Sunday, July 10, 2005

Woke 4.45 to hear the dog downstairs, barking to be let out. This is unusual: he sleeps in our room, and usually gets up when I do. I heard him bark twice, and thought perhaps my husband would get up. After all, I only had 2 hours sleep the night before, because our daughter was ill. But no. So I got up, realising I had a sore throat, and in all likelihood was going to have the thing my daughter had.

Thus it was that I got to see the sunrise, which was for a few minutes, the most amazing sight. In our house, we have brilliant views of the sunsets, but I don't usually get good views of the sunrises. Our hous is on a hill, which is such a gentle slope that until I had children I didn't really realise it was a hill. The back of the house looks down the slope, and there is a good open area where the sunset can be seen. The front of the house is overlooked by houses above, on the opposite side of the road, and they block out the sunrise.

This morning the sky was covered in cottonwool clouds, and it looked exactly as it would if you had taken a rool of cottonwool and eked it out across the sky. The underside of the clouds was highlighted in candyfloss pink all over the sky. It only lasted for a few minutes and bodes badly for the weaher today.

It's warm, and I cam hear the thrum of the fans in the children's rooms. I am sitting here in my dresing gown, but I think I will shrug off the top and sit here naked from the waist up. The heat is oppressive already.

I am drinking Fanta for my throat. I don;t usually drink soft drinks other than water, but we have some big bottles of Fanta bought for the children, and I just fancied some. I am worrying about the effect of this bug on Ali already. His Crohn's disease may flare again if he gets this bug.

Friday, July 08, 2005

Feeling oddly lucky today. I went up to Great Ormond Street hospital on Wednesday with my son, travelled on the underground, walked and taxied around the Russell Square and Tavistock Square area. Fate's an odd thing.

We waited in the Costa Cafe for Ali's x-ray appointment, and the announcement for the Olympics bid was playing on a flat screen tv on the wall. I am renowned for my disdain about sport being the opium of the masses, having replaced religion, and I find it hard to care about sporting milestones, or sporting success.

We say that Sky said that the announcement was imminent, and watched as the two Singaporean presenters awkwardly complimented one another upon their appearance and introduced the announcement. I had bought a sandwich and a coffee, Ali had a soft drink, and we watched as they announced that they would play the promotional films from the five cities remaining in the race.

Paris had a very upbeat film, all primary colours and smiling people, obviously produced by an ad agency.

New York had, by contrast, a very sombre film, all black and white and no sport as far as one could see - sights of the city, a musician, very downbeat and dark.

Moscow's was different again, small snippets of film, which appeared to include thank yous to all of the other cities bidding for the games.

Madrid's looked oddly amateur, with talking faces suddenly projected from the screen, overlaying the city panoramas. We couldn't hear what was being said by the scary big heads.

Although I am partisan, I would have to say that I thought London's was the best of the films. There was music, there was a story which didn't require you to speak or understand English, and there was the idea that ordinary people could do extraordinary things. I thought it stood head an shoulders against all but the Parisian film, and had more heart and soul than any of them.

We were keeping an anxious eye on the time, as we didn't want to have to leave without knowing what had been decided. Then they appeared to announce that the announcement was coming...and then three opera singers started to sing. There was an audible groan from the considerable crowd which had gathered to hear the announcement.

The singers finished, we were on the edge of our seats...and the camera focussed on a girl who was holding a cushion to enable her to carry the envelope with the result to the President of the IOC.

We waited with baited breath as she crossed the stage, and then the President bad her stand by while he said a few words...another groan escaped the crowd.

At long last, he took the envelope, opened it, and announced that the Olypiad would go to the city of...
...London! there was an involutary cry of YES! by all in the cafe, including me, and including the woman who, moments before, had said that it would be a nightmare were the Olympics to come to the town.

We finished our appointments, walked away from the hospital, to find a cab.

The next day, I listened with growing alarm as the reports of a "power surge" seemed to affect moe and more stations...when a bus exploded at about 9.45, it was clear that there had been a terrorist attack. I thought about the people gathered in that cafe, all jubilant that the Olympic were coming to London. How many of them were caught up in the horror, trying to get to work?

How easily we fall into terrible circumstances, and how easily we escape. A missed bus can save your life...a missed bus can cost you your life. Hitting the snooze button can save your life...hitting the snooze button can cost you your life. And no-one can know which will be which.

I went in to SL to a barrage of IMs asking if I was OK. Made a candle and a poem as a memorial to those who died. I can't bring the candle here, but I can show you the poem.

