T + 470 Happy Twixmas

Posted by raetsel at Wednesday, December 30, 2009

Happy Twixmas to all my readers. Twixmas of course being the official name for that weird twilight period between Christmas and New Year.


I had a very nice Christmas at home with Mom and Dad and observed all the usual Stanford family traditions. This year I was also able to go see my Brother and his family in the morning of Christmas day as they were all healthy this time.

As far as medical stuff is going, things are ticking along nicely. I've not had any occurrence of GVHD and the 2.5mg of prednisolone steroid every other day is not causing any major problems as far as my energy levels. The only thing I have noticed is a bit of a bout of nausea, tiredness and general yukiness about 2 hours after I have had my morning pills.

It passes after about 15 minutes so I just have to sit quietly and wait it out for the most part. I'll mention it to the doc when I go next Wednesday ( 6th Jan ) but I suspect my ciclosporin levels might be just a bit high and causing this reaction after my morning dose.

I logged on to work this morning for the first time since the start of my Christmas break and I'll be working a half-day tomorrow as well. Then I am off until Monday the 4th January.

Oh and just for a bit of fun, if you read this via the web and not an RSS feed you'll see I have a "guest columnist" offering words of wisdom on the site, just over the holiday period.

Now to promote a rather good podcast I have been listening to for a while...

Escape Pod

Escape Pod is a weekly podcast that is a reading of a Science Fiction story. I came across it a few months ago after seeing my Dad had subscribed to it when he saw it featured on the iTunes store.

I can't praise this podcast enough. If you like science fiction then check the website http://escapepod.org or search for "escape pod" on iTunes.

The stories are really well read and for the most part the audio quality is very good. ( Just the Xmas day issue had poor quality but we'll let them off that as they were probably busy with other stuff like eating turkey and getting drunk ).

The stories themselves have been really engaging and only one of the couple of dozen I have listened to has been "not my cup of tea".

Check it out.

They also have sister podcasts Pseudo Pod for horror and Castle Pod for fantasy. I've listened to a couple of the fantasy ones and they are equally good. I just don't have time to fit in listening to them on a regular basis along with all the other podcasts I have. Can't vouch for the horror stories on Pseudo Pod because as you may know "I don't do scary."

T + 457 Deck the Blogs...

Posted by raetsel at Friday, December 18, 2009

As you can see I've put the Christmas Decorations up on the blog.....

It's been another tough week this week and I've been in to the office everyday except Wednesday. This has been a special occasion as we have had some visitors from our outsourcers from India to do a Knowledge Transfer for oracle that has required me to be present in the office to assist them.

I've coped but I've been in bed by about 20:30 most night and asleep by 21:00

Wednesday I went to the transplant clinic and saw one of the registrars. My B12 and other tests have come back and they are all fine which is good news on the one hand but means the cause of my low haemoglobin remains a bit of a mystery. However the level was up to 11.3 this week so as it is going in the right direction the doc was happy to just keep it under observation, ( known in medical world as MICO, masterly inactivity and cat-like observation ).

We decided to keep me on the same level of prednisolone of 2.5mg every other day rather than try a further reduction and disrupt things over Christmas but things are going well in that direction so whenI go back on January the 6th I might have my very own epiphany and finally get off the pred.

Mommy Dearest

Not Joan Crawford, but my own mom. I am pleased to report she came out of hospital after just over a week and she is making a good recovery at home.

There's still a way to full rehabilitation as it were but everyone is really pleased with how she is doing.

We are all trying to make Christmas as stress free as possible for all concerned and I am looking forward to the festivities.

Avatar

Yesterday I went to the IMAX cinema at Millennium Point in Birmingham to see the latest blockbuster Avatar in 3d and a full 70mm IMAX print.

The opening scenes and initial impact of 3D is very impressive but after that has worn off it comes down to the basics of story telling and there I am afraid it is all rather predictable.

The plot has variously been summarised by others as "Smurfahontas" or "Dances with Smurfs" and to that I would add my own as "A Smurf called Horse". ( The smurf references all relate to the fact the alien, Na'vi people, are all a Smurf shade of blue ).

It is very pretty to look at and all the night time bio-luminescence effects in the forest are impressive but you get the impression they only did those because they could.

There are a few "Basil Exposition" moments where someone says something and you think, "hmm I wonder if that will be important later" and sure it enough it is.

There are some nice ideas and the overall concept is good ( see elsewhere for formal plot summaries ) but, as I say, the main problem is the predictability.

It is a great technical feat, but the animation and 3D effects can't make up for a poorly executed story.

I wouldn't recommend seeing this film unless you want the 3D spectacle (pun intended). on a regular 2D screen I would wait for the DVD to come out but maybe on blu-ray just to get some IMAX effect.

T + 447 The Other Side of the Fence

Posted by raetsel at Monday, December 07, 2009

Sorry for the delay in updating but I do have a good excuse as you will see...


Last Wednesday I had a clinic appointment and it was pretty routine. I saw one of the registrars who reviewed my results but annoyingly my B12 test from last time was not on the system so we had to repeat it which meant being stabbed a second time.

My prednisolone (a.k.a pred) is now down to 2.5mg every other day and so far I've not noticed any ill effects from that so that is encouraging. I might actually get off the damn things this time. Then there is the issue of getting me off the other two steroids I have to support me getting off the pred but one step at a time.

My haemoglobin remains lowish but stable at 10.3 and until we get the B12 result and a couple of other tests back we won't know exactly the reason for that, however I am pleased to say that although it is low I haven't so far felt the effects of fatigue at even light exertion that I sometimes get.

I'm back in the clinic in two weeks.

The Other Side of the Fence

Whilst I was at the clinic I got a call from my Dad to say he was about to go in the ambulance with my mom to hospital. She had been poorly for a while and the GP had decided it was best she go into the hospital.

I won't go into the details other than to say she has been very poorly but is making good progress in her recovery.

It was very hard seeing her in hospital and it gave me a little taste of what other people have had to go through seeing me. In some ways it is worse than being in the bed yourself.

There are a couple of differences, for the most part my admissions were all planned and expected where as this was an emergency and for a couple of days we didn't know what was wrong.

Secondly, whilst I wouldn't say I enjoy being in hospital it doesn't bother me too much especially when I am feeling reasonably ok. My Mom however hates hospitals and anything medical so that makes it tough to see her and know what she is going through.

But she is coping and I am very proud of how she is dealing with it all. Keep up the good work Mom.

T+436 Winner, Winner, Chicken Dinner!

Posted by raetsel at Thursday, November 26, 2009


I had my flu jabs on Monday and apart from a slight residual tenderness on the top of my left arm ( swine flu jab ) I don't have any other effects from the jab. The first couple of hours after the jabs my right arm ( conventional flu jab) ached a bit but that passed off .


