Thursday, December 31, 2009
Last night I dreamt that Kezia's local doctor prescribed a course of Dexamethasone. Visions of relapse and suffering ...
Happy New Year to Friends and Readers!
Friday, November 27, 2009
As my regular readers know, I have recently been made redundant by the United States government. During my 17 years of service with the USG I have variously been considered an employee and a contractor. I have regularly signed receipts for USD 600,000 + of diesel fuel. And as part of my annual contract received treatment for myself and my family from my employer's doctor.
Upon my termination I requested our family medical records. At first the manager agreed - the doctor was absent. On the doctor's return, I repeated my request and was informed I could have a copy of the records but the Federal Government would hold onto the paper records for five years. Wandering down the corridor to talk with Doc, I knock on his door to be told he will only allow me a "resume " of my family's medical records.
Yesterday Jaime's class teacher called a general parents' meeting. We also have the opporunity on an individual basis once a week. About eight mothers and three fathers attended - instead of commenting on the modalities of the school's operation regarding the class, they were more interested in their child's results .... Iput my hand up and told Jaime's class teacher, D. Anastacia, "I don't want my son's results read out to every other parent - I know his difficulties - I can meet you on Monday morning to discuss them." She and two other parents smiled in agreement
Friday, November 13, 2009
Wednesday, November 4, 2009
One might think everything should be sweet and rosy since the family's return at the end of July but it has not been so easy ...
Jaime and Kezia are well-esconced in the best schools on the island. Kezia had her first physical and blood test two weeks ago - everything fine. However, she is suffering fro what appear to be insect bites (but from which the rest of us are not suffering) and we are keeping them at bay (i.e. not infected) with antiseptic cream. However, doctor appointment tomorrow or Saturday.
The Darkness - my unemployment, debts, stretcing a long way to make ends meet, enormous electricity outages, very slow or no Internet, not keeping up with the web, Internet leukaemia friends, reverse culture and relationship shock and difficulties etc etc.
Friday, August 21, 2009
"Listen", I said. "I don't know from writing a book. I have all this stuff in my head that I want to get down, but what do write about fiirst? Where do I begin?"
Without looking up from the boxes of detergent to which she was fixing price tags, Denise graciously delivered up a pearl of her accumulated wisdom in a voice of bored but benign condescsension.
"Start off with the saddest thing you can think of and get the audience's sympathies on your side. After that, believe me, it's a walk."
Watchmen, Alan Moore & Dave Gibbons 1986-87.
In other news: the family has returned, domestic strife and I've been made redundant. Hence the lack of blogging ....
Thursday, July 23, 2009
- Member of Parliament expenses
- the National Health Service IT programme to keep all our healthcare records in one massive database
- government plans to introduce a national ID database
- various losses of confidential data on computers, USB sticks and even paper, both civil and military
- Joao de Menezes murder by the UK police
it is time to change my head aphorism to ...
Quis custodiet ipsos custodes.
" Who watches the Watchmen?"
from Juvenal's Satires, VI, 347 - epigraph to the 1987 US Tower Commission Report into the Iran-Contra affair.
Monday, July 20, 2009
are far away
and I am blue
What'll I do?
What'll I do when I
am wondering who
is kissing you
What'll I do?
What'll I do with just a photograph
to tell my troubles to?
When I'm alone with
only dreams of you
that won't come true
What'll I do?
© 1997 H. Stephenson
Friday, July 17, 2009
Malarone with side-effects: neutropenia, pancytopenia.
Mefloquine with side-effects: principally psychological (bad dreams etc, nothing haematological)
Kezia's consultant wrote to our GP practice in the UK requesting they prescibe Kezia with Mefloquine. Our family doctor here recommends that Kezia takes Mefloquine.
Jaime and Kezia have been taking various vaccines over the last couple of weeks. And the "Nurse Specialist in paediatric and adult vaccinations" insists that Kezia takes Malarone, that she hasn't prescribed Mefloquine in ten years, and won't, that she has much experience in malaria prophylaxis.
Has she experience in paedeatric oncology/haematology? Has she experience in paedeatric oncology/haematology in malarial zones?
My brother Pete is going to try and get through to the Doctor rather than the "Nurse Specialist" tomorrow and sort this out. Thanks bruv.
Afrox - you have a long way to go.
And Drs Crippen and Rant you will hear more from me on "Nurse Specialists".
Wednesday, July 15, 2009
It seems the OGC's review of 2006 never took place!
Well, that was an ‘interesting’ week, in the sense of the Chinese curse ‘may you live in interesting times’…
Last Wednesday I went for my first dose of radiotherapy, (I have 30 doses to look forward to) which involved being stapled to a piece of steel for 25 minutes inside the mask I have had made up for me. To say it fits my face & throat like a glove is a bizarre exaggeration. It’s so tight that I can’t even open my EYES when I’ve got it on. Now THAT’S sensory deprivation for you. In fact, to riff off my Ripley / Alien theme, it really isn’t much different to having a face-hugger adhere to my face (thankfully without tube down throat planting alien seed in my stomach…)
Luckily, I’m not claustrophobic, and I can just about relax & persuade myself that it’s a bizarre, beepy, if oddly futuristic sci-fi spa treatment. Yes, I do have a lively imagination. Good thing too!
Anyhow, got that out of the way, and because it was Week One, I had to have one quick dose of chemo.
Quick? Well, that was the plan.
However, I had the worst reaction to any of my treatment so far.
