Marilyn - Interview 25

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 administrator for Oxfam. 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 felt that her CLL* was invisible and that people who she had not told about it would not understand why she felt miserable.

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 fine”? That’s quite hard.

Having found inner strength to deal with her leukaemia, Marilyn has gained in confidence which has unexpectedly altered the dynamics of her marriage; she has become a leader rather than a follower.

I mean my life has felt fractured the for the last eight years. Not to the point where it’s gone completely, because I’ve managed to stitch it together, but it fractures in unexpected ways.

 

Such as?

 

It’s made me less compliant. Choose my words carefully. I think when you’re in a relationship, especially one that’s been as long as ours, you often have a leader and a follower, which, you know, you choose your own path. Now I’m coming up to the leader bit and that’s changed a lot of things. And I’m sure that’s to do with having to find your inner strength to fight your battles and you become much more of a rounded person and much more of a confident person. So in a way, having leukaemia has made me more confident but it’s changed the balance of our life. To me it’s changed it for the better and I think that that’s an unexpected thing to have happened. I wouldn’t have expected that to have happened when I was told. I just expected to be ending up lying in bed having to be looked after, and it’s gone a different way.

Marilyn's husband at first found it hard to accept her CLL* and she found it difficult to talk to him about her fears; however, since she has needed treatment he has been very supportive.

Can you tell me a bit about how your husband’s taken it all and how he’s helped you or not?

 

He took it quite badly to start with. He didn’t really know what to expect. When we first went to see my GP and he said, “Don’t worry. She can still do everything she wants to do. This is a very low key type of cancer. You don’t need treatment at the moment”, my husband grasped that with both hands with everything. I found that was quite hard to deal with because to me it was the biggest most awful thing that had happened, whereas my daughter and my husband listened to the GP and took that on board, and they kept saying to me, “It’s not life and death.” To me they were belittling it, so that was quite hard. To them they were dealing with it as they could. That was the only way they could deal with it. So I was down there, they were sort of there.

 

We found it quite hard to talk between us, my husband and I, at first because I would get very upset and he didn’t really want to hear that. As the years have gone by he has been extremely supportive, giving me encouragement, coming with me to the hospital, coming in all the consultations I’ve had, all the various tests I’ve had he’s been there with me. He’s always been as positive as he possibly can. Having said that, in between he’s obviously been quite depressed about it so we’ve tried to help each other there. I had noticed that when I was very down, he was the positive one. When I came back up he would then go down, which I think is quite common. So luckily there’s been, both of us have been, one of us has been up while the other’s down. Over the last month I’d say we were both quite down, which is then quite hard because neither of us can cheer the other one up, but we’re getting over that now.

 

I’d say he’s been absolutely marvellous. I think with something like leukaemia, which isn’t a particularly physical thing, I think he’s dealt with better than he might have dealt with breast cancer or something that was a lot more physical and something that you could maybe see more. I couldn’t have wished really for a better response. And when you feel guilty about having something like this because of the pressure it puts on somebody else, when he was unhappy and sad I would feel that he was cross about it. And in retrospect I don’t think he was. I think he was cross because he couldn’t do anything about it.

 

So those are quite difficult things to get over. To actually try to say to each other, however long you’ve been together, we’ve been together for forty-one years, and there are still things that you can’t say. And that’s why I did seek help outside home and family, initially, with the counsellor that I met. And I was extremely lucky to meet her. So I could do all my outpourings there, so I was a little bit more careful what I said here, which sometimes isn’t a good idea because I think sometimes you need to just say whatever is on your mind. But if you’re aware that the other person isn’t really up for hearing it, you just hold it in and that doesn’t particularly help. But it makes you feel better that you haven’t burdened the other person, so it’s a bit of give and take and… I know that he desperately wants me to be well and that’s all that matters. And I desperately want to be well for him and me.

Marilyn has recently finished her second course of treatment for CLL* and is happy that her energy levels have now risen after a slow recovery.

So nowadays do your energy levels fluctuate? I mean on a good day can you do everything you want to do or do you pace yourself?

 

Yes. Being that I’ve just had the four treatments, my energy levels have risen extremely well in the last three weeks I should think. Not as well as I was expecting but I think I was expecting to be leaping around like a two year old, which I’m not, so, you know, you have to suddenly think to yourself, “Well, no, in normal sort of circumstances you wouldn’t be leaping around.” Having said that, I’ve been down the park today with my grandson and I’ve been climbing the apparatus with him and that made me feel really good. I suddenly realised that this is what I want to be doing and that if I felt tired later I could come back and rest. So I think you have to get it into perspective of my age anyway, the fact that the leukaemia can wear you out and the chemo can wear you out.

Marilyn often feels tired because of her CLL*, which affects how she looks; she makes an effort to have her hair done regularly and avoids hanging around in her dressing gown.

Has having this illness affected the way you feel about your femininity at all?

 

Don’t know. I don’t think the leukaemia has. The menopause has but I don’t think the leukaemia has. I think it, well, I suppose it has because sometimes you feel so tired and I look grey and bags under the eyes and your hair’s not in good condition. So I suppose in that sense it has. So I try and, I have tried in the past to make sure that I don’t sort of hang around in my dressing gown and stuff like that, so I’ve made a concerted effort to get over those feelings. But in a way I suppose it has, yeah. It makes you look at your appearance more because, you know, feeling tired and stuff like that. I mean you look in your mirror and you think, “Good heavens.” And sometimes you’ve got no colour and you look sallow. So I’ve kept, things like having my hair done regularly, I’ve managed to do that. And luckily I’m so lucky I didn’t lose any of my hair in either of the treatments so that’s a big plus I think.

