Julie - Interview 09

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.

More about me...

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 envies friends and relatives who have children. She loves all her nieces and nephews as if they were her own. She's grateful for what she has and tells herself not to be greedy.

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 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, if they say to me, ‘Can I have that?’ I go, ‘Yeah okay.’ And I shouldn’t but I do.

 

And my sister and my brother tell me I’m my worst enemy, but I’d give an arm for them to be mine, and we have looked into adoption. We looked into it. Didn’t feel it was for me, or for us, I should say. But my husband has been wonderful. He has never spoken about it again. He has never thrown it at me. But if I have, as much as I’ve said I’ve learned a lot and it was an amazing experience, an awful experience, that has been, the pain was nothing compared to being told that you can’t have children. God, and I would, I’d give an arm. If anybody could say to me.

 

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 most people say I’ve got the best husband in the world. He’s turned my life around and to have his child would be everything to me. But it’s not possible, but we have one another, and 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 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, I’m not greedy, I won’t be greedy, I’ve got what I’ve got, and I’ve survived. I think, ‘I’ll stick with that and don’t be greedy.’ So that’s what I do. Stick with that.

Julie was pressed to return to work so at first worked 10 till 4 to avoid rush-hour commuting, but after going full-time found it too tiring and stressful so took a less well paid job locally.

What happened about your job?

 

I had 14 months off of work and it was now time, they were kind of putting the squeeze on me, if you like, ‘When are you coming back? When am I coming?’ Because obviously now after having 14 months off I wasn’t any longer being paid. And even though I lived at my home with my parents you still have outgoings, car, life etc. So I thought another good thing to get back to, as I say, I wanted the normality, I will go back to my job. So I’ve mentioned to my doctors that I’m thinking of going back to work and they were like, ‘What do you do?’ And I said, ‘Oh I work in the back office to a major German company here in London.’ And they were like, ‘No no, you can’t go back to that. You can’t do the travelling.’ And I was like, ‘Yes sure, it’d be fine, it’d be fine, I’ll do it. I’ll do it. It’ll be fine.’ And they were like, ‘No we really don’t think you should.’ And I said, ‘Well can I at least try?’ And they said, ‘You can.’

 

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 10 till 4 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’re 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 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, 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, ‘Okay. We’ll give it a shot.’

 

And it’s now been nearly 6 years since I’ve worked in London but I quit. Again an emotional time because I was in my 30s then and I’d been in London since I was 16 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 the salary difference was amazing. But I was well. It wasn’t the travelling, the stress of 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 it being at home by about what? Quarter to four in the afternoon. That was amazing.

Julie was scared at the prospect of losing her hair; she didn't want an NHS wig so her mother and friend bought one for her; she gradually gained confidence in her changed appearance.

Dear me, it was, well having long hair, and I mean really, really long, to, I mean when they said I had acute myeloid leukaemia I didn’t cry. I didn’t cry, I was just more, ‘Wow.’ As soon as they said, ‘Your hair’s going to come out’, floods of tears. And my dad was like, ‘You’re kidding me. It’s going to grow back and you’re crying.’ And I was like, ‘Yeah, but I’m going to look different.’ And oh yeah, oh God, did you look different. Because one day you’ve obviously got hair and then you’ll look in the mirror the very next day and there’s nothing.

 

And certainly I think the last thing to go was my eyebrows and my eyelashes and I just remember looking in the mirror one day and thinking, ‘God I had more eyelashes than that and more eyebrows than that.’ And I remember going like that and they were in my hand, totally, and you just feel you just don’t want anybody to see you with a bald head. And, you know, you’re going through hats, scarves, wigs, and as I said, at that time the NHS ones were woeful. And I’m only a young girl so I wanted something a bit more stylish, if you like. So my mum and my friend went up to South Ken to look round at shops. And in fact one of the nurses on the ward looking after me said to me, ‘Whenever I go out’, and she lived in London, and she said, ‘When I go clubbing in London I never go out with my normal hair.’ And she said, ‘I always wear wigs.’ And she came in one day and I just couldn’t stop laughing because she had this long blond wig on one day, she came in the next day and she had this brown one on. And she said, ‘See what looks you can create.’ She said, ‘You can be anybody you want.’ She said, ‘You can be Jennifer Aniston one day and Angelina Jolie another day.’ And that put a smile on my face. Didn’t last long though because obviously the reality is that you’re not these people and you do look different and bodily you obviously look extremely thin. I think about that time I was barely seven stone and I’m quite tall, I’m five foot six. So it was awful, and obviously extremely pale with no hair and, you know, you’ve got a partner and you think to yourself, ‘God. I must look a fright.’ But when you did put the wig on and you did put, obviously, some make up on and clothes on and everything, you could look pretty normal, but for a woman I think it’s a very shattering experience.

