Julie - Interview 66

Age at interview: 38

Age at diagnosis: 27

Brief Outline: Julie was diagnosed with acute myeloid leukaemia after experiencing weight loss and bruising. She had four courses of chemotherapy then high dose therapy and whole body irradiation followed by an autologous bone marrow transplant. She is in remission.

Background: Julie is a clerical worker in the NHS. She is married with no children. Ethnic Background: White British.

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Julie was training to run the London marathon and was losing weight along with her appetite. Her training was interrupted by a respiratory infection. She also noticed that simple injuries caused enormous bruises so she called a doctor out. The GP suggested a blood test and phoned a few days later to check that she had done this. She had a blood test done at her local hospital on a Saturday and within a couple of hours the GP phoned to say that she should return to the hospital. There she was told that she had acute myeloid leukaemia, which was an enormous shock given that she hadn’t felt very unwell.

 

She was given an infusion of platelets and blood immediately and kept in overnight. The next day she was transferred by ambulance to a London hospital for treatment. With the blue light flashing the 30 mile journey took only 25 minutes. Her sister went home and packed her things and delivered them to the hospital.

 

Julie had a line put in her groin for her chemotherapy to be delivered through and was started on a four week regimen of two different chemotherapy drugs three times a day. About ten days in she had her hair cut short in preparation for it falling out. She was surprised not to experience any sickness but did develop mouth ulcers and piles as a side effect of treatment, which caused a lot of pain. After a month in hospital she was allowed home for a few days, which coincided with her birthday. When she returned she was told she was in remission but that she would have three further courses of chemotherapy with a few days at home in between.

 

She continued to feel ill as a result of the treatment but had an operation to stop the piles, relieving her of the pain. After four courses of chemotherapy, to reduce the likelihood of relapse she was offered an autologous bone marrow transplant, which would be preceded by high dose chemotherapy and total body irradiation. It was explained that this would make her infertile and as Julie hoped to get married and have children in future she initially refused the procedure but was eventually persuaded to have it as the risks to her life were so high without it. She had the procedure and it took several weeks for her to feel better. After six months in hospital she was discharged.

 

During treatment Julie had been put on the contraceptive pill to stop her periods and after treatment ended she experience hot flushes. Her specialists confirmed that the treatment had caused an early menopause and prescribed HRT. Although she had some ovarian tissue frozen before her high dose therapy, Julie has decided not to attempt to use it because of the complications and uncertainties involved.

 

 

Julie didn't want to lose her fertility. She had an ovarian slice frozen before her leukaemia treatment but hasn't risked reimplanting it because of possible complications in her carrying a pregnancy.

And they said, ‘Because of the extent of the treatment, very, very strong treatment, the likelihood of me being able to have children later on in life is practically zero’. And my mum just looked at me, because she was at the end of my bed, and she says, ‘You won’t have it done will you?’ And I said, ‘No.’ So the doctor said, ‘Well we won’t talk about it anymore. I’ll leave you and you need to think about it.’ Okay. Fine. 

 

And my dad came in from his normal, he worked in the mornings at work and he came up to London in the, every afternoon. And he said to me, ‘What do you mean you’re not going to have it done? Of course you’ve got to have it done.’ I said, ‘No. I want a normal, when I get out of here I want a normal life.’ I think, you know, people agree with me, normality was everything to me. ‘I want to go back to my job. I want to go home. I want to carry on with my partner. I want to grow older. I want to get married. I want children, you know,’ I had nieces and nephews at that time. ‘And to have them would be everything to me. So that they’re not doing it, no.’ I said, ‘You know, I’ll run that risk. I’ll just have the chemotherapy now. I’ll go home and we’ll just be monitored closely and then basically pray to God it never comes back. I’ll get married later on in life and I’ll have children.’

 

So anyway, unbeknown to me, my parents were having private meetings with my consultants and my professor. And they really kept on saying to my parents, ‘You’ve got to talk her into having it done. She won’t live without it. She had it so bad that she really needs to have it done.’ And my partner used to stay with me Monday to Friday and then he would go home for chill time and my parents would stay with me over the weekend. And I never, you know, I remember this conversation and my parents were in the room with me, and I’d never seen my dad cry, and he just burst into tears. And I just said to him, you know, ‘What’s wrong?’ And he just said to me, ‘If there’s, with every ounce of me I beg you. Please, please, please, please, please have this transplant. You know, if your mother.’ You know, my mum and dad have been married now forty-six years and, you know, ‘I would have married her even if she couldn’t have had children, you know, I loved her, and someone will marry you whether you can have children or not. So please, please, please, please, please have this transplant. You will die without it.’ And I was like, ‘Okay. Fine. Yeah. I’ll do it.’ And they were like, ‘Quick, go and get the consent form now. Quick, go and get it before she changes her mind.’ 

 

I did go in for an ovarian slice. I did before they started the treatment, I did have part of my ovaries frozen. They are still at the hospital, I think, to this day. But again, technology at that time wasn’t that they could defrost them and do all of that back then. I know they can do it now, but I’ve just felt that my age, I’m obviously eleven years older. You know, eleven years and the treatment and the drugs that they’d have to give me, they’re not a hundred per cent sure that I would even be able to carry a child. And also the fact that I now take the HRT. I have done for the last eleven years. So with all of the complications involved and the drugs that they’d have to give me and everything that we felt, we didn’t go down that road. 

Julie's leukaemia treatment left her infertile. She loves her nieces and nephews as if they were her own, but seeing them also breaks her heart; she would give anything to be able to have a child.

