Interview 25

Age at interview: 70

Age at diagnosis: 69

Brief Outline:

Diagnosed with non-Hodgkin's lymphoma in 2005 after experiencing breathlessness. Fluid removed from around her heart followed by chemotherapy injected in her spine as well as intravenously. In remission.

Background:

Retired children's nanny, married with three adult children. Ethnic background: White English.

More about me...

She suddently developed breathlessness which caused her difficulty in walking and climbing stairs. One night while her husband was phoning for medical advice on her behalf she fainted, fell and banged her nose, causing two black eyes. She was taken by ambulance to A&E where they did some tests and diagnosed pneumonia. They drained two litres of fluid from around her heart and a biopsy of her thymus gland showed she had lymphoma. 

She was transferred to another hospital where she had methotrexate chemotherapy injected into her spine in between four doses of intravenous CHOP chemotherapy. After the third dose she contracted MRSA and was admitted to an isolation ward where she had intravenous antibiotics alongside her chemotherapy. After the fourth dose she contracted another infection. She was then given two doses of a chemotherapy called ICE, alternating with two doses of methotrexate, all administered through a Hickman line. During this treatment regime she needed two blood transfusions and also contracted shingles. She is now in remission.
 

Describes what it was like having chemotherapy injected into her spine, but only the thought of...

And then the place that I had my chemotherapy in it was, I was actually a day patient. So you go in for the day and you've got chairs around this room with sort of padded arms and you go in and you choose where you want to sit. And this little television there and the first thing that you have in, for my treatment was saline. And that's a big bag of saline with magnesium and potassium because when you're having chemotherapy obviously you've got a lot of drugs that your body is trying to process and it means the kidneys are working quite hard and it means that they're losing magnesium potassium so that's obviously what you need in your system. So they put a big bag of that in followed by a drug that makes your kidneys work faster. So they're processing, they're working really hard to try and flush that because cisplatin can actually be, tends to be, there's a greater risk of it being damaging to your kidneys basically and that's their concern. So you have that to make your kidneys work faster and then you have your bag of chemotherapy. Although before they put that in they put an anti sickness drug into you as well which just goes through the cannula so you don't have to be injected again. 

The cisplatin goes up and then you have another bag of saline to help the cisplatin flush through. And this time you're literally up and down. Your drip is basically on a wheelie thing so you can go to the loos and you're literally up and down to the loo. I mean every 20 minutes if you're anything like me because your kidneys are really really working and you've got all that fluid, extra fluid that's been put into your system so it's not surprising you keep going to the loo. And then I either had the option of having another bag of fluid or else I could drink a couple of litres of water. So I took that option instead so I just drank that. 
 

Describes what it was like having chemotherapy injected into her spine, but only the thought of...

And you had the chemotherapy in your spine at the same time as you were having the CHOP, is that right or did they alternate it?

I did at that stage yes. Yes, in fact I had the spinal one first one day and then the first chemo the second day. And then there was a gap of about a month or so in between giving me more spinal chemos after that. But I had six in all over a period of six, seven, eight months. But they did those in, well it depended, sometimes I was actually in having the other chemo in hospital and sometimes I went to out-patients and had it done.

What was it like having the chemotherapy injected into your spine, was that gruesome at all?

It's a bit nerve-racking I think, you just, all you do really is just lean over, bend over onto a table with a pillow on and they just freeze it and then you can actually feel the needle going in but it doesn't hurt, it's just a, just for a few minutes, and then they put some more anti-, inject it to freeze it again, and then it's just a sensation really and the pressure of pushing the needle into the spine. But it doesn't last very long, it's only ten minutes at the most, and you have to lie down for an hour on your back afterwards in case you get headaches, apparently that was the reason, just to lie quietly for an hour after the injection. And then just get up and go about as normal. 

It doesn't really give you any after-effects from it, it's just the thought of it I think really that's a bit frightening but you get used to it, after that many you get used to it each time really. It's just a ten minute thing really, it doesn't take long, it doesn't hurt, just the pressure of, and they're asking you all the time, 'Is it hurting you? Because we'll give you some more, freeze it a bit more' but, and talking to you, asking you if you're all right, you know, keeping you quite stable in that respect. But no it's not a big problem. I mean it's over and done within a few minutes. 

I think they have to be very careful they don't touch anything themselves, I think they're the ones that have got the, whether they've had any mishaps I don't know, but there is a certain place they had to put the needle in the right place otherwise they could've caused some trouble. But I was fortunate that those came out negative each time they did it so it hadn't reached my spine. 
 

Felt self-conscious about her baldness and was embarrassed and upset to have frightened a nurse...

