T + 8. Fuck that for a Game of Soldiers (# 1)

27/02/2013

27/02/2013
Hb:     8.3   (-0.1)
Wbc:  0.20 (+0.04)
Ntl:     0.18 (+0.4)
Plt:     15    (+8)

Weight: 80.2 kg

28/02/2013
Hb:     7.9   (-0.4)
Wbc:  0.11 (-0.09)
Ntl:     0.07 (-0.11)
Plt:     8       (-7)

Weight: 81.3 kg



I decided to amalgamate 27/02 and 28/02 because not a lot happened yesterday, I was pretty thoroughly doped up to relieve the mucusitis and spent the day sleeping or staring at things.

Events got a little more interesting this morning at about 5.30am when I woke up with a bad case of the rigors/shakes which kept up for about two hours. Temperature went up to 39.8 degrees and things got a little bit fraught - Nurse Mai whacked some Pethedine and Antibiotics into my Hickman, which to my huge relief stopped the shakes within about 20 minutes. I have never felt so out of control of my own body - there was nothing I could do to stop the shakes and my teeth nearly rattled out of my head. It's now midday and the cocktail of Pethedine and Oramorph is just starting to clear from my head - can feel the fogginess lifting by the minute. The thinking on what went on is that the steroids I'm taking have masked an infection of some sort, so I've had multiple blood samples taken for blood cultures to check into what caused the little episode.

Nurse Fatimah just came in to see me and it sounds like I'm getting a complete top up today  - a couple of units of blood, some platelets, magnesium and phosphates. As you can see from the figures above, apart from Hb all my other blood content is now pretty much shot away so hopefully its onwards and upwards from here on in (unless it's not hehehehehe).

I have got a dirty great big haematoma on my left arm from where they took some blood direct from the vein earlier today (rather than the Hickman)- it's a really strange matt dark purple colour like when an old person gets a black eye  about the size of the 'O' you can make by rounding your forefinger onto your thumb- and down to low platelets.

Although my tongue is till sore, I think my mouth may be getting a bit better - I had lumps right cross the roof of my mouth yesterday which have now gone and the painkillers seem to be lasting longer, which may hint at less inflammation in the first place - the tongue does however still look like an albino toad's back - yum. 

I applied to the blogging Adsense team to put advertisements on the blog in the hope of raising a little cash to donate back to MDS/AA causes but the buggers have knocked me back without leave to appeal. I was told to go away and read the terms and conditions governing content and can only assume that the references to pharmaceuticals and my love of Anglo-Saxon has pissed the snooty pricks off, although it's not recreational drug use and all instances of cussing are strictly necessary to convey atmosphere <ahem>.

There is another very easy way to donate if any blog readers would like to - via a text message to the Anthony Nolan Trust. These guys would have been my next port of call had my Sis not been found to be a suitable donor and their work is absolutely life saving. If you text the word Hope to 78866 then you will be making a one off no strings donation of £3 to the Anthony Nolan Trust  - it's all kosher and is advertised on the telly - not some little 409 scam that I've cooked up!

 

T + 7. Cooking with Jamie Nutkins (read T + 6 first)

26/02/2013


Hb:     8.5    (-0.9)
Wbc:  0.16  (-0.18)
Ntl:    0.14   (-0.17)
Plt:    7.0      (-1.0)

Weight: 79.8 kg


I'd like to start today's entry by thanking so many of you for taking an interest in the Chemo/BMT/ Recovery charabanc. The number of page views since 11/02 now stands staggeringly at nearly 2200 and as previously mentioned this blog was first intended to save me having to txt friends, rellies and assorted spawn over and over with the same updates and maybe to leave some useful pointers to those awaiting treatment. Instead it's become another thing entirely - and very therapeutic for me. One favour I'd like to ask is for feedback, there's some of this stuff, that even as I'm typing it, I'm thinking is this offensive - have I overstepped? and the Jamie Oliver bit was a case in point, I decided to run that by my wife and sister before I hit publish. So please do leave comments - even if it's only to ask for my original Adidas Starsky and Hutch trainers if I snuff it.

So just give me a minute here to climb out of my own arse and we'll get back to business.

My blood levels sure done tanked yesterday, even the haemoglobin has finally taken a hit - stuff is at the kind of level now where going to my sons nursery to collect him tonight from amongst all the smiley faced little petri dishes there would be about as good for me as licking a toilet seat in the Black Hole of Calcutta. Very high risk of infection due to low WBC and neutrophils and also risk of a bleed due to low platelets - fortunately risk in here is minimised.

Sorry to have to bring you this news queue people, but my mouth, throat and trachea(?) are pretty fucking painful now due to mucusitis. I was trying to avoid asking for the OraMorph painkiller too frequently, but have been assured they won't think I'm a junkie if I do and to ask for as much as I need to feel comfortable - I was on 2.5ml which was good for about an hour at a time and it's being upped to 5ml. Last night was a real bugger and I don't want to put up with that again so it's away with the rufty tufty and I shall in future be clucking for my next  fix along with the best of 'em.

Another rather weird aspect of mucusitis is the temporary destruction of the sense of taste as demonstrated to me by my choice of dress when I got up this morning;


Mucusitis - the side effects. And no it's not actually me  - fuckers.
 

Now my barnet was never my crowning joy - not for me a middle age/later life of distinguished grey flecked glory a la William Shatner (I know). I went from a mullet to a crop in about 1993 and have sported one ever since, with diminishing returns across the years as 'Widows Peak' became 'The Barnet Isthmus' - still just about connected to the mainland, to the current reduced circumstances of 'Hair Island' which is just about strung onto the rest of it by a manky old rope bridge. Snagglepuss Frankie calls it the tufted duck - which I rather like.

I know it's inevitable that chemo was going to make it fall out but I still had one hell of a shock when I spotted my scalp gleaming at me from the territory to the south of Hair Island, formerly thickly planted. If I leave things to progress normally it's going to go Terry Nutkins on me so it'll have to come off and Jeannette has agreed to bring the clippers in with her on the next visit. Mind you it's almost worth hanging on for that extra few days for the transformation to complete.

Imagine it -  the eye searing majesty of a fully formed Jamie Nutkins I could take the show on the road, touring the provinces knocking up Pacific Fusion and Modern Cuisine in the back of a caravan,- concocted from voles and badgers and crested grebes and shit, -  tongue lolling out happily- oh hang on I'm in an isolation ward. Anyway fairly soon I'll get some pics done of the spam when it happens - maybe with sidies left on for laughs.

One last Jamie Oliver story and I'm done - honest. I wonder how close to suicide he came the first time he tried to top up his phone by chatting to the robot lady at Orange. I just spent 8 or 10 sausage tongued minutes trying to get £20 on my moby in the end I had to pull my lower lip down with my thumb and forefinger to do something that sounded like English.

Hey ho - my Oromorph has just arrived it's time for Hendrix on the headphones again.

(edit 04/03/2013) Hello there - don't be one of the 66 people who has read this entry without reading Karma's a Bitch because a) a good 50% of what you've just read here will make no sense  and b) it means one of the pieces I'm proudest of languishes unloved at the bottom of the viewings chart like an unloved step kid. So go ahead and scroll back you young rascal and we'll hear no more about it. <ruffling your hair in an inappropriate swimming teacher manner> Nick x

T + 6. Karma's a bitch (and so is mucusitis)

25/02/2013


 Hb: 9.4     (-0.3)
Wbc: 0.34  (-0.48)
Npl: 0.31  (-0.43)
Pl:  8         (-4)

Weight: 80.2kg





A leprachaun with some platelets (pictured yesterday)

Well the numbers don't lie the drop off in blood content has been precipitous, I blew my nose this morning and started a nose bleed and if you've seen my nose you'll know that this could very quickly have become a life threatening scenario... anyway, it stopped after about 10 minutes or so and for once I forgot to mention anything about it. It wasn't until one of the nurses saw the bloody tissues in the waste that I was queried on it and in short order a bag of platelets arrived at my infuser and was gravity fed into me in pretty much straight away. Jeannette was present as I was loaded up and noted that it looked like I was being drip fed a bag of liquidised steak fat which sounds pretty damn good to me, so I've asked if she can sort that out for my birthday. Apparently bashes and bruises (especially bangs to the head) are very dangerous with low levels of platelets as the bleeds don't stop. So lesson learned.

