Interview 04

Age at interview: 69

Age at diagnosis: 63

Brief Outline:

Diagnosed with prostate cancer in 1994, TURPs in 1994 and 1996, external beam radiation, hormone treatment 1997.

Describes his initial problems accepting the cancer but then how he became much more focused.

Going back to the Cancer Information Centre, this is when I first realised that I had cancer and I think for the first fortnight I was a bit unbearable to live with because I could not accept it myself, I didn't want to accept it. But I think after a period of a fortnight you sort of take yourself away and give yourself a damn good shake and say 'Come on get cracking and start living.' And we did, my wife and I went off to Canada on a holiday and it was a hell of a job to get the insurance but it was well worth doing it.

Advises people to set goals and keep fighting.

Don't give up, just fight it and keep fighting it. I set myself goals. The first thing I wanted to see was my wife's 70th birthday, she's older than me, now I want to see mine which is next year and then I shall set myself another goal. I set myself yearly, annual goals trying to achieve, which is fine. And one other thing, I've got a mountain bike which is quite fun and I cycle around on that, not too far, I suppose the most miles I've done is about 10 but that's good, it's good fun. 

Describes living with a permanent catheter.

There was a time when I had to go through and do self catheterisation, this is not funny, actually it's very difficult and very hard.

It was given to me because it was very, very difficult to pass water even then and at that time you needed something to keep you going. And in the end, I had to have a catheter in with a bag on my leg and I've got this today and I shall have that basically for the rest of my life.

You have the bags which I keep on usually for 1 week, sometimes less. You have to be very careful that they don't burst. You must, or I wash mine every night completely through, cleanliness has got to be now, there isn't the time when you can come home tired and say 'I won't bother to wash,' you've just go to do it, it doesn't matter how tired you are, or that's the rules that I make for myself.

Can you explain how you wash it please?

Yes it's quite simple. Remove the bag which is easy to do and leave the catheter in of course. You empty the wee down the toilet, then I've got a funnel which I put on the end of the bag, making sure the bottom tap is turned off (laughs) because if you try and fill the bag up with water as I've done a couple of times then it all goes over the floor. And this is what I do, I wash the bag out, if I have any slightest doubt of the waterproof of the bag then I dump it and put a new one on. There is another thing which you're going to come across before long and that is when you forget to do up the tap after going out to the toilet at night or you knock it when you're in bed or it comes undone between the catheter and the bag. When this happens it goes over the mattress, and you wave bye-bye to the mattress because of course no way can you clean it, it just happens and it's one of those things. Another thing also that can happen is when you're out and again you forget to do up the tap and you're walking along and you think 'my foot's wet, why?'and again you haven't done up the bag so you get used to it. You just go to the nearest convenience, you take your shoe and sock off, wash your sock, ring it out and put it back on again.

So how often do you get a new bag?

I usually go 7 days for a bag but as I said if you've got any doubts of the bag then you dump it and put a new one on.

So you can do that yourself?

Oh yes it's a very simple connection. I find that I strap the bag just below the knee on a long lead or a long tube and this I've found is the best way of doing it, there's no way out as far I know.

And how often do you have to have a new catheter put in?

You should have a new catheter every 2 to 3 months. I try to get mine to go as long as possible because it's something that I do not like having done. You've got, when that catheter, new catheter is being put in you've got 5 minutes of pain but then it's only 5 minutes and you get used to it, you have to.

I don't sleep through the night. I usually get up about 3 or 4 times, a good night is getting up twice, that's a good night. But then again I would worry about going through the night because I think that I'm pretty certain the bag would burst again. You can get bigger bags and some people do this and have them outside the bed, I've tried it and I couldn't get on with it so I leave it strapped to the leg.

With the catheter you are more than likely to wet the bed so, because the bag has let you down. So therefore my advice is that you get a waterproof sheet to put on the bed, put a blanket on top of that, then the sheet, the normal sheet and then you can buy from Boots a blue short pad about 2 foot 6 by 3 foot 6 which you put on the bed. This is very, very good because it absorbs a lot of the liquid should anything happen.

Explains the radiotherapy process and gives advice to others.

My next effort or result with what was happening was that I was then to have a series of 27 to 30 shots of the radio therapy. This is a horrible thing to go through. First of all you have a little dot put on your tummy so that each time they can set the machine up and they can find this tattoo mark and then the machine sort of lifts itself up, you're steady and it goes round you and then clicks off. You are alone in this room but you haven't got anything to worry about because you can look through a window and see the nurses there. 

They are very, very good indeed, they are very helpful. And when you are going through this series of radiotherapy you certainly need somebody, not only with you because you won't be able to drive or anything after it, you'll have a hell of a job to even to walk 100 yards, but it goes, it goes. Also in 97 I then started going to the pain therapy doctor and this is when you start taking your pills of morphine, and other ones which you will come across in time. Another, going back to the radiotherapy it is most difficult really to explain how things are. You will be very down, everything is such an effort to do and if you're not careful you could say 'Damn it all I'm going to give up,' but don't give up, its not worth it because there's plenty left later on. 

Describes his experience of the Pain Relief Centre.

I went to the Pain Relief Centre at the hospital and then I started on pills. Pills are things that I've hated all the way through my life but unfortunately I now have to take them. I take 2 in the morning, 2 midday and 6 in the evening. Those are mainly of morphine, and other ones which you will come across in time. 

At the Pain Clinic also I, with the pain specialist, worked out the medicines or the pills that I should have. This takes some time because you can take too much morphine or too little and it doesn't work and of course with this you do become ill and sick. But once you've balanced the number of pills and the correct amount of pills then it seems to work extremely well.

Do you suffer any pain at all at the moment?

Unfortunately yes it still comes usually at night when you get into bed and you sort of lie down and then it comes and you just have to get up and hope it goes as quick as possible. I suppose it lasts about quarter of an hour, 20 minutes. Not every night.

In which areas do you suffer pain, which parts of the body?

It's the area where all the nerve ends go to on a man.

So do you take some pills to help that?

I've got the pills, quick reacting pills the thing is that you just put up with it, but there we go.