Whether this is a good thing or a bad thing and means I have not made any antibodies I am not sure but either way I will not be changing my behaviour in terms of contact with people who have colds , coughs etc.

Gareth had his jabs and had a more noticeable tenderness on his arms, to the point where he could not sleep on the one side ( swine flu again ) so hopefully he is fully protected.

Aside from that things are going ok and I'm down to 2.5mg prednisone steroid a day without any noticeable increase in tiredness or the GVHD coming back.

Just as well as I have needed my energy to make the time to finish writing the first draft of my novel.....

NaNoWriMo Winner

At just past 13:30 today I was officially verified by NaNoWriMo.org as a winner. The first draft of my novel is finished before the deadline of the 30th November and ended up at 50,214 words.

For that I get a nice certificate, the winners "web badge" shown above, the chance to buy a limited edition T shirt with the same design, (duly ordered) and a lovely warm glow inside.

I have to say I am feeling really proud of myself at the moment. It has been quite a challenge but I have been pleased with being able to do it and still maintain a relatively normal routine of work and household chores.

What's that? Oh you want to know where you can read the novel? Well at the moment it is in no fit state to be read by anyone. It is littered with typos and more than a few continuity errors so at the very least it needs a second draft just to remove those. I probably won't start that process until the New Year. I need to think about Christmas for now and a break from the text will also help so I can come back to it with a fresh perspective.

After that I'll see if I want to take it further and re-draft it more fully possibly with a view to vanity publishing it via a site like lulu.com , then you can all buy a copy ;o)

I will however probably post a chapter or two up online by way of a teaser and to say a feeble sort of thanks to everyone who has wished me well in my venture and cheered me on via twitter, facebook etc.

New iMac

As if in celebration of completing my novel my new iMac was delivered today and is currently warming up and acclimatising in the lounge.

My current computer is called Mini and so this new one will be christened Maxi as she is quite a size, but big is beautiful as you can see here http://img159.yfrog.com/i/6la.jpg/

I haven't told Mini yet that she is going to have a new home living at Gareth's mom's and I'll need to transfer my data over from Mini to Maxi.

Luckily I booked Monday 30th November off work which was either to allow for a frantic scramble to finish NaNoWriMo or for sorting out Maxi.

So that is my weekend taken care of. :o)

T + 428 Keep Working the Jab (PG)

Posted by raetsel at Wednesday, November 18, 2009

Rated PG for pictures of warts on my.......toe.

I went to the transplant clinic this morning and was seen by the same consultant as last time. Overall things were fairly routine and we are going to reduce my prednisone steroid dose from 5mg one day and 2.5mg the next to just 2.5mg every day.

I've been here before, briefly, but at the time I didn't have the extra support from the hydrocortisone and fludrocortisone so my adrenals crashed and burned and I was in a bit of a state ( plus I then got a viral infection of some kind. ) Hopefully this time round I should keep reasonable energy levels as I taper down my steroid dose.

I mentioned in passing that I had got a wart or verruca on my big toe as I wanted to check if it was ok to use over the counter remedies to try and get rid of it. The doc said this was very common in transplant patients. Verrucas are caused by a virus, we many of us get them as kids and then we develop antibodies and probably never see them again. However my immune system needs to learn all about them again. He did say some people get some quite "florid" infections of them. ( As an aside that is a lovely multi-purpose use of the word "florid" which my dictionary application defines as :-

1 having a red or flushed complexion : a stout man with a florid face.2 elaborately or excessively intricate or complicated : florid operatic-style music was out.3(of language) using unusual words or complicated rhetorical constructions : the florid prose of the nineteenth century.4 Medicine (of a disease or its manifestations) occurring in a fully developed form : florid symptoms of psychiatric disorder.
He said I was ok to use over the counter-meds but that they can take ages to get rid off. It's been a while since we have had any gruesome pics so I knew you'd appreciate seeing my big toe.
At least I'm not going swimming so I don't have to wear those strange little socks you used to have to wear as a kid. They now seem remarkably prescient forerunners of the modern sneaker-sock, back then they were weird now they are fashionable albeit for a different purpose.
It does sometimes feel like I end up treating these consultations like a session with my GP but I have learnt that there can be all sorts of things that might seem irrelevant, unrelated or unaffected by my treatment that actually do need to be checked. The use of over the counter medicines is one of them.
Last time I saw the doc I had some problems with shoulder and elbow twinges but I am pleased to report they have died down now.
My blood counts were basically ok though my haemoglobin had fallen to 10.4 from just under 12 last time. The doc said it can do that from time to time and indeed this had happened with me over the last few months even though I'd not needed a transplant since March. I certainly haven't been feeling too bad and have been able to go for walks at lunchtime etc. so hopefully its not too serious and the trend reverses. It is something they will keep an eye on over the coming weeks.
He then said that my red cells had been getting bigger over the last few tests. A little puzzled at his wording of cells getting bigger when my count was dropping I asked him what he meant by bigger. Turns out he meant exactly what it says on the tin. My red cells are getting physically bigger in volume. One of the measurements they do is the average red cell volume and this has been getting bigger. This is actually a sign of immature red cells and could be caused by breaking them down too quickly or having a shortage of vitamin B12.

The effects of a lack of vitamin B12 are sometimes known as pernicious anaemia and can be caused either by a lack of B12 in the diet or the inability to take up and process B12 caused by a lack of "intrinsic factor" in the gut. B12 is found in eggs, meat and especially liver. It is also found in Marmite which might go some way to explaining a recent phenomena I have experienced. More of which anon.

The doc ordered a blood test to check for B12 levels and a couple of other things and I'll get the results when I go back in 2 weeks' time.

The doc was also able to give me the haematology department's official line on swine flu and regular flu vaccinations. Namely a letter is being sent to all patients and I should get the jabs ( though they may not work because my immune system is depressed ) and any "household contacts" should get the jab too. With that in mind I am getting my jabs on Monday and Gareth is getting his tomorrow.

So, the Marmite thing....well I have always been in the "I hate marmite camp" however the other day I was "persuaded" to try first a Marmite flavoured crisp and then some of the actual "evil" stuff itself. Turns out I now like Marmite. At the time I jokingly put it down to some weird effect of my donor's immune system or maybe my suppressed immune system couldn't raise a response against the "poison".

However Marmite is a good source of B12 so I just wonder if my body somehow knows what it needs, bit like pregnant women supposedly do with cravings. (Despite appearances to the contrary, by the way, I am pretty sure I am not pregnant ).

Liver is also a good source of B12 so it is a great excuse to have liver, bacon and onions for dinner one evening.













T + 422 Off by one

Posted by raetsel at Thursday, November 12, 2009

Just a quick health bulletin. This week has been pretty much like the last three I am pleased to say. I've been going in to the office twice a week and working from home the rest.