Like many people, I have derived a lot of entertainment from Jamie Oliver over the years - not so much from his cooking or recipes, no, the source of my joy is the strangulated parpings that he  rolls out of his mouth like popcorn kernels with his big fat macaw tongue  - he truly is the love child of Keith Floyd and Freddie 'Parrot Face' Davis (google him).

The hint is in the title  - karma is a bitch - sore mouth phase entered new territory overnight - Jamie Oliver territory. My tongue has been swapped out in the night for a half a chipolata - flopping around my mouth like a punch bag. All of a sudden it's 'dher' instead of 'the' 'woowar' instead of 'rural' and 'thobbing at Thainthburyth'. It's amazing how finely calibrated the change is, it's not as if my tongue has trebled or even doubled in fatness, probably about 3mm of swelling all round along with a bunch of ulcers in the roof of my mouth but still enough to turn my normal 'Poor Mick Jagger Impression' of a speaking voice into that of the Tilbury Dough Boy.

Now please don't get me wrong, I admire the chap for all his work with 'Fifteen' and school dinners and trying to make a stand against 'Big Food' it's just that the times during which my sense of humour and culture were formed (70's and 80's) deemed that personal quirks were to be seized upon and mercilessly lampooned. As stated, having a rather impressive endowment myself (nasally) and a widows peak hairline (more recently rechristened hair island) meant that I got quite a bit of gyp from Fatlips Posh Chris, Shortarse Colin, Fat Boy Fat and Snagglepuss Frankie.

So no malice - just ripping the piss - I'm off to work on my wecipes for theamed withe now.

T + 5. Don't Tase me Bro

 24/02/2013


 Hb: 9.7     (+0.3)
Wbc: 0.82 (-0.31)
Npl: 0.77  (-0.24)
Pl: 12        (-7)

Weight: 79.5kg


I was going to duck back and update the 'Gumbo' post with some fresh information but for some reason the blog entry is locked and I can't edit it so I'll do it here. The chap I've been talking to through facebook is called Russell Cook, he had a similar jaunt (journey=arse) to me a couple of years ago although as you may have already read, his starting point was at a much much lower ebb than mine. He has since made a very respectable fist of recovery and is due to be running in the London Marathon next April to raise Money for Bone Marrow/AA/MDS associated charities. This is his give me your money page - www.virginmoneygiving.com/russellcook go there now and give him some of your benefits money (I know my audience - you like Jezza Bingo).

My tongue and mouth are starting to give me some serious gyp now, new sore patches and ulcers blossoming overnight as the chemo relentlessly chunters on and it's making eating the most delicious agony. Porridge wasn't a problem, but homemade marmalade on toast was something of a challenge. I knocked up a batch of rum and chili marmalade just before I came in and on balance the pain it caused me to eat it was only just outweighed by the pleasure it gave me to do the same. I had to nick off pretty sharpish to clean my teeth with the soft baby tooth brush to get the pointy bits of toast and chili burn off, but nothing had prepared me for what Listermint can do. To be fair, they do show the explosion going off in the model's mouth on the TV advert but I thought that was just a bit of artistic license. Fuck no!

My taste buds were all like 'Don't tase me bro!' 

Listermint was all like ' Yukumyukum you suure got a purty mouth thar boy'.

Obviously - it did not end well for me.

Meanwhile two of the orderly staff had taken advantage of the time that I was in the bathroom to duck in and change my bed (it's done every day) and they looked up, very concerned as I exited the bathroom asking 'What's the matter? - are you alright?  - are you upset?' Moi - 'No I'm fine why?' Ord- 'Why you cry so much then?' Girders me - GIRDERS!!!!!

Fortunately I am progressing along a well trodden path - plenty of people have been here before me, 120 a year, and the team have measures available which should allow me to happily munch on a bowl of pea gravel and toenail clippings should I choose. The first is a painkiller mouthwash called Difflan, swill 15ml around the mouth and spit every 90 to 180 minutes, does a wonderful job of numbing the poor ravaged oral tissue. There is another morphine based solution which is for the next level along and I'm not quite sure I'm there yet it's called Omlu or somesuch, maybe by the weekend I'll know.



Chemo Cowboy and friend

I've managed to get into my blackberry and transfer the pictures I've taken onto the blog - there's about a half dozen dotted amongst the entries and hopefully can add a bit more insight and colour.  And since I think it's especially important for people to know what I look like wearing a cardboard crapper as a cowboy hat I make no apologies for the repost. ENJOY.

T + 4. I am branded a peddlar of Dirty Filthy Pr0n Filth

23/02/2013


Hb: 9.4     (=)
Wbc: 1.13 (-0.44)
Npl: 1.01  (-0.40)
Pl: 19       (-13)

Weight: 79.8kg

Well I've been locked out of my own blog page for a bit - new experience. When I attempted to log in I was shown a screen which said that my access to the site had been blocked due to the unsuitable and possibly pornographic nature of the content.
Now I don't make any great claims for the content of the blog,  there are obviously quite a lot of instances of potty mouth, but unless your interests are incredibly niche I think you'd be pretty frigging hard pushed to describe it as pornographic. Finally managed to track down the help-desk at Newton Abbots in Devon and spoke to a fella called Shaun (not complaining - better than Tommy from Delhi) very sympathetic and very helpful, got me sorted within five minutes.

So things are moving on with the destructive side of the chemo. If you're paying attention to this side of the story (I am keenly) you may notice that the falls are quite steep now and one of the main areas that I'm noticing is loss of blood clotting. I want to carry on wet shaving for as long as possible, but I'm  finding that a couple of shaving nicks that would have previously gone unnoticed now make me look like Sissie Spacek at the end of Carrie. So a note back down the line for the queue, you may need a leccy shaver. Haemoglobin is unchanged (blood transfusions still holding) and the level is still at a rather pleasant 9.4 - well it keeps me happy anyway.

 I was warned about the effect it can have on the mouth, principally because in the normal run of things the cells in the mouth are very short lived and replaced regularly. I think the cyto-destructive (sorry <fnar> cell destroying) properties of the chemo extend to the gob and hence can make things a bit nasty,when either the cells are killed even more frequently or are not replaced in the normal timely manner.
Woke up this morning with sores or ulcers forming along both outside edges of my tongue, quite painful until you find a way to contort your tongue so that it doesn't rub along the inside of the teeth. Luckily the docs are straight onto this and my meds are being tweaked to take account.

Checking the shower base isn't yielding any barnet yet so the tufted duck look may still be a few days away I'm actually rather curious as to how I'll look with no kind of hair on my head or face at all - at least I have an excuse for the look, imagine if out of curiosity you were to shave your head, eyebrows, lashes the lot over the course of a weekend and then turn in at the office on Monday. It would be backwards cardy and bouncy wallpaper time before you could reload.

