Marilyn - Interview 102

Age at interview: 62

Age at diagnosis: 54

Brief Outline: Marilyn was diagnosed with chronic lymphocytic leukaemia after having a blood test for something else. After 5 years of watch and wait she had oral chemotherapy. After 2 years in remission she had a different oral chemotherapy, which she has just finished.

Background: Marilyn is a retired charity administrator. She is married with one adult child. Ethnic Background: White English.

More about me...

Marilyn went to her GP about chronic pains in her arms. A blood test showed she had a raised white cell count. She was menopausal at the time and under a lot of stress at work. Three months later, after repeated tests, she was shocked to be told she had chronic lymphocytic leukaemia. She was quickly referred to a haematologist who explained what this meant.

 

Marilyn spent 5 years on watch and wait during which time she had consultations every six months. She obtained counselling sessions from the NHS to help her cope with the psychological effects of living with CLL on top of the depression that she had suffered with all her life. She continued with the counselling privately because she found it so beneficial. Marilyn felt she wasn’t performing well at work so decided, with great regret, to retire.

 

Five years after diagnosis Marilyn was feeling very tired and her blood cell counts indicated that treatment was necessary. She had six months of chlorambucil chemotherapy tablets. She had an allergic reaction to the anti-nausea tablets so continued without them. She felt very sick but got through it and entered remission.

 

Two years later the leukaemia started to come back and after putting it off twice Marilyn agreed to have more treatment. She has recently finished four months of fludarabine and cyclophosphamide tablets as part of a clinical trial. She had a bone marrow biopsy before starting the treatment and will need another now she has finished. Marilyn found it hard to cope with the treatment and it made her very depressed. She feels her recovery is slower this time but her energy levels have just started to pick up.

 

Marilyn is due to see her consultant next week and is looking forward to a few years in remission when she can enjoy life, because the last few months have been a struggle for both her and her husband. She is proud of herself for coming through her leukaemia experience and feels it has changed her outlook on life and made her a stronger and more confident person.

 

Marilyn found returning to her job a struggle after her chronic leukaemia diagnosis. She feels...

It was a struggle. I’m quite pleased the way I did manage my mind over it. Unfortunately, I did have to retire from work. It wasn’t really working out. I wasn’t coming up to my idea of what I was supposed to be doing. I wasn’t doing it well. I could go into more details but I think it’s probably best to leave it there. I felt quite sad retiring because I did enjoy my work and it’s quite hard to fill the hours of the day sometimes. 

 

And I think work was the most difficult thing. That I found very hard to have to give up that, found that very hard and it was quite a while before I could close the door on that. I felt quite indignant I suppose, in a way, that I couldn’t carry on the same as I was, and I suppose that that’s how the illness affects you unfortunately.

 

Do you think you were angry?

 

Oh, extremely angry. I felt very guilty, I felt very angry. I felt extremely angry at the work side of it because I felt it was just so unfair. And I tried never to say those words because I think if you consider something’s unfair that you feel as if someone else should have it. It’s what children say. But I felt it was unfair the work side of it because I was giving up something that I really liked. 

 

Marilyn gave up work after her chronic leukaemia diagnosis and is still finding finances tight...

When I had to actually give up work, well, in fact I decided to retire on health grounds, that was a little bit of a worry. So I investigated Incapacity Benefit. I thought, “Well, there’s no point in wondering if I was entitled to it. I’ll just do it.” Luckily, I was entitled to it, so that took over from my part-time salary, which was probably about half of what I was was earning. The firm I worked for were quite generous paying holidays and things like that. 

 

That was okay for the start because, again the work that my husband was doing was coming in quite well, so it wasn’t too much of a problem. When the Incapacity, when I was sixty the Incapacity Benefit stopped but then I got my pension. So again, things weren’t too bad. We were still running two cars, although every time we sort of had to get tax and stuff like that we kept thinking, “No, we can’t”. But to cut a long story short we ended up lending the car out to my daughter, so it was being used, so that was all right. 

 

By that time finances were getting a bit tight because my husband’s work is in the building trade and that was slowing up, basically. So that was a worry and it, I’ve never really got over not being able to earn. I felt very guilty about not earning. I felt quite useless when I had my good days, that I should be out working. But unfortunately I never knew when my good days and bad days were. So that’s quite difficult to cope with. You know, I hummed and hahhed about going out and doing a few days here, a few days there, you know, in sort of like a shop or something, but then the next week I’d start feeling tired, this was before treatment obviously. So I sort of wore myself out in the end, sort of being on this constant roller coaster of' shall I work, can’t I, why can’t I? So in the end you have to accept it. 

