05.29.07
Posted in Health at 5:30 pm by emerym
I’ve been cutting back on the pain killers for the last week as I’d started getting stomach pains.
The fatigue didn’t come until Saturday 3:50 PM. I was at my parents with Sophie. I got a feeling in my neck that was somewhere between neck ache and someone having their hands lightly around my neck. That and the sniffles. Saturday night my shoulders started to hurt. Sunday and Monday were not very pleasant and I spent a lot of the time trying to rest or sleep – when Sophie would allow it. She’s got a memory like her two goldfish at the moment. We looped around “Sophie stop kicking the bed”, “Sorry, forgot” far too frequently. With hindsight I think she just wanted some attention.
I’m guessing the lymph nodes in my neck are the last to sort themselves out.
Today has been a bit better with less fatigue, but a feeling of being drained. I went to rest somewhere between 12 and 1 and got woken up at 15:30. Denise drove us all into town to buy Sophie a sports top, I’m tired again. I just popped into the village to get some bread from the CO-OP and couldn’t suppress some massive yawns while stood in the queue. The lady behind the counter jokingly said I should go back to bed. If only she knew..
I’ve been reading more on Python on and off, so far I like what I’ve seen. If it has Regex support as good as Perl I may make the switch…
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05.24.07
Posted in Health, Humour, Music at 4:05 pm by emerym
I had another consultation with Dr Phil Johnson yesterday. We talked among other things about how others perceive my illness. He put it as “You’re neither terminaly ill nor terminaly well.” which made me laugh. It’s always nice having a chat with him. 
We also talked about how lots of money gets pumped into cancer research.. see below for something that helps in a small way with cancer care.
I’ve got a medical certificate for a further month from my own GP, which is making the wife worried about my return date. To get back in the swing of things I’ve got my work VPN access fixed (Thanks Jim!) and have started doing some reading of internal docs.
It was also nice to see the guys at the office in our new location. Sorry I didn’t sort lunch out. Marc being off sick with a fever through me. Hope you’re feeling better! It’s a nice quiet desk we’ve got, what a result! (James, Wei Li and I have had BIG problems with noise levels in the past).
A good while ago my sister, Dr Karen Lowton introduced me to the music of Adam Kay and Suman Biswas aka The Amateur Transplants – “two junior doctors who practice medicine with varying degrees of success.” The track was “Mr Burton” from their album “Fitness to Practice”. If you like Derek and Clive you’ll love these guys. 
I had wanted to play it to Dr J while we compared gadgets, but a software update had knocked out my phones ability to access the storage card properly.
10% of all proceeds go straight to Macmillan Cancer Relief.
BTW Karen, did you know searching for “Dr Karen Lowton” in Google results in a #1 match “Dr. Karen Lowton: Gerontology: King’s College London”. Searching for “Mark Emery” results in a hit for a substance I’ve no interest in whatsoever – I’ll stick to my Ibuprofen and Paracetamol.
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Posted in WM PDA Phone at 2:07 pm by emerym
Thanks to a blog comment from Wei Li I’ve started to look into the Python scripting language. I’ve got Python on my Linux hosts, but wanted it on the TyTN too so I can experiment with it wherever.
Thanks to PythonCE I can now do this. Venster, or in this case
VensterCE adds a Windows GUI layer. VensterCE also comes with an IDE with built in console for writing and testing Python apps. Python 2.5 docs here.
If you want to try them out note that config.py and pyceide.py will probably need editing. Config.py has “EDITOR_FONT_SIZE = 5″ which makes the Python script way too small to read. Pyceide.py has the line “self.nbfont = Font(face=”Tahoma”,height=25)” which makes the icons at the bottom way too big! I changed 5 to 10 and 25 to 14.
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05.20.07
Posted in WM PDA Phone at 9:57 pm by emerym
I ordered a few bits off eBay a couple of weeks ago, total ~ £20 with shipping. A rubber/silicon skin was one, I thought it might help stop the phone vibrating off shiny surfaces and it does the job quite well. I’d expected it to be blue but got black, hence the Spiderman “Venom” skin I’m creating for rlToday.
I also ordered a couple of cables. A three way adapter that allows any combination of 3.5mm headphone jack, mini USB and HTC 11-pin plug to be plugged in at once. Ideal for listening to music while charging at the same time. The other cable is a 3.5mm socket with microphone and volume control to HTC 11-pin. With either I can now use my Bose headphones with the TyTN. Anyone listening to the TyTN via the earphones it ships with may wonder how good the sound output is realy like. It’s very good and I can now understand why software developers have been adding lossless FLAC support to media players.
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05.18.07
Posted in Art, WM PDA Phone at 5:37 pm by emerym
I’ve always been a visual person, liked drawing and did Art and Engineering Drawing at school. I was alright with still life but any people I drew looked like cartoons. The proportions were always wrong.