When the Doctor asked me how I was, my answer was to throw up all over myself (how lovely – all my previous tossing-of-cookies has managed to hit a receptacle of some kind), have a massive collapse in the middle of Outpatients involving stretchers, ECG machines, nurses running around with heart monitors & twittering how I had a systolic blood pressure of 27 (impossible apparently) and a haemoglobin count of 7 (ditto).
Clearly, once again I just WASN’T GETTING ENOUGH ATTENTION and had to throw a big drama queen special. Sheesh.
So, I was hauled onto a Ward, and given my very first blood transfusion ever!
Three Bags Full, and all.
I am finally a true vampire living off the blood of others! How apt.
I’m only Type O Neg however, nothing exotic.
I was finally released on Friday night – or rather, I kind of discharged myself. I was fed up of not being able to stop vomiting. I just couldn’t eat the hospital food, and knew I was getting under-nourished, and would just get ‘iller’ if I stayed in. So, I am home and feeling better now that I can eat stuff I can actually (and indeed, literally) stomach.
So, it’s Monday, I have a wonderful friend taking me into radiotherapy, and here we go all over again!
29 doses to go. And counting, believe me.
Big love to all of you gorgeous gorgeous friends!!
‘Some people are like Slinkies, really useless, but make me happy when pushed
down the stairs...’
Thursday, July 2, 2009
As I clear up all these papers, more accumulate. On top of the latest pile is the British Society of Haematology/Royal College of Pathologists' January 2008 report Haematology Consultation Workforcr: The Next 10 Years. Table 1 is entitled Initiatives since the previous workforce document (2001) and is divided into "Rgulatory Initiatives" and "Influential Initiatives".
One of the latter is "Payment by Results". How the hell are they going to evaluate and pay Kezia's consultant on whether she survives leukaemia when he is following an approved protocol for the treatment of T-cell ALL?
Is the doctor reponsible for me drinking like a chimney and smoking like a fish?
Wednesday, July 1, 2009
It has been widely critisised - by NHS staff, by the wider IT community, by politicians etc etc. Data security, contracting issues, technology, deadlines, training, consultation ... the list goes on.
The state treasury's Office of Government Commerce (OGC) has undertaken reviews of the project's status since its inception in 2002. These reports, known as Gateway Reviews have remained confidential, out of the public and media's eyes.
The magazine Computer Weekly submitted a Freedom of Information Act (FOIA) for these reviews to be published in public. Thirty one reports were published last week. Computer Weekly has a summary.
In 2005 responsibility for the project was passed from the Department of Health to five mega-conglomerates of regional Strategic Health Authorities (SHAs) The North West and West Midlands Cluster (NWWM) consists of six SHAs.
The Gateway Reviews highlight outstanding issues as with traffic lights - red, amber, green. In the NWWM Cluster of nine recommendations, one is green, five are amber and three are red.
The review was made in 2005.
The original project was budgeted at ₤5 billion - it is now ₤12 billion.
The head of IT at the Department of Health has stated that if no radical progress is made by November 2009, a radical "shake-up" will be necessary.
The NWWM Gateway Review of 2005 expected a further review for early 2006 - it was not published (or not done?). I have submitted a FOIA request to the OGC about this.
My previous FOIA request regarding how much Microsoft was earning from this project was rejected.
Friday, June 26, 2009
Wednesday, June 24, 2009
In one paper relating to the life of a Muslim cleric in the early 19th century who promototed a militaristic concept of jihād. The author (Omar Jar) admits he does not have the answer to the rise of this aspect of Islamic philosophy but suggests:
"The European invasion and occupation of most parts of the Muslim World, which resulted in large numbers of Muslim leaders and scholars leaving their countries to take refuge in the Holy Land."
"The activities of the Ottoman [Turkish empire] agents [read today al Qaeda, Taleban etc] who took the opportunity of the pilgrimage to call for jihād against the infidels - the European powers who tried to dismember the [Ottoman] Caliphate. Hence the idea of Pan-Islamism advocated by many reformers and jihād leaders."
I don't make my views about Western innterventions in Middle Eastern, Central Asian and Far Eastern politics explicit on this blog. Regular readers will have a general idea. But ...
When will Western leaders (since pig-ignorant popes in the time of the crusades) learn from the lessons of history?
This post is dedicated to all the medical workers in crisis zones throughout the world.
Monday, June 22, 2009
(…and apologies to anyone (a) under 40 and/or (b) not a Brit as that cultural reference will have gone over your head without parting your hair. Yes I am over 40. I realise that is a shock. I should break these things to you more gently, I know.)
I’m into the final furlong of my week at the Christie, the end is hopefully in sight, and I get out tonight. (Sweet Bird of Space, hurrah!!)
It’s been a mixed week – mostly the choice being which meal shall I barf up next?
In addition, I had a ‘fabulous’ Friday wherein I hurled myself out of a bath and nutted the (very sharp) edge of a hazardous waste bin. Yup, a drama queen to the last, huh? Clearly I wasn’t getting enough attention throwing up, so I decided to throw a faint for a change. One moment I was towelling myself off, the next minute I was flat on my back with my heels in the air (if anyone dares say ‘no change there, then’ I swear I shall SUE your asses), surrounded by nurses asking me how many fingers I could count.
I am now sporting a fine scar, picture attached (only if you have email – sorry Myspace friends, I’m so not posting it). I think the dopey grin is sheer relief that I didn’t faint while I was IN the bath… hmmm.
But my week has improved dramatically since then (could it get worse?) when I discovered that I could order halal meals – yes, CURRY!!!!
For some bizarre reason I thought the halal menu was for Muslims only, but no, not at all. Since then I have been stuffing myself cheerfully with real food. Rice! Veggies! Biriani! Wheee!
