Interview 27

Age at interview: 40

Age at diagnosis: 34

Brief Outline: While pregnant she discovered swellings on her neck, which were not investigated. Following delivery an ear ache led to a diagnosis of Hodgkin's lymphoma in 2000, which was treated with chemotherapy.

Background: Teacher, married with two children aged 9 and 6. Ethnic background: White British.

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When 7-8 weeks pregnant she discovered a swelling on her neck. Her GP prescribed antibiotics. The swelling had not completely gone in a month so she returned and had a blood test, with negative results. Two months later she developed another large swelling on her neck and returned to the GP, who gave her more penicillin. 

A month later she experienced breathing difficulties but after examining her the GP assured her there was nothing wrong. A week later she developed terrible back pain, was given Pethidine at the maternity hospital and sent home but was readmitted later with a severely painful and swollen leg due to a deep vein thrombosis (DVT). She spent one week in hospital and had to take an anti-coagulant drug for the rest of her pregnancy. Despite increasing tiredness she returned to work until her baby was delivered.

At a routine post-natal check she mentioned that she had ear ache. The midwife arranged for a doctor to visit who gave her a letter to take to her next consultation about her anti-coagulant treatment. A biopsy was done, which showed that she had Hodgkin's disease. Further tests revealed that it had spread to her lungs and liver. She started having night sweats.

She was given 12 cycles of ABVD chemotherapy for which she had to stop breastfeeding her ten-week-old baby. She had to take medication to boost her blood cells before some of her treatments and was hospitalised on four occasions because she had become neutropenic and had to have intravenous antibiotics. After treatment she experienced repeated swelling of the glands in her neck so finally had a tonsillectomy and has been fine since. 

Throughout her treatment she continued in her roles of housewife and mother but broke down emotionally once treatment was completed. She had counselling for 6 months.
 

Describes taking diazepam and feeling relaxed and sleepy during her PET scan.

Oh right. I had to go up to a London hospital for my PET scan and I, they gave me this huge tub of Valium and I took several of those and stayed in this very boring room and just had a really nice relaxed time. And then I had to go and lay on this bed, and because you're on Valium you're just so completely relaxed you don't move. And it was like an all-over body, it's the heat, and I just laid there. And I can't really remember a lot about it because I think I was so on Valium, just completely knocked out by that. I can remember being conscious but not really aware of what was going on. And I didn't realise that when I went that I couldn't, I wasn't allowed to go home unless I had someone with me, because they said that you could've gone under a train or, the way that. So I, they were very nice and they let me phone my sister and my sister came up, because she works in London, and she came and collected me and brought me home. But it was, you know, it was not an intrusive, you just lay there and completely fine, yes. It was bizarre, this huge pot of Valium.

Being asked to bring someone with her to the hospital made her realise that something must be seriously wrong.

It was about two weeks later and I was sat here one Wednesday and I had a phone call and it was my local hospital and said, 'Can you come in tomorrow and can you make sure you bring someone with you?' And I think that's when I thought, 'Mm that's not right'. I phoned my husband and he could get time off work and he said, 'Yeah I'll come.' I phoned my Mum and said, 'Can you come over and look after my eldest daughter?' And she said, 'Yeah.' And my husband came home from work that night and he said to me, 'Do you think you've got cancer or something?' And I didn't really know what to think. I'd had a phone call, maybe about a week before, from my aunt and she'd said to me then, 'What's all these lumps on your neck?' And I think, and I, again I hadn't really thought, and it was only probably that, coupled with them saying that I suddenly thought, 'What is this?' 

And then of course we went in for 11 o'clock, and you never go in to time to doctors' surgeries, do you, in hospitals? And there were these three nurses all stood there hands down by their sides looking at me as I walked in. And I thought, 'What on earth is this?' And I sat down, carrying my baby because I was breast feeding her, she was only then about six, eight weeks old, and my husband was with me. And he said, 'You've got Hodgkin's disease, you've got quite a serious illness, you've got Hodgkin's disease'. And I didn't have a clue and he said, 'It's a cancer'. And that was it, my husband just fell apart, and I sat there and he said, 'We've made an appointment for you to go up to a London hospital next week and they'll do tests.' And he didn't really know much, he was a haematologist but he didn't, he could only guess, because he said about the staging of it, and he explained that it would be staged, and it was all kind of a bit of a cloud. And we came out and he said, 'Oh you'll probably only be about Stage 1, I wouldn't have thought you'd be very much.' 
 

The fatigue crept up on her during chemotherapy treatment - towards the end felt she could sleep for a thousand years.

And all this time you kind of, the fatigue is creeping up on. You look back and you don't realise it at first, and then you look back and you realise how tired you're feeling. And I can remember that last month of going up to London on the train, it would take me ten minutes to walk down the platform. And anything indoors was such a big effort. 

