Have you got any suggestions about how staff training can improve those things that you’ve mentioned?

Oh yes. I think they must as I’ve said, they must be taught that each patient is an individual. They’re very vulnerable. They’re very sensitive and what they want is kindness. They don’t want to hear, ‘Oh I’m too busy to bring you a bed pan’; Or, ‘Get up and go you’ll be alright. I mean they kept saying, ‘You can go to the toilet. And I said, ‘Well look, I can hardly walk, I will wet myself by the time I get there. Well you shouldn’t have to say this. I mean patients know whether they can get out of bed and get to the toilet in time, but to be told, ‘Get up and go. And having to explain, well I’m afraid I can’t. They should know this; they should know each patient and their capabilities.

You also put a lot of stress on the importance of being listened to.

Oh yes, yes. They don’t listen at all they just tell you what to do, they just dictate really. You’re not a person, you have no points of view, you don’t seem to have any feelings as far as they’re concerned. You’ve just got cancer and they’ll do this and they’ll do that and that’s it.

So really what you’re saying is apart from paying attention to the physical treatment and consequences of that, to look at the person as an individual with emotions and needs.

Absolutely, absolutely. We… although in the old days nurses did, and so did doctors, I mean they’d sit by your bed. I mean, I remember when I had my appendix out when I was a teenager and they sat by the bed and told you what was going to happen and chattered away but now they don’t and I’ve seen, oh masses of doctors during this year’s illness and I don’t think one of them has sat and talked to me as a person.

I feel very strongly that there shouldn’t be discussions in huddled corners and mumbles and murmurings; I want to know everything about myself and the contract that I have with my health care providers and the people that treat me and the people that administer to me is that you can treat my body as long as you tell me everything. The minute you start holding information back from me or not telling me anything then you lose the license to treat me. And if everybody worked on that basis, and if there were no, as I said, huddled whispered conversations in corners people would feel a lot better.

I’ve heard of so many times when “Well you know hes dying don’t you?”, “Does he know?”, “Oh no, no, no, ssh can’t tell him, look at the effect it will have on him. But it will have one hundred and fifty million times worse effect on him when he finally discovers through reading some notes or opening a letter he shouldn’t do or hearing from somebody else;

My kids heard that I had cancer in the school playground and from a teacher making an off the cuff remark which she thought was innocent. Everybody has a right to know about what it is happening to them and whether their illness is more serious than they believe. And theres enough information there. Theres enough trained people now to talk to children of a relatively young age about what is happening to their parents and their loved ones. And they will cope with it, just give them the opportunity.

Theres no continuity of care. Each person as they’ve come in to see me, until they read my notes have no idea what has happened to me. And now because I am, well, feel that again they are not looking beyond what I am saying that I am feeling well. The last check that I had which was only a month ago, to me, from the checks that I had before, was very cursory. And it makes me feel quite insecure in again a similar thought, sort of thing could be happening. So I am seriously thinking of writing to the consultant that diagnosed the sarcoma which is private and asking if I can see him again because I know that he will do a much more thorough check.

Yes; Now we –

I’m lucky that I have private care. If I didn’t I don’t quite know what I would say because if I expect the people that have seen me under the National Health Service to spend more time with me than they do I am taking them away from other people who perhaps need them more. It’s a difficult situation.

But what you’re saying is you think you need that time to be given good care.

Yes. I think, for my own peace of mind because of the prognosis that I’ve got I feel now because I’m well that the checks are cursory but I can’t expect them to do a CT scan every time I go. But its eighteen months since I had one now and I know that that picks up single cancer cells anywhere in your body.

So if you were able to say to a health professional, ‘this is what I want for my care now.

Hmm.

– you would be saying you want these regular check ups perhaps more thorough, more time given and continuity of care?

Yes.

Is that the main things?

That is but then I would feel guilty if… if I was taking time from people who need them more than I do. It’s very difficult. You put it on a personal level but when you think about the effect it’s going to have on what is going on within the hospital and with other people who need care you think well I’m being very selfish theres nothing wrong with me I’m fine. But for your own peace of mind I feel you need that little bit extra.