Marie - Interview 18

Age at interview: 69

Age at diagnosis: 53

Brief Outline: Marie was diagnosed with chronic lymphocytic leukaemia after pains in her bones and groin. After two years of watch and wait she had several courses of oral chemotherapy with remissions in between. She is currently well but expects further treatment. Marie was also interviewed for the clinical trials section of this site.

Background: Marie is a housewife. She is married with two adult children. Ethnic background: White British.

More about me...

On her return from living in Africa in 1989 Marie developed pains which her GP attributed to the change in climate and possible rheumatism. A year later a pain in her groin prompted the GP to do a blood test. Marie was referred to a consultant who told her it was chronic lymphocytic leukaemia. She was shocked and assumed it meant she would die but was told that her disease had been caught early so would be monitored with regular blood tests and she should get on with her life.

She spent two years ‘watching and waiting’ during which time her symptoms became more troublesome and she began to feel tired. She was then given two courses of chemotherapy tablets called chlorambucil, which got rid of her symptoms without producing any side effects. After another two years she had another six months of chlorambucil. She was also given steroids which gave her lots of energy but caused weight gain. She was diagnosed with diabetes but cured that through dieting. More chlorambucil followed.

 

Three years ago her body failed to respond to the chlorambucil in the usually way so she was given FluCy (a combination of fludarabine and cyclophosphamide), also in tablet form. The first course made her feel better but a further two courses had no effect so the planned fourth course was held back for another time. She was well again for fourteen months but then began to feel tired, had pains under her arms and a lump formed in her neck and she had no immunity to infections.
 

Marie’s consultant invited her to take part in a drug company-run clinical trial of a new monoclonal antibody called HuMax-CD20. She tentatively agreed to take part but after reading all the details decided against it. She was therefore given her fourth course of FluCy along with blood transfusions and antibodies to boost her immune system and now feels well again. When her symptoms return next time she is expecting to be given a different chemotherapy administered intravenously. In the mean time she continues to get on with her life.

Marie was also interviewed for the clinical trials section of this site (see Interview CLT25).

Marie was so shocked to be told she had CLL* that she didn't take in any details and assumed she would die. When she later asked her GP questions he reassured her that she could get on with her life.

I went to the local hospital in 1992. I was called in by the consultant who informed me, “You have CLL, a form of leukaemia.” He explained that I would probably live to a great age, but frankly I didn’t take anything in. It was a shock that I’d just been told that I’d got leukaemia. I also had lots of mixed feelings that I’d just come back from Africa and it was decided I should come back because I thought if I stayed too long I wouldn’t get employment here, I’d be too old. I’d just settled in a job. I met my second husband who was then not married at the time, and I seemed to have everything to live for. And all of a sudden I couldn’t see anything but I was going to die.

  

He then said would I like a few minutes to ask questions and I couldn’t ask one. I was just too numb. I came away and my husband was very upset and I suddenly burst into tears. I was going to die and I’d got a little grandson who was two. I wouldn’t be seeing him grow up. I don’t know what would happen to my daughter because she’d be alone because her partner, well her husband had left her when my grandson was six months old and I was the only support she had. I was looking after my grandson at intervals, and my world fell apart. I talked it over with my daughter and I rang a friend who was a nursing sister together in Nigeria and we worked together here. And she burst into tears.

 

So everyone around me was crying and it didn’t help me but made me feel miserable. I went to bed and I decided, “Right, this is not going to beat me.” I wish I’d asked lots of questions and I didn’t ask any. I made an appointment to go back to my local doctor and the list of questions that I could have asked the consultant and didn’t, and everything was explained' that it might take some time before the CLL needed treatment, that I was at very, very early stages, and that I should, basically, get on with my life, have regular blood tests and it’s hard but forget it. And I made up my mind that was what I was going to do.

Marie's body would suddenly go to jelly, she forgot what she was doing, and would have to rest.

So you mentioned tiredness as well. That’s one of the symptoms you get these days sometimes.

 

Yeah.

 

Can you describe the tiredness to me?

 

Because I’m very active, I will be dashing around and all of a sudden my body refuses to work. I can’t remember what I’m doing, my memory sort of gets, I can’t remember anything, and my muscles and all over my body just feels as though it’s like jelly and I have to go and sit down. And if I sit down I can normally sleep for about two hours, which is unusual for me. When I wake up I’m fine but then I have to know my limitations, so when I’m getting to that stage I will spend a lot of time resting in the afternoon. I pace myself, do my jobs in the morning when I’m fit, in the afternoon I will sit and have a rest, then I’m fine. But it’s generally your body won’t work and you get a fuzzy brain as well.

After living with CLL* for 16 years, and having had several courses of treatment with remissions between, Marie now recognises the symptoms and knows her body.

But you had a couple of years of watching and waiting before you had any treatment didn’t you? What was it like being on watch and wait?