A number of years ago I bought Vectorsoft Draw for my HP Jornada when version 1.23 was current. I though I’d lost it but recently found a copy on a small Compact Flash card, it works just fine on the TyTN. I’ve started drawing again, and found the site “Invention to Human Figure” by Riven Phoenix. He’s got a fantastic series of lessons on how to draw the human figure. The first set of lessons are online as YouTube videos, a 5 disc DVD set with all of the videos in full is only £35. When you see his client list includes the likes of LucasFilm and ILM you know the guy’s good.
I took one of my wire frame figures drawn to Riven’s rules and put it over a photo of myself. It’s a reasonably good fit.
Sophie and I have gone through lessons 1 and 2 of 227. After only these two lessons our drawings are already looking better.
Only another 225 to go!
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Posted in Health at 4:57 pm by emerym
I’ve spent this afternoon at my neighbors and drank a bit too much white wine. It was Peters funeral today, the date was wrong in my previous post. It was the best and most personal service I recall. It was quite moving, on numerous levels. One of his sons and his daughter did a lovely speech.
After the service we went back to the house for drinks. Being told by his brother this afternoon about his misdiagnoses I felt both quite angry and lucky. If he’d seen the right people first there is a very good chance that he’d still be with us. It made me think how lucky I’ve been out of the three of us neighbors.
That said I was told by Prof Linch that the biopsy slides hadn’t arrived due to a communication problem with the lab. Hopefully the answers won’t change. I’m sure my recovery wouldn’t be going as well as it is if the diagnoses was wrong
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Posted in Health at 8:49 am by emerym
But not of the bike kind!
Looking back on the last few months and weeks shows that recovery is happening, just not as fast as everyone would like. I’ve gone from fatigue all the time to good day bad day to the cycle I’ve attempted to draw below. Part of me wishes it was the other way around so I could have better weekends with the family.
Wednesday was a very good day, both physically and mentally. I got the laptop out to VPN into the office to do some reading. Unfortunately it needed a fair bit of work with the security and patching systems due to it’s time off the network and I’m still not able to log in. Hopefully with a little more help from J.O’D we’ll have it fixed today…
Friday: Despite lots of help from J.O’D it’s still not letting me onto the network..
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05.10.07
Posted in Uncategorized at 3:30 pm by emerym
I got to see the Professor Linch again on Tuesday and have more blood tests. The tests came back alright, my kidneys and liver are not suffering and my hemoglobin levels are not dropping, which is apparently one of their concerns. He was happy to hear that the good day – bad dad cycle is slowing down and has stretched out to good days and bad days, most of which are less severe. He says it could still take some considerable weeks to get past this stage of the disease. 
One of the things we spoke about was stress and avoiding it…. which was ironic given what would follow.
That day I’d been converting a MortScript on the PDA to Perl to see how much faster it would run. It should have been a simple stress free task.While at the hospital I had to wait quite a while and was getting most of the bugs out – missed “;” at the ends of lines, If .. EndIf blocks I’d not converted to If () {…} properly, etc. By the time I was back home I had it reporting only two syntax errors. Only two. They were simple lines, yet could I fix them? They looked fine. I was getting rather wound up and brought on a fatigue attack. Latter on after calming down and resting for a few hours I looked at it again and spotted the problem. Perl is case sensitive so “If” should be written “if”.
Then yesterday various family events lead to even more stress and the worse evening I’ve had in ages. To top it all, this morning I went to open the blinds in the living room and as I reached across the chairs for the cord a violent sneeze caused my to pull my back! Hopefully my back will be better tomorrow as I have my next-door neighbors funeral to go to at lunch time. This week month year could have gone so much better.
A big Hi! to Steve and Matthew in NY, it was good talking to you, Steve I hope you find an answer to your issue.
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05.04.07
Posted in Health, Kikuchi Fujimoto Disease at 11:12 am by emerym
If like me you’ve been lucky enough to be diagnosed with Kikuchi-Fujimoto Disease aka Histiocytic Necrotizing Lymphadenitis, not cancer, you’ll no doubt have been told that it’s extremely rare. Your own doctor might not be able to tell you much about it, other than it being benign and self-limiting. You may have Googled for it and still not found much, but if you found this post please drop me a comment! Below I’ve listed a number of things that I hope will help you cope with some aspects of the disease. The disease may impact you in other ways, if so please get in touch as finding others with the disease will be very hard, but you shouldn’t feel like your the only person on the planet with it.
The disease
- The disease was discovered by two Japanese scientists, Kikuchi and Fujimoto, hence its name. Kukuchi is an alternate translation, but less popular.
- As your doctor or specialist will have hopefully told you it’s a benign (non-cancerous), self limiting disease. It can take a long time for the disease to burn itself out, anything from weeks to months, I’m told 4-5 months it typical, 6 months or longer is unusual.
- It’s suspected to be an overreaction of the immune system to a virus, possibly a response to one of the most common human viruses, the Epstein-Barr virus.
- Unfortunately due to the nature of the disease there are no blood tests to confirm its presence. A biopsy, the removal and examination of a lymph node under the microscope, is the only option. I had a biopsy near the groin under local anesthetic, I’d not recommend local anesthetic unless you’re okay with hospitals, the smells and a fair degree of discomfort as the operation will not be quick if done properly.
