Lilian - Interview 33

Age at interview: 74

Age at diagnosis: 74

Brief Outline:

Lilian was diagnosed with pancreatic cancer in March 2010. She was having chemotherapy, as part of a clinical trial. Lilian was not in any pain, but at times she felt a bit sick and very tired. She was quite optimistic about her treatment and was living one day at a time.

Background:

Lilian was a doctors' receptionist before she retired. She is married and has two children. Ethnic background/Nationality: White British.

More about me...

Just before Christmas 2009 Lilian felt very sick. Her GP could see that Lilian was losing weight and so she gave her some pills to ‘boost her up’. She also took some blood, which came back normal. Lilian’s GP thought that Lilian was tired due to all her voluntary work in the town. 

 

The sickness continued and Lilian went back to see her GP after Christmas. She told the GP that she was still losing weight and that she was itching on the balls of her feet and palms of her hands. The GP did another blood test and found something wrong with Lilian’s liver, so she arranged for Lilian to have an ultrasound scan.

 

Lilian had a scan the next day. She saw a consultant, who looked at the scan. He said that he could see abnormalities on her liver. Lilian then had a CT scan. Soon afterwards the consultant told her that she had cancer of her pancreas. The cancer was in the tail of the pancreas. This news did not come as a huge shock to Lilian. She had guessed that something was seriously wrong and her father had died of pancreatic cancer.

 

Lilian had two liver biopsies. Unfortunately, a few days after the second one, there was some bleeding in the liver. This was very painful. Lilian also had two PET (Positron Emission Tomography) scans. All these investigations were to find out if the cancer had spread. The tests found that the cancer had spread to her liver and to an area under her lungs.

 

Lilian then saw another consultant at the same local hospital. At first Lilian was given steroid tablets. The tablets stopped her feeling sick but had a bad side effect. Her feet became very swollen and she could no longer wear her shoes. Lilian decided to stop taking the steroids. The sickness returned, so now Lilian takes a smaller dose of steroid, which makes her feel less sick.

 

There wasn't much the doctors could do to treat Lilian, so she asked if there were any new drugs being tested. She said that she wanted to be a ‘guinea pig’ if there was a suitable clinical trial.

 

At the end of March 2010, Lilian started on a trial of chemotherapy (a phase 1 trial of oral NOTCH inhibitor in combination with gemcitabine). She was four weeks into this treatment when we spoke to her. She goes to the hospital once a week for a series of tests and if her blood count is ok she has an infusion of gemcitabine and a chemotherapy tablet.

 

The dietician is trying to persuade Lilian to eat more because of her low weight. Lilian also takes omeprazole at night to help her with her digestion. 

 

Lilian told us she has a strong Christian faith, and this was a comfort to her. She was living each day as it comes. She wasn't in pain and could go out and drive her car when she felt like it. She was getting tired, and suffering from nausea at times. She knew she should rest as much as possible.

 

We spoke to Lilian in 2010 

Lilian had two liver biopsies. Each time doctors inserted a needle, which did not hurt, but after one biopsy she bled internally and was in agony.

Would you mind just summarising what it was like having a liver biopsy?

 

I’ve had two. I had one done at the first hospital, when they first realised I’ve got the abnormalities on the liver. And I had one at the second hospital. 

 

I would say to anyone, don’t be, don’t be afraid because you will be taken obviously into a room, and they anaesthetise the part around your liver, so that it’s like when you have anything done. And then they, they put a long needle into you, it sounds dreadful and you actually can see this, and it looks dreadful. But you do not feel it. And from that needle, it I suppose it’s like a little clamp, because the clamp about two or three, depending on how many pieces of your liver they want. The first time I had two pieces taken, the second time I had three. 

 

Then they take these little pieces of liver out, and they are analysed. That’s when they found out how serious it was. It wasn’t until the liver biopsy was done that they then realised the seriousness of the extent of what I’ve got.

 

And you said that after one of them you had the side effect of a bleed?

 

The second one I had.

 

And that was painful you said?

 

It wasn’t painful when they did the biopsy.

 

No, the bleeding?

 

But the bleeding, but it, but I will tell you in fairness to the hospital, when you have a biopsy, first of all, which is a bit daunting, when you’ve had it done you must lay on your side for five hours.

 

And they monitor you all the time, taking your blood pressure, taking your temperature, looking at, its, it’s here, so you, there’s a needle mark there. And they are checking it, and then after that you can then lie on your back for so many hours. You are actually in a bed for eight hours.

 

And so I advise anyone who has to have it done, take a good book if you’ve got a good book to read. And all day on the second one, they had monitored me, nothing was wrong, and they were so pleased with everything. It wasn’t until the Friday evening, the following Friday that I was in such agony and I was fortunate enough to have a friend who’s a doctor in the town where I was visiting, and he said, “Lilian, I think you’ve got a bleed. You’re got a bleed, and I would suggest George get you back to [the hospital].

 

Oh the hospital, the large, the second one, as quickly as possible.

 

So the side effect of the bleed started a few days after you’d had it?

 

Yes.

 

Okay.

