Interview 42

Age at interview: 47

Age at diagnosis: 42

Brief Outline: Non-Hodgkin's lymphoma was diagnosed in 2001 after persistent itching and a cough. The tumour responded poorly to treatment and it took several chemotherapies, a stem cell transplant and radiotherapy to achieve remission.

Background: Chemistry technician, married with two children aged 20 and 14. Ethnic background: White British.

More about me...

She developed severe itching that was debilitating, embarassing and prevented her from sleeping. She tried changing her washing powder, wearing only natural fabrics and installing a water softener but nothing helped. Eventually her husband persuaded her to see a doctor about it. Blood tests were done that showed she was anaemic. While waiting for the test results she developed a cough and one morning coughed up some sputum that contained blood, so she returned to the GP. She saw a locum who suggested a chest x-ray. The x-ray showed a mass in her chest cavity which her usual GP suspected could be caused by TB. She was referred to a chest consultant who suspected lung cancer and arranged for a CT scan and a bronchoscopy. The results took a long time to come through and she was eventually phoned by a consultant haematologist to say it was in fact a large cell anaplastic lymphoma.

She was given 6 CHOP chemotherapy treatments which only partially shrunk the tumour. She was given another chemotherapy regimen called DHAP which unfortunately had no effect so she was then given BEAM which shrunk the tumour a little. She then had to have daily injections to stimulate her bone marrow to produce more stem cells prior to having them harvested for a transplant. She was in hospital for about 3 weeks having high dose chemotherapy and the transplant. She was so ill that she couldn't eat and had to be fed parenterally. After the transplant scans showed that there was still some residual disease so she was given radiotherapy to her chest five days a week for five weeks. After this scans showed no sign of active disease and she has been well ever since.
 

She tried various things to relieve her persistent itching before being diagnosed.

Well it all started because I had some very severe itching. I'd always had very sensitive skin that very easily itched but I ended up having very, very uncomfortable itching. I described it as being any time, any place, anywhere, basically. And it was so bad that it was debilitating in one way and very embarrassing, and it stopped me from sleeping. I remember in October 2000 we went on holiday to Bronte country and I just couldn't sleep at all in this hotel. And I remember thinking, there must be something really wrong with me, or my skin or whatever. So I tried all the normal things of changing my washing powder and changing, having naturally made fabrics for my clothes and all the obvious things that I knew that the doctor would suggest if I went to see her. But basically it didn't make any difference.

Oh, we also had a very expensive water softener put in because I thought maybe it's because we've got such hard water. And again that didn't make the slightest bit of difference. It's nice to have soft water but it didn't stop me itching. 

So, in the end, after a lot of persuasion by my husband who was sick of sitting with somebody who constantly scratched 'Like a chimp' he said, I agreed that I would go to the doctor. And so I sort of told her all my symptoms and, true to form, she suggested about washing powders and things like that. So, anyway, I told her that I'd done all those things and that it didn't seem to make any difference. So she said, 'Well we'll have some blood tests because', she said, 'If you're very anaemic or whatever you can itch.' And various things. So, I agreed to have these blood tests.

In the meantime she gave me lots of things to put in the bath and creams to put on, some of which did a bit of good but it used to be so bad that I was desperate to have my bath by the end of the day. It was like the one bit of comfort that I had. So it became a sort of a ritual, which is why now I hate having baths because it has an association with them. I do have showers, I hasten to add. 

Tried to pretend to her family that all was well while she waited for her scan results, then...

So I went and had my scan and that was fine. I'm a bit claustrophobic so I was sort of wondering what it was going to be like but it was absolutely fine because it's open at both ends, so, that wasn't scary. So it was a matter of just going home. Of course it was a Friday so I had to wait over the weekend. I remember going out with the girls to some gardens and trying to sort of pretend it was all fine and we were having a lovely day. And that was really hard because always in the back of your mind you were thinking, 'I don't know what it is.' And obviously they were treating me very kindly at this clinic and I just thought, 'I bet they're looking at me thinking, 'She's so young, or relatively young, and not smoked and what a shame she's got lung cancer'.' Because that's what we were assuming. So I had to wait for the results. I don't remember quite how long it was but it seemed like forever. 