Feeling the cold is still an issue and the heating has been on a fair bit more than usual perhaps at home. Also by the end of the day I do feel quite tired but can usually cope and still be productive with washing, ironing and writing.

The hyper-observant of you might have noticed last week's post of 4th November was labelled as T+413 ( i.e. 413 days post transplant ) but it was of course T + 414. I blame a mislabelling of dates in the little book I record how much I have had to drink each day ( to keep me on track for my 3 litres ). Normal service has been resumed.

NaNoWriMo

This blog is short partly because there is nothing much to report on the health front and partly because I'm using my energies to work on my novel. It's going pretty well , I passed the halfway word count of 25,000 words yesterday.

Am I also halfway through the actual story arc as well as the word count? Well no more like 3/8 or maybe 7/16 but I think I can remedy that and of course it is no problem if I have the time to write 60 or 75 thousand words.

Here is another , not so random, sentence to whet your appetite

Was this thing for real thought Stephan. What kind of evil maniacal genius applies health and safety rules to his lair with such assiduity ? Were there government inspectors for lairs ? What would it be OffLair, OffEvil? OffNut maybe.


T + 413 Write On!

Posted by raetsel at Wednesday, November 04, 2009

It was transplant clinic this morning and I saw the consultant who saw me through my transplant and the first three months post-procedure so it was nice to catch up with him.


We reviewed where I was with everything and the edited highlights are that I am going to stay on the same prednisolone dose of 5mg one day, 2.5mg the next and go back in two weeks' time.

I mentioned about how sensitive I am to the cold nowadays and have to warm up like a lizard basking on a sunny rock before I am fully functional. He said that is often a symptom of thyroid hormone levels but I'd had this tested last time I went to the clinic and he looked it up and the levels were fine. So we are just going to keep an eye on that.

I also mentioned I'd been getting a few aches and twinges in my shoulder and elbow of my right arm, not in the joints themselves but more where the tendons join. I only mentioned this in passing because I know GVHD can attack joints. I was surprised by how thoroughly he questioned me about this and got me to check my range of movement ( which is fine ) and he made a note of it in my, err...notes. He thinks it is prolly nerve related and might be a trapped nerve in my neck. Again we are going to keep an eye on it and review it at my next visit.

Whilst I was waiting between having blood taken and seeing the doc I'd taken my little laptot (netbook) computer with me and managed to write 300 more words for my NaNoWriMo novel which was a bonus.

On that topic...

NaNoWriMo

The "competition" officially got underway this Sunday. On Saturday 31st October I went along to the Coffee Lounge and met up with eight or so fellow wrimers from the Midlands region. It was nice to meet up with some others entering this year and there was a mix of ages and experiences with some people doing it for the first time and others having completed 5 previous years successfully. It was mostly ladies of the female gender and there were only 3 of us blokes there. Is fiction writing more of a female pursuit I wonder?

After a couple of hours I went back home to have a nap to prepare me for the night time write over. We met in the Thistle Hotel at 21:00 and got settled into a very nice conference suite for the night.

We had a countdown and on the stroke of midnight we began writing. The way the night went was generally 45 minutes of quiet writing and then a 15 minute break for nattering, stretching legs etc. This worked really well and by 05:30 I had reached the target I had set myself of 5000 words.

I could have carried on a bit longer but I decided I would take my leave of the group at this point and I was tucked up in bed by 06:00 on Sunday morning. Most of the rest of the group carried on until 09:00

It's been a long time since I stayed up until the early hours doing anything and it was fun. I woke about 09:30 on the Sunday and though physically tired, mentally I was reasonably alert so I got up. By midday my mental state matched my physical one and I went back to bed for a "nap" which lasted four hours. After that I was pretty much back to normal sleep patterns.

There are a couple of pics of the write over here and here

Since the Sunday I have been making reasonable progress with the writing and my current total stands at 9821 words. Which is well ahead of schedule in terms of just number of words. In terms of where I am in the progress of the story that is another matter and something I will need to address this weekend I think with some longer writing sessions.

Here is a random sentence from my novel so far:-

“Gentlemen..” Lili tried again. Still no attention. Lili put her thumb and finger in her mouth and emitted a shrill whistle that almost made the glass windows of their room vibrate. She followed this by an equally loud “Oi!”.

As you can see it's a bit of an ugly sentence with the repetition of "Lili" but it was prolly written around 3am and the whole point of this exercise is to switch off your internal editor and just write and move on. Corrections are for after the initial creative burst of November.

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.


T + 379 I'm not an addict.....

Posted by raetsel at Wednesday, September 30, 2009

.....I can give up any time I like" as the old government anti-drugs campaign used to say.


I've had another bad week with fatigue and nausea to the point that for large parts of the day I've been hors de combat and certainly not up to logging on to work. I was due to go to the transplant clinic next week but called yesterday to get the appointment brought forward.

I saw one of the registrars who was very nice and she confirmed my suspicions that the cause of my problems is mostly likely steroid withdrawal. Unfortunately at this stage the only treatment is to go back to a higher dose of steroids to get the corticosteroids flowing again as my adrenal glands have decided to take a holiday as they think they are no longer needed.

This is a bit frustrating as this current tapering regime seemed to be working well and I have only had one small outbreak of my GVHD rash that a couple of days of topical betnovate cream sorted.

The doctor said that it is possible to become dependent upon steroids and then the tapering and withdrawal has to be done even more carefully. In really bad cases the dependency has to be treated by an endocrinologist who uses cortisone and other drugs to aid the weening process.

Hopefully it won't come to that.

I'm currently on 2.5mg every day of prednisone but will now increase that back to 2.5mg one day and 5mg the next. If I improve on that then the aim is to taper even slower and go to 2.5mg for two days then 5mg and so on , going longer and longer between 5mg . It's going to take a while to get off them at that rate but it maybe the only way.

I'm due back at clinic next week to see how I am getting on but in the meantime I've been signed off work for two weeks whilst I try and adjust.

T + 372 Deja Vu

Posted by raetsel at Wednesday, September 23, 2009

Since my last post celebrating one year of transplant I have certainly had a deja vu feeling, or déjà vu if you want to be posh.


I've been feeling unwell since last Wednesday 16th September evening and today is the first day I have felt well enough to log on to work, though I'm still not 100%

I'm fairly sure it is mostly steroid withdrawal related, I just get these waves of total fatigue come over me. Unfortunately when it came over me on Wednesday I was in the middle of cooking a lasagne for my tea using a new recipe. I'm not quite sure how I managed to get through it to be honest though as soon as it didn't need any attention from me I had a lie down while it finished cooking. The result was passable and I did find eating a portion perked me up a bit so I wonder if it is blood sugar related? I'll ask the doc about this when I go to the clinic next.

The following morning I realised I had left out the wine and only used half the amount of cheese sauce I should have in the lasagne so I was clearly not focussing well. Even so it was passable and I look forward to trying it again when I am "compos mentis".