 

When I’d accepted it after the first month I sort of got a built in strength that I didn’t care, and it wasn’t going to, I wasn’t even going to think about it. In fact, all the way through I have never ever thought about it until I know that I’m getting a bit tired where I’m not concentrating very well. And I get a pulsing in my head and I think, “I’m in trouble. I need help.” Then I will have a blood test. And also as I’ve gone on I’ve realised that I’m bruising all over my body and I then, because of experience now I know platelets are going down. So it’s only after years of having it I know the symptoms. Bruising, it has to be platelets. Pounding in the head, it has to be the red cell count going down, and the fatigue it means the white cells are going up as well. So I begin to know what’s happening to me. I know my body now.

Before her CLL* diagnosis Marie experienced pains in her neck, arms and legs, which her doctor thought was rheumatism. She later developed a nagging pain in her groin.

1989 I began to get pains in my body. I wasn’t quite sure what it was. I put up with it for a bit. I went to my local doctors. He thought that it was because I’d returned from the tropics and I was facing the cold winter and this is the cause of my aches and pains. He also thought it could be a form of rheumatism and treated me accordingly. But then a year later, I developed a pain in my groin.

 

Right at the very beginning of your CLL was your only symptom a lump in your groin, was it?

 

No, my first symptoms were pains in my neck, pains in my arms, pains in my legs, so much so that they thought I’d got…

 

Oh, rheumatism.

 

A rheumatism, a form of rheumatism. It was only a year after that the pain in the groin started, the right hand side of my groin, very low down in my groin, and it was then I think my local doctor at the time, I think alarm bells were ringing. And I think he knew what I’d got even before I did.

 

What was that pain like?

 

It was just as if you’ve been running very hard and you’ve got the stitch. But that’s the kind of pain it was. But it didn’t go away. It just nagged and nagged and not a sharp pain, just a nagging pain and I just knew that that there was something else wrong.

Marie worked on boats until her CLL* symptoms started to affect her and she found the work too physically demanding. She gave up work at age 64 but returned 2 years later before retiring again.

Were you still working when you got your diagnosis?

 

Yes.

 

So how did your illness affect your work?

 

Well, when I was first diagnosed it didn’t affect my work at all because I wasn’t having any treatment and it wasn’t bad, and I was working continually. But then when I started my chlorambucil, just before I started chlorambucil I found that, at the boat yard we used to turn 29 boats round on a Friday and on the Saturday there’d be about 20. Monday the same thing. And before I could get through Saturday, Sunday and Monday without any problem, but then I began to find that I was absolutely exhausted climbing on and off boats. And I was having back trouble and leg trouble, all sorts of troubles because of the jumping, and it was then I realised I was getting near my treatment so it was beginning to affect me. I found when I was stock-taking I didn’t always count right. I had to keep going over and over what I was doing because I couldn’t get it right, and little things like that, so it did begin to affect me and I finally told them, I was working at [town] at the time, and I told them, “I think it’s time that we trained somebody else. I think I have to go”, because I just couldn’t cope any more. It was too stressful and too much like hard work.

 

Yes, I gave up work finally and I started looking after my grandson. I did go back three years ago to a nearby boatyard. They came and asked me if I could be supervisor because they couldn’t get anybody to do it and they knew that I was already trained to do it, and I went down and did a year with them. But I had to tell them that there was no way I could go back and do it again. Apart from the fact I was so much older to be doing that kind of work.

Marie had two months of chlorambucil with no side effects; it reduced her white blood cell count and stopped her tiredness. Two years later she had 6 months of chlorambucil, which worked again.

It was diagnosed in 1992 and I think it was in 1994 when I was finally told I’d got to start my treatment. I went to my local hospital and saw the consultant and he told me that I would be on chlorambucil medication. I asked him, the first thing I asked him, “Will I lose my hair?”, because that petrified me. And he said no, I wouldn’t lose my hair. My hair would thin. I would have fourteen days of chlorambucil and fourteen days off. I would then have blood tests, see him in a month’s time and start all over again, and it would last for six months. I started the chlorambucil. I sat imagining all the symptoms that I read in the packet and decided that I wasn’t reading any more. If a symptom came up I would then look at the packet but not read them all and get depressed.

 

The first fourteen days, because of the fear of all the symptoms which I thought I might have, I panicked. I had fourteen days off and forgot about it. I went back and started my second month of fourteen days and I can honestly say I didn’t have any problems whatsoever. I had no side effects. In fact, sometimes because of no side effects I sometimes wondered if I’d actually taken them and I had to keep counting my pills. I got through that. My white cell count came down. I was fit again. I continued my job. The tiredness left me, the aching bones left me and I went for six-monthly check-ups.

 

I think it was two years and I had to start again, and this is what life was. Six months of chlorambucil, fine again, fit again. I didn’t lose my hair, in fact my hair grew like a train. The steroids made me go mad in the house. I painted everywhere bright colours and decorated every single room in the house. I tore the garden apart. I had so much energy it was wonderful, but I gained a lot of weight.