T+582 The Slippery Slope

Posted by raetsel at Wednesday, April 28, 2010

I was at the hospital for two clinics today, my usual transplant clinic and the endocrinology or hormone clinic to look at my thyroid problems. This meant that along with samples taken for research I had 14 phials of blood taken. ( As Hancock said, that's very nearly an armful.)


Things have been going well aside from the odd patch of GVHD on the skin so we are at last trying to taper my main anti-rejection drug ciclosporin. From 50mg morning and evening I am going down to 40mg, again morning and evening. This will mean using the liquid form as the capsules only come in 25mg as the smallest dose. This is a bit of a faff with syringes and it tastes horrible but I don't mind, this has been a long time coming so I am more than happy to put up with the minor inconvenience.

I saw my usual haematology consultant today and she told me this will be the last clinic with her as she is moving to another hospital out of the region. She has been really great and I've gotten on well with her so I will miss her but I have, over the last nearly three years, seen most of the other doctors and they have all been very good. It is an excellent team so I'm not worried about transferring to another consultant.

I'm due back at the transplant clinic in six weeks though of course if the GVHD takes advantage of the reduced ciclosporin dose and flares up badly I can just ring up to go and see them.

In endocrinology the consultant increased my levothyroxine dose form 100mcg to 150mcg daily as my thyroid levels were still too low. Hopefully this will help with the energy levels and explains ( in part at least ) the rather large weight gain I've had over the last couple of months. ( It's not the Haribo it's my glands, honest ).

I'll be back to see the endocrinologist in three months' time but will have my thyroid levels checked at transplant clinic in six weeks to be able to get an earlier measure.

A Night At the Opera

Last night I went to see my first ever opera. One of those things I have been meaning to do but never got round to.

I saw Mozart's "The Marriage of Figaro" at the Wolverhampton Grand theatre performed by the English Touring Opera (ETO).

As the performance was with audio captioning I assumed it was to be sung in the original Italian but the ETO always performs in English.

I had a great seat in the stalls just three rows back ( row E but they took two rows out to extend the orchestra pit to fit the full band in. )

I really enjoyed the performance, the singers were really well cast with the Count being tall and imperious and Figaro himself being very Falstaffian. I did find myself referring to the surtitles on the two big plasma screens either side of the proscenium to get all the words but usually only for the soprano parts. Also once you realised they were repeating a lot of phrases you only had to glance at the screens once then you could keep your eyes on the action.

I would definitely go again but I think the trick is to hear the opera beforehand and know the story so you can concentrate more on the performance and enjoy the music.

I have to say I can see why people become such huge opera fans it is a unique form of entertainment.

The plot?

Ah well...

Figaro, a servant of the Count, is due to marry his beloved Susannah who is in turn worried the Count will try to seduce her and re-instate the "droit de seigneur" tradition of being allowed to sleep with any new bride. Meanwhile Rosalina the Countess knows the Count is planning this and that he no longer loves her. She does however have a suitor in the form of the page Cherubino ( a male part but played by a woman ) and who is banished from the court but is hidden by Susannah. Then Dr Bartolo arrives as counsel for Marcelina his old housekeeper who leant Figaro money which if he can't pay back will mean Figaro has to marry Marcelina instead.

After that it starts to get a bit complicated.... ;o)

Eastenders has nothing on this for plot twists. Especially when we have a woman playing a man ( Cherubino ) who disguises himself as a woman at several points.

Quick apology for not providing links in the text of this post for the various references etc. but I'm sure you'll be able to google anything you are not familiar with.

Speaking of which I also learnt a new word from the opera. "Termagant" I was able to work out what it meant from the context but the origins of the word are quite interesting as I'm sure you'll find.

T + 572 Culture Vulture

Posted by raetsel at Sunday, April 11, 2010

All ticking along ok on the medical front at the moment I am pleased to say. My skin has the odd patch of GVHD but very mild and a couple of days of betnovate cream sees it off. At the moment I am trying to lay off treating the patches as they are pretty minor and not spreading or getting redder. I'm hoping the lack of attention will mean the GVHD gets bored and finally stops playing up. ( Yes I know it is not very scientific to characterise GVHD as a petulant toddler).


Meanwhile in the last couple of weeks or so I've had, for me at least, a veritable flurry of days out.

Here are the highlights.

Kick Ass

I saw this film at The Electric Cinema and was really impressed with it. I had only seen a couple of posters about it and wasn't really interested but Gareth was keen to go and I was so glad I went with him. It is probably one of the best films I have seen this year. Funny, clever, thought provoking and with an excellent cast, even with old Horse Face himself, Nicholas Cage. ( This is the first film I've watched all the way through with him in. )

I won't go into the plot, you can go google that easily enough. Suffice it to say if you haven't seen it yet and enjoy clever humour mixed with strong comic book violence with an edge of realism then you'll love this film.

I was so impressed I ordered the graphic novel the film was based on, well actually developed along side as it happens. When I have finished my current book this will be my next read.

Cerys Matthews

I saw Cerys Matthews at the Glee Club which is an excellent, intimate space to see musicians as well as comedians. ( In fact I've been to far more music gigs there than I have comedy gigs). She has a new album out and this was the first date of a UK tour to promote it, but it was really a retrospective of all her work including some songs from her time in Catatonia.

She was accompanied on stage by two guitarists, one of whom, the American Mason Neeley also provided percussion and was hilarious when pronouncing the name of one of Cerys' collaborators on her next album. The great Welsh baritone, Bryn Terfel came out as Bren Tuffle.

