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.


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....."


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..........."


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.