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.

Neutrophils
: 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........


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.

T + 74 Working in the Dark

Posted by raetsel at Saturday, November 29, 2008

Thursday morning I came to use my desktop computer ( Camilla ) and the monitor display was very dim and then started cutting out altogether. I tried my laptot on the monitor with the same result so that confirmed it was the monitor that had died. I'd had it about two and a half years and it does get used everyday so that's not too bad I suppose.

Although it was an expense I could do without I now have a nice 19" widescreen monitor and this one has a three year warranty.

T + 71 Spotty Muldoon

Posted by raetsel at Wednesday, November 26, 2008

It was the transplant clinic today and even though I had an early appointment ( 08:45 ) the clinic was eerily quiet. It turns out the M6 was closed and so a lot people who come that way would have been delayed.

It was a productive visit with quite a bit going on. First the counts, my white cells and neutrophils have fallen a bit but are still within the normal ranges for this stage so they were obviously boosted a bit last week by the remnants of the evil GCSF.

My haemoglobin was down to 10.3 from over 11 last week so my last blood transfusion has taken a bit of a beating. It might stabilise at this level but just in case the doc has booked me in provisionally for another transfusion next Thursday, 4th December. He will review my level next week and decide if I need to actually have the transfusion or not. If the haemoglobin drops below 10 then I will have the transfusion.

I discussed my swollen ankles and the doc confirmed its due to the amlodipine blood pressure tablet causing water retention. He said I was doing the right thing by keeping my legs elevated when reasonable. I mentioned about exercise but said the weather wasn't conducive to walking, he said if I had a dog then I wouldn't have a choice. I was tempted to ask for a prescription for one with visions of the pharmacist saying "We don't have any Golden Retrievers in but you can take two Jack Russells as an equivalent."

The other thing I mentioned were my spots. Each week the doctor asks me if I have any rashes as these could be a sign of Graft Versus Host Disease and each week I'm pleased to say I don't have any but over the last few weeks I have been mentioning I have quite a few spots on my scalp. I get these from time to time and they usually last a few days and clear up on their own. Well this lot haven't gone away and have spread to my neck and chest. He had a look and confirmed they are just in the hair folicles, something called folicilitis which is caused by bacteria on the skin. My immune system isn't clearing them up as quickly as they are spreading so he prescribed me some extra antibiotics called Flucloxillin which are good for skin based bugs. I have to take these four times a day for week.

Finally the doc said my magnesium levels are holding up well as my kidneys get used to the ciclosporin so I can reduce my manesium oxide tablets from three times a day down to just twice a day.

On the subject of reductions, if all is looking good next week then I will be reducing my transplant clinic visits to once every two weeks.

Oh and in case you are wondering who Spotty Muldoon is, he was a character invented by Peter Cook and you can down load an MP3 of the rather amusing Ballad of Spotty Muldoon here. Or if I get the codes right you can watch a video of the disc spinning whilst you listen to it. (Click on the triangular play button to start the video)





The observant amongst you will have noticed I haven't created links for the various medical terms I have used above like I usually do. The reason is pure idleness and the fact that it's time to go cook my tea. Regular readers will hopefully be familiar with the terms but it has given me the idea of creating a page under the useful links section of this blog with a glossary of the technical bits to save me having to reference them each time.

T + 69 Putting My Feet Up

Posted by raetsel at Monday, November 24, 2008

The usual sort of quiet weekend apart from I couldn't go round to Mom and Dad's for Sunday lunch because Dad's cold is still with him.

One thing I have been doing is taking opportunities to put my feet up, not metaphorically but physically to help with the swollen ankles. It does seem to help to have my feet up either on the coffee table or on the sofa when I am at my most sedentary i.e. watching TV.

Correspondence on the Subject of Apostrophes

My cousin sent me the following piece of advice about the use of apostrophes from the 1894 edition of Enquire Within


So things have clearly changed a bit since then, not quite so lazy and vulgar now to use apostrophes. The Cobbett that it refers to is A Grammar of the English Language by William Cobbet and you can read the whole 1832 edition online

What is Enquire Within ? I imagine I hear you ask, well as you can see from the front cover below it was clearly the google of its day (click to embiggen)

You can get a bit more info on Enquire Within at this wikipedia article.

T + 67 Attack of the Cankles

Posted by raetsel at Saturday, November 22, 2008

Well it's not quite a cankle but I have started to notice at the end of the day when I am getting ready for bed that my ankles have swollen a bit and my lower calves are quite hard and a bit tender. This fluid retention is almost definitely caused by the amlodipine blood pressure medicine I'm on to counteract the high blood pressure caused by the ciclosporin (which I'm on to prevent my donor cells attacking my body. All together now: "I know and old woman who swalloed a fly" )

The swelling is not particularly bad but it is noticeable and the tenderness is bearable quite easily so though I'll mention it to the doc when I go to the transplant clinic on Wednesday I don't think I'll need to change my medication. I think the problem is exacerbated by being very sedentary, especially in the evenings when I am watching a film and not moving my legs for a couple of hours. I might try keeping my legs elevated by resting them on the coffee table and see if that helps.

I guess a bit of gentle exercise such as walking might help as well and I could certainly manage it now that my haemoglobin has been topped up with my last transfusion. Mind you the weather is hardly conducive to going for a stroll.

T + 64 Colds to Left of Them, Cold to the Right of Them

Posted by raetsel at Wednesday, November 19, 2008

I'm just back from the transplant clinic and everything is steady as she goes. I got an early appointment this week, 08:45 , after last week's long delays. I've kept that time for next week as well. It means I have to get up early and battle a bit of traffic getting in to Birmingham but it also means I have more of the day to myself after the clinic and it's good practice for having to get up when I start working from home again and need to be at my computer for 08:00.

