I had a call from the hospital yesterday afternoon. The ciclosporin level in my blood is still too high but it is getting better at least. It was 325 and the range they are looking for 250 - 300 so I have now reduced my dose to 50mg and 25mg down from 50mg and 50mg. Hopefully this will settle it to the right range.

The fun will come when I stop taking the anti-fungal medication that is currently pushing the level up. This will need to be managed so that I don't swing too much the other way and give my donor immune system the chance to cause some more GVHD.

There is a certain camaraderie that builds up amongst us haematology patients particularly with those whom you have spent time in hospital and then see from time to time at the clinic or the day unit.

Yesterday I caught up with a guy who I see every couple of weeks and is about eight weeks ahead of me in the process, though as he had stem cells from his brother rather than an unrelated donor his recovery has been somewhat quicker and he is on a low dose of ciclosporin and back in at work full time.

He had some sad news to tell me yesterday. One of the other patients we both new, a young guy in his twenties had died. He also told me another guy we both know is struggling with set backs.

It was sobering news and reminds me both to "count my blessings" and what is at stake here.

I battled through the unusually heavy traffic to get to the transplant clinic this morning and just made it on time. Not that it matters that much as it's always a good half an hour after the allotted time that I get to see the doctor.

Over the last few days I've been getting the odd itch round the neck and face and on Monday evening I noticed a feint rash round my neck and shoulders so I figured my GVHD was making a bit of a comeback as I have been tapering off the steroids. The doctor confirmed that today and so I am going to stay on the 10mg dose of prednisilone steroids rather than finishing them on Thursday. I've also been given some Betnovate steroid cream to apply to my neck and shoulders twice a day for the next week. It goes on well and is easily absorbed but it does have a quite strong, good old fashioned medical embrocation  smell that lingers a while.

The GVHD is nowhere near as bad as it was around Christmas so hopefully it will respond well to this little extra steroidal kick. As the doc said this is not an exact science and has to be done on an observational/clinical basis.

The other thing I've had over the last few days is a recurrence of night sweats that I last had almost a year ago and were the initial trigger for starting my treatment programme that  begin in March. Again they are not severe where the whole bed is drenched ( I have had a couple of those in the past ) more just waking to a clammy, sweaty feeling. The cause of these at the moment is unclear. I don't have a temperature and generally feel well. The doc listened to my chest and pronounced it clear as a bell. 

If there is some underlying infection causing the night sweats this will be picked up by the infection markers in my blood. Should these turn out to be high I'll have to have some blood cultures and other tests done to see if they can pin down what it is.

Tomorrow afternoon's now seemingly regular call, if it comes, might be interesting, in that apocrophyl Chinese proverb sense.

Overall it's obviously a disappointment to have to stay on the steroids longer and have GVHD still lingering but hopefully this is a minor set back and the cream will sort it out.

I had a pleasant weekend and even did some work. There was an important migration of users onto a new system planned for Saturday so I said I would make myself available if there were problems. As it happens I spent just over an hour working on issue on Saturday afternoon. I managed to resolve the issue just as my friend Andy popped round for a visit so the timing was excellent.

I am very cognisant of the effects of stress on immune system function and the risks of overdoing it, so at the moment I won't be making a habit of working out of hours,. However in this case I would probably have been stressing more about what was going on had I not made myself available so I think it was the best thing to do.

After bemoaning the fact I'm still on the clean diet the other day and take aways are therefore forbidden I took advantage of an offer on the Sainsbury's website and with this week's shop came a Chinese "banquet" for £5 . It consisted of spring rolls, peking duck with pancakes and chicken chow mein and it was surprisingly tasty, the duck in particular was good. I couldn't have the spring onions  that came with it and of course I didn't have the cucumber ( which as we all know is a foul and loathsome vegetable from Beelzebub's allotment ) but the pancakes and hoisin sauce gave it the authentic take away experience.

The other thing I have done today is start using my Twitter account again. "What is Twitter?" I hear you say? Well it is described as a micro-blogging site. You can post updates, or tweets, of 140 characters maximum about your current status, what you are doing, anything you like and people who are registered to follow your updates can read them via the web and various applications. (You used to be able to get text messages to your mobile phone as well but this was withdrawn for cost reasons in the UK but you can still update your twitter status from your mobile.  ) 

What is it good for? That's a very good question and not one I am entirely sure I can answer. I suppose one answer is that it is a handy way to update a bunch of your friends in one go about what you are doing. Gareth has used it to provide travel updates in the past when he used to get the train up from Portsmouth. Another novel use I saw was during the Olympic Flag protests in San Francisco when various people were updating with tweets about where the flag was being taken as it was diverted round the city so the protesters could re-organise and regroup.

