Elaine - Interview 06

Age at interview: 39

Age at diagnosis: 35

Brief Outline: Elaine was diagnosed with acute lymphoblastic leukaemia after a persistent sore throat and various other symptoms. She had 4 courses of chemotherapy (intravenous and intrathecal) followed by radiotherapy and a bone marrow transplant. She is in remission.

Background: Elaine is a housewife and mother. She is married with two children aged 9 and 10. Ethnic background' White Scottish.

More about me...

One morning Elaine woke up and didn’t feel quite right but was too busy to think about it. A few months later she had a persistent sore throat and went to her GP, who said it was a viral infection that would go away. She later developed pains under her ribs which the GP suspected was a pulled muscle from coughing. Then her health deteriorated and at times she had difficulty looking after her children. She had pains in her legs, headaches, bleeding gums, lumps behind her ears, tiredness and breathing difficulties. Over the next three weeks she went to the surgery twice more with the headaches and sickness and was given two courses of antibiotics and told it would go away. On a third occasion she went about a different problem and the doctor suggested a blood test. A few days later the doctor phoned and asked her to come in to get the results, which showed she had leukaemia.

 

The next day she went into hospital where she had a bone marrow biopsy and a lumbar puncture and told the definitive diagnosis was acute lymphoblastic leukaemia and that she would have died within two weeks if it hadn’t been caught when it was. She would need to stay in hospital for at least a month to have chemotherapy and would be in isolation with limited access to her children.

 

She was started on chemotherapy which made her feel sick, she gained weight from the steroids and started to lose her hair. After a month they allowed her home for a few days during which time she developed a blood clot in her leg and had to be given warfarin daily. During the next month she had intravenous chemotherapy daily as well as a weekly dose of chemotherapy into her spine (intrathecal) to prevent leukaemic cells entering her brain. Then she was allowed out again until her blood counts recovered sufficiently to start a further course of daily chemotherapy. She had four courses in all. After the fourth course she developed pneumonia. After three weeks at home with the family she went to a different hospital where she had a week of radiotherapy first to her brain then her whole body as preparation for a bone marrow transplant using her brother as a donor. The radiotherapy caused burns in her mouth and gullet and she developed thrush and she felt so ill that she was given morphine. She was allowed home a few weeks after the transplant and three months later was told she was in remission.

 

During her time in treatment Elaine’s husband was able to take time off work with full pay to look after the children with support from Elaine’s best friend. The children came to see Elaine in hospital twice a week except when they caught a cold, and she spoke to them on the phone every evening.

Elaine accepted her hair loss; she had a wig from the NHS but didn't like it and wore it only when going out, not at home or in the hospital.

You said you wore a wig.

 

Yes. Yes.

 

Did you wear the wig all the time or just sometimes?

 

No. I only wore the wig if I was going out. I didn’t wear it in the house or in the hospital really. Very uncomfortable. Because I knew it was a wig, nobody else would probably have known, but I just didn’t like it. Like I say, I only wore it if I went out.

 

Was it supplied by the hospital?

 

Yeah. Well you had to go up to [city] and get fitted. There was a shop up in [city] that you went to. I got fitted for it and stuff. It was okay. I wasn’t bothered about losing my hair. It didn’t bother me as much as I thought. You know, I thought I would have been a lot more upset. But I just had accepted the fact that this was going to happen. There was nothing I could do about it so I just had to accept it and it was going to grow again anyway. I knew that so, you know, for a few months I was bald.

Elaine told her children that she had 'a bad bug' in her blood; she didn't use the word 'cancer' and answered their questions truthfully. She later gave them a booklet from Leukaemia Care.

How did you go about explaining to them what the trouble was, or did you not?

 

All I told them, I just felt when they were, well, six and seven, I felt they were maybe a bit young to understand, so all I said was that I had a bad bug in my blood and the doctors were going to try and fix it for me. And when I became a volunteer with Leukaemia Care they had a lot of booklets on talking to children about it, explaining to children what had happened to mum. So I sat them down and I gave them the book to read and I let them ask questions about it. So they do know that I had leukaemia, they know all about it, and I had chemotherapy and their uncle donated his bone marrow, they know all that now.

 

But that was after the event presumably was it?

 

Yes. Yes. At the time it was just, I had a bad bug in my blood. We never used the C word. I still don’t like to use the C word, I always say leukaemia.

 

Do you think they understand that it’s cancer? Do they know about it?

 

Yes. Yes. They know it’s cancer. I don’t think they know what cancer is or how bad it could be. I don’t think so anyway. Although occasionally ask me questions about it but not very often. It’s happened. It’s done. It’s by the way. Mum’s still here. And that’s one of the reasons I wrote my diary as well so that when they’re older I can give it to them to sit and read if they want to read it anyway. It’s up to them.

