Thelma - Interview 13

Age at interview: 65

Age at diagnosis: 63

Brief Outline: Thelma was diagnosed with acute myeloid leukaemia after having a blood test when dealing with an eye infection. Three courses of different chemotherapies have not yet achieved a remission. She is being monitored regularly and may be given more treatment.

Background: Thelma is a retired waitress. She is married with one adult child. Ethnic background: White British.

More about me...

Thelma had a blood test done in the course of investigating and treating an eye infection. She was called back for a repeat blood test and referred to a haematologist. She was initially told that the results were normal but later a bone marrow test showed that she had acute myeloid leukaemia and she was told she may have only a few months to live.

She was admitted to hospital and had chemotherapy twice a day for ten days, which she tolerated quite well but once at home after several weeks in hospital her skin peeled off from her limbs and back. She was told the treatment had not worked as well as was hoped and her prognosis was poor. However after a few weeks she began to feel better and another bone marrow test showed that the number of leukaemic cells had reduced considerably but not enough for her to be in remission.

 

She then became ill with chicken pox, shingles and pneumonia, requiring another hospital stay. She was then treated with Mylotarg as an outpatient and injected herself with cytarabine chemotherapy at home. She then took part in a clinical trial of a new drug from Japan that was injected into her arm every 2-3 weeks for 10-15 weeks, which gave her stiff arms which were relieved by steroids.

 

Three years on Thelma is still not in remission but attends the hospital regularly as an outpatient where her blood counts are monitored. She has developed bruises on her arms in recent months and expects to be given more treatment in the future. Thelma suffers from breathlessness (partly due to emphysema) and tires easily. She cannot do much around the house but her husband and sisters provide practical support.

Thelma's AML* has receded but not enough to be classed as remission; she has lost strength and has breathing difficulties. Realising that she could not return to waitressing work she retired.

So at what stage did you decide to give up work, because you were still working when you were diagnosed I think?

 

Well I had to, I couldn’t work any more. I couldn’t go to work, not even, because I was, they said, ‘If you want to come in for one day you can come.’ I just, I lift up trays. I just wouldn’t, I wouldn’t hold up to it. I wish I could have done. No, even when I was at my best and could walk, get out, walk and everything, I still couldn’t have gone back to that job, not holding the trays and everything, no. If I’d have been in remission I could have done. So I couldn’t go back. With the best will in the world. He said, ‘Would you like to come back for a day or two?’ I said, ‘I couldn’t do it.’ I said, ‘I just couldn’t do that. I couldn’t do it.’ So no, I wasn’t at that point where I could go back. If I was sitting behind a desk, anything like that, yeah, at the time, but then my breathing, my breathing got bad. When I had that pneumonia that’s when my breathing went, took a detour, you know, getting the pneumonia. That made the breathing a lot worse. It weakened the lung, because it wasn’t like that. But I can still, as I say, I can get about but I have to stop and start. Yeah.

 

So you’re not as physically strong as you were?

 

Oh no. No.

Thelma didn't feel that unwell from her AML* and found it hard to believe that she might have only a short time to live.

You always say to yourself, ‘I wonder what you’d do if someone told you you had so and so to live?’ You always talk about things like that, just say, when you hear of someone dying, you think, you say to your friend or yourself, ‘Oh I don’t know how I’d be if I was told I only had so and so to live.’ I can’t explain it. I know when I was first told and they let me have a little while to discuss what I was going to have done, I remember saying to my niece, ‘I can’t’, I said, ‘I don’t believe I’ve only got six months or a year, whatever’. I said, ‘I don’t feel like I’ve got it.’ So she says, ‘You’ve not. You’ve not.’ And I don’t know why, I just never accepted I’d got that long to live, or I don’t want to know, put it like that, I’d rather not know. I know they have to tell you but if you’d asked my opinion, ‘Do you think it’s better to tell them?’ In my opinion, no, but then you’ve got other people say, ‘Yes I’d like to know to put my things straight.’

