T + 408 Preparations

Posted by raetsel at Friday, October 30, 2009

Well the last week I've been doing pretty well, getting back to normal. I went in to the office Tuesday and Thursday this week and hopefully I'll be able to get back to making that the regular timetable.


That said, since I started reducing my prednisolone to 5mg and 2.5mg on alternate days I have felt a bit rougher in the mornings and quite tired come the evening with a couple of early nights already. Today (Friday) was probably the worst it has been but I've still been able to log on to work ok though I did have a little nap at lunch time , which helped a lot.

We shall have to see how this goes. Not ideal conditions for NaNoWriMo perhaps but what you gonna do? It's like the driver lost in a strange village asks the straw chewing yokel "How do I get to town?" "Oh I wouldn't start from here if I were you" comes the reply.

Speaking of NaNowriMo...

NaNoWriMo

My preparations for this year's competition have been going well and I've worked out the main story arc and about 14 scenes in outline ( all of which you are allowed to do as long as you don't start writing the prose). It's looking a little on the light side to last 50,000 words maybe but hopefully it will flesh itself out as I go along.

Tomorrow, Oct 31st, I'm planning on going to the midday Coffee Lounge meet up for Midlands NaNoWrimers (as we are known).

I've also had a rush of blood to the head and decided to go to the midnight write in ( like a sleep over but writing instead of sleeping ). We meet up in the Thistle Hotel in Birmingham at 21:00 on Saturday 31st October for general chat and settling in and then on the stroke of midnight we can start writing.

The idea is to write through to about 08:00 and then go for breakfast in the hotel. Whether I make it that far I don't know but I thought it would be fun to try. I'm getting a lift in to town so I can just get a taxi back at whatever time I call it a day without having to worry about driving whilst tired.

I've also booked Monday off work to help me recover though I am hoping to use that time to boost my word count as well.

The working title for my novel is "Reunion"

T + 400 NaNoWriMo

Posted by raetsel at Wednesday, October 21, 2009

Say what now? Have I finally gone crazy and started spouting nonsense ( more than usual ).


No, NaNoWriMo stands for National Novel Writing Month and once I explain maybe you will think I have gone mad, but first a quick medical update.

Things have gone well this week and I have been able to log on to work as normal and even visited the office yesterday. I've started a slow taper of my prednisolone steroids and currently on 5mg one day and 2.5mg the next. So far so good.

Also my nausea caused by taking itraconazole seems to have eased so maybe it was because my ciclosporin levels were a bit high before.

NaNoWriMo

So NaNoWriMo or NAtional NOvel WRIting MOnth. Well you can read the details on their site but here's the gist of it...

National Novel Writing Month is a fun, seat-of-your-pants approach to novel writing. Participants begin writing November 1. The goal is to write a 175-page (50,000-word) novel by midnight, November 30.

Valuing enthusiasm and perseverance over painstaking craft, NaNoWriMo is a novel-writing program for everyone who has thought fleetingly about writing a novel but has been scared away by the time and effort involved.

Because of the limited writing window, the ONLY thing that matters in NaNoWriMo is output. It's all about quantity, not quality. The kamikaze approach forces you to lower your expectations, take risks, and write on the fly.

Make no mistake: You will be writing a lot of crap. And that's a good thing. By forcing yourself to write so intensely, you are giving yourself permission to make mistakes. To forgo the endless tweaking and editing and just create. To build without tearing down.......

This is the tenth year of NaNoWriMo and in 2007 over 100,000 people took part and 15,000 people completed it.

I actually tried NaNoWriMo back in 2003 but as I had just started my full-time post grad at the TIC I didn't do so well. My issue was not the number of words ( that is never a problem ) but being able to complete the story in time from beginning through the middle to the end.

I've come close to trying again before and this year I have taken the plunge. This time though I have started to fully plot out my story and the characters backgrounds, this is all allowed in the rules as long as you don't start to write the actual story prose before 1st November.

I'm also hoping to get along to some of the face to face meets of NaNoWriMoers that are being organised in Birmingham at one of my favourite coffee shops, the Coffee Lounge Navigation Street.

