Vicky - Interview 15

Age at interview: 55

Age at diagnosis: 53

Brief Outline:

Vicky was diagnosed with pancreatic cancer in 2007. She had a neuroendocrine tumour which is rare. She had a Whipple's operation and then radiofrequency ablation to treat small lesions in her liver. She feels well but knows the lesions may increase in size.

Background:

Vicky is a bookkeeper (now retired). She is married. Ethnic background/ Nationality: White British.

More about me...

Vicky first had symptoms in May 2007. She felt faint at times and found it hard to walk up hill. She also looked pale. Her GP prescribed iron tablets and decided to investigate further. Vicky had a colonoscopy, which showed that her bowel was fine, and she also had an endoscopy. Then in July she had a CT scan which showed a lump on her pancreas. This was a rare condition, a neuroendocrine tumour, which had developed its own blood supply.

 

A few weeks later, the surgeon tried to put in a stent to keep an important blood vessel (the coeliac artery) open, before he could attempt a Whipple’s operation. This was no successful, so Vicky was discharged from hospital. In October doctors tried to insert a stent once more, this time via an artery in her arm. During this time Vicky had numerous CT scans. 

 

The doctors also did an embolisation procedure to try to reduce the blood supply to the tumour. They did this while Vicky was awake, in the radiology department. A line was inserted via her groin. This procedure was quite uncomfortable and Vicky had pain in her shoulder afterwards. The embolisation was partially successful and Vicky was re-admitted to hospital so that the Whipple’s operation could take place the next day. 

 

After the Whipple’s operation Vicky was in the high dependency unit for a few days before she moved to a ward. She was unable to poo for a long time, which was worrying. In mid December Vicky was still receiving intravenous fluids. Vicky went home just before Christmas. She was eating a little but still being fed via a JPEG tube into her small intestine at the same time.

 

This JPEG tube was removed in January 2008, but when it was removed part of the intestine was torn so Vicky had to be admitted to hospital and lie as still as possible so that the tear could heal. She had to be fed intravenously again for a while.

 

Vicky recovered and went home. In February 2008 she had a CT scan which showed that she had some lesions on her liver. She was told that some of the lesions could be removed using radio-frequency ablation, so she was admitted to hospital once more. The first radio-frequency ablation was in May 2008. This went well. Vicky had a second treatment in June, but suffered hypothermia and was discharged with a nagging pain in the liver area. She was readmitted to hospital with an abscess in her liver, which had to be drained. A fortnight later she had to go back in to hospital as the abscess was still causing problems. A second drain was inserted. Vicky went home with her abscess drain. This was removed in August 2008, a year after all her treatment had started.

 

Vicky then started seeing a more local consultant who specialised in liver disease. In November 2008 she had a scan and after that the doctor told her that she had multiple lesions on her liver. This was very depressing news. The doctor referred Vicky to an oncologist. Another scan in March 2009 suggested that the lesions had not grown, so the oncologist decided not to start chemotherapy. In October 2009 Vicky had another scan, which showed that the lesions had grown a bit, and the doctor considered starting chemotherapy. However, another scan in January 2010 found that the lesions had not grown again, so the doctor cancelled the chemotherapy course. 

 

Vicky was due to have an MRI scan in about three months after we spoke to her. Now Vicky is feeling quite well. She takes Creon and lansoprazole to help with digestion. She still gets pain in her food pipe from time to time, which is a side effect of the Whipple’s operation. She feels almost back to normal and does as much as possible because she is aware that she could become ill again at any time.

 

We spoke to Vicky in 2010

 

Vicky had an embolisation procedure two weeks before her Whipple's operation. She described what happened in the radiology department.

Then I was re-admitted on the 25th September. And that’s when they did the embolisation, and the embolisation cuts off, it’s done in the radiology department, it cuts off blood supply. So what they were trying to do with all these different sort of procedures was to try and reduce the amount of blood supply that had created round, round the lump so that when they came to take it out you know there was the, you know there was least chance of sort of haemorrhaging and things.

