Peter's Hospital Diary

Felicity arrived home yesterday after what was a busy week! I have to say that she looked tired when I picked her up at the station, but she was certainly on a high after the week! I dropped her off at home to let her sort herself out (bath etc) while I went out for dinner with Sue and Mark (excellent evening – as usual!) and then I came home fully expecting Felicity to be spark out after her week! But no, she was still on a high and we stayed up late while she told me all about it! It certainly was an experience, running a section of one of the main restaurants with over 50 tables and 600 covers!

This morning she was up bright and early to take Rachael to work, then we had a visit from Vicki and Olivia, and so here is what you have all been waiting for, more pictures of Olivia! As you can see, she is almost at the crawling stage, and I managed to get a photo (a little out of focus!) of her with a chuckle on her face! It was good to see them! As a celebration we went down to the local pub for Sunday Lunch!

And after the baby photos, a bit of geek stuff! I have continued exploring the capabilities of the new operating system, particularly the audio-visual stuff, and I have now got it playing DVDs quite happily, something I have never managed with the previous version. The USB support is also much improved. This was always one area where Windows seemed better, but not so much now. I can plug the camera in, a window pops up displaying the contents, with a simple option of downloading all the photographs into an optionally named directory, and deleting them from the camera, in maybe 1 steps. Perhaps the later versions of Windows can do that (XP or Vista) but then they are not free! Linux might not yet be a contender for mainstream everyday computing (it still needs a bit of understanding to get it going – certainly the free versions) but it is getting there. Interestingly, Dell now offers its computers with the choice of having Linux installed as a commercial (ie, fully supported and customised to do what I have had to do manually) variant – well worth looking into!

It is a wet and dreary day today. The lemon tree is looking healthier, although the heavy rain snapped off a new branch with a cluster of leaves on it – I think from the sheer weight of water. Still, there are lots of new shoots appearing!

One more item, more news about PatientLine here!

Nothing much to report on health wise, so on with the soggy bank holiday weekend!

Onwards and Upwards!

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And here we are at the start of the bank Holiday weekend. It has been a lovely sunny week too, but true to form I see that the weather is due to break during the next couple of days! Overall, it has been a pretty uneventful week! On Wednesday evening I was going to the dive club, originally for a course on diving with enriched oxygen breathing gases (Nitrox) but it had been postponed until next week. And yes, I know that I am not medically (or physically) fit enough to dive at the moment, but I haven’t given up on that front!

And that leads neatly into the next topic… There has been a bit of introspection on this blog lately concerning the effects of the illness and the treatment, and in particular how it affects the ability to make both short and long term plans. This theme has also been echoed on John’s Blog which also reflects on the circumstances of his illness and how it has affected him, and also on Elspeth’s Blog. John in particular has very altered circumstances which has had long term effects on his life. Those changes have been less profound for me, but the greatest loss has been the lack of ability to plan, and in the darker moments there has been a feeling of “Is it worth starting this as I may not get to finish it”. Fortunately that feeling has soon passed! With that in mind, making these plans is an important part of ‘getting my life back’! So as part of that we have booked a holiday for the end of July, travelling down to stay with fellow blogmaster Mark and his wife, Sue, in their French Farmhouse. The first holiday we have taken for a couple of years, and I am really looking forward to it!

I have spent a bit more time in the garden – some of the lawn has been cut, although pushing the mower (it is a motor mower, but not self propelled) was an effort, and the longer grass at the bottom might be a bit too much. Again frustrating and a reminder that I still can’t do things that I used to take for granted! However the garden is looking brighter with the tubs and pots of bedding out plants.

