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Nice People Thread Number 11 - A Treasury of Nice People
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Oh man. How do you turn autocorrect off on these things? Messaging my accountant, I'm sending her all kinds of lostinrates.Everything that is supposed to be in heaven is already here on earth.
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ukmaggie45 wrote: »Am about to pack up the computer ready to go home, but just wanted to say Generali, so sorry to hear your latest news. You sound remarkably cheerful, which is good.
Will be thinking of you and your family. Very best wishes from
Thank you ukmaggie45. I'm ok really. I feel well although in a little pain. I get tired, most likely because I'm on this crazy emotional roller coaster. There's a library just by where I work which has big leather armchairs so sometimes I book bogus meetings in my diary and go for a snooze. That helps. Ultimately I'm going to have to learn to live with a little pain.ukmaggie45 wrote: »Bwlchtocyn.
Bless you!
On a serious note, how the hell do you say that place? I would guess it approximates to Hi-welch-toh-chin. I used to work with a bloke called Hywl pronounced similarly to Howell just cut a bit shorter.Truly sorry to hear that your diagnosis has changed again. At least they have kept looking. Infinitely better to know what is going on and be able to do something about it. Not that it feels great knowing it, I'm sure.
What can you do? The diagnosis changes but the illness doesn't.
As you say, better to know what it is but I'll probably never get a proper diagnosis, just a best guesstimate. I'm used to dealing with risk. I suspect that a lot more medicine is like this than we're led to believe: a diagnosis is probably very often on the balance of probabilities rather than because it's definitely XXX.0 -
Doozergirl wrote: »Oh man. How do you turn autocorrect off on these things? Messaging my accountant, I'm sending her all kinds of lostinrates.
Well, she's had accounts of that for a couple of years.....
( I think I am doing generally better typing ATM?)0 -
As you say, better to know what it is but I'll probably never get a proper diagnosis, just a best guesstimate. I'm used to dealing with risk. I suspect that a lot more medicine is like this than we're led to believe: a diagnosis is probably very often on the balance of probabilities rather than because it's definitely XXX.
This exactly.
Diagnosis is an art and its good IMO to have doctors who are admitting they are fallible and not sure and want you to have the best outcome despite their lack of ability to say 'leon is definitely this type of lymphoma' or whatever but focused on what gets you up and running.
IMO that's the best kind of care, looking at what the result of the care should be rather than piddling about whether you have x disease or a rare form of y syndrome.
Gen, I have told only four people in real life so far ( neither of them my parents) that I might be having brain surgery this year. One of them was a very close friend who reacted very badly. I said EXACTLY what you have said, ' nothing's changed but that someone is considering trying to do something about some of it'. And its a huge truth. I frankly don't care what I have just wish it would go. While its not going I'd rather have most fun I can have while here, I am THRILLED the balance might be tipping in favour of surgery. Its all about how you come out of it.
You sound strong and positive. I'm impressed.
Nice people are generally pretty impressive.
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lostinrates wrote: »This exactly.
Diagnosis is an art and its good IMO to have doctors who are admitting they are fallible and not sure and want you to have the best outcome despite their lack of ability to say 'leon is definitely this type of lymphoma' or whatever but focused on what gets you up and running.
IMO that's the best kind of care, looking at what the result of the care should be rather than piddling about whether you have x disease or a rare form of y syndrome.
Gen, I have told only four people in real life so far ( neither of them my parents) that I might be having brain surgery this year. One of them was a very close friend who reacted very badly. I said EXACTLY what you have said, ' nothing's changed but that someone is considering trying to do something about some of it'. And its a huge truth. I frankly don't care what I have just wish it would go. While its not going I'd rather have most fun I can have while here, I am THRILLED the balance might be tipping in favour of surgery. Its all about how you come out of it.
You sound strong and positive. I'm impressed.
Nice people are generally pretty impressive.
Crivens, best of luck to you. As Woody Allen said in the film Sleeper, "They can't touch my brain, it's my second favourite organ"!
Nothing impressive really. I wake between 4 & 5 each morning and I suspect that's because I'm terrified. I will always try to be positive though. If I awake at a different time then it's because of pain. I need to work out how to manage the pain.0 -
As you say, better to know what it is but I'll probably never get a proper diagnosis, just a best guesstimate. I'm used to dealing with risk. I suspect that a lot more medicine is like this than we're led to believe: a diagnosis is probably very often on the balance of probabilities rather than because it's definitely XXX.
That's the situation I found myself in with the mel. It's worth keep going back and involving more experts until the differential diagnosis has percentages that you are comfortable with.
I don't know if it is useful, but this is what happened for mine (took 18 months)...
1. Local specialist looks at biopsy, can't make a definitive answer so refers it to:
2. Local panel for the hospitals trust, can't make a definitive answer so refers it to:
3. Regional panel for the local hospitals in this region, can't make a definitive answer so refers it to:
4. National expert panel. In the case of Melanoma I think this is St Thomas's, London, based. I didn't go, they sent my biopsy. Again they couldn't give a definitive and even at this point we were only at 60/40 which weren't good enough odds.
I then worked with DH (who has a scientific background and could read the academic studies) to identify an alternative, which took me into the area of genetics and found the global leader in this (based at the time in San Francisco). We approached the NHS and asked if they would be ok with asking for an additional opinion. They were ok and so paid for the genetic testing of the biopsy, which is actually quite a cheap option in terms of private medicine. That was still a differential diagnosis but the odds are better. The guy has since become the world leader in Mel, so I'm not going to get better unless there is a quantum leap made in diagnosis.
You still have to deal with the mental 10/20/30/40% or whatever could be the other way, which is why I celebrate my 5 year anniversaries... but the more you can reduce the number, the lower the headf*ck factor. I also asked not to go back for the annual check ups as I found that they were checking for things that I could visually check for, or ask a GP to do and the strain in the weeks before got to me. I still get referred back though when I find odd things to cut out.
Hope you don't mind me saying this. Like lir, this is the only place I talk about it, so it is a bit weird in a way and I don't know if I'm speaking out of turn. But I hoped that discussing the systematic way in which my percentages changed would help.Please stay safe in the sun and learn the A-E of melanoma: A = asymmetry, B = irregular borders, C= different colours, D= diameter, larger than 6mm, E = evolving, is your mole changing? Most moles are not cancerous, any doubts, please check next time you visit your GP.
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LOL ... most of my life's been spent glued to one chair for fixed hours, being closely monitored/watched over by a variety of bosses.... plenty of people around to enquire "where's ... X ... gone?" even if you've just popped to the loo!!There's a library just by where I work which has big leather armchairs so sometimes I book bogus meetings in my diary and go for a snooze.0 -
<yawn>
I have so much time without OH and Isaac here! Gentle starts to my day, extra cup of tea, peace and quiet. Lovely for a week.
I've drafted two sets of grounds for the Upper Tribunal and judicial review grounds since 7am, so now I'm going to take full advantage of my interesting condition and lie down on the sofa for a nap (-:...much enquiry having been made concerning a gentleman, who had quitted a company where Johnson was, and no information being obtained; at last Johnson observed, that 'he did not care to speak ill of any man behind his back, but he believed the gentleman was an attorney'.0 -
Crivens, best of luck to you. As Woody Allen said in the film Sleeper, "They can't touch my brain, it's my second favourite organ"!
Better than being one of those men who combine the two organs in one single place.........much enquiry having been made concerning a gentleman, who had quitted a company where Johnson was, and no information being obtained; at last Johnson observed, that 'he did not care to speak ill of any man behind his back, but he believed the gentleman was an attorney'.0
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