Monday, September 29, 2008
Her treatment protocol (UKALL 2003) predicts 118 weeks of treatment. Equals 2 years and 14 weeks = 2 years 3 and a ½ months.
Two years and three and a half months will therefore come to an end on the 5th October. She will go off-treatment around 20 October.
Given a bout of chickenpox and a couple of other “minor” infections, finishing treatment only two weeks behind the protocol schedule is truly a wonder of modern science.
Thursday, September 25, 2008
I walked into work euphoric. I even told a few close colleagues and the substitute boss how happy I am (making up a little fot last week's disappointmemt). Leukaemia and its treatment, absence from family etc have become so routine that I could not imagine an end to it ...
I rang Ann, mother of Hayley ... Hayley at the age of 16, was admitted a short time before us ... Hayley went “Off-Treatment” last week. The conversation went ...
Me: So some normality has returned?
Ann: Kind of ... but it's a different kind of normality.
It will be, I realise.
The anxiety of Rob's “When the Other Shoe Drops” rings true ... but at least Kezia will be able to go to school every day.
At least we won't have to suffer Dex trips.
Wednesday, September 24, 2008
Nanda has been content this week – particularly as the hospital transport arrived early and they also got home early.
She even laughed at my reply to her enquiry about her suspicions of my sexual philandery (don't worry - I don't – it's just part of sexual culture here) – “yes, I'm having an affair with Mrs Hand and her five daughters” (a well-worn Ben Elton witticism).
As I won't be there for Off-Treatment Day, I must talk with Pete, Paula and Stefan about an Off-Treatment Party!
Will Kezia understand?
Thursday, September 18, 2008
Sometime in the last two years, I bought her “Collected Classics” - “Mediterrean Food”, “French Country Cooking” and “Summer Cooking”. As with Alan Davidson, her books are highly readable – classics of culinary literature that can be read in bed before shut-eye.
Very much different in style to Alan Davidson, she is also anecdotal at times, but in chapter introductions rather than Alan Davidson's style of individual recipe anecdotes. The recipes are mouth-watering.
Recently two new house-guests arrived ...
If Alan Davidson's recipe for duck egg and fresh tuna omelette doesn't happen soon, they may well end their days in an Eizabeth David recipe.
Wednesday, September 17, 2008
He learned yesterday that under my employer's laws he is not allowed to advance annual leave to someone on my type of contract under which I accrue 2.5 days per month. As a man-of-honour he said he would honour his prior agreement to advance annual leave in October but after this, could not.
Implication of this ... I would not be able to go to the UK for Christmas and New Year on paid annual leave as I would lose the 7.5 days of accrued annual leave (payback).
An emotional and financial choice – go back in October to join the family on holiday at the seaside in Blackpool.
I desperately want to see them.
But Christmas and New Year are times when the family should be together.
So I am devastated ... decision?
I wait until Christmas.
Only upshot of all this, is that I'll save an airfare and this FY, if Nanda, Jaime and Kezia return here, we'll need every penny that counts for airfares and shipping of the household effects they have accumulated.
My opinion of my employer lowers and lowers ...
Tuesday, September 16, 2008
We had a small party at work last Friday afternoon to welcome our boss' substitute whilst he goes on annual leave and somehow me and the boss got onto the subject of a BBC article about the last survivor of the Great War (now more commonly known as World War I).
Memories and reminisences of both my grandfathers, who served in the military during the Great War, returned ...
My paternal grandfather served in the Royal Flying Corp, then part of the Army, and not an independent military service as the Royal Air Force is today. He served as a Navigator/Gunner, and after the war a couple of years as a trainer. I remember an album of postcards of French scenes he sent to his fiancee and then wife. His unit turned up for the wedding and presented them with an engraved wooden propeller-tip in which a wedding photo had been mounted.
He died in the late 1920s from non-Hodgkin's Lymphoma.
My maternal grandfather served as an officer in the trenches before he “got a Blighty” i.e. a wound sufficiently serious to be evacuated back to the UK after c. six weeks. The long-term effect of the injury caused him to become virtually blind. However, he became the Headmaster of a very prestigious Yorkshire boys' grammar school. He could identify the students by their voice, by the vibrations of their footfall, their smell etc. All necessary school documents went into Braille. During World War II, although blind, he led the local Home Guard unit. After his retirement in the early 1960s they moved to Exeter in the southwest of England.
At some point in the late '60s Mum had to have a hysterectomy and Grandpa and Grandma looked after us for a week. I was amazed at his ability to navigate with just a white-stick (no guide-dog). Everyday he would go to the local indoor swimming baths and do twenty-four lengths of the pool followed by a stiff warmed rum. He would take me and my brother to the local park to play on the swings and round-abouts. There was a small blackboard in the front-room with coloured chalks where I and my brother would draw “romantic” scenes of the Great War. However, he would never talk to us about it.
Perhaps the most lasting gift from my maternal grandfather, was a love for the music of the Russian composer Igor Stravinsky ... I have a very vivid memory of Grandpa putting 78 rpm vinyl (and often changing it!) of Stravinsky's Firebird Suite on the gramophone and making us sit to listen to it.
