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 perso. 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.

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.

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