If it’s a trial that lasts the same length of trial that mine did, for twelve months, it’s up to the individual, at the end of the day, it’s their choice totally. But you have to take into consideration the support you’d have from your immediate family, neighbours or friends, your age and your health, before you go into the trial. Because obviously if I hadn’t have been well within myself before, that would have very much made, had an impact on my decision. So – and obviously your family. Have you got small children? You know, hows that going to impact on them? Do you think they’ll cope without Mum around theoretically for the next however many months? But at the end of the day it’s got to be down to their choice. But find out all the information you can, ask as many questions as you can, and do, make the decision that’s right for you.

Yes, yes. I didn’t see the same oncologist. I don’t think I saw the same one, I must have seen about six different oncologists over the, the time. And obviously they’re just writing in the notes, in your notes, so I don’t suppose it matters. But continuity of care, I just sort of felt, well, I told them that last time. If, you’re not the same person, so you don’t remember all that So I did sort of feel a bit like a cattle market.

Foolishly, in my ignorance, I thought I was under him [the professor] for the duration. And I wasn’t. And I saw a variety of different professionals. And sometimes, because what happened towards the end was that it was every other three weeks I would see a doctor. And then in between that I wouldn’t see a doctor, I’d just see a nurse and have the treatment. But if I had any issues, then that nurse would feed back to a doctor and I’d get to see them. But sometimes it was so busy, I would actually be sitting on the bed waiting for the drip and the doctor would come to my bed. It wasn’t even in a room on our own in, you know, in confidence. There were other people eavesdropping on that conversation, which wasn’t ideal.

I did sort of feel that once they’d got my decision, they’d sold it to me and that was it, no more input.

What could they do better?

I think they could have warned me and said, Well, you won’t see me all the time. I’m the main chap, I’ve got a team working under me. Bear with us, you might not see the same team Then I would have been prepared for that. But I did sort of feel almost like a second-class citizen because I wasn’t seeing the same chap. Because if you go, if you’re referred, say, let’s say you’re referred for something to do with your ears, you’d see the ENT chap. You usually see them or their understudy, don’t you? And they usually explain, You’re seeing me because he’s busy or doing operations or whatever None of that was ever mentioned. It seemed to be taken as read that I would just get any of them. And rightly or wrongly, I don’t know, but it looked like some of them were quite junior doctors.

Just before Christmas I went to a major hospital away from where we lived, and I had an appointment there to see one of the oncology team. I also saw a professor, who was leading a trial. They explained about the facts up until – you know, went over all the surgery I’d had, reiterated all the things the surgeon had told me, but added into that the news that out of the fourteen lymph nodes two had cancerous activity. I didn’t know at that stage whether that was good, bad or indifferent, but I wasn’t, you know, I wasn’t very happy about that. Based on that, that’s why I was offered the chemotherapy, because there is a strong possibility if it’s reached the lymph nodes it’s on its way elsewhere. So I was then told the, the plan was to have six months of chemotherapy. Alongside that I was offered the chance, if I wanted to, to go into this clinical trial. And whilst I’d been waiting in the waiting room I’d read up about clinical trials, so I knew exactly what they were talking about. I asked a few pointed questions. It was all taped, by the way, so we could take the tape away, listen to all the questions, listen to all the things the professor had mentioned. We also had it all in writing as well, so we could read it. Which was really, really helpful, because I asked a friend whos a doctor of our, a doctor friend of ours to read through it.

She did some research. We researched it and we had about, I think, two weeks. We went back to see him, at which point he wanted an answer as to whether we were going to go through with it or not. We were explained to us that it’s a six-month chemo anyway, but the trial would be a twelve-month trial. So for the first six months I’d be on both, for the latter six months just the clinical trial. They explained all the side effects and everything. And after much discussion in the family, thinking about the impact on the children, and if all these side effects did materialise what impact that would have on us as a family with no extended family to call upon, I thought it was too selfish of me to ask for that. But my children said, Look, Mum, we’d put our lives on hold for a year if it means that you’re going to be better at the end, if you’ve got a better chance of survival So I ended up deciding to go into that.