It was very hard, the fatigue at the end was, that last, I think the first, I started in the May, the chemotherapy, and for those first two months really, the first six weeks it was fine, it was just the sort of the bad taste, nothing tasted very well. And I didn't really have any sickness, I didn't feel sick, I just felt odd, I felt weird. And I remember I used to come home and I'd go to bed and I used to kind of, you know, I'd want to curl up and hold my head. But I didn't feel ill, I just felt I could sleep for a thousand years, it was just pure, pure tiredness, pure tiredness. 
 

Got pregnant accidentally after finishing treatment, her doctor arranged a termination but she miscarried before it happened, and realised that she didn't want another child.

Did the ABVD have any impact on your fertility do you know?

No not at, because I had in the, I'd finished chemotherapy in the November, and in the March I got pregnant accidentally, I was on the mini pill. And as soon as I found out, I'd had a CAT scan late February, and I knew that the pregnancy would be severely affected, the child would be affected. And I went to the doctor, my doctor, and I was completely beside myself, completely, and he was brilliant and he said, 'No, I'll get that sorted.' And he gave me an appointment to go and I had a miscarriage three days later, which I was, you know, I was so glad it happened that way and I found, so' But that made me realise'

So you didn't have a termination as such?

No I didn't have to go through that, that was good. But I did find that then that made me also realise that I didn't want any more children, I had two children and I didn't want a third. And after what I'd gone through I didn't want any more children, it was enough just coping with myself. So no, it didn't affect my fertility although they said it could do, but it didn't, no I was lucky.
 

She wished her mother would cry on hearing the news but instead she pretended to be strong for her, probably because that's what she felt was needed.

And how did your parents deal with it? I know they were helpful in practical ways. How did they deal with it, do you think, on an emotional level, and your siblings?

My Dad passed away in 1999, he had a brain tumour. And so it was just my Mum, and her first words when I came back from hospital - she was the first person I told because she was here looking after my eldest daughter - and she said, 'You're going to beat this, you're going to fight it and you're going to beat it. If your father was here that's exactly what he'd say.' And that was her attitude. And what I really wanted her to do was to break down in tears and say, 'My baby is dying.' I wanted her, and my sister, and I said that to my sister about a year later, I said, and she said, 'Well she was saying that but she couldn't say it to you because she wanted to be strong for you, she didn't want to say that to you.' I just wish she had said it to me and I wish that she would've been, that she could have cried, I could have seen her cry about it, but she was just strong because that's what she felt that I needed. And I don't know, perhaps she was right, I don't know. I mean I think I was probably, I now think that I was probably too strong and I think I should have cried more myself. 

But my sister' just very practical my sister, never really talked about the emotional side but talked about the medical side and, you know, very on the ball, what should be happening and what should be done, and very like that. But that's my sister, I mean her attitude was you're going to beat it, and supportive in that way really.
 

Coped throughout her treatment because of her family responsibilities but cried at her 6 month check-up; counselling helped her to accept having had cancer.

I think I came to a point in my life where I didn't talk about really having had cancer. People asked me about different times in my life, I would say, 'I've been ill', and I didn't really talk about it. And I think there is a perception that the illness that I had, because I coped, because I continued to look after my family, my children, that it was something I just dealt with, and it had gone away and it was in the past. And I was going up to my hospital and the doctor that I'd seen all through my chemotherapy had gone to America, and during that time he'd had a child and he was a really lovely doctor. And then last Christmas, December 2006, 2005, I was there for my six month check and, no it would've been 2005, it would've been December 2004, that's right. 

And I was sitting there in the waiting room for my six months check and he came out, you know, lovely, no kind of, no formality, very good friend. I went in and just before, just a second before he'd come out there was one of the auxiliaries from the ward where I used to have to go and sit, and you didn't see her around the ward, and I just started crying because I saw her. And he came out and was, you know, and I came in and I just collapsed in there and I cried my eyes out. And he said to me, 'I thought this would happen, this is a common thing.' And I thought, 'I need to speak to someone, I need some help about this.' 

And when I had my first child I'd had postnatal depression and I had counselling for that and that was brilliant. So I knew of a foundation that did counselling locally to here, so I went to them and they agreed to see me, and I had counselling from the January until I decided that I didn't want to do it any more. And so I did it for about six months and it was fantastic. It was, I think I hadn't really ever accepted that I had cancer in that way, and I don't think I'd really ever admitted to myself how ill I was because that was too scary and too dangerous a place to go because I had a child, and because I felt that, 'I am the strong one'. 

You know, the day I found out, my husband was in bed with a bad headache and I was the person on the phone telling people. And I think to admit, to sit there and admit to myself that it was a terrible thing, a terrible, terrible thing, you know, it was what I needed to do. And now people say to me, I don't, it's a strange thing, you say to anyone, 'I've had cancer', and it's funny, I was at school last week, one of the mothers from my daughter's class and we both, and I said to her about, something about cancer and I said, 'When I had cancer'', and she looked completely shocked. And I don't want to glori-, I'm not glorifying it but it's a very common thing, and I should be able to say that, there's no shame in it, I'm not trying to glorify it but that was what happened and because of that it's the person I am now. It changed me as a person, it has changed me as a person definitely. And I think counselling made me accept those changes and continue to develop myself.