As I say everything was fine at the clinic. My counts are doing well so I don't need any more GCSF at the moment. My white cells were 6.3 , my neutrophils were 4.4 and my haemoglobin was up to 11.3, after my transfusion last week. Whether the white cells and neutrophils were up because of the last few drops of GCSF or my bone marrow is kicking up a gear I'm not sure. I guess I'll see how they are doing next week.

Whilst I'm fine everyone around me seems to be getting a cold ( and/or sore throat and cough). My Brother, my Dad and my friend Andy all have colds at the moment and even a handyman I was getting to come in to give me a quote for re-tiling the bathroom had to cancel as he got a cold and I'd warned him about my condition and the need to avoid diseased people. ( Harsh but fair. )

I discussed what to do if I think I am getting a cold with my consultant. Basically if it's just a runny nose then I need to let the clinic know the day before I am due to go so they can put me in a side room on my clinic day and also take a nasal sample to make sure it's not the start of the flu. If I have any sort of cough or sore throat then I need to phone up right away and most likely go in to get some antibiotics and have some blood cultures taken.

It does make me a little nervous all these people getting colds. I feel there's a certain inevitability about me getting one. I usually get a cold at some point in the Winter months though perhaps since I'm not in general circulation I won't this year.

Some Musings on the Apostrophe

As you may know I'm a bit of a cunning linguist on the side ( ooh Matron!) and am fascinated by the intricacies of language, both English and foreign . Typing the word flu earlier in this post gave me pause for thought about the role of the apostrophe to indicate abbreviation or contraction.

Until quite recently whenever I refered to a phone in writing I would always write it as 'phone just as a sort of mental reminder that the original word was telephone and perhaps in some way keep that word alive. I was wholly inconsistent in this role as a curator of truncated words and would rarely if ever write photo' when referring to photograph. Of late I have dropped the leading apostrophe before phone as it seemed like a bit of an affectation.

Flu however is rather interesting as it is derived from influenza and so has both a pre and post contraction, as it were. If I were being (a) consistent and/or (b) pedantic it I would write it as 'flu' with both leading and trailing apostrophes and then the word looks like it is in quotes rather than having contractions. According to the online etymology dictionary, the word flu first occurs in 1839 and I wonder if it was written with the apostrophes then?

These apostrophes almost act like the writing on tombstones marking the death of a word and gradually with the passing of time and erosion from the the linguistic weather they wear away until the original words like telephone and photograph decompose in unmarked graves. Now to paraphrase Mark Twain, reports of the death of telephone and photograph have been grossly exaggerated but I wonder what words we use today are contractions of longer words which we are now not even aware of.

You see these are the sort of things I think about when I have too much time on my hands.

T + 62 The Treacle Stick

Posted by raetsel at Monday, November 17, 2008

I had the usual quiet weekend watching a couple of films back at the flat ( Starship Troopers and The Life Aquatic with Steve Zissou. Quite contrasting but both good fun in their own way) and popping to Mom and Dad's for lunch on Sunday.

The only real "highlight" was receiving my payslip in the post from CEVA. ( We get paid of the 15th of the month in a two weeks in advance, two weeks in arrears arrangement. ) I've now used up all 60 of my full pay sick days and about to, as my Dad would say, go onto the "Treacle Stick" namely standard Statutory Sick Pay (SSP) of £75.40 a week.

This latest payslip came in at about half my normal rate as I tipped over the 60 days. I don't quite follow how they have worked out the amount, but given I was expecting a lot less, far be it from me to question my elders and betters in the payroll department. I put it down to that two weeks in arrears, two in advance, it always confuses things like this. Next month I'm expecting it to be just the SSP of £301.60 or thereabouts.

Now £300 a month is not a lot to live on but I have been planning for this day over the last twelve months and making overpayments on my mortgage so I can use the surplus to cover that and generally trying to save more money where I can to tide me over. So don't worry folks I won't be tossed out into the street on Christmas Eve by some top hat wearing, moustache twirling villain from the building society.

Hopefully I'll be back working from home again in the New Year and earning a full wage so the damage won't be too great.

As for the phrase "treacle stick" well it's something my Dad uses for any sort of benefit payment and it seems to be something of a Midlands phrase. Here is a link to a definition of it in a dictionary of jargon which puts it down to being from market traders. Other google searches for it turn up various entries in the letters pages of local newspapers from the Midlands and Worcester.

I've come across two possible derivations, one is that the treacle stick is sticky so you never get off it, the other is that treacle was sold by scraping it out of a barrel using a stick, at the end of the day the stick would be given to a small child as a freebie. The second derivation is more appealing but I suspect the former is more accurate.

T + 59 Pay Back Time

Posted by raetsel at Friday, November 14, 2008

Yes after giving over a dozen tubes of blood on Wednesday, Thursday was my turn to get some back when I had my thirteenth through fifteenth units of blood since May this year. When you add them all up like that it's a bit scary really. Huge thanks to all you blood donors out there, as they say at the awards ceremonies, I couldn't have done it without you.

It was a fairly routine session really. The only "entertaining" part is fitting the cannula as I no longer have access via a hickman line. One of the chemo drugs I had earlier in the year, Methotrexate, is notorious for ruining your veins as far a getting blood into or out of them is concerned. I used to have quite good veins but now when you look at my arms you can hardly see any. However the nurse managed to fit the cannula on the first attempt though she admitted she couldn't see the vein she was aiming for or really feel it either so it was a bit of a speculative shot.

After that it was just a question of sitting and waiting for the blood to go through. Having arrived at 09:15 and getting hooked up at 09:50 I was back home by 16:00 already feeling the benefit of the extra oxygen carrying capacity of my blood.

T + 57 Like a Pin Cushion

Posted by raetsel at Wednesday, November 12, 2008

Well the transplant clinic was as bad as I'd feared as far as delays were concerned and the situation was exacerbated by the fact they were two doctors short. I arrived at 10:30 for my 10:45 appointment and was seen about 12:15, still I was well prepared so it wasn't a problem.

