03.29.07
Posted in Health at 12:27 pm by emerym
Tuesday I felt like I’d been punched in the shoulders. Yesterday wasn’t too bad and this mornings been going reasonably well. I’ve spent the morning typing this post and talking to Karin at the office. I feel tired and cold, but only have a mild feeling of fatigue, nothing as bad as Tuesday. 11:50: My wife gives me a bit of a reality check. She’s just got a thin top on and says she’s feeling warm. I’ve got a T-Shirt and two sweat tops on and feel like DC Comics Mister Freeze.
Yesterdays Bone Scan
As per yesterdays post I went back for the actual scan after lunch. It should have been at 14:00, but was late. Surprise! Going through the images with Doctor Al-Janabi, he read about the D9 vertebra in my notes and said the planar scan doesn’t show the D9 in detail as it’s masked by the sternum. A 3D scan would be needed, did I want to wait and have one to be sure? As that’s the reason I was there I joined the end of the list and waited until 17:10 for one more scan. Thanks to Mum and Dad for coming to the rescue and picking Sophie up from the schools late club!
A 2D scan does make cancer sites show up, even in small images. Here’s an example, check the knees. (NOT my scans).
From my 2D scans he was quite sure I didn’t have any problem sites, which was great news, considering that everyone else in the waiting room that day didn’t have such good news. Again I’m a lucky statistic. I’ll post one of my images when I can get hold of them. He showed my wife and I the D9 in the 2D slices from the 3D scan and said he could see nothing wrong. So what had the CT scan picked up?
So I’ve got an all clear from the images he reviewed. Due to a problem with one of their systems they wont be able to do the full report and send Mr Khawaja the data until the end of the week. Hopefully the answer won’t change when the other system comes online and lets him review the data in other ways.
Quack medicine?
My wife came back from her B.N.I. meeting this morning with a 1 Ltr bottle of Aloe Vera Gel by Forever Living (£18!) One of the ladies there sells a lot of health products, she says I should have 60ml each morning. It tastes disgusting, I’d rather stick to my Pineapple. I’m also a bit miffed that I wasn’t asked if I wanted it, £18 would have bought a lot more pineapple juice.
Coming to London
I’m seeing Prof David Linch at UCL on Tuesday 3rd. His special interests are normally Leukaemia and lymphoma, although he’s interested in my Kikuchi-Fujimoto disease. If I still feel okay after that I’ll be popping into the office to see the Wellness team, and hopefully say hello to a few people on the 3rd floor* 
* NOTE: As long as you’ve not got colds! Please take this bit seriously, my immune system isn’t 100%, it’s the reason I’ve got a mid day appointment to avoid the peak time commutes.
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03.28.07
Posted in Health at 11:51 am by emerym
I’ve had my injection. They didn’t use the Geiger counter they had in the room on me, just as well as it might have freaked me out! The dose is supposed to be the equivalent of around 200 X-Rays.
I’ve got to keep a distance from my daughter for the next 24 hours, so no lying on my bed watching telly or reading to each other tonight. 
The nurse prepared the syringe with a lead shield between him and the solutions. I thought the syringe was rather stubby and fat. When he administered the injection I got a much better look, it was in fact tiny, just sitting in a “Full View Lead Glass Syringe Shield”.
I’m due back at 14:00. With luck I’ll be out by 15:15, if everything goes to plan. That said they were 30 minutes late in giving me the injection, so I won’t count on it.
I was expecting the scan to be just for my back. I shouldn’t be surprised any more with these scans. The nurse checked the sheets, I’m in for a head to toe full body scan. I joked with the wife, saying I should strip off and have her take photos of me in the garden, just to readdress the inner / outer image count a bit.
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Posted in Health at 7:30 am by emerym
One side effect of the KFD is that I get tired at odd times of the day. Quite often to the point where I have to go back sleep, be it 11AM or 2PM. This has messed up my normal night-time sleep pattern somewhat.
This morning I found myself awake at 6 AM, with the last verse of the following going through my head.
Marks KFD Poem
I’d like my normal life,
The one I had before,
With my daughter and my wife,
When life wasn’t such a chore.
I want to call on a friend,
But worry I’d catch their cold,
When will this ever end,
Non linear recovery foretold.
I’m fed up of being tired,
Please take the fatigue away.
And give me back the buzz
I had that Saturday.
I’m off for my Bone Scan now.
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03.25.07
Posted in Health at 9:57 pm by emerym
I’ve got a date for my bone scan. Wednesday 28th. I’ve been told that the scan itself will be between 3 and 6 hours after the injection! I was going to insert the “Fire & Burn” comment on time, but found this one from my favorite author Douglas Adams on Wikipedia. Fits the bill just fine
“How can I tell that the past isn’t a fiction designed to account for the discrepancy between my immediate physical sensations and my state of mind?”