 

But they know mum was bald and mum’s got a wig and used to have a laugh at this.

 

Did they see your Hickman line?

 

Yes they did.

 

What did they make of that?

 

They just asked, ‘What’s that mum?’ And I explained to them what it was, ‘To save mum getting jabs in the arms all the time they use this’. ‘And was it sore?’ ‘No.’ ‘Can you feel the stuff going in and out of your body?’ I said, ‘No. Don’t feel a thing.’ But they did, they asked questions and I told them. I didn’t lie to them. I told them straight up what it was and what happened and they were quite happy. They were quite happy.

Elaine wasn't bothered initially by becoming infertile as she already had 2 children, but when it happened it made her feel broody.

Presumably some or all of your treatment will have had an impact on your fertility. Is that right?

 

Yes. When I first went in, and I think it was the Tuesday when I went in, they asked if I had a family, and I said, ‘Yes. I’ve got a wee boy and a wee girl.’ And basically they told me that I would become infertile and that would be it basically, that even if I wanted to they didn’t have time to take any eggs and freeze them. They just, I had to get my treatment there and then, right now. End of. No questions asked. There was no ifs, buts, or anything, so that was that. Fair enough. Okay.

 

How did you feel about that?

 

At the time I was like, ‘Right, Okay’, not really caring, ‘Start the treatment’. As I told the doctors, ‘Do what you have to do no matter how painful it is just get rid of this.’ That’s what I says to them, it’s just a side effect. I was very lucky I’ve got my two kids. I’ve got a wee boy, I’ve got a wee girl. I was quite happy.

 

Ah, I wasn’t happy. There was a stage I went through actually maybe about two months into the treatment, and oh I just, ‘I want a baby.’ I just got so broody. I don’t know what it was, whether it actually kicked in that that was it. My periods had stopped. Nothing was going to happen again. That was it. And I says to my husband, ‘I really want a baby’, things like that. ‘Well, you know you can’t.’ ‘Yes I know but I just really want one right now, I need to have a baby.’ I says, ‘I’ll be fine. I’ll get over it.’ And I did, about a week later that was me, I was fine. But just at that, I don’t know whether it was just, it kicked in in my head that even if I wanted to I couldn’t.

 

Do you have any regrets now?

 

No. No.

Elaine asked her husband to come home from work to tell him the diagnosis. She couldn't face telling anyone else except two close friends, so her husband phoned the rest of the family.

What was it like telling other people about your diagnosis?

 

It was actually my husband that did it. I couldn’t do it.

 

You couldn’t because you were ill in the hospital or because you couldn’t face doing it?

 

I couldn’t face it. Obviously that was the Monday. I had been to the doctor and came back up the road and when the doctor had said that, ‘It looks like leukaemia you need to go to the hospital.’ And I came up the road and I had to phone my husband. I thought I need to get him home because he’d spoke to me and said, ‘Tell me what the doctor says when you come back.’ But obviously I’d been in tears down at the doctors and stuff and I just phoned and said, ‘Come home.’ So he came home and I said, ‘It looks like leukaemia der der der’…

 

Went on the computer. Had a look at a few things. And I says, ‘You need to phone my sister-in-law. Need to phone.’ He’s like, ‘Right. Okay.’ So he phoned my sister-in-law and told her what was happening, I was going into hospital. No one actually told, well my friend, my best friend, I phoned her. My husband phoned her, spoke to her. And he phoned my sister-in-law and told her, and then I phoned another one of my close friends and told her. How I managed to tell her I don’t know but I did anyway.

 

And then the Tuesday once we got the actual diagnosis. My husband came home that night and basically phoned whoever else needed to know. He phoned his dad. Phoned his brother in England just to let everybody know. But it, no it was my husband that did it.

Elaine felt bad about leaving her children but was glad their routine was normal; they had their dad, who had 8 months leave from work on full pay to look after them.

So what happened to your kids all this time that you were in hospital?

 

My husband, he got time off his work. He went to his work on the day that I’d got diagnosed, the Tuesday, he went down to his work to speak to them to ask, because he’d only been in this, it was a new job he was in and he’d only been there for six months, so he didn’t know what was going to happen. But they basically told him, ‘Look. Go home. Look after the kids. Do what you have to do. Just keep in touch with us every so often. Let us know what’s going on.’ Full pay. I mean he was off for about seven and a half, eight months I think from his work. I mean his work were fantastic. They were really, really good.