.. And I’ll be honest, I think one of the reasons I’ve been so bloody queasy is that the hospital food, though ‘nice’, is nothing like the food I eat at home. And it has been difficult for me to digest anyway… even without chemo to help it on its way.
So my lovelies, take care out there, and Nil Illegitimi Carborundum.
IV Bag Lady
Is that really me?
I've been off work from Monday to Thursday last week with malaria so haven't been blogging. I woke up on Monday feeling like shit. Not fit to drive to see the work doctor, not fit for the work driver to come and get me. Our doctor wouldn't send me Coartem (artemisin) without doing a blood test so I ended up testing at the local health post and as the local pharmacy didn't have Coartem ended up taking the Taiwanese anti-malaria campaigns recommended treatment of amodiquine/artesunate combination which everybody in the country says makes them feel even shittier. Still feeling it two days after completing treatment.
But that's not the subject of this post - I'm going bald! Quackery not a solution.
In the days of my father there were two hair styles for bald men. My father who went bald in his twenties chose a monk's tonsure. My English literature teach chose to grow a long wisp of hair from the side and brush it over his bald-pate (didn't fool anyone).
Since birth I have had a genetic trait (from my mother's side) of a double crown which led to taunts of early baldness. Didn't happen.
But now it's happening. Sympathy for Kezia and Rosie who lost their hair through chemotherapy.
What's the answer?
Certainly the skinhead crewcut of the '70s and '80s which typified fascist, racist thugs of the period. And certainly not the tonsure/wisp styles of my forebears.
Some (my brother and our doctor) have reverted to the crewcut (no longer so associated with fascism). So am I.
Good to be blogging again!
Friday, June 19, 2009
Or evening, or middle of the night depending on which time zone you’re in… yes, that would be me showing off at how far flung my friends are. Ahem… Hamburg, Rotterdam, Amsterdam, Stockholm, Dallas, San Francisco, NYC, Buenos Aires, Sao Tome (look it up, you lazy lot), Winterville GA (honest, not making this one up), wonderful wonderful Copenhagen – not to mention glamorous Widnes and even more glamorous Salford!Right, showing off completed – for now (he he he).
Yes, I’m checked back into my glamorous boutique hotel – er, ok, the Christie.
And for anyone wanting to visit me this week, I’m on WARD 11!
A whole different part of the hospital too, so lots of exciting new opportunities to get lost while you’re trying to find me. Although this Ward does seem to be better signposted…
Anyhow, it’s Day 1 of my treatment and naturally I am pretty perky after two weeks respite. I managed to wean myself off Buffy eventually (thank god) as my brain cells returned. You’ll be pleased to know that she did manage to slay all those pesky demons – I know you’ve been holding your breath over that one.
I even did some gardening yesterday! I find ripping up weeds and hacking at things with shears most therapeutic…
I thought I’d send an update now before the drugs kick in and I start feeling GHASTLY. I’ve just poked down a big plateful of veg moussaka with rice followed by chocolate sponge with chocolate custard (delightfully reminiscent of school dinners). I might as well stuff myself while the going’s good.
…and bizarrely, I have lost weight over the past 2 weeks – it hardly seems possible, considering the way I’ve been eating for England. I dunno, maybe chemo/cancer shifts one’s metabolism into a higher gear?
So, nothing profound or zen today folks – just sending love to you all.
Keep rubbing those lucky pebbles & sending Rudie Vibes (you know who you are), lighting candles, or crossing all crossable body parts – whatever it is you are doing, it’s working!
(Aka Barfy the Cancer Slayer)
Friday, June 12, 2009
- Money: status constant.
- Shipping household effects: status collected but no invoice yet (connected to above).
- Kezia's Santomense passport: status resolved.
- Flight tickets: booked but how will I pay? (i.e. also connected to first item).
- Check-in and immigration at London Heathrow: do I need an affidavit saying Nanda is not kidnapping our daughter?
- Arrival in Sao Tome: a friend who works for the airport authority has promised to get me a security pass into the baggage hall.
Future medical treatment: no oncologist/haematologist here, malaria, vaccinations ...
- the freezer compartment of the refridgerator has packed up.
- for a long the satellite TV decoder has been dead, the kids will expect a new one.
- had to sell two cars (one which my brother-in-law pronged). Nanda will want one.
- the kitchen sink is blocked.
The list goes on ...
But, needless to say, I need to resolve as much of this as possible before their arrival!
Take them for a burger or a pizza.
See them playing ... and play with them.
See Kezia riding her bicycle and buy Jaime a new one.
Meet them at the airport.
I want to ...
Thursday, June 11, 2009
One of the first things Kezia's consultant, John, warned us about when she was admitted to the RMCH was Internet quackery.
Fortunately, I am both well-educated (this is not meant as a boast!) and (in somethings)sensible so I only take information from cancer charity and scientific sources. And Nanda has been sensible and practical enough to follow John's prescribed advice.
It does not help from the IT data security aspect that companies (such as Google and Microsoft) are now offering to keep your health data and records online!
Wednesday, June 10, 2009
When the Nazis came for the communists
I remained silent;
I was not a communist.
Then they came for the Jews,
I did not speak out;
I was not a Jew.
When they came for me,
there was no one left to speak out for me.
Just as I was Skyping Nanda yesterday lunchtime the postman knocked on the door with ... Kezia's new passport! Another worry over their return resolved!
Tuesday, June 9, 2009
"My second job was a ‘classic’ – ‘Male collapsed in street, unknown life status – caller refusing to go near patient or answer any questions.’ So I rushed there and found two female police officers standing over a drunk male who was asleep in the street. I did all my normal checks to make sure that he was only drunk (as opposed to being drunk and in a diabetic coma, drunk and has had a stroke, or drunk and has been stabbed). Everything pointed to him being just drunk.