So what's my book going to be about? Well the general consensus is that whilst it is a good idea to publicly announce you are entering NaNoWriMo ( no backing out now ) the text you write etc. is best kept private apart from the basic details.

My idea is for a darkly comic novel set on a desert island. Think Lost meets Lord of the Flies meets a teen slasher film but with forty-year old protagonists.

All this means I prolly won't be blogging that much during November but I'll try to do a least a quick health bulletin and the occasional progress report. I'll also be tweeting progress as I go, check out the tweet feed on the left of your screen or follow me via my twitter feed.

Wish me luck!







T + 394 Back on Track

Posted by raetsel at Thursday, October 15, 2009

I went to the transplant clinic yesterday and took my Dad with me in Arthur. Mostly for the company but also just in case I didn't fancy driving home.


I saw my consultant and explained how I have been getting steadily more energy since starting the additional steroids. The plan now is to try and get completely off the predisnolone over the next month. I am currently on 5mg each day, from next Wednesday that will go down to 5mg one day and 2.5 the next.

The idea is to get free of the prednisolone over the next four to six weeks. Then it comes to the issue of getting off the new Hydrocortisone but I may be referred to the endocrinologist for that for a formal assessment of my adrenal function if I get withdrawal problems when the time comes.

Yesterday I had an extra phial of blood taken to measure my thyroid and cortisol levels so will be interested to see if that shows anything.

The doc said I was basically back on track which is re-assuring.

Back in three weeks' time.

Today I logged on to work for the first time in two weeks. It's gone ok, I'm a bit tired but no more than usual.

T + 392 Twitter > Trafigura + Carter-Ruck

Posted by raetsel at Tuesday, October 13, 2009

First a brief medical update. You'll pleased to know that the extra dose of different steroids, hydrocortisone and fludrocortisone, have helped get my energy back. It's gradually got better over the last week and today I got up at 07:40 to test if I can manage a whole day vertical.


I'm pleased to say I have managed just fine including a walk up the hill to the shop and a brief ride out in Arthur to do a couple of errands. I'm at the transplant clinic tomorrow and then hopefully logging back on to work on Thursday.

Of course the question remains how I get weaned off these new steroids that I am that help wean me off the original prednisolone steroids. But one step at a time.

Now for the real meat of this post.

Soap Box

It's not that often, I hope, that I get on my soap box in this blog. The last time I can recall was for the Atheist Bus Campaign almost exactly a year ago.

So perhaps you can indulge me once again. I should declare at this point that I am a typical left-wing middle-class wooly liberal ( small "l" ). As such freedom of speech and expression are important to me. Also as a geek, rationalism and the scientific method are important too.

This results in me following several blogs and campaigns and sometimes participating in them ( though only online, I'm an armchair left-wing, etc. etc. afterall)

Some of the key blogs, sites or newsletters I follow are:-

  • No2ID - Against the government ID scheme. For me this is not just a card it's a whole insidious and unsafe database that will cost billions and achieve little except a further erosion of civil liberties.
  • BadScience - Ben Goldacre's excellent commentary on the appalling mis-use of science in the media
  • British Humanist Association - They have excellent campaigns to stop the rise of religious dogma getting into schools unchallenged.

Unfortunately it can feel rather depressing at times when things seem to be getting worse in relation to all of the above and the other infringements to civil liberties perpetrated by this government. ( One I voted for incidentally and don't let the Tories fool you into thinking they'd be any better, just more subtle and commercially orientated).

It's easy to feel "what is the point? Nothing is ever going to change". So it was very gratifying today to see a small victory in "our" favour. This relates to the "Trafigura" scandal with respect to alleged dumping of toxic waste in Africa by the Anglo-Dutch-Swiss oil company.

I was alerted to this issue this morning via a tweet from @stephenfry on twitter

Outrageous gagging order. http://tr.im/BCA2 It's in reference to the Trafigura oil dumping scandal. http://tr.im/BCAm Grotesque and squalid.