 

Can you say a little bit more about embolisation? What happened exactly?

 

Yes, embolisation. You’re under a, it’s not a general anaesthetic it’s a sort of local anaesthetic, only it’s in, done in the radiology department. And as far as I know they insert this, insert a very fine wire somewhere into your groin, well this when they, it’s the first time they attempted it in the groin. And that goes up, and they, they sort of zap, they zap, can zap things. And it cuts the, sort of cuts the blood supply off. That’s, that’s what I understand it to be.

 

And how did you feel while that was going on?

 

You’re slightly aware, and it was quite painful, quite painful afterwards.

 

Where was the pain? In the, was it around the pancreas or where they inserted the line?

 

No it wasn’t round the pancreas, it was sort of slightly round the line, and then 

 

In the groin?

 

In the groin. And, I’m so sorry I’m having trouble sort of remembering it. But, there is a sort of quite important, sort of relevant thing. I remember being home one time after having been discharged and I had this awful pain in my shoulder. And apparently I luckily had a neighbour who was a radiologist and she, “I wouldn’t in the least be surprised by that. If you’ve been embolised, if they’ve been embolising around the pancreas liver area.” Which was…

 

That was useful to know?

 

That was useful to know yes.

 

Vicky had to go home with a JPEG tube still in place because her bowel was not working properly. She had some of her food through the tube.

I was having quite a lot of problem after the operation, and they were having to, I, obviously my digestive system wasn’t working. My bladder started working quite well, that started working okay quite soon, and yes the catheter came out and I had no problem on the bladder side. But... so bowel movements. That was a real problem with me, well I’ve always actually had bowel problems.

 

 

So how many days was it before you could start sipping water for example?

 

 

You were allowed to sip a little bit of water, but you were limited, because of course if, if the stomach’s not working properly they don’t want to sort of fill you up. But then you’ve got to have a certain amount.

 

 

How long did it take for you?

 

 

So three and a half, my operation was on November 13^th and it was sort of coming up to you know mid-December and I was still [in hospital].

 

 

Goodness

 

 

I was still, well they weren’t getting anywhere.

 

 

So you weren’t eating anything all this time?

 

 

So I wasn’t eating anything. I was being fed intravenously.

 

 

And I think after about four weeks, my consultant, I think, began to get slightly worried that, that something hadn’t, you know, was wrong and scanned me, but there was absolutely nothing on the scan to show. And apparently I think they’d quoted two or three percent of people have problems. And I was obviously one of them, and they call it, delayed gastro, delayed, oh, not again, delayed gastro something. And it can happen to about 2 percent of people who have, who have the Whipple operation.

 

 

And so they said, they’d try; they got me to chew chewing gum which sometimes can help. Exercise, so I used to walk, you know, walk round, round and round the corridors endlessly, sipping water, and then the doctor, the doctors you know, they just had to come along and say, “Be patient,” and I, you know it was incredibly frustrating and of course I was getting completely desperate because you know I wanted to get out of hospital, and you know I was wondering was it ever going to, you know was it actually ever going to get right.

 

 

And we were creeping up to Christmas. And my consultant said, “Well look,” you know I was mobile by then, and by then my bowels had started working, but I was,, and he said, “Right, I’m just going to send you home with all the kit.” And my husband became an expert on intravenous pumps.

 

 

All that, were, you still couldn’t eat, even though your bowel had started?

 

 

I still couldn’t eat, I couldn’t, couldn’t still, no because you see I, this sort of, the food you’re given is a sort of thick porridge like stuff, so you weren’t having many bowel movements, but I mean they, they did work, you know occasionally. And I was sent home.

 

 

Were you eating by mouth then?

 

 

They occasionally, I had a little bit of soup or a little bit of jelly, but nothing, no. You’ve reminded me. I would have the pump, the food pump on, I can’t remember the actual timing, for part of the 24 hours, and then it would be switched off, and then I would try and eat sort of small soft things.