Marilyn talked to a counsellor at a cancer support centre and later privately; she said it helped her to accept and then to live with her leukaemia.

So initially that was so good to be able to go in there and just cry if I wanted to, get cross if I wanted to, get upset, and just know that I wasn’t leaving anything in the corner for her. We did a lot of cognitive therapy I think you call it, where you’re working towards things, and a lot of visual therapy and a lot of physically unloading. And I wrote about it constantly. I’ve got a book upstairs where I’ve got all my thoughts and feelings and there’s a lot of drawings in there and we did a lot of visualisation of how I actually felt. I felt very sort of bowed down and sort of loaded up with excess baggage, and we talked a lot about that and how you could change the image of yourself and maybe look at it in a different way.

 

That went on for about six sessions. She seemed to think we were making good headway so I met her at another clinic as well and we did a few more sessions there. And I just found it so good. I got all the strands of my life together, almost as if everything I’d been working for, all the problems I’d had, were all coming to this one particular moment being told that you’d got something like leukaemia. And having someone who wasn’t, it wasn’t sympathy, it was empathy. Somebody who couldn’t give me medical advice. They couldn’t put it right, there was nothing I couldn’t say, which was absolutely wonderful. So I think if anyone worries about seeing counsellors or thinking that it’s not for them, I’d definitely say, “Give it a go”, because you don’t know what’s in you until someone gives you that space to talk. And that’s what it is basically, there’s no real questions, there’s nothing set up. You go in the room, you talk if you want to, you don’t if you don’t. And that is such a, you know, much like being given, oh I don’t know what it’s like being given really, it’s like being given the moon when you’re a little child and you want to reach up for it and someone says, “Here it is.” And you think, and then all this outpouring can come out.

 

And it helped me through, she helped me through the work problem that I had with quite a few unsympathetic people. That was quite a difficult time and she helped me through that. She helped me look at myself in a different way. We dragged quite a few things up about when I was a child, about what sort of child I was. And that helped as well because your past, although people say you shouldn’t look back at your past because of what’s done is done, you are your past. Everything that’s happened to you in the past is what you are now at this moment in time. And my husband said he could never do that. He wouldn’t want to do that, whereas I found it really cathartic. It was what I needed. And after the NHS sessions stopped I carried on visiting her at her home until I felt comfortable enough to sort things out myself.

Marilyn had expected to be rushed into hospital for immediate treatment until the doctor explained that her CLL* was not life-threatening.

It was in the June that I went to the local hospital, saw a consultant. It was a very laid back interview. Nothing what I expected. I think I expected to have to be rushed into hospital and have treatment straight away. It wasn’t like that at all. He explained about the leukaemia I had was chronic lymphatic cancer, lymphatic I think. It wasn’t acute. It wasn’t dangerous. It was something that would progress but it wouldn’t necessarily kill me, it would be side effects of it.

 

So that was something to take in. I think at these stages you don’t take everything in at once. You can’t remember what people said. You come back from these consultations wondering if you’ve heard everything. Basically, it’s, as I say, a chronic condition which would never go away. Once you’ve got it you’ve got it but they can treat it and you can go into various remissions and I’m in one at the moment.

Marilyn was angry at having to give up work because of her CLL*. She felt guilty about not earning on days when she felt well but could not predict when these would be or when her remission might end.

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.

 

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 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. I hummed and hahhed about going out and doing a few days here, a few days there, 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, 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. I think I’d find it very hard mentally to adjust and I think I’d make myself ill again, and that’s quite hard to take on board as well, because I feel that I’ve got things, I can use a keyboard, I can type, I can do office work, I can do loads of different skills, but my work confidence isn’t very high. As I see myself now I’m confident, but to go back to work I don’t think I could.

 

So that’s a definite down side because I see quite a few little part-time jobs that I think I could do. But the trouble is nobody can tell when the illness is going to come back with a vengeance and when it isn’t. And you’ve got to be reliable so I think that equation is out of the question really now. So the onus is a bit on my husband, which is quite hard.

Marilyn gave up work because of her chronic lymphocytic leukaemia and lived on Incapacity Benefit until she reached age 60 when her pension took over.

So before you had your treatment?

 

Yes, before I had treatment. Yes, there was no real problems with finance. Obviously, going from full-time work to part-time work there was quite a drop. But we just adapted and we’re not huge spenders, we don’t go abroad particularly, we’re very sort of home-lovers really. Go on holidays and things like that, so we still managed to maintain the lifestyle that we were happy with, so that was all right.

 

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 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 I was 60 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.

Marilyn explains why it was decided that she needed treatment after 5 years of watch and wait and that although she was anxious about it she felt ready for treatment.

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.

Marilyn had to take a cocktail of tablets alongside her chemotherapy pills; it was so complicated that her husband listed her daily medications on a wall chart to make sure all were taken.

Good. Okay, tell me about this latest chemo, the fludarabine and clyclophosphamide. 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 antiviral tablets to take. There were sickness tablets to take. And there were also, I can’t remember what they’re for, another sort of 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 antiviral, 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 antidepressants and various things that I take. And then the rest of the week you just took the antivirals 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 the morning you have to take it twelve hours in the evening ready to combat anything, any breakthrough sickness.