So you were asking me about obviously what it’s like being infertile. As I say, friends, pregnant, children, and you’d go to see them and they’re holding a baby and you think, ‘God I’d give an arm, I know, an arm to have that.’ And even more so when your family, my brother, my sister had two children when I was ill, but then my brother met his, now, wife and he had children. And I remember going to the hospital and just opening the door and seeing him with children, and it breaks your heart. I would be a liar if it didn’t. And it still does even today, I’ve got nieces and nephews now that are older, a lot older, my niece is sixteen and, you know, she’s beautiful, and my nephew is he’s just a, they’re just a joy, my nieces and my nephews they’re beautiful. And I love them like they’re my own children. I’d do anything for them. I’d give them, you know, if they say to me, ‘Can I have that?’ I go, ‘Yeah okay.’ And I shouldn’t but I do. 

 

Last year it was my sixteen-year-old niece, it was her prom and we went up to London to get her dress. Oh she looked beautiful. And I’m told she looks a lot like me when I was that age. And I wasn’t here, we were on holiday at the time, and I came home and they showed me the video of it, and she walked out and I just burst into tears. My sister was crying. And again we’ve got such a good relationship now she rings me up and we talk on the phone and in all honesty it kills me. But if it meant that I’m alive then it’s the only price to pay. I had to have the transplant otherwise I would have died.

 

So therefore children just weren’t an option but I would have given, I’d give an arm, an absolute arm to have my own child. And certainly, you know, most people say I’ve got the best husband in the world. He’s turned my life around and, you know, to have his child would be everything to me. But it’s not possible, but we have one another, and all I have to, all I do is I have days when I cry, today being one of them, and all I do is I sit there and I’m thankful for what I have got. And a good family. I’ve got good friends. And the fact that I haven’t got children, I’ve got most, I’ve got more than most people have got, and I’m just thankful for what I have got. And I’m not greedy. I’ll leave it at that, you know, I’m not greedy, I won’t be greedy, I’ve got what I’ve got, and what I’ve survived, I think, you know, ‘I’ll stick with that and don’t be greedy.’ So that’s what I do. Stick with that.

Julie was nervous about telling her new partner that she'd had leukaemia treatment which had made her infertile; she told him early in the relationship and he said it didn't matter.

So how do you feel now about the infertility?

 

That hasn’t been easy because I was, as I said to you, I was with a partner. That was in ’97. We didn’t stay together. It was tough all round because when you come out of the hospital it’s a whole new world for you. And obviously emotions are running high and the nurses always used to say to me, you know, ‘If you’re, if you last through this you’ll last through anything’. And we didn’t last, which was unfortunate but, hey, one of those things. 

 

And I then met a, my now husband, in 2000 and I thought to myself, ‘Oh God. I really like this guy and how do I tell him that I can’t have his children?’ So it wasn’t that far into our relationship that I said to him, ‘I’ve got something to tell you’. And he went, ‘Oh God. I knew it, you’re married’. I went, ‘No, no, no, no. I’m not married’. ‘The little girl at your house the other, your parents’ house the other day, she’s yours?’ I said, ‘No, no, no’. I’m, ‘Yeah. God I’d love her to be mine’. No, she was my niece then, she still is, and I said, ‘I can’t have children’, I said, ‘Three years ago I was diagnosed with leukaemia and because of my treatment I can’t have children’. And he said to me, ‘Is that it?’ I said, ‘Kind of a big it, don’t you think?’ And he went, ‘No, no’. He said, ‘We’ve found one another. It’s taken me a lifetime to find you. I’ve found you’. He said, ‘No we’ll have a good life’. He said, ‘Doesn’t matter that you can’t have children, and we’ll never speak about it again’. And God love him he never has.

After surviving acute leukaemia Julie found that working locally was a big adjustment from her busy job in London, but she now enjoys the flexibility and ease of her working day.

And I tried and, what with the travelling and my work and then coming home again at the end of the day, by the end of the week I was beat. They were good in the sense that they let me do ten till four so I missed either rush hour on the train there and back. But it got to a few months and then they wanted that to stop, so it did. And I tried, I really did try. And I tried for a good couple of years, I’d say about three or four years, and by this time I’ve met my husband and we were living together and I was getting ill again. Not in the leukaemia sense, but ill as in tiredness would bring on coughs, colds etc etc. So my husband then said to me, ‘So why don’t you stop working and you work maybe locally’. I had never done that in my life. I got out of school, I wanted, I went straight to London, I wanted to work. I liked my life. I liked the going out, the partying, everything. I liked that, and work from home? And work at home, and I was like, ‘I’ve never done that.’ But he said, ‘Well, you know, give it a shot and if you don’t like it then you can go back to London’. So it took nine months for him when he first mentioned it, to the time that I actually said, you know, ‘Okay. We’ll give it a shot.’ 

 

And it’s now been nearly six years since I’ve worked in London but I quit. Again, an emotional time because I’d been, I was, you know, in my thirties then and I’d been in London since I was sixteen, and it’s the only job that I’d ever known, the only thing I knew how to do. And I think, ‘I’m leaving London. This is another part of my life closing down’. And I got a job locally and we tried, and salary difference was amazing. But I was well. It wasn’t the travelling, the stress of, you know, my work or anything like that, because obviously I’m working locally, I’m not travelling to London. Can’t say that I didn’t, for the first, say, six months I really missed it, but then I kind of liked being at home by about what? Quarter to four in the afternoon. That was amazing.