T + 104 Merry Twixtmas

Posted by raetsel at Monday, December 29, 2008

Here we are in that strange twilight time between and betwixt Christmas and New Year, otherwise known as Twixtmas, well it is by me at any rate.

I had a very nice Christmas, got some great presents and ate some delicious food. The turkey sandwiches ran out yesterday.

My condition only affected a couple of areas of the usual Christmas traditions. My Aunt couldn't come up to Mom and Dad's on Christmas day as she was getting over a dreadful case of the flu though in fact I think even if I wasn't there with my suppressed immune system getting in  the way she would have been too poorly to come up. For similar reasons I was not able to visit my brother and sister-in-Law and my niece and nephew as my brother and niece both had coughs. This was a bit of a disappointment as I couldn't get to see the kids faces when they opened their presents but mom and dad took the presents over in the afternoon.

Not going round to my brother's in the morning did mean, however, that I could interfere even more than usual in the cooking of the Christmas Dinner (Lunch) and with Dad's assistance it all turned out very nice, though I do say so myself. One side effect of that was because I was standing up in the kitchen most of the morning my feet had swelled quite a lot so I couldn't do the washing up after lunch and had to rest with my feet up. Well that is my story and I am sticking to it.

Instead I spent the afternoon on the sofa reading the excellent The Elfish Gene by Mark Barrowcliffe an autobiographical account of, in his words "Dungeons and Dragons and growing up strange". This was a very funny account of his adolescence and his obsession with the role playing games of the seventies and eighties. I was alternately chuckling out loud and cringing with embarrassment  as it reminded me of my own childhood fascination with the games. Highly recommended.

T + 98 Christmas Top Up

Posted by raetsel at Tuesday, December 23, 2008

Today I went to the day unit to have three units of red cells. These were my 16th through 18th units of blood since May, so once again thanks to all you people who do the relatively simple but life saving/changing thing of donating blood.

The transfusion was fairly routine and I was all finished by 14:30. The only real thing to note is that, as was expected at some point round about now, I have changed blood group to that of my donor. I am no longer O+ but A+. As it happens I was given red cells that were O- as that is a universal donor type that anyone can have and I guess they save the A+ for people whose circumstances really need an exact match. ( Though quite what they would be for red cells I don't know, that's why I'm not a haematologist I guess. )

It is quite amazing to think that I know have a different blood group to what I had before September of this year. I'm sure there must be some convoluted CSI style detective story that could be woven around this phenomena. I'll have to give it some thought.

So that is me all set up for Christmas hopefully, I certainly feel like I have more energy and have already tackled the ironing since returning from the day unit.

T + 95 Christmas Traditions

Posted by raetsel at Saturday, December 20, 2008

Not much to report on the medical front I'm pleased to say. My face and neck are still very dry and very itchy but moisturising twice a day and going to bed smeared in Savlon seems to help.

Christmas Family Traditions

I always look forward to Christmas and  this year has a few extra bonuses like the fact I can eat the turkey for the first time in six years since becoming a meat eater again earlier in the year. 

Every family has its own way of celebrating Christmas and its own traditions and I thought it might be fun to say a little about what they are in our family for you to compare and contrast. Some might be similar but I suspect one or two will be very much a Stanford family tradition. As might be expected a lot of them revolve around food.

Let's start with the turkey. He will always be referred to as Cyril and if frozen then during the time he is  defrosting in the back bedroom he will be "having a lie down before his big day". At some point during preparing the turkey Dad will sit him up on the edge of the sink with his legs dangling over the edge. Cyril will be cooked on Christmas Eve and we will have cold turkey on Christmas Day with just the heat from the gravy and veg to warm it through.

I usually stop over at Mom and Dad's on Christmas Eve and my aunt comes up early on Christmas Morning for breakfast. This consists of croissants warmed in the oven with butter and jam (strawberry) and for me Nuttella hazelnut spread to go with the jam. That is a combination I discovered when I used to work over in Germany a lot. My Dad however always has pork pie for breakfast as he has since he and Mom and got married 52 years ago.