From the Wednesday onwards I have suffered from nausea in the mornings and bouts of fatigue coming over me that have made doing anything but sitting or lying down really difficult.

On Friday I had a bit of a scare with my temperature going up to 37.8 ( 38 is the magic number when I have to ring the hospital ). I had a two hour nap and my temperature had come down but I went on to sleep another 12 hours.

I might have had an infection starting but it looks like even my puny immune system could fend it off. Maybe the virus or whatever infectious agent it was , wasn't having a good day either.

The problem since has been working out how much I can manage and not doing too much but the tipping point into lethargy seems to be quite sudden. On Monday afternoon I helped Gareth in the garden a bit and then came in to do the washing up and that was too much for me and I had to stop half-way through.

The trick is stopping before I do too much which, if you will allow me a digression, reminds me of a customer I had when I worked for a CAD company.

The client had just done a health survey interview for all staff and my contact, a hard drinking Northern Irish man was asked about his drinking. "I drink until I've had enough" he said. "And how do you know when you have had enough?" asked the interviewer. "That's easy", came the reply, "When you fall off your stool, have two more, then stop."

So aside from feeling rough like I did a year ago I also noticed one other little coincidence that has been replicated from a year ago. Channel Four showed the three Lord of the Rings films on successive Saturdays. I remember this helped me through a couple of evenings when I was on the Bone Marrow Transplant unit. So seeing the trailers for it again on the same weekends this year brought it all back to me. Spooky. (I really should get round to finishing reading the books, but that is another story [pun intended]).

However I'm fairly sure I'm not in a time warp or ground hog day situation, which is just as well as I am really looking forward to getting back to the good progress I was making before the last two little hiccoughs I've had.



T + 365 Now We are One

Posted by raetsel at Wednesday, September 16, 2009

My immune system is now one year old. It depends exactly on how you count it but I received by donor's cells on Tuesday 16th September 2008.


I was in the office so I bought cakes and cookies for people to celebrate and when I got home Gareth had got me a birthday card with a "1" on it and cooked me a celebratory meal for dinner ( with a little help from M&S).

The year has flown by in many respects and I was reading back over some of my posts at the time. It bought a lot of memories back. Can't say they are exactly happy ones as I was quite ill for most of the month of September but it is something to be able to say "I got through that".

Unfortunately my body has decided to join in the nostalgia by making me feel like crap, especially in the mornings. I haven't quite pinned down what is causing it and yesterday I was pretty good and able to go into the office but today I woke with the collywobbles and feeling nauseous and lacking in energy and this happened last Friday as well. Maybe it is related to dropping the steroid dose.

I've shuffled some of my meds round to help with the nausea and now take my itraconazole liquid on its own in the morning and sit up in bed very still for 30 mins after taking it. That seems to help.

I can cope and I do start to feel better as the day wears on it's just rather frustrating particularly as it is so inconsistent. Monday I helped a Andy move house and that was fine as well, then today I am laid low ( though have still managed to work a full day logged on to work from home). At least I don't have a temperature or any rash so it's unlikely to be an infection or GVHD issue.

On a completely unrelated topic during my recent infection and recovery I stopped shaving and so had quite the full beard by this weekend. Well the Devil makes work for idle beard trimmers so on Sunday I experimented with a new look:- (Click to embiggen, actually you can't for some reason blogger has gone wonky try the links here and here)



Mom was not impressed when I turned up for Sunday lunch even though I had lost the cravat by then.

Since then I have trimmed off the side burns and just have the long droopy moustache but I've started growing my usual goatee back. Though I might go for some of the other options exhibited in John Dyers blog. "The Quest for Every Beard Type"









The garden has also had a make over. It's gone from a meadow to this:-









And today the transformation was completed by Greenway Garden Services:-

They did the levelling, paving and gravelling (sic) and put the spare soil into the beds that Gareth built all in five hours.

It's not been exactly cheap but it's been easier to earn money typing at a keyboard to pay for it than trying to do it ourselves.

I think it will work out at about £2.30 a potato until 2017 but after that I'm in the paydirt :o)

I need to see if there are any late crops I can plant now . Answers on a postcard please. Or email. Or a comment below.

Here's to the next year! Wonder how things will be when I look back to today.....

T + 360 Back to "Normal"

Posted by raetsel at Friday, September 11, 2009

On Wednesday I went to the transplant clinic and got some good news as my blood counts and my neutrophils in particular had returned to their "normal" levels. Normal for me is not quite normal for anyone else as I am still on steroids and ciclosporin both of which suppress the immune system white cells.


We are going to have yet another go at reducing my steroid dose but this time I have some new 2.5mg tablets as well as my usual 5mg. I will try 5mg one day and 2.5 the next for two weeks and then 2.5mg every day for the following two weeks before I go back to the clinic in a total of four weeks' time.

The visit didn't get off to a great start as after the phlebotomist had taken my blood, rather than taping a ball of cotton wool over the puncture mark she used some type of gauze packing. I thought nothing of it but as I walked out the room I was met with rather shocked faces from a couple of the other patients in the waiting room. I looked down and saw the blood was running down from the crease of my arm. It was one of those things that looked more impressive than it was but I scuttled back inside the treatment room to get it sorted.

More gauze, pressure and tape was applied and the red tide was stemmed. I asked had they run out of cotton wool and was told they are not allowed to use it anymore "something to do with the fibres" was the response from the nurse, with appropriate sighing and eye-rolling. It does seem faintly ridiculous. How many years have people been using cotton wool? I've had getting on for a hundred sets of blood samples from my arms and never had any leaks. First time with the new gauze and that is the result.

However let me move on before I start blaming health and safety or saying it is political correctness gone mad.

That Wednesday was the 9th September and I was admitted to the Bone Marrow Transplant (BMT) unit on the 8th September 2008 with the actual transplant taking place on the 15th. So to celebrate that fact and to say thank you for the amazing care I had had I bought a few boxes of chocolates for the different wards, doctors and clinics that have looked after me.

I was quite the Easter bunny visiting the BMT, Ward East 3a where I had all my prep chemo and the Day Unit where I have been for my transfusions. The staff were really appreciative and it was nice to be able to do something nice for them even if it was just a token.

T + 350 Here I Go Again.... (PG)

Posted by raetsel at Tuesday, September 01, 2009

though unlike the lyrics to the song by Whitesnake I'm not "on my own".


Rated PG for vomit.

Since my last visit to the transplant clinic ( and blog as it happens ) things have been rather up and down. It took me until the following Wednesday to feel well enough to return to logging on to work.

I took my first GCSF injection on that first Wednesday evening with some trepidation but it all seemed to go ok and I certainly didn't have any immediate reactions like I did last time.