So if you want to follow my tweets take a look at http://twitter.com/simonstanford 

 

.........but this time it is in my ciclosporin doses not my fingers.

I've just had the Thursday call from the hospital. My ciclosporin level is still around 400 ( down from 495 last week ) and it should be in the 200 - 300 range so I have to miss two doses tomorrow and then cut down from 75mg morning and evening to 50mg morning and evening.

My level is 400 whats? Well according to this site here it is is ng/Ml  which is nanograms per millilitre or billionths of a gram per millilitre .

It was an early start for me today to get to the transplant clinic for 08:30, after being stabbed three times to get blood I went in to see my consultant.

It was a pretty straight forward review of how things have been for the last week on the reducing steroid dose and as I have had no recurrence of the GVHD the plan is to continue reducing until in about 8 days time I will be off the steroids completely.

Things will then need to be left to settle so I will not start tapering off my ciclosporin anti-rejection drug until March. This is a bit later than I was hoping for but I understand the reasons with having had some GVHD now. This means I won't be looking at getting re-introduced back into society until late March, early April and even then it will be in stages.

I mentioned my current status and the regime I am following, namely eating a clean diet, no going to any public places, avoiding anyone with infection, only going to a couple of other people's houses and seeing a few people. I was sort of hoping that my consultant might give me a little lee way and say "oh you can relax a bit on the clean diet" for example but she just confirmed that I was doing the right things even it was a bit lonely. Ah well you have to try these things.

My counts are doing quite well, my haemoglobin was 11.7 so holding up well. Neutrophils were 1.7 and the bottom of the normal range is only 2.0 

Another interesting piece of information I found out was my Chimerism level. This is the measure of how much of my immune system is from the donor and how much is my original ( faulty ) one. My test back in November showed I was 100% new donor which is a good sign. Now the test is not totally precise and will be repeated at a later date as you can sometimes get some of your original immune system coming back but it is not common and usually only a very small percentage.

I have to confess I'm a little disappointed about the delay in my ciclosporin tapering as I am starting to get a little frustrated with being in purdah. It's things like going to the cinema, concerts and eating out that I miss. There are some good films coming out over the next few weeks and months and I won't be able to go and see them in the cinema. I also miss visiting friends, though after my steroids are over and things have settled a bit  I am hoping to invite a couple other friends round for a drink one evening. 

As for the cinema I'm making a list of the films I'm missing and will get them on DVD at some point. Not quite the same as seeing them on the big screen ( complete with Pearl and Dean advertising ) but it's something.

As for the title of this post, well I'm not sure it is true as blow me didn't I cut my thumb yesterday at the fleshy tip again like I did my index finger on Sunday . I should never have bought that knife sharpener though supposedly you are more likely to cut yourself with a blunted knife than a sharp one. ( The theory being you need to put more force behind the blunted one and more likely to slip.)

I managed to cut the tip of the index finger of my left hand with the bread knife yesterday. After my initial exclamation of "Ooh I say, that stings a bit!" My next thought was "possible source of infection!" something I wouldn't have given much thought to 18 months ago.

It wasn't a very deep cut but it was right on the fleshy tip so bled a fair bit and was in a place that would open up again easily. When your immune system is low your first line of defence is the physical barrier of  your skin. So I was a brave little soldier and rinsed it with a some alcohol gel, more "Ooh I say", and then stuck a plaster on it.

I tried taking the plaster off this morning but that was a bit premature and it was back on by lunchtime as the cut had opened opened up  again, probably due to using a keyboard all morning. The current status is I've taken the plaster off and the wound is holding up ok.

Now the foregoing might seem more information that you could possibly be interested in about one little cut but I guess it just goes to show the all pervading influence in my thought processes during my recovery from an immuno-suppressed state.

I'd quite forgotten that the 15th of the month is pay day and so it was a very pleasant surprise to get my pay slip through the post on Friday and see it contained nearly a full month's money. It being a bit short due to my not starting back to work until the 5th of the month.

It's nice to be back earning again and I've started to look at things that need money spending on round the flat. The bathroom is in dire need of redecoration and a new ceiling so quotes are in hand for that. Also the soffits and guttering on one side of the house need attention.

In order to get the soffits done I needed to check the lease to see if there was anything special I needed to do and whether the landlord was in anyway responsible so I spent an at times baffling half hour looking through the lease and the convenants in it. This is slightly complicated by the original 1962 lease having been extended in 2006 so there are two sets of documents to look through.