We woke him up and were prepared to send him on his way. He stood up – took one look at me, and smacked me in the mouth. I ‘assisted’ him onto the floor. The police officers and I then stopped him from injuring himself by sitting on him in a professional manner.
The police have been trained in restraint – they are all careful because they don’t want people dying of positional asphyxia. I haven’t been trained in restraint (well, not in the ambulance service) but I’m guessing that someone isn’t going to die because I’m kneeling over their arm
while holding their wrist.
So we carefully restrained him (for around 25 minutes), while he explained how he was either going to kick my head in or sue me. By then the police had tracked down a, now mortified, relative who came and took him away.
No damage done to me, although I would think that as he wakes up this morning he’ll have a number of bruises."
Reminds me of when Kezia was first admitted to hospital in the UK. She'd had so many needles stuck into her over the previous month it took three adults to restrain a two year old whilst the doctor tried to find a vein to get a blood sample out of her.
Monday, June 8, 2009
I spent the weekend reading it - truly excellent!
Hello darling friends,
And welcome new friends who have just joined this list!
Needless to say, if anyone is fatigued by / bored with these updates, or if they just aren’t your bag, do say and I’ll take you orf.
Right! It’s a week since I got out of The Christie following the second round of chemo – and oh GAWD have I been knackered…
So apologies if you’ve emailed me and I haven’t responded, or have drooled inarticulately at you (something I do very well, apparently).
The drugs were ‘fun’ - the first one (Taxotere – you can look it up if you’re that way inclined, I am still not going anywhere near t’interweb) I don’t really notice because it’s only pumped into me for an hour. The second one (Cisplatin) is shoved into me for 6 hours, and that’s when the amusement starts. Has the dual effect of making me barf AND sleep! Luckily not at the same time… Just when I’ve got over that I get the third drug for days and days (called 5FU because no-one can pronounce it. But it does sound something like an Aztec god) which stops the barfing, but turns me into an insomniac!
So, cue inspirational power chords on guitar and Alice Cooper yodelling Poison… runnin’ though ma veins…
It was also quite a Zen week. I shared a bay with two women, who were very similar in some ways – both in their seventies, both pipecleaner thin, both with completely ruined lungs and spent most of the day on oxygen / nebulisers.
D. was sparky, cheerful, delighted to see her visitors, enjoyed little pleasures that came her way like one of the nurses taking the time to blow dry & comb her hair, or wheeling her and her oxygen tank into the garden. She told me how she used to be a real worrier. ‘But I don’t worry about anything now. I just enjoy life.’
Then there was L, for whom nothing was enough. In the week I was there she saw more doctors, health care workers, occupational therapists, masseurs, nutritionists, family and other visitors etc etc .. and yet she still said ‘no-one ever comes to see me.’
She moaned about no-one caring about her food – despite having a special diet menu made for her. She was fully mobile (unlike D.) yet, when asked if she’d like to go and sit outside in the garden in the astonishing sunshine, her immediate response was ‘I’d never find my way there.’ When reassured someone would take her, she responded ‘I’d never find my way back.’
The joys of hospital life.
Anyhow, I am back home, and am just about vertical. Have spent much of the week watching Buffy for the umpteenth time as my brain hasn’t been capable of much else… Run, Buffy, Run!
Love and gorgeousness to you,
And here’s to lumps buggering off completely,
Recycling Radioactive Waste So You Don’t Have To
Thursday, June 4, 2009
Dr Crippen recently wrote about his reservations about this.
I have one further observation - children with immuno-suppresive diseases cannot take "live" vacccinations such as MMR so Kezia would not have been able to start school. If such a measure is indeed introduced, there would have to be exceptions.
Here children just receive the single measles jab - which is why our doctor sees so many cases of mumps.
Monday, June 1, 2009
Lux with "Youthful Essence" does explain to me whether the essence is an ingredient or a quality. I have only been using it a few days so it is perhaps too early to say if it will make me more youthful. It has an impressive list of ingredients - Sodium Soap, Water, Perfume, Titanium Dioxide, Tetrasodium EDTA, Ethane Hydroxl, Diphosphoric Acid, Olive and Grape Seed Extract, CL742600, CL11710. I'm not sure which of these is the essence of youth. As an aside, it declares "Only for sale in Indonesia". So a) the Indonesians want to keep the secret of youth to themselves and b) the is an internal soap smuggling trade.
Let's move to our "medicated" and "antiseptique" Sanitex for a "HEALTHY AND SOFT SKIN". Its list of ingredients is less impressive - Palm Oil, Coconut Oil, Fragrance, Water. I cannot see any medication there unless Prince Charles believes Palm and Conunt Oil are antiseptic.
Perhaps Drs Crippen and Rant, Boots or my local pharmacist can elucidate?
Friday, May 29, 2009
A quickie, once again!
I’m sending this partly to celebrate Geek Pride Day. No, really… http://en.wikipedia.org/wiki/Nerd_Pride_Day#Origins
.. As I am proud to be a geeky alien butt kicking vampire queen bitch from hell. Amongst other things…
Also thought I’d send you a pic of me with my Ripley-style Number 2 buzz cut. Of COURSE it’s purple – whaddya mean I can’t dye my hair just because I’ve got cancer? Pffft. The very thought. Yes, I am very aware that I look like an 80s lesbian. Which is odd, because when I WAS an 80s lesbian I looked nothing like this…
I’m back in The Christie tomorrow, so am enjoying my last barf-free day for a while. Then I shall be baldly going where no-one (well, me at least) has gone before.