- There are no magic cures, although steroids may be given as a very last resort if the disease lasts many months.
- It occurs more in Asia and typically in women around 30 years old. (I’m a 41 year old male in the UK.)
- As the lymphatic system is your immune system you’ll be more open to catching other viruses. Limit your contact with others if possible and take precautions to reduce chances of further infection. As viruses can enter the system through the eyes wearing glasses can help. I had some Snowbee “Prestige” fly fishing glasses from a holiday a few years ago. They’re ideal as they evolved from a Ski design and have deep, close fitting lens frames.
Moral and support
- Keep in mind that the disease has an excellent survival rate compared to Lymphoma.
- Stay positive, be happy to be a statistic. Your condition may have initially been reported as suspected cancer – Lymphoma, confirmed by biopsy to be KFD.
- You’re a lucky one in a very small number to be told you don’t have cancer. You had a higher chance of being dealt the Ace of Hearts from a deck of cards.
- Don’t think about the things you’re missing out on, keep a “Looking forward to” list. You’ll be over it soon enough.
- Keep yourself mentally active as much as possible. Reading, writing, finding the best tracks in your record collection, anything to keep yourself from getting into a depressed state.
- If your partner was with you when lymphoma was given as an initial diagnoses they will have mentally prepared for the worst. On hearing that it’s a not cancer but a disease you’ll recover from, your partner may switch to the other extreme thinking “They’re okay, nothing is wrong, they’re not going to die”. You may then find support from your partner drops dramatically. A doctor has explained this as a normal reaction in these circumstances, so don’t take it too personally.
Fatigue, sleep and exercise
- You may find that your body goes through regular cycles of fatigue, tiredness and feeling ill. I’m told by Professor Linch at UCL that it’s likely to be down to high levels of Interferons and Interleukin-6 that the immune system is pumping into the blood stream.When it’s at its worst or your feeling tired don’t fight it, rest, fighting the disease may make your recover longer.
- At it’s worst the fatigue may appear constant. Over time the cycles should become longer and the fatigue less extreme. On really bad days there may be nothing you can do but rest. On days where the fatigue isn’t as extreme try to carefully balance rest and movement, you may be able to slow the pumping of the chemicals into the blood stream and make your day more tolerable.
- Try and keep to normal sleeping hours, setting an alarm to wake you in the morning. If you then need more sleep during the day take a nap. This will help keep your body clock correct for your return to normal life.
- The lymphatic system is pumped by muscle movement. It’s important to keep getting some exercise so try and walk as far as you can each day without tiring. This will also help reduce muscle atrophy. The down side is that the exercise will pump the chemicals into the blood stream, so limit things when needed.
- If you don’t have any family or friends to give you support, plan your rest and exercise around things you must do, like visiting your doctor, the chemist or food shopping.
Drugs & Foods
- You may be prescribed Ibuprofen and Paracetamol to help reduce the side effects of the fatigue. If you find it brings on acid reflux ask your doctor about Omeprazole or equivalent natural remedies.
- There may be a lot of swelling around the biopsy site. Unprocessed pineapple juice is natures best anti-inflammatory.
- Alcohol such as white wine may help take the edge of extreme fatigue, but it’s not recommended if you’re on pain killers other than aspirin, ibuprofen or paracetamol as mixing alcohol and some pain killers can cause liver damage. Please check with your doctor if you feel the need to drink still, I’m sure you wouldn’t want to swap one health problem for another.
Work
- Even with an understanding employer keep in mind that they will want medial certificates from your doctor confirming that you’re unfit for work. Try to ensure there are no gaps between them, and keep them updated if the notes need to be extended. Otherwise they’ll be expecting you back when the last note expires.
- Although you’ll no doubt want to return to work as soon as possible, try and ensure you’re properly recovered before you do. If you find yourself trying to work through the fatigue and the mental fog it can bring, will you really be helping yourself or your employer? You may cause more problems, both with your work and health.
- If you really must do something for the office try and negotiate things that can be picked up and put down easily. When your suffering, the stress of working to a deadline, real or implied, won’t do you any good – you’ll find yourself working when you should be resting.
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05.01.07
Posted in Health, Holidays at 10:08 am by emerym
The weekend wasn’t good. Monday I woke with the shakes, even the wife was concerned for a while. Today I feel like I’ve got a cold still.
Sorry about the travel flame yesterday, but I’m getting fed up with the wife being stressed out by the “I want the world, all inclusive, with flights for £99″ brigade. What happened to paying a fair price for things? Consumer demand for lower and lower prices will end up reducing the options available to them in the long term.
Luckily there are some people willing to pay a fair price, but they’re a much smaller group. They end up in resorts with the best hotels with properly trained staff, etc. I see the division between “Excellent” and “Cheap” growing further.
I better find something else to do before this turns into a full repeat of yesterdays moan…
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