On March 20th 2002 at 00:30 my mum was rushed into the John Radcliffe
Hospital with acute myeloid leukaemia (aml). This is a journal of our
fight against the disease and all things in between. What's written will
sometimes be happy, sad, distressing, and occasionally mundane.
She was in remission until March 2004 when the disease relapsed. In July 04 she had a
non-related bone marrow transplant. So far everything is going well and she has returned
to full time work.
Originally mum was meant to trek The Great Wall Of China. However due to the leukaemia relapse I went instead.
We raised £4124.40 for the Anthony Nolan trust. But that's only the beginning, in November I shall be trekking in the jungles and mountains
of Mexico to raise money for the same charity.
Today was her follow up appointment after seven days of taking steroids. Although there was an improvement in her condition the result wasn't the complete loss of pain and discomfort that had been promised. And as a result they aren't convinced it's the polymyalgia rheumatica which for mum is a reliaf in many ways, however whatever the decision had been she wouldn't have carried on with that particular course of treatment. So they've decided to take more blood to double check the results, revisit the ear scan and refer her to a rheumatologist. And she goes back in two weeks to see the head honcho in haematology. So it's really a case of watch this space. In the meantime she has been given anti-inflammatory drugs and another drug to protect her stomach lining from them.
An Interesting Discovery...for me at least
At least 220,000 people died in the explosions when the USA dropped two nuclear bombs over the Japanese cities of Hiroshima and Nagasaki bringing the Second World War to an end. The main justification that I have heard is that far more would have died ending the war in a conventional manner and in many ways I think the exponents of this are probably right.
"Every time you have an x-ray, for example, the safety data used to set your dose of radiation can be directly traced back to the events at Hiroshima. Likewise for patients receiving radiotherapy and for those people working in nuclear power stations."
Listening to: 'Nixon" by Lambchop
explained si @ 17:50
All the Daily Mail reading, Conservative party voting, anti-immigrant, flag waving jingoists who pass this way and believe our country to be benign and righteous should read this article. Sometimes you reap what you sow.
Working For The Yankee Dollar
What would you do for the benjamins or to appease a more powerful foreign government? Would you do this?
Call Centre Blues
I gave up answering my landline phone a long time ago. Primarily because 90% of the calls are from people trying to flog me insurance/mortgages/double glazing (yes it happens) and I like the vast majority of people I don't want to speak to them. Normally I deal with them by stopping the speil in a firm but polite manner and informing the caller I'm not interested in their product.
Yesterday afernoon, however, was different. Yesterday I received my first hit from a call centre based on the Indian sub-continent. While there is nothing unusual in this considering that a lot of companies that use call centres are relocating those operations abroad. The worst thing about this call was the woman's inability to take no for an answer.
The call started innocently enough. The nature of modern business being what it is the fact that they had my name, number and address was not a surprise even though I am ex-directory. After confirming this information the conversation went something like this:
Her: "And do you have a work number and a mobile phone number?"
Me: "Yes, but I'd rather not give you those."
Her: "I understand sir. Do you have an email address?"
Me: "Yes, but I'd rather not give you that."
Her: "I understand sir. What we are offering is free mortgage review service. Would that be of interest?"
Me: "Not at this moment in time no"
Her: "But in the future if we..."
Me: "Let me stop you, I'm really not interested thanks"
Her: "I understand sir but it is completely free"
Me: "I appreciate it's free but I'm not interested"
Her: "But it's completely free, if in the future..."
Me: "No I'm not interested"
Her: "This is a completely free service sir. If in the future..."
Me: "I'm not interested"
Her: "Sir, this is a completely free..."
At this point I hung up. I have never been so close to telling someone to fuck right off on the phone before. I chose to hang up instead. And all this on a saturday afternoon.
explained si @ 12:48
So she had her scan and as predicted she spent an entirely unpleasant 45 minutes inside the MRI scanner. They played 'Ride Of The Valkyries' whilst she was in the scanner which isn't the most relaxing piece of music in the world. The scanner is also very noisy inside which must be fairly disconcerting. As far as the results go on first inspection there is nothing there which is good.