What I was less prepared for was being stabbed three times for blood. I went in to the phlebotomists' room on arrival and had about 10 tubes of blood taken. The reason there are so many is because I am providing samples every two weeks for a study into Graft Versus Host Disease. I took my seat in the waiting room and then was called back in as the new phlebotomist hadn't done four other tubes that were needed so I got stabbed again.

I then went in to see the consultant. My counts were pretty good, white cells up to 3, neutrophils up to 2.1 , haemoglobin is still dropping but my transfusion tomorrow will take care of that for a bit. As my neutrophils are well above 1.0 now I don't need any more of the evil GCSF injections this week but we discussed my funny turns and next time I need GCSF I will be given a different formulation of the stuff than the filgrastim I have been taking.

The consultant gave me a transfusion form for to pass to the nurses to put in the tube of blood for cross matching by blood type. Unfortunately the new phlebotomist had mislabled the tube earlier ( putting my NHS number on instead of my hospital reference number ) and for obvious reasons the transfusion service will reject any tubes that don't have all the correct details on. So I was stabbed for a third time.

After that I saw the pharmacist to get topped up on some of my drugs but rather than wait the 45 mins for the dispensary I arranged to pick them up tomorrow when I am there for my transfusion.

Non-medical bit to follow.

The Book Meme

I got this from one of the blogs that I read, Jono Bacon

The rules for this meme thing are :

  • Grab the nearest book.
  • Open it to page 56.
  • Find the fifth sentence.
  • Post the text of the sentence in your journal along with these instructions.
  • Don’t dig for your favorite book, the cool book, or the intellectual one: pick the CLOSEST.
So here is the sentence:-

"A play for our times in the Trinity lecture theatre."

Taken from "The Liar" by Stephen Fry. ( I'm not obsessed really).

I'm now supposed to "tag" five other bloggers I know and ask them to do the same. Unfortunately I don't personally know five people with blogs so I'll do the best I can and tag people I know read this blog. If you don't have a blog you can post a comment on this blog.

Tig you're it:-

T + 56 Getting Ready for the Long Haul

Posted by raetsel at Tuesday, November 11, 2008

Tomorrow I am at the transplant clinic but I couldn't get my usual appointment slot of 10:00, instead I have a later one of 10:45. Given that the time you actually get seen slips more the later you are because of how appointments overrun , I'm expecting quite a delay tomorrow.

Add to this the fact I'll need drugs from the pharmacy which is another hour and I'm going to be at the hospital for quite a while tomorrow and again on Thursday when I am having three units of blood which will take about four or five hours.

So to cope with this I'm getting prepared for things to keep me occupied. I haven't listened to any of my usual podcasts this week and will take them loaded up on my iPod. I'll have my book with me, The Algebraist by Iain M Banks and as I am getting down to the last 100 pages I'll probably take a slim volume of short stories and a magazine to give some variety and make sure I don't run out.

Item one on the agenda with the doc tomorrow will be GCSF and my funny turns.

Now for a non-medical item.

I-Robot

As you know I am a great one for gadgets and, with the exception of ironing, not a great one for household chores. Therefore it was great to combine these two things a couple of years ago and purchase a Roomba robotic vacuum cleaner made by the company I-Robot. This is a great little device that moves around a room cleaning as it goes. It's front part is a bumper that acts a sensor and when it bumps ito an obstacle it works its way round. You can see a video of it in operation here.

I had to buy a new battery for Robbie ( not a very original name I know ) recently as the old one wouldn't hold a charge anymore. Whilst surfing the 'net to find a good price I was reminded that the company I-Robot also makes "tactical" robots used for controlloed explosions and bomb disposal by the military. No really they do, look at the range available here.

Now you wouldn't want to make a mistake in that company's despatch department, would you?

Picture the scene, a hot and dusty road in downtown Baghdad, a US patrol is advancing cautiously forward. The sargeant signals a halt as he spots an old truck ahead parked badly by the side of the road.

"Control, this is patrol Red-1. We have a suspicious vehicle in sector 7G. Query IED?"

A burst of static and then the radio crackles a reply.

"Red-1, this is Control. Roger that. Prepare to deploy the PackBot to disarm device"

The sargeant calls up the jeep from the back of the patrol and two GIs start to unpack the robot from its case.

"Sarge, this robot looks kinda small" says one of the GIs squinting in the sunlight.

"Yeah well you know the lab boys always making things smaller. Now set that baby moving so we can get on"

The robot sets off towards the truck, sweat drips off the faces of the troops as they watch nervously from behind the jeep.

"Sarge, the robot's getting kind of close to the truck. Sarge I think it's going to bump into....."

BOOOOM!

Meanwhile in Newport, Rhode Island, Dale Swanson takes delivery of a present for his wife

"Marcia? Come take a look at what I got you. Something to help with the housework"

Wiping baking flower on her apron, Marcia Swanson enters the lounge.

"Now Dale is this another one of your expensive gadgets that won't work?"

"No Marcia this is a great little robot to do the hoovering for you. Help me lift the box off it."

"Dale that does look an awfully big ugly old thing. Are you sure about this?"

"Well it does look kinda different to the one of the infomercial. They must have updated it. Anyway just watch this baby go." Geoorge triumphantly presses the start button.

"See how it's working round the room? It's reaching right under the sofa and see, oh hang on what's that it's doing? Extending some kind of arm..........."

BOOOOM!

T + 54 GCSF = Generate Considerable Sickly Feelings

Posted by raetsel at Sunday, November 09, 2008

Well I took my GCSF injection last night around 22:00 the same time as I did on Wednesday when I had no reactions at all. By 22:30 I was on the loo and feeling like I wanted to be sick as well, along with the feeling feint and cold sweats.

