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Post by slowcoach on Jan 12, 2024 14:33:53 GMT 2
This morning I took the dogs out at six thirty.
It is so nice to have had a lie in.
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Post by ninchursanga on Jan 12, 2024 17:16:25 GMT 2
Oh my, six thirty is what I call way too early. Although the days that I do get up insanely early I do enjoy the early morning time.
Struck with a migraine today and what made me happy today is that now in the late afternoon it is finally fading away.
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Post by Netsuke on Jan 12, 2024 20:07:41 GMT 2
You poor thing, ninchursanga, being a fellow migraine sufferer I know how you feel. What do you take for migraines and do they work?
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Post by auntieannie on Jan 14, 2024 12:07:09 GMT 2
Hugs, Nin. I'm happy I'll have lunch with family. and even if mom is appalled at the price... I got some nice desserts from a really good place in town.
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Post by Scrubb on Jan 17, 2024 1:07:17 GMT 2
Today I attended a webinar on non-Hodgkins lymphoma, which is what I was treated for in 2015. There was lots of review and a bit of new (to me) information.
One comment about ongoing studies caught my attention. The presenter said that for the types that have always been considered treatable, but not curable (like mine), if a remission lasts 10 years, they don't know if that might mean it's never coming back.
My oncologist has always stuck to : "it's not curable, it'll always come back, but don't worry about it, don't bother me for details or more information, just go enjoy your life." (Though he does answer questions when I insis.)
So this is really quite interesting news for me. I'm currently 7.5 years in remission. It's somewhat uplifting to hear that actually, they aren't sure, and rather than worrying that the longer my remission lasts, the sooner the disease will come back, I may be able to shift my mindset to "the longer my remission lasts, the more likely it is to be permanent".
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Post by auntieannie on Jan 17, 2024 23:16:40 GMT 2
Very good, Scrubb. I also liked what you wrote in another thread, about taking steps to keeping healthy.
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Post by Scrubb on Jan 18, 2024 4:20:57 GMT 2
Today I'm happy because the temperature finally got high enough for me to go for a run! First time in a full week! Only -22C!
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Post by sophie on Jan 18, 2024 4:37:29 GMT 2
What makes you happy Scrubb would make me cry….
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Post by Netsuke on Jan 18, 2024 5:35:29 GMT 2
Today I'm happy because the temperature finally got high enough for me to go for a run! First time in a full week! Only -22C! Only…only… ONLY -22° C! I could not imagine anything so cold. The coldest I can remember would have been about 0° C or -2° C, and that was a very, very long time ago. It was so cold Jack Frost had been around overnight! Haven’t seen Jack for years and years and years!
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Post by slowcoach on Jan 18, 2024 15:14:39 GMT 2
... worrying that the longer my remission lasts, the sooner the disease will come back, I may be able to shift my mindset to "the longer my remission lasts, the more likely it is to be permanent". For wwat my opinion is worth I think you have been over pessimistic all along. And I shall try and illustrate why. I can think of three models for thinking about this: Christmas Shopping, Ticking Bomb, and Schrodinger's Cat Christmas Shopping has a fixed and well known end date, every day that you don't do it is a day less to do it in, and you know this is the case. Simiilarly for the condemned prisoner wihtout hope of reprieve. The Ticking Bomb has a fixed end date/time and even if it is known to its creator it isn't known to you. Every moment takes you closer to that fixed end date/time but that of itself should not convince you that your expected remaining time is shortening. From the perspective of Schrodinger's Cat the atomic decay that will start the deadly mechanism is a random event, we may know the decay half life but there is no fixed end date, the expected remaining time never changes. The most optimistic of the three is the Ticking Bomb. In this case it is reasonable to update your expectation of remaining time continuously as uneventful time passes. In practical terms, if you wanted to defuse the bomb and you knew it would take an hour but have no basis for picking a value for your expectation of remaining time, you might go for a long lunch and come back two hours later and if the bomb is still in one piece an expectation that it will last another two hours is a sound one. For certain the bomb is closer to its fixed end time but your expectation of that end time has receded into the future. The longer that it doesn't go bang the more time you might expect to remain. Strangely this doesn't change even if your expert, like the bomb maker knows full well the end date/time as long as they don't tell you what it is. It is all about information and inference from the very little information you have. As for me, after 7.5 years, in the absence of any other information I would expect another 7.5 years, basically with each passing uneventful day I would increase my expectation of remaining time by one day. Now you may have thought about this stuff a lot, and I don't want to insult your intelligence, but I expect others might be surprised by my reasoning. That while the end is coming closer one should act like it is moving further away. Obviously, if there is a surfeit of well known information then this is nonsense, not doing the Christas Shopping doesn't buy you more time and you should expect otherwise.