At that point we were told it’s 50% of the people that are picked go on the trial, 50% don’t. It wasn’t a placebo, nothing like that. You’re either on it, or you’re on the trial but you’re not having the drug. They wanted to compare the two. It was a drug that has been used very, very successfully in advanced bowel cancer patients and they now want to trial it to see what the implications are of it on other bowel cancer patients.

FOOTNOTE’ Randomised trials are done when we don’t know which treatment is best, in other words when the relative merits and disadvantages of different treatments are uncertain. Of course trials are done because there is a possibility that a new treatment will be better than the standard or control treatment, and it may have already been shown to work for other conditions or groups of patients. However, trials are just as likely to find that new treatments are no better, or indeed worse.

I’ve got three children, and at that time they were, what would they have been? 12 and 14 – two 12-year-olds, a 14 year old. And it was an increasingly, you know, my son was going through GCSEs starting. And I didn’t really think, because I’m so active and I’m so involved with their education and their, their home life. As a family we’re really close knit, we do everything together, we’re self-sufficient, we don’t ask anybody else to help out. It’s the way we’ve always had to live. And the thought of them not having Mum around for what could be – because I was warned that if the side effects were really at their worst, you know, for the next twelve months the fact of the matter would be I would be not able to do anything. I said, sat them all down. We, it was a family decision, it wasn’t just my decision. You know, We might not be able to go on holidays. I might not feel up to it. It means, you know, I won’t be able to drive you here, there and everywhere. Because the children have lots of after-school activities. They’re both heavily involved with the church, with boys’ and girls’ brigade. There’d be none of Mum ferrying you here, there and everywhere. Also on top of that I knew that they were telling me I wouldn’t be well enough to work, and I understood that after a few months I would lose my salary. So that would have an impact on the family as well. And I just felt that, my husband works very, very long hours, so when the children came home from school, what inevitably happened, and I did actually discuss this with my son in the first couple of months because I felt so bad at that time, that [clock strikes three] it wasn’t fair for me to expect a 12 or a 14-year-old to look after their mother when it was an important time for them in school.

That did happen. And I felt really immensely guilty that, I’m their mother. I’m the one that should be looking after them, and they’re looking after me or that’s what I was assuming would happen. And, as I say, they all sat down and my son especially, the oldest one, because he’s very mature for his age, said, Mum, it doesn’t really matter. We don’t mind if we don’t have a holiday, we don’t care if we don’t have a holiday as long as you get better. And if it, if it helps you to get better, if it’s a, you know, strong drug and it’s got all these side effects, we’ll get through it. Don’t you worry about us. We will do it. And so that, that’s the way I had to sort of think about it.

And tell me a bit about how the side effects did actually affect you and having to go into hospital every three weeks, I think you said.

Yes, yeah.

What kind of effect did it have on your life in the end?

Well, at the start it meant my husband had to have a day off each time I went, because I wasn’t well enough to drive. So every three weeks my husband would have to take a day off, having had all the time off when I was in surgery at the beginning anyway. So that impacted on us. Financially it impacted on us, because it was a long drive there and back, every three weeks. And then if there were any hiccups and my blood pressure rose or my temperature shot up, I would have to go and have blood tests, and I might be asked to stay in overnight at the hospital till everything settled down. So there was a potential for that as well. So the cost implications on the travelling, the time impact on my husband with his work, that also meant that that third, once every three weeks my children came home to an empty house, no parents around. And it could have been for a lot, you know, a long time. It depended on what time of day my treatment was at. So it impacted more financially than, than anything else. But we got into a routine. We, you know, we did sort of quickly get into a routine of, This is what’s going to happen and we knew what to expect. But the side effects peaked and troughed a bit really, as I suppose they do in any, any sort of three-week cycle of chemotherapy.

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.