And of course you go to the, somebody knocks at the front door and you forget you've got a bald head and you sort of don't want to frighten them. I was in my ward one day and because I was poorly I had to have the commode come to me so I wasn't capable of getting to the, even to the toilet that was in my own room. And of course I hadn't got a light on, the light was on in the corridor but I hadn't got the light on in my ward. And this poor nurse she opened the curtains to see if I was all right and I must've looked like a ghost because I had no hair and it was dark and this vision was just, I frightened her to death, absolutely frightened her to death. 'Oh', she said, 'I thought, I really did, I think', you know. But I was quite hurt really at the time, I thought, 'Oh gosh do I look that bad?' I saw the funny side of it the next day, and every time I saw her after that I said, 'Oh I promise not to frighten you next time'. But it was quite embarrassing to me at that stage because I thought, 'Oh gosh I really don't look like that do I?' 

I was very self-conscious about it at that particular stage and not feeling very well at the time of course it just hit me quite badly. And so every time I've gone anywhere now I've tried to put my hat on or make sure that people didn't see it. And now it's there I can actually see the little bit I don't feel quite so self conscious. But it's just one of those things you've got to accept is part of the problem, and again that will go away and get better, and as soon as things do start to look more like normal you feel better in yourself and quite cheerful and laugh about these things in the end. 

A wig from the NHS itched and she feared it might come off so she wore it only when she felt she...

Over the months I've felt very embarrassed about my hair, being bald, you know, as such. I have a wig, they gave, I get a wig on the national health and I've worn it at occasions where I felt I ought to wear it, you know, where people didn't know about my problem. But I did, I felt I didn't like wearing it really, it itched and I felt it kept coming up, going up, I was going to lose it. My daughter took, she's got an open-top car and she took me out one day and I put this wig on and we drove along the ring road and the wind was blowing and I just felt suddenly that my wig was going to blow off and land in somebody else's car, you know, so I had to keep, keep hold of it. So I put a scarf on on the return journey. 

And I've had to buy that many hats because last summer when the sun was very hot I had to protect my skin from sun. Not that I sat out all that often but, you know, wear a sun hat. So I bought dozens of sun hats so that I could go out with them and go back to hospital and everything with it. And then of course winter came and it got very cold and the bit that you feel most cold is your head, you know, they always say that if your head is warm your body is warm, don't they? Of course having no hair I was really quite cold so I've got umpteen little woolly hats as well now. But sometimes I put them on and think that I look like a builder's mate, you know, it's really quite embarrassing sometimes. 

She needed intravenous antibiotics at the same time as chemotherapy when she became infected with...

And then I suddenly became quite poorly at home. Each night and day I had to take my temperature to make sure it didn't go over the, up to the 38 limit, and this particular night it did. And they had told me to ring up as soon as possible that your temperature was high and that they'd decide whether I needed to go in, which I did. And when I got in there of course I'd got MRSA, so that was absolutely horrendous, it really was, and I was very, very poorly. I was on ten days of antibiotics on drip-wise, and I really was poorly, there was no doubt about it, I think they were worried, the family were worried and, you know, with the two together with having the chemo as well it just, it knocked me about quite a lot. 

Very tired, very out of it all really and in one sense I suppose, and but I just lay there, I coped with it I suppose. I just spoke to, because I had the MRSA of course I had to go into a side ward isolated away from everyone else, and after that, because I'd had MRSA I had to go in this ward every time I went in, which was great because it had its own television, it had a phone, it had a toilet and shower, so it was like being in a private home really, a private hospital. And then every time they needed me in I had to go in this ward. So overall I got over the MRSA eventually but, as I say, it was quite a nightmare at the time. 

Yes my bowel system really quite badly, you know, I was having to go to the toilet every five minutes, just gushed through me really. And sick, although I never was sick I was just, it just seemed to affect the oesophagus area and my nervous system here really, I think because it affects the oesophagus and if you get any problems just below the oesophagus is your nervous point I think, and that used to, really affected me that way. It made me feel sick but I didn't, I wasn't sick I just heaved and heaved and heaved, and I wasn't really bringing anything up but it was the motions were there. But I got to a stage that I wasn't sure how I was going to control myself, if you will, my bowel system, so I asked them to give me some padding to make sure that I didn't soil anything really because I wasn't quick enough sometimes to get out of, into the commode because I was so poorly. 

But that did, all the way through it seems to have been that part of my system that's been affected, so again I've accepted it as being the weakest part of my body, that that's why it affected me there. Now how other people are affected I really don't know, and how I got it I don't know, you know, it's obviously a germ that they're very, very, very, making sure that you're washing your hands all the time, and of course they do and then they give you this sort of stuff [alcohol-based hand cleaner], the extra, which of course I've always been very careful on that basis anyway. But of course when it's in your bowels it's a bit difficult, it's a sensitive situation that, you know, whether that's the way I caught it from that I don't know, I just don't know where it came from. 