T + 3. That'll do pig

22/02/2013


Hb: 9.4     (+)
Wbc: 1.57 (-)
Npl: 1.41  (-)
Pl: 32       (-)

Weight: 79.9kg

Well it's been another full on day here at the sausage factory. As you can see from the readings above Haemoglobin is up which I attribute to the 4 units of blood I've had recently. Before the chemo, 4 units would have been enough to push me up to around the 10.8 count which for me is almost levitation point.

The other readings are predictably starting the downward curve that marks the demise of Bone Marrow v1.0.   Bone Marrow v2.0 has currently finished downloading, now unpacking, unzipping and establishing loading parameters - estimated time left to load......fuck knows - just hope I'm not running on Windows Vista. I've added another measurable (weight) to the list up top simply because it's recorded every day and may provide some insight into the loss of appetite and weight loss that I've been told to expect in the coming weeks.


Breakfast! I have about 3 lots of these per day.


It's a slightly detached, weird feeling to be hearing about plummeting temperatures across the country and to see occasional snow flurries whilst being kept at a constant 19 degrees a bit like 21 day aged steak at Sainsbury's - and not having set a foot outside for more than 2 weeks. Not that I'm too upset about it, now if it was later in the year and I was missing out on the 3 days of English Summer - well then you would hear some serious bitchin' guy.

T + 2 . 'Allo Mrs Jones, 'ow's your Bert's Lumbago?

21/02/2013

Hb: 9.1     (+)
Wbc: 2.03 (-)
Npl: 1.85  (-)
Pl:  41      (-)


After the high levels of activity and steep learning curve experienced in navigating the last couple of weeks it feels as though my little boat has crested the white water rapids and has made it to the BMT equivalent of the upper reaches of the Thames, where I am now laying back trailing a hand dreamily over the side - meandering limpidly from bosky dappled shade to lancing sunlight light as dragonflies warp in and out of view, occasionally raising my head into the buzzing air to glance downstream.

I was going to delete that, but thought it sounded so supremely poncey that it had to stay.

The message, however convoluted and poorly expressed is kosher though. All the clever stuff that needed to be done has been done and the job of the people here is to now keep me topped up with the anti-everythings while the gear they put in me last week does its job of either knocking down the old stuff or laying the foundations for the new.

I am still in quite good nick, the doc gives me the once over every day and apart from a couple of small mouth ulcers, a bit of water retention and the odd lavatorial adventure it appears I am doing at least as well as expected if not slightly better.

So, for the people in the queue - I have a fairly rigorous oral hygiene regime anyway, but have upped it in here - so it's teeth cleaned after every meal (not just first at last thing) then use inter-dental brushes to remove any bits the toothbrush can't get and then finally a damn good rinse with mouthwash. Bear in mid that I've been religious about this and have still got a couple of ulcers and you can appreciate how crucial it is.

T + 1. Get that Alien Spawn Baby out of my Neck!!!

20/02/2013.

Hb: 8.0
Wbc: 2.83
Npl: 2.65
Pl: 54

Very early start in order to get washed and hooked up to the morning threesome - NAC, Aciclovir and Ciclosporin. They have to be out of the way so I can be ready to go down to surgery for 11am to have my new Hickman Line fitted and in order to avoid a bleed I must also have a couple of bags of platelets.

I also had another two bags of O positive blood on top of the platelets and by the end of that lot I figure that I have the makings of a pretty good black pudding on board...

Turns out the early start was a bit optimistic as it was about twelve thirty when a porter came for me. Getting to the Op room was a bit more sensible this time out and I was in a wheelchair rather than the poor fella having to slalom my bed all the way down there.

It was however my first experience of heading out and about with the Michael Jackson style face mask on – not with his kid scaring face on it, just the germ stoppy one. This should ring a bell with anyone who’s had to wear one before and if you haven’t trust me on this, you do become a bit of a freak show – and I rather think immediately considered a bit weak and feeble and prone to some slightly pitying ‘he’ll be clocking out soon’ looks. I was almost tempted to jump out of the wheel chair and jog alongside it doing star jumps and high kicks to say ‘Not YET Fuckers!!!’

So there was a bit more hanging around and a consent form to sign then it was into the Ops room for another Hickman. My only moan about this is that you can’t see what’s going on – the area being worked on is shrouded in blue surgical dressing stuff which goes over your head and after the first couple of jabs of local there’s not even any sensation to guide you as to what’s happening. The gist of it is that a hole is made on the top right of your chest and a tube fed over the top of the pectoral muscle and clavicle then up into the neck to either a big vein or artery.

It was only towards the end when the tube was sliding up the jugular in my neck that I could feel anything, but very distant and if the guy on the other end of it hadn’t told me what the feeling was, well I wouldn’t have been any the wiser. There’s no cutting you open or anything, it’s all positioned using real-time x-ray and you are left with a couple of knitting needle size holes and maybe a stitch or two.

If you do have the Hickman Alien Spawn Baby fitted take care of it especially when showering do your best to keep it dry – I was a bit blasé about the first one and ended up making things more complicated than they needed to be. Everyone was very polite about it falling out and no fingers were pointed but it was in me and I was a dick for not being careful enough with it. It’s designed to stay in place for anything up to a year, so it’s a fairly hardy piece of kit once your body has formed scar tissue to hold it in place,- it’s just the first few weeks where the extra care is needed.

After another bit of hanging about it was back to the wheel chair and I pushed the porter back up to Waddington Ward at high speed– figured it was my turn.

Mai had all the rest of the bags set up and ready to run as soon as I got back, I think it was phosphates and ciclosporin and she very quickly pulled the CVC Alien Spawn Baby out of my neck, cleaned me up and got the Hickman plumbed in and loading.

Now post-transplant, since all the extra bags of stuff have been going into me I’ve noticed that my waistband has been tightening – and it turns out that I have water retention. At one point my stomach was a full-on water gut blocking my feet from view – GROSS so I was given a ‘water pill’ via the Hickman and told to prepare myself. Within 15 minutes I could feel my kidneys start to cycle up like turbos and shortly after that the pattern for the next two hours was set. Two litres sent off for recycling in 105 minutes not too shabby and I felt a hell of a lot better for it – however I’m not completely deflated and I rather suspect something like this may be needed every couple of days.

Another subtle change that I’ve just picked up on is that my face is filling out  must be from the steroids - I used to have fairly sharply defined cheek bones and I’m now seeing my face starting to round out. It’s OK at the moment but if it continues there’s a distinct chance that I’m going to turn into 'What's the scores George Dawes' when my barnet goes.

So T +1 done and dusted and I actually feel pretty great and healthy now the fug of the chemo is clearing from my head, however I’m keenly aware that none of it is down to self-propulsion yet and that I’m dependant on the baggies for my day to day well-being.

 

T - day (part two). Sitting in Jebus' Waiting Room (pictures)

I am more than happy to be able to tell you that the stem cell infusion took place today (19th Feb.) between 2.25 and 2.50pm. No flags and whistles or marching bands just me and Nurse Mai keeping a watchful eye on the pinky red bag of juice as it was gravity fed down the tube across my chest and into the CVC at my neck. They don't use the infusion pumps for this procedure for fear of damaging the stem cells, so a nurse is on hand throughout to make sure the precious goop doesn't log jam in the tubes - and if it does it is given a 'push' with a syringe of saline. The prep and premeds were just as involved as for chemo with the addition of the  JGJNEJ preservative* which will give my sweat the pleasant odour of sweet corn for the next few days, not that sitting on your arse in an air-conditioned room gives much cause for that.


Mid transplant note infuser running across chest to CVC in neck.