So at that point the nurse said, Okay, we’ve got all your details. You go back out and wait in reception. We need to ring the computer base that’s dealing with it, and in about five minutes we get told whether the computer’s churned you out as one of the candidates for the trial with the drug, or one of the candidates for the trial without the drug At which point we were really worrying. And one of my husband’s main worries was, What happens after all this hoo-ha and all this soul-searching if you say, I want to go on the trial and then at the end of the day you’re on the trial without the extra drug? You’ve gone through all that for nothing And I said, Well, it’s a chance I’ve got to take And I’m a very religious person and I feel strongly that God had a hand in that. If I was meant to have it, I was meant to have it. I was one of the lucky ones. I did go on the trial.* And that took up most of 2007.

And if when it had come to it, you’d been one of the people that weren’t going to get it, do you think you might have changed your mind?

No. I would have still gone through with it. I think I would have felt cheated. Yes, I would have still gone through with it, because I still think anything like that that helps improve the statistics for other people or the, you know, the long-term benefits for anybody else going through what I went through, it’s got to help.

Yeah, that’s, it’s really interesting, the motivations. There’s a kind of, there’s a mix there, isn’t there, for you of helping other people and possibly helping yourself?

Yes.

Which was stronger for you? How did you weigh up those things?

From a selfish point of view, it was more important for me to get this extra drug, because to my mind it was an extra bite of the cherry. If they felt I needed chemo, something else was going on. And the professor made it absolutely plain to me that I was an ideal candidate, based on my age, the fact that I didn’t smoke, I didn’t drink, I wasn’t overweight. And he said, You are an absolutely ideal candidate for this

So based on that, I read between the lines. And I’d also asked my friend to research it and she said, It is a very, very good drug it’s a very expensive drug, and it’s only been since I went on the trial that I’ve heard in the media that the specific drug I was on the trial was one that only cancer patients that go through BUPA are able to access. So I felt increasingly privileged that I had that, that drug.

FOOTNOTE’ Randomised trials are done when we don’t know which treatment is best, in other words when the relative merits and disadvantages of different treatments are uncertain. Of course trials are done because there is a possibility that a new treatment will be better than the standard or control treatment, and it may have already been shown to work for other conditions or groups of patients. However, trials are just as likely to find that new treatments are no better, or indeed worse.

*People who are allocated to the control group are also in the trial, not just the people allocated to the experimental group, as Wendy explains elsewhere.

The other thing I felt as well, I was really, really lucky – nobody told me to do this, it was only because my mother had had cancer and passed away in a hospice – I contacted the local hospice. And a friend of mine, whose husband had passed away of another type of cancer a few years ago, said, Get onto the Macmillan nurses And I said, Why I thought, That’s, they’re just for terminally ill patients they’re not. That was the misinformation that I’d got in my head. And they were really, really supportive, really, really helpful. The only thing I thought, it was sad that they don’t have a lot of information about the treatments and how they impact on patients. Therefore if they had that information, knowledge is power and that information could have helped them to help me, in retrospect.

Ah, that’s interesting. So, like about the side effects of a specific drug more for Macmillan nurses –?

Yes. So when I couldn’t get hold of anyone at the hospital, I was being offered, I was, they were really, really incredibly good, a lovely team of people at the hospice, and a colleague of mine actually works there as a volunteer doing massages for, for the patients, both the ones that are actually in the hospice and the ones that are day patients, and they were very, very helpful. But it would have been nice if, when I couldn’t get anyone straight away at the hospital, that the, say, the Macmillan nurses would have been able to have access to some of the information or privy to some of that information to have helped me if I’d phoned them second.

Are there any other things that you’d want to say to professionals about how they run these kind of trials and co-ordination of care with other members of your healthcare team? Or anything that you’d want to get across to professionals?