The problems this time have come the next morning instead. Both last Thursday and Sunday, the day after my evening GCSF injections I have felt quite nauseous and on Sunday I was sick just after taking my morning Itraconazole and Penicillin. ( I take these first thing as they need to be on an empty stomach and an hour before food ). I guess it was good that I hadn't had my breakfast before I was sick.

I was wiped out for most of the day and took some anti-sickness tablets to help me out for the rest of the day. With all the other things going on with fighting off the infection etc. I hadn't totally associated the problem with the injections but looking back over my little treatment journal ( where I record what meds I take each day and anything else of significance ) I can see the link.

Forewarned is forearmed as they say, so I will know to take anti-sickness before I take my evening injection and another one first thing upon waking. The problem is they take about 1 hour to start working so it means all my other meds are delayed and I have to hope I keep everything down long enough for them to take effect.

Only two more injections to go, hopefully, and my counts will have recovered enough for me to stop them when I go to the clinic on 9th September.

These last three weeks or so have been quite difficult to deal with and I have been feeling quite down at times. It has been an unfortunate combination of events, GVHD coming back, getting an infection, being in hospital, tamiflu and GCSF making me sick all contributing to the situation.

Things had been going very much in the right direction with being able to go the office, the occasional trip to cinema or meal out and getting my steroid dose down to almost nothing. All that has gone by the wayside now and it does feel like a real step back.

It's almost a year since my transplant and though in someways I have come a long way in others I'm still where I was a few months ago. I.e. on steroids and ciclosporin with a reduced immune system and all that means. I've also had more days when I have felt really rough especially with the nausea and vomiting which have been particularly debilitating. Having gone through all my other treatment relatively easily without feeling bad you'd think I'd be in the clear for that by now, but apparently not.

Add in a bit of change and uncertainty at work to the mix and the whole thing has been a bit of a buzz kill, to coin a phrase.

However I must try to look on the positive side. This time last year I was about to go in for my transplant and struggling with a cold and conjunctivitis. That and the ordeal of the transplant itself are all behind me.

Gareth has been tremendous coping with both my moping about and my inability to help with the housework. He even found a Service Bell application on my iPhone so I could summon him when I have been bed ridden.

Mom and Dad have also been supportive but unfortunately the last couple of weeks my Dad has had a cold and now my Mom has it so I've only been able to talk to them on the phone.

It's not often that I feel as low as I have done at points over the last few days and even rarer that I discuss it on my blog but it can't all be sunshine and lollipops. A trouble shared is a trouble halved as they say ( or is that misery loves company? ).



T + 337 Wot No Flu? (PG)

Posted by raetsel at Wednesday, August 19, 2009

Rated PG for discussion of vomit and pictures of rash.

After being discharged by the doc at about 11:00 last Monday due to waiting for tablets I didn't get to leave the ward until about 18:00. My ever present Taxi driver, Dad, came up during normal visiting at 14:00 and stayed with me whilst we waited.
It was a bit odd that, like the nurses who came into my room, he had to wear an apron and a mask:-

even though we were going to be driving home together once I had my meds. I guess the idea was just to stop it spreading on the ward I was on.

When I got back to the flat it looked liked I was not the only resident of College Road who wanted to take precautions (thanks Gareth ;o) :-


That evening I took my first dose of Tamiflu along with a ham sandwich. The leaflets warn that nausea and vomiting are common side effects of Tamiflu but usually only with the first dose and that effect is reduced if the tablets are taken with food. However all was well and I thought I was going to be ok.

The following morning I took my usual morning meds and then with breakfast I took my 2nd dose of Tamiflu. Half an hour later I was being sick and up came my frosties, along with, by the taste of it on the way up, some of my other meds.

This presented a problem as I would need to be able to keep my other meds down long enough for them to be absorbed. I tried a few sips of water and that came back about 10 mins later. I retired to bed for an hour and then tried some more water. This stayed down so I then took an anti-sickness tablet ( ondansetron) and waited an hour for this to take full effect. This is the first time in all my treatment that I have had to take anti-sickness outside of the hospital.

The anti-sickness did the trick and I was able to eat and take my next dose of meds in the normal way. So that set the pattern for the five days , take an anti-sickness twice a day an hour before having Tamiflu with food.

I have been up and down over the last week at times feeling queasy, low energy, unable to concentrate etc. and other times feeling ok. My temperature however has been back to normal throughout.

I have not logged on to work since the Sunday before I was admitted on the Monday and that is prolly just as well as concentration has been hard. Today was the first day I felt like reading a book. Instead I have been letting the Sky Plus box be my constant companion and let the TV wash over me. In particular I have caught up the 5th series of House which is tremendous fun though whenever they talk about bone marrow or GVHD I flinch at the gross errors they make.

Today I went to the transplant clinic for a follow up from my last appointment two weeks ago. From this I got the results from all my tests whilst I had been in hospital. My blood was clear for bacterial infections and I did not have any sort of flu (swine or otherwise ). There was however a "patch of infection" on my chest X-ray and it was prolly a viral infection I had/have. This is medical speak for "we don't know what you have but you've definitely got something".

My neutrophil count was still low and so my consultant prescribed some of the evil GCSF injections that gave me a funny turn back in October. We did discuss with the doc treating me then I could try a different formulation of the drug to see if that worked better, however my current consultant was not keen on that as the other formulation is fiddly to administer at home requiring stuff pulled from two phials and mixed in correct proportions. She felt as I had been fine before the transplant my reactions were probably because it was so close to my transplant ( only a few weeks in fact ) so could I try them again? She said I could get her struck off the medical register for being mean if I had more reactions.

I'll be taking my first injection tonight and hoping I feel ok. To avoid a psychosematic effect I am thinking positive and focussing on the bone pain I'm going to have when the drug starts taking its effect in a few days :o)

I'll be back at the clinic in three weeks when I will have a follow up chest X-ray. There is no point having one now apparently as the spot of infection can remain on X-rays quite a while after the infection is gone. I'll also get the results of the CRP test which is an infection marker in the blood ( it was 44 last time and the normal level is below 10 ).

Finally we haven't had any grizzly pics for a while so in case you were wondering what GVHD looks like, here it is:- (Click to embiggen).










T+329 Back in hospital

Posted by raetsel at Tuesday, August 11, 2009

Yes a live blog posting from the QE hospital. It all started on Saturday when I woke feeling rough with absolutely no energy. then my anti-fungal medicine made me heave though I wasn't actually sick.

My temperature was a bit up at 37.6 more than my usual 36.5 but below the danger level of 38. Unfortunately I had to logon to work to help with the go live of a new server and my colleague (and now boss) was on holiday so there was noone to cover for me. I struggled through the changes needed in between spells in bed.

Sunday I felt a little better and my temperature was down to 37.3 but I still had no energy at all. Monday I started out feeling even better but after bringing the sainsbury's delivery upstairs and putting it away I felt worse again and had to go back to bed. I had asked mom and dad to pop over in the afternoon and when I got up to see them I had another bout of dry heaving with a tiny spec of blood in it (most likely from the straining + not fetching anything up) . I decided at this point as I wasn't really improving I should call the hospital.