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Post by Scrubb on Jan 19, 2024 2:23:20 GMT 2
Well, given the information at my disposal up until now, I don't agree that I have been overly pessimistic. Mostly I don't think about it much and have always just thought about the next stint of treatment as "sometime in the future". But, according to my well-regarded oncologist, and everything I've ever read, a relapse was a sure thing at SOME point. Although, I did read about a study where someone died of something else, still in remission after 17 years. (Does that make sense? I mean to say that his or her lymphoma had not recurred after 17 years, when he died of something else.) Which made me start thinking that there must be some outliers who don't relapse for ~20 years or more. And then I thought "well, I'll be one of those outliers, then."
I did write that "Instead of worrying that the longer my remission lasts, the sooner the disease will come back..." but I should have reworded it, because I don't usually think about it that way, really. Every now and then, but not consistently. Usually, my mind set is more like "hmmm, 7 years! Obviously a really solid remission. Guess it'll probably go for at least 10 years, now" (even though I have no data or information to support such a theory).
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Post by auntieannie on Jan 19, 2024 23:22:40 GMT 2
yoga and a cuppa with my cousin.
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Post by sophie on Jan 20, 2024 3:23:56 GMT 2
Physio discharged me.. still need to take anti inflammatory pills for a few days along with icing the foot. Also have instructions to cut back on walking/ hiking until I get my new knee.
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Post by lumi on Jan 20, 2024 9:29:36 GMT 2
Today was Little Lumi's 6th birthday party. Thankfully we had opted not to hold the party at home as it was raining and it would have been very crowded for everyone to be indoors (our small patio is off limits as currently have contractors here repairing a faulty/leaking guttering and roof. All children who rsvp'd 'yes' showed up and I think they all had a great time. We went to a casual local art jam place and the children got to trace a design on a tshirt and paint it.
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Post by auntieannie on Jan 20, 2024 11:13:50 GMT 2
that must have been great fun, lumi!
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Post by lumi on Jan 20, 2024 11:51:08 GMT 2
It really was, Annie. My son loved it! It was a bit hard for me at times though as the behaviour of 2 of the boys was quite bad. I had expected that as I do know the kids, but they were worse than I had expected, even from the get-go.
My son was really confident and a great host, steppong away from the game each time a new classmate arrived and welcoming them to the party. He was also great at thanking people for coming when parents came to collect each kid. He is a more timid/shy child and often gets overwhelmed at these type of things, but we continue to work on it over the years and slowly his confidence grows. I am super proud of him today!!
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Post by tzarine on Jan 20, 2024 21:49:11 GMT 2
feliz cumple, little lumi! & lumi!
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Post by Netsuke on Jan 21, 2024 1:08:31 GMT 2
Physio discharged me.. still need to take anti inflammatory pills for a few days along with icing the foot. Also have instructions to cut back on walking/ hiking until I get my new knee. Another not so sudden realisation I need my eyes tested and new glasses. I read the above as “still need to take anti inflammatory pills for a few days along with slicing the foot” My first thought was gee, that’d hurt!
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Post by Netsuke on Jan 21, 2024 1:11:08 GMT 2
Today was Little Lumi's 6th birthday party. Thankfully we had opted not to hold the party at home as it was raining and it would have been very crowded for everyone to be indoors (our small patio is off limits as currently have contractors here repairing a faulty/leaking guttering and roof. All children who rsvp'd 'yes' showed up and I think they all had a great time. We went to a casual local art jam place and the children got to trace a design on a tshirt and paint it. Three cheers for the Mastermind who thought that one up. It’s brilliant, simply brilliant! Better than your average birthday!
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Post by lumi on Jan 21, 2024 1:25:04 GMT 2
Today was Little Lumi's 6th birthday party. Thankfully we had opted not to hold the party at home as it was raining and it would have been very crowded for everyone to be indoors (our small patio is off limits as currently have contractors here repairing a faulty/leaking guttering and roof. All children who rsvp'd 'yes' showed up and I think they all had a great time. We went to a casual local art jam place and the children got to trace a design on a tshirt and paint it. Three cheers for the Mastermind who thought that one up. It’s brilliant, simply brilliant! Better than your average birthday! There are far fancier (expensive!) options here. I had wanted to go toy a place that does some cool science experiments but it das more than double the price of the tshirt painting and it was a maximum of 1 hour. Of course you could extend that time by paying more but I already think it is ridiculous to pay so much for a child birthday party. My son has been to 2 classmates parties at a dance place which were fun so I looked to book the but the price nearly made me fall down - over $1200 for the basic party (and I think that was max of 10 kids too, so I would if needed to pay more). I actually prefer to hold the party at home but Mr Lumi didn't want to so I would of had to do everything myself which didn't sound fun at all (I already did the games etc before and after the tshirt painting, and the behaviour management for the whole party when it was an outside vendor). To have the house to clean afterwards too would have been too much.
