Audrey – Interview 12

Audrey was diagnosed with pancreatic cancer in 2005. She had a Whipple’s operation, followed by chemotherapy and radiotherapy. The cancer came back in 2008 and 2009 so Audrey has had more chemotherapy and hopes to stop treatment soon. She feels well.

In August 2005 Audrey started to have slight tummy upsets. Her tummy rumbled. In October she also started to have a bit of heartburn. The GP prescribed omeprazole for the heartburn. This didn’t help, so another GP referred her to a gastroenterologist. The GP also arranged for Audrey to have an endoscopy in December. The endoscopy showed that Audrey had gastritis, oesophagitis and a slight hiatus hernia.

It was now December and Audrey was losing weight. Audrey also noticed that her pee looked dark and her poo was pale. Audrey started to feel really ill so she went back to the GP who said she should have a scan. The GP said that she would have to wait three months for the scan, so Audrey decided to pay for the ultrasound scan privately. Meanwhile the GP arranged liver function tests and blood tests.

Audrey had the ultrasound scan in January 2006, which revealed a blocked bile duct. That weekend Audrey felt worse and was sick. She decided to go to the A & E department at the local hospital, where she was admitted. The next day Audrey had another ultrasound scan and then a CT scan. That evening a young doctor told Audrey that she had pancreatic cancer, which was a great shock to her and her family. A consultant then told Audrey that she probably had a cancer that was difficult to treat, which made the situation worse. The next day there was a meeting, where her case was discussed. Afterwards Audrey was told that surgery was available for her. Audrey went home for the weekend.

The next week Audrey went in to hospital for a laparoscopy, so that the surgeon could make sure that the cancer hadn’t spread to the liver or elsewhere. In February 2006 Audrey had a Whipple’s operation. She was in the High Dependency Unit for a few days and then moved back to the main ward. She had an epidural so didn’t feel much pain. However, she felt very weak and found it hard to eat anything and had some bleeding from her bottom, which frightened her. The doctor did another endoscopy to see what was happening. Audrey was in hospital for 17 days in total.

When Audrey got home she gradually got stronger and started to go outside. She tried to eat small amounts of food at frequent intervals. The GP and the district nurse called at regular intervals to change her dressings.

On 25th April Audrey started gemcitabine, as part of a clinical trial. This continued for six months until September. It made her a bit tired and sometimes she had flu-like symptoms, but she didn’t lose her hair.

Audrey had a year without any treatment and then in December 2007 she saw the oncologist, who told her that the tumour marker CA19-9 in her blood had gone up to 193. This is abnormally high. In February 2008 Audrey had a CT scan, which showed that her cancer had come back. This was very disappointing. Audrey and her family had a holiday and then in April she started some more chemotherapy. This was gemcitabine again. Audrey also had five weeks of radiotherapy while she was having her chemotherapy. This all finished on 26th September 2008. This treatment made her feel very tired. She also developed swollen legs and feet.

In 2009 Audrey started to have some trouble with her digestion. She had pain when pooing and her poos were loose. She went to her GP who referred her to a doctor who specialised in bowel problems. She had another CT scan. Audrey thinks the cancer had come back in her pancreas. The doctor said that she could either have more chemotherapy or she could just have medicines to control the pain. Audrey decided to have more chemotherapy. When we met her in 2010, she had been having chemotherapy every other week since July 2009. She had fewer side effects this time. She hoped that soon she would be able to stop treatment for a while and was going to see the consultant the following week.

Audrey is grateful that the treatment has worked so well and she really appreciates every day. She and her family have little holidays between treatments whenever possible. Her family and friends have been very supportive. Audrey is taking Creon to help her to digest her food. She finds she can eat most things but has to be careful not to eat too much at one time. Audrey thinks that her cancer is well controlled even though it may not be cured.

We talked to Audrey in 2010

When Audreys cancer came back she started intravenous gemcitabine again, this time with…

Age at interview 73

Gender Female

Age at diagnosis 69

What was your feeling when you heard you had the recurrence?