I was enthralled and started gesticulating wildly conducting the orchestra ... Grandpa's very limited vision could sense my arm movements and he asked what was up so I explained. I think he was pleased.
And from that experience of Stravinsky, I much later learned about the Ballet Russes, Diaghilev, Nijinsky, Pavlova, Massine, Bakst, Erik Satie, Debussy and many others.
For that I am grateful to my Grandfather ...
Of course, my mother's story is different ..
Wednesday, September 10, 2008
People such as Tom who often drives the family from home to the hospital and back, is retired and an official volunteer (non-emergency) ambulance driver, unpaid and using his own car, just receiving an expenses-per-mile reimbursement.
There are many such as Tom – who devote their spare time to public and charitable service. They work in charity shops, soup kitchens and night shelters for street-dwellers, St John's Ambulance at public events, shake charity donation bottles on the street on Saturday morning ...
When the July 2005 bombs went off on the London Transport system (both terrestrial and sub-terrestrial), Jane and Joe Public stopped in the middle-of-the-road and went to help.
That is Great British Public.
Over the last two years the “local” Strategic Health Authority and the “local” Acute Care Trust (directly responsible for the local general hospital) have conducted their consultations to “reform” hospital services in the Greater Manchester region. Regardless of what us “punters” said, regardless that we (in one of the most impoverished areas of the UK) didn't want them, the cuts in services at the local general hospital, have gone ahead. No longer will Kezia be diagnosed with leukaemia on a Sunday afternoon at the local general hospital – there will no longer be A&E, paediatric or obstetric services – don't have a baby on the weekend!). We were consulted about “cuts”. Nobody wanted them. We were told to “fuck off”. We were shafted.
Now the local Primary Care Trust wants to consult us. Well, we ain't got much confidence in NHS consultations any more ... our town's citizens must be saying “You've just ignored our opinions in two major consultations – what the fuck is the point of completing another loaded questionnaire, attending another public meeting?” (Sorry, wrong jargon - “Consultation Event” - “see page 14 for further details” – the pdf download has no page nos, there are no details about where exactly and at what time these “Consultation Events” will take place - what the fuck company have they paid to produce this document?) ...
... and I think they realise.
So they are bribing us to complete their biased questionnaire, following Lord Darzi's example.
1st, 2nd and 3rd “out-of-the-hat” will be offered either a) Wii and Wii Fit (what the fuck are those?) b) a weekend break for two (where not specified and who's going to look after the kids?) or c) a one year Leisure4Life leisure pass for two (repeat comment on a) plus where can we use it?).
The next hundred “out-of-the-hat” will receive a calendar clock.
We are not told if we will receive a canapee at or even a bus-fare to a “Consultation Event” (so why bother going?).
Such is going on throughout the country.
NuLabour is taking the “Great” out of the British Public.
P.S. for Dr Rant – I'm not as good at expletives as yourself! You should have been struck off long ago!
Friday, September 5, 2008
"Being ill when you are a child or growing up is such an enchanted interlude! The outside world, the world of free time in the yard or the garden or on the street, is only a distant murmur in the sickroom. Inside, a whole world of characters and stories proliferates out of the books you read. The fever that weakens your perception as it sharpens your imagination turns the sickroom into someplace new, both familiar and strange; monsters come grinning out of the patterns on the curtains and the carpet, and chairs, tables, and wardrobes burst out of their normal shapes and become mountains and buildings and ships you can almost touch although they're far away. Through the long hours of the night you have the church clock for company and the rumble of the occasional passing car that throws its headlights across the walls and celing. These are hours without sleep, which is not to say they're sleepless, because on the contrary, they're not about lack of anything, they're rich and full. Desires, memories, fears, passions form labyrinths in which we lose and find and then lose ourselves again. They are hours when anything is possible, good or bad.
This passes as you get better. But if the illness has lasted long enough, the sickroom is impregnated with it and although you're convalescing and the fever has gone, you are still trapped in the labyrinth."
The Reader, Bernhard Schlink
Thursday, September 4, 2008
I've been wanting to run an Operating System emulator ever since I bought the May 2008 edition of Linux Magazine accompanied by a Live DVD running Ubuntu 7.10 with the Innotek VirtualBox emulator with five other distro image files (.iso) on the DVD and automatically loaded into the Innotek emulator. But, being IT thick, I've failed to work out how to configure Innotek VirtualBox.
I have a 40 GB hard disk equally divided into a Windows XP partition (used 0.1 %) and an Ubuntu 7.10 partition (installed from aforesaid DVD and previously used 99.9%).
Then my boss asked me to prepare some legacy and redundant machines to donate to various local institutions. It would have been irresponsible of us to donate legacy machines with the no-longer-supported MS Windows NT 4.0 and no current anti-virus software + I was obliged to "zap" the hard-disks so no data remained. So I needed to install something supported on a small machine, both hard-disk and RAM, that would run applications, some specialised, and in our local language. I played around with various "lite" Linux distributions - some thing like Fedora or SuSe would be far too demanding for these machines - and finally, I came across Xubuntu 7.04 - perfect! Local language, wordprocessor (AbiWord) and spreadsheet programs that can open and save to MS formats etc etc. Rather than using Gnome or KDE as memory hungry GUIs it uses the Xfce GUI.