So I then went and had the bronchoscopy a week later, which was uneventful. And but then I had to wait a good while. I don't remember exactly how long but it was well over a week. I think it was up to about two weeks before I knew. So the first time I turned up to the hospital, our local hospital, for the results they couldn't find them, they didn't know anything about them. And so I'd waited for about two hours, waiting for this, you know, thunderbolt and it never happened. 

So I had to go back again, waited three hours this time, on my own, waiting for these results and again there were no results but they said that what they would do is really try and sort them out, and that they would ring me. And depending on what it was either the chest specialist would ring me or it, they said it could be lymphoma, in which case the consultant haematologist would ring me. So it was kind of a matter of seeing who rang me as to what it was.

Stayed in hospital overnight for her first dose of CHOP chemotherapy so her reaction to the drugs...

So following more sort of scans and things like that I started on a course of a chemotherapy which was called CHOP, and that consisted of, well the first treatment, it was 6 treatments, but the first treatment I had to go into hospital overnight to have that treatment because they weren't sure how I would respond to the treatment and I think my kidneys could have been at risk, and so they said that they would rather watch me, which was fine. I can remember that was July because Wimbledon was on. All the, I suppose the whole procedure had started in March. So an amount of time had sort of gone by. But I went in on a beautiful sunny day for my treatment and that just consisted of me having a needle put into my hand and then the treatment was administered fairly quickly. And it was absolutely fine. I remember walking around and talking to people in the ward and feeling fine really. So that was good. 

Worried about her infection risk when she had to share a bathroom with others when in hospital...

And certainly when I had my stem cell transplant, I was in a room by myself and obviously you're supposed to be in isolation because you're neutropenic, but the toilet and washing facilities were the communal ones. And so I was saying, 'Well, you know, might I pick up an infection?' And they, 'Well we'll give you a spray.' So I had this spray that I was supposed to clean the loo with before I used it. And it was very fortunate that I didn't get a serious infection because it was no thanks to anything anybody did. You know, people would come in and out in their everyday clothes to clean, and although they used a different mop, some of the other cloths they'd used elsewhere, and it was very hotchpotch. I have to say, now in this hospital they have got a specific unit where patients are treated, and I would hope that perhaps the facilities are better than they were when I was there. I don't know, because fortunately I've never been in it. But yeah, so it wasn't great, but you just, again, you can't walk out so you just have to get on with it really.

Were your kids allowed to come in and see you while you were in isolation?

I think they would have been but I didn't want them to. I just felt I didn't want them to see me so unwell. And certainly of my two children one of them would have found it very difficult anyway just because she's quite squeamish. And so we decided that they wouldn't come. And I spoke to them on the telephone and they sent sort of cards and things, but it was my decision that I didn't want them to come. My husband used to come and visit me. I didn't really have, there were a couple of people that came to visit me who worked in the hospital and they popped in, but other friends would ring the ward and ask, you know, did I want to see them? And actually most of the time I said no because I just felt so ill, and certainly didn't look very pretty. I just didn't have the energy to talk to them really. And also I didn't want to pick up any germs because I found that no matter what I said to friends, friends would come and would sit and say, 'Oh, I've got a bit of a sore throat so I'll just sit over here so that I don't infect you.' And I'd be thinking, 'Well actually I don't think you should have come to see me actually.' But it's very difficult. You can't say, 'Well. Go.' So yeah.

How often did your husband come in to see you during that time?

He came every day. Yeah. Every day. Just to sit there really, half the time. I didn't really have anything to say because I hadn't done anything. So sometimes I wasn't very sociable, most of the time probably. But he would just sort of tell me what had gone on and try and keep me in touch with things. Not that I really cared too much at that time.

Hmm.

I wasn't a terribly good patient I have to say, as a stem cell', with my transplant, just because I just felt so unwell really. So weak and that.
 

Felt isolated when having chemotherapy in a side room in a hospital ward as nurses and other...