 

You do get, like everything else, you do get used to it. You do look in the mirror and it’s part of the normal life. It took time, don’t get me wrong, it did take time and obviously at first if someone would walk into the hospital or my house I’d be, ‘Quick quick quick. Where’s a hat, where’s a scarf, where’s something?’ Dump it on your head. But after a while it got to, ‘Oh can’t be bothered’, you know, and they’d see you and first of all they would walk in and they’d be, ‘[gasp]’, you know, but then again you start talking and then they realise you’re still the same person and it’s still me.

 

And after a while you do get used to it but the very first I’d say few months is a very, very daunting, shattering experience because, not only are you dealing with a life-threatening disease, you’re looking in the mirror and you’re looking at a different person. And you’re also bodily, facially, everything, but as I say, I had long hair and my cousin cut it off and I’ve still got it to this day. Kept it.

Sex had been the furthest thing from Julie's mind during her AML* treatment; she was very weak, looked thin and pale and felt unattractive and embarrassed about how her body looked.

Given everything that you’ve said about how you felt about your body, I wondered if it had caused you any sexual difficulties during your illness. I guess there weren’t many opportunities for you and your partner?

 

No there wasn’t. It was because obviously my legs and they were putting things in my legs and I was so weak. Again, sexual opportunities they were very few and far between. And obviously you didn’t feel you wanted to because, again it’s the furthest thing from your mind. So that’s difficult, and also because your body is different in every way, because obviously being a woman you haven’t got a hair on you, you kind of feel embarrassed of the way you look and you don’t want people, anybody looking at you. So you find you cover yourself up a lot more. So again that didn’t help with the relationship.

 

But as much as you try not to, or he would say, ‘You still look the same to me.’ You know you didn’t. You know, I’ve dealt, I’ve a mirror. I’ve got eyes. I can see I don’t look the same. Like I say I was seven stone. I looked ill. You could see I was ill. I was so pale in comparison to a milk bottle. And I looked horrendous, I know I did. So you just feel so unattractive that obviously sex is the last thing you want to think about, the last thing on earth you want to be doing. And again it’s not the first thing on your mind, for sure. And then obviously taking your clothes off in front of people is again such a frightening experience because it’s the last thing you want to do.

 

And I remember one time they did let me come home with the little taps in my leg and you’re just frightened that the slightest movement or knock is going to obviously put the needle out or anything like that. So during that time it didn’t happen very often. And it was the furthest thing from my mind because, you know, it’s not the first thing you think about. And the way you look and you know that you look different, it’s the last thing you think about, to be honest with you. And you just, not even in front of your partner, even like my mum and that, you just didn’t want to get undressed in front of people because I was so thin, so scrawny and pale and horrible that, no you didn’t get dressed or undressed in front of people.

Julie, aged 27 and single, was devastated by the prospect of being made infertile by a stem cell transplant so initially refused it; she was eventually persuaded because of the risks to her life.

So it was about when, well I’d say about the end of April now, and the professor’s registrar came to see me. Lovely lady, very very sweet lady. Still see her now. And very very sweet lady and she started talking about the transplant, you know, ‘Harvest your cells. We really really pump you.’ I was having about 150 ml of chemotherapy every day. No radiotherapy at this time. ‘But we’re going to kick it up. We’re going to give you 1500 ml. We’re really going to fry you. On top of that you’re going to have radiotherapy a couple of times a day every day and it’s going to take about a three week stretch.’ And I just knew that there was a big ‘but’ attached to that. So I just said, ‘Lovely. Sounds great.’ And they said, ‘With this we’re about eighty per cent sure that the leukaemia will not return.’ I said, ‘But there’s a but and I know there’s a but attached to it, I can tell by your voice, so tell me.’ 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 any more. 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 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. When I get out of here I want a normal life.’ I think other 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,’ 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, ‘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 remember this conversation, and my parents were in the room with me, and I’ve never seen my dad cry, and he just burst into tears. And I just said to him, ‘What’s wrong?’ And he just said to me, ‘With every ounce of me I beg you. Please, please, please, please, please have this transplant. If your mother…’ - my mum and dad have been married now 46 years, - ‘and I would have married her even if she couldn’t have had children, 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.’

