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Author Topic: Keeping Death In Check  (Read 8230 times)
rovingjack
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« on: April 09, 2014, 10:21:25 pm »

I Must admit I still like the legend of playing chess against death. The story goes that persons who win a game against death get to extend their stay in the mortal realm. But also one of the classic depictions of this story also makes reference to the fact that not only does one get an extension when you win, but you can still live longer simply by the playing of the game, as however long the game takes is tacked on past the point of when one might have died.

So here we are, making our strategies to win the game and get more time, at the same time layering it with the strategy of the fact that the longer the game lasts the more time we still have. So win or lose we still have a measure of time which we can use to the best of our ability and get the most meaning we can from it before the outcome is decided.

What I will be doing, and you are welcome to join me in the process, is take it one day at a time and each day make my strategy for what's to come, Take my best step toward trying to win and then having bought the day with my move... use the day as fully as possible.

Today as a practice in building optimism I'm playing with the metaphor of a chess game to exercise creative strategy toward optimizing the length of the game:
Just for the sake of the metaphor I looked up the longest possible game in chess. The longest professional game played lasted just 269 moves and could only end in a draw because of a special rule where neither player made a capture or moved a pawn in the last 50 moves so the game was called. Another way of running the calculation came to the mathmatically possible 5948 moves, but that is contingent on one of the players claiming a draw within the bounds of the 50 moves rule. If none do so, the game can continue indefinitely. The average is 40 moves. And the shortest real play by professional players without offers of draws, defaulting, or surrender is 17 moves(But that is moves per game, but there is an old school rule that is not used much these days, called adjournment. You call the rule, write down your move and put it in an envelope and the game is resumed at a later time, usually the next day.)

So using that information I'm building the mental image of a move a day (and death makes their move before my next day comes). So the average game would get me a game of 20 days, the shortest would be 8 days; and based on my current situation those would be a respectable milestones. Knowing to plan ahead that the worst I could do is 8 days, and to use the next 8 days to make the most important descisions and arrangments so that they do not make a burden on me or those I care about. And when I pass that milestone I will proceed on to makeing the descisions most important to me before the twenty day mark, so that when that day comes my life is in order should it be my last. And after that I will do what I can to maintain that state of affairs, such that I can focus on gaining as much as possible from each day after that to the conclusion of the game. And what is the longest possible game? a bit over 8 years.

I think if I can make it to this time in 2022 that would be a game well played. But remember at that point it is just the end of the game, what comes next tells us who won the game.  Grin And I'm in it to win it.

So, what say you?
Shall we play a game?

Edit to add:
MILESTONES: 8 days [Thursday April 17, 2014] (the short game), 20 days [Tuesday April 29, 2014] (the average game), 134 days [Thursday August 21, 2014] (professional long game), and 8.1 years [Friday May 13, 2022] (The longest possible game).

I will make posts at the very least on those days, likely one or more a day at first, as long as I'm able. With things like what I'm doing to fight to win, what I'm doing to make peace and get my affairs in order, and then what I'm doing to make the most of my days. And I'll also love to share support and ideas with anybody else here.
« Last Edit: April 09, 2014, 11:06:25 pm by rovingjack » Logged

Xenos
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« Reply #1 on: April 09, 2014, 11:16:58 pm »

I cannot lie, sir.  That's beautifully written, and it honestly brought a tear to my eye.  One move at a time, I like that very much.

My current goal is to keep my recurrent Malaria in check for at least two years straight, rather'n the yearly (nearly fatal) relapses that I suffer.  The move I'm making for that is augmenting my diet with whiskey (contains quinine), gin and tonic (contains quinine), and am currently looking into what it would take to grow and cultivate my own cinchona tree (the bark contains quinine).  That last one is a long term goal.

Today's move (already completed) was to start walking several days a week, try and get some good cardiovascular exercise in to strengthen my heart.

Now that I've walked nearly a mile, worked most of the day, and even cooked lunch for the wife and kid, I'm about to unwind with some Halo: Reach.

I'll try and check in on here from time to time, mostly to keep tabs on YOU, sir, but also to keep the interested parties abreast of my situation with the Reaper.
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« Reply #2 on: April 10, 2014, 12:56:52 am »

My situation is not life threatening as such, but anything can happen under an anaesthetic. I shall check in & keep an eye on folks.

Shall it be the Sicilian, or Four Knights? Whatever the gambit, losing isn't an option - worst case, a draw, where one still lives, albeit perhaps not in the best circumstances.