Enjoy the sunshine, folks, and talk again soon,
Sick AND Twisted
Wednesday, May 20, 2009
Sending a quick message to you all… and with great relief I can report that I feel a whole lot perkier! (*burst of hallelujah chorus*)
This week I feel back to myself - which is more marvellous than I can say. A wonderful sense of being returned to the real world after the ghastly nightmare of having poison pumped into my system. And then spending a week waiting for it to go away. Luckily, the delightful side-effects of red bumpy skin, acid reflux, burned mouth, and my lips feeling like they’ve been repeatedly rubbed against a cheesegrater have worn off.
Yup, last week was an on-the-couch-watching-old-star-trek-videos kinda week.
But I forced myself to go out of the house every day – first day I made it 200 yards, then had to sit down. Next day 300 yards and DIDN’T have to sit down… the day after that made it to the post office. And so on.
And on Sunday I had a big adventure & went to the cinema! Finally saw the Star Trek movie, which was … ok. But no way would Spock snog Uhura in the transporter room. Or anywhere else. Sorry, Kirk & Spock are boyfriends, and always will be J
Thank you DARLINGS for your kind thoughts, and all the fabulous support you’ve shown – in all kinds of ways… Taking me places I can’t walk to, ringing me up, emailing, coming round to visit, buying me icecream & sushi & Jolly Green Giant creamed corn, sending me cards & flowers & pretty pictures via the interweb, sending books, dvds, or darnit, just giving LOVE.
I'm back in The Christie for my next round with Mike Tyson (ding ding) next Tuesday 26th, and I'll be stuck in Ward 4 for a week.
I shall be bald, so gear up to me looking like Lieutenant Ilia / Ripley in Alien 4 / The Borg Queen (but without the fetching bulldog clips around my forehead). Yup, my hair is finally relinquishing its hold and I am getting a buzz cut done tomorrow. I would much rather cut the whole damn lot off in one go rather than suffer the death of a thousand small handfuls every time I run my fingers through it.
If you are around at all next week, pop up & see me, make me smile! I promise not to barf all over you. Except on Thursday.
take care of yourselves out there
Prices here go up and up.
I went back to Rochdale at Christmas. The general high-street store (toys to furniture to bedding ...), Woolworths, that has existed since before I was born, was closing down nationwide. So I assumed just the local store's staff were being layed off. It turns out that Woolworth's distribution centre for the entire north-west of England is in Rochdale. 500+ people unemployed.
Rochdale, Manchester, the north-west of England in general, were never rich. The towns around Manchester relied on textile mills that gradually closed down in the face of competition from overseas.
Rochdale's high street is populated with charity shops - shops staffed by volunteers with goods donated by the public. Nanda tells me they are closing down - the public cannot afford to donate goods anymore.
"What an odd thing a diary is: the things you omit are more important than those you put in." (Simone de Beauvoir)
What is the difference?
As I mentioned in a recent post I am reading Fridjoft Nansen's "Farthest North" - a day by day account of his 1890's expedition to the Arctic. It's 600 odd pages long in a very small font so I'm only halfway through but am enjoying it thoroughly.
Living a life of a bachelor, the house has become a bit of a mess, so in anticipation of the arrival of family, I've started clearing up a bit (although I know however much I do Nanda will not be satisfied!). Tackling the living room dining table (covered in computer magazines, books, technical papers ranging from Linux to marine crustaceans to orchids), tackling the mess of the kids' bedroom etc etc.
But I come across handwritten diaries in the '80s before I had a computer. And I start reading them. Memories ...
People I don't remember, people I remember but lost touch with years ago. Events I don't remember.
So what is the difference?
Well, unless google goes bust and its blogging service comes to an end, our blog will last forever. Even then, there's a good chance it will get stored on one of the Internet archive projects that have sprung up.
One day, my old paper diaries will be lost, eaten by bugs or destroyed in a fire (unless Iwas to transcribe them into a "blog" now - an awesome task! And would it really be of interest to anyone? As it is our blog only gets 30-50 hits a day and most of those are the posts on hacking BBC iPlayer from overseas!).
Nansen's Arctic journal reads like a blog, and given its unique theme, makes it read like a very good blog - much more interesting than my own random jottings about whatever comes into my head. Even Drs Crippen and Rant, Tom Reynolds (except when he starts writing about computer games!) stick to a theme. Although our blog initially had a predominant theme, Kezia's luekaemia, now she is off-treatment, it talks less and less about leukaemia - I have little to report, the results of periodic and increasingly less frequent medical examinations.
Rob, father of Fergus, optimistically started a new blog when his son came off-treatment.
But this blog will continue with the name "Life with Leukaemia" - as the doctors will not consider Kezia clear until 5 years have passed. I am not so optimistic/confident and this blog will continue with the same title for five years, when I might change it to Life after Leukaemia.
Another difference - back in Nansen's day few diaries were published and few bought. Literacy rates were much lower. Book-shops less ubiquitous. Money was perhaps tighter (... but given the current economic crisis!).
... which will lead on to the next post!
Monday, May 18, 2009
By the time you swear you're his,
Shivering and sighing,
And he vows his passion is
Infinite, undying -
Lady, make a note of this:
One of you is lying.
They hail you as their morning star
Because you are the way you are.
If you return the sentiment,
They'll try to make you different,
And once they have you, safe and sound,
They want to change you all around.
Your moods and ways they put a curse on;
They'd make of you another person.
They cannot let you go your gait;
They influence and educate.
They'd alter all that they admired.
They make me sick, they make me tired.