 

And they literally, they did it, they came with the consent form, I signed, and I think within about two days I was taken down to theatre and I had a Hickman line put in my chest.  

 

And then I then met 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 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, 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.

 

Julie was allowed home for her birthday after her first month in hospital but was anxious about being away from hospital in case of problems. She enjoyed her birthday and didn't want to go back.

And eventually after I think the first month I started to feel, you know, well I’d been in hospital straight for a month, I hadn’t been home at all. And they said to me, you know, ‘Your blood is picking up. What we want to happen is happening and you will very soon start to feel better.’ You see I’d met various people on the ward, nurses etc., and after a month or five weeks of being there they said to me, it was coming up to my birthday, so they said, you know, ‘We’re big on birthdays. We’re going to let you go home for a few days.’ And I was like, ‘Oh thank God. My own bed.’ ‘And when you come back we’ll then test you again to see whether what we want to happen is happening.’ And I was like, ‘Okay so you’re going to let me go home.’ And one part of me was really glad, ‘They’re going to let me go home.’ But then I thought, ‘What happens if something goes wrong? I’m an hour, good hour, hour and half away from London by car. What happens if it goes wrong? What happens if this happens? What happens if that happens?

 

And they were like, ‘Don’t worry. Just go straight to your local hospital if you want to or you can come straight back to us.’ And then I thought to myself, well I had this really lovely room and I was like, ‘Will I come back to this room?’ And they were like, ‘Maybe not. It depends if we get someone in who needs it.’ And I was like, ‘So do I want to go home or do I want to stay here?’ And they were like, ‘No no no no. Go home. Have a nice birthday, you know, come back to us. It’s only a couple of days.’ I think they let me home I think for about two days.

 

And I had a birthday and that was lovely, people came to see me. And by that time all in that first month my mum and my friend had gone up to, because I didn’t want an NHS wig because they’re, I know now they’re marvellous, but at that particular time they were horrendous and I didn’t want one. So my friend went with my mum up to South Ken because of us being in London, up to South Kensington, and she got me, she went into a very nice shop and she got me a really lovely wig for my birthday. I put it on and put make-up on for the first time in God knows how long, and people came to see me and it was a good, it was a good birthday. It was good to be home, good to sleep in my own bed, eat proper food as opposed to hospital food.

 

And we went back after three days and after being at home I didn’t want to go back. I was mixed emotions again but I did go back and I was given my room. I was more than happy, I was back in my room.

Julie was surprised how little time it took to have her stem cells given back; she thought the preservative smelled like sweet corn.

It took sixteen hours for them to take it out but it took two minutes for them to give it back to me, because it was this tiny, tiny, tiny, dinky bag, and within one injection or two injections, bosh, it was back in me and I was like, ‘Is that it?.’ You know, I suffered hours and hours and hours of agony and it was over with inside two minutes. And it was like, ‘It can’t be, it needs, surely there was going to be a lot longer than that.’ But no, within two minutes it was all back and it was all over with. But the smell in the room, can’t stand now corn on the cob. It stunk to high Heaven. And I used to open the door and, whoa, and it hit you. And the only thing it was like is sweet corn. Can’t go anywhere near sweetcorn now. Stunk. Vile. But two minutes and it was over.

Julie describes having total body irradiation. It was painless, but she felt like a caged animal and found the room cold.