She has been given a course of antibiotics to treat the polymyalgia rhuematica (herein known as pmr) however they won't know if it really is that unless she responds to the drugs. There is one way to get a definitive diagnosis of pma, and that is to do a biopsy of a vein the runs through your head. However the rheumatologist is not convinced that she has pmr and so doesn't want to carry out this procedure.
The side effects of the drug (a steroid) are pretty horrendous and include weight gain increased appetite, bloating, stomach ulceration, vomitting...I'll stop here. So it's a "rock and a hard place" situation. On the one hand the pain is pretty horrible, on the other the side effects seem to have the potential to be even worse. So this is getting her really down and in many ways she's hoping that it's not pmr and they can find another cause of the pain because the side effects of the drug are unacceptable. If it is pmr we are going to try and find an alternative treatment so if anyone has any suggestions I'd appreciate it.
Listening to: 'Beatnigs' by The Beatnigs (on vinyl)
explained si @ 17:34
As promised she got her blood test results back today. And even though she does have traces of the inflammatory condition mentioned yesterday the results are good. There is no trace of the leukaemia in her blood, none at all. The inflammatory condition is called Polymyalgia rheumatica and the treatment is a course of a corticosteroid drug, apparently the condition responds dramatically to this treatment. So she is hopeful that this will sort the problem out although she is apprehensive about some of the side effects of the drug. The real question that this throws up is why wasn't this considered and then tested for when this first started 2 months ago? She has seen 3 doctors at her GPs in the past 2 months and not one of them thought of it. The McTimoney chiropractor, who is also a nurse, did think of it.
She also has her scan tomorrow. It's amazing how a bit of arse kicking from the office of the head consultant can move things along. She's apprhensive about it because it's going to take 45 minutes done in 2 - 3 minute bursts. So she'll be stuck in a large MRI scanner tube for the best part of an hour.
But at least there has been progress and maybe an answer at last.
explained si @ 17:51
The unknown pain saga continues just goes on and on. It is making life unpleasant for her but the long awaited ear scan has failed to materialise. The longer this goes on though the less relevant the scan seems to become. The pain is now through her shoulders and it occasionally effects her breathing which in turn is disturbing her sleep.
She has started seeing a McTimoney chiropractor. McTimoney is meant to be a more gentle and more thorough approach to chiropractice and is probably a more suitable approach for mum. The chiropractor has already said that one of mum's legs is an inch shorter than the other and that there are a number of other issues with her body. It is possible that the pain is a result of the cummulative effect of years of bad posture and that this will help.
Today she went in to the clinic because she was in the hosptial for another, non-serious matter. They are trying to expedite the ear scan with not much success to be honest. She managed to speak to the consultant who saw her the last time and he basically said that the problem is not haematology related and that there was little that they, as a haematology department, could do about it. He did say that there was an inflammatory complaint with similar symptoms that existed, so they have taken blood to test for it and the results should be available tomorrow. They also took blood to run a full check up although there is no reason to believe anything has changed on that front. She hasn't had any feedback from the chest x-ray they gave which we presume means it showed nothing.
But as I've said already it's effecting her general health which in her situation can not be good. She needs to devote all her energy to being well instead she finds her self sleeping badly, breathing badly, in lots of pain and suffering from anxiety. It has reached a point where she is going to have to see her GP and demand some kind of action. Selfish? Probably, but wouldn't you be?
Listening to: 'Birdbrain' by Buffalo Tom
explained si @ 17:45
Yesterday was a day of culture. C & I started at the Tate Modern with the Cruel + Tender photography exhibition.
"Besides sharing a realist style, the photographers in Cruel and Tender take a similar approach to their subject matter, however diverse its nature. Rather than the dramatised scenarios of some types of photo-journalism, the tendency in Cruel and Tender is towards the quiet documentation of overlooked aspects of our world, whether architecture, objects, places or people."
This is a pretty big exhibit and it took us the best part of two hours to get around it. I'm not going to offer a crtique except to recommend it.