Spirits rising
They left expecting ordinary days
Instead found they were going on a different sort of journey
They left their cups of coffee and unpaid bills
Stepped out of their homes and away from their lives
And can't return
Instead their souls set free today,
In darkness and confusion,
In smoke and pain,
Soared away from their broken bodies
Into a life beyond
Light a candle for their friends and their families.
Light a candle for their children...
Their wives and mothers...
Husbands and fathers...
Light a candle for the loss
But their souls were set free today
Into a life beyond
The people in real need of light,
Of prayers and illumination
Set those bombs

Sunday, July 03, 2005

Today has been one of the most embarrassing days of my life. I have to make a confession, and I am not sure that even now, a week later, that I am equal to making it, because the cringe-making aspects of it linger. But here goes....

We have been living next to some lovely neighbours. They rent their house, which actually belongs to one of the local churches. In times gone by, the vicar or pastor or reverend for the church has lived in the house, but their most recent vicar already has a house fairly locally. So the church has rented it out.

I have to say that the church makes a pretty unchristian and thoughtless neighbour. Where one would be able to ask a neighbour what their plans are, or talk to them about trimming the hedge or killing their vermin, a church is pretty difficult to talk to. At one point they let the house to a pair of drug dealers who roared around town late at night in their flash cars, and had noisy and terrible parties going on into the early hours and beyond.

These neighbours are American and have been understanding about the noise and mess of a three child house. In return, my daughter has regularly jumped over the fence to let them in their own front door, as they have regularly locked themselves out at the front.

We were out on Friday when the family made contact, told my husband they were going back to the States, and said that they had a few electrical things they couldn't take back to the states, would be like them. He said yes, and agreed to go round later than evening, but they weren't there. They came around later with a stereo which the children fell upon with delight.

They told us they would be leaving more stuff, some flower pots, a couple of rugs etc, at the front of the property and we should help ourselves. We said goodbye.

The following day I arrived home to find a rug I didn't recognise on the floor. They had indeed left a lot of stuff out at the front, about 20 black bin bags and some loose husband had said that he would clear the black bags and he took the items they left.

My sister asked what was in the black bags. I told her I had no idea. My son told me that there was something interesting in one which looked like a rucksack. We decided to have a quick look before we took the things to the tip.

We found...
5 laptops, 30 ethernet cards, one leather rucksack, a blow up bed, a battery-powered inflator for said bed, a shoe box full of hotel toiletries, a clip-on spotlight, a table lamp, a door mat, a runner rug, a (new-looking) computer printer, a hold-all and a leather folder with notepad....

There was a lot more, but we didn't want to be intrusive and sort through personal items, at least, I tried not to do anything which I wouldn't like anyone else to do to me. I didn't look at the papers and correspondence, for example.

On Sunday my son went out to War Hammer, and I was typing on the computer. There was a knock at the door and I ran downstairs in my decorating clothes, no bra. I was expecting it to be my son.

The couple were standing on the doorstep. They had a card in their hand. They had come to say goodbye, and were clearly expecting an invitation to come in and have a cup of tea. But I couldn't! in my living room were 5 laptops...30 ethernet cards...etc

As I talked to them from behind the door, I became exquisitely aware that I was standing on a doormat (rescued from their bin bags) with a runner rug behind (rescued from their bin bags) my leather rucksack on the stairs (rescued from their bin bags) and a box of three soaps (rescued from their bin bags) sitting on the hall window ledge.

I nearly died with embarrassment as they told me how grateful they were that John had taken the bags to the tip and they handed me the card. I don't know what I said, I was too embarrassed to make sense. I think I have post traumatic stress disorder now. I keep getting flashbacks.

I muttered, said goodbye, good trip, and shut the door, and sank to my knees. AAARGH

To make matters worse, the card contained vouchers for Marks and Spencers and kind words. I may even be able to look at it without blushing by 2008.

My mother keeps never have to see them again...they did say that they wanteed you to feel free to help yourself to never have to see them again. It doesn't seem to be an effective treatment, I'm still getting the flashbacks.

Monday, June 27, 2005

Up at 5.30am. I just can't sleep, am on worry overload at the moment.

Last week, I was worrying that the hospital were planning on operating on my son without checking how the stricture he has is doing. He was admitted to hospital at the end of May with high inflammatory markers, pain and vomiting. Things had settled down fairly quickly, but not before he had had a barium enema showing a stricture.