Health wise things are the same, I’m mostly worn out with intermittent moments of feeling good. I slept until 9:30 this morning, then slept for another 3 hours this afternoon. I’m off to bed again now, night all.
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Posted in WM PDA Phone at 9:21 pm by emerym
rlToday’s been updated to 0.1.21. It can now read Registry keys to create cool views like this one by forum member Zeon:
TimeRule and PocketClock from megasoft.com look quite good, I’ve just started looking at them today. TimeRule gives you a count up/down entry on the Today page. E.g “Flight takes off in.. 2h 00″. PocketClock is a world clock, timer, stopwatch, etc. Both are shareware.
If you’ve got a HTC TyTN and want to play Doom in landscape mode with the keyboard look here. [Update] If you want to frag a few more monsters then this site has a working Quake I.
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03.21.07
Posted in Music at 8:41 am by emerym
When listening to my music on my PDA phone one thing that kept annoying me was the different volume levels between tracks from old and new albums. On the newer albums the sound engineers generally push the volume to the limit. This can make for uncomfortable listening when you’ve adjusted the volume for an older, quieter track moments before.
The answer was Replay Gain, WinAmp, and a DSP plugin for my player.
WinAMP lets you right click on a track and select “Send To: / Calculate Replay Gain”. It then stores the gain in the file and adds tags with the data.
Note: Before you do this yourself with WinAMP 5.33 and Ogg Vorbis files, ensure you have a backup. A few people have had this version zap their files when writing the new tags. So far it’s zapped 1 in 44 tracks for me. 5.34 is in Beta at the moment. I don’t think mp3 files have the same problem.
I use Conduits Technologies, Inc. http://www.conduits.com/ Pocket Player on my WM5 HTC TyYN. The DSP plug-in reads the Replay Gain headers and adjusts the tracks volume when decoding.
No more reaching for the external volume control!
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03.17.07
Posted in Cars, Health at 11:11 pm by emerym
Today sure had it’s ups and downs.
My mate James popped over just after lunch with some more films for me to watch. He’s a top bloke, you’d be hard pushed to find someone nicer. We sat in the kitchen chatting for a while, talking about how things were at work and life in general. I love my family, but having a chat with James was a refreshing change.
He’d driven over in a car he borrowed from his flat mate as his motorbike was out of action. It’s a nice motor, even if James had to fold himself up like a piece of origami to get in it I’d love to do some studio shots of it when I’m better.
Since Friday I’ve had an odd cold feeling in my lower back. After James left, my wife called out from the office saying that she had a letter for me. It was from Mr Khawaja. I don’t know how long it took to sign and post, but it was dated the 9th. On opening it I thought it was just a CC of a letter to the office. Then I noticed the extra letter at the back.
“.. the CT scan has revealed an ill defined lytic lesion in the body of D9 vertebrae. On balance, I believe you should have a bone scan to rule out a significant pathology there. ..”
Where is the D9? The only diagrams I can find show the C/T/L or C/T/L/S/C vertebrae. My sister says it may be a typo, S and D are next to each other on a QWERTY keyboard. But the sacrum only has 5 fused bones, not 9 or more. Other simpler diagrams class the sacrum and coccyx together as a fourth group, which would make D9 the very end of my coccyx, as it has 4 fused bones. [Update: The D9 is around the 'middle' of the back, between hips and shoulders.]
I’ll let you do your own Google searches on “lytic lesion”, but the first entry we got back was “lytic lesion: Destruction of an area of bone due to a disease process, such as cancer.” Having had a radiography report questioning Lymphoma, I could do without this right now. Better get the tests done ASAP and rule it out.
My parents came over for an early Mothers Day dinner at the new Don Giovanni Brasseria (BR2 9LB), just around the corner from our house. We had a great meal, it’s well worth a visit if you’re in the area. I’d only asked for a glass of white wine, but the waiter left the bottle. I ended up drinking most of the bottle on my own. It did more to releave the fatigue than all the Ibuprofen and Paracetamol I’ve been taking these past weeks.
So now I’ve got a bone scan, better known as a radionuclide scan, to look forward to. That will bring my set of scan types up to three. At least it shouldn’t be as bad as the CT scan.
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03.15.07
Posted in Music at 2:19 pm by emerym
I’ve been listening to a lot of music while off sick. The family CD collection would take 21×24x7 to listen to in full. Playing around with WinAmp I realised I could use its media library to rate tracks and start building a play list. Initially it was just to skip some downbeat tracks I didn’t want to listen to. “Dirge Music” as my friend Jason would put it.