The feelings eased after about 20 minutes or so and at least I could just go straight to bed. I slept fine and apart from feeling a bit tired today I have no "hangover" from the reaction.

It's odd that on Wednesday it was ok in the evening but last night it wasn't. I wonder if it is some how food related either in terms of what I have eaten or how much and when.

I'll see what the doc says on Wednesday at the transplant clinic and whether it's worth trying the alternative to GCSF. If push comes to shove I could just put up with the funny turns. They are not pleasant but half an hour once or twice a week isn't too bad I suppose.

T + 53 A Little Excursion

Posted by raetsel at Saturday, November 08, 2008

Well no more funny turns after switching my GCSF injection to the evening on Wednesday. I'm due another one tonight and hopefully that will have the same lack of effect. I've been feeling a bit more tired these last few days and have had a few very light twinges of bone pain but nothing like it has been when I have been on higher doses of GCSF before.

On Thursday lunchtime I had a little excursion. For the first time since August I went somewhere other than the hospital or my Mom and Dad's house. I made a visit to my good friend Andy.

It was great to see him face to face ( he's had to keep away from visiting because one or other of his nearest and dearest has had a cold these last three weeks and whilst he himself has been fine he didn't want to risk being a carrier).

I stayed for a couple of hours and we had lunch and a good old chat about subjects many and various. It was really nice to get out of the flat and somewhere different and I always have a enjoyable time at Andy's.

T + 51 More of the Same

Posted by raetsel at Thursday, November 06, 2008

I went to the transplant clinic yesterday and told the consultant about my funny turns which seem to be triggered by the GCSF. He said he had heard of someone on the ward recently who had had a reaction to GCSF but as it was not one of his patients he didn't know exactly what the reaction was. He said he would ask the pharmacist for the details. He said he did know they switched the patient to an alternative drug and that was tolerated better so that could be an option for me if the funny turns persist.

My neutrophil count was back up to 1.2 from the 0.8 it was last week so the GCSF had done it's job, however the doc felt to maintain that level I needed to continue with two GCSF injections this week as well. We agreed I'd try taking them at night rather than in the morning and see if that helps.

Aside from that my haemoglobin continues to drop slowly so I am booked in for another transfusion for Thursday the 13th November. It will be three units so I'll be on the day unit for most of the day.

Everything else , liver, kidneys, ciclosporin levels were all fine so I don't have to go to the day unit on Friday or Monday for bloods, just back to the transplant clinic next Wednesday.

I took my GCSF injection last night about 21:30 and I haven't had any reaction to it so far so let's hope this new time of taking it will stop the funny turns.

T + 48 Another Funny Turn

Posted by raetsel at Monday, November 03, 2008

Well Saturday morning I was due another injection and as I sort of expected I had another funny turn. The sequence of events was the same: take usual pills, 30 mins later have GCSF injection, have breakfast, go to loo, have funny turn.

The same symptoms, the cold sweat, feeling feint, fast heart and feeling sick. Except this time I did actually throw up. The feelings passed after 10 minutes as before and then I just needed a nap for a couple of hours.

So it looks like the culprit is the GCSF injection in tandem with some of the drugs I'm taking or my new blood system. I was fine Sunday and today when I didn't have to have an injection. I've had all the injections I'm supposed to so far so hopefully my neutrophils will come back up and I won't need any more.

I'm off to the day unit for usual bloods today and I will mention my funny turns to them to see if they have heard of it before.

My energy levels are a bit lower than usual and this is probably due to my haemoglobin levels being low.

T + 45 A Bit of A Funny Turn

Posted by raetsel at Friday, October 31, 2008

Has it really been four days since I posted a blog entry? Sorry about that, though I do have a good excuse for yesterday, more of which anon.

On Wednesday I went to the transplant clinic. It was fairly routine but my neutrophils had dropped from 1.1 to 0.8 and 1.0 is seen as a cut off value. So the doctor prescribed some GCSF injections to help boost my counts. Only two injections one Thursday and one Saturday so hopefully the bone pain I often get with GCSF shouldn't bee too bad.

It's perfectly normal for my neutrophils to fluctuate a bit, one of the drugs I take, septrin, depresses the count anyway and it's possible my body is just fighting a bit of an infection. Overall the doctor said my progress was fine and we had to remember this was only day 43 post transplant.

My haemoglobin was 9.6 and the cut off area for a transfusion is around 10.0 so the doc said he would need to keep an eye on that.

Well yesterday I had a bit of a funny turn. I was in the bathroom washing my hands after having gone to the loo and I start to feel feint, my heart rate went up, I felt like I was going to throw up and I came out in a cold sweat.

I had to sit down with a bowl in front of me for five or ten minutes until things settled down a bit. I had a few dry retches but wasn't actually sick however that did start to make me feel a bit better. The best way I can describe it is how you can feel when you have really exerted yourself at a sport and get that sick feeling ( not that I have done that for a long, long time).

I did my temperature ( normal ) and my blood pressure which was a little lower , 112/77 but not massively so. My pulse was 99 which was a bit high.

From then on it was like someone had flicked a switch and turned off all my energy. I felt really tired and simple tasks like putting my socks on got me really out of breath. I had a couple of naps during the day and just spent the rest of the time like a pink floppy sandbag on the sofa letting the TV wash over me.

Today I feel quite a bit better. I have a bit of a headache and my energy levels are not what that have been but more bearable than yesterday.

I'm not sure what caused my funny turn. Maybe I stood up a bit too quick and my blood pressure went wonky. It was 20 minutes after I had given myself my GCSF injection but I've never had a reaction like that before.

I think my haemoglobin may have dropped some more as I have that kind of tiredness now and maybe that is the main cause of the problem.