 

We all know we’re going to die, as I said to someone, because someone said, ‘Well we’ve all got to die, Thelma.’ I said, ‘Yeah I know and I’ll accept that.’ I said, ‘And we’re all lucky that we’ve been on this earth as long as we have and gone through life with no illness.’ I said, ‘But we don’t want to know when we’re going to go.’ I said, ‘You could not wake up tomorrow but when you’re told you’re going to die, every time you look at the next day you think, is this my last day?’ But I said, ‘When you don’t know that you carry on going to work, doing things. You don’t even think about it. You think about your next year’s holiday.’ I said, ‘But when you’ve been told you’ll die you can’t seem to focus on next year’s holiday’. I know you should do but you can’t. And when my sisters say, ‘We’ll do so and so’, I do say, ‘Yeah we will’. And I think. They say, ‘And don’t say it, that you won’t be here.’ And I think, ‘Oh I hope I’m here for it’. And I think, ‘God willing’, but…

Thelma's hair fell out after chemotherapy and she lost skin from her legs, arms and back. She had been expecting side effects but had not known her skin might peel off.

So I went home. I came home and was referred to go up to the hospital every week. But when I came home that’s when I had the rough time. Well obviously all my hair fell out, my skin all peeled off on my legs, on my arms, on my back, but not on my stomach, not on my front, where my breasts are and my stomach. No skin peeled there, and nor my face or my neck. But all my legs, my arms, my back, the skin was coming off, just falling off, and all my hair. I had to be carried to the toilet, helped to be showered. Well there was nothing really much I could do for me, I couldn’t do anything. I had a wonderful family. I’ve got a wonderful family.

 

Yeah, in hospital I was fine. Lost my hair obviously but that was no problem. But when I came out that’s when I started, couldn’t do nothing. Everything, yeah, skin all falling off me.

 

Did they warn you that any of that would happen?

 

Well I did expect something, you know, I expected it. Didn’t expect the skin to fall off but I expected to feel lifeless. You know, they were giving me cream for it, to rub in, my sisters used to rub it all over my body. Then when it come off they used to cut my, underneath my feet off, well then it would fall off. And on my legs and that, my skin fell away. I don’t know whether, did I hear of people’s skin? I don’t think I heard of people’s… I know some people are bad on chemotherapy. Mind you I did have a strong dose. I did have a strong dose. I must have done for the effects.

Thelma takes a green tea capsule every day as well as a homeopathic remedy and vitamin C tablets; her consultant does not object to her using them except during chemotherapy.

What about kind of complementary therapies at all? Have you thought about any of those or used any?

 

Oh I use them.

 

Oh yeah? Tell me what you use.

 

Yeah I use green tea. One green tea tablet a day. And my niece works for a homeopathic lady and I’ve used that, it’s to help with after the chemo. They come from America, they’re called, I’ve got them outside, they buy them for me, they buy them, they’re for… And I use two of them a day. And vitamin C tablet. Yeah because why I use the rich tea one, not rich tea – hark at me! -- rich tea, green tea, 315 milligram, when I was in hospital my niece brought me in this bit of clipping in the paper saying about the green tea, about leukaemia. So she brought me the little box of them and in the tablet form to take one a day. And I asked about it and he’s turned round and he said, ‘I don’t personally..’ - this is this doctor who I was talking to - ‘Personally I don’t think it’ll make any difference’, he said, ‘But if you want to take it you take it.’ So I took that and the homeopathic one, the [name] from America that my sister’s got, vitamin C from word dot. And the only time the doctor doesn’t like me taking them, I showed my professor doctor who I see regularly. He said, ‘No, I’ve got no objections to you taking them. He said, ‘The only time I will have is when you’re on chemotherapy. The vitamin C tablet yes, but the other two stop while you’re on chemotherapy.’ So I’ve always taken them. Got them myself or my sister’s got them for me. So I took them from the word go so they can’t be doing me any harm can they?

 

Do you think they’re doing you any good?

 

Yeah. I do.

 

In what way?

 

I don’t know, I don’t. I just think they’re helping my body. I think they’re helping my body. They’ve got good results the American ones, very good on the internet, so my niece tells me. I don’t know. But they’ve got very good results and people have been going to her, she’s been, oh her father-in-law was a doctor. And some hospitals agree with it and some don’t do they? But no I feel, yeah, I take them regularly.

In addition to her leukaemia Thelma also has emphysema and gets breathless. She decided to quit smoking when she developed pneumonia after leukaemia treatment.

I gave up smoking. That I did do. I was a smoker but I was told leukaemia wasn’t smoke-related but I gave it up. I did give it up for my breathing as well. I thought, ‘Well what bit of life I’ve got I want a bit of quality.’ So if I’m with the chest and smoking as well, it’s going to take it down. Ain’t going to cure the leukaemia or anything like that but it still will help me in regards to breathing, so I'll give that up. Yeah.