This got me interested interested in even smaller Linux distros with a GUI and applications - and I came across Slax on which I am writing this and will save to MS Word format before copying into the blog. Based on another Linux distro, Knoppix which itself derived from major Linux distro Debian, Slax will run from a USB stick - as small as 256 MB. You can carry the whole bloody thing around with you on a USB stick - applications and all. Change your machine's BIOS settings to boot from the USB stick and you're away.
Default applications - a word-processor, a spreadsheet, web-browser, email, video and music players, pdf viewer, Paint program, photo viewer, an instant messenger etc etc. Non-default applications (given I now have Slax installed on aand boot from a 4 GB USB stick) - Skype, Google Earth etc etc ...
... and an Operating System Emulator!
As I am running Qemu from my USB stick, I could find little advice on the Qemu site, support groups etc on how to do this. Everyone running Qemu seems to be running it and the emulated OS from their hard-drive.
1. You first to have create a .img file somewhere to run the OS .img file. I creaated the .img file on my hard-drive for spaace reasons ... take into consideration the size of the OS you want to emulate.
To do this (logged on as "root") I opened a Terminal window and issued the command: qemu-img create /mnt/hda4/hd.img 5G which created a hard-disk image file of 5 GB on my hard-disk Ubuntu partition. Choose the size of your .img file - I'm sure the larger the better.
2. I then downloaded a GUI Qemu Launcher that allows me to select the OS.iso file.
3. The Qemu Launcher launches the OS from the LiveDVD OS with the command qemu -kernel-kqemu -cdrom + location/OSfilename.iso. kqemu speeds up qemu.
More things to do ... I'd like to run my Windows XP partition emulated under my Linux ... but all the Qemu advice I've seen is that you need to this from a Windows installation disk (.iso).
Disappointments: LiveDVD isos seem to come with the OS, the GUI but no applications!
Wednesday, September 3, 2008
Tuesday, September 2, 2008
"For those working in the NHS. there is a need to reduce unnessacary bureaucracy, freeing up their time to care for patients, within the resources available"
So here I will summarise some (of what you haven't) Lord Dr Darzi's proposed reductions (which I asssume you approve of) in the bureaucracy (of which you as professionals seemingly disapprove) and me and mine as
patients clients will forthwith benefit from/be subjected to (which do I strike out?):
p. 9 A COALITION FOR BETTER HEALTH
p. 10 REDUCE YOUR RISK - campaign to prevent cardiovascular disease.
FIT FOR WORK services
CARE QUALITY COMMISSION - already exists, more powers
NATIONAL QUALITY BOARD
p. 12 CLINICAL EXCELLENCE AWARDS "to be strengthened"
OOF - to be revised
WORLD CLASS COMMISSIONING - will now include PCT medical directors and quality boards.
QUALITY OBSERVATORIES - in each SHA
p.34 STRATEGIC NEEDS ASSESSMENT
CHILD AND YOUNG PEOPLE'S HEALTH STRATEGY - "... will seek to build on the new Child Protection Programme".
p.45 NATIONAL PATIENT SAFETY CAMPAIGN
'NEVER EVENTS' lists - in each PCT in conjunction with the above NPSC.
p.50 "National Quality Metrics"
p.51 QUALITY ACCOUNTS
COMMISSION FOR SOCIAL CARE INSPECTION - already exists?
p.52 COMMISSIONING FOR QUALITY AND INNOVATION SCHEME (CQUIN)
pps. 52-53 new schemes to "accredit" GPs in psychiatry and radiology.
p.53 WORLD CLASS COMMISSIONING programme
SHA MEDICAL DIRECTORS to help out current Public Health and Nurse Directors in each SHA.
SHA CLINICAL ADVISORY GROUP - (to advise the above bunch of dumb directors?).
p.54 NATIONAL QUALITY BOARD to advise the DoH.
Did I mention the CQC ... oh yeah, think I did.
p.55 BEST PRACTICE TARIFFS
p.56 HEALTH INNOVATION AND EDUCATION CLUSTERS
p.57 ACADEMIC HEALTH SCIENCE CENTRES
p.66 LEADERSHIP FOR QUALITY CERTIFICATES - LEVELS 1, 2 & 3 - and knowing how ambitious you are, Drs Rant,
Z. and NHS Blog Doctor, you will need to get a Level 3 Certificate to become a senior director.
p.67 And Drs Rant, Z., and NHS Blog Doctor, if you get that Level 3 Leadership for Quality Certificate. then I will be very happy - as you will sit on the NHS LEADERSHIP COUNCIL.
Where are Jaime, Kezia, Nanda. Paula, Pete, Stefan, Simon, Margaret, Drs Rant, Z., and NHS Blog Doctor, Joe and Jane, John, Dennis and Babs in my local pub, Dr Ahmed who diagnosed Kezia, Dr John who has cared for Kezia since Day 1, our socialworker Teresa, Lucia, Hayley, Ann ... and many others ... in all of this?
Why does Angry Angus have to write this - not you professionals?