I'm at the day unit for regular blood tests on Monday so we will see what they show. I'll be taking it very easy over the weekend that's for sure.

All this has been a timely if unwelcome reminder that I'm still in the early days of a long process of recovery and I can't take for granted feeling fit and healthy every day.

T + 41 And Another Thing.........

Posted by raetsel at Monday, October 27, 2008

I went to the day unit today to have my blood tests done as usual then had lunch at Mom and Dad's whilst trying to fix his wireless router that is apparently no longer wireless. (Amazon are shipping a replacement out now. )

I've been thinking a bit more about this blog and the sort of stuff I put in it, particularly as at the moment things are ticking along very well and there is not too much to report on the medical front.

Therefore now and again I thought I might crave your indulgence and use this space to mention a few other things that I'd like to share with you that are not directly related to the lymphoma.

I'll try not to make this too much of a soap box or a "you know what really winds me up" sort of a grumpy old man page. ( Though I'm sure I'll feel the need to have the odd moan that I just can't keep to myself. As Stephen Fry recently said in one of his podgrams this is akin to Midas' Barber [ scroll right down to the last story on that link about Midas and Apollo] )

I'll always cover the medical stuff first and then have a separate sub-heading for the "op ed" piece so you know when to stop reading if you only want to know the lymphoma stuff.

And so......

Nuclear Insurance

I've had my Smart Car, Arthur ( for he is only 'alf a car ), for just under three years now and the extended warranty I took out at the time will expire in November. Therefore I contacted Mercedes Benz to see about extending the warranty. It took a couple of reminders but they eventually sent out the details for renewing the warranty for one year.

The cost for one year is £369 which to my mind is far from cheap. Reading through the list of exclusions I decided it didn't represent value for money and I am not going to extend the warranty. I will instead put my £369 into a fund for repairs should they arise.

One of the exclusions however did give me pause for thought:-

Loss or damage caused by the following:
  • Ionising radiation or radio active (sic) contamination from any nucelar fuel or the nuclear waste arising from burning nuclear fuel.
  • The radioactive, toxic, explosive or other dangerous properties of any explosive nuclear equipment or nuclear part of the equipment.
You just have to wonder what set of circumstances led the Mercedes Benz legal team to feel it necessary state this exclusion.

If Arthur were to be damaged by a nuclear explosion I doubt getting him repaired would be that high on my list of priorities. I suspect my own health might come first ( Hmm I wonder if BUPA cover me for nuclear damage? I bet not ).

Mind you maybe I should look at lining the garage with lead to be on the safe side.











T + 39 And Another Little Pill

Posted by raetsel at Saturday, October 25, 2008

I had a call late on Thursday from the main BMT doctor saying that my ciclosporin levels were a bit low so I have increased my doses from 150mg in the morning and 175mg in the evening to be 175mg for both. A small adjustment so I shouldn't notice any real difference.

Yesterday I cooked a very nice shepherds pie with lamb mince and we have some left over for tonight's supper.

If I tell you that today started with sausage baps for breakfast in bed at 10:30 then it gives you an idea of the sort of lazy day I have planned. Mind you I did get the washing and most of the ironing done yesterday.

T + 37 Another Little Pill

Posted by raetsel at Thursday, October 23, 2008

I went to the transplant clinic on my own yesterday and on the whole everything is going well, my haemoglobin is holding around 10.4 and my platelets have recovered to normal limits. My neutrophils are staying around 1.2 but one of the drugs I take, the anibiotic septrin, is known to suppress them. My white cells are around 2.1 and again the ciclosporin is responsible in part for keeping these values low.

The doctor has been checking my blood pressure each week and noting it was a little high, I also took along my own readings that I have been doing during the week. This increase is almost definitely caused by the ciclosporin I am taking so he decided to start me on a low dose (5mg) of a blood pressure drug called Amlodepine . I had some of this when I was in hospital and it was fine. It's known to work well with reducing blood pressure rises caused by ciclosporin.

There is one main possible side effect which is swollen ankles caused by fluid retention. Unfortunately this doesn't respond to diuretics so if this becomes a problen they will have to look at an alternative. Hopefully this won't be a problem for me but if I start to develop cankles then we'll have to take another look.

I was hoping to come off one of my drugs, acciclovir the anti-viral drug, as my leaflet said I would only be on that for 35 days after transplant, however the doc said that although I could come off it if I wanted there is some evidence to suggest that it helps protect against getting shingles .

Since I don't have any side effects from taking acciclovir I've decided to stay on it for the time being.

T + 35 On My Soap Box

Posted by raetsel at Tuesday, October 21, 2008

As things are ticking along ok so far on the whole lymphoma front perhaps you will indulge me a little whilst I get on my soap box a moment.

My friend Andy sent me a link about the Atheist Bus Campaign which, as explained here, aims to raise money to advertise an atheist/humanist slogan on some London buses to counter the religious advertising from things like the Alpha Course.

The slogan they are going with is “There’s probably no God. Now stop worrying and enjoy your life.” Now to my taste that is a little weak and I would prefer "There is almost definitely no God" even so I think this is a worthwhile cause.

You can help support the campaign by donating at JustGiving and read more about the campaign on the BBC News site, here

Two more quick plugs, check out this excellent book by Richard Dawkins, "The God Delusion" and check out RichardDawkins.net as a whole for thought provoking articles and videos.

Thank you for your time. ;o)

T + 34 Grab Yourself a Bargain

Posted by raetsel at Monday, October 20, 2008

Well the traffic was a little sticky but I drove to the hospital for my bloods today with Dad in tow. It was all fine and I was back at Mom and Dad's having a cup of coffee by 11:15

Since then I've been back at the flat doing some work in the despatch department of Gareths' CD Emporium. He's selling off some of his old CDs at Amazon. Check out Gareth's CDs to find a bargain, most are only 50p or a pound plus P&P.

