Peter’s Hospital Diary

It really is a soggy day here in Hampshire this morning, chucking it down with rain. I have been continuing the final stages of the computer update, with some new applications . Firstly apologies to all who tried to look at the blog last night – I had been adding a new music application to the system which needed an update to the Mysql database. Unfortunately that process stopped the WordPress application that controls the blogs from accessing the database! (To be technical for a moment, the heart of the blog is a database, Mysql, where all the posts, comments and other data is stored and indexed. The actual placing and retrieval of the data is handled by the WordPress software, which runs a scripting language called PHP. So WordPress, PHP and Mysql all have to play nicely together. WordPress takes the data from the database and converts it to HTML pages for the Apache webserver to serve to your browsers (preferably Opera or Firefox!) so Apache has to be PHP and Mysql aware too. And then all these aplications have to be versions that run under the operating system Fedora Core 6.) The new application also uses a Mysql database, but required a newer version, and it was resolving that issue that caused WordPress to stop working. Had I done a clean install from scratch, things would have been a lot easier as all these applications are available pre-packaged, so they all work together staright away, but I wanted to preserve all my old configurations, so it made it a bit harder!

Anyway, the music application is called Amarok and it is excellent! I store all my music on a small network server as mp3 files where it can be accessed from playeers dotted around the house. Amarok catologues all that, plays it, downloads album covers, tracks the most frequently played etc etc. Really good! It will also connect to my Ipod, although I haven’t (yet) figured out how to download podcasts.

Meanwhile, back in the real world, it has just started to thunder, and I feel the need for a bacon sarnie. Actually that might be a bit tricky as my mouth is a bit sore this morning – might have to do with a scandishake! (I had a painful experience two nights ago – we had a chinese takeway – unfortunately one of the dishes contained some chilli – real agony!)

I managed the bacon sarnie, and have been a bit distracted while writing this, so probably time to finish and post it. However it is a while since I posted a photo of Olivia, so here is a recent one! She is growing rapidly – now has an engaging chuckle and is developing baby-talk! fascinating, I just wish I knew what it meant!

Onwards and Upwards!

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It has been a while since I did a countup from the transplant, but it really is 68 weeks since I received my donor stem cells, and of course 16 weeks since I was in Southampton recovering from the effects of the radio and chemo therapy! I am certainly feeling a lot better than I was expecting to after that first visit to Guy’s after I was discharged from Southampton!

So where to now? Well, I am taking the first steps in ‘getting my life back’ in going back to work, and although I am not medically fit for diving (yet!) I haven’t given up hope, and I was at the dive club last night. One of the (many) problems caused by this disease is an inability to plan ahead – particularly when undergoing treatment, as you can never tell how the treatment is going to affect you. The same is true of the early stages of remission. I guess that I am in remission at the moment, but of course, I have been here before, and there is always the ‘what if’ question lurking in the background. But that is no excuse not to make plans and look to the future! It is a while since we took a holiday, so that might be on the cards, and longer term I need to think about what to do when my current contract ends, at the moment in September 2008. So lots to think about.

At the moment I feel well in myself, apart from this sore mouth and sore lips caused by the GvHd. It makes eating a chore rather than a pleasure (although I am still managing the bacon sarnies – albeit with the crusts cut off) but mealtimes are not much fun. Favourite food at the moment seems to be lemon chicken and rice from the local chinese retaurant! Still, this should get better in time, and the rate of weight increase might get better!

The operating system upgrade did not go as well as expected! Although the basic system is working, in that the webserver and the ancilliary bits upgraded OK, the graphical interface and the associated bits did not (technically, I had problems with the X server – the main graphics module) and the ‘windowing’ system that provides the desktop and GUI). At the moment I have got it partially working – I am writing this post on the system, rather than another computer connected to it, but there is still a way to go! Still it has been an interesting learning curve, and it is only when things go wrong that you really learn how they work!

So, in time honoured fashion, Onwards and Upwards!

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The main server upgrade (phase1) has started – the blog is closed for comments at the moment and some facilities may not be available.

OK – first bit done – improvements to cooling and the backup hard-drive installed – now starting to backup the system!

Well, I got one working backup and the system has now been upgraded. There are still a couple of snags to iron out – the graphical interface isn’t working yet (the X-server) but I think that is a configuration issue with the monitor. However the important bits, webserver, database and the blog software all seem to be OK. Normal service now back!

