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Ann - Interview 14

Age at interview: 40
Age at diagnosis: 33
Brief Outline: Ann was diagnosed with acute myeloid leukaemia after various symptoms including recurrent infections. She was treated with chemotherapy, radiotherapy and an allogenic bone marrow transplant. She is in remission.
Background: Ann is a civil servant. She is divorced with no children. Ethnic background' White British.

More about me...

After experiencing a variety of symptoms including persistent infections and a boil on her leg, Ann had a bad bout of tonsillitis which recurred a few weeks later along with problems with her ears and feelings of lethargy. She also experienced a rigor (shaking due to high fever). The GP prescribed antibiotics and took a blood sample. Later the same day she was admitted to hospital where she had a bone marrow biopsy, which showed she had acute myeloid leukaemia. She was told her disease was treatable but she should expect six months of disruption to her life.

 
Ann had a Hickman line inserted and was given oral and intravenous chemotherapy. Although this made her feel hung over and caused hair loss it failed to put her in remission. She was then given a stronger chemotherapy and offered a bone marrow transplant from a donor. Having recently married she was reluctant to have this procedure and asked for a second opinion as to whether it was really necessary. She eventually decided to have the transplant and was prepared for it with high dose chemotherapy and total body irradiation, which made her very sick.
 
After the transplant Ann caught chicken pox/shingles and developed graft versus host disease (GVHD), which caused a skin rash all over her body. Other, lasting effects of treatment were an underactive thyroid, under functioning kidneys, an acidic gut, cataracts in her eyes, and an early menopause.
 
In total Ann was absent from work for eighteen months. After she had been discharged from hospital and was starting to feel better her marriage broke down. Although she is in remission she takes a variety of medications including something for her kidneys, a thyroid hormone replacement, antibiotics, an antacid and HRT.
 

Ann had started to feel generally unwell before having repeated bouts of tonsillitis accompanied...

Ann had started to feel generally unwell before having repeated bouts of tonsillitis accompanied...

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It was January of 2000. I got married the previous year in the August and I just started generally being unwell. Various little niggling problems but nothing that I could put my finger on until about the March, and I suddenly had a really bad attack of tonsillitis. I got rid of that. I had to be off, I was off work for quite a few days with it it was that bad. I then got another one in the May and I had problems with my ears and generally was just extremely lethargic, couldn’t get out of bed. There was nothing that they could tell me that was the matter apart from they were possibly going to remove my tonsils, which I was arguing against and said I didn’t want it to happen. I was given antibiotics, which I was allergic to.
 
And then I went back to see my GP. When I went to see him he actually sort of said to me, ‘I think we’d better take a blood test.’ And it was a bank holiday Monday that I was very, very ill and I actually had a rigor but I didn’t know what it was, to do with basically my body fighting the infection. The following Thursday I distinctly remember that my appointment at the doctor’s was at half past three. I had a blood test taken at half past three in the afternoon, at quarter to nine at night I got a phone call telling me to pack a bag and go in to the local hospital, which I did. I was just about to go to bed at the time so I do get very grumpy when I’m tired anyway so I wasn’t in the best of humours.
 

Ann had been told her diagnosis alone but asked the consultant to explain it again later with her...

Ann had been told her diagnosis alone but asked the consultant to explain it again later with her...

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My husband at the time listened to what the doctor said, went sort of grey and then I sent him home because he was due at work the following day, thinking that they would just keep me in overnight and I’d be fine, they’d be sending me home the following day after they’d given me a blood transfusion. The following morning I had a bone marrow biopsy by a doctor that had never done them before from what I can gather. And then following on from that I was told about three hours later that I’d got acute myeloid leukaemia. I was told on my own, which to me wasn’t a problem but my husband did have a specific issue with that.
 
And I then told my husband what it was and then my mum and dad, my parents actually turned up at the hospital because I lived about forty, fifty miles away from where they live. They turned up, told them the news and then the consultant came to speak to us and basically told my parents and my husband what he’d already told me, that basically it was treatable. There was no reason why I shouldn’t get over it but basically look forward to six months of disruption.
 
That reminds me that you said when you were given your diagnosis you were alone.
 
Yeah.
 
You didn’t mind being alone for that but your husband wasn’t happy.
 
My husband wasn’t very happy, no. But I just ratified it to myself that if my husband had said something, I didn’t understand how the consultant could console him when it was me that it affected. So I did understand why he’d told me on my own. And then he sort of sat down with me and explained what they were going to do. And then I said, ‘Right, when my mum and dad come later, my husband, can you explain it all to them as well?’ Which he did. He was very, very good and he explained that to them. And then that’s when my husband said, ‘Why did you tell her when she was alone?’ He said, ‘Well because we can’t.’ You just don’t know how somebody else that’s not affect-, I’m not saying he wasn’t affected by it, but it wasn’t him that they were talking about, it was about me so they couldn’t take on board what he was going to say.
 
So you think it was actually their decision to do it that way and that it was the right way to do it?
 
I think it was the right way to do it.
 
So at least you didn’t have to tell your husband, they did it for you?
 