One of my friends suggested that I should have gone the whole hog and ordered a plate of asparagus for dinner tonight to complement the corn, but sadly it's not on the menu. I've spent the rest of the day sleeping whilst receiving a couple of units blood transfusion. The chemo continues to do its' job, as my existing manky blood production facility is gradually demolished to make room for the spanky new seeds to finds a bed and start to germinate. My haemoglobin level had dropped to 7.0 hence the need for a couple of baggies. To illustrate what is happening with my blood content and for future reference I will endeavour to include the 4 main blood measurables in each daily blog entry. Apologies for the lapse into Management Bullshit there...

They are as follows - definitions are as I understand them to be, not text book (I might stretch as far as a quick gander at wikipedia);

Hb (Haemoglobin): primarily found in red blood cells and used in moving and delivering oxygen around the body to where needed. I think it plays a part in giving 'caucasians' a pinky skin tone.
Usual count for women 12 -15 - usual count for men 13-16 

WBC (White blood cells): Count of white blood cells found in sample. Normal count range 4-11
White blood cells are responsible for attacking infection in the body.

(Pl.) Platelets: Responsible for clotting the blood. Normal count 150-400

(Npl.) Neutrophylls: A type of and most common WBC . Normal count 2.0 -7.5

When I came in to Kings a couple of weeks after a transfusion my levels were Hb: 9.4 WBC: 1.75 Pl: 68 and Npl.: 0.58.

I've had a couple of mails from people saying 'Great job -so you'll be out in what a week or so?' If only this were one of those sodding Hallmark life story films on Channel 5 that I've learned to avoid like a dogs eye sandwich, then we'd go all soft swirly and orchestral fade out with me running down Camberwell High Street in slow-mo to be reunited with my family in a triumphant group hug outside the Tennessee Chicken or the Dixie Fried Chicken or the Morleys Chicken and Burgers (sorry - South London joke there) but it's not.

I'm going to spend the next couple of weeks  relaxed on the outside, flapping on the inside waiting for news on stem cell engraftment. The fact that the stem cell infusion went off well isn't the end of the deal. We now have to hurry up and wait for up to 2 - 3weeks to be sure that the immuno-suppressants are preventing rejection and  for signs in the daily blood samples that things are working. Initially I can expect to see the blood content levels drop off as the chemo does its stuff which will also engender the destruction of the existing immune system, loss of hair and a lot of sleeping - a little taster of being 90 years old, I may even spout wildly inappropriate cultural remarks and begin telling all and sundry that they don't even know they're born these days...

The positive sign that the docs will be looking for is the re-emergence of the neutrophyl count in my blood which shows that the donor stem cells have set up shop and have commenced business. Then things boil down to how well I manage to avoid picking up infections - the nursing staff tell me no matter how careful you are that it's impossible to avoid illness of some form when  immunity is less than that of a newborn (even newborns inherit some parental immunities)  the only variable is to what degree. I've said I'm OK up to and including a hangnail or maybe even a verrucca but if it's anything more severe, then go for amputation.

I've been told that my CVC is to be replaced by a Hickman tomorrow and that I'll be having a transfusion of platelets to ensure that there isn't a repeat of the gore fest that followed the last one being fitted. My platelet count is currently 22.

*(JollyGreenGiantNibletExtractJuice)

T - day (part one). The end of the start.

Well I'm due to be getting the stem cell infusion today after lunch. Preparations are going off pretty much like a normal day, I started on infusions of Aciclovir, Ciclosporin and NAC at about 6.30am together with the pills, - anti sickies steroids and a new one which is like a soluble Vitamin C tablet.

Here's what all the fuss is about - 4.5 million stem cells

A Hickman Line would usually be used to deliver the cells, but there hasn't been time to whack another one in me so today it's going to be via the CVC, which has a narrower bore, but all of the four access tubes has been flushed after each infusion and the best ie clearest will be chosen today. Another nugget of info for the people in the queue, just before receiving the stem cells this arvo I will be receiving an injection of preservative to protect the incoming new cells. A side effect of this is that I will smell like sweet corn for a couple days as the stuff works its way though my system.

Two members of the post transplant team dropped by to see me yesterday - first was the physio who has given me a range of exercises to prevent me from vegging and the second was the post transplant coordinator who will be my contact for the myriad questions that are bound to come up short term and will be looking after me through to recovery and beyond. Again I haven't used names yet but will if they are OK with it - and I remember to ask.

I found out how to look at the blog stats a couple of days ago and had a bit of a shock. Considering that I thought the target audience would be family, friends and work buddies it knocked me flat on my arse to see that up until last night it has had 1250 page views since I started posting again a week ago, especially since my only other regular writing output is the Tesco shopping list. Know your audience though, so I thought I'd let you know that the two most viewed pages so far were both written when and about when I was a seething mass of steroids, chemo, coffee and insomnia. Recovery dictates that things will be a bit less pharmaceutical than that so I will be producing much less of the same and will have to accept that the figures have now peaked! More later - post transplant.

T - 1. Think I done had me some Roadkill Gumbo thar Jim-Bob.

This is getting a bit arse about face as I'm still writing about yesterday when soooo much has happened in the meantime. As I think I've already blathered somewhere along the line, one of the aspects of the drug therapy I'm doing is that it applies a pharmaceutical sledge hammer to the cheesy puffs of my memory, so if it's not in the blog quick, it's off under the sofa  where all the other self indulgent guff lives among the dust bunnies and brain farts. Is the writing a giveaway? - I am four hours into a six hour stint of the nasty but things are proving much more manageable.

I eventually managed to pass a chunk of the day  (17/02) off the infuser pump and had no more chemo until 8pm by which time I was feeling pretty recovered and chipper. It looked like the evening might also pass without chemo as the batch of BulSulfan that had been prepared  for me had exceeded its 48 or 72 hour usage window and had to be binned. Fortunately for me someone was able to smooth on down to the pharmacy and conjour up a new batch - huzzah.

I had a visit yesterday afternoon from a chap that I've chatting to on Facebook for some time and with whom I originally made contact via the MDS UK Patient Support Group on  same. I'll leave putting in his name and any other identifying details until he has seen this and confirmed that I'm not stomping on his personal privacy. It was lovely to put a face to a name and chat properly, we found a couple of very distinct and intriguing coincidences in our past lives that may have been contributing factors to MDS developing. Again watch this space I'll add more if given the nod.

What was most encouraging for me was to see the glow of health and the vitality that fills this guy given that he is now somewhere around  T+3 years. This is especially impressive when you realise how far he had to come - at one point before treatment he was trying to conduct a normal life with an Hb count of between 6 and 7 and eventually required no less than 3 transplants before one 'took'.

It's something that I find personally very inspiring  and  if ever I drift into a solo pity party, it's very easy to extract mysef from it simply by acknowledging that my little jaunt (sorry but I refuse to use the word journey - I think that people who use the word journey need the soles of their feet beating with tigers....journey my arse) has been an absolute piece of piss in comparison. Well that and listening to these;

Young Gods by Little Angels.
Hello World by The Tremeloes
Sylvia by Focus
Pata Pata by Miriam Makeba
Brandy by Looking Glass
Wonderboy by Tenacious D

A small and motley selection and the last nail in the coffin of my musical credibility - but you can't help which songs give you the goosies. I've also discovered I have a mile wide soft spot for seventies soft rock a la Looking Glass, Henry Gross, Raspberries and  The Fortunes - one hit wonders that make my scalp prickle with pleasure.

As to the title of this entry, well I said I was going to be honest about what people in the queue can expect and last night my bottom decided it needed to be front and centre for an hour or so. So I ended up sitting on the lav tryingto  play genius level sudoko's on my Blackberry. I'm sorry chaps and chapesses but unless you are Intestinal Ninjas you are going to get a runny botty and not the fun kind .