Offer Death a good curry, and avoid the scythe, gentlebeings.
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Clym Angus
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« Reply #3 on: April 10, 2014, 05:20:13 pm »

I like the game but dislike the odds. That skeletal git only has to win once and all bets are off.
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Sir Henry
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« Reply #4 on: April 10, 2014, 11:13:27 pm »

I've never been that good at chess, so it seems fitting that I'm still shuffling pawns around to test my opponent. My lung cancer was found by accident during a scan for blood clots, so despite it being all over one lung and mysteronising around my body I still have no symptoms from it. The chemo treatments however are playing havoc with various parts of my body, particularly the veins of my left arm which now feels permanently badly bruised.
But tomorrow I get my first post-chemo scan and hopefully on Monday I'll get the results, so will know then if it's working. If it is I move on to radiotherapy, if not then a more aggressive course of chemo. I know which I'm rooting for. But either way I can only see things getting worse before they get any better.

There is also a rather mind-boggling therapy that my son came across when studying Colour Science. They've developed a dye that locks on to cancer cells and added to it a photosensitive oxidizer. So you take the dye, wait in a room away from sunlight (and certain other frequencies) for 24 hours, then they shine a bright light of a certain frequency on you and the oxidizers are triggered, destroying all the cancer cells from the inside. It's still very much in development, but I've asked if I can be in the next trials, so fingers crossed...
Internal paintballing  Roll Eyes

I'm planning on discussing the ups and downs of our conditions with everyone in this thread for years to come, so I hope you're all sitting/able to sit comfortably.
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rovingjack
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« Reply #5 on: April 12, 2014, 07:51:04 am »

I've some busy days lately. And honestly I think some posative outcomes but I'm so wrung out from it all I'm not sure if it's just denial phase.

I had some really good signs during the prep-phase for my procedure. Signs that at least my crohn's was being nice with me. But That never happens and so I wonder if something else is going on. Is this a new twist in the course?

(I've written this post and deleted it a few times here because I'm spewing panicked questions as they occur to me, because that's mostly all I've got right now.)

A lot of unknowns and standing in the middle of a mine field. I've decided to just get back to my plan here. So things to do to improve the situation and prolong the course (and sir henry if you prefer you could play golf with death. I believe the actually myth is challenging him to a game, some play cards, some chess and Bill and Ted played twister and Battleship).

I had an endoscopy and colonoscopy today. It shows that at the very least my dietary approach has not damaged me any and has prevented progression of the crohn's to a more aggressive state. We wait for biopsies to see what those results say but it's entirely possible that so long as I tread safely on this path I can keep it in check. That's just the Crohn's. The tests did show a hiatal hernia, and some diverticula. At most these are minor and common situations to simply watch out for. At least half the population gets these at some points in their lives.

I held my ground with the allergist, and got an agreement to blood test five foods to check to see if I have to find alternatives for them. I'm definately testing eggs because it's a protein that's in many medicines and as something that can become an allergen for those who have reacted to poultry I should know that right away. Then I need to check the most nutrient dense veggies for any sensativities to secure nutrient lines for whole groups of foods. Then maybe see if it's all poultry or just the one kind. I can opt for other meats but I'd like to know how much I have to watch out for.

I've found some possibilities for honey alternatives, it just comes down to trying them with my digestive system. I might do a honey challenge to to see if it is an issue. I think I'll do it right before a doctors visit. They might be able to restrict my allergy testing to a few choices but if I'm allergically reacting to something in a visit with them where we won't be doing any testing they will have to respond to that by taking things a bit more seriously. I mean what are my options. Either they test things or I do. And since they don't want to I'll do it where the odds are best at getting rapid medical response.

After that I need to consult with the follow up to todays procedure, and close to around the same time I should be getting results back for Biome testing. So Then I should have some data to work with in planning.

That all gives me a plan to follow in hopefully results in a stable holding pattern.

As to things to get my affairs in order: I'm making a list of the things most important to me and the people most likely to value them. I've also collected some boxes and my plan isthat everything not on a shelf goes in a box, then I'll get a local person I know to be the one whose job it is to take those boxes to donate if I end up in a situation wher I am unable to do it myself. Forcing myself to choose the most impostant things and find a place for them and eliminate clutter.