Carter-Ruck is a legal firm who specialise in libel and privacy law but more often than not it seems mostly on behalf of large corporations or rich individuals seeking to suppress information that would be in the public interest, not for a poor person picked on unfairly by the press ). These unconscionable lawyers had a judge issue a gagging order on the Guardian reporting on the proceedings of parliament, namely a question about the trafigura report and how it has been subject to an injunction itself.

This is a quite incredible attack on democracy and freedom of speech. You can read about the details from the two links in the quote from Stephen Fry. Just to be clear here, the Guardian was going to be prevented from reporting on the proceedings of parliament, namely a published question in the order paper.

It soon started being reported all over twitter ( or trending as they say) and the 'net in various ways. The LibDems (bless ;o) were going to ask for an emergency debate about this issue in the House of Commons.

By lunchtime the gagging order was effectively lifted or withdrawn by Carter-Ruck . The whole thing had been a PR disaster and attracted far more attention to Trafigura and the injunctions they have been getting than would have happened without this parliamentary gag attempt.

Surely it can't be coincidence that the 'net and the twitterverse was awash with comments about it.

It was nice to be however small a part of this by my re-tweeting of the story and if anyone ever thinks twitter is just about banal subjects like what I had for dinner ( Delia's Smith's stuffed peppers and rice since you ask ), then this shows you it can be so much more.

When Stephen Fry speaks (tweets) 800,000 people hear.

Now this is only one small victory and even in the Trafigura story there is still much to be done to find out the truth, which they are still trying to suppress but even so it was very gratifying.

Thank you for listening.

T + 387 Fight fire with fire

Posted by raetsel at Thursday, October 08, 2009

I went to the transplant clinic yesterday and saw my consultant. She could tell that I wasn't my usual chirpy self and as I explained how I had been the previous week she put it down to one of two possible causes.


But first just to recap on the preceding week. I have been very up and down with my energy levels and nausea, though more down than up. Unfortunately I couldn't find a useful pattern to it to relate to my steroid dose as I alternated between 2.5 and 5mg a day.

For example Sunday was a 2.5 day but apart from a bit of nausea before lunch I had a reasonable day, was able to visit my friend Andy in the afternoon and even iron a few shirts in the evening. Monday, a 5mg day, was ok but I was a bit nauseous. Then Tuesday another 2.5mg was a total washout. It was the worst day for fatigue I have known. I had four attempts to get up and each time after about half an hour or so I ended up back in bed. I finally managed to get up and have a shower by 16:00 and I was in bed by about 21:00

So after those edited highlights back to the clinic yesterday. The two possible causes were poor adrenal gland performance as the registrar the week before had surmised or a more generalised bout of GVHD which would also explain the nausea.

To rule one of these out, to combat the effects of steroid withdrawal the solution is...more steroids. But two different ones this time, some hydrocortisone and fludrocortisone. They will replace the natural levels of cortisol my body should be making. I have to say the interaction and difference between these ( Mineralocorticoids steroids ) and the prednisolone ( a glucocorticoid ) is not at all clear to me. ( Just when I think I am getting a handle on all the medications etc. guess this is why it takes at least 10 years to become a consultant).

So feel free to google and wikipedia all those terms and if you work out how it all hangs together please let me know.

Suffice it to say if my fatigue has been caused by the steroid withdrawal then I should see the difference in a few days time.

If I haven't seen improvement by Sunday this week then a more generalised attack of GVHD is more likely and so then I will up my steroids from 5mg to 30mg which is quite a leap but not as much as a "full" dose for my body weight which is 100mg

Next week at clinic I'll also have a hormone panel taken from my blood samples to check cortisol and thyroid levels.

I took my first doses of hydrocortisone and fludrocortisone and of course it could be the placebo effect but I do feel like I have more energy today though also some vertigo which is a known side effect ( maybe I shouldn't have read the leaflet ).

Just have to see how things go from now on. My gut reaction would have been that it is more likely a generalised attack of GVHD because of the nausea though until now GVHD has always attacked my skin. Maybe it got bored and fancied a change. The consultant said it was literally 50/50 as to it being adrenal or GVHD. Not sure where we go longer term if it is adrenal but for GVHD I know the score. Yet another attempt at tapering the steroid dose over time.