Get over your typical British reserve regarding poo and let the nursing staff know ASAP, you'll need to give two batches of samples from two separate BMs and once they test clear of  MMPRV (or whatever they're after) you'll get dioralyes and all that good stuff to slam down the sluice gates.

Hokay, a bit of house keeping and odds and sods of info; Nurse Mai confirmed that my blood levels are starting to show measurable drop off now which means that he chemo is deffo doing it's stuff and that I will need to wear a facemask if I leave this ward for Xrays or having the Hickman fitted. Sis Mel has succesfully donated the good stuff, she's sending me a couple of pics that I'll put up tmw.  - Last bag of nasty has been done, Aciclovir  is up next, just had my neck dressing changed, clean t-shirt and jim jams ready for what I hope will be T-day tomorrow early afternoon.

There is one last thing I would like to share with you before I quit for the night. Earlier today I suffered what has been the most serious setback to my jaunt so far and feel it only fair to give you fair warning lest it damage you as it did me. It's back, -  it's only shitting back! that  haemorragically annoying 'Starburst' advert. It has a stupid, beardy, gonk-faced kid dancer who gurns dementedly at himself whilst doing his 'funny' break dancing routine in the one way glass at his office, 'blissfully unaware' that on the other side of the glass is a meeting room and all the 'suits' are party to his little display. After he has finished his 'zany' little act he opens the door where, - to his fake surprise the suits all shake their heads at him in a mock reproving manner with half smiles and he does his best 'Aw shucks' with a shit eating grin.

At the least, -  this imbecile needs firing -  at the absolute least. What they should have done was to fall on him like a pack off blizzard starved timber wolves and tear his stupid gonk head off his silly bendy body before shredding it.

Or light sabres. My blood pressure was still high at obs two hours later - I really hate that ad.

T - 1. Megaflanges Ahoy!

8.30am bright and early Curly Wurly today already had my NAC, Cyclosporin and Aciclovir and waiting for the final dose of the nasty probably about 2pm.

So let's bring this self indulgent electronic arse-scratching right up to date.

Back to yesterday - cue wibbly screen and vibes chord -my Ma and Mel came up to Kings to have her (Mel's) blood enrichment tested prior to harvest today. For the past 3 or 4 days she has been jacking up huge doses of GCSF  (Granulocyte Colony Stimulating Factor) to prompt her system to overproduce er...I guess stem cells. The test was to establish the levels of stem cells present and whether any further last ditch changes were required to her meds prior to harvest today.

Centrifuge used to get stem cells - pic by Mel

I don't know what the normal unit of measurment is, so in the absence of common sense fact, let's call it a Megaflange (Mgf).  The lowest level at which a harvest would take place and be considered viable is where the donor presents with count of five million Mgf - the preferred level for a stem cell harvest would be from a donor presenting with a count of eleven million mgf.





My little Sis has clocked in at a phenomenal count of thirty two million Mgf.

I could not ask for a better start  - thank you so much Mel.

T -2. You're getting it in the Neck Sunshine.

6 am and on the baggies already - early start lots to do today - I've got do lots of sitting on my arse doing this. Feel loads better this morning had a good solid five or so hours kip which has given me a real boost.
My bloods were reviewed overnight and the doc has decided that I was depleted in Phosphates, Calcium, Awesome and Magnesium. So I'm having a baggie of each infused at the moment. The rest of the day will involve an element of catch up as I still need to have the following;

Busulfan infusion (2 hours)
Ciclosporin - anti rejection drug dunno how long this is infused for
Final hit up of the nasty (6 hours)
Aciclovir (4 hours)
NAC (2 hours)

Apparently I had a temperature spike yesterday whilst in surgery having the CVC fitted so as a precautionary measure doc has decided to add an antibiotic to the mix - I think it was Meropenem which may be a syringe direct through the CVC. There will be the the usual two or three little cupfuls of assorted pills that protect the bits of my body that we are intending to keep - ie the rest of it.

Mel is due in today for some tests to ensure that the GCSF she has been taking has had the intended effect of boosting the richness of her blood content sufficiently for harvest, this will determine whether the dose needs upping for the last set of jabs prior to the procedure.

The brilliant Nurse Mai who has been on shift and looking after me for the past two days has done some modification to the system of taps on the end of the CVC line which has made life a little bit easier. The system that was fitted to me had the same sort of structure as the the Hickman - 1 large line going into your body dividing into 3 (4 on a CVC) lines outside your body  with a one way valve on the end of each to which syringes and drips may be attached. The difference with my new piece of kit was that it was an ICU model and as such had a sizeable 3-way tap on the end of each tube which clattered around my neck and face. Nurse Mai very kindly got rid of these things so that I no longer look like the Dorian Grey version of Nick Beggs from Kajagoogoo.

T - 3. Ladies and Gentlemen presenting the Unravelling Wilburys

I think it's called an earworm -when you have a fragment of a song stuck playing on a loop in your head.

Nurse came in at 5.40am this morning to do Obs and hook me up to a bag of Aciclovir and it kind of sprang fully formed into my head as I opened my eyes;

'Reputations savable,
Situation changeable,
Wibble wobble
Cannon ball - handle me with care'

George Harrison's singing most of the time but Tom Petty has popped up on occasion, -  it seems that I don't know all the lyrics so we've whacked a bit of brain fluff in there to make it scan and the job's a good 'un.    It's decided to stay with me all day, so I thought what the fuck you can have it as well.

I fell asleep after that and woke again when the porter came in about  to wheel my bed down to surgery to get my line fixed. Only it turned out that because it's the weekend, the right chap/xray kit wasn't available to either replace or remove the Hickman Line, so that's been strapped tight to my chest until they can get the guy to shift it. I've had a new one fitted and it's of a different type, called a Central Venous Catheter it goes in the side of my neck and into a vein that drops straight into the heart. It's a short term measure and will be replaced by another Hickman in due course, of which I promise to take better care.

'Wibble wobble
Cannon ball - handle me with care'

As I've said to a couple of people I've been chatting with on Fb/instant messaging, last night and this morning were the toughest times so far. I really felt like death warmed up this morning and only started to improve after a nurse in the recovery room finagled a couple of paracetamol for me after surgery. I had to have an X-ray to verify that the CVC had been correctly inserted, then it was back up to Waddington Ward for a bag of NAC which I now know is N Acetyl Cysteine but I don't have the foggiest wot it do as the Google search is blocked by the Kings College Server, sounds promising though - eh?

I am now four hours and  twenty minutes into the second infusion of high dose nasty, one hour and forty minutes to go. Shiny upper lip, heavy, overfull head some slight feeling of disconnect and being out of phase.

'Situation changeable,
Wibble wobble...'

A doc swung by a while ago to take out the Hickman Line, it had been strapped tight to my chest, maybe in the hope that it could go back in - I dunno. It was mostly out and as she pulled the last inch or so emerged from the hole in the upper right quadrant of my chest and hallelujah it didn't set off another bleed. BTW platelets were up to a count of 70 this morning in spite of being nuked all week weird eh?

I thought the bloody removed Hickman looked a little like one of the foetus state face grabber aliens from 'Alien 2' with its' hunched body and little legs hanging down. I wanted to keep it, but it had to go for incineration. Oh another thing that chemo and especially The Nasty seems to specialise in is what were known as 'The Screaming Kidneys' back when me and my twenty-something year old friends were into weekend long drinking binges. Lower back pain in a band just around or above where we all perceive our kidneys to be - it passes though.

Apologies if this entry doesn't rock along as fast as those that have come before, but the reality is that when you people in the queue reach this point in your therapy you will feel like you've been shattered into little pieces and reassembled - just not quite properly. Some advice that I can pass on from very direct experience is to embrace sleep -  if you can sleep through the whole experience, your life will not be one experience less rich for abdicating this one.