I was very disappointed and upset because I, I really thought the operation was the cure and I couldn’t really believe it and we did go to see the surgeon again and see if he could possibly [operate again] , but he said I can’ I suppose he did his very best the first time and, I don’t know why but anyway he said Your best bet is the chemotherapy, go for i. So we did. I had the first one on April 11th and the second one which was going to be the next week I couldn’t have because my platelets had gone down to 40 and they’ve got to be a 100 before they can give you the treatment. So the first bout of chemotherapy must have affected my platelets so I went again the next week and they were up again to 180 or something they’d made a recovery so I carried on with that.

Was it a different sort of chemotherapy?

No exactly the same.

The gemcitabine?

Yes, and this time the oncologist said I would like to try some radiotherapy as well.

Yes.

So during the chemotherapy I started radiotherapy so I was really dashing from one unit to another, I had this on the same day. But it was alright you’re only there for a few minutes for the radiotherapy, it was in the same building.

Can you explain what it’s like to have the radiotherapy?

it’s a bit like the, the scan really the CT scan. You lie on a bed and this machine just passes over, oh they mark you up first, you have to go for an appointment and they put a little tattoo in the places where, you know, it’s got to be and then you lie on the table and this big round machine goes to one side and slowly over and you don’t feel a thing really.

Did you have any side effects of the radiotherapy?

Well I don’t, I was tired, very tired but I was having the chemotherapy as well.

Yes.

So that all finished on the 26th September.

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Audrey’s husband and her three adult children were very supportive. They accompanied her to the…

Age at interview 73

Gender Female

Age at diagnosis 69

How did your husband react to this news?

I think he was shocked, but took it, he’s very placid my husband is and he’s been very supportive and, but it’s been the children mostly, they’ve been absolutely wonderful, every important meeting we’ve had with consultant or surgeon they’ve been there, we’d go in and say, Have you got plenty of seats, the gang are here you know, every time not one of them but the three children and my husband.

That’s wonderful.

Yes, he’s been really good and my friends have been fantastic as well, you know, to visit and helped out when I was home after the operation.

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Audrey described her time at home after the Whipples operation. The district nurse and the GP…

Age at interview 73

Gender Female

Age at diagnosis 69

What was it like coming home?

Oh it was lovely to come home, be in your own bed, but I’m a very active person really, I couldn’t believe how weak I was I’d lay on that settee for about 2 weeks. I always got dressed and I never stayed in my pyjamas but I found a shower, still now when I have a shower it comes over me, I think, Oh I could hardlyrdquo;, it just used to wear me out just to have a shower, you don’t, you can’t imagine it can, you don’t know what it’s like. And my neighbour persuaded me after about a fortnight to just walk down the drive, it was a nice sunny day, it would be March I suppose and she just said just come, I think thought I was going to be stuck there forever, you know, I’d got no incentive at all to do anything. My first real trip out was to a, which I thought was rather apt really, was to, there was a mothers day service at my grand-daughter’s school so that was nice and then on the Sunday we went to a mothers day lunch and I managed that alright so. That was my first, first trips out.

Did the district nurse or any nurse call at all?

Yes, I had a lot of attention from the doctor and nurses came to take blood pressure and do dressings and keep an eye on this PEG thing that I’d got in my, they kept that in for quite a while and then when I went to see the surgeon afterwards he took it out.

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While taking gemcitabine Audrey felt tired, had some flu-like symptoms and sometimes had blood…

Age at interview 73

Gender Female

Age at diagnosis 69

The side effects were the first day after the treatment I was full of beans I could have, you know, gone right through the house and really well and very rosy cheeks, really, really red and I was a bit concerned about that but I asked them and they said that is part of the side effects. And then the second day afterwards you start to get a bit tired and this shivery flu like feeling but it passes and there’s no hair, no complete hair loss, it goes a bit thin but you don’t lose your hair. I don’t think it’s a very aggressive type of treatment. I mean this is only my, I don’t know how it would affect other people but it really hasn’t stopped me doing very much at all.

Good.

