What’s it like when it finishes? Does it feel strange when you’re no longer going and being looked after by the specialist clinic or?

Not really, though. Well, it’s like a non-event. You just go along. In most cases you’re with the researcher on an individual basis. it’s not something with a group of you become friends and look forward to meeting together with the researcher, he’s interested in research, and it’s, By. And later on even if you try to contact him, he’s not interested, it’s just like a non-event. it’s just like going to the GP and then coming off.

When the trial ended, how did that feel when, when you weren’t going up to the hospital any more and were back to your GP? Was that okay? Or did you miss going to the hospital?

I missed going there, I missed going there.

Why was that?

Because I thought eventually they would, they would have more success. So I missed going there. I don’t mind taking the time go there.

So it’s kind of disappointing really that, that you haven’t improved more?

Yes, yes, yes, I’m disappointed. I’m disappointed, yes.

What were the things you particularly liked about the way that you were cared for there?

Yes, I think I was cared for all right. I think I was cared for all right, yeah.

Were there particular things, I mean was it they way that they talked to you or, what made it so good, going to the hospital?

I, as I say, I had a good rapport with them, you see. And so, you know, it was all quite nice. As a matter of fact, I really looked forward to going there, just to see them and just to have a laugh, talk and have a laugh with them, yes.

What did it feel like at that point when suddenly it stops?

[Laughs] Well, I don’t know. A bit sad, I suppose, in a way. it’s like a, because you almost become friends with people, you know. You’ve known, it’s the same sort of, more or less the same team over the last five or six years. And, yeah, I was, I was quite happy. I was, preferred doing it through this trial, you know, than, as I say, the normal GP way of doing it. And, as I say, since, since the trial ended I’ve gone back to obviously my own surgery and, you know, you get the same little problems like I was saying before. You just don’t get so much time and it’s, you know, a sort of, a quick visit, just one or two blood pressure takings. And they’re invariably higher than they would be when you take a few extra readings. But unfortunately you can’t convince your GP that, you know, it’s, to do any more.

Because one thing that happens, when you come off these trials you go back to your GP, and you, at the time you’ve sort of lost contact with the trial more or less. You can still phone people up, you know, I mean you have the number. But once you’re off the trial you’re not really under their control any more, you’re back with your GP. And it might be an idea to try and keep in touch more, setting up these sort of patients’ groups, in case you’ve got any problems you want to refer back to the trial doctors. Because you may go to your GP and they might want to do something differently. You may not agree with it. So it might be an idea to get the two together and, you know, get them to liaise and perhaps you can sort out problems more, more that way. The problem with being at your GP is that he can, they do tend to come and go, you know. If you’re at the Gps surgery, you may have the same doctor for, say, a year and then he leaves and another one comes, or you can’t always see the same doctor. So they don’t, they’re not really all that aware of your particular problem, you know.

Was that different at the trial? Did you tend to see the same people each time?

Well, it was a fairly small team, so you wouldn’t necessarily see exactly the same doctor, but you’d see one of, say, half a dozen either doctors or nurses who were there. So they all knew you reasonably well. You, they knew your, your history and your sort of medical condition. And you got to know the people there. So it saves going into all your background again, you know, and having to explain things. And so, I suppose sometimes the GP can look at the computer and see, you know, get the information off the screen, and he may not completely understand what your problem is all the time. You know, it’s not, when you actually know, somebody knows your problems, they’ve seen you several, over the last few years, you know, they get more understanding of what’s going on. So it’s, as I say, that might be an idea for, bring the two sides together a bit more, you know, comparing notes.

And as I say, I won’t know for however – I mean they have said that if, the cancer I’ve got, if it is going to return, it’ll return within two years of surgery. So I’ve hit the one year. And I said to my husband, In a way that’s nice because all the time you’re having your treatment, you feel like you are having this insurance policy. It can’t possibly come back, can it, when you’re having treatment So now it’s finished, and I read up about that a lot, that people are now feeling very vulnerable at the end of their treatment, because they don’t feel they’re having anything given to them to help prevent it coming back. it’s just in the lap of the gods whether it comes back or not now.

Yeah, I was going to say, is it, is it kind of a bit strange at the point when it finishes and you suddenly feel —

Yeah, it is. I was warned that it would happen and I thought, Yes, that’s inevitable And it did feel like that at first. I felt very, very sort of downhearted about it. And also you’ve got milestones. This time last year I was feeling this, and now I feel better And, you know, you’ve just got to be very positive and very, put it behind you. At this point in time, as far as I’m aware I haven’t got cancer, and I’ve got as much chance as anyone else of it coming, of getting it again as the next person whos never had it getting it in the first place. But it was very hard to describe to my children, knowing that they knew my best friend’s husband passed away very young, in his 30s, of a cancer. My mother died of cancer, and when she was in her 50s. They’d then only ever known people have cancer and die from it. They didn’t realise that people can survive it. And obviously in that time that’s elapsed, then technology’s changing all the time. And, but it was hard for me to sell it to them as that because they didn’t really believe that.