The sound mix was excellent and her beautiful, lilting voice came through well. That said it is a tribute to the quality of the production of her albums that her recorded voice is almost as good an experience as her live performance. Almost but not quite.

Cerys also proved a very funny raconteur in between songs to the point she could almost have done a comedy gig at the Glee Club instead.

Les Miserables

I saw this at the Birmingham Hippodrome at a packed Saturday matinee. This is of course a very well known musical based on the work by Victor Hugo. The Glums as it is sometimes flippantly called is a "fully sung" musical by which I mean it is more operatic in nature and there is no spoken dialogue, every word is sung. ( I much prefer this to the bit of acting then "let's everybody burst into song" type of musical. Unless the setting is appropriate as in something like La Cage Au Folles which is totally camp and over the top and based around show business. ).

The whole afternoon, three hours including the interval, was riveting with the set, the orchestra and the performers all coming together create the illusion of 19th Century Paris during the French Revolution brilliantly.

A big surprise was the performance of Gareth Gates as the romantic lead Marius. The power and subtlety of his voice was a real treat. In fact there was a little debate about whether it was actually him as at the start of the performance there was an announcement saying one of the roles would be sung by someone else and we didn't quite catch it but thought it was the role of Marius.

We were quite high up in the circle and although the view was good it wasn't easy to make out people's faces, thus given the strength and tone of his voice I assumed it was someone else. It was only in the last twenty mins or so Gareth ( not that one, "my" Gareth) convinced me it was his namesake performing.

The lead role of Jean Valjean sung by John Owen Jones was excellent and carried the show with his mix of haunting light tenor and moments of real power.

I'd say go see it if you can but apparently the entire run is completely sold out and I'm not surprised.

Garden

A couple of quick garden notes for me.

The first leaves of my potatoes are showing through and my onions are well established leading me to remove the bird netting as the tops are starting to touch the net in places.

I did some weeding and a light watering in view of the couple of days of warm dry weather we have had.

T + 564 Having My Head Examined

Posted by raetsel at Saturday, April 03, 2010

I had my first trip to the transplant clinic in six weeks on 24th March and it was a fairly routine visit. My consultant decided to leave my ciclosporin as it was for the time being but when I return on 28th April she will look at starting to reduce the dose slowly. She said it could take as long as six months or even a year to get completely off it which was a bit longer than I was hoping but better slowly and effectively than too quick and I end up with a more serious outbreak of GVHD.


I had the second round of my childhood vaccinations after seeing the doc. My third and final round will be when I return on 28th April. That day will be a double clinic visit as I will also be seeing my endocrinologist to review my thyroid levels and maybe look at how I can reduce my hydrocortisone tablets and persuade by adrenal glands to take up the slack.

Overall I have been doing pretty well. My energy levels are good most days though mornings are often a bit of a struggle until the tablets have kicked in and my hormones have sorted themselves out. My skin still is in quite poor condition but twice daily applications of a good moisturiser helps and when I get the occasional outbreak of blemishes signalling a bit of GVHD activity two or three days of intensive application of Betnovate steroid cream quietens it all down.

On the 31st March I had a meeting with my line manager and someone from HR to discuss the findings of the company medical advisors' report I had done a while ago. It was all very amenable though I did have to correct the person from HR talking about a "return to work plan" because as I pointed out I have been back at work full time since January 2009, just not in the office every day. I suggested we call it a "return to the office" plan. The plan HR suggested was that I remain on 2 days a week in the office for another three months then increase it to 3 days for a month and review it and if it goes ok then do a month on 4 days and finally a back to full time.

This is of course all subject to how I get on with reducing my ciclosporin and perhaps more importantly my hydrocortisone but it is a reasonable time frame. In fact I am planning to start going back to the office 3 days a week somewhat sooner as I do enjoy being there and I might as well make good use of my newly acquired car.

Meet Martha

Having recently come into a little money by way of a former company pension fund being wound up I decided the time was right to get a new car. I'd had my previous Smart Car, Arthur, for four and a half years and he was starting to get a little expensive to run by way of repairs etc.

Aside from that though I have been very happy with Arthur and even after all that time I still found him fun to drive. Therefore I had a test drive in a new model Smart Car. They have made a lot of improvements and upped the specification of the various models including things like aircon as standard across the range.

I took possession of a silver and red Smart Four Two Passion on 25th March and since she is obviously just Arthur in drag she was named Martha.




Brain Scan

The other day I finally got round to doing something I had been trying to arrange for quite a while. Namely having my head examined. (Not a moment too soon I hear you cry.) This particular examination however was conducted by my friend (and erstwhile work colleague) Christian who is now conducting research for his PhD in Neuropsychology.

I offered to be a participant in one of his studies. ( They used to say a subject in an experiment but now they have gone all PC. ) This involved being set up with 128 electrodes in contact with my scalp to measure the electrical activity in my brain. I then had to conduct a series of tasks involving moving a cursor on the screen by means of a joy stick towards various coloured targets while my brain waves were recorded.



Christian is investigating the involvement of the Posterior Parietal Cortex in the creation of motor plans for target acquisition. I.e. when you are presented with a number of possible objects to reach how does the brain decide which one to get and then instruct the muscles to move towards it. ( The motor plan). That is probably not quite an accurate explanation of what he is doing but I'm sure he'll put me straight if he reads this blog. ( Which he never does ;o)

It was an interesting couple of hours and below is one of the traces for my brain. As Christian says, if you want to look at this way, here are my thoughts captured in a snapshot.