The Transplant doctor asked me to come up to the day unit and whilst they waited for blood and NPA results (see medical glossary) she decided to admit me. There were no beds available on the transplant unit or haematology ward where I had been before but by 1700 I was settled in to the admissions bay on the Bournville Ward (still at the QE not actually in Bournville).

I had a reasonable night + feel much better today, must be the placebo affect of all this attention :o). The doc had prescribed me some Tamiflu just as a precaution and because of that I was moved to a single room which was all quite jolly until a nurse wearing gloves, apron and a mask came in with some bottles and a commode! I'm obviously not allowed to leave this room.

However since I started typing up this blog (which takes ages on the touch screen of the bedside terminal) the doc has been to see me + said my blood work was all clear apart from my infection markers were high ( 44 when the usual level is 10 ) so I obviously have or have had an infection.

I'm being sent home today on antibiotics and precautionary tamiflu whilst they await the results of the snot sample but it's not likely I have flu of any sort. I'm still not 100 percent and get tired easily but that is prolly steroid withdrawal symptoms like I had a few months ago. I'm going back up to 5mg a day from alternate days as my gvhd rash has come back a bit as well which is a disappointment.

Right time to pack whilst I await drugs from pharmacy. sorry for any typos it's this keyboard.

T + 323 I Forgot to Remember Not To Take my Tablet

Posted by raetsel at Wednesday, August 05, 2009

This morning I went to the transplant clinic for the first time in six months and it was, just marginally, a bit more unusual than a regular visit.


I had my bloods taken and then realised this morning I had already taken my ciclosporin which I am not supposed to do when I have bloods done as one is to measure the "ambient" level in my blood and this would be distorted by the morning dose. I was obviously out of practice going to the clinic.

Then through a convoluted sequence of thought processes which I won't go into here, I convinced myself I hadn't actually taken my ciclosporin and took my second dose that I would normally take at tea time. Oops.

I then went in to see the doc. She checked the skin on my chest and neck and said there was little or no evidence of Graft Versus Host Disease so we are going to reduce my steroids from 5mg per day to 5mg one day and none the next. Getting ever closer to coming off them.

My other blood results were the second unusual thing. My haemoglobin was back up to 11.2 from 10.6 last time which is very encouraging, looks like the folic acid is helping and I really might finally be making my own red blood cells. My platelets were also fine ( as they always have been throughout all my treatment, which is just as well for someone as clumsy as me ).

My white cells however, and in particular my neutrophils that fight bacteria were a lot lower than they had been. This can be a sign that my body is, or has been, fighting an infection and the doc asked me if I'd had a cold or been otherwise unwell. However I've been fine as far as I know. As the doc said "we treat the patient not the blood test" so she didn't plan to do anything about the low counts at the moment but did ask to see me in two weeks to keep an eye on it.

Since I need to have a proper ciclosporin blood test I'm going in to the clinic on Friday to have that done and a repeat of the blood count sent to the lab to see what my neutrophils are then. Sometimes the analysis machine they use in the clinic gives the occasional anomalous result.

T + 317 Nothing to See Here

Posted by raetsel at Thursday, July 30, 2009

On Tuesday I went to the late evening clinic at the eye hospital having been referred by my optician because my pressures were a bit high.


I got my long suffering taxi driver Dad to take me in case I had my pupils dilated and couldn't drive back. We arrived early and it was pretty busy. My appointment was for 18:45 and I was seen about 19:30 I think. They were short staffed apparently.

The doc I saw did the usual eye exam checks with the big light and called a colleague to come in to take a look at my map-dot-fingerprint dystrophy caused by my dry eye syndrome as he thought the colleague would like to see it.

The doc then recommended I start using the night cream lacrilube again and told me to come back in six months. At which point I gently reminded him I'd been referred for abnormal pressures and could he check them. I guess he'd had a long day. Anyway the good news is that my pressures are fine and I will go back in six months for a general check. The checks they do in opticians with those air puff machines are not as accurate as they can do at the eye clinics with the yellow dye and the blue light thing ( which I now know is known as Goldman Tonometry. You can see a video of different way to measure the pressure here , ( not for the squeamish ) )

In other news I've not been in to the office this week as someone on the floor below where I work and the wife of the person I sit next to have both been treated for swine flu. It hasn't spread anywhere else in the office so far and both people mentioned are now fine so hopefully I shall be back in the office Tuesday.

Tonight I am off to see the British independent Sci-Fi Movie "Moon" with Gareth and Andy and tomorrow the wood is being delivered to build the vegetable beds for the garden.

I ordered the wood from the local saw mill last Saturday where there was that frequent and special use of the word "be" as in "2 be 2" and "6 be 2". Rather oddly the lengths are metric and the other dimensions imperial hence ordering several 3m lengths of "6 be 2" . Now just hoping we get some dry weather to be able to build the beds.

In gadget news, thanks to a heads up from Andy about this recent change in Orange's T&Cs I have been able to get out of my current Orange contract and having been impressed by Gareth's iPhone 3GS I've ordered a white iPhone 3GS 16GB on contract from O2 via Carphone Warehouse and it's due for delivery today with a following wind. ( "Carphone Warehouse" is an odd brand name these days. Car phones used to be just that, fitted in the car and not removable but that was many years ago ).

T+308 Intermission

Posted by raetsel at Tuesday, July 21, 2009

Sorry for the bit of an intermission on my blog. Of course in one sense it means nothing exciting is going on medically which is a good thing but I really should try and manage at least one update a week. I will try harder.

My excuse, such as it is, is that last week I was working Wednesday to Friday doing a disaster recovery test at Hewlett Packard's (HP) recovery centre in Rugby. This is where we pretend some of our systems have exploded and we go down and try and recover them using just the backup tapes onto new equipment provided by HP.

These are relatively intense sessions albeit with some periods of inactivity whilst we wait for the data to be recovered from the tapes. This along with travelling to and from Rugby for three days meant I was really tired by the end of each day. More so than usual. You'll be pleased to know, however, we recovered the systems successfully even if the client never turned up to test them.

In other news I finally got my eye hospital referral sorted after several more phone calls to both the eye hospital and Vision Express and three faxes. A few days after that I had my appointment come through for 28th July at 6:45pm. I was a bit surprised the appointment was so late and I hope I don't get a doctor that has been in clinic since 8:00am. Still I'm glad I've got an appointment relatively quickly after finally getting my referral onto their system.

Yesterday I went to see the Harry Potter (HP) film "Harry Potter and the Half-Blood Prince" at he Electric Cinema in Birmingham with Gareth and Andy. We didn't have a posh sofa this time just the normal seats and in relative terms the cinema was pretty busy with about two dozen people in the 17:30 showing. Even so we had the row to ourselves and the rows immediately in front and behind were empty as well which suits me just fine.

