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.
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.
Describes taking diazepam and feeling relaxed and sleepy during her PET scan.
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Being asked to bring someone with her to the hospital made her realise that something must be...
Being asked to bring someone with her to the hospital made her realise that something must be...
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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...
The fatigue crept up on her during chemotherapy treatment - towards the end felt she could sleep...
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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...
Got pregnant accidentally after finishing treatment, her doctor arranged a termination but she...
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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...
She wished her mother would cry on hearing the news but instead she pretended to be strong for...
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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...
Coped throughout her treatment because of her family responsibilities but cried at her 6 month...
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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.