06.28.07
Posted in Health at 8:25 am by emerym
This morning I had to do the school run and without a car. As normal Sophie took ages to get ready and we left late, despite being woken up early. We had to move at a faster than normal pace but we got there just in time. From the chest down I feel fit and fine. My shoulders are not too bad, but my neck is making clicking and grinding noises and my throat felt like it was closing up. Thankfully it’s already calming down.
The remaining problem with the shoulders, neck and throat have all been put down to the same cause by three doctors. What I hope will be my final set of treatment starts Monday 10AM in London. At the moment I’ve no idea how many times I’ll need to see the specialist and how long it will all take to resolve. Hopefully it will move along as quickly as the days when lymphoma was first suspected.
I hope to start my return to office after the first couple of treatments, interleaving any further treatment with trips to the office.
It’s been a couple of weeks now since I had bad fatigue. Last Thursday I had to take a nap for a couple of hours as I felt extremely tired and couldn’t fight it any more, but there was no aching or pain with it and I’ve only reached for the tablets a couple of times since due to headaches.
As my strength has been steadily coming back I’m going to start some gentle swimming tomorrow. I was talking to someone about swimming last weekend when one of their kids piped up saying “It’s good for the body and soul!”. Such young words of wisdom 
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06.24.07
Posted in Hardware at 10:58 am by emerym
Last night I was going to write another post about my recovery, and how I’m so close to returning to the office but still get a “Not quite yet” from the Doctor. I’d just rebooted my old laptop to find it crashing when starting Win2k. I tried Linux and found that in a total mess too.
I’ve had 4 drives fail in the last 12 months, 1 SCSI, 1 IDE and 2 Laptop drives. I got me thinking about solid state drives. There are some nice Flash ATA drives on the market, but they cost quite a lot. As I’ve got a number of Compact Flash drives still from my HP Jornada, I thought I’d go looking for a Laptop IDE/CF module. I’ve found one from Addonics!
It allows you to use two CF cards. I’ll only have 3GB with my existing cards, but it won’t make a sound or have a head crash. I’ll update this post when I’ve got one and have it working.
UPDATE: I’ve got the parts, but have held off using one in my laptop until I have a larger CF card. The desktop ones work fine.
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06.15.07
Posted in Art at 3:41 pm by emerym
Here’s a scan of a drawing I did last Sunday while Sophie was playing with the other children in the park.
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06.14.07
Posted in Health at 6:21 pm by emerym
This afternoon I put some music on while helping Sophie wash her Jelly Stickers (latest fad at school). Letting the system pick tracks at random I got “I go swimming” from Peter Gabriel’s “Plays Live” album. If I had a private pool I’d probably be in there now, I’m so looking forward to having a swim, even a very gentle slow one. Public pools are great for passing germs around, so I’m avoiding it for the moment.
A few weeks ago I got some Arena Cyclone swimming goggles from the sales at the new sports shop in Bromley High St. Looking like a panda at the best of times due to bad sinus, normal swimming goggles can make my eyes look worse for an hour or so after a swim as they pinch the skin too much. These should be a lot more comfortable. I’ve seen some bad reviews for them saying that they don’t last more than six months, but that’s from pro swimmers who I expect are in the pool a lot more than me.
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Posted in Art at 11:53 am by emerym
Yesterday evening I took Sophie to her squash lesson. While watching her playing I did a few drawings. The first was a very quick sketch done with Pocket Artist on the PDA. I think I’m slowly getting better at bodies.
The battery then gave up and I had to find some paper to do these. Lots more study and practice needed on heads..
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Posted in Health at 11:53 am by emerym
I had a lovely day yesterday. I’d even booked another visited with Dr Johnson in the morning. I saw Dr Girdher and Belinda in the morning, giving them the full history of my illness. Dr Girdher asked me to rate how I felt. Given my last major fatigue problem was Tuesday of last week and I felt good I said 90 something percent.
I then said hello to some of the team and had chats with Steve, Wei Li, Mike and James. The afternoon was good too, I picked up Sophie from school and took her to her squash lesson. Come 7:30 I started feeling tired, but didn’t think much of it at first. By 8PM I realised the fatigue was back in a nasty way and had to go back on the Ibuprofen and lie down before I fell down or snapped at the people I love.
This morning my legs, neck and shoulders ache again. I didn’t think I’d been that active yesterday, but maybe I did more walking at a faster pace than I’ve been used to. The appointment with Dr Girdher had been pulled forward 30 minutes last thing and maybe I rushed too much. I wish it were possible to test for the Interferon and Interlukin with something like an electronic Diabetes tester. I’d have a record of how things were going, based on hard data not just on how I feel, which can be suppressed a bit by pain killers. I’d also be able to plot a “Cricket” graph for Steve. 
[Geek joke] I’d hopefully also get an earlier warning that the fatigue was coming.
I’ve got the home accounts up to date, fixed a bug in my rlToday support script “Sys-to-Reg” and written a couple of blog updates which has diverted my attention for a bit. Sophie will be home in under 3 hours, I think I’ll get some more reading material downloaded.
I better make a point of resting in the middle of the bed as the last time I read with the laptop in bed I fell asleep and rolled over. When I woke I found the laptop dangerously close to falling off the bed. I know some ThinkPads have acceleration detection circuits that shut down the laptop drive before impact, but I’d rather not put it to the test.