 

So the kids were, you know, the only thing that was missing from them was me. They were still getting up in the morning, going to school, going to dance and going to, you know, the things that they were going to. And my best pal at the time as well she helped. Well she still is my best pal. She was a great help as well, looking after the kids and making sure my husband was organised. Making sure he was organised. Showing him how to work the washing machine because, you know, he was just thrown right in at the deep end.

 

So how did you feel about having to desert the children for such a long time? Or were you just feeling too ill to really think about it?

 

No. I felt really bad because I had always been there for them, because I gave up my work to bring the kids up. But I was glad in a way that my husband was still going to be there, so hopefully it wasn’t going to affect them too much. And they seemed quite happy, they seemed fine about it. So I was kind of, I was settled in the fact that they had their dad. He was there. They weren’t getting put here or put there or, you know, their routine wasn’t getting upset. And I spoke to them every night. I had a phone in my room and spoke to them every night before they went to bed. So, you know, their dad was there I didn’t feel too bad.

Elaine's total body irradiation was painless but the twice-daily commute to the radiotherapy unit was tiring.

What was it like having the total body irradiation?

 

Didn’t feel anything basically. Just lying on a table in a certain position, your arm up for ten minutes one side and then they come in, turned the table round, ten minutes the other side. That was it. Twice a day. At the beginning the Monday, Tuesday was okay but by Wednesday I was starting to feel tired because I was having go half eight in the morning and half three in the afternoon to the cancer unit for the radiation. And I was getting really tired by the end of it. Feeling very sick as well. Having to wear a mask to go from the hospital to the cancer unit. They had a taxi for me but I had to wear a mask over my face and it just made me feel even more sick. I don’t know why. But yeah, just really, really tired. It was like an effort actually to get out of my bed and get ready.

After having total body irradiation (TBI) Elaine's mouth and oesophagus were painfully blistered and her mouth filled with thrush. Antiseptic mouthwashes and morphine helped.

But it was after that because of the radiation and stuff it had burned all the insides and my mouth it filled with thrush. And I mean it was like just my whole mouth was blistered and it was agony. And right down my gullet it was all burned, so it was like oh, it was horrible, absolutely horrible.

 

And you had that horrible thrush…

 

Yes.

 

…after it too. Did they give you anything to help with that?

 

At the beginning they gave me mouth washes, but then with my mouth getting so sore, so painful, they just upped the morphine. You know, I was out of it for about a week and a half. And then once the pain started going down and I was starting to maybe have some ice cream or soup or something. They gave you an antibacterial, antibiotic mouth wash with antibiotic in it to kind of help numb your mouth a wee bit to help you take some soup or some ice cream. Just so you were getting something.

 

So yeah they were really good. If you asked for painkillers you got it. I had really bad heartburn at one point. I was in tears with the pain because of the burning. And they come in with the hot water and peppermint to help, try and help it, which it did help eventually.

During her illness Elaine's husband received supportive telephone calls from his father, brother, friends and colleagues, and was offered counselling at his workplace if he wanted it.

Do you think he had people to talk to about his fears and worries?

 

Yes I think he did. I think he did. He’s quite close to his dad who lives in Australia but I think he spoke to him a few times. His dad kept in touch. He would phone, obviously to see how I was as well, and he offered to fly over the day that he found out, and, my husband’s like, ‘There’s nothing you can do so there’s no point.’ But I think he spoke to him a few times and he has a brother down in England and I think he spoke to him as well. They kept in touch a lot with him, and obviously friends up here as well popped in to see him and phoned to see how he was keeping. And the work as well, his work were very good, they would phone up and ask how I was and how he was, and stuff like that. And if he wanted to talk there were people at his work he could go and speak to as well.

Elaine's brother was delighted to be a perfect match for her and was determined to donate his stem cells despite his fear of needles. His cells were taken by inserting a needle in his pelvis.

How did your brother feel about being a donor?

 

He was delighted, he was absolutely delighted that he was a perfect match for me. But he’s terrified of needles, terrified of hospitals, needles especially. And when he first went up to get tested, it was just a simple blood test but my brother just about passed out. They had to lie him down. His blood pressure was sky high. But he got there eventually.

 

He was delighted that he could do this. But they kept asking him right up to the very end until they were even taking him into the operating theatre, ‘Look. Are you sure you still want to do this? You don’t have to do it. You can back out.’

 

And obviously he was like, ‘No. This is my wee sister.’ And he was sore after it. He was really sore after it for quite a wee while but no, absolutely delighted that it went the right way. Everything went the way it was supposed to go.

 

How did they take the bone marrow out of him?

 

Just the same way they did with me. They went in through the hip bone at the back but they had a surgeon at either side and I think they took three different lots, I think it was about, it was a litre and a half of bone marrow they took from him. So obviously he was knocked out at the time.