It's a bastard isn't it....
I have visited a friend today to be informed that her young daughter, of the same age as mine funnily enough (5), has been diagnosed as terminal, waiting on more tests currently but essentially not going to reach adulthood either way, could be months or years depending on the result of the tests that are being carried out this week. One result, it's months, the other its possibly years.
She has a very rare disease which acts like a cancer, so it spreads, but isn't a cancer so isn't treatable by means of chemo, etc. Symptoms started several months ago which a lack of energy etc., admitted to hospital, after a few months of overcoming first line support, to the childrens ward. Then they couldn't diagnose the disease because no one in that hospital had ever come across it. Anyhow several more months down the line they have realised what it is, and apparantly only a handful of cases in the country, and not many more worldwide, and no cure. They said they wished for a form of cancer.
I wish I'd have written down the name but I have a bit of an aversity to diseases, as unfortunately I have a history of my own, and every time I see the quack it makes me feel like I only have weeks to live myself. It was expalained to me as a thickening of the membrane that enables the oxygen transfer to the blood in the lungs which has now spread to the heart causing the build up of fluid around that she has had to have drained for the last couple of months or so. pulminary-something or other, but then again I shut off a bit at that point - having been on a pulminary something or other ward for around a month or so reasonably recently.
Don't know why I am posting here, maybe a glimpse of hope knowing what intelligent people you lot are, but I really do doubt her hopes,maybe just a vent to the straight talking people you seemto be. If medical researchers had the drive of a contractor in some situations - sink or swim sometimes- you JFDI. Then again it's driven by the funding isn't it.
As an aside, and by the way I am writing this having seen off almost half a bottle of malt and I ain't finished yet, and yes I am a grown man crying, can I gift them the money for something as cheesy as a trip to disneyland or some such and claim the ******* tax back on it as fundamentally tax shouldn't be payable in such circumstances, shirley. Maybe I sould stick this in accouting.
Maybe i'll sober up enough on the 5.50 to Euston in the morning.
Sorry to vent here, I hope I don't upset anyone. Monday morning is a bastard at the best of times.
Vent over and I was about to delete it as it's done it's job but ah well at least i'll get to read sober(ish) now.
I have visited a friend today to be informed that her young daughter, of the same age as mine funnily enough (5), has been diagnosed as terminal, waiting on more tests currently but essentially not going to reach adulthood either way, could be months or years depending on the result of the tests that are being carried out this week. One result, it's months, the other its possibly years.
She has a very rare disease which acts like a cancer, so it spreads, but isn't a cancer so isn't treatable by means of chemo, etc. Symptoms started several months ago which a lack of energy etc., admitted to hospital, after a few months of overcoming first line support, to the childrens ward. Then they couldn't diagnose the disease because no one in that hospital had ever come across it. Anyhow several more months down the line they have realised what it is, and apparantly only a handful of cases in the country, and not many more worldwide, and no cure. They said they wished for a form of cancer.
I wish I'd have written down the name but I have a bit of an aversity to diseases, as unfortunately I have a history of my own, and every time I see the quack it makes me feel like I only have weeks to live myself. It was expalained to me as a thickening of the membrane that enables the oxygen transfer to the blood in the lungs which has now spread to the heart causing the build up of fluid around that she has had to have drained for the last couple of months or so. pulminary-something or other, but then again I shut off a bit at that point - having been on a pulminary something or other ward for around a month or so reasonably recently.
Don't know why I am posting here, maybe a glimpse of hope knowing what intelligent people you lot are, but I really do doubt her hopes,maybe just a vent to the straight talking people you seemto be. If medical researchers had the drive of a contractor in some situations - sink or swim sometimes- you JFDI. Then again it's driven by the funding isn't it.
As an aside, and by the way I am writing this having seen off almost half a bottle of malt and I ain't finished yet, and yes I am a grown man crying, can I gift them the money for something as cheesy as a trip to disneyland or some such and claim the ******* tax back on it as fundamentally tax shouldn't be payable in such circumstances, shirley. Maybe I sould stick this in accouting.
Maybe i'll sober up enough on the 5.50 to Euston in the morning.
Sorry to vent here, I hope I don't upset anyone. Monday morning is a bastard at the best of times.
Vent over and I was about to delete it as it's done it's job but ah well at least i'll get to read sober(ish) now.
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