To go with the croissant we have fresh coffee made in the chrome 1970's coffee percolator that was a present to Mom and Dad many years ago and makes the best fresh coffee you will ever taste. This Holy Grail of coffee makers is only ever used at Christmas and drinks are usually made with Starbucks Christmas Blend coffee.

After breakfast we open presents with me acting as "hander out" and seated nearest the tree. One of the stocking fillers for my Mom will be a pair of earings and for my Dad a talking book. ( That is a CD of a reading not an actual book that talks. This isn't a Hogwart's Christmas).

After that I head over to my Brother and Sister-in-Law and open presents with them and my Niece and Nephew. I return in time to get in the way of the Christmas Dinner preparations in the kitchen.

Christmas Dinner (we have it at lunchtime but it's always Christmas Dinner) is usually around 14:00 and must always have home made roast potatoes, Aunt Bessie's simply won't do.

After dinner Mom and Dad go over to my Brother's, my Aunt goes back down to her flat and I settle in at Mom and Dad's with whatever reading material I've been bought as presents. In the run up to Christmas I try to finish whatever book I am reading a few days before and then have a collection of short stories to keep me going until the day.

Christmas Tea is for me one of the culinary highlights and consists of turkey sandwiches with all the trimmings of bread sauce, cranberry etc. and pickled onions, Mom usually has ham. For dessert we have my mom's homemade trifle which this year can be made with non-vegetarian jelly.

That's about it for my family traditions, feel free to mention any of yours in the comments link below.

One final thing to mention is my favourite Christmas song which is I Believe in Father Christmas by Greg Lake. Apart from being a great tune based in part on Prokofiev's Troika I like the lyrics which are decidedly un-Christmasy but loads of people have no idea what they are actually saying . You can read the lyrics here and enjoy the video below.

For anyone who thinks its hypocritical for an atheist to enjoy Christmas so much, all I can say is Bah Humbug! ( Oh and mention that the early Christians usurped the pagan solstice and Roman Saturnalia festivals )

T + 92 It's Offical, I'm a NERD

Posted by raetsel at Wednesday, December 17, 2008

Our top story today: The result of my CT Scan from Monday was all clear.

That was what I found out today at the transplant clinic. The wording on the radiographer's report was No Evidence of Residual Disease. So I am a NERD.

This is really good news and shows that so far the treatment is working well and an excellent early Christmas present. It's too early in the day to start using the "C" word ( "C" for Cure, in case you were thinking of something else ) That is not something to start bandying about until two or three years down the line and one way to look at it is you can't say with total confidence that you are really cured until you die of something else. Or is that just my perverse way of looking at things?

In other news, my haemoglobin was 8.8 so has come down quite a bit in the last two weeks and well under the 10.0 cut off for transfusion so I am booked in for a transfusion of three units of blood on Tuesday 23rd December. This should mean I have plenty of get up and go for the festive period. I'll go to the day unit on Monday 22nd to have a blood test to cross match for my transfusion.

I told the doc about my very dry and itchy skin and he said that could be the first mild symptom of Graft Versus Host Disease (GVHD) but there was nothing much to see/treat at the moment. If it gets worse or I develop a definite rash then I need to contact the hospital and they will probably give me some steroid cream to treat it. The doc said that a little bit of GVHD is not a bad thing and can mean you get the beneficial side effect of Graft Versus Lymphoma where the donor immune cells attack any last remaining lymphoma cells.

My next clinic appointment is on New Year's Eve.

T + 91 Scantastic

Posted by raetsel at Tuesday, December 16, 2008

Yesterday I went to Selly Oak hospital for my three month post-transplant CT scan. It was fairly routine apart from when it came for the automated pump to inject the contrast dye into the cannula they had put in my arm. The cannula was in the crook of my arm and I have to keep my arms above my head whilst I lie on the trolley. The pump felt some resistance and, quite rightly, does not force the dye in so they had to come and reset the pump, fiddle with the cannula and do that part of the scan again. Only about a ten minute delay for all that though.

Tomorrow is the transplant clinic but whether the scan results will be available for then I'm not sure. I suspect it's unlikely but you never know.