I don’t know how much information they feed back to your own GP. My own, the GP that I went to when I got diagnosed was very, very helpful, and he liaised with the Macmillan team nurses, so that when they came to see me one, at one particular point, she noticed I was very down in the dumps and depressed, and she must have contacted him. And he phoned me up and said, Would you like to come in and see me? I, you know, maybe we can give you something to help you sleep or whatever And he was very supportive in that way, in a general way. But I don’t think he had much information or knowledge about the side effects and what I was going through, what the nitty-gritty of the treatment was. And I, in looking back I feel that that could have been better. But I understand they’re very pushed for time. Whether he’d have been able to read all that, I don’t know. But it would have helped him, had I gone to him with any issues, that, Yes, I know As it was, I was just told, don’t go to your GP. Come to us But it’s a long trek to go and see them for every little, every little worry. I didn’t have many, but . . .

So what kind of side effects were they?

I got – it varied throughout the cycle – but throughout the whole cycle I would experience extreme diarrhoea, nausea and sickness, so you’d feel sick but sometimes you’d actually be sick. I had a sore mouth, ulcers in my mouth, cold sores on my lips. I had gums bleeding, so every time I cleaned my teeth my gums would bleed. I had the hand and foot syndrome, which is a well-known side effect of it, which meant that your, your hands go very red and sore and dry and blister, ulcerate – which is not so bad on your hands. You can put rubber gloves on or you can put hand cream on them. But on your feet, sometimes it was really difficult to walk. But, and, and also increasingly incredibly amounts of tiredness, really feeling lethargic. So that, you know, you’d have a good night’s sleep and you, you just couldn’t get out of bed. Or you just couldn’t do anything, you were so tired, to the like of which I’ve never ever experienced. And obviously with that as well I suppose psychologically I felt quite depressed, because none of the family could understand how bad I was feeling. I could only explain that to them.

And did you have to stop work?

Yes.

Yeah. OK. You didn’t get hair loss?

No, no hair loss at all. They did actually say to me that was the one plus. And the funny thing was I didn’t, that didn’t really bother me. I’m not a vain person. I wouldn’t have minded if I’d lost my hair. They did say that, You’re very unlucky if you do lose your hair, and if you do it’ll only be very minor amounts. You know, you’ll notice, when you’re combing it a little bit will come out more than normal. But you shouldn’t, shouldn’t lose any hai, which I didn’t.

And looking back at the information that you were given when you were making your decision and all the way through really I suppose, I mean, how do you feel about that now in hindsight?

What, you mean whether I was critical of it, or whether I thought it was enough?

Either. Whatever you, you felt.

I thought they were, they gave me more than enough information in the start. In fact actually it was quite worrying when the big list of possible side effects – and he did explain, That is everybody’s side effects ever, that’s ever taken that drug The ones that you’re more likely to get were the sickness, the diarrhoea, and sore hands and the bleeding gums. And that’s exactly what happened. So I felt I was well equipped to deal with the decision, because all the things that he mentioned did actually happen. It was exactly the way he described it would be.

They said that I wouldn’t get paid for going in the trial, there was no financial gain, and now I come to mention it they were going to let me know of the outcome of it, I will get told about the outcome of the trial, but it won’t be for over five years. There was no financial gain, I’d get access to the final results in five years’ time, and any medicines that I needed relative to the treatment they would provide me with. However, when I got certain side effects, I had to go to my GP about the mouth ulcers and whatever, I was prescribed things by the doctor, rang the hospital and said, How do I go about getting these without having to pay for them They said, Ooh, no, you have to pay for them And I thought, Well So they must have meant the traditional sickness and diarrhoea, but I was also told you would get these, you could get mouth ulcers, which I got. And I had to go through my GP and get [door bell chimes] prescribed drugs and pay for those. So that was a bit of a, that was a naughty one. Because that, when you’re earning no money at all, and it’s over six pounds something a go, was a lot of money.

It was one day I thought I would, the next day I thought I wouldn’t. It was up and down, up and down the whole time. I started off categorically, Yes, I will go on this trial And the more I read about it and thought about the implications of those side effects – not just for a week or two but for a whole year – and the money side as well because, you know, you’re not offered any, anything as recompense for you losing your time off, losing time off work like that. I was very lucky I had an employer who was very on board and very supportive, very helpful. So I think it was about, it was about right really.

