And there are people who do all sorts of things and there is nothing really you can do. But the only thing you can do is just keep yourself fit generally so that if you’re going to be ill at least you’re going to be ill from a fit point of view not from a, oh, not walking very far or rather overweight person point of view, if you’ve got that option. Patients with CLL tend to be elderly, they tend to have a lot of other comorbidities, a lot of other things wrong with them, and that can obviously limit their lifestyle. But eating healthily most people can do that and most people manage to do it.

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.

Eventually I found an association called the Chronic Lymphocytic Leukaemia Support Association in the UK. I’d been diagnosed with the disease for well over a year when I went to my first meeting and it was the first time I’d ever met anybody else with CLL. And it was very reassuring to know that other people had the same problems. There were various solutions to things we could try. Just to know that other people knew what I was talking about and could possibly even help and assist.

Although chronic lymphocytic leukaemia is the most common form of adult leukaemia I’ve never met anybody with CLL outside of the CLLSA meetings or the UK CLL Forum where other patients go occasionally. It can be very, very lonely. I say that not specifically for myself but for the people who I’ve met at our meetings, and sometimes they’re almost in tears because it’s the first time they’ve ever met anybody else with the disease with the same problems. And it’s hugely enlightening for them to meet other people who can do that.

Matters came to a head when I went to the gym and apparently, my heartbeat was very elevated, so after, that had been like that for a few months and I’d given up caffeine and all the normal things one does, I went to the doctor and just said, I wasn’t really concerned, I thought I’d been overworking, could they just confirm that I had been overworking? And the locum doctor very kindly said she’d give me a complete work-up. She agreed with me that I was probably working too hard, perhaps a bit stressed. My father was extremely ill at the same time, which wasn’t helping things. And she gave me a full work-up and when I went back for the blood results she was obviously very agitated.

She referred me to a haematology clinic and unfortunately it took well over four months for me to get an appointment, by which time I was concerned because my fatigue had got worse, I’d had an episode of bruising and bleeding and I had a fairly good idea what the blood results that I’d seen on her screen actually meant, so I was concerned. At that time I didn’t know there was any difference between chronic leukaemias and acute leukaemias. When I finally got to see the consultant I had more bloods done. There was another five week wait before I went back and he explained that I had a condition called chronic lymphocytic leukaemia.

How did she find out accidentally? Did you not tell her at the beginning?

I didn’t tell her. I didn’t see any need to tell her at that point. I had had to tell my employer because I felt it was affecting my work, and the confidence leaked from one employer to another employer, which was very, very bad, and she was told by somebody in her school that there were so many people with cancer at a certain place, and she came home and told me and I said, You’d better sit down. It was very sad and I managed it very badly and I don’t know what else I could have done.

I would say to anybody with CLL if you don’t have to tell your employers or anybody but your immediate family that you’ve got a cancer, even in this day and age, it’s probably best not to. Even your employer, if it’s not affecting your work and with many people who are diagnosed they’ll be diagnosed on a routine blood test, they’ll be told about it, to them it’ll be a shock. it’s not affecting your work. It probably won’t affect your life expectancy. Who needs to know? Perhaps your immediate family. There are people out there who find cancer abhorrent and find people with cancer very upsetting, and it can work against you in the workplace. it’s a terrible thing. I hope it changes even faster than it has been changing, but it’s still there.

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.

Hows your husband coped with this?

He’s quite unhappy about it. He’s quite unhappy for me. He’s very phlegmatic about most things. He is unwell himself, so basically some Saturdays we just sort of sit there saying, Make the coffee. No, you make the coffee. Whos got the energy? One of us has got to take the dog for a walk. We just muddle through. We’ve been married for a good few years and we just muddle through. He’d rather I wasn’t ill. I’d rather I wasn’t ill and I’d rather he wasn’t ill, so you make the best of what you’ve got really.

Is he a good support to you?

Oh, yes, when I am ill he’ll make sure I’m okay and I have to try and keep an eye out for him. I think the difference is when women are ill they do finally say, Look, you’re going to have to get me a drink, I feel so awful I can’t make it down to the kitchen. And sometimes men sort of think you’re going to realise they’re really bad by telepathy, so the poor man can be there for an hour before I realise he really would have liked a drink, or he’s sweating a lot, needs a change of pyjamas or whatever. it’s all a bit sad.

What’s his illness?

He has COPD, aspergillosis, asthma. At the moment his aspergillosis is quite bad and it’s a very unpleasant infection.

The first few months of being retired or semi- retired were very difficult. I eventually learned to pace myself so if I want to do something specific, like I want to go to a pilates lesson, I will make sure that I go to bed early the night before. I will be prepared to have a quick meal and a nap when I come home after it. I don’t always have to do so but I have to plan my life a lot more carefully than I did before because of the fatigue.

So what would be a typical day for you in terms of how much you could do and your energy levels?

Over the week I get about half of each day. I might get the whole of one day and not really be inclined to do much on another. If I’m not inclined to do something I’ve stopped berating myself with being lazy and just sat back and done very little, done the basic and let the world flow past me. So on the whole I get about half of a day to do something exciting like do the gardening for a little bit, you know, not heavy digging or anything, just weeding or whatever. it’s easier if I’m working on the computer but again I’ll reach the point after about three hours where I’m too tired to make any sense of what I am doing so it’s best to stop. it’s better to have a break and see if I’m better later and if I’m not better later then go for an early night, start again the next day.

But no, I was very cross. I’ve got an awful lot I want to do. I’d never even considered retiring at this age and it’s limited what I can do. So while I make the best of what I can do I sometimes get a little bit peeved that there could be more that I could be doing for myself, for other people, for my family particularly, that it’s limited me, so just cross basically, bad tempered, grumpy so
Tell me about how it’s limited your daily activities.

I have to plan and I have to be willing to not do things. I can get up knowing that I should go, for instance, shopping for something and just realise that there is no chance that I’m going to do it. And go around, do the minimum, go back to bed with a cup of coffee and then find I’ve fallen asleep reading a book, wake up three hours later. it’s very pleasant to be able to do that. it’s much better for me to be able to do that without having to drag myself out to work. But it is limiting, but there we are. Alot more fortunate than some I’m sure. Sometimes you find you’re tremendously with it in the middle of the night, particularly if you’ve had a bad week and you’ve had a lot of sleep and you suddenly find there you are two oclock in the morning, you’ve got all the energy in the world and you’ve missed three things you wanted to do in the past four days. And that’s a bit irritating, but that’s when I go on the net and do some work for the CLLSA or just talk to people around the world. So at least I can still do something; thank God for the internet.

So with the two of you not too well do you have any help around the house and garden?

Some friends come up occasionally and do gardening for me about once or twice a year. Other than that we try and set things up so they’re easy care. You know, we don’t have carpets, we have hard floors. Any furnishings we have will go through the washing machine. Basically if something looks pretty but it’s got a label on it that says, You must do X, Y and z, then we go somewhere else and get something not so pretty that’s easier to take care of.