I won't go into a review of the film at the moment other than to say I enjoyed it and was surprised to have an intermission about half-way through ( it is 153 minutes or just over two and a half hours long). We thought this was something the Electric were doing off their own bat but just after the Christmas Party scene up came an official HP (not that one, the other one ) title screen announcing an intermission so clearly this is designed in to the showing of the film as it were.

We had a five minute break and people could get drinks from the bar and go to the loo. All very civilised. Quite how this would work with a huge 300 seat screen at your local multiplex I'm not sure but for the couple of dozen people at the Electric it worked well.

The only other films I have seen with an official intermission in them are "Gone With the Wind" and "2001: A Space Odyssey" and no I wasn't old enough to see these at the cinema, these were on DVD.

T + 295 Irrational Pleasures

Posted by raetsel at Wednesday, July 08, 2009

Well I finally got the automated system at City Hospital to understand me when I encountered it again today. When it says "Did you mean Eye Centre or Eye Department at City?" you have to say "Eye Centre" again not say "Yes". Not really intuitive particularly given the way the inflection is on the sentence.


After that, when I got through, my referral from Vision Express is still not on the system despite supposedly having been posted two weeks ago and faxed 3 days ago. The woman at the eye centre said give until Friday and if not on the system by then get Vision Express to fax it again and she will walk it through the system.

Meanwhile a non-medical item.

Irrational Pleasures

There are some things in life that give you far more pleasure than they really ought. Disproportionate to the significance of the item or act. I refer to these as irrational pleasures.

As you will see below I have currently deprived myself of one my specific irrational pleasures and that got me thinking to what irrational pleasures there are that are common to people and what are specific to me.

So here are a few, first the common ones:-

  • Popping bubble wrap
  • Poking the spoon through the seal on a jar of coffee
  • Getting into a freshly changed bed for the first time
  • The other side of the pillow

Here are some that are prolly specific to me:-

  • Popping freshly cooked broad beans out of their jackets
  • Sealing a zip lock bag
  • Shredding paperwork
  • Using my "S" bookmark

The last one I should probably explain. A couple of years ago a couple of friends, as a little "stocking filler" for my birthday ( to mix my metaphors ), bought me a pressed metal book mark in the shape of an "S". I've never used a bookmark before as I never found one I liked and I tended to remember the page I was on anyway ( I have that sort of memory for numbers ). However for some reason using this S bookmark and clipping it on the the page and at the paragraph I was on was really enjoyable. I love that little bookmark.

Now I am reading books on my Sony Reader I have deprived myself of that pleasure. Though I will still be reading normal printed books in the future.

On the subject of the Sony Reader it is really good and so like a printed book that last night in bed I found myself reaching to turn the page on the top right edge rather than pressing the next page button.




T + 293 "I'm sorry I didn't catch that"

Posted by raetsel at Monday, July 06, 2009

Well another week has flown by, such a trite saying I know but I feel the need to say it somehow.


Quick recap on the week's events:

The 20/20 Cricket on Sunday 28th June with Dad was a great day out. The weather held and there was an exciting last ball win for Warwickshire.

The week at work has been its usual intense mix of tasks. I made it in the to office on Tuesday and Thursday, as is becoming my routine now. Whether I shall have to retreat to my bunker next month when Swine Flu takes a real hold or not remains to be seen.

I chased the eye hospital about my referral from the opticians from the 25th June and it was there I encountered City Hospital's wonderful voice recognition system. "Please state the name of the department or person you wish to contact". I said "Eye Centre" not expecting that to work at all, but low and behold back came the response "Did you say Eye Centre?" but then despite three attempts it could not understand me saying the much simpler "Yes". As it is part of Sandwell trust maybe I should have said "Bostin'" instead.

I eventually got through to a human who confirmed no referral had been received so I gave them a week and then checked again today and have now had to ask Vision Express to fax a copy through with my hospital number on. All this is just get the appointment process started. I shall try not to go blind in the meantime.

Last Wednesday was a nice little excursion for me again. Dinner at the Green Room and then the cinema, this time the Electric Cinema. I had a sofa seat to share with Gareth and though we took our drinks in we didn't take advantage of the waiter service you can get by texting the bar during a performance. It is a great little cinema and worthy of your support.

On that topic I nearly achieved an ambition of being the only people in a cinema. Right up until the very start of the film, the BBFC certificate was on screen in fact, Gareth and I were the only people in the screening but then another couple came in and my ambition was thwarted again.

The film we saw was "Sunshine Cleaning" made by the same team as "Little Miss Sunshine" but no relation apart from the word Sunshine. It was a poignant, touching and funny film. Very enjoyable and only 90 minutes long which is ideal for a mid-week 20:30 showing. Though the subject matter is completely different, a good comparison for the sort of film it is, in terms of sensibility and general feel at least, is "Juno"


T + 283 The Eyes Have it

Posted by raetsel at Friday, June 26, 2009

Well the holiday is nearly at an end but the weekend still has some events to finish off the week. Saturday is a birthday lunch at Mom and Dad's and Sunday Dad and I are off to the 20/20 Cricket at Edgbaston.


Wednesday I went to transplant clinic for the first time in four weeks. On the whole it was pretty good apart from a cock up with pharmacy meaning I had a three hour wait to get my drugs.

The best news was that I don't have to go to the clinic for six weeks this time. (Unless of course something crops up and then I can just call the ward or the day unit to get advice and come in if necessary). The plan is to continue reducing my steroid dose three weeks now at 10mg one alternating with 5mg then next , then another three weeks at 5mg daily.

A slight disappointment was that my haemoglobin had fallen from 11.9 four weeks ago, when it appeared to be on the rise, to 10.6 this time. I've not felt any of the usual side effects of low haemoglobin so far and I am not in the transfusion zone just yet. To try and give my blood making system a little boost the doctor prescribed some folic acid once a day as it is a good general blood "supplement".

The other downer was catching up with a young guy who was in hospital the same time as me last year quite often and whom I've seen in the clinic a few times. He had a transplant off his brother in July last year and had been going really well with only visiting clinic every couple of months. However now he is back to visiting every week as he has developed Graft Vs Host Disease of the lungs. He's on steroids at the moment and being carefully monitored. We didn't have much time to chat because I was called in for bloods and then he went in to see the doctor.

It's obviously a set back for him and a reminder that even nearly one year out after transplant there can still be bumps in the road, or even big pot holes. A sobering thought in case I get too used to this partial re-integration back into civilised society.

Thursday I went to Birmingham and had my eyes tested. As well as needing a new prescription and being warned the time when I'll need reading glasses gets ever closer, I was also told the pressures measured in my eyes were a bit high.

