing, and breathing techniques to assist in pain. On the second occasion we introduced the technique where you kind of, enter a wood and walk through the wood, and go and find a house, and go to the house and you’re inside the house, as a way to take yourself out of a situation.

So it’s visualisation?

Yes. I don’t know what the technique is called, but yes. I visualise it, literally as a technique to sometimes take you to a more calming place and try and change your demeanour. Is demeanor the right word?

Does she come here for that?

No I go to the hospice centre.

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