But also I've started something else a bit morbid fun. I'm writing my own Obit. I saw an article about a guy who did just that and how his family said it was so exactly him to do and say those things. You could tell it meant a lot to them to have that. The fact that he started off with the Monty Python skit about "'He's Dead!..." took some of the sting out for those he left behind. So I thought about this and I realized it's a terrific idea to let them know how I want to be remembered, make them laugh a bit and let them not worry about how to do these things themselves but instead just focus on comeing to their own peace with it because I'll have done this part of the job for them.
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Sir Henry
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« Reply #6 on: April 12, 2014, 02:14:48 pm »

But also I've started something else a bit morbid fun. I'm writing my own Obit. I saw an article about a guy who did just that and how his family said it was so exactly him to do and say those things. You could tell it meant a lot to them to have that. The fact that he started off with the Monty Python skit about "'He's Dead!..." took some of the sting out for those he left behind. So I thought about this and I realized it's a terrific idea to let them know how I want to be remembered, make them laugh a bit and let them not worry about how to do these things themselves but instead just focus on comeing to their own peace with it because I'll have done this part of the job for them.
An excellent idea, Jack. I've started work on something similar - having hosted an internet radio show for a few years, I'm putting together a Wake Show for them to play when I pop my clogs. As the station is associated with a comedy forum, the plan is for it to start off maudlin and sad, but becoming increasingly light-hearted/sick comedy as it goes on so as to leave them with a smile rather than a tear.

Meanwhile I've been putting together podcasts that have been played on the station, about how the game's going so far. In order to keep my spirits up I decided to focus on the comical and absurd events that have taken place. And when you start looking for them, it's surprising how many there are. And how effective looking on the bright and bananas side can be.
If anyone's interested, they are here:
1 (NSFW Prequel) - Lymphoma? : http://rapidshare.com/share/53E09C488ADB439422B1140FAFC878DC
2 - Diagnosis : http://rapidshare.com/share/B42BB75816D260D312980CF17FCC10C9
3b - The World's Worst Pencil : http://rapidshare.com/share/42F4018A67C61CBD7C098033B4FB5AFC
4 - Sir Henry on Drugs : http://rapidshare.com/share/255761978F8746FF5D08B53060C720C2
5 - You'd Better Believe It : http://rapidshare.com/share/FA7D69D96DAC743C353B73D80ADFDD91
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rovingjack
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« Reply #7 on: April 13, 2014, 04:34:31 am »


Meanwhile I've been putting together podcasts that have been played on the station, about how the game's going so far. In order to keep my spirits up I decided to focus on the comical and absurd events that have taken place. And when you start looking for them, it's surprising how many there are. And how effective looking on the bright and bananas side can be.
If anyone's interested, they are here:
1 (NSFW Prequel) - Lymphoma? : http://rapidshare.com/share/53E09C488ADB439422B1140FAFC878DC
2 - Diagnosis : http://rapidshare.com/share/B42BB75816D260D312980CF17FCC10C9
3b - The World's Worst Pencil : http://rapidshare.com/share/42F4018A67C61CBD7C098033B4FB5AFC
4 - Sir Henry on Drugs : http://rapidshare.com/share/255761978F8746FF5D08B53060C720C2
5 - You'd Better Believe It : http://rapidshare.com/share/FA7D69D96DAC743C353B73D80ADFDD91


I've been thinking of doing something similar. I went through the process of setting up some things on my computer to help me compile audio or video and now I think I will be scripting things a bit so I can try and say the things I'd wanna say before the day comes. I'm not sure I know enough about doing it all but I will experiment. I'm thinking more along the lines of TED talks. Ideas worth spreading because that's one of the things that worries me most is that all the ideas I had worth anything will disappear with me.

But also today I've been looking through a few other things like what type of funeral to have set up, and the types of burials (or not). A part of me always felt like cryopreservation was what I'd do if I could, but I have serious doubts that any of the organizations doing so these days are anything but unsustainable weird burrial practices, that will just become an inconnveniant problem when they fail and we all start thawing. I looked into plastination. and a few others ( http://mentalfloss.com/article/51905/10-amazing-things-your-ashes-can-do-after-you-die ).

It seems the company that can make a diamond from part of you could take hair samples to do that, so if you do lose hair from the chemo...

It's not cheap though. Sir Henry you might look at the one that can have some of your ashes pressed into a vinyl record, considering your podcast seems to show you as a appreciator of music. Or you might even record yourself telling some of your favorite stories and giving loved ones special messages, or just telling them advice and how much they mean to you, and see if you can get those put on records and they IF the day comes have your ashes pressed into them. Naturally they could be used as the masters for making molds to press copies from if they wouldn't want to wear them out from the playing.