 

Before each meal Vicky has to estimate how much Creon she would need to digest the fats. She doesn't always get it right.

I’m on obviously quite, I’m still on medication, which I will be on for life, for the pancreas, and my digestion is pretty good, but again if you get your pills, I think it’s a matter of getting the pills, taking the right amount of pills, you can suddenly have a day when you have really bad diarrhoea for half a day, and you feel completely washed out. So, you know you just have to write off a day. So, but apart from that…

 

What pills are you taking?

 

I’m on Creon, which is, that’s for the digestion, because having had a large part of the pancreas removed I can’t, as far as I understand I can’t digest fat. The pancreas digests the fat for you. So the pancreas is not producing the enzymes to digest fats, so before each meal, before I eat anything I sort of mentally think, “Right how much fat am I going to eat?” And I have various different measures of Creon, and I either take a small one or two small ones, or a big one, or something. And its, it’s a very, it’s slightly ad-hoc so I think sometimes you don’t take enough, sometimes you take too much, and that reacts, you know, and can cause you diarrhoea really.

 

So you take it before the meal?

 

I take it before, yes.

 

Vicky had radiofrequency ablation to treat 'secondary' tumours in her liver. She had a bad reaction at the second session and then developed a liver abscess, a side effect of treatment.

So you’d been told that you’d got some, how do you describe it, some small tumours or…?

 

He, he said lesions,

 

Lesions on the liver.

 

And … he, there was a certain amount of discussion I think with, and they reckon that what might be worth trying was something called radio-frequency ablation.

 

And so I had a meeting with the sort of chap who did that at the hospital. And he described it, he was rather less, he was rather more pessimistic. He described it as, what was it? Dandelion seeds, and I thought that’s not, I didn’t think that was a good, because there are just millions of those, and then I don’t, I didn’t really want to know that there were going to be masses of them. I mean I, I actually would, I’m a person who would rather know less than more in a way I think.

 

But, and he also described it as sort of weeding out. You know, there are these little ones and they, he implied that they’re just going to always be there, they’re going to you know, they’ll gradually get bigger and we can sort of attack them at various, at various stages.

 

And this first line of attack was going to be radio-frequency ablation. I was admitted for two nights. So admitted the night before you have it.. Again it’s sort of local anaesthetic, and then I was discharged.

 

And they decided to have a second go. So I had the first one at the beginning of May and the second one, middle of June. And after the second one I, after the first one I was absolutely fine, I went back onto the ward I think for recovery, and there was no problem.

 

After the second one, they obviously knew there was something that wasn’t quite right, and I sort of was in recovery- down where they operated on me.

 

And I can remember, I don’t know what went wrong but I went into sort of hypothermia, they’d put, had to put sort of those silver blankets on me. And they couldn’t get my temperature back up. My temperature, it had obviously plummeted, they couldn’t get, and so, I some, I reacted badly to something and they, they weren’t quite sure what.

 

But I was, I was discharged the following day because I was, I was found to be okay. But I had this nagging pain then, after that one which I hadn’t had for the previous one.

 

Where was the pain? The liver area?

 

The liver area. Yes.

 

Can you, can you explain in detail what happens during radio-frequency ablation? You said you had a local anaesthetic. Where was that for example? Where did they put the anaesthetic? Into the liver area? Or was it a sedative you had?

 

It was a sedative. That sort of anaesthetic, yes I think it was,

 

It just made you feel sleepy?

 

Sleepy, drowsy yes. I think you have a cannula and they inject something in. I’m sorry, I sort of block out,

 

Can you remember anything at all about what happened while you were having it?

 

No, I can remember hearing people talking, and being aware of people round me,, and the second time they did it the only thing I have vivid memories of is, is the sort of, knowing that I, something had gone wrong, but not knowing what. And they sent me home but I ended up about ten days later having to be readmitted because I’d got an abscess.

 

Oh dear.