I told them what the diagnosis was. And then just said that they were going to get the consultant to come and speak to them as well and me at the same time because you don’t take it in the first time.
 

Ann was told about options for preserving fertility but was not encouraged to pursue them and was...

Ann was told about options for preserving fertility but was not encouraged to pursue them and was...

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Did they offer you any fertility preservation at all?
 
No.
 
Did they talk about it?
 
At the time, I’m going back about seven years now, it was very experimental. The hospital actually got me something from a hospital in Manchester which explained what they would need to do IVF in the future. And I think at the time they couldn’t freeze eggs but the experiments were to do with removing part of your ovary and then putting it back into your arm and seeing if things would happen. But they said it was very experimental. It had not actually been done, they’d gone through a lot of research with it and I was again told not to consider waiting for something like that to happen.
 
I was always very conscious because I’m sort of, maybe it’s because I don’t understand a lot of medical jargon, that I thought I felt that if they were going to try and harvest eggs from me it would stimulate something, what else could they stimulate in my body? And I think that was a very grave consideration of mine. I didn’t want the leukaemia to come back.
 

After her stem cell transplant Ann developed a red, burning rash all over her body due to GVHD....

After her stem cell transplant Ann developed a red, burning rash all over her body due to GVHD....

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Okay, tell me about graft-versus-host-disease. You said it was quite a bad case.
 
Yeah.
 
What are the symptoms you get with it?
 
With me, when I left hospital after my transplant I was actually given an information sheet with the symptoms to look for, and it was to do with you could have problems with your gut or your liver were the most common. I started off, I was actually away on holiday, I went to America on holiday not long after my transplant, possibly rather stupidly, and I started with a very red, burning rash on my legs and my body, and it sort of spread to most of my body whilst I was away on holiday. But it was in the last few days so I didn’t worry about it. I just kept putting moisturising cream on and having baths with oily stuff that I’d actually taken with me because I did get a lot of dry skin following the transplant.
 
And I went, I got myself an appointment at the hospital, went down to see them and they just immediately told me what it was, and the remedy was to up my anti-rejection medication until it was under control. Also steroids were quite widely used to control it as well. And then it took quite a while to get the balance between the anti-rejection drugs and controlling the rash that was all over my body at the time. And now I just get little bits of eczema. Usually it’s round my neck, which is a classic graft-versus-host-disease place to get it, it was all sort of round your neck area.
 

After 18 months off work Ann returned part-time at first then full-time; working mornings helped...

After 18 months off work Ann returned part-time at first then full-time; working mornings helped...

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Did you go back full time straight away or did you phase it in?
 
There’s all sorts of different things you can do to get yourself back to work but I was at the point where I’d exhausted all my sick pay. So what I did was I went back and I just worked mornings. But I’d got a lot of holidays so I was taking the corresponding afternoons as holiday. But I was literally, the first few weeks I went to work in the morning, came home at lunchtime and I went to bed until about four o’clock when my husband came home from work. I did that until about the Christmas time and then I went part-time. I just did five short days. Because in a way you do get out of the routine of getting up, getting ready, getting in your car and driving to work, and that’s what I had to get used to doing it five days a week. So I did that for I think about eight months. Then I went back full-time and I’ve been full-time ever since.
 

Ann had 6 months full pay then 6 months half pay plus Incapacity Benefit, then sick pay at...

Ann had 6 months full pay then 6 months half pay plus Incapacity Benefit, then sick pay at...

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Presumably your job was secure all the time that you were off…
 
Yeah.
 
…given who you work for? And presumably they had no excuse but to give you everything you were entitled to?
 
Mm.
 
And you knew your rights I would imagine?
 
Yeah, I mean I’ve worked for the Department [of Work and Pensions] for over 20 years so at the time it was probably about 13, and I’d got about 13 years service so I had all my entitlements that, I knew what I was entitled to, yeah.
 
So for the benefit of other people watching this, what did you get from your employer?
 
I got six months full pay. I got six months half pay. Possibly the benefit rules have changed since but during that six months I also claimed Incapacity Benefit. And then after that six months I got onto what they call pension rates, sick pay at pension rate, which is, it’s sort of not reckonable towards your years of service and your pension. And I was on that for about three to four months.
 
So you managed your finances all right. Was there any hardship?
 
Well because I was married I mean obviously my husband was working but my husband’s self-employed. So not necessarily between us there wasn’t, but obviously I was bringing in about a third of what my normal wages were.
 

Ann belonged to a health society which refunded all her costs of travelling to and from hospital...

Ann belonged to a health society which refunded all her costs of travelling to and from hospital...

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Were there any other costs to being ill? Financial costs?
 
I would say it would be to do with the travelling. I mean I know they always explain to you that you can get the transport services but I’m actually a member of a health society, which is for, I think it used to be the old sanatorium society or something strange like that, for civil servants and post office workers, and they were absolutely fantastic with me. And they used to do on a monthly basis, I used to tell them which hospitals I’d been to and I used to get petrol money. But they also explained that if I wasn’t well to get a taxi and they would reimburse me the cost of the taxi.
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