So I'm thinking now that I  might get my head frozen or plasticized (some suspect that is the better option), and my body ashes used for planting a tree. http://bigthink.com/design-for-good/this-awesome-urn-will-turn-you-into-a-tree-after-you-die. Or making a piece of artwork.

(I got up to chat with one of the guys I share this house with, when he came home. Then I ended up cooking food for myself while thinking about this topic)

This has given me a brilliant Idea and if I'm given enough time on this earth I may just expand on this to see if I can make this into a service to offer people: I wonder if the ashes of a person or pet could be included in the castings of metal. I'm thinking of things like pewter statues of pets... or the big one that I think I would love to have done to me but don't think I'd have anybody to give 'myself' to afterwards. A set of tools.

Simple tools for tinkering and home repair, that sort of thing. I think the type of pot metal that might result from ash filled or sinterred metal dust mixed with ash, wouldn't be super strong or high grade working tools but to have a nice tool box full of tools you could use on simple projects or even make a display of them in a workshop. Man I would love that. To be made into something useful and that enables others to create something with me.

There's another loose collections of ideas that I think is a particularly fitting idea for this forum. The idea of taking metal cast and sinterring metal with ash in them and casting them into parts for Mechanisms, Lamps, clocks, or maybe even something like a scale steam train or something similar. Okay I also admit that the idea of steampunk brass garden gnomes sounds just awesome too.

There are some interesting ideas here and I may have to look into doing some of these if I get some good news in the future about how much time I have left.
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George Salt
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« Reply #8 on: April 13, 2014, 12:40:06 pm »

I don't envy you all those investigations and procedures, a few weeks ago I had an endoscopy to confirm Coeliac after a positive blood result and whilst I opted for sedation I was aware of discomfort and the sore throat afterwards isn't pleasant.  Between the investigations/monitoring for Coeliac/Grave's (I have both) I'm beginning to feel like a pin-cushion after going a lifetime without a blood test until last August.

When you mention a possible allergy to honey, have you considered that honey isn't a consistent product?  Honey varies from locality to locality and throughout the season based on the availability of different pollens.  Even if you demonstrated an allergy to one honey, that wouldn't necessarily indicate an allergy to all honeys if it was a location/season dependent component of the honey that was the problem.  There are some published studies on using honey to alleviate hay fever that may provide useful data.
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rovingjack
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« Reply #9 on: April 14, 2014, 01:21:30 am »

I don't envy you all those investigations and procedures, a few weeks ago I had an endoscopy to confirm Coeliac after a positive blood result and whilst I opted for sedation I was aware of discomfort and the sore throat afterwards isn't pleasant.  Between the investigations/monitoring for Coeliac/Grave's (I have both) I'm beginning to feel like a pin-cushion after going a lifetime without a blood test until last August.

When you mention a possible allergy to honey, have you considered that honey isn't a consistent product?  Honey varies from locality to locality and throughout the season based on the availability of different pollens.  Even if you demonstrated an allergy to one honey, that wouldn't necessarily indicate an allergy to all honeys if it was a location/season dependent component of the honey that was the problem.  There are some published studies on using honey to alleviate hay fever that may provide useful data.
Yeah, predominantly honey is a glucose fructose mix with some 'ash' and touches of other sugars and a bit of acid from the bees, and behind that are traces of bacteria and fungi and pollen that remain in the honey. Fructose can become a digestive issue if consumed in large amounts, but glucose is pretty much in every cell of your body already and it's ready made fuel.

Corn syrup is usually either fairly pure glucose, or a glucose fructose mix, likely with a bit of the starches use to make them lingering in trace amounts. So those could be a viable replacement if it comes to it and they work, it can be a bit funny as to what does and doesn't work for my system. There is also Dextrose which is just another name for straight glucose powder. That too will be a trial and see sort of thing as an alternative.

But more pressing in my mind is the rapid accumulation of allergies to foods. Because it doesn't matter in the least if I can get glucose by the pound if I develop an allergy to all the dietary sources of nutrients and fats my body needs to survive. Sensativity to glucose could even happen. which leaves really just the option of closing down the immune system all together and living in a bubble where everything is a dangerous risk but you may no longer react to foods.