He has active inflammation at that point, and so I was glad that the surgeon ordered a barium follow-through, thinking this would show what was going on, whether the stricture was improving or getting worse. Unfortunately, when we arrived at the hospital last Monday, it became clear that they were only going to look at his small bowel, to ensure there weren't any other problems going on, and they didn't plan on looking at the area of the stricture again.

He was really upset, thought that if there had been any improvement, the first time they would find this out, would be when he was on the operating table, and it was too late. I phoned the consultant from the internal phone on the reception desk, but got a very obstructive and unhelpful secretary who was very unhelpful.

"What do you mean you want your son to have other tests? Have you seen the surgeon?"
"Well yes, but when he said that he was ordering a barium follow-through, I thought in my ignorance that this would show the area of the bowel where the stricture is."
"So...does he think the operation is necessary?"
"Well, obviously he does, or he wouldn't have scheduled it."
" disgree with him?"
"No, I am not saying I disagree with him, just that I think it would help my son to be reconciled to the fact that it is necessary if he felt reassured that they had checked that the stricture hadn't improved. We thought they would check that today; they aren't going to."
"So...did the surgeon say it was necessary to check it?"
"No, obviously not, because they aren't checking it. But I would have discussed that with him if I had understood that."
"So...what are you asking me to do?"
"I would just like to ask for some sort of test to reassure him that the surgery is necessary...maybe an ultrasound, as the narrowing has shown up on the previous ones?"
" want me to ask if he can have an ultrasound, even though none of the doctors think that is necessary? I just want to be clear on what you want...."

AAAARGH. She wasn't rude, but she made it perfectly clear she thought I was being ridiculous, and somehow managed to convey a sense that I was being unreasonable and demanding as well.

I waited to hear from them and nothing happened and so I contact the PALS people. These are the Patient Advisory and Liaison service in the hospital. I wasn't optimistic.

I sat on the local Maternity Services Liaison Committee at the local hospital for a couple of years, and also on the Patient Panel locally. A friend was chairman of the local Community Health Council too. I gradually became more and more sceptical that these committees actually achieved anything - I thought they spent a lot of time patting themselves on the back and achieving very little.

An example: the sub-committee which had been formed to look into seasonal bed shortages reported to the patient panel. There was a long report, with a lot of figures, and they declared their committee's investigation a success. I looked at it, and it appeared to show that seasonal bed shortages were worse than ever, and the sub-committee has provided no solutions to that problem, and had effected no change in the situation. I asked by what criteria they judged it a success?

I got some old-fashioned looks and a lot of shifting in their seats. Normally it seemed that they tended to pat each other on the back for a job well done, and didn't consider whether the committee had achieved what it set out to achieve, or had changed the experience on a single patient. They had successfully gathered information and report back with it. That's why they were a success. I found the people generally to be obsessed with their own pet subjects, self-satisfied and unable to judge objectively what was going on.

The only people who seemed to be looking at things the way I did were the Community Health Councils, who did seem to me to gain a pretty good overview of what was going on in their areas, and to be committed to changing those things which needed changing. I was pretty pessimistic when the government disbanded them all in favour of Patient Advice and Liaison Services within hospitals. for a start I thought it was unlikely that the PALS services would have the required independence to be able to investigate internally, and I was also pessimistic that no-one would have an overview of the services in an area any more.

I am still sceptical about that - I think that the government aimed to reduce the amount of critical responses it gets to its changes in health care. But as for the second, I have been pleasantly surprised.

The PALs in the hospital took up our case very quickly, talked to the people concerned and said that there was some merit in what we said. They agreed to cancel my son's operation and to do some more investigations and I heaved a sigh of relief. My son was also more relaxed and happy than he had been since they talked about operations.

So...we are due back for another barium enema, and of course, he has started to flare up again, and now I am worrying that I did the wrong thing. Had I not interfered, then he would be scheduled to have his operation in less than a week. As it is, we are supposed to go in this morning, but if he is flaring again, then the likelihood is that the stricture is still there and as bad as it was before.

It is difficult to know who to go to because he seems to be caught in a no-man's land between medical and surgical which means that he has two sets of consultant, registrar and a medley of House Officers and Senior House officers, all involved in his case.

He is feeling ill, was hot last night, and I have no idea if I will be doing the right thing to take him in for the test or not. He has diarrhoea, and that will make the train journey difficult and stressful. Bloody Crohn's disease...I hate it.

Add in the fact that our financial problems seem to be getting worse and worse, and you will see why I am up and typing into this Blog at this time in the morning. Hell's teeth.

