Interview 41

Age at interview: 41

Age at diagnosis: 11

Brief Outline:

Hodgkin's lymphoma diagnosed in 1976 after she developed a lump on her neck. Chemotherapy put her into remission. Afterwards she contracted shingles and needed skin grafts and hair transplants because of severe scabbing on her scalp.

Background:

Nurse, married with three children aged 16, 14, 10. Ethnic background: White British.

More about me...

She developed a lump on her neck which her doctor initially thought was due to an infection. She returned some weeks later and the doctor ran blood tests. 48 hours later the doctor rang to say they should go to the hospital the next day to see a specialist. At the hospital more tests were carried out and within two days she was diagnosed with Hodgkin's lymphoma. She was treated with chemotherapy over a three year period, which put her into remission. She suffered with sickness but did not lose her hair. Her energy levels were low and she needed periodic blood transfusions to counter anaemia. She missed a lot of school but was given lessons in the hospital instead.

Afterwards she developed chicken pox and shingles which affected the skin on the left side of her scalp and neck so badly that she lost most of her hair on that side and needed skin grafts and hair transplants, which made her very self-conscious for a time, although she had a wig. Although her fertility was at risk from the chemotherapies, she went on to have three children.

Because of her young age she had not been made aware of the seriousness of her illness and the possible implications for her fertility. Perhaps because of this she had a positive attitude throughout.
 

Was never told how potentially serious her illness was and the word 'cancer' was never mentioned....

You were very young when this all happened to you and you've explained that you didn't really know how ill you were or how serious it could possibly be. Did you know at the time that it was a kind of cancer or had they spared you that?

I think they'd spared me. I don't think the word 'cancer' was ever mentioned, no. I knew I had Hodgkin's but being a typical 11-, 12-, 13-year old you didn't look things up. You know, I never looked it up myself. It's like if my children ask for a word I say, 'Look it up in the dictionary'. They're very reluctant to get the dictionary out, they'd far rather I just told them. So I, no I don't think I ever, the word 'cancer' was ever mentioned. I knew I had Hodgkin's and I knew that I was quite ill but I didn't realise the severity of it. As I say, I don't think the word 'cancer' was ever mentioned. And if it was I think I would have been dismissive of it. And I would have, at that time, because I was quite positive in my sort of looking at life I think I would have just thought, 'Well I haven't got it badly anyway'. So I was very much of the opinion that I was fine and I didn't have a problem. 

Went on a school walking trip and managed all the walking, was very tired and hadn't realised how...

My energy levels I did find were quite affected. I remember I really wanted to go on a school trip to Wales. And we were doing mountain climbing and they were all very, 'Are you sure you're going to be up to this?' And I desperately wanted to be exactly like the other children, and I said, 'Yes'. And I remember after about three days of sort of walking and doing some, quite sort of severe hill climbs really feeling very tired and washed out, and the teachers saying, 'Do you think you're going to be able to finish doing this?' And I was adamant I was, and I did. I managed to stay and finish this course. But it was very tiring. I didn't realise quite how much my energy levels had been affected until I attempted to do this sort of holiday with the other children from school. But generally I think because, as I say, I was unaware of the severity of it I kind of felt that I could do anything. And I kept soldiering on and being equal to all the other children as much as I could in most aspects of my childhood.

Was treated when a teenager and never told that she might become infertile so was not anxious...

I know one thing that was an issue was because at that time the chemo, they weren't sure if I'd be able to have children. Apparently my mother had said to one of the doctors, 'Will she be able to have children?' And the doctor at that time said to her, 'At the moment we're concentrating on keeping her alive.' And obviously I never knew any of this. And mum said that was very hard because I never knew that there was a chance that I'd be sterile. So as I beat the cancer and stopped needing check-ups I always just assumed I'd have a family. So when I fell pregnant and told my mother I remember her bursting into tears and me just thinking she was over-reacting. It wasn't until she then told me that for years she'd been frightened to death that I wouldn't be able to have children. But I'd been totally unaware of this. And I wonder if this is probably why I did manage to fall pregnant reasonably easily. Again because I had no idea that there could be a problem, that I may be sterile. So I'm sure, as I say, the ignorance was actually very beneficial in my case, as a child and a teenager and a young woman not realising that this could be a problem. I would have probably been very tense and anxious when my, I'd met my husband and we were trying for a family, if I'd known this. Whereas I didn't realise so I was totally relaxed and just assumed it would happen and it did. And was very lucky to go on and have three beautiful children, so all of them lovely and healthy. So I was extremely lucky and I think that would have been very, very hard for me if I had had a problem then. But thank goodness I was lucky and didn't.

Chose a nursing career because she had been in and out of hospital in her teens, got to know the...

What made you choose nursing?

