OT August Chit Chat

[Howie]

I don't play games, sorry. Unless we play Doctor.

[agate]

We're already playing doctor here, aren't we? Oh no, that's exactly not what we're doing, come to think of it. We're always telling people we're not doctors.

But if others were doing a game here, you just might change your mind.

[Pegakafarmgirl]

Usually the first infusion of the cycle takes longer because they run it slowly and keep ramping up the speed if all is going well. The next infusion two weeks later is usually faster. Peg, mine takes about 6 hours the first time and maybe 5 for the second infusion. How does that compare with your time?

had this done in 6 hours,,was so nice to have it done with my hospital,, 1st infusion was 5 hours,, second one was 4 1/ 2 ,, I guess it is different each time,, next one is Feb 6th

[Cherie]

Agate,
Sorry...not interested in the game.

Peg,
It seems my infusions are shorter each time because we now know my tolerance and the staff knows me. So glad you don't have the drive to add on.

I am not looking forward to all of the driving and time spent each month for more than a year an a half for David to be in this Clinical trial. The coordinator said I would only be needed every 4th or 5th visit to fill out forms and updates but the website for professionals involved in the trial noted that a "caregiver who is with the patient at least 12 hours a week must accompany to every visit and infusion. The coordinator did not know that there are cardiac symptoms in 1% of the participants which is why there is a two hour observation after infusion (including placebo arm). He did not know that vitiligo (loss of pigmentation from an inflammatory event) disqualified potential participants and David has white spots all over both arms for 20 years now since a bad sunburn while in the caribbean. Don't know if that counts. He called David to set up a 4 hour screening appointment where I needed to be present a week and a half ago. It was in his saved voice mail because he did not know what to do with the call and forgot about it till his VM was full and we were driving to NH and playing back calls. So now, his first screening visit which could have been day after tomorrow has to wait till August 29th which is the last possible screening appointment to get into the trial because he did not call back. I think it would greatly disturb him if he knew I was sharing this with all of you but it feels like a safe place where there is little or no intersection with him on FB.

[Catdancer]

Virginia, if you search on Amazon for jigsaw puzzle mat, youll.see what I mean -- essentially a piece of heavy felt, attached to a cardboard tube.....like paper towels. Only you roll out the felt, work on the puzzle on the felt, then roll it up around the tube when you need the table for something else. The pieces sort of settle into the felt as it's rolled up, but when unrolled, the felt will fluff back up. They will.remain in place....assuming you're careful.with the rolling or moving it around.

[agate]

Agate, I don't think I want to do an all white jigsaw puzzle - or black. Thanks for reminding me that I can get one on line. (how could I forget) What kind of roll up thing were you and Cat talking about. I always left mine out on a table while I was working on it, but now I don't have a place that I want to tie up that long.

Sunshine, start with a day and then start trying for a week. So glad you had that day free of pain.

Virginia, I didn't seriously think you--or anyone--would want to do an entirely white puzzle. I was just amazed that one was even being offered for sale!

Some jigsaws are impossibly difficult.

Years ago when my brothers were still alive, one of them and my SIL used to come from California to visit in WA every few years or so, just for a few days, and what we did most of the time was jigsaws. My brother had had a stroke and was paralyzed on one side but he was still able to put pieces into the puzzle.

We gave up on only one puzzle. It was a picture of a bunch of chocolates, and the reverse side was the same picture, rotated 90 degrees. We decided that the best way to do it would have been to put it on a piece of glass or some other transparent surface so we could see both sides at once. It was a fiendish puzzle.

[nuthatch]

Agate - I'm game to play a game! Sounds fun!

[agate]

Thanks, Joan! Which one would you like to try? There are 5 of them. We could try one and see how it goes.

My thought was to add a bit of variety to the board. Anyone remember when Joker and Hardy Har Har used to post daily jokes here? Actually I hardly ever read them because the board was so busy back then that I could hardly keep up with the other posts but they were something different, lightening up the place a bit.

I googled "word games for message boards" and found the list.

[Howie]

The all white puzzle would be a real challenge. All you have is the shape of each piece, and no picture to give you a clue as to where it goes. Agate wants to do that one, she's just being difficult.

[Lazarus]

had this done in 6 hours,,was so nice to have it done with my hospital,, 1st infusion was 5 hours,, second one was 4 1/ 2 ,, I guess it is different each time,, next one is Feb 6th

I do my infusions at a center that is 15 minutes from my home and a very easy drive. After all the years I have been doing one chemo or another the nurses all know me and I have seen pictures of their children from infancy to well into their 20’s!

[Catdancer]

Thanks, Joan! Which one would you like to try? There are 5 of them. We could try one and see how it goes.

My thought was to add a bit of variety to the board. Anyone remember when Joker and Hardy Har Har used to post daily jokes here? Actually I hardly ever read them because the board was so busy back then that I could hardly keep up with the other posts but they were something different, lightening up the place a bit.

I googled "word games for message boards" and found the list.

I love word games. Start a new OT thread .... The pantry game sounds like fun. The only one I couldn't wrap.my head around is the go fish one, but I'd play any of the others.

[Catdancer]

Oh...And the movie game. I don't see enough movies to be able to participate in that one..

[Catdancer]

Another fun word game I've seen on another board: someone posts a word. It could be anything. Like "cat". The next person to post has to post a word that relates: here it could go in a lot of directions -- types of cats, wild cats, famous cats.....or "dogs", or "pets" .....which lead to other words, and so on. The thread I see on another board is now over 3,000 words long, going on for years.

[Sunshine]

Cherie, that’s very very frustrating.
Is it first come first served, or do they take any number of qualifying patients?

Since the doc dropped the ball, can he call the study and tell them to consider D avid like a patient who was screened in early August? Or, is it not first come first served?

The whole process sounds very difficult. It would seem easy if you knew he got the real stuff...I don’t see the value of placebo here. Why not just compare it to a matched group whose only use is of Aricept, or to untreated dementia....

[Sunshine]

Sure, on the games thread agate. If it’s not wanted, it would be clear within a few weeks!