Of course, in the meantime I mean I’d been having talks with him and he was telling me that there’s no treatment for it. That’s why it’s called chronic and it’s just, there’s nothing we can do until we get into very late stages when they do try chemotherapy but only if it’s absolutely essential otherwise as far as he’s concerned there’s no treatment. Well, I can’t say I was very happy about that because bad enough to know that you suddenly find you’ve got cancer but they’re not going to treat you. It takes a bit of digesting and I don’t think I’ve fully digested it even now, because I went back to him again four or five months later for another blood test to see the progression and really it hadn’t moved. And then I went another, the last time I saw him was about May or June and again the results were stable, to use his word. He said, It’s stable. So but the typical diagnosis of the CLL is there, the platelets or the whatever you call them, I’ve got all the results there if you want me to record them but I’ve got it all. And it certainly is over the top in some cases and under the bottom in other cases. Where it should be a certain level, some are over and some are under, and it is definitely CLL. And again he said that it’s sort of the early stages of stage two. No treatment, nothing, no pills, no hospital, no nothing, absolutely nothing, nothing can be done.

Well, I’m not, I’m still not very happy about it but what can I do? I mean the man is a haematologist, I can’t do anything about it.

It’s not something I understand because if you’re ill you’re ill. And I’m not ill, but I am ill. So it’s not something I completely understand and that’s part of the frustration. Because all the friends that I know that have got cancer, they’re ill, and they really are ill and we keep losing them, you know, my wife’s just lost her best friend a couple of weeks ago. And it’s one of those things in life that people do have cancer, they get ill and they die. Some of them recover but eventually it comes back again and it’s a horrible thing. And I’ve got one of those, I’ve got it, but it doesn’t show, it doesn’t affect me, so what can I say?

So really the crux of your not understanding is how can you have cancer but it doesn’t make you ill?

And you can’t do anything about it and you’ve just got to accept it. Well how can you accept it? You can’t just accept it. Well, you can, I mean you have to, but it’s very frustrating.

But the main thing was he told me that there’s nothing they could do about it. We just wait and see, this thing that they call wait and see is a horrible thing. To go to a doctor and he says, I can’t do anything for you. You’ve just got to wait and see. Wait and see what? Wait until it get progressively worse, that’s what you’re waiting to see. So it’s not a pleasant experience to wait and see because you know it’s there and you know it has been progressing over the past few years because I’ve got the statistics to show it. Okay, so for six months I’ve been stable it doesn’t mean to say it’s stopped. It’s obviously going to carry on and it’s going to get worse and eventually it will start showing symptoms I presume.

I think it hit me much more in a psychological way because having leukaemia, having a blood cancer is totally different from having something like breast cancer where it’s so much more physical. Having a tumour is physical, so it felt like a very invisible disease, which is quite difficult when you want to tell people that you’ve got this and from the outside you don’t look any different from the day you didn’t know you had it to the day that you know you have it. That’s quite hard to take yourself let alone to have to tell people. So you’ve got this quite difficult thing about wanting to tell people and not wanting to tell them because you haven’t really got anything to say because you’re watching and waiting, which is quite a difficult thing, I think, for cancer patients. Nobody wants to rush into chemo or radiotherapy but at the same time you feel as if you need to be treated. You know, if you had a broken leg they’d put it in a plaster and you’d hobble about for eight weeks and then you’d be all right. With leukaemia and chronic leukaemia you can’t do that.

But I think it is a strange situation watching and waiting, and I’d never really thought about it before. You feel in limbo, you feel as if you almost want something to show that you’ve got leukaemia, which is a very strange state of mind, whereas if you’ve got a broken leg or a broken arm, you can sort of, people know immediately. That’s quite a strange thing to want people to know. I did get over that after a while. I didn’t have this awful sort of, I suppose it’s a guilt feeling because you’ve got leukaemia, you’ve got cancer but nobody can tell and they’d just think I was miserable. I think that’s a lot to do with it. You know, if you meet people that you hadn’t seen for a while, do you explain your situation or just say, Yes, I’m fin? That’s quite hard.

Tell me about what it’s like to be put on watch and wait at the beginning.

Well when you’re first diagnosed you have so little information and so little knowledge and nobody wants to tell you anything in case it frightens you, which frightens you even more if you want to know something. So you get the various books from the various organisations and charities and they tell you the bald facts, which probably frighten you more because they’re written by professionals not by people who are actually experiencing it. And if the watch and wait to begin with, as I have found with several people that I support, they just find it very, very difficult. Because you have nobody to contact if something occurs and you think, ‘Well I’m not going to be seen for another six, nine months, who do I contact?’

So you go to the GP and with the best, and I do have two superb GPs, and you ask them and they say, ‘I’m sorry I don’t know. You’ll have to ask the specialist when you finally see them but I don’t think it’s worthwhile kind of making another appointment yet. So there’s nobody you can ask, and even when you contact the various charities they all, as is correct, say, ‘Well we’re not really able to give out medical advice. So who do you ask? Watch and wait is a form of water torture I think actually. If there were nurses available that you could phone up and say, ‘Look. I’ve got this problem. Should I expedite my next appointment, or is it safe to wait, or could I just come in and talk to you?’ But there’s no back up as far as I’m aware. No back up whatsoever.

So they don’t say, you know, ‘If you’re ever worried you can ring up the clinic’?

No.

No. Mm.

In fact at the local general hospital there was nobody actually called a leukaemia nurse there. I think they’ve finally got somebody who is part time who works three days a week, 9.30 until about 2.30 and working mainly in the chemotherapy unit, which is appropriate but, you know, even watch and wait on low grade you still have your worries.

