If - this was an experimental treatment and you could only get it if you took part in the trial. If this had been set up as a randomised trial where you might get it or you might not, how would you have felt about taking part in that?
Oh, I would have gone for it definitely. Oh yes. If there was some treatment available which would be helpful, then I would definitely take it.
And how would you have felt if you’d been randomised to the group that didn’t get it?
Would I have known that is was the group that didn’t get it?
You might or you might not - depends whether the trial is blinded or not.
Mmmm, [sigh] well, I suppose it’s a bit like entering a competition and not winning. I’d have felt, “Well, that’s just the way the cookie crumbles.” It would have been helpful if I’d had the trial. If I couldn’t have the trial, then hopefully there’s a different treatment that could deal with me. But with this particular trial it’s been going on for a long time, and it’s very well established, and it will eventually, hopefully sooner rather than later, for the benefit of other people in my position, be approved by NICE [National Institute for Health and Clinical Excellence]. And hopefully it will be available in hospitals, so people don’t have to go through that terrible, terrible stress of deciding to pay for a treatment and then being landed with the whole of the costs of the NHS, which is diabolically unfair. Because when you have cancer it’s very stressful, you don’t need the added stress of the financial worry. That is really a life sentence. I feel that if the people who are in charge, all the bureaucrats, if they were in our position they wouldn’t behave like that. And I really feel that so strongly. And if there was something, you know, one could do about it, like petition or something - I know there are doctors who are very involved and being very cross about it as well, and doing something about it.
I suppose that what they would argue is that they don’t yet know whether it’s safe and whether it works, and that that’s what this trial is trying to find out before they make it available to everyone.
Yes, I’m sure that’s right. But it is, it is available. It’s available in America, and the Americans, of course, have a very good track record of cancer treatment, better than here, as I understand it.
Mmm, so there is some evidence actually over there?
Yes absolutely, absolutely. And also I think with this particular hospital I’m at and with the consultants I’m under, they wouldn’t recommend anything that wasn’t appropriate. Because there’s another thing - people can take the same drug but the side effects can be different, because everybody is different. People can react differently. The way the drug reacts on your cancer can be different, one person to another, so that’s another thing. It’s all very complicated.
Footnote' Licensing for use in the UK was approved in July 2008 shortly after Pam's interview.