GENERAL REVIEW OF THE SEX SITUATION
Woman wants monogamy;
Man delights in novelty.
Love is woman's moon and sun;
Man has other forms of fun.
Woman lives but in her lord;
Count to ten, and man is bored.
With this the gist and sum of it,
What earthly good can come of it?
So, although Kezia entered the UK on her mother's passport and now has a UK passport, we thought it wise, particularly as her appearance has changed so much in three years, to obtain a Santomense passport for her to facilitate check-in and immigration at Heathrow when they return to São Tomé e Príncipe at the end of July rather than getting a visa put in her UK passport.
So we duly wrote a letter, sent off her "Cedula Pessoal" (a kind of identity document for kids which is also a record of vaccinations etc), passport photos and transferred 40 Euros to the bank account of the nearest Santomense embassy which is in Brussels. They issued and sent off a passport the day after everything had arrived (March 18).
We waited and waited ...
Eventually, I asked the embassy to make enquiries at the Belgian post office. They said it had arrived in the UK.
We waited a bit more.
Then my brother enquired at our local UK post office. Nope - no trace of it.
We waited a bit more.
Then I went to the UK post office "Track and Trace" service website and ... nope you cannot "track and trace" incoming international registered mail. But they helpfully provided an email address for their Customer Services which I duly wrote to - only to receive the response that the originating post office must conduct the search.
So I look up the Belgian post office website which helpfully also has a "Track and Trace" service (in English even!), type in the registered mail code only to find the message "Dispatched 18 March. Arrived in foreign country".
So I send a screenshot of this and message back to the UK Royal Mail Customer Services Representative (at a "call centre" who knows where).
And we wait a bit more ...
Friday, May 15, 2009
I am a white male in his 40s living in a very small African island nation in the Gulf of Guinea, where I ended up having wandered the globe for several years.
Jo, the coordinator of Papillon, a support group in the UK for African and Afro-Caribbean people who have been on the receiving end of sexual abuse and which meets at the Terence Higgins Trust HQ, the Lighthouse, in London, has asked me to write about sexual abuse for the Papillon website ... and I don't really know where to start as there are at least three aspects the sexual abuse of children I want to cover ...
a) my own experience within my own family
b) sex tourism
c) African abuse of children - sexual or otherwise
Since Jo approached me I have talked with several people here and, even outside the war zones of Africa, the sexual abuse of children in Africa is more common than widely assumed.
I will start my list above in reverse order. But first let us do away with some common assumptions ...
The age of sexual consent, whether hetero- or homosexual, is not uniform across the world. In the UK 16 year olds can have sex, get married, cannot buy alcohol, drive a car or go to the cinema to see an over-18 rated film or vote. In other countries homosexuality is forbidden (sometimes a capital offense), the age of heterosexual consent lower, arranged marriages permitted etc etc. However, the age of heterosexual consent is generally considered to be no lower than the age at which puberty sets in. Post-pubescent homosexuality is linguistically defined as pederasty, and, although it can be equally as damaging emotionally and psychologically as the abuse of pre-pubescent children, paedophilia, should not be confused with the latter - let's say the age of heterosexual consent is 14 ... is that paedophilia. However, if it against a person's consent, then it is sexual abuse.
But the sexual abuse of pre-pubescent children happens.
The spread of the Internet has led to the widespread distribution of paedophilic material (mainly photographic), both hetero- and homosexual. And this has led to far more prosecutions of (non-IT savvy) paedophiles who leave a data trail behind them.
Not so in the developing world where the Internet structure is so much weaker, , where most people don't even have a telecom connection, where most people don't have access to a computer.
The use of child "soldiers" in Africa is widely reported. A typical case is the Lords Army insurrection in northern Uganda (spilling over into soutern Sudan and the D. R. of Congo - and just in case it has passed your attention the Lords Army is a barmy quasi-religious movement led by a barmy self-proclaimed "Messiah"). Less-reported is the sexual and other abuse (drugs, violence etc) that these children suffer.
But let me move closer to home where we don't have civil strife, wars, famine etc.
On Sunday, very kindly, a colleague who I will refer to as R. visited me at my invitation to talk about the sexual abuse of his six year-old daughter by a 17 year-old neighbour. I remember when it happened - he was, obviously, angry and upset. But there is effectively no criminal justice system for "minors" here and no penal institutions for minors. The guilty party walked away scot-free.
Making headline news in a local newspaper last week was the case of 70 year-old French citizen resident here accused of sexually abusing teenage girls. No real proof - latest heing he pissed off the local police who invented the case. Who knows?
Which leads me on to Subject b) above - Sex Tourism.
Several European countries have now passed legislation whereby an abuser can be prosecuted in their home countries for sexual abuse of children in overseas countries. Until now this has mainly involved abusers who have travelled to SE Asia to procure sex with minors.
It happens in Africa too. Less European tourists come to Africa than SE Asia. The police systems are weaker, the judicial systems are weaker, the penal systems are weaker than in SE Asia..
But it happens.
Which will now leads me onto a) my own experience within my own family.
"I almost didn't marry your father when I discovered he had two full plates of false teetth" (as well as a bald pate and a pot-belly - not a very physically-attractive character - but I think she was dazzled by his intellect).
But this was a euphemism - she knew he had served a prison sentence (of, I believe, one year) for sexually abusing two boys he had been tutoring. Not sure when this was. He was born in 1922 and so became a legal adult in April 1940, soon after the beginning of World War II. He studied for his B.Sc. in chemistry at the University of Aston, Birmingham at night school and mostly definetly served as a Gas Identification Officer going out after German air-raids to see if any of the bombs dropped contained gas and giving lectures to other home service workers about gas (I well remember all the paraphenalia stored in the attic - including a kit of samples containing mustard gas etc for his audience to smell!).