After the news that I didn’t have lymphoma I started thinking about having a party in October. It will be my 42nd “Meaning of Life” party. Maybe even fancy dress as I know some people have got some costumes they’re just dying to show off 
I’ve been slowly working through my CD collection, picking out the more upbeat tracks. I’ve just stopped at the T’s. The The, Infected is an album that reflects Britain around 1986. None of the tracks made my party list, but the album name and opening lines of the title track brought a wry smile to my face, with Matt Johnson’s great lyrics and vocals.
I’ve got too much energy to switch off my mind
But not enough to get myself organized
My heart is heavy–my head is confused
And my aching little soul–has started burning blue!
A couple of Artists later in the list we have Twenty 4 Seven and their track “You can make me feel good“. Their backup singer Nance Coolen was the best part of the band, but I prefer brunettes these days
As my play list would run for 15 hours already, without anything from U to Z, I’ll have to do one or more of the following:
- Have tracks play at random from the list
- Put the list on the web and let some of my buddies rate the tracks
- Make the party last much longer! Long weekend anyone? 12th-14th October 2007
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03.12.07
Posted in Health at 12:27 pm by emerym
When I first read “spontaneous healing” I misunderstood its meaning. Looking up spontaneous in WordNet I get: spontaneous, self-generated — (happening or arising without apparent external cause; “spontaneous laughter”; “spontaneous combustion”). The doctors are using the term to mean “self cured, without drugs“.
Positive signs
On Saturday I woke up buzzing with energy. I could hardly contain my excitement when telling me wife and daughter. I felt like bouncing off the walls, singing at the top of my voice. I’d not felt that alive in the morning for a very, very, very long time. I’m talking about years not months. I managed to get through the day without the need to return to bed. At half seven I was still very much with it mentally and cooked dinner for the family. I then sat at the dining room table playing Jenga with my daughter until late evening.
Sunday wasn’t anywhere near as good. I woke around eight and did a bit of paper filing while sat in my wifes office. Just three and a half hours later I couldn’t stay awake and had to return to bed, although I only slept for a couple of hours. My sister said this sort of thing is normal, I should expect the good periods to become more frequent and longer over time, but not follow a pattern. As my GP put it, “It won’t be a linear recovery.”
When the Kikuchi’s gone, if I wake up each morning feeling as good as I did on Saturday, I’ll be a very happy man indeed!
The fact that Saturday was so exceptional does make me wonder just how long I’ve had Kikuchi-Fujimoto. I’ve had the Flu a number of times in my adult life, could one of those earlier times have really been the disease? Could I have been suffering with it for ages, unknowingly never giving my body the chance to recover from it fully until the point it got a major hold? It would certainly explain the long term fatigue I’ve been suffering from.
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03.10.07
Posted in Interactive Fiction at 7:38 pm by emerym
Having watched a number of films and listened to hours of music, I needed something else to do that I could pick up for short periods. Not feeling up to visiting a book shop I started looking for eBooks and stumbled upon two other things worth the download.
The first was WordNetCE for the Pocket PC, WordNet for Windows.
The second was Interactive Fiction, “IF”.
Roughly 25 years ago I played the first of the Zork series on my Tandy TRS-80. I hate to think how many hours I spent as a kid solving that game. There is a great IF editor called Inform that lets people create their own IF, with versions for both the Mac and Windows. It supports creating stories in a number of formats, so your game can be played on just about any hardware that supports an operating system.
I’ve started an IF for my daughter to explore. She’s a lot more into reading the past few months, and seems to like the little world I’ve created for her. It’s not just a case of creating rooms and static objects, you can create a world as complex as you like, with objects and people that interact with you or each other.
The coding is not that hard:
A printedpages is a kind of container. A printedpages is openable.
A printedpages is always open. Instead of taking the printedpages:
say "You think about ripping out some pages for a second, then think better
of it."
On the top shelf is a closed openable container called a manual.
a printedpages called the pages is in the manual. The pages is fixed in place.
The description of the Pages is "After you read a few pages you realise this
manual's been well used. There are notes written in the margin of some pages."
Concealed Notes is in the Pages. Notes is fixed in place. Instead of taking
the notes: say "Short of ripping off bits of pages or photocopying them you'll
have to leave them where they are."
The description of Notes is "'Remember to add your own process checking scripts.'"
When playing the game it looks like this:
Book Store
You can see a blue door, a book case and a Sales Clerk here.
>examine book case
It’s a simple book case with a top, middle and bottom shelf.
>examine top shelf
An dusty empty wooden shelf, save for a Red Book and a manual.
>get manual
Taken.
>examine manual
You can’t see inside, since the manual is closed.
>open manual
You open the manual, revealing the pages.
>examine pages
After you read a few pages you realise this manual’s been well used. There are notes written in the margin of some pages.
>examine notes
“Remember to add your own process checking scripts.”
>get notes
Short of ripping off bits of pages or photocopying them you’ll have to leave them where they are.
>get pages
You think about ripping out some pages for a second, then think better of it.
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