Clinical Trials

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.

 

 

Yes, yeah.

 

 

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. 

I think one of the things that I actually find quite irritating is that people - I understand that money is, is an incentive. I want good health. I don’t need rewarding. I find it quite off-putting. But I do understand that in order to get volume in trials you’ve got to have some kind of incentive for people to go into them. And if they’re not aware or they haven’t got health problems of their own, then I can understand how it’s come about. I’m not comfortable with it at all.

 

 

Well, it isn’t only just first time. I mean, quite a lot of them are well advanced in the research so, no, I just, I’m not comfortable with the idea of being rewarded to do something which I do because I think I should be doing it. It’s morally right.

If people don’t volunteer, they’re never going to make any progress. You’re going, we need to find out which is the appropriate drug and if the majority of doctors are prescribing something else - it’s quite helpful as well to know about what there is available, which you don’t know immediately you go in, but then, of course, you become informed, so yeah, yeah. It’s important that people do volunteer, if they can. I mean, I was in a fortunate position in that I’d already taken early retirement from education, so I, it wasn’t a commitment that was going to take money out of my pocket or interfere with a job. I still would have done it regardless, but it’s easier that way, mm. 

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.