The story goes that he worked in a "protected industry" - a factory producing paint for the armed forces. However, my aged but youthful (in her 80s but still drives and recently got hooked up to the Internet - she is a story/post to herself) Aunt Gwen recently related to me how he mysteriously disappeared for a year during the war and then just reappeared one day - so even though I had assumed the sexual abuse offense occurred in the early'50s before my parents married in 1958, it was probably during the war ... and with a criminal record, was considered unfit for military service (though I doubt he would have passed a fitness test!). I later learned that, as family worked for the local newspaper, a report of the conviction was suppressed.
I learned of his paedophilic/pederastic/incestuous tendencies in the '70s. My father was into amateur photographic processing - we had an improvised dark-room with the right chemicals, an enlarger etc. Rolls of negatives lay in a bowl on a shelf in the dining room. I invited a friend home for tea after school and waas showing him these roles of negatives.
Suddenly, holding a strip of negatives up to the light, I see an image of a 15/16 year old boy, the son of family friends of my parents, naked in woods near our town. I quickly roll up the strip of negatives, hoping my school-friend hasn't seen it, and after he goes home and before my father arrives home from work, confront my Mum.
And then slowly I begin to wonder ...
"Why did my father sit me on his lap when I was a young child?"
"Why did he come into the bathroom so much when I was taking a bath as a teenager?"
"Why did he touch my leg so much when he was giving me driving lessons?"
What else happened that I may have mentally blocked out?
Monday, May 11, 2009
Update from Rosie ...
Hello darling friends,
I just wanted to say an amazingly big thank you for all your wonderful messages of support, love & general Birthday / Barfday celebration!
I've been quite blown away by the flowers, cards, pictures, chocolate, cake, apricots, booze, & pretty pictures of corsets you've sent me over t'interweb & in person.
Not to mention cheering up Ward 4 with glamour & gothicness in the shape of your dear selves. & thanks for understanding how fast I got tired.
I keep telling myself this can't possibly be the NHS: not least when all the staff on the ward yesterday brought a cake in to me & sang happy birthday. Here's the picture to prove it... me and my Borg Implant & my cake!
You are dear & lovely friends.
I should be ill more often, really, if it gets this sort of response...
As for today, my new and exciting symptom is feeling like I've been duffed up in a dark alley by a gang of skinheads. Aaargh..
Hurrah for painkillers!
At least I don't feel queasy... I can deal with anything but queasy...
And I had chips for my lunch & baked beans on toast for breakfast. Bring it on.
love & stuff
Thursday, May 7, 2009
Wednesday, May 6, 2009
On a Wednesday in May 2006 we are told Kezia is really sick. São Tomé e Príncipe citizens have the right free medical treatment in Portugal for conditions untreatable here - but the bureaucracy of arranging the medevac can be a kafaesque nightmare however dire the emergency. So the reply is "No you need to go IMMEDIATELY!"
I rush down to our local travel agency- not a large concern, but with branches in three countries - to see if I can get us on the Saturday morning flight to Portugal and then onwards to London. I explain the situation - no problem - I book myself for a week and Kezia and Nanda for a month - payment? "Ach! - pay when you get back!" Taking Jaime over six months later - 50% upfront, 50% on my return (and even then in installments!). The same for every trip I have made to the UK since.
Our Honourary Consul liaised with my embassy x miles away in Angola to get Nanda and Kezia permisssion to enter the UK without a visa and at no charge. (unfortunately, he is no longer Honourary Consul - the Portuguese Embassy now deals with all EU nationals - I hate to think how that would have been!).
Our local shops (really the term should be kiosks but they sell all the essentials) extend tick - useful at the end of the month when money is tight!
The privately-run canteen at work extends me tick.
And if I ring the bank before it closes and tell them how much I need, they set aside enough cash for me to conduct my transaction at 16:30 - otherwise I would use all my annual leave going to the bank!
This would not happen in the UK, nor most countries.
Only in São Tomé e Príncipe!
I'm feeling really good, having had 5 hours sleep (excellent result, considering that the woman next to me has a snore like builder's rubble being poured down a drainpipe).
In fact I'm feeling much better than I was expecting to (or warned about) - so there's a good chance the sickness/nausea I was told I might get ain't going to happen to me. Yes, early days, but make the most of 'em. I've just poked down a roast beef & Yorkshire pudding dinner following my vast bowl of porridge & banana for brekkie, so I may end up being the first woman to go into the Christie & come out fatter then I went in! Loss of appetite? What loss of appetite? *polite burp* Yeehaaar!
Sooooo.. with that in mind...
It's my birthday on Friday (I think all I need is a megaphone on top of the CIS building then the whole of Manchester will know)
and People have asked if I'm up to visitors - and I say YES.
visiting hours are 2pm-9pm,
I'm in Ward 4, The Christie Hospital, Wilmslow Road (just past the end of Withington Village, if you are driving south out of Manchester.
I've also asked, and been told that if there are more than 2 people, I can take you into the Day room, where there are chairs, tables etc and more room to quaff sparkling grape juice / appletiser and er...cake?
I've also asked to convert the corridor into a bowling alley, the large bathroom into a jacuzzi, and have tassel-twirling burlesque dancers on tap. Not sure how far I'll get, but one does have to ask...
If you'd like to come in and see me, I'd be delighted.
If you're not sure, do email me, this stuff is free & it's helping stave off the cabin fever.
Love to you all,
(the glow-in-the-dark vampire... I don't have to stay away from crowds - they have to stay away from me)
and thank you to the lovely poetry friend who describes hospital as a trip to Button Moon!