I haven't fought sleep, but I haven't embraced it either and the combination of a diet rich in chemo and palliative care drugs (and shitloads of coffee) is certainly enough to piss all over anybody's fireworks after eight days. Enough whinging for now, the end of the start is in sight and compared to the way I felt when I first opened my eyes 16 hours ago I am more than golden now.

'Reputations savable,
Situation changeable,
Wibble wobble
Cannon ball- handle me with care'


I like the 'Wibble wobble Cannon ball' bit best, I just wish it would get the fuck out of my head as I'm needing earworm space for Joe Bonnamassa a bit later on tonight.

T - 4. The other, Other side of the Looking Glass...

Seeing as the majority of the previous entries were written whilst hooked up to the infuser by one and often two feed lines, I thought I'd try to capture what it feels like from a more considered POV  - offline (soz -  that Management Bullshit hasn't entirely left me) rather than trying to write from a viewpoint bang in the middle of the chemical gumbo pot.

It's 9pm now and in two hours I will be starting my last Busulfan infusion but in the meantime I am off the infuser for the first time today having started about 8.15am, I can feel my head starting to clear and I've been given a couple of paracetamol to soothe my smoking brain.

Today's main event was the 2nd infusion of  Thymoglobulin (the nasty) at 1.5.mg per kg of body weight - I currently weigh just under 80kgs. This drug is to supress or selectively kill my immune system so that the stem cells harvested from my sister will not be rejected when I get them on Monday. If the nasty didn't get it all today, well no biggie because there's always tomorrow and the day after that, but if my immune system hasn't been given a really really damn good kicking by close of business on Sunday I will have to take myself off to a corner to have a serious word with myself.

 As usual this was preceded by pills to prevent kidney or maybe gall stones, then anti-emetics, the Milk of magnesia stomach stuff (must get the name), another type of steroid tablets then a large syringe of methyl predisnolone liquid steroid and one of liquid antihistamine jacked straight into the Hickman line and up into the carotid artery.

The nasty doesn't look it, you kind of expect it come in one of those clear orange sleeves to protect it from sunlight (which would degrade all the evil) and for carbon dioxide type smoke to bubble off the top of it. But it's a  perfectly innocuous clear plastic Baxter saline baggie like all the others. In order to minimise the physiological impact it is delivered very slowly, so the normal clear infusion line is fitted to a reducer about midway along its' length which takes the bore of the tube right down. So whereas the longest time I've been hooked up before was four hours, the nasty is delivered into your system in very small continous flow over six hours, which makes it tricky to spot any incremental changes.

There was no clear point at which I went from thinking that I'd be OK to operate some heavy machinery today should it be called for, to whoah get that JCB away from me. I just kind of arrived at bug eyed and floaty without noticing it. At this point I'd pretty much discount Phenytoin from having been solely responsible for the sensation I've experienced during the previous infusions. From a lay (very) persons viewpoint I think it is the sheer quantity of the varied types of pharmaceuticals required to both protect and simultaneously destroy human tissue that causes the massive head rush that occurs during infusion. (duh)

As the next dose of nasty is only going to be 0.5 mg per kg stronger than today's jaunt I would say to anyone due for some of the same, don't worry at all -  it's a very heady intense experience rendered a bit dull by going on overlong. Be prepared to do a lot of staring at stuff, then rebooting only to start staring at something else. Music will relax you while this is going on, there was a point earlier this afternoon when I was having a good old bug eyed shout along to some decidedly non rocky stuff  - EBTG anyone ? and then Jeannette, I had a listen to our song and it made me cry just like it is now while I'm remembering crying while listening to our song.

Normal stupidity will be resumed as soon a pharmaceutically possible.

Breaking news Time 23.15 day T-3
========================
Didn't take long did it ?

One thing I can conditionally guarantee if you continue to read this blog is fairly frequent slapstick on my part.
Generally unintentional, but there you go - and here is what happened; nurse came to set up for 11pm infusion and was having a look at my Hickman Line which needed redressing as I had a shower before the nasty was started. On looking closer she said we cant do the infusion tonight because your line has started slipping out.

So when I had the shower it loosened the dressing to the point where the underside of the the line wasn't stuck to my skin and the weight of the tubes pulled the cleat around the top of the line free  when the infusion was unhitched after the nasty. So although all the nasty went in, the chemo can't continue until the Hickman is replaced which they think may be about 3am tmw - Friday.

A fairly common occurence apparently, but I still feel like a prize dong but all is not lost, because I'm having a consolation baggie of Aciclovir through a hand cannula at time of writing. YAY.

T - 4. Woooohhhh look at you Mr. Introspective Pants !

I'm having to resist the urge to return to previous blog entries to polish them so they sound less ranty, blokey, druggy or offensive. I thought I was writing this as a grounded account of what to expect and what stuff you might need for other members of the MDS or AA community as I could only find one other blog online  (tbh I'm a lazy git and didn't look too hard) but at some point I've clearly stopped writing primarily for other people and started writing for me and it could be important for me to refer back to these times when I come through the other side.

So it's probably better that it's true to what and how medication made me feel at the time rather than returning to further distort what was already a pretty distorted reality in the first place.

They wanted me to crap in this lovely cowboy hat. (Note CVC line and chemo) Pic by Mel

 Right - head out of belly button and onwards and upwards. Any offers on an unopened tin of Turd Poilsh?

T -5.. Well that wasn't so bad after aaarggghh

Haven't had the Thymoglobulin yet so here's a bit more info for people in the queue.

Lipsyl or equivalent from day one is must, some time over the past two days my lips have taken a turn for the worse I can't really open my mouth too wide for fear of splitting them and they are pretty sore today. Luckily Jeannette is coming to visit a bit later on and is bringing me some stuff.

If you have a blackout eye mask, the type they give you for long haul flights you may want to bring one in as there is emergency illumination like a little green Christmas light set into the ceiling fluorescent units of each room that gives it an alien glow when everything is turned off. You may be able to ignore and get to kip or it may keep you awake, in which case 'mask up suckah'.


Later/...

19.40pm 14/02/2013

Well quality control is now going to have to take a back seat (yeah like it's been reaaallll important so far) as I'm trying the balance the need for capturing my first experience of  Thymoglobulin (henceforth 'The Nasty') against the reality of typing illegible cobblers. That was tough  - ever looked at a word and it's just like you've never seen it before? lLLEGIBLE Illegible is that the right word?

 I'm now two hours in to my first infusion of the nasty, with four hours to go and so far have a slightly dry mouth, loss of appetite - had to send my lovely jacket spud back untouched -and the by now familiar head rush/buzz that has accompanied all previous infusions, except much stronger.

Listening to music at the moment is bloody great. I've got itunes banging out a playlist in the background and for any of you interested in making the whole procedure a bit more interactive I've reproduced it:

1. Battle of could Care Less - Ben Folds Five
2. Big Area -Then Jehrico
3. The Biggest Horizon - Clint Boon Experience
4. Black Hole Sun - Soundgarden
5. Dracula from Houston - Butthole Surfers
6. Hey Dude - Kula Shaker
7. I'm Free - Space Dragons
8. In the Meantime - Spacehog
9. The Man don't give a Fuck - Super Furry Animals
10. Not if you were the Last Junkie on Earth - The Dandy Warhols
11. One Way or Another - Blondie
12. Semi Charmed Life - Third Eye Blind
13. Shine - Collective Soul
14. Some kind of Bliss - Kylie Minogue
15. Story of a Girl - Nine Days
16. Where I find my Heaven - Gigolo Aunts
17. White Punks on Dope - The Tubes
18. 867-5309 - Tommy Tutone

If you want to make the experience REALLY interactive and  you are the type of person likely to have easy access to an album by the Butthole Surfers, then I'm gonna assume that you already have a healthy stock of your own pharmaceuticals, so bung one of each colour in your mouth -whack the playlist on and join me!
Kylie Minogue may look a bit out of place in there but it's actually a pretty good song written by James Dean Bradfield.