Meet Mini

My desktop computer, Camilla, had another hard disk problem last Friday and wouldn't boot. I'd had one hard disk replaced about 6 months or so ago and that took the firm about three weeks to sort out. I think there maybe a design fault relating to the air flow in the case when it is mounted with its side stand causing the disks to overheat.

That was to some extent the straw that broke that camel's back and though I could have got another hard drive I decided to take the plunge and buy myself a new computer. But not just any computer, specifically a Apple Mac Mini running the Mac operating system OS X.

Now those of you that know me might be quite surprised that I have gone away from running my beloved open source Linux operating system, well buying the Mac Mini represents something of a re-assessment of my use of computers.

The easiest way to explain it is to apply a couple of analogies. Consider someone who owns a classic car and is always tinkering with it , tuning it etc. but never actually uses it to go anywhere, or a blacksmith who only makes blacksmith's tools in his forge. That's what my use of computers has been especially since with Linux there are plenty of opportunities (id not the necessity) for tinkering.

I'll still use Linux and Unix at work but for home and recreational use I wanted a computer that just worked and worked really well and for that Macs excel. Of course now I have to find things to actually use the computer for ( those places to go in the classic car analogy) but in the new year as I hopefully start to return to a normal life and get reintegrated into society, as it were, I'll be taking a close look at my hobbies and interests.

I haven't totally abandoned my commitment to Free and Open Source Software. Indeed I'm using the excellent OpenOffice as my office suite for spreadsheets and word processing etc. and I'll be looking to use as much free and open software on Mini as I can.

T + 89 Strictly Come Arithmetic

Posted by raetsel at Sunday, December 14, 2008

The usual quiet weekend with lunch in a couple of hours at Mom and Dad's when I also have to remember to take my oral contrast drink in preparation for my CT scan tomorrow. Although I'm usually fine when I have these scans Dad's going to take me just in case I don't feel well enough to drive home afterwards for some reason.

But now on the real important news of the weekend the "shock" result in the Strictly Come Dancing semi-final. For those of you who don't follow the show at the end of the judges voting the scores were as follows:-

Rachel & Vincent 3 Points
Lisa & Brendan 3 Points
Tom & Camilla 1 Point

The result of the tie in the judges scores for Rachel/Vincent and Lisa/Brendan ( both got 75 ) meant they both got the maximum 3 points.

The phone lines opened for the people to vote and then at some point the BBC realised they had a dilemma. Despite being encouraged to vote for the couple they wanted to save from the dance off it was in fact impossible to save the bottom placed couple Tom & Camilla from the dance off because of the arithmetic of the vote.

If Tom & Camilla got most of the public vote they would get 3 points bringing them to 4 points but this would only tie with whichever couple got the least votes and the one extra point. So whichever way it went Tom and Camilla would be in the dance off and all those people who voted for them would have been wasting their money.

Of course because of all the sensitivity around TV phone voting scams the BBC had a problem and so they carried all the votes over to next week and put all three couples through to the final. Here is the key part from the BBC statement on the Strictly website.

Due to the unprecented outcome of the judges vote (there was an tie between the top two couples both scoring the maximum points available - 3 points the audience vote could not have saved one of our couples from the dance off.

The vote opened just before the programme went off air, we took the decision that all the votes cast tonight should stand and be carried through to next weeks final.

Now it did take me a few minutes to check out the arithmetic of the situation but what has been interesting is various bits of the BBC media trying to make sense of it. Firstly the BBC news story said it was "impossible for the public to save any couple", which is not true it's only Tom and Camilla who could not be saved. This morning the story has changed to say:-

Two out of the three remaining couples gained the same amount of public votes which made it impossible to stage a dance off between the bottom two pairs.
That's not right either, they've got the wrong end of the stick and if they think about it what are the chances in a programme where thousands of people vote that two couples get the same number of calls?