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Check up time again, so it was off to Guy’s this morning, arriving bright and early just as the clinic was opening. In fact I was number 3 for the blood queue, and then it was a wait to be seen. In fact the examination was quite quick – confirmation that the sore mouth (which seems to be getting worse again) is GvHd, and that ‘It will get better eventually’ and confirmation that my blood counts are better – Haemaglobin now 12.3, which is at the bottom end of normal range. I came away with a prescription for more stuff for the mouth ulcers and an appointment for 2 weeks, when more blood will be taken for another chimerism test (to make sure my immune system iisn’t reverting back to my original). It has been a medical week, as yesterday I had the first of my immunisations – pneumococcus, and Diptheria and Polio. The last one will need another two boosters at one month intervals.

The pictures of Olivia are on the gallery (with some others!). The top one also features one of the delicious scandishhake food supplements (no – I wasn’t feeding it to her!) while the middle one shows her wearing some very stylish Ug boots – brought back from Australia by friend Marian! The bottom one was taken today after she eventually settled – she had some immunizations this morning, but not being used to being used as a pin cushion, found the whole business rather unpleasant.

Now a bit of geek stuff. Those who are interested in these things may recall that the blog and website are all running on a Linux based system (sitting at my feet as I type). The actual distribution is Red Hat 9 – a fine system in its day, but I have been running it for about 3 years (originally downloaded as a self teaching project) and it was 18 months old then. Things move quickly in the Linux world, and although I am a great believer in the maxim “If it ain’t broke, don’t fix it” support for this distribution ended in February, so I think it is probably time to upgrade. I have been tinkering with the latest stable version of this particular Linux distribution – Fedora Core 6 – or FC6 as it is colloquially known. FC6 is derived from the Red Hat products but it is a separate project in its own right. Red Hat now concentrate on commercial implementations of Linux in its enterprise versions.

Although FC6 is a little different from RH9, I am now reasonably confident abouit upgrading. However, as with all upgrades, I will be taking a complete back-up of the hard drive (effectively cloning it) so that if it all goes wrong, I can easily restore things. The backup and upgrade will take a while, so the blog may be unavailable for a few hours at various times – probably this weekend. I will put up a page saying what is happening while I am doing it.

So that is it for the moment… Onwards and Upwards!

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With May just around the corner, the recent good news etc, I thought it was about time for a new theme. Actually there are some practical reasons. Although I originally chose the last theme for the spring-like feel of the photo, the lambs are probably now cutlets, and I always found the ewe a bit menacing! The overall feel of the theme was a bit ‘heavy’ and the sidebar was filling up so much that you had to scroll a long way down to see all of it. So, a new ‘lighter’ theme, with a format in three columns. (Although as the columns are narrower, the right hand sidebar still goes down a long way – room for a bit more tinkering!)

I have tested this with IE, and it seems to be OK, but as always, I think that Firefox or Opera are better alternatives (and still better than IE7, which although – at last – has introduced tabbed browsing pages, still feels a bit clunky). You can download Firefox (it is free) and/or Opera from the link on the right hand bar. Try both – they co-exist quite happily!

Yesterday saw an expeditionary mission into the long neglected garden. Apart from a fine crop of thistles, it looks pretty run down, however a bit of gentle weeding and a scalping with the lawn mower got it looking a bit better. However there is some way to go! I found that digging a hole to plant a tree wore me out. I might manage to plant some seeds though!

Last night we went for a BBQ at Olivia’s (!). It got a bit chilly, so I had to lend her my hat…

It is a sunny day again today – I feel the need to BBQ and consume Pimms!

Onwards and Upwards!

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Well after 3 days at work (Wednesday was spent in London at a trade exhibition) I decided not to overdo things and not go in today – I did feel quite tired this morning, however it was good to go back! I do need to check with the team at Guy’s too, which I will do next Thursday. Still, I got some useful administration done.

After a lie-in this morning, I went into a nearby village to the local ‘tea room’ for a cup of tea and a slice of cake – in fact two slices – caramel fudge cake and lemon tart – both with cream of course, which together with the two rashers of bacon for breakfast has sorted out my calorie intake for the morning! It is a lovely sunny day down here and it was good to sit on Fred’s patio enjoying tea and cake! The sobering aspect though was the funeral of Eleanor Dlugosz – killed in Iraq last week – which took place in the Church just up the road from the tea room.

I gather that some of you have been unable to post comments in the last few days. I have installed a new spam filter and the settings were a bit too restrictive, which affects users using a proxy server. I have now relaxed that rule, but if anyone is still having problems, send me an e mail.

I have added a photogallery to supplement the blog. There is a link on the right, but you can find it here. At the moment it is all Olivia (some that haven’t been on the blog at all) but I will expand it to add more photos – mainly those that have been on the blog, and maybe some others.

Now I ought to go and see my friends at The Really Wild Bird Food Company as I see the bird feeders are almost empty!