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Post by Netsuke on Jan 21, 2024 3:20:44 GMT 2
Twelve hundred dollars for a child’s birthday party is … very expensive. Your son and his friends sound like they had a wonderful time at the party you gave him. He sounds like a very well mannered little boy.
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Post by Scrubb on Jan 21, 2024 4:29:31 GMT 2
sophie - do you know when you'll get your knee?
lumi- that sounds like a lot of fun! And I understand why you'd be proud of junior - so well mannered!
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Post by sophie on Jan 21, 2024 5:14:07 GMT 2
Scrubb.. I don’t have a date yet.. all I know is that it will be after Feb. 15… how much after is anyone’s guess
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Post by Scrubb on Jan 21, 2024 5:55:08 GMT 2
Well, let's hope it's not too long after!
The wait lists are really long here. My friend got on the list for a hip replacement last May or so, and they told him it would be at least a year. He put his name on the cancellation list, which they said doesn't always work out any earlier, but he did get a date for late February.
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Post by shrjeff on Jan 21, 2024 7:31:10 GMT 2
Well, given the information at my disposal up until now, I don't agree that I have been overly pessimistic. Mostly I don't think about it much and have always just thought about the next stint of treatment as "sometime in the future". But, according to my well-regarded oncologist, and everything I've ever read, a relapse was a sure thing at SOME point. Although, I did read about a study where someone died of something else, still in remission after 17 years. (Does that make sense? I mean to say that his or her lymphoma had not recurred after 17 years, when he died of something else.) Which made me start thinking that there must be some outliers who don't relapse for ~20 years or more. And then I thought "well, I'll be one of those outliers, then." I did write that "Instead of worrying that the longer my remission lasts, the sooner the disease will come back..." but I should have reworded it, because I don't usually think about it that way, really. Every now and then, but not consistently. Usually, my mind set is more like "hmmm, 7 years! Obviously a really solid remission. Guess it'll probably go for at least 10 years, now" (even though I have no data or information to support such a theory). kubler-ross introduced 'death and dying' half a century ago and we went to a conference with her back then... one of the presenters was an oncologist at the University of California Medical Center who spoke about his patients... several of them stated that they could wind up being run over by a truck rather than dying of the cancer... and they all died of trauma! BTW, he provided his patients with a lethal dose of medication on their bedside table - giving them some control over their life/death... None utilized it.
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Post by slowcoach on Jan 21, 2024 9:40:30 GMT 2
Well, given the information at my disposal up until now, I don't agree that I have been overly pessimistic. Mostly I don't think about it much and have always just thought about the next stint of treatment as "sometime in the future". But, according to my well-regarded oncologist, and everything I've ever read, a relapse was a sure thing at SOME point. Although, I did read about a study where someone died of something else, still in remission after 17 years. (Does that make sense? I mean to say that his or her lymphoma had not recurred after 17 years, when he died of something else.) Which made me start thinking that there must be some outliers who don't relapse for ~20 years or more. And then I thought "well, I'll be one of those outliers, then." I did write that "Instead of worrying that the longer my remission lasts, the sooner the disease will come back..." but I should have reworded it, because I don't usually think about it that way, really. Every now and then, but not consistently. Usually, my mind set is more like "hmmm, 7 years! Obviously a really solid remission. Guess it'll probably go for at least 10 years, now" (even though I have no data or information to support such a theory). I am normally pretty careful about anything that smacks of giving advice. I noted that it was a more general comment that might interest others, and that you may have thought on the subject at length. I also did not refer to your particular condition, treatment, or the expertise on offer. That said, I too, was acting on very limited information, i.e. the following quote, and I made an inference based on that. I characterised as pessimistic only the situation prior to your new information. It also seems that you would agree that the statement is pessimistic and I was not to know that you " don't usually think about it that way, really". I wished to indicate that there are rational ways of making inferences in situations where there is very little available information. ETA: I also tried to show that even though: if that point can not be quantified either generally or individually then it doesn't supply much information as to when it would be likely to happen or whether death by other causes would intervene. See shrjeff above.
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Post by Netsuke on Jan 21, 2024 10:18:31 GMT 2
Listening to the dulcet tones of whatsisname. Dean Martin that’s it good old Dino. Always had a soft spot for his movies, they were fun and usually pretty happy. Not like the rubbish churned out today.
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Post by auntieannie on Jan 21, 2024 23:35:50 GMT 2
surprise visit from my niece.
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Post by Scrubb on Jan 22, 2024 21:16:23 GMT 2
That said, I too, was acting on very limited information, i.e. the following quote, and I made an inference based on that. I characterised as pessimistic only the situation prior to your new information. It also seems that you would agree that the statement is pessimistic and I was not to know that you " don't usually think about it that way, really". Oh, absolutely! That's why I said I should have reworded how I said that, because it does come across pessimistically and as though it weighed on my mind.
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Post by tzarine on Jan 26, 2024 2:22:39 GMT 2
seeing our locksmith & our wine merchant
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