Things aren't looking too good on the short term memory front. I just took a comfort break and peed into the measuring jar prior to recording it on the little chart, rushed back into the room to <ahem> 'rock out' to the middle eight of  Blondie, finished that and then picked up my measuring jug and tipped it down the loo without noting the amount and then stood there trying to work out why I was holding the jug because I didn't need a piss and ........

20.30 hrs now and the side effects haven't materialised yet. This dose is 0.5mg per kg per day, tomorrow's is 1.5mg per kg per day (200% more) and on Saturday it'll be 2.0 mg per kg per day (300% more) and Sunday the same again. If you want a day of rest then that sounds like a pretty good way of going about it to me. I'm betting that if today doesn't kick my arse, then Friday or Saturday most certainly will. I'm going to put this up on the blog site and veg for a bit.

T - 6. The Night before The Nasty...

It's a bit after midnight - just into Thursday and I've got to marinade in this Busulfan  for about another hour and then a quick saline rinse off after that so I'd thought I'd make use of this time to update.

As I've just passed day five of the process it's getting a bit 'Same Spit, Different Dog' and I've settled into a pattern. Wake up at 7am get Obs. done (blood pressure, temperature, O2 saturation) then hooked up pretty much straight away onto the first chemo baggie of the day, followed by an infusion of either a flushing agent or more meds such as Aciclovir which are given prophylactically for the prevention of CMV (CytoMegaloVirus) and MMPRV (MightyMorphin' PowerRangersVirus).

While this is going on I usually have breakfast (2 toast, porridge with golf balls in and a strong, strong - I mean STRONG coffee) and later watch a bit of Jezza. I was chatting to one of the nurses the other day about my idea for Jezza Bingo based on exactly the same lines as Management Bullshit Bingo which we used to play in management meetings at a previous employer.

For those of you unfamiliar with MBB, you play by first assembling a master checklist of the  most commonly used transatlantic business buzzwords that get bandied around in these meetings. This master list is then used to compile bingo lists each of which features a slightly varied selection of the Management Bullshit Spiel  -a few of which less fondly remembered mind-rotters are displayed here;

• 'Stakeholder Engagement' or 'Stakeholder Interfacing'
• 'Synergy within the Business'
• 'Working across the Piece'
• 'Managing Upwards'
• 'Joined up' anything
• 'Integrated and Sustainable' anything
• 'Silo Mentality' or 'Silo Structure'
• Growth or change being described as 'Organic'
• 'Paradigm' bloody anything 'Shift'/'Growth'/'Management model'

This is by no means a full list which was (and lord knows maybe even still is) subject to organic growth as the ever expanding lexicon of the Management Consultant continues its' march up its' own arse.

Hands up if you know what a paradigm even is -  or knew that the 'g' is silent. How did I manage to get past age 45 and still live a relatively happy life without knowing this? Well a) because I didn't go to college and b) because it's Management Bullshit. Without Management Bullshit you'd just be 6 smartly dressed people sitting in uncomfortable silence around a table whilst fiddling with your coffee cups.

Anyway back to the bingo - once kitted out with your list the idea was then to listen closely to your peers' and managers' spiel during the meeting and to mark off any of the offending bullshit as it was used.

There was no standing up and shouting 'Bingo' if you filled your card, you'd just look smugly at your co-conspirators to let them know that you'd had your fill of management bullshit for the day - it wasn't really very subversive working at a local authority.

As mentioned though it did have the perverse effect of making me pay attention in  meetings rather than drawing endless intricate acid casualty doodles in my Red and Black. Looking back now , not very subversive at all...

Back to Jezza Bingo, -  the idea here would be to find common paradigms - sorry I mean themes, whether they be speech, clothing, hairstyle whatever and compile them into the master list.
To get the ball rolling, I've had a bash at this myself ;

• Neck Tattoos
• use of the phrase 'at the end of the day Jeremy'
• use of the phrase 'that's why I'm here today Jeremy'
• Lotto trainers with Velcro fasteners (nb. laces not applicable in this category)
• use of the phrase 'I'm not an alcoholic - I don't drink every day'
• use of the phrase 'I used to smoke marajuana'
• babies called Mackenzie (presumably named for the mum's favourite tracksuit)
• any reference to Dagenham, Hastings or Wigan. (have fun with these -  maybe introduce a wild card or change locations from week to week)
• Knuckle tattoos  (nb.only LOVE, HATE or ACAB applicable in this category)
• use of the phrase  'after the break we'll get the result of those all important DNA (or lie detector) tests'
• Trakky bottoms tucked in to socks
• use of the phrase - 'I turned round and said to her..' or 'how come you turned round to me and said..'. Why don't these people just face each other when they are talking?

This list is absolutely not definitive or finalised and I would welcome contributions from anybody who feels that they have identified a decent item of Jezza Bullshit. It may be Bullshit from the man himself or Bullshit from or on a punter, but please join me and let's see if we can work together to make this master list genuinely offensive -er I mean definitive.

 I think at this point I should add that this list will only be compiled with specific reference to the UK version of Jezza. The US version of Jezza is subject to a separate category list currently defined as 'American Self  Help Bullshit' and is available in 12 volumes.

 Now the nurse that I was chatting to suggested that this could have the makings of a great drinking game - ie every time you hear or see something from the master list appearing in Jezza's show (which airs at 9.25am in the UK), you have to take a belt of something alcoholic- now I can very definitely see the appeal of this, but then again seeing as I've been in recovery since 2003, I may not be best placed to give advice in this area.

OK so I've had some sleep and we are now well and truly into Thursday - it's about 7.45am and I'm having a baggie of NAC (NAQ?) and another of Aciclovir. I will now present you with proof positive that the internet (or maybe just Google) is a sick bastard with a sicky, sick, sick sense of humour.

Go ahead and Google Aciclovir - see the first search result? I rest my case. But let me also just say that is sure as sausages not what I'm frigging taking it for.

T - 6. Stuff you should know if you're in the Queue...

Well I've been here for nearly five days so it stands to reason that I'm now a complete expert at blood and chemo and stuff so I thought I'd give you the benefit of my vast experience.

If you're in the queue for a BMT and you're reading this for a heads up, well here we go - I would be totally shafted without a laptop, although I'm only five days in, I've come to rely on it as my window to the world, it makes me feel far more in touch than a mobile or the telly. It's used for games, communication, news gathering the lot. You're going to be here a while so load up on distractions.

So far the chemo hasn't been too onerous. For every bag of cytotoxin infusion I've had, there have probably been two bags of infusion and a fistful of pills prescribed to counteract the side effects  - or at least minimise them. I've also got Cordosyl type mouthwash and anti thrush throat drops  - and finally there's this stuff a bit like Milk of Magnesia (but sweet) which is to protect the lining of the stomach and has to be taken with food.

 I'm just about halfway through the chemo course now, at the start of day five and the worst that has happened to me thus far is a bit of intestinal discomfort, a feeling of bloatyness and the need to pee about every 15 to 20 minutes - you have to record how much liquid you take in and expel, which means peeing into a measuring jug and recording it on a little chart. So I say damn well done to the team that have formulated this regime  because I reckon you could fill the iv bags with a Friday Night Biryani and get side effects no more grievous - and it might even do a fair job of finishing off your bone marrow. The message here is so far so good.

