Len - Interview 27

Age at interview: 79

Age at diagnosis: 78

Brief Outline:

Len was diagnosed with chronic lymphocytic leukaemia from a blood test taken as part of a routine BUPA health check. An ultrasound scan showed his spleen was enlarged. Len has no symptoms and visits his consultant every few months for a check.

Background:

Len is a retired chartered accountant. He is married with two adult children. Ethnic background: White British (born in South Africa).

More about me...

Five years had passed since Len last had a BUPA health check so he decided he would arrange another one. A blood test was taken as part of the check and the doctor telephoned him afterwards to say he was not happy with the results and that he should see a haematologist. Len pressed him to tell him what was wrong and was very shocked to be told he had chronic lymphocytic leukaemia (CLL).

 

Len panicked and asked for an immediate appointment with a private haematologist and got one the next day. His blood was tested again and the diagnosis confirmed. The next day he was sent for a scan to check if his spleen was enlarged as the doctor had been unable to feel the spleen clearly because Len’s body was covered in lipomas (clumps of fat cells). The scan confirmed that the spleen was enlarged.

 

In the meantime the haematologist had explained to Len that his leukaemia had been caught in the early stages and there was nothing to be done about it. Len visits the haematologist every few months for another blood test and the results are still the same. Len finds it difficult to understand how he can have cancer, which to his mind is a terrible disease, but have no symptoms and not need treatment. He has looked for information on the internet, which hasn’t satisfied him. He is very frustrated and desperately wants to talk to someone else with the same condition to find out what happens. He also wonders why the leukaemia had not been detected previously as he had been having regular blood tests to check his cholesterol level. He is thinking about finding a consultant who is an expert on CLL in the hope that he would learn more details about his condition.

 

Len has carried on with life as normal except that he and his wife no longer spend the whole winter abroad because he can no longer get travel insurance for long trips. He has told his family and close friends about his leukaemia but otherwise doesn’t publicise it as there is no point. He sometimes regrets having had that health check because he might have been better off not knowing about his leukaemia until he developed symptoms.

Len panicked after pressing a doctor to tell him the diagnosis over the phone until he learned the next day that his CLL* may never need treatment. He would have preferred not to know about it.

Can you tell me a bit more about how you felt when you were told you’d got leukaemia? You said you were shocked.

 

Well, it’s a shock obviously because you suddenly realise you’ve got cancer. And that’s why I really was shaken. And that’s why I was desperate to get to a haematologist. I really couldn’t wait. I just took the first appointment that I could get. It didn’t matter who or where or what it was. I had to get to see a haematologist fast. So yes, I was pretty shaken and you think, Lord knows what you think, you know, leukaemia, of all things to have, leukaemia. You think the end of the world has come, you know, this is terrible. And it’s only when I saw the haematologist and he sort of calmed me down, in a way, by saying that nothing’s going to happen, you can’t treat it, you can’t do anything about it, you just watch it and you’re only in the early stages. And from that point of view he did calm me down because I began to realise that it wasn’t as traumatic as I thought it would be. I thought, “Here I am, you know, chemo and all sorts of things, what’s going to happen to me?” You don’t know. You just don’t know what’s going to happen. And once he explained it, well, he explained it technically all about the blood and the platelets and the lymphocytes and all that sort of thing, which I didn’t understand. I don’t even want to understand it. It doesn’t matter. It’s not relevant.

 

Do you ever regret having had that health check and getting the diagnosis?

 

Well, I suppose so in a way because I wouldn’t have known about it and I would have carried on merrily. It wouldn’t have even changed my life because I haven’t changed my life except for this Tenerife thing. Do I regret it? Well, I suppose so, yes. If I hadn’t have done it I wouldn’t have known about it and we wouldn’t be having this interview. Yes, I suppose I do regret it.

 

You don’t feel that actually it’s a good thing that you know even though nothing can be done at the moment?

 

While I have no symptoms, no I don’t think it’s a good thing that I know. If I had symptoms then obviously I would need to know. But because I’m perfectly fit and healthy in my own way and I do whatever I want to do, knowing doesn’t help me.

Len found it hard to understand how he could have cancer, yet it wasn't making him ill and he didn't need treatment. Watching his blood counts and waiting for his CLL* to progress was horrible.

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.

Len told his grown up sons about his CLL* diagnosis and that it shouldn't affect his life in the near future - sparing them the trauma that he had experienced before he had understood this.

What was it like telling your children?

 

Well, I told them as quickly as I could. First I went to see the haematologist, then I went for the scan, then I went back to the haematologist. And it was only at that stage, when it was all confirmed and everything was absolutely confirmed, that I told them. I asked them both to come and see me and I told them. They, well, I think they were, you know, they didn’t react. But I told them the whole story so that they knew that it wasn’t going to happen tomorrow, and that I wasn’t going to have any treatment and that I would just be carrying on with life. So it wasn’t as traumatic for them as it would have been because we told them the whole story. Whereas when we were told we didn’t know what to think. But when we told them we’d already sorted ourselves out and so we were able to give them an easier picture of it.

 

And of course they both went home and they looked it up on the internet and that helped them a little. But they couldn’t make up their minds whether to tell the children or not. As far as I was concerned it was up to them. They must know how to deal with their own children. But they both decided that the children should know, so they both told the children. Children never mentioned it to us. Nothing has ever been said but they all know. But nothing, we don’t talk about it, deliberately or otherwise, it doesn’t come up.

Len has six-monthly check-ups at which blood is taken and he is examined for swollen lymph nodes and spleen. His consultant is pleasant and methodical but not empathetic.

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.