And then I don't think the hospitals would tell you there's anything that they've done wrong anywhere. But I wouldn't say they did, I mean the precautions were made all the time, they came in to see me with gloves on and, washing their hands all the time in front of me, so I know it was nothing deliberate happened. Just a bit of a shock when they told me it was MRSA, and at that stage I really didn't take, you see it advertised on television' 'Oh so and so has got this', but you don't take it seriously as such really until it happens. But I can't blame anybody for it, in any way, any form really, it's just one of those things. I mean I did ask about it and they said that you've actually got it in your system all the time and you could bring it in from outside, or you, because of the immunity system it’s gone wrong it’s obviously come out of my system. But it’s quite a nasty thing and it did take ten days of antibiotics to get rid of, but again as I say, we came through it. And they did think that I was quite poorly at that stage and they did keep an eye on me, I must admit they were there at my bedside most of the time, they went through until the antibiotics kicked in. It’s not a nice thing to get but, as I say, you come out of it at the end of the day. Again it’s par for the course isn’t it, one of those things.

Has missed having holidays, has got behind with household tasks; feels guilty that she has seen...

I've always had a lot to do with children, all of my grandchildren I've been involved with a lot, but I've lost it in these last twelve months and I feel they haven't been able to come and see me as much because maybe colds or coughs or things, and I haven't been able to look after them as I have been, you know, they can't stay the night here because I couldn't cope with them, which I've missed and I feel it's a year out of their life as well as mine. We've always been quite close as a family and I've lost a lot, I just feel as if I've lost out on a lot of things in a way, and yet I've had a lot of other things happen. 

You just feel I like to do, I like to garden and I think, 'Well I missed it all last year, where has it all gone?' And you come back to thinking about jobs in your house and there are obviously yearly, monthly jobs that you do in the house, and I suddenly remember that, 'Oh I wasn't capable last year it must be in a dreadful state'. You know, that sort of thing. Just the fact that I think that I've lost a year of my life. 

And also my mother, well she was 100 this last month, she's always been in her own home, bungalow in [city] and I used to, my son, my husband and I used to go down every week and I'd do the housework and he'd do the garden and my sister would go down another day and do the shopping and deal with her pension and everything. And that was on a regular basis, and then she suddenly, I got this last year and of course I couldn't go, and for weeks and weeks I hadn't seen her, which to her as well as me was tragic really. Because again we're very close. And then sort of September time she got poorly and had to go into hospital and she wasn't treated well at all in this sort of so-called cottage hospital, and I was being treated like a queen, and I couldn't understand this and an elderly lady of 99, how, why weren't they? And of course I could only converse with my sister who was the one that was going to see her, I couldn't go and see her because of my own immunity I couldn't go into the hospital. So I went a few, a lot of weeks without seeing her. 

And then she came home and I was at a stage where my immunity system wasn't too bad so I managed to get down to see her at home. But she was, for the first time in my life I'd seen her in bed, she was, even at 99 she's always been a very fit person, and she looked very poorly. She was so overwhelmed at seeing me, that what did she say to me? She said, 'Oh it's my daughter, my daughter,' she said, 'My daughter has come to see me. I've known you since you were a baby', which was quite touching really at the time. And then she went back into another hospital and again she wasn't treated the same as she should have been as an elderly lady. But of course she was in a medical ward, which of course they're not going to keep her in because they needed the bed, but she wasn't capable of going home, she wanted 24-hour care, so between us we had to find a private nursing home for her, which she went in and she's in now, she's been in about five months now. 

And she really went quite downhill really, we thought, 'Have we done the right thing? But what can we do? We can't, there's no one can look after her at home so'' And this of course, this all projected back to me over the year, 'Why have I lost that year of my mother's centenary year? I should be there looking after her now', and I couldn't do this. Mentally this really has had a big thing on me. But she's settled now, she's beginning to realise, and when I was able to go down I went to see her in the hospital, in the nursing home once, not long after she'd gone in, and I've seen her a couple, two or three times since. 

We managed to get to the stage where her birthday was coming up and I was trying to communicate with my doctor and her to make sure that I was around and able to be fit enough to go down for her birthday. So we did that, I did actually get down on her birthday, and then on the following Saturday we managed to have a surprise birthday party for her at the home where the whole of the family were there, thirty-four of us turned up at the nursing home on the Saturday. So I feel that at least I managed to get to that stage and she managed to get to that stage as well. So I mean how much longer it will go on for with her I don’t know but fortunately now you can relax, I can relax because I know she’s being looked after all the time as opposed to us having to run down to see her if necessary. So at least that’s come to a settled part of my outlook on it all.

Her husband had to do household tasks that he'd never done before including clearing up after her.

But things have improved, I've managed to get on with, and watching my husband do the housework as well, watching he's missed that bit and that bit all the time. But he's been very good to me, he's had to do things that he's never done his life, I mean not nice things either. Sometimes when I've been very poorly he's had to clean up a lot of mess and he's coped with it. And I think he's been very confused and, more than me really, I think I've taken it positively and I've accepted it just because it's got to be done, you've got to do it, which I suppose when you've brought up a family you, that's the way, your attitude on life is like. Whereas your husband goes to work and doesn't see half the things that happen and he's had to do those sort of things. But with a bit of help and training he's not done too badly [laughs].