I'm finally here - arrived at 9am and they got me a bed at 4.30pm. 4.30!!! So, much sitting on my arse today. Thank the stars for the free wifi here - I think I'd have been throwing machines that go bing out of the window otherwise...
I'm hooked up to a drip and that is how I'm going to be till next Sunday night - can't leave the ward, and I have to pee into an eggbox - they want to collect my wee & look at it (perverts).
I have a nice window bed, but not the ensuite 4 star spa and sauna package I am sure I ordered...
But everyone seems nice & friendly and I am getting used to dragging a drip machine around with me wherever I go. Rock, and indeed, Roll.
Did my last gigs for a while on Saturday night in Leeds at the fabulous Slippery Belle (what an audience!!), and even last night (Monday) at the Grand in Blackpool. Well, what else was I going to do the night before going into hospital? Stay in and watch telly? It was a wonderful tonic to put on the slap & work an audience up into a frenzy. Wheeee!
Sadly, I've been told I must stay away from crowds, so not only am I spending my birthday in here (this Friday she hinted) BUT when I get out I can't go & see the new Star Trek movie! booooooo. For those of you who already think I'm weird enough, yes, I am a Trek fan. Geek & proud!
Enough, must go & hobble round the ward again like some goffik bag lady.
talk soon, and BIG love to you all,
Tuesday, May 5, 2009
This post is not you may imagine about Jaime and Kezia's school in the UK, which sent a teddy bear to Jaime's old primary school and which I and my boss Ken presented to that school last week ... but between that school (officially the Escola Primaria Januario Graça) in our local village Capela and the nearest primary school to my workplace in the village if Almas down near the coast (Escola Primaria Manuel Vaz).
Two or three years ago the Republic of China (more usually known as Taiwan with which we have diplomatic relations) renovated the primary school in Capela adding three toilets to an existing two as well as sinking a well withe electric motor driven pump.
Back when I worked for the Ministry of Education, myself and a colleague setup an English Language Teaching Centre to provide resources for the local English teachers - we even got the Americans to finance a photocopier and a Gestetner machine - but a ream of paper, a toner cartridge etc - fuck off!
If it is not a big capital project to be shown off to the taxpayer/voter back home, bilateral donors are not interested.
I walk, I talk
but nobody cares
I walk, I talk
but nobody hears
I walk, I talk
but nobody's there
And if they are
they give me
the parachoke stare
I don't know where
Everywhere I go I get
the parachoke stare
Don Van Vliet 1978I
Wednesday, April 29, 2009
On Monday Jaime received his school's "Childer Award" (basically a Student of the Year award). Each school in the local education authority nominates a student to receive the award and yesterday was Meanwood's turn ... and Jaime had been selected to receive the award. The scheme is sponsored by the Round Table. I asked Meanwood Primary School to also present Kezia with something ... otherwise ... well, if you're a parent you'd understand ... which they did. The school was shown Ken's photos from Capella Primary School here in Sao Tome where Jaime attended first and second class and which was presented with a Meanwood International Teddy Bear last week. As Ken kindly accompanied me to Capella Primrary School last week to present the Meanwood Bear and a big jar of Voice of America sweets, we sent an article to the VOA blog yesterday and it was immediately published. Below some photos and the Meanwood school director's speech:
"For me, this is one of the best days of the school year because it is an opportunity to focus exclusively on something positive. Every year, when it’s time to select our Rochdale Childer Award winner – I am delighted by the stories that it uncovers.
This year’s winner has been a unanimous choice by all those involved because his achievements and personality deserve recognition and reward. It is a wonderful story of courage and perseverance which I am thrilled to say has a happy ending.
In November 2006 a little boy joined our school in Year 3. He came from a small African country, where the weather had been very warm, his school had been very different from ours and everybody spoke Portuguese. Imagine how frightened he must have been, finding himself in a strange cold land where everybody is speaking a language you can’t understand!!
He came to England with his Mum, Dad and little sister. Dad is from England and speaks both Portuguese and English so was able to help the family to settle in. Mum spoke very little English and must have found everything just as confusing and frightening as did her son, particularly when Dad had to return to work in Africa leaving the family behind.
As if this wasn’t enough to cope with, the family had returned to England to access treatment for the little girl who had been diagnosed with Leukaemia.
Throughout all these trials and tribulations our winner kept working hard and most remarkably kept smiling. He is a truly lovely boy who is an exemplary pupil and a joy to have around.
His determination and commitment to hard work have earned him the respect, admiration and affection of all with whom he comes into contact. He has made amazing progress with all his learning and now speaks English fluently and all achieved in 2 and a half years!!!
The good news is that his sister’s treatment has been successful and she is recovering well. The bad news, for us, is that the family now feel that the time is right to return to Africa. Whilst we shall be tremendously sorry to say goodbye to them, we must be content that the story has a happy ending.
Our winner today, if you haven’t already guessed, is Jaimie Lima.
We mustn’t of course forget his sister Kezia, who also has greeted every difficulty and barrier with a smile. These are two very remarkable children who we have been privileged to have as members of our Meanwood Family."
In June they go to a reception at the Town Hall.
I am an immensely proud father!
Monday, April 27, 2009
Where do these doors go? C. S. Lewis wrote the marvellous series of moral fantastic stories for children generally known as the Narnia series whereby a group of children discover a door in the back of a wardbrobe that leads to the world of Narnia where they experience a series of adventures involving wicked witches, cenataurs etc.
So where do these doors go?
Or do you get drunk on a weekend, walk out for a piss and ...