As I think I’ve mentioned, they also have been very sensible at the hospital I’ve been to, to suggest to anyone who wants to, after their six years, they can return for screening if they’re anxious, because everybody obviously felt very reassured. If they were being screened and nothing was showing up, they were feeling good about it. And when the trial comes to an end, suddenly you, you know, like me probably most people hadn’t checked how often you would go on doing it. You began to feel it was for life by the time you had gone for six years, and then it suddenly finishes. And the hospital have said, you know, If you want, every couple of years you can personally request to come back and have another screenin, which I think is a sensible thing to be doing. You know, I think it’s, that is treating the people whove been helping pretty well. So
Did they volunteer that information to you? Or did it, was it a result of you asking?

No, they actually volunteered that in fact. I don’t know, I probably expressed a bit of surprise that the thing had finished suddenly and, Oh, gos, you know. But they, I think they actually mentioned it. I think it again was this excellent screening lady, to be honest. I think it was the, really the only first-class person I met on the whole trial who volunteered the information. Whether anyone else would have, I don’t know [laughs].

Because apart from that, because it was a trial as well, you were getting needles put in and blood taken and all that on regular intervals, you know, sort of three times a day, before food kind of thing, [laughs] or whatever. You know, because they wanted, obviously because it was a trial, they were checking your blood continuously, you know. And then there was one of the guys, he really had a needle phobia, he was really bad with getting the needles, yeah. But no, I mean, like I said I think earlier, I was quite fortunate with the chemotherapy. Well, yeah, there were side effects I got after two or three sessions, a couple of sessions, the night after getting the chemo I would take the shivers. I wasn’t cold, but I’d just take the shivers. And then this is where the carer and your partner – and Helen would just bring down a duvet and just wrap it round me and, you know, and that was it. I don’t know whether it was one of the side effects, I don’t remember, I don’t recall it being as a side effect. There was a bit of numbness, itching and that sort of thing which was expected, but no, it was a
But basically quite a relief when it ended, then?

Yeah, yeah, in that way it was. You know, here you are at six months and that’s your average, you’ve hit your average now. You’re three to nine months, you’re six months – you’ve made it. Now what happens next, kind of thing. And then you get to the stage where you hear about all the targets, you know, after a year, after two years, after five years, and of course you’re going through things, saying, Well, will I make it to the year? Or will I make it to two years? Will I make it to five years, as time’s going on it’s not a depression. it’sI don’t think I was ever depressed, not to my knowledge, but there is the concern, you know, that, Hows things going to develop? You know, what’s going to happen and you’re living with it all the time. I mean, it’s very difficult. it’s easy, you know – I’m not being derogative – but it’s easy for a clinician to say, Well, you’re cured, because you’ve not got a tumou, but you’re not, you might have – you might not have the tumour any more but you’ve still got the after effects which you’ve got to live with, the breathlessness, the disability, unable to work, and the concern because you’ve had a cancer you’re susceptible to other cancers, you know, the rogue cell or whatever it might be is there.

And when it stopped, when the treatment stopped, how did you feel at that point?

Okay. You know, I was just glad I didn’t have to make the journey every day [laughs]. I felt all right, yeah.

You didn’t miss going?

And – no, not really, no. Although there were, there were some nice aspects to it, because that January was the sunniest January I ever remember, and my appointment was always in the afternoon, and I used to come back about four oclock and there was always a beautiful sunset over the Mersey, you know, coming back along by the river and that. And I did enjoy that bit [laughs].

It was nice. But apart from that, no, I was just glad that, you know, I didn’t have all that travelling to do. And also that it hadn’t made me feel bad like the chemo did. And that, you know, I felt again I was really annoyed about the chemo, because I had all those horrible side effects, and it hadn’t done me a blind bit of good [laughs].

[Laughs] Yes.

Luckily, I didn’t lose all my hair. It just went a bit thin, but, you know, I had the upset stomach and diarrhoea and constipation, and all the other horrible things you have.

You’ve obviously got some regrets about having taken part – or is regret too strong a word?

No, no. I don’t regret it at all. No, I – I suppose I do regret not having the courage to stop at two and a half week, perhaps, but then again I might have found that that wasn’t such a good idea. Because this lung damage I’ve got it might be caused by the Sjögren’s, not by the radiotherapy. I’m just assuming that it was.

So looking back are you glad you took part in the trial?

Yes, oh yes, I’m glad. Glad I took part. No problem.

FOOTNOTE’ The chemotherapy Celia refers to was not part of the trial. She joined a trial comparing different periods of radiotherapy after chemotherapy had failed to improve her lymphoma. Sjögren’s syndrome is an autoimmune condition, in which the body attacks its own moisture-producing glands, such as the tear and salivary glands. In some cases, other organs of the body are also affected, including the kidneys, liver, pancreas, lungs, blood vessels and brain.