And then I had to go down to the radiotherapy unit and this was the most painless thing that they did to me. But I remember laying there sobbing. I felt I was like a caged in animal. Obviously they said the only way they could explain it to me was, ‘The thickest part of your body is your head. So with radiotherapy we need to make everything the same thickness’. So they laid me down on this slab and I just felt like as a caged animal. They put foam around my neck, underneath my arms, across my waist, underneath my legs. All I had on was my underwear and this sheet over me and so my body was the same thickness all the way down, and there I was in this room and it was so cold. I just remember laying on the bed with my arms flat, staring up at the ceiling and shivering with cold. And the tears were just streaming down my face because I just felt so caged in. And I had to lay perfectly still and I could see these, out of the corner of my eye I could see these red rays going all over the place and they called it TBI, total body irradiation.

 

And I had to do that along with the chemotherapy twice a day, could have been three times a day, every day. And it was the most painless thing they did to me, but the most awful thing because of the way it was.

Julie found it hard to believe that she was finally being allowed home after six months in hospital, during which she had sometimes expected to die.

But by about the end of June, beginning of July, so it had been six months I’d been in London completely. And they came to me and they said to me, ‘Your blood has picked up enough and we’re going to let you go home.’ And I was like, ‘Really?’ And they said, ‘Yeah.’ And I was like, ‘Ooooh’ And I said, ‘And what happens now?’ They said, ‘Well you’ll come back as an outpatient.’ And I was like, ‘Really?’ And they were like, ‘Yeah.’ And I was like, ‘God.’ I never, I’d dreamt of that day, clearly, and I just never thought it would come. I really, really didn’t think it, I’d been so unwell through that transplant I really didn’t think I was going to make it. My parents were called up God knows how many times and I really thought this day is never going to come.

 

And I thought to myself, ‘Wow. I’m going to go home.’ And then again the nerves would kick in, ‘What happens if I’m ill? What happens if it comes back? Oh my God. Oh my God. What am I going to do? What am I going to do? What am I going to do?’ But they said, ‘No, listen, go home, enjoy it, and come back and see us’. It was then every week, and it will be for quite some time. ‘It will be every week and we’ll take it from there’.

Julie's stem cells were harvested on a machine for 16 hours over 2 days, at first via a line into a vein in her arm, later through one in her groin. The G-CSF injections were painful.

What was it like having the stem cells harvested?

 

Painful. Well we started off in this room and it was in my left arm. And I was on a bed and my arm was outstretched like that, and a pillow was underneath, and a big needle was in my arm. And they said, ‘Whatever you do don’t move your arm.’ And I said, ‘How long for?’ They went, ‘Well, eight hours.’ And it was like a huge tape recorder, if you like, and what was going around the tape recorder there and round to this side here, and what they didn’t need went back in to me. And what they did need went up into this little bag. But they found out after a while that it wasn’t coming out quick enough. And the pain, obviously, of the big needle in my arm, the heat from the light and my arm being outstretched like this, was incredible. So I said to them, ‘It’s not going to happen. It’s not going to work.’

 

So what they decided to do was to put another line in my leg but this time the needle being yea big. So again they got the doctors up. Laid me out flat. Loads and loads and loads of local in my leg and they cut my groin and they put it in. And once they did it and they sat me up, obviously this line was a lot bigger, and the blood was flowing out a lot quicker. But because they didn’t get enough in the one day then I had to go back for eight hours on the second day again with the line in the leg, which they let me keep that in overnight. And so it was sixteen hours over a two day period.

 

And then what they did is the little stuff in the bag they needed to go and take that away and to test it and to see that it had everything that it should have, everything that they wanted, and if they needed more then we had to do it again, if they didn’t then obviously we were good. And after the end of the two days they came to me and they said, ‘We think we’ve got enough.’ And I thought, ‘Oh thank God’, because I couldn’t go through that again. So literally for eight hours straight on a bed and not moving.

 

Did you have to have injections beforehand to boost your stem cells?

 

Yes.

 

What were they like?

 

Very painful. They came every day and they give me a shot in my leg. And one day my leg had this lump come up and really big bruise. And I just thought, ‘Oh my God. What have they done to me?’ And they used to come in with this blue tray and I just knew what that blue tray had in it. And I’d be like, ‘Oh here we go.’ And it really stung like crazy, but again they told me, ‘Stick with it. We know it’s painful but it will all do good in the end for when we do the harvest.’ And I kept on thinking, ‘Well if that’s good then that results in a good harvest which will result in it being frozen, cleaned and given back to me and that will be getting me better.’