The Telegraph has reported the story correctly but seem to think the voting system is somehow complex and Byzantine:-

That meant that whatever happened in the audience vote, Chambers could not be saved from the dance-off - due to the intricacies of the show's voting system - and that was deemed "unfair".
Intricate? Really? Half the scores from the judges, half from the public. Actually the BBC has updated it's story here and that Telegraph story by Ben Leach is a virtual verbatim copy of it. (Leach by name and Leach by nature eh? )

On the Strictly Fan Site there is much talk of it being a fix to keep Tom in, but if you again stop and think about it, even without the tie with the top two couples it would have been a problem. Let's say it was Rachel on 3 points , Lisa on 2 and Tom on 1, the best that could have happened is a three way tie with all couples on 4 points. ( I'll leave you to do the sums to how they could all end up on 4 points ).

What would they have done then? Had a dance off with all three couples?
It seems that some simple arithmetic has thrown the weekend journalists at the BBC and some of the public into a bit of a tizzy. It takes a bit of logic to work out what is going on but I think as soon as people see numbers and arithmetic their eyes glaze over and they throw their reasoning faculties out of the window.

As the Telegraph/BBC article pointed out, it's all John Sergeant's fault.

Still despite all this furore it's better than the X Factor where the only real winner is that Grade A Arse, Simon Cowell

T + 86 Not Going Out

Posted by raetsel at Thursday, December 11, 2008

Well yesterday was the first Wednesday since leaving hospital on the 6th October that I haven't been to the transplant clinic. I have to say that in this weather I did not miss going out at all.

I did however have two lots of visitors. My Mom and Dad popped round after lunch for a cup of tea and to see our decorations in the flesh and late afternoon my friend Andy dropped in for a coffee on his way home from work. It was very nice to see them all.

I finished my flucloxacillin antibiotics yesterday which were to try and help with my folliculitis but I have to say that even this second week on the tablets hasn't made much improvement. The spots on top of my head have cleared quite a bit but I have new ones on the back of my head and down the side of my neck. It's not a major problem though they do itch like very devil at times. I'm trying to alleviate the effects by the use of a variety of ointments and unguents including sudocrem, savlon and a good moisturiser and it is having some impact I think.

Glossary of Medical Terms

Posted by raetsel at Tuesday, December 09, 2008

Click on the highlighted links for more information

Betnovate: A topical steroid cream used to treat a variety of skin conditions including Graft Vs Host Disease (GVHD see below)

Blood Counts: in a healthy human male the normal number of each type of blood cells is as follows

Haemoglobin (Hb) 13 to 18 grams per 100ml of blood
White blood cells 4 to 11 x 10^9/l (4,000 to 11,000 per cubic millimeter of blood)
Neutrophils 2.0 to 7.5 x 10^9/l (2,000 to 7,500 per cubic millimeter of blood)
Lymphocytes 4 to 11 x 10^9/l (4,000 to 11,000 per cubic millimeter of blood)
Platelets (thrombocytes) 150 to 440 x 10^9/l (150,000 to 440,000 per cubic millimeter of blood)

Ciclosporin: An anti-rejection drug that supresses my immune system so the white blood cells from the donor stem cells don't start attacking the tissues of my body. ( See GVHD )

Clean Diet: A diet that avoids foods that could have bacteria and other pathogens in them. Things like no salad vegetables, fruit that is not peeled, shell fish, take away foods.

Flucloxacillin: An antibiotic used to treat skin based bacterial infections.

Folliculitis: An infection of the hair follicles making them appear like acne spots.

GCSF: Granulocyte-colony stimulating factor, a drug that stimulates the stem cells in the bone marrow to produce more white blood cells to boost the immune system.

GVHD: Graft Versus Host Disease, this is when the white blood cells produced by the donor stem cells attack the rest of my body's cells because it sees them as foreign.

Haemoglobin: The substance in red blood cells that carries oxygen to the cells of the body. A lack of red blood cells causes low haemoglobin (anaemia) which in turn causes fatigue and breathlessness

Itriconazole: An anti-fungal treatment

Mantle Cell Lymphoma: A type of Non-Hodgkins Lymphoma which is a cancer of the white blood cells.

: A type of white blood cells that fight off bacterial and fungal infection.

NPA: NasoPharyngeal Aspirate - In other words block one nostril, put the other one over the sample phial and blow. Also known as snot in a pot.