Even after a second measurement they were still high so the optician referred me to the Midland Eye Centre at City Hospital. The pressures are only a bit high and it's probably caused by the steroids but I have been referred to check it out in case it is the early signs of glaucoma. I have to ring the hospital in a few days to make an appointment.

After the opticians I went clothes shopping with Gareth and got some really nice stuff , t-shirts, polo shirts and jeans from M&S, shorts, a new man bag and a crazy Ben Sherman shirt from Debenhams. I lasted the day quite well and enjoyed my first trip to Starbucks in about 18 months, but I was quite tired by the end of the day.

Today, Friday, was to have been a day trip to Prestatyn via the waterfall at Dyserth. However I decided to give this a miss since the forecast was for a waterfall pretty much everywhere anyway, and so it has proved to be.


T + 279 A Week Off

Posted by raetsel at Monday, June 22, 2009

I don't mean a week off from writing the blog, though that is also apparent, but rather the fact I have a week off from work. Which is what is going to be what I believe is known in modern parlance as a "staycation".


The previous week at work was pretty intense as I was covering all the systems for my boss for the first part and then trying to clear the decks before I went "away".

On Friday Arthur, my Smart Car, developed a rubbing noise when in reverse so I took him in for a service this morning, so I didn't get a lie in as the appointment was for 08:00

Tomorrow I have a former work colleague coming to take me to lunch to say thanks for reading his Psychology dissertation. He's about to start a PhD on brain imaging at Birmingham University. I think I have mentioned this before. Anyway as someone who's attempt at academia didn't quite run to plan I'm really pleased for him and only a tiny bit jealous.

Wednesday morning I am at the transplant clinic for the first time in 4 weeks. Hopefully all will be routine and we will look at reducing my steroid dose a little bit more.

Thursday is an eye test in the morning ( really living it up eh? ) and then I am being "restyled". Gareth has the day off as well and is going to be my Gok Wan for the day. ( He's going to kill me for saying that ). It is time I updated my wardrobe it is true.

Friday depending on the weather I might make a trip up to my "spiritual home". Prestatyn. Why is that my "spiritual home" ? Well I use the term advisedly and it's a long story that I won't go into yet. ( One has to maintain a certain air of mystery after all ).

Over the last couple of weeks I've been getting some upper back pain caused either by bad posture at the computer or a muscle strain. It has been easing off these last few days so I'm going to try and spend less time at the keyboard whilst off this week. A good excuse for not blogging for a while anyway. :o) Though I'm sure I'll still be updating twitter.

T + 271 Glee Club

Posted by raetsel at Sunday, June 14, 2009

Yesterday I had a night out at the Glee Club in Birmingham for an evening of stand up comedy. Though I am a huge fan of stand up I've only ever been to the Glee Club a couple of times and they were both music gigs.


So here are my thoughts on the venue and the acts we saw.

The booking said it was allocated seating but didn't actually say where we would be seated so after a quick drink in the rather swish Glee Club Lounge we headed upstairs to the main room and were shown to our seats. The room is laid out with theatre style curved rows with small tables in front of free-standing, and not overly comfortable, chairs. We were shown to seats in the second row just off centre, about 4 feet from the small stage. A great view of the stage but potentially a great view for the acts to see us and make us part of the performance.

Luckily there were a large group of girls in the front row and they provided most of the audience interaction. We were in our seats by about 20:00 but the show didn't actually start until 21:00, it was a sell-out however with, we estimate, about 500 people in and the club obviously wanted to make sure they all got the chance to buy a drink at the bar.

The first act of the evening was the compere for the whole night, Alistair Barrie. He had a light easy style and interacted with the audience well along with his pre-prepared material. By chance one of the single women in the front row was sitting next to a single guy and they both "sold energy" one for Eon and one for EDF . They became the centre of attention for a running gag all the way through three spots that Alistair did between the main acts.

After about 20 minutes by Alistair the first act proper was brought on, Rob Rouse. I recognised his face from a couple of shows on BBC3 and he has also appeared as a talking head on one of those "100 greatest something or other" shows.

Rob put a lot of energy into his act which included a fair bit of physical comedy, particularly with his use of expressions. This was great for us being able to see so clearly but the whole room seemed to appreciate his act. After a brief mention of Jacqui Smith and her husband the rest of Rob's routine was about domestic matters and he built up the energy with a long routine about his over-amorous dog embarrassing itself at his mother-in-law's. The routine was perfectly pitched and paced and he really had the room roaring by the end. An excellent start.

Then came an interval of supposedly 15 minutes but it ended up at half an hour before Alistair came back on to do a few more minutes and then introduce the next act. Although the room was getting more lubricated by alcohol it had lost some of the energy Rob had built up so Alistair did well to get us back on track as it were before the second act Andrew Lawrence was brought on.

As you can see from the pictures on his website Andrew Lawrence has an "unconventional" appearance and a lot of his humour is self-deprecation. His voice, but not his style reminded me of the comedian Andy Parsons. He has quite an aggressive delivery and did a few "patter" routines with long streams of invective. They were very clever and an impressive feat of memory but they fell short of being rip-roaring funny and some of the terms he used like "spastic" and "gypsy" were, I felt, needlessly offensive. He did get some shock value and aside from that he had some good lines but overall his performance was a bit hit and miss.

We then had a second interval of about 20 minutes before Alistair came back out for his third spot and then introduced the headline act. Steve Gribbin.

Steve came out with his electric guitar round his neck and it was a surprise to see a more mature comedian when a lot of comedians are late 20s or mid 30s. Given he did some routines about his 15 and 17 year old children being like living with Scooby Do and Mutley I guess he was in his late forties / early fifties.

For a lot of his act Steve played just the first few bars of popular songs like "I'm a believer" but with alternative lyrics that were funny and satirical. The musical comedy equivalent of a one-liner. His targets were mostly political leaders around the world but Michael Barrymore also came in for some amazingly vicious (and funny) treatment, but as Steve said "This isn't telly so I can say what I like, the laws of libel don't apply to live performances". I'm not sure about the laws of slander mind you.

Steve worked the room like a real pro and was clearly enjoying himself , he even managed to work in a song about the "couple" in the front row who sold energy so this was a nice "call-back" right to the beginning of the evening that Alistair had first started.

The show finished just on midnight and the tables were being cleared away for the self-proclaimed cheesy disco as we were leaving.

All in all it was a very good night out and I laughed a lot, which must be the point after all. It's a great venue to see comedy at, especially if you get seats where we did. I will definitely be going back for more stand up shows.

My only criticism of the venue, and I might be showing my age here, is that the music played during the intervals was way too loud, almost painfully so with some tracks. ( Which included, bizarrely, the theme to Black Beauty ). My voice is a little hoarse (no pun intended ) this morning from having to shout to Gareth to be heard above the music.

The tickets were £13 each, which I think is very reasonable for 4 comedians.