Friday, June 24, 2005

What I love about being online, is the connections that I make. A few days ago, I took on the job of making an avatar for SecondLife of the main character in Cory Doctorow's "Someone comes to town, someone leaves town". In the course of the making, I visited the website of the author, and realised what a very interesting man he is :-).
Not only that, he's releasing this novel on the internet for free at the same time as it is published in recycled trees...and there is a creative commons agreement that people in the developing world may take and use his work for free. You can see more in the link above.

I am also very impressed by the artist who made the cover of the book, and have been visiting webpages to see other examples of his work. Dave McKean is his name.

A couple of weeks ago, I made another avatar, for one of the people attending the Supernova conference...and in looking up photographs of the man, found information about his work into "The Media Equation: How People Treat Computers, Television, and New Media Like Real People and Places (Cambridge University Press). " Also fascinating.

Unfortunately, I am beginning to feel that my life is going to be too short tobe able to do justice to all the connections and links I am finding to things that fascinate me. I think it is my blessing and my curse, that I am interested in almost everything and can imagine myself working in many different environments. It is a blessing, because I am rarely - strike that - never bored. I always have things I want to do, read, visit in my head, and I am usually very excited by something I have been thinking or reading about.

It's been a huge asset when home educating the children, because there are very few subjects I don't feel interested in, very, very few. It was also an asset when I was working as a writer for Lloyd's Register, because I was able to throw myself into any story I was asked to write about, and find the contents fascinating.

On the other hand, it makes settling into one direction very hard indeed. I played the piano for a party at the meeting house a few weeks ago, and people are still coming up to me to tell me how impressed they were with my music. (I had composed the music which I played). Many of them have said that I ought to investigate publishing it. But I also make jewellery, and have often had people say to me that I ought to investigate having my necklaces made commercially. And I have written professionally. And I love family history research and would love to do that for a living. And I am very interested in health and especially a fusion between conventional and alternative forms of healing. And I am interested in education, and would like to write about alternatives to the current model of state-funded huge secondary school.

When I pick up a paper, to look at the jobs, there are very few I can't imagine myself doing. I am articulate, literate, numerate, have common sense, and I work loyally and hard for any company which employs me. I am intelligent and a good manager, and I love being responsible for a department when I was working full-time, before I had the children. I find that the huge variety of choices makes it hard for me to choose to go in one direction or another... it has lead to an almost total inertia.

Not quite, though. I have been commission to write a guide to Second Life. The company I found produces guides to a large number of games, and doesn't do one for SL at the moment, and so I pitched the idea to them, provided an outline table of contents, and they bit. So that's why I am writing that at the moment and not this blog....
Well...hmmm it has been a little while since I updated this web journal. I see that one of my friends from SecondLife has started a journal, made two entries and run away, and that seems to be par for the course for a lot of Blogs. I think part of the problem is that people realise that if they are identifiable, it becomes very difficult to avoid revealing other people's secrets in a blog. I think a few days down the line is usually when people start to realise things would be so much easier if only their blog was anonymous, or at least unfindable using a search on their name.

I don't have any excuses really...i just forgot. Things have been a might stressful around here, and so I haven't updated...and now there is a lot of catching up to do....

Perhaps I should just start where I am at the moment. son was due to have surgery at the beginning of July, but that has been postponed in favour of further tests. My husband, after not drinking for a year, has decided this means he isn't an alcoholic and he can drink again. I found the half empty bottle of gin, and we had a short conversation before he poured it down the bathroom sink. I told him I wasn't up to a full-on row while we are so worried about our son, and so he has agreed to stop drinking for three months so that we are past this difficult part.

Our financial situation hasn't improved in a year, and is exacerbated by the fact that along with the gin bottle, J has been concealing the post. I borrowed some money from my father which helped pay off the worst in the past couple of months, but our financial situation is not helped by the fact that the company that J does most of his work for tend to be rather backward in paying up the dosh. They have excelled themselves this month by not only not paying up on time, but by deducting costs which have been paid to barristers which ought not to have been and deducting a larger percentage than had been agreed.

It is really getting to the point where we might be better off on benefit. I have applied for some jobs, but the logistics of home educating, and being there for my son if he does have to go into hospital, have made it quite difficult to see how I can do it.

I also feel quite resentful that J has a profession and qualifications and yet seems content to sit around waiting for work to fall into his lap.

Got to go - I am being pushed off the computer. Will try to do this first thing in the morning in future, which should prevent interruptions :-).