 

Again, finances were tight but not ridiculous. We still managed to pay the bills, have holidays, you know, go out on trips, do the things we normally do. It’s not good at the moment because the building trade and the housing market, which is what obviously my husband’s concerned with, is not good at the moment. And even though I might be in remission for the next four years, I just can’t see me going back to work. 

 

After 5 years of having her CLL monitored Marilyn, was feeling very tired because her white blood...

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 oxygen and iron 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. 

 

Marilyn found it was complicated taking all the necessary medicines alongside the chemotherapy...

So after about five years you started taking chemotherapy tablets. Do you remember what they were called? Doesn’t matter if you can’t.

 

Something, chlor, chlor…

 

Chlorambucil?

 

Yes, thank you, chlorambucil.

 

And tell me a bit about how you had to take those and how many and how often and…

 

I had to take seven tablets a day for eight days, which was quite a lot. And initially I was prescribed some sickness tablets, which are called mecan- [mm] I can’t think what they’re called. I’ve got them upstairs.

 

Doesn’t matter.

 

The first week after taking the sickness tablets I got a bad reaction and I got muscle reaction, so I was twitching, couldn’t breathe, which was very frightening because when I first started feeling that way I thought it was the chemotherapy, but it wasn’t, it was the sickness tablets. So the first week on my chemo was a bit traumatic because I got rushed into A and E to have whatever they, an antidote to the sickness tablets. That was a horrible experience but I was just unlucky. It was dealt with very quickly. So after that I decided not to take any sickness tablets. Then it felt a breeze after that the next week just taking my chemo. Did make me feel very sick, did make you feel, your head feel very woozy, was very unpleasant but I got through it without any sickness tablets. So I think I did quite well and I was quite lucky.

 

It was quite a lot of tablets to take in a day, so that was quite daunting. I took them all at once so there was no question about missing any or anything like that. And I don’t think I had to take anything else like anti-viral or anything with them, whereas my last lot of chemo I did; it was a slightly different one. So I had a week on the tablets then three weeks to sort of recover and then another back at hospital. And so every month I had to go back, have blood tests, quick chat to see how I felt, but they seemed to work quite quickly, the white blood cells started dropping but it took the six months for them to drop right down to what they were happy with, which was about seven, I think, and they’d been about 230, according to the, you know, small drop of blood that they take.

 

Tell me about this latest chemo, the fludarabine and cyclophosphamide. How many pills? How often?

 

Now that was, my husband did a flow chart on the wall because it was three days of three lots of fludarabine, three lots of cyclophosphamide. There were also anti-viral tablets to take. There were sickness tablets to take. And there were also, I can’t remember what they’re for, another sort to stop you getting pneumonia I think, which was co-trimoxazole. Can’t remember what that’s for but it’s something to do with infections.

 

So on day one took a sickness tablet about an hour and a half before the six chemo tablets. So we had to work it out so that, like that, so he did a fantastic chart on the wall, pen, tick it off. Sickness tablets, six chemo tablets plus an anti-viral, plus every Monday, Wednesday and Friday this other tablet which I think was to do with chest infections, oh and shingles, things like that, and herpes, that’s what those are for. So on top of that I was also taking my own anti-depressants and various things that I take. And then the rest of the week you just took the anti-virals and the sort of thing that was like an antibiotic. Then the next day was the same, and the next day was the same, so there’s three days where you take these multiple tablets. Oh, and I forgot, after the sickness tablet in

Marilyn is waiting for blood test results to find out if her recent chemotherapy for CLL has...

 It came back to an extent that this year I’ve had to have treatment again, four months treatment, slightly different chemo, slightly worse. Psychologically it affected me quite a lot. But again, as we do, I got through it with the help of everybody. I’ve now had my fourth chemo. I’m hoping that my blood results will prove that the leukaemia has gone. I don’t feel as well as I’d hoped to feel, but I think there’s lot of other things going on there. I think it’s, like, two, three years further down the line than the last time I was in remission, so I’m obviously slightly older. And I think this particular chemo was a little bit stronger and it’s taking me a lot longer to recover. 

 

I’m now hopefully looking forward to three to four years remission. I’m really looking forward to that because it’s beginning to tell on my husband and myself as to what this last four months has meant. It’s been a struggle for me and it’s been as bad a struggle I’d say for him, because being on the outside of someone, not being able to do anything physically to help them, is extremely hard. So I feel as if he’s gone through this with me really, which is, it’s fantastic to have someone by your side but you do feel very guilty about what you’re doing to them. So I think the next few months is going to be really uplifting and hopefully we’ll be able to get our life back on track and enjoy my daughter and my grandson.