While we're on the subject of curries I suppose I should warn you that you will most certainly get the trots from the chemo - I was OK until about halfway through day four, I might even have been at the opposite end of the poo spectrum at the start of day four but at this moment in time I can tell you that I'm more than happy with the fact that my room is of a size such that I'm never more than eight feet away from Messrs Armitage and Shanks. I've been asked to provide a couple of samples for testing, so I'm saving that for this afternoon when there's a bit of a lull in the quality of daytime TV and I might need a bit of excitement...

Having said all that, I'm probably about 2-3lbs heavier than when I came in, which can only be due to the very sedentary lifestyle. I mean sitting on your arse all day getting free grub and having drugs pumped into you non-stop - it's a bit like the 1969 Rolling Stones US tour.

I keep remembering little things just when I think this entry is done with,  BUT you will almost certainly want to bring a Chapstick or Lipsyl as the air conditioners and filters leave the air very dry and you will find that your lips will start to crack around the mouthline. Wet wipes are another useful addition - just for freshening up during the course of the day and as I discovered yesterday, an air freshener of some sort for the room.

With the chemo and the bloaty feeling comes fartyness. I must have been left to myself for about an hour or so - all hooked up to the infusion delivery and parping away happily, when one of the poor nurses opened the door to check on me and I swear I saw her head rock backwards as she broke the seal on the door. It's funny now, but I was just soooo embarrassed yesterday. So deffo get an air freshner, I'm getting one of those glass bottles with the sticks sticking out jobbies.

T - 7. Sod it! My Hands have gone back to Normal...

Well that made a pleasant change from boring old sleep...

Sit up until the early hours with your brain doing laps around your skull looking for the emergency exit why doncha? All I needed was a mullet and some Nick Kershaw and it'd 1985 all over again.

I think I eventually dozed off at about 3.30am and was roused by Grace around 7am for Obs and to be hooked up to my first bag of chemo of the day, which was about 30 minutes and then to 500ml of lovely NAQ (or maybe NAC) delivered over 4 hours - it's given to prevent kidney damage and to flush them out or something.

Another nurse - Katie came in to see me and advised that I'd be starting on the Busulfan this afternoon and I very casually asked if I would be needing Phenytoin again 'Yes' she replied (YAY!) 'But it'll be a much smaller dose than yesterday, because we had to give you a high dosage at the start to load your system first' (AW - BOLLOCKS).

I also had a very brief audience with a Consultant who popped in to have a chat and to see how I was doing. He talked very quickly but I think his name was Robert something. I guess he'll be back when things get a bit more shitty for me and more interesting for him.

Seems it was just as well that I wrote the previous buzz blog entry when I did, as I just got off the phone with my brother and he was laughing about last night and asking if I remembered the 30 minute text chat we had at about 10.30pm....I have no recollection.

Right so I've just been hooked up to the first batch of Busulfan and it's gonna be a couple of hours going in, meantime I just found another reason apart from kittens to hate the bloody internet... you can look up the possible side effects of drugs way too easily - I'd have rather been left in the dark but I'll share with you anyway.Busulfan may lead to light headedness (check), hair loss (fair enough - that'll be a bit further down the line), diarrhea and constipation (?! I'll let you know how that one pans out - pans geddit?) and then my own personal fave - rectal bleeding.

Get this f***ing thing out of me!

Nah - in reality the lightheadedness feels quite nice so I'm just going to enjoy the ride.

T - 8. Much later that same day...

I thought I had better get this down while I remember, because it'll probably be wiped from my mind when I wake up tomorrow. So anyway earlier on this evening Katie, one of the nurses came in holding the usual plastic cup with a load of pills in it and she started telling me what they were called and used for, as I ate them - all sizes and colours - to stop me puking, to stop me getting fungal, viral and bacterial infections - you get the general idea. Then I heard a name I recognised from way back- PHENYTOIN.

Me: 'I used to take this for my petit mal epilepsy when I was kid, it's an anti-colvulsant or some such isn't it?'
Her: 'Yes that's right.'
Me: 'Well I won't be needing those, I grew out of having those fits at 19 and there's been no repeat and I haven't needed meds since 1981'

I thought at this point that they had retrieved my medical records dating back to the 1970's and had  picked up the need for the prescription from there. (Yeah I know it's stupid- well NOW I know)

Her: 'You will most definitely be needing these.'
Me: 'Why's that then?'
Her: 'Well let me tell you a bit about the next round of chemo starting tomorrow...'

It transpires that the next course of this nine day feast is Busulphan administered i/v, which can give you a serious case of the billy wobblers ie fits, convulsions and swallahdetung if you're NOT full of Phenytoin and she was providing me with a pre-dose to get my system ready.

Then  fast forward to about 3 hours ago, when I was playing Words With Friends with a bunch of chums on Facebook when all of a sudden the room got echoey - as I was using the laptop keyboard it emitted a very satisfying echo. I also noticed what a lovely bright silvery colour the keyboard keys were and for that matter how everything else in the room suddenly seemed a bit perkier and pleasing to the eye.

Now I've been sober for close to 10 years and straight for nearly as long, so it was only after I'd been marveling at the back of my hand for a bit that the penny dropped. I floated across to my little bathroom and had a look in the mirror. Yep - there's your problem - the drug fairy had replaced my pupils with manhole covers. My pupils were so frigging big that I could almost see right through to the back of my own head.

It's a wild guess that it's the Phenytoin giving me this lovely gentle buzz and to be honest I've ingested so many pills over the past few days it could be any or all of them. However, I'm enjoying the feeling at the moment, it's not a huge all consuming buzz, more the kind that makes interesting things happen at the periphery of your vision and makes running your tongue over your teeth so satisfying - just enough so that you can kinda feel that you're through the looking glass rather than full on rocked up at the Tea Party.

So I'm good with this, because it gives me options - if I should come up against a particularly grim session of daytime TV in the paper first thing I can either go with it and enjoy the Phenny or palm the caps and wait for the wobbles to take me. After all everyone likes abit of a dancey-dance now and then don't they?

T - 8. Early doors, early doors

Right so I've been admitted to Kings College Hospital and things are starting to get real. I'm on day three of a nine day chemo regime which will get rid of my old crappy bone marrow, making way for  an i/v stem cell transfusion a week today - courtesy of my little sis who is donating. Although it's called a bone marrow transplant, it isn't really one - the stem cells will grow my new bone marrow if all goes as it should.

For people who are interested in that kind of thing here's the plan.

Day 1:   30mg Fludarabine iv
Day 2:   ditto
Day 3:   ditto
Day 4:   3.2 mg/kg Busulfan
             Fludarabine as above
              A loading dose(?) of Phenytoin
Day 5:   ditto
Day 6:  Busulfan as above
            0.5 mg/kg/day Thymoglobulin
Day 7:   Busulfan as above
             1.5 mg/kg/day Thymoglobulin
Day 8:   2 mg/kg/day Thymoglobulin
Day 9:   2 mg/kg/day Thymoglobulin
             1.5mg/kg Ciclosporin

So not a lot of this means a huge amount to me, but I've been told that the fun really stops once I start on the Thymoglobulin.  As well as the above stuff I'm taking a variety of tablets every day - antisickness, anti fungals, antibiotics as well as using a special mouthwash and drops for my throat apparently to prevent thrush -  I dunno what they think I've been up to! Only a very small amount of what I'm getting is the actual chemo, most of it is to prevent/ protect from side effects and infection.

I have a barrage of tests going on each day, blood tests, swabs, X-rays and blood pressure and temperature taken every couple of hours. Yesterday I even had some kind of test where I had to stick a king sized Q-tip up my jacksie. On reflection I think this might have been a stupidity test...