 

And whether that had actually started when they, apparently it is a risk for an RFA, and apparently whether it had started after the first one and having the second one had really flared it up, so,
 
So the abscess was in the liver was it?
 
The abscess was in the liver. So I had a drain inserted and I was in hospital for three days I think. And they removed the drain and I was discharged.
 
But nothing’s simple. Two weeks later it was really, still really painful and I was re-admitted because it actually hadn’t cleared up the first time. And so I had to have the drain re-inserted and they actually then discharged me with the drain in situ. So I came home with an abscess drain, which I then had for, it must’ve been about three weeks.I lived with that.
 
Did they manage to get rid of the lesions when they were doing the radio-frequency ablation?
 
They got rid of some. But obviously not all because I’ve still, I’ve still got some.
 
I think you know they were able to attack the bigger ones, but obviously there are, there are obviously lots of little tiny ones that, I think that scans and things don’t pick up.

Vicky found it hard to forget that she had cancer and that one day her health might deteriorate. She found it difficult to plan for the future.

I haven’t actually changed my lifestyle much at all. I mean it does make you, you do things that you might have put off you know, doing. You know if you want to do something you jolly well get on and do it, because you’re, you don’t know quite how long you are going to feel well. 

 

And that’s, that’s the, that I think is one of the hardest things is, wondering when the day’s going to come when you’re going to wake up and you’re not, not going to feel as well as you did the day before. And you’re going to wonder, “Is this the start of the end?” sort of thing. That’s, that I suppose is probably the thing that sort of is constantly at the back of your mind. I mean they, they always talk about living with cancer, and it is, and it, you know you can sort of forget about it sometimes but really not, it’s there, it’s always there. And sort of it does affect whatever, any, whatever happens or things you know, you know things happening in a few months time. People ask you, “Would you like to do this?” And you always think, “Oh I wonder if I’m going to feel okay to do that,” sort of thing. But you just have to get on and do it, 

 

Vicky found the nursing care 'brilliant' on the ward during the day. After she left hospital she was still in touch with a specialist nurse based there.

What was the general nursing care like?

 

It was, on the whole, on the whole it was, it was very good. I found during the day it was brilliant. I found sometimes nights were bad. 

 

I had partly, you know there weren’t, there weren’t so many on, and more often at night they were agency so they didn’t know your, your history, quite as well as the day staff, and sort of what you’d, what you’d been through. 

 

And because you, when you end up on a ward you end up with people who are having probably some quite minor operations, and you know you’re, you’ve had a major one and I sometimes felt that wasn’t sort of totally taken, taken on board a bit, but on the whole, it was very, very good. 

 

And I was assigned a sort of specialist nurse who I could sort of use to come and see me and call on me, who sort of would liaise between, if there were any problems, you know if I had any particular problems she’d liaise with, with the doctors or consultants or just the staff on the, on the ward if there was anything particular.

 

Could you get in touch with her at anytime? Or did she just come and visit you every few days?

 

Well I could get the staff to bleep her if I really wanted. She was based at the hospital so she’d drop by, particularly over the first, over the first bit.

 

Vicky found it hard to walk up hill and felt faint at times. Eventually she was diagnosed with a rare form of pancreatic cancer, a neuroendocrine tumour.

It all started in May 2007. And my first symptoms that anything was wrong was I, I felt faint, and I live in quite a hilly area and I found that I was struggling to walk up a hill. And it got, I, I can remember at work people saying, “My goodness, you look very pale. Are you alright?” And I just, it was only over a sort of matter of a couple of weeks, and it sort of increased, this increased. 

 

And so I went to my GP. And she did a blood test, and found that I had a very low blood count, and put me on iron tablets. And actually that did, did make me feel quite a bit better but I’m extremely grateful to my GP because she decided she wanted to investigate further as to what it was. I had no pain anywhere, I had physical examinations, and nobody sort of found anything, it was purely this feeling faint, going pale, and just not sort of, you know, just I could walk on the flat but I couldn’t walk uphill. And that, those were the only symptoms I had.