Plus none of that addresses the risks of some of my digestive tracts compromised sections being a danger of scarring heavily enough to close up and causing septic tears or bursts. I still have to wait of some of the data from the recent procedure to find out the data on that outlook and risk, and then discuss the options of potential for resectioning to eliminate the damaged territory. There is a limit to how much of that we can do before I develop a condition that leaves me with not enough to absorb the nutrients I need.

So it's a lot of unknowns, and at best a few stop gap techniques to hold me over. But I'm not saying a way out can't be found, I just don't have any dependable leads that we know yet. Once we do it will likely be trial and error, and take some adaptation and even then it may be a bit of time later that we find ourselves back at this place again. Only by then I hope they've made some progress toward a cure for one or more of my problems.

Just like in Sir Henrys case. My mum as a cancer survivor says there is a saying in the community, it's never if cancer comes back it's when. The goal is to figure out the best path to setting that when fourty years away. By then inoperable has become operable, treatments can have less dangerous side effects, and repair and reversal of damages done by cancer and treatment are more complete. That's always the goal, hold the pass so that eventually reinforcements can arrive to help you route the enemy for good. The prospects of a lot of treatments out there right now are looking very good for both Cancer and my ailments. We've just got to hold the pass until one or more of them get here.

On the front of things today, honestly it's just been a bit of a "Poor me" sort of day. I'm trying not to let it get to me. I'll try an prep for a doctors visit tomorrow, and discuss some of my thoughts and concerns. I think I may see about a talk with a psych too. Probably not as a long term course, but maybe just to have somebody to dump some of the load on rather than dragging it around with me or accidentally swinging it around enough to hurt those around me. It would free me up to do the things I need to do, either for tying up loose ends or for moving on to living life after I do that.

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Sir Henry
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« Reply #10 on: April 14, 2014, 05:54:55 pm »

Just got back from seeing the consultant and the first CT scan results since starting chemo. The results aren't official yet, but we had a look at the scan and it looks as if the lymph cells/nodes/cancery bits have been reduced to about 25% of their initial size.  Grin So the drugs are definitely working. The plan is to do another two rounds of chemo, have another scan and then, depending on the results, probably radiotherapy. Then, with any luck, it will be a case of managing the remaining cancer and not dying for a bit. Which will be nice.

Today has been a good day. If I could send some of it over to you, Jack, I would. Stay strong and chin up, sir.
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rovingjack
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« Reply #11 on: April 15, 2014, 04:34:17 am »

Just got back from seeing the consultant and the first CT scan results since starting chemo. The results aren't official yet, but we had a look at the scan and it looks as if the lymph cells/nodes/cancery bits have been reduced to about 25% of their initial size.  Grin So the drugs are definitely working. The plan is to do another two rounds of chemo, have another scan and then, depending on the results, probably radiotherapy. Then, with any luck, it will be a case of managing the remaining cancer and not dying for a bit. Which will be nice.

Today has been a good day. If I could send some of it over to you, Jack, I would. Stay strong and chin up, sir.

That is good news to hear. May the next course go twice as well. And whatever remains, if anything at all, hopefully you get into a trial of cancer therapies that are appreciably amazing enough to irradicate it completely. I'm sure everybody here would be glad to have you showing up to steampunk affairs for years to come, full of vim and vigor.

As for your sendings, they've been recieved with much appreciation, as I too have had a decent day. I've had a follow up with the docs, and while the most important bits remain to come back from testing it seems that current indications show that at least as far as crohn's goes, I am healthier than I was when diagnosed.

In addition it's been a few weeks and my weight dropped a little but has stabalized where I am. So I may be hungry more often but I'm not losing weight. I still have much of my nutrition too, just need to source a few alternatives. And at this rate maybe some alternatives for the alternatives, to give me leeway.

I'm also scheduled for more in depth allergy testing soon, and we wait for the results of my testing on my gut flora.

Hopefully the coming few days will turn out nicely too, as I will be trying some fattier meats for caloric and protein sources to replace the lost poultry.

I'm a bit superstitious right now so things might be going better than that But between my doubts and anxieties and my unwillingness to say anything until it's in writing and independently confirmed I'm remaining conservative in my expectations and evaluations of my current situation.

That's part of why I still intend to speak with a psych. The damned antibiotic left it's little nerve issue prize, which includes a bit of panic attacks, anxiety, depression, and hopefully not the occassional psychotic break that has happened to a few people. I might be sturdy enough to handle that based on past experiences if it weren't for the rest of this happening all at once. So enlisting some help may be in order for a bit.