Printing the postage and packing half a dozen CDs or so in jiffy bags each day is just a nice little activity for me and it means I get a walk to the postbox as well.

Wednesday is the transplant clinic and the plan is I'll go on my own this time.

T + 33 Domestic Weekend

Posted by raetsel at Sunday, October 19, 2008

Nothing much to report this weekend really, just a nice relaxing time at the flat, though the washing is all done and most of the ironing too. The food shopping is also done courtesy of Tesco.com due for delivery on Monday evening.

I'm off to Mom and Dad's for an evening meal rather than the usual Sunday Lunch.

Tomorrow I'm at the day unit for bloods in the morning.

T + 31 Activity Day

Posted by raetsel at Friday, October 17, 2008

Well I never got a call from the hospital about my ciclosporin levels yesterday or to confirm when I need to go to the day unit for bloods so I booked myself in for Monday bloods and later spoke to one of the haematology nurses to find out what was happening.

I didn't get a call about ciclosporin levels yesterday because my level had come back up to the right point based on my Wednesday blood test, (whereas it was a bit low from last Monday ). So it is steady as she goes and see if I am fluctuating still on Monday.

Aside from that today has been a bit of an activity day. I drove Arthur for the first time in about six weeks. Popped over to Mom and Dad's for a coffee and a chat ( and to scrounge an onion for tonight's spaghetti bolognaise ). The plan is that on Monday I'll drive and pick Dad up as we go to the day unit. This is a trial run before I go on my own so if for some reason I don't feel up to driving back Dad will be there to take over. Hopefully though it won't be a problem.

I've also been doing a little light exercise on the Wii Fit The balance games and yoga poses are just the right level of exercise for me at the moment and maybe I'll build up to the more aerobic exercises over time. I certainly enjoy doing yoga again. I used to do it quite regularly on my own and got quite flexible, it would be good to get back to that level again.

For great spoof trailer for the Wii Fit check out this You Tube Video

T + 29 So Far So Good

Posted by raetsel at Wednesday, October 15, 2008

Dad took me to the transplant clinic today and I saw the consultant in relatively quick time, only 30 minutes past my allotted time of 10:00

The consultant said that things were going along fine and my counts were where they should be. My haemoglobin has gone up to 10.4 thanks to the transfusion on Monday. He said the ciclosporin levels in my blood were a bit low so I will probably get a call tomorrow to increase the dose.

He also said we should be able to cut my hospital visits down to twice a week, Wednesday for the clinic and then either Monday or Friday for blood tests in the day unit but not both.

T + 28 Shake, Rattle and Roll

Posted by raetsel at Tuesday, October 14, 2008

Well the blood certainly seems to have helped out my energy levels. I managed to iron all the shirts last night finished off the other stuff this morning. I've also been for a walk up the hill to the post box by the post office without feeling too tired at all, whereas before the transfusion just getting upstairs into the flat was enough to tire me out.



I thought I'd say a little something about the medication I'm taking at the moment. Here's a pic ( click to embiggen if you really want to look at the pills in depth).


From top to bottom they are:-

  • Magnesium Oxide x 2 , three times a day to counteract magnesium loss caused by ciclosporin
  • Penicillin x 1 , twice a day to protect against bacterial infection
  • Co-trimoxazole ( aka Septrin) x 1 twice a day Monday, Wednesday and Friday only, another prophylactic antibiotic
  • Acciclovir x 1 four times a day to prevent viral infections, especially the cold sore virus
  • Ciclosporin 150mg Morning, 175mg Evening the anti-rejection drug to prevent Graft Versus Host Disease
Most of these I'll only be on for three to six months or so but the penicillin is something I will be on for life. A small price to pay really.

On top of this I use my celluvisc eye drops three or four times a day to help my dry eye syndrome and of course have to drink three litres of fluids a day to protect my kidneys from the ciclosporin.

I have a very handy multi-slot pill box labelled with the days of the week and the four times slots of morning, lunch, evening and night. I only fill this up one or two days in advance though so as to keep the tablets fresh.

It's transplant clinic tomorrow.

T + 27 Topped Up

Posted by raetsel at Monday, October 13, 2008

I'm just back from the day unit having had two units of red blood cells. I've now had 12 units in total since April of this year. ( You have considered becoming a blood donor, haven't you? ;o)

I'm still type O+ at the moment, the switch over to my donor's blood group ( A+ ) usually happens some time around 120 days after the transplant. Mind you since O+ is the universal donor, it wouldn't do any harm to have O+ when I do switch to A+

I'm back at the flat now just taking it easy, though I might see if the new red cells mean I can iron more than one and a half shirts at a time.

Next appointment is the transplant clinic on Wednesday.

T + 26 Plumber's Mate

Posted by raetsel at Monday, October 13, 2008

Just a quick note. Sunday was mostly taken up with a plumbing emergency after the flush on the loo broke so it wouldn't lift the bung to let the water out. Gareth stepped into the breach and fitted a complete new float based cistern set which he got from B & Q.

I'm typing this on Monday morning ( T + 27 ) so now I am off to the day unit for my two units of blood. I'll let you know how I get on later.

T + 25 Hair We Go Again

Posted by raetsel at Saturday, October 11, 2008

Oops forgot to do a blog entry for yesterday. Well it wasn't that exciting ( unlike all my other posts :o) Dad took me to the day unit to have my bloods taken including a cross-match for my blood transfusion on Monday.

I asked if I could take regular antacid and trapped wind remedies as I tend to suffer a bit with that in the evenings. They said yes over the counter stuff was fine so between Dad and Gareth I now have selection of Gavascon, Remagel, Tums etc. to see what helps.

After the day unit I had lunch at Mom and Dad's and then came back to the flat and just did a bit of pottering about , reading and napping.