My goodness the legalise is virtually impenetrable at times but the bottom line is that I am responsible for the upkeep of the exterior so it's down to me to  get the soffits fixed. Fair enough at least I know I can proceed to get quotes.

To give you a flavour of the lease, below is a sample paragraph. See if you can work out what it is trying to say....

This Lease is to be construed and take effect as if those terms, covenants, provisos and conditions were except as above repeated in this Lease in full with such modifications only as are necessary to make them applicable to this demise and the parties to this Lease except that the covenants given by the Landlord and the Tenant are to be construed as if they had been given at the actual date of this Lease (as opposed to the commencement date of the Term)

Bascially as the lease was extended in 2006 I think it's trying to say the terms from the original 1962 lease are included in this lease and the covenants etc. start from 1962 and not the end of that original lease in 2061. Though who can really say? Well an expensive solicitor could probably say.

The phone rang at 16:45 and I knew it would be the hospital. It was the doctor from the Bone Marrow Transplant unit. My ciclosporin levels were about twice what they want them to be which is caused by the itraconazole anti-fungal medicine I'm taking. 

My kidneys have coped well with this extra level and I put that down to the fact I've stuck rigidly to the three litres of water a day edict I was given when I came out of hospital. That and the fact I've not drunk alcohol for eight years. Well I think I average about four units per year.

So now I have to halve my dose of ciclosporin down to 75mg morning and evening.

Things are going to be up in the air for a while with reducing steroids, fluctuating ciclosporin levels, gvhd and blood counts all interacting. Hence going to the clinic every week again after previously dropping to every two weeks.

I went to the transplant clinic this morning and saw my original consultant who has now returned from maternity leave. We had a little joke about the fact I didn't look any different from when she last saw me ( back in June ) and we discussed how the transplant has been going.

The aim now is to start reducing my steroid dose in more gradual steps, so from the current 50mg I'll do 5 days on 40mg, then 5 on 20mg, then 5 on 10mg. So in theory in a fortnight I could be off the steroids all together. However as the consultant explained this is not an exact science and it has to be done by clinical observation. I.e. if the GVHD starts to come back then the tapering of the steroids will need to stop and the dose may even need to go back up.

As this was the first catch up meeting back with my consultant I didn't go into the details about my re-introduction into society. ( Makes me think of Born Free and Elsa the lion now). I will mention it next week just to start getting an outline.

After clinic I came home and logged on to work but I also managed another little stroll this lunchtime. My haemoglobin was 11.7 this morning which is pretty good hence being able to go for walks without pain and breathlessness.

I've continued working from home this week and getting back into some detailed work configuring a new server.

At lunch I decided a breath of fresh air would be good and the weather didn't look too bad outside so I took a stroll along Moor Lane and then back through the cemetery. The route was pretty level with only slight upward slopes here and there and I was out for about thirty minutes. I felt fine doing this, no tiredness at all so I'd say that means my haemoglobin is holding up pretty well. It was a very pleasant little stroll.

Tomorrow is the transplant clinic and I hope to talk to the doc about working out a plan to start re-integrating myself fully into society. I was initially aiming for around March for this but this little GVHD episode may have set that back a bit. 

I'm not expecting a concrete timetable more a sequence of events and target like having counts at a certain level, down to a certain dose of ciclosporin etc.

I had quite a busy and productive weekend in my terms. Spent a fair amount of time messing about with my Internet wireless router to try and remove the black spot that exists in the study and makes it difficult to get a good signal in there on some devices (still work to be done there) . Also did a few other geeky things with Gareth's eee PC laptot.

Sunday I went to Mom and Dad's for lunch and afterwards got Dad to give me a haircut as it needed a bit of a trim. This is the first normal haircut I have had for several months. The previous two haircuts in about June and September were just to shave off the last sorry remnants after most of my hair had already fallen out. I had my usual No. 2 grade all over. My hair is definitely different to how it was, apart from the bits of grey it's darker and much finer or softer than it used to be.

As well as the foregoing I also managed to fit in getting all the washing and ironing done.

I wonder why so many barbers used to have boards outside that said "Haircut, Sir!" like an order rather than a polite question? Some hark back to the days of national service perhaps or maybe some old advertising campaign.

If the phone rings late on a Thursday afternoon and the caller ID shows "unavailable" then it is a reasonable bet that it will be the hospital ringing to adjust my medication. So it proved to be yesterday.