And there were various things which, they weren't the kind of things that you would want to make an official complaint about, but I wasn't always treated, well I was misinformed in some things, and often when my drips ran out, I was on a pump, I would have to keep ringing my bell for them to come and to change them, and I was sometimes a bit frightened that there was going to be an air bubble and, you know, you don't know, do you? You get a bit sort of panicky about these things. So, and I was in the side room a lot of the time, which was very good in some ways but you were sort of a bit invisible. I mean there were times when, one day I went 6 hours and nobody came to say anything to me or see if I was all right and they just, and when I did get quite upset about having been left my husband complained and they said, 'Well why don't you ring the bell?' And, I said, 'But, I'm not that kind of a person, but it would just be nice if you came and said, 'How are you doing? Is there anything I can get you?? or'' 

What about the doctors? What were they like?

Again I didn't see them a lot. They would sort of march in and say, 'How are you?' Look at the chart at the bottom of the bed and walk out again. There was very little chat. I did notice the person in the room next door was a man, and my haematologist is a man, and they would chat a bit more. I don't know, I don't know whether it was just because they didn't know what to talk about or, he wasn't unpleasant at all but, yeah, they were OK. I, there was a co-ordinator as well when I had my stem cell, a transplant co-ordinator who actually was supposed to be the person that could give you the time to answer your specific questions that you didn't like to ask anybody else. I could never get hold of him, or rarely get hold of him, and I actually didn't find him helpful at all. And I only ever saw him once, twice, in the three and a half weeks I was in hospital. One was to give me a nebuliser thing, which is very unpleasant, and he had to get out of the room as quickly as possible apparently because it would affect him. And one more time and that's all I saw of him. And I never saw him afterwards. So, it wasn't great but. 

It was very hard for her husband who probably didn't share her optimism that she would survive;...

How do you think it affected your husband?

I think probably it was harder for him than anybody. I think it's always harder for partners, carers, because they're not in control. To a certain extent I was in control and I knew what was happening. Whether it was good or bad I, I knew, and I knew how I felt. Whereas even if I said to him I was fine he probably thought, 'Well she's probably just saying that to shield me'. So I think for him it was very hard and that there isn't any support, or we were never offered any support for him. We did have friends, have got friends who have gone through similar situations although not quite the same, and they sort of said, 'Well, if ever you want to talk, that's fine.' I think some people are people who want to talk and others aren't. And I think my husband keeps his thoughts to himself and I think he did find that very, very difficult. And much as I assured him that I knew I wouldn't die, again I'm not convinced that he believed me, but, initially anyway. And so for him it was, yeah it was really hard. He stood to lose his wife and the mother of his children so I think it was very difficult for him.

Did it interfere with his work, having to take on extra responsibilities at home? 

His boss was very good. He was very understanding. He was a husband and a father himself, and so if my husband had to suddenly come with me for a scan or drive me home from somewhere if I wasn't able to drive myself, then his boss would just say, 'Just go.' And my husband would make up the time. But that was excellent to have somebody who was very understanding. And his colleagues asked after me a lot and really cared and sent me flowers. So actually he was very fortunate that his boss at the time was understanding. Because sometimes you do just have to suddenly drop all and come. So it probably did interfere but not seriously, and they were very understanding about that.

Costs of her illness included buying products to treat her itching before diagnosis, prescription...

In that case, presumably there weren't any financial implications of your being ill?

No, no, no. No, I mean it does cost money actually all the medication that I had to have, a lot of it I had to pay for. Some of it I didn't depending on whether it was dispensed by the hospital doctors or my GP. And certainly prior to my diagnosis it cost me a fortune because I was paying for anti-histamine tablets because of the itching and products to put in the bath and the shower, which didn't do any good. But you just carry on in the hope that they might do. So' and parking charges for the carparks and petrol, certainly when I had my radiotherapy, fifty-four miles every day multiplied by twenty-five, was quite a lot. But we were in a financial position for it to not to make too much of an impact. So we were very fortunate. 

Did they not say you could perhaps claim some of that money back, through the hospital?

I was told that it, you would have to be means tested and we didn't even try because, to be honest, we knew that it wouldn't happen. 

Accepted her illness and was at peace: she felt she wouldn't die from it because God would look...

Do you want to tell me a bit about how your faith has helped you through your illness?