But at any rate that was a fairly busy day. And then I prepped some food for the day and tomorrow too. Tonight we set out the trash so I'm in the precess of a bit of cleaning up. And to enjoy my day a bit I think I shall do a little model making. Nothing like escaping into a tiny world when the big one put up too many walls to me doing some of these tinkering projects on a full scale.

I also plan to do a bit of research into that whole ashes into metal idea, because I really do thing that as a service to pet owners it would be a viable business, and as a service to the dieing and their family I think it needs to exist. I know I am obssessed with the idea of that for me now. Even if Extra-terrestrials land in the next week with the cures for all my ills and life extention until we are 500 years old, when my time comes I think I would very much like to be a clock, a reading lamp, or a toolset for somebody in the family. To be useful, and participate in some aspect of their lives, and if possable enable some part of the creative process.
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« Reply #12 on: April 18, 2014, 04:33:57 am »

I'd like to think things were looking up for me on the marker day, and in some areas they are a bit. I've had a break from crohn's symptoms for about a week now. It's been encouraging. My scoping came back looking really good.

But today I weighed myself and I'm below 160lbs again. 2 more lbs and I'll be back into territory I've not been in since 7 years ago when we didn't know what was going on and the doctors left me on my own for months losing weight rapidly and no idea what to do. over the next few months after that I lost 20 more lbs and even when I found foods that worked for me it took 4 more months to slow the loss and I remember how much it ached to be so thin. another six months to climb my way back up.

I need info from my doctors, NOW! I need options. I can do this, I'm sure, but this is going to be hard. six months of exhaustion and wasting away may see me at horrible levels I've never been to before, and it will hurt.

That's the thing on my mind today. How needlessly cruel this seems. I don't imagine there to be any greater beings out there with an intent to inflict this on me, but just the idea that life can do this to people and we still want more of life. It's sort of sick.

Hopefully my day tomorrow will improve my outlook. and for the holiday with family I'm going up a day early in spend a night in my home town and with my mother. It'll be uncomfortable but I'm thinking I should have a serious talk with her about what to do when the fight turns against me.
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« Reply #13 on: April 18, 2014, 08:11:46 pm »

My Good sirs, my prayers are with you all.
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« Reply #14 on: April 19, 2014, 01:18:39 am »

Having a rough day. I'm just so tired of the fight every day. I want to get up and just do something creative and not have to worry for anything right now. That and I wish there was somebody here I could just hold onto. I need a little bit of a world where there are no outsides trying for my attention and needing maintanence. I'd like very much to get out of bed when I wake and wrap myself in a blanket get down on the floor with a box of legos or some of my tinkering projects and just lose myself in it all day. Then sometimes hold on to somebody, just wrap my arms around someone so I can know that we are both here, that I'm not alone, and just as important that I exist for somebody else.

I'm now fairly convinced that between the antibiotic they gave me mucking up my brain chemistry and causing slight nerve damage, and the stress of it all going wrong this year, I'm in an emotional space I've not been in a long time and I'm in deeper than I ever was before.

Once I get a few of the needed things taken care of, and maybe set up a psych visit to help me work through some of that, I think I'm just going to do that. I'm going to hole up and get up in the morning when I can't sleep anymore, and just lose myself in something that is enjoyable and in a way more deeply me than the turmoil I've been dealing with lately. And maybe somewhere along the way I will find somebody who I can hold onto when I need it.

that sounds so nice right now. I'll hold onto that for a bit to help me through the thick spots.
« Last Edit: April 19, 2014, 02:28:42 am by rovingjack » Logged
rovingjack
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« Reply #15 on: April 19, 2014, 10:36:42 am »

I think I actually managed to ease the stress tonight. It all comes down to looking at things as not being dreams not realized, as that happens often enough during life, but having had the chance to be dreamed and having the experiences to draw inspiration from in order to dream.

Take that idea and use Einstiens quote of "Imagination is more important than knowledge. For knowledge is limited to all we now know and understand, while imagination embraces the entire world, and all there ever will be to know and understand." and I dare say things also that won't come to pass.

There is a certain contentment to be had from moving from the idea of dreams not as lost opportunities that might have happened some day, and see them as gifts received in the course of life that add value to life, and are still full of potential. It eases some of the pain that I feel when faced with the uncertaincy of how much time I may have. and less stress and pain to battle allows me to apply that energy to actually fighting the fights that matter.
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Xenos
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« Reply #16 on: April 25, 2014, 05:33:34 am »

Going into a fullblown relapse of Malaria right now.  Fever is 102 even.  Shaking like a leaf.  Hurting like hell.  To top it all off, my urologist accused me of being a junkie.