I had a call from one of the Bone Marrow Transplant co-ordinators saying that my ciclosporin levels were a bit high and I needed to skip two doses completely and then resume on a reduced dose of 150mg morning and evening, down from 150 in the morning and 175 in the evening. This was predicted by the doc last week as the itriconazole anti-fungal medication I am taking as part of the steroid therapy causes changes in the ciclosporin levels.

I didn't sleep very well last night. I went to bed around 22:30 and though I drifted off at some point after for a while, I remember being awake at midnight. I had a lot of thoughts running through my head but not in the sense of them mithering me as I very occasionally get when I have a lot on my mind. This was much more like my mind was just active and wanted to play like some excited puppy.

I drifted off again and next woke at 02:00 and again lay there thinking thoughts on all ranges of topics. The next time I woke was 04:00 and I didn't feel I would be getting off to sleep again Indeed at 06:00 I decided it was daft just lying there so I got up, caught the news headlines on Radio 4 and then had a shower. Now it's 07:00 and I'm writing this blog.

This sleep disruption is probably due to the effect of the steroids as they can often affect mental states. I have to say it is not at all an unpleasant feeling , my thought processes were quite engaging once I just relaxed and stopped thinking I should be concentrating on getting to sleep.

Whether I will view this phenomenon quite so kindly by the mid-afternoon remains to be seen.

Haiku Very Much

I've been giving thought to creative writing matters of late and in the early hours of this morning , almost unbidden, the fragments of a haiku poem came into my stream of consciousness.

A haiku is a stylised form of poetry from Japan consisting of just 17 syllables usually split on three lines of five, seven and five syllables respectively. There is a nice explanation of all things "haiku" at the delightfully titled site "In the moonlight a worm".

My own little effort, by the criteria given on that site  and my own judgement is not very good at all, not least because there is no juxtaposition of imagery. The subject, though apposite to my situation is also rather prosaic. However here it is:-

Antibiotics,

flowing through my body with

caring chemistry.

Yes folks this blog has now started inflicting my poems on you. Just blame the drugs.

I braved the ice and snow to get to the transplant clinic today and it went well. It got off to a good start when the phlebotomist was able to get blood samples out of me on the first attempt ( it took five goes last time ).

I saw my consultant and he was very pleased with the reduced GVHD on my head and neck, the skin is only a little dry and the rash has all but gone. The plan now is to reduce the steroid dose further and see if the GVHD will stay away. So after tomorrow I will reduce the dose from 75mg to 50mg. Blood pressure was pretty normal so hopefully we can get the steroid dose down before it starts to affect that too adversely.

The stomach upsets and diarrhoea are a bit of a mystery still. The steroids can cause acid indigestion which I had a lot of to start with and I can take some ranitidine to alleviate that, but steroids don't usually cause diarrhoea and it responded too quickly ( and well ) to the immodium to be likely to be an extension of the GVHD. At the moment it is down as a JOOTT ( Just One Of Those Things ) and we shall see how it goes.

My stomach has been much better today and I was able to have a cheese sandwich for lunch without any side effects.

After the clinic I logged back on to work and have been getting more and more into the swing of things. It does leave me a bit tired at the end of the day partly due to rising earlier than I have been and partly from the mental effort of concentrating for long periods. ( Yes I know I'm not digging ditches for a living but pressing these keys can be hard graft sometimes ). 

Of an evening I very much veg out at the moment and am looking forward to a nice lie in on the weekend. Overtime I guess I will adjust to being more active as I get into the routine.

So for the time being general non-medical style posts might be in short supply ( is that a breath of relief I hear? ) unless of course the muse particularly strikes me.

One thing I ought to do is a bit of a review of the past year perhaps.

Well after dinner last night I got really quite bad stomach ache with a lot of trapped wind and acid indigestion. Some Remagel tablets sorted the acid but the trapped wind was a real problem and gave me a disturbed night sitting up in bed at times with a hot water bottle on my belly. I was feeling quite sorry for myself at times.

The problem was confounded by having to be careful about releasing said wind when the opportunity arose because, due to the problems the day before, I couldn't be sure I wouldn't get more  than I bargained for, so to speak. So I was up and down to the loo a few times in the night as well though I didn't actually have any more diarrhoea.

I still managed to get up at 07:00 and did a full day's work including some actual productive stuff with support calls.

I've taken it very easy with the food today, just four cornish wafer water biscuit things so far and plenty of water. My stomach has settled down a lot and I'm hoping to manage a little soup for my dinner.