I had a lie in this morning until 10:00 and then we had a visit from Andy about 11:00

Oh the other thing I meant to mention was that my hair has fallen out again. It started whilst I was in hospital and on the last Friday I was in hospital Dad brought my clippers in and trimmed it all off. Since then I have had a wet shave and got rid of the last of the patchy fuzz. I still have my eyebrows and eyelashes at the moment and hopefully in about four ot five weeks my hair should start to grow back.

The rest of the day is generally planned to be very lazy, well for me at least, Gareth is planning a cleaning spree, apparently.

T + 23 Steady as She Goes

Posted by raetsel at Thursday, October 09, 2008

I've had a quiet day at home today. I tried to do a bit of ironing but after one and half shirts I was defeated so I settled back on the sofa to read some more of the rather fun Oscar Wilde and The Candlelight Murders, which is a victorian murder mystery with Oscar Wilde as the detective.

I did manage a walk to the post box at the end of the road, a round trip of a hundred yards I would think, to post a couple of letters and it was nice to get a bit of fresh air in the Autumn sunshine.

I had a little nap in the afternoon for half an hour or so before Dad came to pick me up to go to Mom and Dad's for tea as Gareth was going to his Mom's tonight and won't be back until 22:00. I could have driven myself to Mom and Dad's but they have both said that for the first week or two they would rather Dad did the chauffeuring.

I'm at the day unit tomorrow for regular blood tests plus a cross match for my probable transfusion on Monday.

T + 22 Transplant Clinic

Posted by raetsel at Wednesday, October 08, 2008

Today was my first transplant clinic, something that will become a regular weekly Wednesday visit.

Dad took me up as I am still not feeling up to driving, especially in the morning when I have my morning crash for an hour or so.

We got there for 10:30 and were seen by about 11:30. I'd had blood taken and they are able to get reasonably accurate instant results right there. The consultant checked how I was doing and had a general chat about how I had been since I had come out.

He went over my counts, which were as follows ( figures in brackets are the normal ranges expected in a healthy person )

White Blood Cells 2.1 ( 4 - 11 )
Neutrophils 1.2 ( 2 - 7.5 )
Haemoglobin 8.6 ( 13 - 18 )
Platelents 126 ( 150 - 440 )

He said the neutrophil and white cells are just about where he would expect them to be at this stage, my platelets are ahead of the game and by haemoglobin is low, making me officially anaemic. This is quite common as red blood cells are the most sluggish to recover after a transplant.

The doctor arranged for me to have a blood cross match when I go to the day unit on Friday so that I can have a blood transfusion of two units of red cells on Monday as an outpatient.

The anaemia will go some way to explaining the tiredness. Mind you when I was discharged on Monday my haemoglobin was 10.6 and the cut off for a transfusion is 10.

One of the things that could effect the value is the amount of fluid I am taking in which will to some extent dilute reading in the blood. So we will see what my reading is on Friday and whether I need to proceed with the transfusion on Monday, but my guess is that I will.

After seeing the doc the nurse sorted me out a sick note, took off the dressing and removed the stitches from where I had my line removed last week.

I was all done by about 12:15 and back at Mom and Dad's having lunch about 13:00

T + 21 Full Day Home

Posted by raetsel at Tuesday, October 07, 2008

It was great to sleep in my own bed. I got up about 08:30 and had a shower and then had to have a rest because of my customary morning "crash". My blood pressure drops and I feel really, really tired so I just have to rest for a while.

I watched a couple of shows I had recorded whilst I was in hospital and then Mom and Dad came over for lunch and stayed for a couple of hours. In the afternoon I managed to iron three and half shirts before I felt tired again.

I also prepared the potatoes and veg for tonight's dinner. Gareth cooked Ikea Meat Balls and the mild curry sauce with potatoes, carrots and broccoli. It was very tasty, especially the veg which I always miss when in hospital.

I also ploughed my way through the requisite three, yes three, litres of fluids. This is to protect my kidneys from the effects of the ciclosporin.

In the morning in my first transplant clinic at the hospital. Dad is going to take me as I'm not feeling up to driving in the mornings.

T + 20 Home Run!

Posted by raetsel at Monday, October 06, 2008

The doctors came round this morning and gave me the all clear to go home. As you can imagine I was delighted and just a little bit surprised as I thought I'd be in another day.

I had to have some magnesium in a 500 ml saline drip and then Dad came and collected me and I was back at Mom and Dad's by about 14:45 .

Gareth had booked the day off work in anticipation of this being the date four weeks after my admission which worked out perfectly. He came over to Mom and Dad's for about 16:00 having been to Ikea for more things for the flat and to stock the fridge and freezer with food. I got back to the flat just after 17:00

Gareth has been working hard on decorating the flat over the last four weeks in what little spare time he has had and it looks really great.

For my tea I had a small portion of gnocci with a tomato sauce it was nice to have something with some texture and flavour. I'm still taking it easy with food but my appetite is returning.

I'll probably post more about my whole hospital experience over the next few days.

It's great to be back.

T + 19 Improving (PG)

Posted by raetsel at Sunday, October 05, 2008

I had an improving day yesterday, the diarrhoea continues to improve and last night my temperature didn't go above 37.4 which hardly counts as a temperature at all.

One of the down sides to having my line out is not having easy access for blood tests or antibiotic injections so there was a bit of stabbing yesterday as my veins are quite poor because of one of the chemo drugs I had a while back which causes them to constrict.

The nurses managed to get blood out after about 4 attempts and late last night the doctor put a canula in the back of my right hand so I can have my antibiotic injection. It's not the most convenient place for a canula but with a tubigrip bandage over it it's not too bad.

I'm going through quite a tired spell now. After I had a shower this morning it sort of came over me in a wave, the way it does sometimes. I shall just have to take it easy.