I have also been e mailing a few long-lost friends about the events of the early part of the year and I was looking back at the blog postings for January. It seems very distant now, although it was only four months ago, but I have come quite a way since then. The thing that again struck me was the large number of supportive comments (those posts probably attracted the largest number of comments) so once again, thank you all for your support both at the time and subsequently, and all the crossed appendages! (Which I hope are still crossed for the ongoing recovery! )

On the health side, and despite the difficulty pushing the mower, I do feel stronger and I think I have put on a bit more weight. I think I look healthier too! However the best news is that my mouth doesn’t feel quite as sore as it has done. I have to be careful with hard or dry food such as dry toast or biscuits as they tend to be rough or stick into the inside of my cheeks, and lack of saliva makes chewing tricky, but things do seem to be getting better. One problem is that after so much food, saliva dries up and I can’t eat any more! I also find the same thing after exercise (even pushing the mower round) and I end up with a very dry mouth and sore throat. Still, it is slowly improving. My lips are still sore (very cracked and raw) and spicy or very acid food is best avoided (although Branston Pickle seems OK in small amounts) but it does mean I am drinking a lot of water with food, which is a good thing. However Rachael and I did enjoy a Chinese take-away last night, lemon chicken and sweet and sour king prawns. The sweet and sour was OK, although there was a limit to how much I could manage, but lemon chicken is definitely OK!

Finally, apologies for the lack of photos of Olivia! With Felicity being away and my returning to work for more days, I haven’t seen her this week, but I’m sure that will change at the weekend! Next task is to give the house a once over before Felicity gets home tomorrow!

Onwards and Upwards!

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Half way through the week, and neither Rachael nor I have starved, although part of that is thanks to friend Marian, who invited us round for dinner last night and also Felicity who left a mountain of food in the fridge and freezer!

I think her job at the Chelsea Flower Show is going well, this photo, taken by Marian on Monday, shows the outside of the restaurant where she is working. It sounds like hard work with long hours, so I don’t think she has been able to get out and about to see the exhibits! However she has been offered the prospect of more short term work at other events – all useful experience for the event planning business. The other photograph shows the inside of the restaurant. .

Apart from a damp Sunday night, it has been sunny down here, and I have been out and about in the garden. Nothing too strenuous, but since it doesn’t look as if Felicity will benefit from the horticultural side of the Chelsea Flower Show, I have been planting out some window boxes, tubs and pots, and a couple of fucsias into hanging baskets. The lawn is looking a bit ragged, so that might be a task for later this afternoon after work. All part of a gentle exercise regime to get my strength back! While I was at the garden centre, I asked for some advice about the lemon tree, which is looking a bit the worse for wear, having lost nearly all its leaves in March, and recently some new growth acorn sized lemons. It appears to have had the citrus equivalent of a hissy-fit; something has upset it, probably the large difference in day and night temperatures in the conservatory in late March, but now it is outside, it should recover, and it is indeed putting out new shoots and leaves. I don’t think we will get anywhere near the dozen or so lemons we got off it last year though!

Anyway, I had better get on with some work so I can go and cut the lawn later!! Onwards and Upwards!

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And indeed it is a lovely day here. I was up early this morning to take Rachael to work (Felicity is now in London, so we are ‘home alone’) and it was (and is) a lovely morning – improved by the consumption of the inevitable bacon sarnie!

However the highlight of the weekend was a visit by some old school friends! To put things in context, about 15 years ago (after a suitable lapse of time since leaving school) I joined the ‘Old Boys’ Association’, partly out of a sense of nostalgia (which isn’t what it used to be) and partly curiosity – just what were the people I grew up with like now?

The main event of the Association is the annual dinner, when we all get together at the school, reminisce about basher Bloggs and his prowess at throwing board rubbers at dozy pupils, and kid ourselves that we haven’t changed a bit, and that we are as vigorous and youthful as we were xxx years ago. At first my year was noticeably absent, but since the early 1990s, the numbers have grown and we now get a good group together.

My treatment precluded me from attending last year, so I had hoped to go this October. However after the grim news in January, it seemed that not only would I not be attending this year, but probably never again, and I sent a sad e mail to the guy organising our year table.

