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AmandaAmanda

Amanda

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Intimate relationships: We got married a bit sooner than we might have done otherwise, but we would've got married pretty soon anyway, we really did want to be together. There was an awareness that our time together might be really short, so when we were promising to love each other in sickness and in health, very aware that sickness was on the agenda. The bit about 'Until death do us part', feeling that might not be very far away. So there was that moment when it felt very sad. But that was only a moment in what otherwise, as I say, was a very happy day.

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Finding out: I would say actually the point of diagnosis did start a progress of grieving and a process of bereavement. It wasn't the same as when I lost him for real. But I know I did, I just. I suppose at that moment I felt I lost my future with him.

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Love: So he was my soul mate. So all the other things where we didn't really get it right with each other because, say, he had some growing up to do and I think - my response to his diagnosis in so much as my terrible feeling of being so frightened of losing him, instead of being able to just get along with it, just being so frightened, people don't get it right in relationships all the time, but so - all those things that were wrong, we still loved each other so much. We just belonged to each other, just always did and I think we always will.

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Children: We would've tried [sperm washing] again, but I say, the whole thing was really horrid and just after we came back we heard that there was going to be a doctor in England doing it, so I got in touch with him and he said, 'Oh yes, the programme will be going ahead in 12 weeks'. But it never happened because there were problems over the ethics committee or whatever. So it went on for years, at least two years, where they kept saying to us, 'Oh, next six weeks, it's going to happen in six weeks'. It's alright when you're still hoping that, okay, we might just get there in time. But the programme actually got under way just about the time that Andrew died, because I had a letter the day after he died to say we were invited to go along to the clinic. Great timing really.

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Anger and blame: Sometimes when I'm at work, because I'm still at Treloar's, I have this sense of those boys who used to run around being naughty and boisterous and noisy and stuff and I just think what a loss, what a terrible loss. So many of them were just full of life and laughter. So many of them were very clever or talented in acting or various other things, and they've just all gone. And Margaret Thatcher's government didn't care, the present day government haven't cared enough to look into it and the blood companies don't care. Nobody really cares. All that loss.

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Support: The Haemophilia Society were an absolute dead loss as far as I'm concerned. I think they were diabolical. In fact, after Andrew died, I had a lot of nightmares and one of them, I do remember, involved the Haemophilia Society and me standing on a soap box somewhere in London complaining about the Haemophilia Society, how awful they were and how they hadn't supported us. And the Haemophilia Society I think should've been making the MacFarlane Trust work better, they should've been championing the cause of their members, and also should've been doing a lot more with government to highlight the issues. It seemed to me as if they did very little.

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Compensated?: And money doesn't make any difference in some ways, but it does seem like a bit of a slap in the face when someone says, 'Well widows can have it, but only if they've been widowed in the last however many months or if they're widowed since such and such a date'. You think, 'Well, so my loss is different because it happened earlier?' You know, you could say well my loss was greater, because I had my husband for less time, I mean, all sorts of ways of looking at it, but it just seemed like another slap in the face.