So this young lady asked me if I would like to take part in a clinical drug trial, and she explained the situation. She says, It might not help you. There’s no guarantee She says, It might help other people further down the line And again she said, You’re a perfect patient for a drug trial, for a clinical trial She says, You’re young, you’re fit and you’re health [laughs]. You know, even I had to laugh – I was young, fit and healthy, the only problem I’ve got is I’m dying from lung cancer, you know.

So anyway, that was okay, so she says, Right, I’ll phone the trials unit and see what I can do So she phoned up, got an appointment there for the following week. Went along and, you know, a medical, a check-up to see that I was okay to take part in a trial, so I was accepted into the trial, which I believe was a phase 2 trial. It wasn’t randomised and as I said, I think I just quite followed, not quite followed the mice, but their tails were just disappearing round the corner.

It was six months of chemo. I was quite fortunate I wasn’t too bad with the side effects. It ended up there was a kind of group of us of four or five. There was about eight people I think getting the drug, but there was about four or five of us always seemed to be at the same point where we were, of getting the course of the drug but we’re at different stages of actual lung cancer. So during the course of that, you know, one was dying, a couple of weeks later another one would die, so it was a case of thinking, Well, you know, whos next? When’s it going to be your turn so to speak.

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.

When a person is in the system it’s not always at diagnosis that’s the best time to talk to them about different things, because at diagnosis, you’re, Oh God, I’ve got this, I’ve got that, I’ve got the other Well, you’ve got to give people a chance for that to register, and it’s all very well saying, Well, we’ll give patients all the information there and then That is not necessarily the best time to do it. But I think in general, I think there could be more awareness made regarding clinical trials, whether it be through newspaper articles, or wherever where people get the opportunity of really understanding what they are and what they’re about, rather than, I suppose, the general consensus of opinion is still the guinea pig effect. And it’s not necessarily the guinea pig syndrome kind of thing, and I think that’s perhaps what needs to be more expressed and more explained to people.

We were all getting the drug, and there were, the explanations from what I can recall were very good. It was explained again about I can withdraw at any time, if they find I’m having bad effects with the drugs that they’re giving me or, then they would pull me out, because I think obviously they were looking at the quality of life, as well as trying to find out if this drug was effective, you know. I have no complaints about that side of it at all and the nurse, the research nurses who were involved also were very good at explaining, and they would take their time, either if myself, or Helen, or any of the other patients who were there had questions. Some patients didn’t have questions. As usual some people want to know everything and some people don’t want to know anything, some people want to know a wee bit, you know. But because my, I felt whatever was going to happen to me, whatever decisions I was going to take it was going to affect my whole family, so I wanted to know everything, which perhaps maybe made it a bit easier for the medical staff because they knew, Well, Tom wants to know, so we can talk to him, we can tell hi, you know. But I have no – on recollection the medical staff at that time were very good with their explanations.

But I’m involved with CACTUS, which is the cancer clinical trials unit for Scotland. I’m the patient representative on the executive committee for that, and I was talking to one of the guys there, and I was talking to someone else, maybe it was the lung clinical studies group, about a website for clinical trials. And they said, Oh, well, it’s very difficul and all that, because we spoke about it before as part of the West of Scotland cancer network, the lung cancer part, and we said then the professionals weren’t too keen about putting available trials on a website or anything like that. He says, No, we don’t want people phoning up and demanding to be put into trials I said, Wel, I said, it’s not quite that I said, it’s a case of putting up what is available, but also having on it that these trials are not available, are not suitable for every patient, and every patient’s not suitable for these trials. it’s up to being acceptable and the many different aspects But it would be interesting for people to be able to say to their consultant, Well, what about this trial, what about that trial? Explain it to me, is it feasible for me I says, Whereas just now people just don’t know, and it’s up to the physician, the oncologist, whoever it is, to tell the person about a trial.

Now, that medical professional might not be too interested in that particular clinical trial, therefore he won’t, or he or she won’t offer it. There’s also the fact that, with all due respect, there are medical professionals who don’t like losing their patients to somebody else, so if they’re not doing that trial but somebody else is, they don’t want to lose their patient to that other professional. So I said, There are various aspects of it. I think people need to be aware that there is a possibility of trials without it always having to come from their clinician, like I say, who might not be into clinical trials Well, that’s too much work for me, I’m doing enough Because there is a bit of work involved in them, because they’ve got their own NHS, probably all their own private work as well, some of them – no disrespect meant. So there is a workload aspect probably too, but I think people should be allowed to question, Well, can I go into this clinical trial? No? Why not and if they’re not suitable then that’s fine, you know. But yeah, there should be something where people can challenge the chance or the opportunity of clinical trials.

What would you say to other people who may be watching this and whove been invited to take part in a trial and are thinking about it? What would your message be?

Give it serious consideration, get as much information from your consultant, oncologist, whoever’s talking to you about it, talk to your family about it also. And again, as I said earlier, I think a lot will depend on the individuals prognosis and how you view the best possible treatment that you can get. The treatment won’t be any worse, because if, as I said earlier, if you feel as a person that’s it not doing you any good or if it’s making, your quality of life is being reduced by it, speak to the doctor, speak to your consultant. If they see also that it’s having serious effects and negative effects, they’ll pull you out of it. So you always have the option of stepping back from it. But do give it serious consideration, because you will be treated well. There is the aspect also that a lot of people say, Well, if you’re in a clinical trial you get better treatment I don’t know if it’s a case of getting better treatment. I think probably there are more tests done on you to make sure that the drug is not having a negative effect, so in that way perhaps people think they’re getting better treated. But I was involved in doing, as a part of the working group with the NHS Quality Improvement Scotland, doing the standards, reviewing the standards for lung cancer, and also for the core cancer standards, and that was one of the things that I got them to put in it was that just because you take part in a clinical trial doesn’t mean that, if you don’t take part in a clinical trial doesn’t mean you’re not getting the best of medical attention. So you are. But no, I would seriously give it serious consideration for taking part in a clinical trial, yes.