Back came the response “If you won’t be able to come to us, we’ll come to you” and a plan was hatched for a group to travel down to see me. Well, as things turned out, the grim news proved to be exaggerated, but the plan remained, and yesterday four friends turned up (some I hadn’t seen since I left school) and out we went. We had a great time, but one of the nicest things was that it wasn’t just reminiscences about the past, but also an exchange of contemporary life too. However the banter was still there! It was a great day, boys, thank you! (And good luck with the book, Gary!) Anyway, the photo shows Me, Steve, Bill, Clive and Gary back at my house after lunch.

Onwards and upwards!

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Well, just Guy’s really… yes it was check-up time again and so it was off on the silly o’clock special to London Bridge. This time with Felicity who was going off to Chelsea for an induction day for a job at the Chelsea Flower Show! Maybe the garden will be looking good in a couple of weeks???

The visit was again it was pretty routine stuff, although this time I had 7 test tubes of blood extracted, some of those extra ones were for another chimerism test to check that my DNA is still 100% donor (in the blood department).

My consuultation with Dr Kazmi (big boss) went well. He remarked that one of the enzymes that characterises liver function was slightly above normal at 77 instead of the normal upper level of 70, but since people with hepatitis have levels in the 1000s it isn’t too much to worry about! (However GvHd can affect the liver so it is something to keep an eye on). One reason could be a slight iron overload from the blood transfusions.

My kidney function is still down, characterised by higher than average creatinine levels. Part of this is caused by the chemo, however being slightly dehydrated can cause this, as can developing muscle. I am exercising more, and so that could be a reason why that is up slightly. Again no cause to worry, but something just to watch. As for the sore mouth, I am being referred to the oral specialist to see if there is anything else that can be done to improve things.

It was good to see Mark and Sarah this morning (both fellow transplant patients). Mark was looking a lot better than the last time I saw him, helped by his return from a holiday. Sarah (of like2like fame was also looking good!

As the whole process had taken just under an hour, I arranged to meet up with a work colleague for tea/coffee and a large slice of full fat carrot cake and then it was back home again!

On the computer front, I have now got my Ipod working with Amrok (pretty good on a linux machine as Apple don’t support it) and have subscribed to a couple of podcasts (including The Electrical Language music podcast hosted by friend Gabor. He really does find some good independent music tracks – give it a listen!

So that is about it for today, and since the last thing I ate was that full fat carrot cake, I think I might just have a bacon sarnie!

Next check up in four weeks, so Onwards and Upwards!

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I fear I may have given a bad impression of my upgrade experiences! Actually the problems were mainly caused by the fact that I was upgrading by installing on top of an existing installation (something not recommended by the Fedora Project) but that was so that I preserved all the original settings for the web server, and the various other tools I had installed on the system, and in fact the strategy worked. The webserver and all the other bits and pieces worked immediately after the upgrade, the problems were caused by the graphical tools that I use for general computing! (again poor practice really – a server should be dedicated to just that, but the set up works!

I have added links to the last post for anyone who is interested, and the system is now working well both as the server, and as my general computer. However Amazon have just delivered “Fedora Linux” by Chris Tyler (published by O’Reilly) which I would recommend to anyone thinking about installing a Linux system. (Other books include“Fedora 6 and Red Hat Enterprise Linux Bible” or “Red Hat Fedora Core 6 Unleashed”) Any one is well worth the investment! (Perhaps I should have read it before embarking on the upgrqade, although I’m not sure I would have changed the overall strategy.)

Having browsed the book, there are somethings that I might have done differently and some more things I should do eventually. Certainly a clean install on a fresh disk drive would have been less messy, but it would have taken longer to get the blog and everything else up and running. Still, I learned a lot in the process!

It is still wet and windy here in Hampshire, I am at work at the moment (it is a quiet afternoon) but I shall be leaving to brave the traffic shortly! Another stage in getting my life back!

So… Onwards and upwards!

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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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