After walking over the wobbly bridge, past St. Paul's Cathedral and on to Covent Garden where we had lunch. We made way through Hyde Park to the Serpentine Gallery to see the Cindy Sherman exhibition they currently have showing.
This is probably funnier than it should be!
explained si @ 19:01
For Love or Money?
Tonight on Channel 4 (if you're a UK resident) is the story of Terri Milbrandt and her daughter Hannah. If you're not familar with the story, and I have a feeling that a lot of people aren't, you may be wondering why it's on tv and why I should care. In 2002 Terri, her husband and her mother convinced their home town of Urbana, Ohio that Hannah had leukaemia. As if that wasn't bad enough using a combination of sleeping pills and an elaborate deception involving shaving Hannah's head, plasters to fake chemo, face masks and long drives in the country they convinced Hannah she had leukaemia as well. And that she only had weeks to live. The townspeople eventually donated more than US$30,000 in money and gifts to help which from a town of only 11,000 or so people is not bad going. Only US$500 was ever recovered.
So why am I interested? Firstly there is the obvious leukaemia connection. But my main interest is in the motivation of the mother. What makes this case stand out from your everyday, run of the mill fraud is the fact that they deceived their own daughter as well. They were relatively poor but is the desire for money that great? I'm not morally outraged just amazed.
Listening to: 'Low Life' by Layo and Bushwaka
explained si @ 14:59
This, Rustboy, is a new one and although it appears to be in it's development stages it promises to be good.
explained si @ 18:35
I haven't had broadband for long and on my old dial-up connection it was nearly impossible to watch animations with any continuity. So now I've been catching up, sort of. I found Radiskull & Devil Doll via the Atom Films website. It's new to me but the last episode (8) was made in 2001 and episode 9 seems to have gone astray. It would seem the animator has gone astray too which is a shame. But you should have a look because it's a lot of fun.
And my dvd copy of one of favourite films of all time, Repo Man, shows up tomorrow!
explained si @ 13:15
Hang 'Em High
Jury service is dull. Jury service is boring. I've completed 7 working days worth and managed to read a serious amount of Donna Tartt's 'The Little Friend'. I've only been on one jury so far, a double attempted kidnapping, and that was dismissed today because the two main prosecution witnesses gave testimonies that were too different. It is a strangely detatched feeling when you watch people give evidence over a video link. But something that the defence barrister did at the end of his cross examination of the second girl makes me think that the defendant was guilty. Still there's no going back on that one.
Otherwise my time in court doing my duty as a 'citizen' has been spent sitting on my arse doing a whole lot of nothing. They need to spice the experience up a bit. Still, after next tuesday I'm exempt for at least two years so what the hell!
Listening to: 'Beat This' by The Beat
explained si @ 19:59
Long before the furore that surrounded Goldfrapp there was Alpha. They released their first album 'Come From Heaven' back in '97, a recording of cinematic intensity about love, longing and loss. The two stand out tracks, 'Somewhere Not Here' and 'Sometime Later', are wide open soundscapes that I could listen to forever.
A change of record label from Melankolic to don'tTouch hasn't effected the ability of the band to produce music to fall in and out of love to and a new long player, 'Stargazing', has just been released. The outfit use four different vocalists who all bring a different style and sense of emotion to the songs. But where the use of so many different people can lead to some ill-advised decisions on this album they all seem well suited to the music they accompany.
For me Alpha stand head and shoulders above Goldfrapp. Both bands have the same Bristol origin yet it's the latter who have garnered most praise and success. This is your chance to make amends.
Yes that's me. I have been called to serve as juror as part of our country's fabulous legal system. Today was my first day and what a waste of day it was. I turned up at ****** Crown Court at 9am, sat around reading until 1pm when we were taken into the court room. I failed to get selected vis the lottery process that is used. I then sat around until 2:45pm when we were sent home. What a waste of day. I did catch up on my reading though.
And I have to do it all again for the next 8 working days.
After about a week of bliss the pain is back. She thinks it's some kind of R.S.I. because she has been working hard at her computer these past 3 days and the pain has only returned today. She still doesn't have a date for the ear scan.
Listening to: 'Solitaire' by Only Child
explained si @ 17:13