T + 18 Watchful Waiting (PG)

Posted by raetsel at Saturday, October 04, 2008

Well yesterday I had hardly any diarrhoea and when the doctor came back to see me about 17:00 she said it was unusual for a GVHD induced diarrhoea to clear up so quickly so it was a bit of a mystery as to what it was.

She put me back on a normal solid food diet and switched me back to tablets of ciclosporin instead of the drip.

I had a good night's sleep and feel quite good this morning, the diarrhoea has come back a little and I'm still getting a temperature overnight. The weekend doctor said they might want to scan my chest again in case I have picked up a fungal infection since the last one.

Not sure what all this means in terms of a release date except that it won't be before Monday and I suspect a little later in the week.

T + 17 Lights, Camera, Action! (PG)

Posted by raetsel at Friday, October 03, 2008

Yesterday the doctor explained the plan of action to deal with my diarrhoea. Firstly I was put on a clear fluid diet, i.e. water ( or black tea or coffee but I'm off hot drinks at the moment ) no food at all.

Secondly because inflammation of the gut can reduce it's efficiency at taking up ciclosporin I was switched back to having it in a drip twice a day. This meant having a canula fitted in my arm as I no longer have a Hickman line.

Saving the best until last the doc said she would arrange a bowel biopsy to confirm or not the diagnosis of graft versus host disease (GVHD). This involves having a camera with swiss army knife style attachments inserted up my bum to take some tissue samples.

When this will be is not certain but as soon as possible.

I didn't have any diarrhoea yesterday at all and only a little bit this morning which the doctor was pleased about and might mean things are settling down. Today I am allowed bread and soup to see if that sets anything off.

I still had a bit of a temperature over night at 37.7 . Although my blood cultures haven't come back yet to say if I have a bug my general blood tests do not show any infection markers. This is another indicator towards graft versus host disease as that can cause fevers on its own.

I'd say the balance of probabilities is that it is GVHD and will need a few days steroid treatment before I can go home, but you never know.

Sorry there is so much talk about diarrhoea in the blog of late, but at least you only have to read about it and not live it. :o)

T + 16 Not Going Home Just Yet (PG)

Posted by raetsel at Thursday, October 02, 2008

A bit of a set back yesterday as around 17:30 the diarrhoea came back and it kept me up every couple of hours throughout the night. My stool samples came back negative however so it's not a bug causing it.

There are a two basic possibilities causing the problem now, either it is the effects of the chemo or it is the start of Graft Versus Host Disease (GVHD) where the donor immune cells are attacking my own body. It would be quite early to have signs of GVHD but not unheard of. GVHD is usually treated with steroids. (yum).

I had two lo-peramide ( immodium ) tablets in with my usual meds so this should help stop the diarrhoea in the short term.

Another slight complication is that I had a temperature this morning so blood cultures have been sent off as a precaution. I'm pretty sure it was just a blip caused by sleeping with too many bed clothes but we'll see what the results are.

I'm waiting to see the doctor to find out what the plan of action is. I'm pretty certain I won't be going home today and I suspect it may be the weekend at the earliest.

I have to say I was feeling pretty down about all this first thing this morning especially as I had come so close to getting out, but I'm trying to be positive about it and my slightly raised energy levels are helping me combat the low feelings. I have been moping about a bit the last 2 or 3 days without even wanting the radio on because of my low energy levels so today I am going to try to get a bit more stimulation. I did manage a walk up and down the corridor yesterday and will try the same today.

T + 15 Just One More Thing (PG)

Posted by raetsel at Wednesday, October 01, 2008

Having my line out sorted my temperature problems as expected. Yesterday I was mostly just really really tired but today my energy levels are up a bit hence being able to do this blog entry.

The only issue now is that I have started to get diarrhoea again , it came on yesterday afternoon and got worse during early hours of this morning. It's settled down now so far today.

A sample has been sent off and it all depends on what the results of that show. It could show a bug in which case I need an appropriate antibiotic and I've been started on Metronidazole already as a precaution. If the sample is clear and I don't have any more bad episodes I should be able to go home tomorrow.

The pharmacist has been to see me to talk through all the different drugs I'll be taking for the next couple of months. I'll go through all that another time.

Finally thanks to Andy for updating the blog for me yesterday.

Message from Simon

Posted by Andy H at Tuesday, September 30, 2008

Simon has asked me to make today's posting to keep everyone up to speed. He's doing fine, but is really tired so hasn't had the chance today to put finger to keyboard.

He had a CT scan of head and chest yesterday afternoon, and the results were back on the ward before he was. All the results were normal, which is another thing to tick off the list.

He heard this morning that they had found a 'slow growing' bug in his line, which could explain the unusual temperature spikes over the last few days. As he now has little need for it (apart from freaking out friends and neighbours by pretending to be Borg) they have taken it out this afternoon.

The upshot of these two pieces of news is that Simon should be home either Wednesday or Thursday, as long as everything else stays on track.

I think that's all the news that's fit to print and Simon will be back here shortly I'm sure.

T + 13 Busy Day Ahead

Posted by raetsel at Monday, September 29, 2008

I slept for pretty much 12 hours straight from 20:00 last night apart from a few breaks for having my antibiotic or popping to the loo. Even so I am still exhausted this morning and could sleep another 12 hours I'm sure.

The bone pain isn't too bad at all so far though it usually comes on worse after I have the day's GCSF injection, due in about 2 hours. I'm still running a temperature .

The professor saw me and said my progress was excellent, my counts are rising and that shows the transplant has worked. They just need to sort out this temperature and so today I am going for a CT scan of the chest and head , especially my sinuses as I do sound a bit nasal now and then.

The professor thinks it could actually be my hickman line causing the temperature spikes and there is no need for me to have it in now so that will be removed later today as well.

Once my temperature is sorted out I can go home so hopefully that will only be a few days away.,