 

In other words I think more, to be honest I think it was a fluke. It isn’t common.

 

Well why, and also why didn’t I bleed almost the next day?

 

Yes

 

It, but it did take a few days to sort itself out.

 

Lilian asked to go into a clinical trial. She is happy to be a 'guinea pig' and feels that a trial is important for her and for the advancement of medical science.

And have decisions usually been made together, as husband and wife, and with the doctors, or have you let them make decisions?

 

Well my, it was my decision to ask to go on a trial.

 

And I did say to George, “It’s no good you telling me you don’t want me to do it, because I’m going to over-ride you this time. I want to do it.” And he has backed me up all the way. But in general I think we both feel that we couldn’t be treated better if we wanted to. And we, we also, and even include George as part of the team,

 

That’s good.

 

Yes they’re brilliant, you know, he sits with me while I’m having my chemotherapy and that, and they talk to him as much as they talk to me. In fact sometimes he listens more than I do.

 

And what convinced you that the trial, a trial would be the best way forward?

 

What convinced me was, I thought about my age, I thought about the life that I had had or have and I thought, “Well hang on a minute, we have nothing to lose. If it works and if only say well five or ten years from now they find something that they have learnt from people like me then it will be all worthwhile.”

 

I, and I just, I for some reason, I can’t explain to you why, I knew the minute she said what I had that’s what I wanted to do. And I hadn’t even really pondered about it, I just knew that I needed to do something about it in hope that somewhere along the line even if it’s ten years from now, can gain from the expertise they learn from people like I and other people that are quite happy to be guinea pigs.

 

But not everybody wants to be a guinea pig.

 

No.

 

Everybody is different. Some people can’t accept it and some people can accept it as long as they’re just on treatment.

 

If you hadn’t been on a trial did they say what chemotherapy could do for you?

 

No. I didn’t even ask them.

 

Okay.

 

I didn’t bother.

 

No, so you were convinced a trial was the best?

 

In fact I actually told them, “If you don’t,” and George is sitting here beside me so it’s true, I said, “If you refuse to let me go on this trial basis, I’ll tear the hospital down.”

 

Lilian has had two PET scans. She was alone in the room with a big machine, but she did not find it daunting or claustrophobic.

Right a PET scan is when you are taken into a certain part of the hospital that is radioactive. Certain nurses and doctors are in there. They first of all inject you with a form, I assume it’s a form of radioactive liquid or something, and then you are left in a room very quietly and they, they will turn the lights off for you if you want to have a little sleep, because you’re in there for about nearly an hour. Then you are taken into this room, it’s a large room with the scanner in it. They prepare you for it, but lying you down and making sure you are comfortable. Then everyone goes out of the room, including the people that monitor it. And then they will say, “You,” and they can speak to you from behind these glass windows, and you can hear them. And I assume that when you speak back they can hear you. And they will say to you, “Right we’re going to start now Mrs whatever,” and you, you go under in phases, it stops and starts and stops and starts. They ask you to breathe in, and then to breathe out for certain times. And it, you could have seen something spinning around which I assume is a camera, you don’t know, you just assume all this.

 

They can take a while, going back and forth, back and forth. And they constantly are in touch with you saying, “Are you alright, are you comfortable?” and that. Which you are. Its, it is not, it was not daunting for me and it was not claustrophobic. You are, you are, I would like to emphasise you are not locked in, or going right through a great big tube where you, where you really, your whole body is under it together. You go in phases, where they back and forth, back and forth, depending I suppose where they’re looking. And this goes on for a while, and then they just say, “Right, that’s it.”

 

I did ask, “Did people get claustrophobic?”, and they said, “There are the odd person”. I did not feel it. But I could fully understand why you could be claustrophobic because there isn’t anyone in this big room, except you and this machine.

 

And then they do ask you afterwards if you’re going to go the restaurant, and if there’s a child sitting near you would you not sit near the child because, only for a short while not very long, you’re still radioactive. And they ask you to be cautious towards the child. But it doesn’t last very long, about half an hour. But there is no discomfort. No injections, you just, you have to be stripped off obviously, and no metal. And I did not find it difficult, but yes I can understand why people do. It’s a big room, there’s a big machine, and just you.

 

The Macmillan nurse told Lilian about regular meetings in the town for people with cancer. The nurse answered questions there.

You said that your husband has been very supportive. Have you sought help from anywhere else? From any of the cancer support groups?

 

Well, Macmillan’s actually got in touch with me.

 

We have a local Macmillan nurse and she contacted me. But it was rather funny because she kept phoning me leaving messages. I kept phoning her leaving messages. This went on for weeks. Eventually a month ago we did meet up and in the local town they meet up once a month in a little hall by one of the surgeries, and they have a little get together. There are people there who have lost someone recently from cancer, or they’ve got cancer, or like George will come with me, their partners go along with them. And it is quite a nice little get together; it’s only a couple of hours. And you can, if you’ve got any very serious problems the Macmillan nurse is there. And she likes to meet you because, well, just in case I ever need her, then she’ll know who she’s coming to see. But there’s a very supportive system for cancer patients. Not just pancreatic cancer in in this little community.