Oh I always knew, always knew I was going to be a nurse because I suppose I'd spent from eleven years up until sixteen in and out of hospital. I'd got to know all the nurses very well and they were all sort of, because a lot of the nurses of course at that time were training, they were only probably eighteen / nineteen and I was quite mature. So I always got on really well and I was like a younger sister to them or, I got to know them very well. So they were always friends when I went in and I enjoyed talking to them and watching them doing their job and seeing how they were with the patients, and it just, all the way through I always said I was going to do nursing. 

And in fact I used to do part-time work in an old people's home where I lived. At the weekends I used to go and work there. I started doing it just from school, sort of work experience type of thing, and then gradually when the work experience came to an end they asked me if I'd like to go in there and just - I was only making like cups of tea and beds and things like that at that time - but I carried on doing that right up until I did my nurse training. So it was just automatic that, never any question what my career would be, I knew because I used to look at them and think, 'They've got good jobs. They all seem to enjoy it and they all seem very happy in what they were doing'. So it was just a natural progression for me that that was where I would go. 

I did find it very good actually in relation to my nursing because I remember treating several people on the ward that had come in and they had Hodgkin's. And I never told anybody in there that I'd had Hodgkin's. It was just a part of my history and I didn't talk about it. But I remember telling them. I was thinking, 'Well this is good because I can make them feel positive. Here I am, a young healthy woman who's at the brink of her career and working here', and I'd been there so I could really relate to them, which I found very good, and they used to ask me lots of questions, and I could really relate to it and talk to them, which was a good thing to be able to do. And probably therapeutic for me as well because, as I say, I didn't used to talk about it. I just kept it to myself and it was just something that had happened and I'd beaten it and I was fine. So it was very nice to be able to say, well actually, you know, I could pull a chair up and say, 'I have been there, I've had the chemo, here I am, lovely and healthy and I've beaten it'. And that was good, very good.

Wearing a wig in her teens made her withdrawn and she had no relationship until she was 18; her...

And when you're, as I say, you're at teens, 16 / 17 / 18 wearing a wig, that was very hard because obviously my pals were all very into make-up and going out and having boyfriends, and I was totally withdrawn and didn't want any relationship. I ran away from the opposite sex because I was so self-conscious. So I think it took me probably until I left college at 18 before I actually managed to come to terms with that. I did have quite a hard time between the age of 15 and 18 due to this and didn't lead a normal sort of teenage life at that time. Then I went on and I think probably doing my nursing at 18, that helped me to come to terms with it. And also my hair had started to grow through now, the transplant. So I could, I lost the wig. I didn't have to wear the wig anymore and therefore my confidence grew. 

So I didn't really have a boyfriend for the first time until I was 18 coming up 19. It's the first time I had a relationship with a man because I just had such a complex about myself, so that was quite hard for me.

How did that boyfriend react to it all?

Oh he was wonderful, yeah, from that point. My first love, I mean he was just great. He was a very good friend as well and I think he probably helped me over it, to overcome it. He was a really kind and understanding chap and he really helped me to come to terms with it as well. So that was, yeah he was a good friend as well as a boyfriend. So that was, yeah, very, very, great relationship to have had at that time actually. Helped me to take big steps forward, yeah.

Her parents had protected her by covering up how potentially serious her illness had been when...

Over the next sort of two to three years, I mean I've, as I said, my mother kept a diary just sort of recording every time I went for chemotherapy. It was really, to me just became a way of life. I think I just accepted it. I never realised at that time, because this was 30 years ago, that it was actually a very sort of high possibility that I was going to die. I never knew this and my parents were very good at saying, 'Oh, you're doing fine', only ever giving me the positives. So I never really realised the severity. Only now as an adult and having gone on and done nursing myself realising how absolutely terrifying it must have been for them. But they were extremely good at covering this up and pretending that everything was good, and only ever letting me hear the positives of it.

I mean that they dealt with it and I was never aware of it. I mean they're both very, very aware of the fact that they had to protect me from anything. So I was never aware of this. It was not until afterwards talking to them and they're both, I mean and they both recognise that now. And I mean they've just celebrated their golden wedding and so they got through that period but it must have been very hard for both of them, especially my father because he had to stop work for a while, a very proud man. He was able to do everything. And suddenly he wasn't allowed to because he'd had this problem. And his health wasn't great so he had to accept that he wasn't allowed to be strong for a while. And he had to take a back seat and not do too much himself. And I think that must have been very hard, but they did, they certainly, they dealt with it and pulled through it together and throughout the whole thing were wonderful parents. I never picked up on any of this. But it's only afterwards talking to them I realise how much pressure that had put on them. And they'd had to deal with it but it must have been extremely hard for them. And the fear, of course, because there was always that horrible thought at the back of their mind maybe I wouldn't make it. So that must have been quite a challenge for them.