So what’s it like being on watch and wait all this time? What’s it do to you mentally?

I don’t know really. I think it’s an awful lot easier now when you’re in touch with other people. And there are sites in the world you can go to and you can really blow off steam, and you find that other people feel the same way too, and that helps an awful lot. Because I think your partner probably knows what you’re going through and what you’re feeling but very few other people do. And if you try and explain to friends what you’re going through and the fact that you’re still waiting for treatment, and when you have treatment you know you’re going to have treatment again and wait in the meantime, they get puzzled and they don’t understand that it’s slightly stressful. Talking to people is the best thing because then you can sort of get it off your chest and feel better about it. it’s sad and it’s really rather horrible saying you know you’re not the only ones, that you feel better, but unfortunately that’s the way it works, for me anyway.

So how often do you have to go up to the hospital to see somebody about your leukaemia?

Alex’ Every six months.

And what do they do when you go there?

Alex’ They weigh you, blood, and then we go and have a chat.

Doreen’ To check him.

Alex’ Oh, they’d feel around you.

Oh, they check you for glands.

Alex’ Yes.

For swollen glands.

Alex’ For glands, yeah. Some do and some don’t. The thing is I don’t see the consultant himself very often. She’s usually the one whod help us out. Whatever.

So did they ever find any swollen glands or anything when they check you?

Alex’ No, they’ve never found anything like that, or my own doctors.

Yeah. And do you follow the results of your blood tests yourself or do you just leave it to the doctors?

Alex’ Leave it to the doctors.

So as far as you know it’s all just still the same?

Alex’ Just the same, yeah.

So would you know what to look out for
Alex’ No.

n terms of symptoms? So what do you expect to happen, if anything, with your leukaemia?

Alex’ No idea.

And you don’t care.

Alex’ I don’t want to know. Well, you can have it if you’re okay today and in six months something’s happened. A lot can happen in that time they told me.

Yeah. So you’ve had quite a lot of health problems in the last decade or so.

Oh aye.

Doreen’ In the last six years, yes.

Alex’ Yes.

So in the grand scheme of things, how important is the leukaemia to you?

Alex’ Very unimportant at the moment.

So how often do you have to go and see the consultant?

Well, the last time I saw him he’d booked an appointment for six months. So he’s just watching the onset of it but six months from the previous appointment there was actually no change.

So what happens when you go to see him?

He takes my blood test. He takes the blood. He sends it up to the pathology department. For ten or fifteen minutes we talk about nothing and then the blood test comes, the results, they phone him through the results. He writes them down. I write them down as well because I’m watching it as well, and I’ve got a little table showing me how it’s progressing. And we make another appointment for six months and we go home. And it’s frustrating.

And what’s your opinion of him?

Not much. I mean he’s okay. He’s a very nice fellow but his bedside manner is not marvellous. And that’s one of the reasons that I want to change because he’s not sympathetic or anything like that, he’s just doing his job. He’s methodical. He’s a very nice fellow, nice young man and we talk while we’re waiting for the results, we talk. He does examine me, you know, he looks for lymph nodes and the spleen and all that sort of thing. I said to him last time, Do I need another scan for the spleen He said, Well, no, not really necessary So but that is the one thing that I think, apart from the spleen he would have almost written me off, it was, I’m wasting his time. But once he got the results of the enlarged spleen then he realised that it was more serious than he thought. And he immediately moved me from category one into category two.

Through all this time I didn’t have treatment. I was very lucky that I went on to a website literally the day before I saw the consultant for my results, and came across a piece on CLL Topics about chronic lymphocytic leukaemia, which said that it wasn’t really necessary to treat until the disease reached an acute stage and that it wasn’t usually a good idea to treat in early stages. So although I didn’t know what stage I was at, I did have that one little snippet of information which was stuck in my mind. I went to the appointment when he told me the diagnosis and he immediately said that he had plans for my treatment. And I asked if perhaps it was necessary and if we could wait, and I’m still waiting all these years later. Luckily, I’m still not in an acute enough phase to warrant treatment yet. it’s coming up fairly soon but not yet.

So what made them decide that you needed treatment after those five years of watching and waiting?

The white blood cells go up, which make the red ones that, they crowd the red blood cells out, and you obviously need your red blood cells for iron and oxygen in your blood. And also it reduces your haemoglobin, which is your anaemia levels. And you also get very, very tired because your body is, you’ve got platelets, you’ve got white blood cells, red blood cells, and if you’ve got an imbalance then you’re going to get very, very tired, and the anaemia levels went down to quite a low level. And also the red blood cells were going down as well. So after about five years, and I was getting very tired, they decided that it was probably the right time.

It was a definite watch and wait for the first five years because they don’t want to give treatment unnecessarily because if it’s done too soon it’s not going to be enough and you’d need it again in another eighteen months. And they also look at a very holistic approach. They don’t just look at the blood cells and numbers. it’s not just number crunching, it’s how the actual patient feels. And I was beginning by then to get very, very tired. So they thought that in 2005 that was the optimum, with all the blood readings and how I was feeling, that that was the best time to start.

And then obviously the nearer it got to having it then you worry about having treatment. But you felt that they gave you very positive feedback on the effectiveness of the treatment, the fact that it had been going on for something like forty years, the fact that someone in my position, who was reasonably healthy, stood a good chance to respond to the treatment well. So there was quite a lot of information. But I think by the time the five years was up I was ready because I was feeling desperately tired, and obviously if you get very anaemic then you’re going to pick up all sorts of things, so that’s something they obviously don’t want. They want to try and avoid that.