Living with and beyond cancer

 

Yeah they, I went, I think I had to go back and see the consultant after the treatment, it's a very long time ago now.

 

My memory is starting to fail, but they then put you on the clinic, on the oncology out-patient clinic, and I was going every month. Some people only go every quarter; it depends. They all seem to be different, and they treat, I think they do it slightly different now to what they did. And it, I think it varies from town to town as well, from every oncology unit seems to handle it differently. But I was going every month. They take a blood sample every month and an x-ray and then the following month you have a blood sample but you don't have a chest x-ray, so it was a chest x-ray. So it's every other month you have a chest x-ray, every month they take blood. They give you a physical examination every month, have a feel around the remaining testicle and abdomen and round the neck and just check that there's nothing going wrong.

 

 

I am yes. They keep you under observation for 10 years. As I say, they start you off on, I was on every month, and I think that was for about the first year, then it went to every other month and then quarterly, and it basically steps up until at the moment I now go once a year and, as I say, I'm in the 6th year at the moment, so I've got another 4 to do.

But even four years down the line, almost four years since I finished chemotherapy, you still worry. I'm having annual blood tests now, and from about a week before you have your blood test I find myself having difficulty sleeping and feeling quite anxious and uptight, and that doesn't go away until maybe a couple of weeks afterwards. But it's just basically because your subconscious, no matter how intelligent a person you are, you can't switch off your subconscious from worrying about something. It's a very, very difficult aspect to deal with. And I think in a certain way doctors and nurses could improve on that in terms of caring for cancer patients, it is the worry side of things. I think in the NHS our doctors and nurses are second to none in terms of the training that they've been given in treating people, but the psychological aspect of the illness I think could be dealt with a little bit better. 

 

Especially under, in a system that's under such a great amount of pressure, you know, you're going into the cancer ward and you're, there's a, on the days that you're going in for, like, just a check-up even, there are 15-20 other people all sitting there in chairs giving blood for their marker levels to be tested, and you're waiting for an hour, you're going in and giving blood and you're way home again and you're worrying about what the blood tests are going to show. There's nobody actually to sit down and speak to and ask you, well how are things, and that would really help, but that is almost an impossibility with the constraints that are on the NHS at the minute, you know, to have that facility.

Until then I was all right, you see. But the trouble arose with the following test, which took place in 2007, when the PSA reading had doubled. So I waited for another six months, took another test, and it had doubled again, and that’s when I started to get a little bit anxious about it. So I asked the GP, and he said, “Well, there’s still no problem about it. Don’t worry, because the levels are very, very low, you see”. He never told me exactly what the level was when I should start worrying medically, you see.

 

Yes, you see this level stayed down for all these years, six years, until June 2006 it was point three eight. In December two thousand and six it went to point five nine. In March it was five point eight, the following March. The following July it was five point six eight. So there’s not much difference. Then point eight two, then point eight five, so all of those four or five readings it had more or less, it had grown a little bit, but it had stayed down, and then in October 2008 it suddenly went from point eight five to one point four. So that was a big jump, you see, and then six months later it went from one point four to two point six. So you can see the climb, the steepness. December, six months later again, from two point six to three point seven. So I expected this last test, right, to increase by the same amount again, so I expected about five point two, five point four, something like that, you see, or even six, but it wasn’t. It was four point two. So I can’t make any sense of that other than to say I was relieved. Anyway… 

 

 

Yeah, yeah. I was looking at the percentage difference in the climb rate, and it went, at one point, it was eighty-five per cent higher in six months, and that frightened me, see, and now, of course, it’s much better. So some people might argue that you’ve got this information and you frighten yourself to death, but I don’t look at it that way. I look at it from the point of view of it’s like looking at the fuel level on your car. You’re driving along, fuel level is going down and you think to yourself, “I must get to a station before I run out of petrol altogether”. It’s that sort of attitude really that I’m adopting, and so I’m happy with four point two.

I know some GP services you have to, you can’t always see the same one, but I think it’s always important to try and see the same one so they’ve got a continuity of your history and what you are going through etcetera, because otherwise you have to explain it all again and you get, because I think the notes will say things but they’re not necessarily, you know, someone can’t, they’re not going to read the whole load of, I think mine are about this thick, so they’re not going to go through all those every time. So it’s good to try and keep to the same GP and try not shift about, but I know that’s difficult when people are moving around the country. 

 

I mean I’m fortunate, or not as the case may be. I mean this is one of the things that I said earlier about one of the effects has been that I have not moved away, and one of the reasons would have been because I would have been concerned about going to another hospital, another GP. Because by moving about you lose that continuity, and I think that’s really helped me and the service, and the support I’ve got. I think if I’d gone to lots of different hospitals and GPs they’d have all had different ways of dealing with me and I wouldn’t have got the consistency. So in one way it’s good that I’ve stayed, but in another way what it’s done is restrict my movement whether it’s for work or pleasure or…

 

I’ve gone on holidays but I’ve just not moved away. So I know a friend of mine recently went on one of these sort of seven week, like, you know, worldwide tours type thing, because she never did it when she was younger. And again, that would have been something I’d have done as a youngster but by the time I could afford to go I’d already had it once and my mum just wouldn’t have let me out of the country for a week to France, let alone round the world for seven weeks. So I’ve missed out on that. I might do it later, and most probably will, but I didn’t do it then, and I think a lot of things I didn’t do because people were worried that I would fall foul of something, whether it was, you know, an odd disease in another country, or the stress of travelling, or whatever it was. So that coupled with not moving away from home is, as I say, a two edged sword. It’s meant that I’ve had consistent treatment, which has been great, but there are certain things I’ve missed out on from that point of view, but I’ll make up for it I’m sure.