Prednisolone: A steroid used in the treatment of Graft Versus Host Disease

Stem Cell Transplant
: The process of taking stem cells produced by the donor's bone marrow and implanting them into someone to give them a new immune system. This used to be done by bone marrow transplantion but is now done by just infusing stem cells collected from the donor, a bit like a blood transfusion.

T + 84 Have Yourself a Very Hairy Christmas

Posted by raetsel at Tuesday, December 09, 2008

Yes over the last week or so my hair has started growing back. First it was my beard and now it is the hair on my head. It seems to be quite slow growing compared to what it used to do but it is early days and the coverage appears as good as it was before treatment.

As for the colour, well that is an odd mix of being much more very dark brown/black than it was and a lot more white hairs as well especially in my beard. ( I'm growing my habitual goatee, well technically a Van Dyke since the beard is connected to the moustache. For a look at many beard types and their names check out the excellent John Dyer's Blog.) I'd like to think that the white hairs are just from juvenile hair follicles that haven't attained a pigment yet but I suspect I am deluding myself. Still at least the ginger that used to be common in my beard when it grew for any length of time seems not to be returning so far.

The hair on my head is very soft and fine at the moment but then, to steal from Kenneth Williams, my hair has always had the texture of spun gold.

Now for a couple of housekeeping notes. I'm going to update the Story So Far link at the side of the blog so that it covers my transplant. This will enable new readers to get more easily up to speed.

I'm also going to do a post that will be a glossary of the medical terms I most commonly use and add this to the Useful Links section as well. This will save me having to create specific links to definitions each time I use them, I can just link to the glossary. I'll build up the glossary as I go along and update it as and when I use a new term I think needs further explanation.

T + 81 Christmas Comes to College Road

Posted by raetsel at Saturday, December 06, 2008

Having put up the virtual decorations now we have put up the real ones as well, as you can see from this video........


T + 80 Up a Bit, Down a Bit, Fire

Posted by raetsel at Friday, December 05, 2008

No not quite the Golden Shot but yesterday I had a message on my answering machine from the hospital asking me to reduce one of my doses of ciclosporin from 175mg to 150mg. This will be because the level of the drug in my blood is a bit higher than they would like. So that is one less tablet to take in the morning. I'm not sure what caused this little fluctuation but it is not the first time I have had a little tweak like this up or down a bit.

Since I wasn't hooked up to a couple of bags of blood yesterday I took the opportunity to visit my friend Andy for the afternoon and a very nice time it was indeed catching up all the latest from our respective spheres of influence and generally putting the world to rights. It was very nice to get out of the flat.

In the Nick of Time

Following on from my recent post about telling the time, by a remarkable piece of serendipity this week's Horizon programme was all about Time. Presented by Professor Brian Cox a CERN physicist and former keyboard player of the band D:REAM of Things Can Only Get Better fame ( no really, he was ), the programme tries to answer the simple question "What time is it?" it goes into the various ways of measuring time and tries to explain exactly what time is, or at least what physicists think it could be.

You can watch the episode via the BBC iPlayer here.

T + 78 Wot No Blood

Posted by raetsel at Wednesday, December 03, 2008

I went to the transplant clinic this morning and saw one of the registrars rather than the consultant. I don't have a problem with that as I have always got on well with this particular registrar.

The headline news is that my haemoglobin was 10.3 so the same as last week and since it has been stable for two weeks and is above the magic 10 number, the registrar recommended we cancelled the transfusion for tomorrow and I agreed as this had been the plan agreed with the consultant last week.

We also agreed to do another week on flucloxacillin to try to help with the folliculitis ( note I can spell it properly now ) .

Aside from that things were pretty routine, my neutrophils are 1.7 so a little down from last week but these can fluctuate. Still well above the 1.0 level which is a trigger for the evil GCSF.

Finally, as agreed last week I've now got a clinic appointment for two weeks time and hopefully will be able to stay on fortnightly visits if all remains stable. I just hope I remember I don't need to go to the clinic next week.

One thing I don't think I have mentioned is that I have a CT scan booked for Monday 15th December. This will be roughly three months after the transplant and will show if my lymph nodes are still clear and I remain in remission. Quite an important scan and with a following wind I should get the results when I go to the clinic on the 17th.