Did you ever think about dropping out while you were taking part?

Yes, I did. And I was told I could do that. I was told that at any point throughout the whole trial, if I decided that I’d had enough, for whatever reason, they would not, they wouldn’t want a reason, I could just pull out at any time. There was no pressure on me to continue. Although I did say to them, Then how does that work with the trial Because you’re on the trial, you haven’t completed the trial, they’d then have to go back and start with somebody else. And that, and that’s one of the things that kept me going, thinking, If I pull out, it’s been a waste of time for them as well as me. I’ve got to do it, because if I don’t, they’ve got to then find somebody else to go through what I’ve just had to go through, and I’m halfway or whatever through it But I did, yes. And that was purely down to the side effects. They were so debilitating at times. As a strong person, I’ve never felt that ill in all my life. You know, I said to my children that I almost felt what it was like to live to be about 100, because that’s how old I felt at times. I was so, so sort of down about all the, the other side effects.

FOOTNOTE’ It is important to report any side effects promptly, as this tells the researchers something important. They may be able to help manage the side effects, or advise you whether you should stop taking part. Withdrawing from a trial because of side effects is entirely reasonable and no-one should feel they have to stay in for the sake of the trial or that they have failed if they stop.

I thought it was purely up to me, purely up to me. I think the balance was exactly right. They were factual; they explained why they were doing it. They said it was totally up to me, but that they felt I was a good candidate, and I sort of thought I was anyway because I’m normally quite a healthy person*. I thought they gave me exactly the right balance of information. And I, I think if they’d given me any longer than the two weeks, that would have been too long, because I would have had too long to dwell on it, and I wanted to get this treatment started anyway. And any shorter than that, probably not, because it, at least that two weeks gave me a chance to talk to other family members, have a look on the Internet and read up what I could on it, and mull it over with my family and talk about the impact on us.

*FOOTNOTE’ A good candidate for a trial is someone who meets the eligibility criteria. This is not related to their general health, but only to the specific condition the trial is looking at.

I did sort of feel a little bit that – I know he’s a very busy man, I never saw that chap again after the time I said I’d like to go on the trial. And I sort of thought, Yes, okay, you’ve sold it to me and now you’ve gone Because the funny thing was family members had said, Wow, you’re going to get really looked after. A professor. And, you know, he’s doing all these studies and he’s really well up on cancer, in a cancer hospital. You’re going to get so well looked after And I tended to think that as well. That was one of the plusses. So that even if I hadn’t had the drug, I was on the trial, I would be really well looked after. I did sort of feel that once I’d made that decision, it was a bit like buying a car, the after-sales service, I thought, it was, it was okay. I mean, I can’t say I complain about it. I did feel that you were rushed. You, every time you went every three weeks to get your treatment you would not have a lot of time to talk about issues. It was a quick tick list. Have you, hows, how bad are your feet? How bad are your hands? Have you had the runs? How often have you had the runs Which is why they’re, they obviously have to take that for their own records, and if it had been too much they might have reduced the dosage. But I was lucky, really, that they never affected me that badly until the very last cycle, when obviously it accumulates into your system. I was very lucky that it didn’t, it never sort of stopped, I never had to stop, and I never had any reduced, apart from the last dosage. But I did feel that because of – and I assumed that – the strains on the NHS, the amount of cancer patients going through that hospital, they didn’t have a lot of time for you to discuss your worries. They did have a phone call line you could ring, but often you’d get an answer machine and they’d ring you back. And if you were worrying about something, that seemed an increasingly long time to have to wait to get an answer. Because we were told, Come to us. don’t go to your GP because they won’t have a clue about what you’re talking about. We understand the symptoms. We’ll be able to tell you whether that’s something apart from the treatment or whether that’s linked to what, the treatment you’re having So I did sort of feel a bit – but that I could understand, they’re very, very hard pushed, there were a lot of patients going through that hospital. So I understood it.