Onwards and Upwards!

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And that next step was going into work! Although things have moved on without me, there were a number of administration tasks that were building up – and just going in is an important psychological step. I have to say that I was overwhelmed by the welcome (and rather humbled to find out how many people had been following the blog). There were certainly some comments about how much better I looked, compared with when they saw me last, back in January, and everyone was clearly on my dietician’s side judging by the packets of biscuits and very sticky cakes that were pushed in my direction!

I still need to be careful not to overdo things and I need to consult with the medical team about returning full time, but all I can say about today was it was good to be back!

Onwards and Upwards!

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It was a busy weekend! Just after I posted the last entry, I was visited by friend Adrian. Adrian (who has posted comments here) you may remember has a Caterham 7 and promised a while back to take me for a ‘Blat’ in it! Well he duly did so on Saturday – a great experience – thank you! The photo was taken just after we got back – I think the smile says it all!

After the adrenaline rush of Saturday, things calmed down a bit for Olivia’s Christening on Sunday. This took place during a normal service, and she was very well behaved – apart from the actually baptism itself, when she did have a little squawk! However she calmed down afterwards, as you can see here, with her in her Christening gown. She looks as if butter wouldn’t melt in her mouth, however Richard wondered if she was hiding a Pimms underneath her towel in Saturday’s post. Well, while I can neither confirm nor deny that, I have got this photograph…taken about 3 weeks ago!

There are quite of lot of photographs of Olivia now, and I am thinking about setting up a photogallery with more photographs of both Olivia and some of the others that I have posted on the blog.

So that is it for today… as always – Onwards and Upwards!

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Just a quick post to thank you for your kind comments following Thursday’s news, and to say that I have heard from fellow transplant patient, Mark. He posted his news in comment 5 on Thursday’s post, so please look at it! Keep it up Mark – and enjoy the sun (but don’t forget the sun block!).

The pictures of Olivia were taken during the week!

It is another glorious day here. We did enjoy the first BBQ of the season last Sunday, while recovering from Saturday, and it was also an occasion for the first Pimms of the summer! I’m happy (and relieved!) to say that my impaired sense of taste rose to the occasion and it was as enjoyable as I expected! One odd thing is that very fizzy drinks seem to aggravate my mouth, but the Pimms (mixed with dry ginger – less sweet than with lemonade) seemed to take away some of the fizz. Anyway, I anticipate enjoying another one later today!

There are now some picures from the wedding fair here and I will be putting some more there later today.

Tomorrow is Olivia’s christening. The poor thing was a bit unwell yesterday with some stomach upset, but she is much better this morning and almost back to her usual self. I will post a photo or two from the christening (perhaps I ought to start an Olivia photo gallery… or a repository for all the photos I have posted on the blog).

Onwards and Upwards!!

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And it was off again at silly o’clock and a chilly start (3C when I got in the car to go to the station) for the trek up to Guy’s, this time uneventfully and I arrived just before 9:30 for my 9:45 appointment. Straight in for the bloods (only two test tubes this time) and then in to see Dr kazmi. The official news from the PET report is that the residual tracer showing up is normal physiological activity – ie, there is no detectable active disease! Good news indeed, but of course the note of caution is that we have been here before…! Still, much better than the prognosis three months ago!
Incidentally, this photo (which I have copied from Elspeth’s Blog shows how far I have come in the last three months! That said, walking up a couple of flights of stairs (just to prove I could!) was an effort – more food supplements! (The photo was taken at the Wedding Fair, with my fellow Leukaemia Care trainers)

The conclusion is that the graft Vs Lymphoma effect is definitely working, the unknown questions are how long it will continue (although the GvHd has only just started) and how long the effect will last (ideally indefinitely to continually zap the rogue cells) but these are unanswerable questions. The last dose of donor lymphocytes was a fairly hefty one, and of course was the last dose in storage, but it might be possible to harvest some more from the donor if needed. But let us hope that they won’t be!

I saw Sarah (of like2like – the web site highlighting the lack of mixed race donors) who was looking really well and also seems to be in remission, and Jean (who had her transplant just after me) who was also looking good. No news of Mark (fellow transplant patient) though – so Mark, if you are reading this – please let us know how things are going.

After leaving Guy’s, I popped over to the Strand to meet a friend (and work colleague) for a coffee (tea in my case) and a piece of cake. London is at its best in the spring – it was pleasantly warm! Then a quick trip to Waterstones and back home!

What more can I say (apart from more thanks to my anonymous donor and the team at Guy’s) but… Onwards and Upwards! (and to change the category of the posts to ‘Getting my life back’)

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