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06.08.07
Posted in Health at 11:42 pm by emerym
Mr Angry has left the building. At this stage in my recovery any change in diagnoses is largely irrelevant as long it’s not to say “Oops, sorry, it’s lymphoma.”
Reflecting on the other day I think part of my frustration comes from watching too much Star Trek in my youth, but more on that in a moment.
My local GP has given me a prescription for Penicillin, 500mg 4 times a day in an attempt to get my odd neck issue sorted. We spoke about blood tests. The “Harley St on 15″ centre at UCH has equipment that does blood tests in only a couple of minutes. My GP was amazed, he’s used to waiting days for the results from tests. The Magnetic Resonance Imaging (MRI) scanner was invented in 1970, the first units came into hospitals in the early 80s. The Computerized Tomography (CT) scan was invented in the early 1970’s and the Ultrasound scanner was invented in 1984. All of the current Hi-Tech scanners and blood analysis equipment has come about in a relatively short time. Distributed computing like the World Community Grid is helping find cures for things like Cancer, Muscular Dystrophy, AIDs and other medical problems by spreading the load over a vast array of computers.
Medical science has come a long way but we’re still not at Star Trek levels. But given the current rate of change in technology how long will it be before the Medical Tricorder is a reality?
Take a massive array of computers and higher res data from scanners and who knows what will be possible in another 5, 10 or 20 years. The Star Trek fan site Memory Alpha says: “The computer core houses primary processing equipment.. 24th century ships had isolinear cores [holographic technology to store data three-dimensionally throughout the medium]. The computer cores communicate with each other and ship’s systems via optical data network (ODN).”
Optical storage and computers? It’s all coming. Hopefully by the time my daughters an adult the Medical Tricorder wont be too far behind it and she wont ever need to accept “Don’t Know”.
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06.06.07
Posted in Health at 9:09 am by emerym
The fatigue on Monday worsened through the day, as did the feeling in the neck. I had to change pillows that night to get some sleep. Tuesday wasn’t great either. I’ve been forcing myself to do a bit of reading for work and MortScript coding for fun, just to stop myself from slipping into a mental abyss. Boy does daytime TV repeat. “Fed up” doesn’t come close. Sophie and I LOVE real roller coasters, not this one.
I mentioned the fatigue and testing for Interferon, etc, while having the blood tests yesterday, they didn’t show much interest. While we waited for the Prof his PA said the money from the examinations was put towards paying off the £16M deficit UCL/UCH have, not their salaries. The Prof examined my neck but said nothing seemed wrong, he couldn’t feel any small lumps. I pointed out the swollen areas, which don’t feel small, he just thought it was my neck muscles. I’ll give it a while more to see if it settles down on it’s own. If not I’m getting a second opinion from a neck specialist.
He dropped a bomb shell. The second histology report was finally back after two months – they “Don’t think it’s Kikuchi”. Not “Definitely not”, just “don’t think”. At least they said it’s not lymphoma. I was told the first histology report said it definitely was Kikuchi, so which lab got it wrong?
If it’s not Kikuchi, then has much of the last four months been wasted when maybe I could have been treated in other ways to help speed up my recovery?
I came away with a whole mixed bag of emotions, mostly anger and confusion. “Kikuchi-Fujimoto” had been dismissed and replaced with a lot of “don’t know” and “reaction to a virus”. I couldn’t help but wonder what value they were giving me vs helping to reduce the university overdraft. In a true “You really are plugged into the Matrix” moment I got back on the tube and started playing music on my PDA. The random track it started with? Midge Ure: Answers To Nothing.
“Lying in my bedroom, a man comes on my TV with a grin
He tells me to believe him, he said that I should put my faith in him
He says he has the answers, but his words are only
Answers to nothing”
Having the wife call all doctors “quacks” and remind me of my neighbor Peters misdiagnoses and resulting death didn’t help my mood much. I’m going to spend a while on the phone today talking to the Critical Health Team, the original consultant and his PA. A third histology opinion is probably not worth it, as I’ll have hopefully recovered by the time they sort it out, if the two months was anything to go by..
The wife’s just come back from another B.N.I meeting, someone there says I should do “Bioresonance Therapy”. Sounds like another load of smoke and mirrors rubbish to me.
UPDATE: Just so it’s clear, my anger was directed more at the labs, not the person having to pass the info on.
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06.04.07
Posted in Health at 10:03 am by emerym
I hope I’m not reading the signs wrong, but I think an end to this Kikuchi is in sight. No fatigue Friday, Saturday or Sunday and only mild fatigue so far today. Lets hope it stays that way. Saturday afternoon and Sunday were the best days I’ve had for a long time, which was nice as Sophie had been off on half term all week and didn’t have a great time with me not feeling good and Denise working. The sun was also out in a big way this weekend, so feeling good and warm gave me a much needed lift.
A few days ago my wife said she hoped it would be over soon as when I’m down and suffering from the fatigue I’m a different person. I know I can have a very short fuse at these time, but if others ignore how I feel, don’t listen to “Stop” or “No” and push me too far, it’s their actions that bring out Mr Hyde.
Part of my neck has been swelling up for the last two weeks, so I’ve pulled my appointment with the Prof forward to tomorrow rather than see the local GP. I think it’s the lymph nodes as it’s both the left and right side around the hight of the Adams Apple. It could be down to a secondary infection rather than the KFD, as I think I picked up a cold from Denise a while back. Hopefully it’s nothing major and will pass soon.
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