 

Was that difficult? How did you manage it?

 

It’s hard. I still could light a cigarette up. I’ve got to be truthful. No good saying I couldn’t, I could. Yeah I could, yeah. But no I gave it, I gave it up.

 

Just with will power?

 

Yeah, it’s will power. Oh yeah it is. It takes a lot of will power, yeah.

 

Well done.

 

Yeah, it takes a lot of will power.

 

So you didn’t use patches or anything?

 

No no. I thought it was silly, you’re only putting a bit of nicotine in anyway. But what I thought, ‘No, I won’t. I’ll give it up.’

 

So did you give it up kind of overnight or was it a gradual thing?

 

The first year I gave it up and then I crept back and had a few here and there. Not a lot, I never bought any. But I’d say to my sister, ‘Let me have one of your cigarettes?’ ‘No, you mustn’t.’ ‘Come on, come on.’ ‘No.’ ‘Go on’. ‘No no, you know it’s not smoke-related what I’ve got.’ Then when I went in and had the pneumonia - because my breathing was pretty even keel then - but when I went in and had the pneumonia and come out with my breathing, then it frightened me. I thought, ‘No.’ So I haven’t smoked since. No I haven’t even asked for one or anything like that, no.

Despite being terminally ill and needing help with personal care, Thelma was refused Disability Living Allowance. Her sister appealed on her behalf.

Tell me about finances. Presumably I mean you had to give up work, how have you managed?

 

Well the thing that I got choked about, when I applied for disability I couldn’t, I was absolutely gone. Well in actual fact a woman who works for that kind of thing brought the forms round and helped me fill them in because I didn’t, so many pages and that and, God willing, I never claimed sick because I didn’t have to, I was lucky in my life. And it always baffled me. I should have said something but I didn’t. What did you do? And I put exactly, I said exactly, well she was there, the woman, and I couldn’t wash myself, I couldn’t bath, I couldn’t do anything. Couldn’t hardly get to the toilet -- my poor husband, and he’s thirteen years older than me, so I’m 66, he’s 79, but he’s been a tower of strength, thank God he was there - everything. So wrote the truth down for a bit of disability to help because I was getting taxis to the hospital, getting all taxis and that. My husband was getting taxis, we were getting taxis.

 

When the letter came back it was a refusal. ‘Sorry, we’re going on what your general practitioner said, no, you don’t come in for anything.’ So I said to my sister, ‘I’m not going to argue. What’s the point of arguing? I don’t want to argue over anything like this. I’m too ill to argue. I don’t care.’ So she, ‘No, no. What do you mean what the general practitioner has said? What has he said?’ And I thought, ‘Have they made a mistake then?’ Because the general practitioner to say, my general practitioner is the doctor, not the hospital doctor. So I said, ‘Leave it.’ So my sister said, ‘No, I’m not leaving it.’ When I told the lady who filled it in, she went, ‘What?’ My sister went up and see her. She went, ‘What? But she can’t walk, you’re bathing her, you’re doing everything for her.’ She said, ‘Well here’s the letter back.’ So my sister sent a letter back to say we come out and wash her and everything, but what we didn’t go to say, well what did the general practitioner say? The general practitioner hadn’t even been out to see me so how could he diagnose when he hadn’t come out to see me? My hospital doctor could have done. But she said, ‘The general practitioner.’ So I got refused and I was diagnosed as terminal. Well I am diagnosed as terminal.

 

Anyway when my sister wrote they sent 16, said, ‘Give you £16 a week.’ I said, ‘I don’t argue anyway.’ Then all of a sudden a letter came through to say, ‘We’ve reviewed your case and we’re going to give you £44 a week.’

 

Good.

 

But I thought I should have really, what I should have done really is gone up to that general practitioner, when I was well, well enough to say, ‘What did you diagnose on your thing? You hadn’t even been called out to me. I’ve never. When I did come to the doctors I got a taxi up to you. I didn’t call you out. I got a taxi. I phoned a minicab because I couldn’t get up that hill.’ I thought, I never, I didn’t, I thought, ‘No I don’t. I don’t want to argue over anything like that.’ But anyway I’ve got this £44 and I don’t know why they reviewed it or something and yeah but I never had any care come out to me because I had my family. They all did it for me. So that was that.