Those of you who read this blog directly on the blogspot.com site and not via an RSS Feed Reader will notice I've put the christmas decorations up. This is courtesy of the site skincorner plus a couple of very minor tweaks to the template by me. ( Oh and if you don't know what an RSS Feed Reader is then don't worry that means you are probably not using one. :o)

T + 77 Pick a Point to Pop your Pills

Posted by raetsel at Tuesday, December 02, 2008

My latest antibiotic has been causing me a few stomach upsets especially the one I take first thing in the morning. I have to take it an hour before food, just like my penicillin tablet, but I found that for next twenty minutes or so I would have an upset stomach and slight feelings of nausea.

The morning is when I take the greatest variety of my pills: penicllin, ciclosporin, acciclovir, magnesium oxide, amlodipine and if it is a Monday, Wednesday or Friday I also take Septrin all as well as the new antibiotic flucloxacillin. I've tended to take them all in one go when I wake so I have an hour to get up and showered before I can have my breakfast.

It's only the penicillin and flucloxacillin that have to be taken before food so I decided to reduce the potential for drug interaction on an empty stomach and I have started just taking the two antibiotics and my blood pressure tablet amlodipine on waking and I have the other tablets with my breakfast. This has helped a lot and reduced the stomach upset considerably.

Tomorrow is my last day of the flucloxacillin and my spots have subsided a bit but I wouldn't say they have been completely cleared up by the new drug by any means. The doc did warn me that they can be rather ineffectual. I'll see what he says when I go to see him at the transplant clinic tomorrow.

Telling The Time

In the bottom left hand corner of my computer screen, as I suspect on yours, is a clock telling me the time in a precise and digital way such as 10:36. (Alright Mac users for you it will be in the top right corner). However I recently discovered an option to set this as a fuzzy clock. This spells out the time in words and rounds to the nearest five minutes, as you might actually say to a person who asked you in the street. Thus it displays "Tewenty-five to Eleven" when the "real" time is 10:36

This started out as novelty and I have rather grown to like having the time displayed in this way. There is something appealing about the fuzzy nature of it against the hard cold precision of the rest of my computer's display of information. Making it seem more human somehow.

One thing that this new clock has made me more aware of is how I actually picture the time internally. Reading the words twenty-five to eleven I then convert that into a picture of the hands on a clock face. I tend to do this when I read a digital time as well but the processing time to do that in my brain somehow seems quicker and therefore less noticeable. Perhaps that relates to how the parts of the brain that process words and numbers interact differently with the parts that generate mental images or perhaps I'm just less used to reading the time in that way.

The fact that I relate time to a picture of an alaogue clock is, I believe, because of the reason I actually wants to know the time. The reason is almost always because I want to know a duration of time, either how long I have before I have to do something else, such as catch the start of Eastenders ( well more likely the Archers in my case ) or how long I have been doing something. (Have I really spent that long playing Frozen Bubble ).

Knowing just what the time is now in and of itself is not very useful, it's just a number, but knowing the time now and the time I need to go do something enables me to see time as a distance. An analogue clock is an ideal way to visualise that distance. The clock face (real or imagined ) allows me not only to see the time now but also any other time as well, including the time I am interested in. I can see that half or quarter of an hour I have left as the distance between to two times on the clock face.

Is this analogue visualisation just a product of the fact that I was first taught to tell the time from a clock with hands? Digital clocks and watches being not at all common in the early seventies. ( Yes I really am that old). Or is it that this measuring of distance is actually the best way to judge the passage of time? Of course one can look at a digital time of 10:36 and think that's 24 minutes until 11:00 but how easy is it to convert that number, 24, into a useful concept of an amount of time.

As far as I know children are still taught to tell the time with the hands on a clock face as well as with digital time even though I bet nearly all the children will have digital watches. Is that because it's just a hang over from generations of analogue time tellers teaching others that way or is it because it's actually the most useful way to tell the time?

Ah look at that, it's ten past twelve and that means it's lunchtime.

Thanks for taking the time to read this.