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.

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.

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.

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.

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.

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.

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.

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.