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Haydn
‘The feelings of guilt are just awesome...’

Haydn

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Intimate relationships: I think we both realised what they were going to tell us. They related that the tests had come back positive and it was very emotional. Very. I sobbed my heart out. It's strange when things happen to you; you deal with them and you try and instil in people around you that everything's okay and that it's going to be fine. But when it happens to your wife and you know that it's come via you, the feelings of guilt and blaming yourself are just awesome...

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Secrets and stigma: There was never going to be a bloody perfect time to tell your sons what was happening. But it seemed better to tell them when we seemed pretty reasonably healthy, than to tell them when we were rushed into hospital with some life threatening condition.

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Help and support: We were in the waiting room outside, waiting to go in and so forth, and we just decided we'd all wait for each other; and whatever the results were we'd go and talk about it and we'd have a pint in the pub opposite called the Birchgrove pub. We decided that we would keep in contact and we would meet up once a week, or once a month, to see how we are and how we're coping, and if there was anything we could do for each other; and maybe even send out some kind of memo, or put some notice board announcement in the unit, to suggest that if anybody else had been given this information, that they join us at the pub, on a Friday evening or what-have-you, and talk about it if they so chose. And it seemed to snowball...

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Compensated?: As the years went on - '88, '89 - it didn't seem a lot of money to acknowledge or address the severity or the absolute horrendous situation we found ourselves in. I felt pretty disgusted and insulted by it.

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An unexpected future: As the years progressed, you would think that you'd become more at ease with it because you seemed okay. But it didn't seem to work that way. It worked in completely the opposite way; you became more anxious. Because you thought: 'Right, that's five years I'm counting ... it's got to be next year then!' and then that year would pass and then you'd think, 'Well, that's another year.' It seemed like eternity before I did start to think that maybe I could plan next year ahead of us.

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Telling this story: I've feared for many years that what gets read in future generations about history won't be factual. It'll be what the government want to believe or want the general public to believe. And that's a sin in my eyes, because history is the only way that we'll proceed in life. If we don't learn from history, then there's no hope for us

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Personal reflections: It was only when youngsters started to pass away that we really started thinking seriously: 'What are we doing right? Why is nothing happening to us? Why am I still reasonably healthy?' I just put it down to our - mine and Gaynor's - approach to it, that that we must stay focussed and positive and not dwell on the worst.