I think yesterday was the aftermath of the immodium from the day before causing me the opposite problem to the diarrhoea and slowing my digestive transit too much.

I'm at the transplant clinic in the morning so I will mention all this to the doctor and see where we go from there.

Here's hoping for a calm night without any force 9 gales.

Rated Potentially Gruesome for references to runny bottoms.

Yesterday didn't get off to a great start with having to go to the loo ( or open my bowels as the medicos say ) four times before midday and although nowhere near as bad diarrhoea as when I was in hospital it was obviously not right. 

I took a couple of loperamide ( Immodium ) and this cleared everything up quite quickly but that is most likely just dealing with the symptoms and not the cause. That could be one of a number of things. It could be a stomach bug of some description, a reaction to the steroids and/or anti-fungal meds or it could be the Graft Versus Host Disease (GVHD) moving on to another area, the gut. 

I don't think it is a stomach bug as it didn't have that sort of intensity to it,  I didn't have a temperature and could eat fairly normally. In theory the steroids should be combating the GVHD wherever it is, skin, gut etc.  so maybe it is a reaction to the new meds.

I took another couple of doses Immodium at the prescribed intervals throughout the day to ensure everything was settled down and I had a reasonable night. Today I've had one normal bowel movement but have had quite bad acid indigestion and trapped wind after every time I've had something to eat. Some antacid chews have helped alleviate this and it might just be I over did it with the Immodium. It's always a balancing act.

Hopefully things will start to settle down tomorrow. I'm due at the transplant clinic on Wednesday so I'm hoping I won't need to get anymore medical advice or intervention before then. As long as things don't get any worse then I feel fine about waiting until Wednesday.

Back to Work

Despite my tummy troubles I logged on to work at just before 08:00 for my first day working from home since the beginning of September. Getting up at 07:00 was quite a task as I've been used to getting up between 08:00 and 08:30.

I've spent the day doing administration stuff and connecting in to the new email system we have been migrated to and generally finding my feet. 

Waiting for me in my inbox were 42,144 emails. I was able to weed lots of these out as automated messages about events and support calls long since resolved and I actually only had 223 messages from real humans.

I've been able to use my new Mac Mini to do all my work today once I had cleared down the emails using my laptop PC from work. I'd much rather be able to use Mini for work than the laptop as it is easy to just walk in to the study and it's all set up I just have to logon plus I can have iTunes play me music all day to keep me company and generally use a better operating system.

I felt a bit tired when I had a break at lunch and could easily have taken a nap but I was able to carry on. 

I think it will be an early night tonight.

The Christmas decorations have come down, both at home and on this blog and I'm trying out a new template.  I think it looks very crisp and clean and hopefully makes the blog easier to read and print out.

I might fiddle with the fonts a bit and try one of serif fonts as they generally help guide the reader's eye along lines when there are large blocks of text.  

It also now has tabs along the top for pages you might want to refer to whilst reading.

A very happy 2009 and to you all. I saw in the new year at my friend Andy's house and it was a very pleasant evening.

Earlier in the day yesterday I went to the Transplant Clinic and deliberately didn't put any E45 moisturiser on so the doc could see my flakiness in all its glory. He confirmed that, as suspected, I have the symptoms of Graft Versus Host Disease (GVHD) with a reddening rash on my chest and neck and dry itchy skin on my face. This means the white cells produced by my donor stem cells are attacking my skin as it sees it as a foreign body. It's very common for this to happen with unrelated donor transplants and can usually be controlled quite easily with some steroid cream or tablets.

The doc prescribed me 100mg of Prednisolone tablets dropping to 75mg after three days and put me back to a weekly clinic appointment until the GVHD has settled down. Steroids are wonder drugs and already my skin is less itchy. They do have some downsides though and in high doses can cause high appetite ( could be tricky for a New Year diet ) affect blood sugar and blood pressure , cause euphoria and difficulties sleeping. When I was on Dexamethasone steroids earlier in the year I did get some euphoria and appetite issues but nothing too difficult to handle so maybe the prednisolone won't be so bad either.

The other thing steroids do ( and they reason they are used to fight GVHD ) is that they further suppress the immune system. So I've got some anti-fungal liquid called itriconazole to take as a precaution and will have to be extra careful about mixing with people etc.

Although GVHD is very common and virtually everyone who has  an unrelated donor transplant gets it at sometime, this is a bit of a setback and may delay the process of weaning me off the ciclosporin anti-rejection drugs which will in turn delay my immune system recovering enough that I can get back into normal circulation but hopefully only by a week or two.