I've been clean for 9 years, one month, 29 days, 18 hours and change.

This makes Relapse #4 in a calendar year.

I've never had that many in a 365 day period, let alone since October of last year.

And if that's not bad enough, the last time I had Malaria on April 25 (my birthday), I was pronounced dead for 15 whole minutes.

I may be running out of moves here.
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Sir Henry
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« Reply #17 on: April 25, 2014, 09:37:53 am »

Best birthday wishes.

And many, MANY happy returns. For years to come.
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rovingjack
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« Reply #18 on: April 25, 2014, 08:48:23 pm »

Xenos you can do this.

Hang in there. Every day it looks like they crack more and more of the disease to the point where it looks like it will be solvable in your lifetime.

also in relation to this topic, while I wait on results from the latest round of testing, I actually have achieved an amazing amount of satisfaction and self reassurance by figuring out how I want my obit, funeral, reception after the funeral, and remains handled. Just the idea that that much isn't a big jumbled mess of unknown for my loved ones and that I could leave them something good to remember and take much of not all the burden of handling it from them. But also there is the appeal of making a good story, and using it to make a difference in everybodies lives when it happens.

Between that and reframing things from the perspective of 'losing opportunities to experience things I only got the chance to imagine' to 'Having had the chance to dream and see the potential of things'; it's changed my view from one of denied chances to privilaged opportunity. It's a good change for going forward with my life, however long I manage to make it last.

and finally I found this link earlier today: https://www.everplans.com/ that can help with making plans for how to handle it all.

Best of luck to each of us. Hopefully I will be back on the next milestone with some good news. It's been... confusing lately. Hard to describe it as anything else until we tie up some of the data.
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Xenos
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« Reply #19 on: April 27, 2014, 06:22:21 am »

Just wanted to let you guys know I'm pulling for ya.  I know I've said it already, but it bears repeating.  Or is that bares?  I can't remember.  I'm medicated.

Rovingjack, you got this.  I know you do.  You'll be alright.  Sir Henry, I hope you can get into that test thingy with the light whatsits.

Remember, if all else fails, castle. Wink
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Sir Henry
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« Reply #20 on: April 27, 2014, 10:20:11 am »

Remember, if all else fails, castle. Wink
I told you I wasn't very good at chess - I've spent most of this week trumping (though that's probably due to the latest medication  Grin ).

I'm not sure if anyone is interested in the podcast things I've been doing, but the latest one is rather more upbeat at last.
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frances
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« Reply #21 on: April 27, 2014, 10:51:02 pm »

(I got a rapidshare website asking me to download something)
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« Reply #22 on: April 27, 2014, 10:58:48 pm »

(I got a rapidshare website asking me to download something)

I hope your ready ...

Sir Henry is awaiting your account details , and is need of your charity and support to help with his addiction to pennies  Grin

« Last Edit: April 28, 2014, 12:00:49 am by 4_0_4 » Logged

" You can lose every battle except that last " Sir Malcolm , Penny Dreadful
Sir Henry
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« Reply #23 on: April 27, 2014, 11:54:57 pm »

My apologies for rapidshare's uncouth behaviour; it has never been the most co-operative site. Unfortunately, being a member, I don't see what non-members see there, so can't advise on how to download from it. I shall put it elsewhere, where it can be more easily accessed.
But thank you for trying.
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rovingjack
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« Reply #24 on: April 28, 2014, 02:50:31 am »

It took a bit to figure out the first time for me. but I just go 'to download' and it takes me to a playlist with one file. hover over the file and on the far right will be the download arrow. click it. once it's done downloading it may try playing it automatically or you may go to your down;oad folder and right click it open with an application of your choice.

Congrats on being committed by the way, lol.

In the mean time I'm being as superstitious as possible until I get the last of the test results in the next few days (alright the second to last. still waiting on the biome testing to figure out if there is a gut flora issue and ways we might rebalance that but that's less 'serious' than the other testing). Oh and going to get the titches taken out in the next day or two. I think it shall be nice to go for a bit without a medical test I need to take part in. Though I may still talk to a psych to help me readjust to my situation and to reinforce me against any more suprises that might come to upset the apple cart.
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