But then you’re just beginning to feel really okay and you have your next one.

So how many months did that go on for?

… that went on till, I’ve got it written down, till the 26th September.

From the 25th April.

So getting on for five or six months?

Yes six months it was yes that’s right six months.

Did you have another CT scan at all?

Yes afterwards and he was very pleased with that. And then I think I had 12 monthswhen I didn’t see when, no I didn’t have any treatment I would see him at three monthly intervals.

couldn’t complain about the treatment and very patient and spends time with you if you need them they seemed so busy, so it was the December, this is where I get mixed up with the datesThat’s right I had a scan on the 30th November but I don’t know what year it was. Sometimes while I was having the treatment I had to have a blood transfusion.

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Audrey had felt well for a year but at a check-up the doctor found her blood CA19-9 cancer marker…

Age at interview 73

Gender Female

Age at diagnosis 69

So in December 2007 I saw the oncologist after having had the blood test the week before because that’s really the only way they can monitor what’s happening apart from a scan. And the marker is CA19-.9 it’s a cancer marker and they like it to be below 30, well mine had gone up to 180 so that was a sign that something was going on but he said don’t worr it was just before Christmas, don’t worry about it, it could be you’ve a bit of an infection or something, we’ll do another one in two weeks tim. So they did another one in two weeks time, and that had gone up to 193 I think.

So then he said We must have a sca. So we had a scan.

Another CT scan?

Yes on February 15th so it was quite a wait, you know a month or so.

But it all takes time there are so many people aren’t there? So I had the scan on February 15th and went to see him a week later and he said there was a recurrence so it was a bit disappointing that was really.

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Audrey was alone when a young doctor first told her she had cancer. Later a consultant added that…

Age at interview 73

Gender Female

Age at diagnosis 69

Yes, I had another ultrasound and they didn’t tell me anything about it but immediately after that then I had the CT scan. And then went back to the ward and at about five o’ clock that night a young doctor came in and told me I’d got pancreatic cancer, just like that, no one there, I was absolutely stunned and shocked and I can’t really explain what a, you know, traumatic experience it was. And shortly afterwards my neighbour’s daughter came to visit and I couldn’t tell her.

Of course not.

She’s a young girl and I didn’t want to tell her, I didn’t want her to know before my immediate family but anyway they came quite quickly afterwards and.

How terrible.

But, you know, of course they were upset but.

Did he just give you this news and then disappear?

Yes quite quickly. He was ever so, he was a nice, but very young.

He was, you know, it was just really after he’d gone I thought Oh here I am, one minute I’m not too good but the next minut I don’t think I’d ever heard of pancreatic cancer before. Anyway what happened nextoh my family came and, the youngest son’s very emotional and I knew that he was going to be the one, my daughter is as well but he’s the worst, and I looked at him and his eyes filled up with tears and I said Look I don’t like it but we’ve got to get through this togethe and from then on he’s been wonderful.

The next stage, I saw, I was moved then from the medical assessment unit to a ward and my daughter had spoken to a consultant and, a young one, and he said that another consultant would be coming to discuss the situation with us so we met him in a little private room on the ward and that was dire. I can’t tell you how, my daughter calls him Dr Death because he, he just said Well you’ve got pancreatic cancer its probably the most common sort and that’s the most difficult to cure and to trea he said There’s going to be a meeting on Thursday, the multi disciplinary meeting and, you know, they will have the same diagnosis as me, I’m sure 90% will be the sam. Well it was awful really, we had really a nasty day then, you know, thinking about it.

Did he not say that there might be something they could do at that stage?

He said they would probably be able to give me chemo but it is difficult to treat.

Anyway we got through the next two days and they all turned up for the result of the multi disciplinary meeting but no one showed up so they came again the next day and this time a very nice young doctor came.

And he said, We had the meeting yesterday and we’ve decided you’re a good candidate for the operatio. I couldn’t believe it and I was a bit, I have readjusted my mind to not having it, I thought Oh dear do I want this operatio but of course I did it was just the initial shock.

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