Yes. Well, basically I just accepted that I'd got this illness. People again said to me, certainly my Christian friends from church and around the place were saying, 'Well, do you ever think, why me?' And I can honestly say, no I've never thought, 'Why me?' Because my attitude was, 'Well, why not me?' And to be honest, assuming this is the only cancer I ever get, and I hope it is, it was actually one of the better ones to have because it was treatable. And as I said early on in the interview, that when I was told that I had a tumour I was upset but I just had this feeling inside which I can't describe other than to say, I just had an assurance that I wouldn't die of it. What I didn't know was how much treatment I would need. I knew the big picture was that I would get better, but I didn't know what the detail was, that how much chemotherapy or radiotherapy or whatever, I never really knew. 

And at the end when my haematologist wouldn't commit himself really to say that the tumour had gone, but when I went to see the consultant at the hospital where I'd had the radiotherapy, he was much more positive, and so I did take that as, well yes, it's gone. And of course I'm sort of four years down the line now so I'm quite confident about that. But I always had that confidence, and every time I had to have some treatment I always used to pray. And I had a lot of family and friends, because of my sort of connections, I would say there were probably thousands of people in this country and abroad praying for me, and I really felt that that supported me and helped me. 

And I was always a very nervous child and I hated any kind of visits to the doctor or, I never had to have any operations or anything although there was talk that I might have to have one on my eyes, and my parents said that they would never force me to have it because they knew I was so nervous. And I'm a very sort of modest person who, the thought of going to a doctor and having to be examined or anything was just awful. So, of course, to suddenly have to have all these treatments, lumbar punctures, bone marrow taken to make sure it hadn't spread, it was like everything, any procedure that you could think of, I had to have a Groshong line put in for my chemotherapy treatment. So there was just absolutely everything. But I can honestly say that every single time I had to go to the hospital for something I never felt frightened, never. I can remember lying in the ante-room to the operating theatre when I was going to have my biopsy and I just remember thinking, 'I'm going to have an operation.' And I just was totally fine about it. I didn't feel nervous. I probably would have preferred not to have been there but I never felt nervous, and I was never, never scared. 

I didn't like what was going on and I think, most of the time, it was my daughters, that was the, they drove me on to get better, but they were the ones that I felt most upset about. Leaving them, and how they thought, and whether they worried that I was going to die. We were always totally open with them and told them everything. I didn't necessarily tell them the side effects, the potential side effects of the drugs because I thought, 'Well that might not happen so they don't need to know.' But we were always completely honest and open with them and they would pray for me and I just really feel that my faith in God helped me. And that it wasn't my turn to die and therefore nothing would kill me. I'd have to go through these difficult things and, yes, I did get an chest infection, but you're not spared from suffering or pain but I knew that I wouldn't die. And I don't think a lot of people believed me. I think they thought I was in denial and that they felt a bit sorry for me. And I did tell my consultant at one stage, because he was saying, “Well, we have to tell you that there is a chance that you may not survive this stem cell transplant”, and I remember saying to him, “You don’t need to worry because I know I won’t die”. And he sort of gave me a look as if to say, “Well OK, that’s what you think.” But I was right.

Was given a booklet about the chemotherapy and, later, another about stem cell transplants, but...

I did seek out information. I was given, at the hospital I was given information, a booklet about chemotherapy, I think it was a Cancerbackup booklet, and I also was given one about stem cells, obviously, as that became appropriate, I wasn't given it straight away obviously. To be honest, most of the information that, I either had to ask them or read up or, well they were the sources of information. I don't honestly think that I was given as much information as maybe I would have liked, but there are so many things that go through your mind when you're being given the news, and whilst I always sort of braced myself and I used to go to the appointments by myself, and I'd have a notebook and write certain things, but after a while you began to get the impression that, well, 'I'd better not ask any more'. Not that I was treated unpleasantly at all but I did find that you only are given answers to your questions. So if you don't ask, you're not told, basically. And I think probably that's because some people don't want to know. I made it quite clear that I wanted to know everything, good, bad or indifferent. 

Did you come home and look on the Internet? Or did any of your family do that?

No. No. We didn't. I never looked on the Internet. No. To be fair, at the time we didn't have broadband so it was probably more laborious, but no, I didn't. I read the information that was given to me but I didn't look it up. I think sometimes, I don't know, I just felt, I didn't want to be informed about symptoms that I may never suffer. And so I kind of thought, 'I'll just find out as I go along.' So that was my approach. It's not everyone's approach but that was mine.