Peter’s Hospital Diary

And the title says it all! Monday and Tuesday were fairly normal, but on Wednesday evening, Roo had a party for 30 of her friends as they are all leaving school and going on to 6th form college. Luckily the rain held off, as they were in the garden. We did have a gazebo up and that would have provided some shelter had it rained… However it was a late night for them – and as they were nattering into the night, for us too! I was up early on Thursday for a meeting in Bristol, collected at 7:15. Luckily I wasn’t driving so I could (and did!) doze most of the way there. A good meeting and I was back fairly early in the afternoon.

Friday was my last day at work before we go on holiday. It was a quiet day, so we strolled across to a local snackery were one of my work colleagues treated me to a bacon and egg roll! Thank you Jayne!

Last night (Friday) was the Summer Ball at work. We took Vicki and Tom, Katie and Rachael and had a great time. We were lucky(ish) in that although we had torrential rain in the afternoon, the rain held off in the evening. It was cool, but we all had a good time and stayed pretty much to the end at 2am! I managed the food (apart from the spicy stuff – it was a cold buffet) although my tongue was a bit sore this morning. We did take some photographs and when I have sorted through them, I will put them on the gallery.

And tomorrow we are off to France! It was a late start this morning – kicked off by the postman delivering THE book! (That which I need not name!) Since then we have taken things quietly, getting clothes together etc. We have a little shopping to do, then it is off at 6 ish tomorrow morning to get the high speed ferry to Caen and drive down to the Dordogne. I am planning on taking the laptop with me so I will be updating the blog and maybe post the odd photo! This is the first time we have been away for a couple of years – so another step in getting my life back – I am really looking forward to it!

Finally, on the tech side, I have finished tweaking the computer and the file systems are now all on logical volumes (this means that I can resize them more easily when they are on line). The final stage took a bit of working out, but I learned a lot while working out how to do it!

So Onwards and Upwards!

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Not a lot to report since the visit to Guy’s, although it did take a day or so to recover from the brisk exercise walking round the shops in London! However we did get a visit from Vicki and Olivia yesterday afternoon – and as Olivia was looking particularly cute, I had to get the camera out! There are a few more from yesterday in the Gallery.

Felicity was babysitting at Olivia’s last night, so I took the opportunity to sneak out for a swift pint with fellow blogmaster, Mark, and friend Mike. Then off to Caroline and Gabor who live conveniently close to the pub for a chat and a snack! Many thanks Caroline – it was a good evening! While I was there, Caroline remarked about a petition concerning the proposals to dilute the physics GCSE syllabus. If you are concerned about this, the petition is at http://petitions.pm.gov.uk/physicsedu/.

I’m afraid I haven’t got any up to date photos of the other star of the blog, Vicki’s dog, Max, but as soon as I have, I will post one (just for you, Richard!)

I see it is sunny again now – 2 hours ago we had a torrential downpour and a thunderstorm!

Onwards and Upwards!

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Well not strictly true because on my arrival at the haematology department I was met by the receptionist, Jenny, and then ushered in for the ritual blood letting that makes the highlight of the day! After that bit of routine stuff, I was then seen by Rachel, my tame dietician, who wasn’t as fierce as last time as I have put on a couple of pounds! She is also pleased generally with my diet (and the daily scandishake) and said that she thought I was looking healthier! The strength in my right hand was slightly down on last time, but the strength in my left was much greater – must be carrying a briefcase into work! (I carry it in my left hand, although I am right handed.)

After the chat with Rachel, it was in to see one of the medical team. A quick examination, no surprises and then I was finished for the morning, so it was off to the shops for a while.

I was back in good time for the oral clinic in the afternoon, and went in on time for an examination by Dr Shah. She was pretty thorough and remarked that my tongue seemed to have a bias to the right. She went off to get the consultant, Dr Shirlow, and a clutch of medical students, so my powers of oratory were required to present my case! Dr Shirlow had a good poke round, and again remarked about my tongue. The upshot was that as there was nothing sinister there, and my speech had become ‘slurpy’ after the biopsy, the likely cause of the slurpiness is the lack of mobility in the right hand side of my tongue, and that is almost certainly caused by some nerve damage when the biopsy was done. In fact she did get an oral surgeon to have a look too, and he pretty much confirmed it. It is unlikely to get any better, but I will probably learn to compensate for it as time passes. As it is, my voice is clearer, with just a hint (to my ears) of a lisp on the ‘s’ and ‘sh’ sounds, and although it is a pity that the damage is likely to be permanent, it is a relief to know what the cause is, and that it isn’t anything to worry about.

I did have a few tests, two saliva collection tests (one involved dribbling into a test tube for 10 minutes, the other involved having a suction cap placed over on the the glands in the cheek, and a drain attached, while it was stimulated with citric acid!) And delight of delights, more blood taken to check on iron and vitamin levels! I also left with another large carrier bag of pills and potions.

I suppose I have no option but to see about getting the damaged tooth removed – I will look for a referral back to Guy’s for that and have it done there – doped up to the eyeballs with valium or whatever else they have on offer!

So it was a long day, and I didn’t get home until well after 7pm.

It was good to see fellow transplant Mark, who was looking much better than he was on the last two occasions I have seen him. He had a DLI 6 weeks ago, and the GvHd is just kicking in. He is on weekly check-ups, much to his annoyance as he is planning a longish holiday! I think he was planning some negotiation with the team! By the way, mark, the VoIP site I was talking about is www.sipgate.co.uk. Hope you got the check-up arrangements sorted to your satisfaction!

The tweaking of the blog server has continued, with a couple of longish (about an hour) downtimes, so if you haven’t been able to log on in the evenings that is the reason. The main bit is done, but the last section (migrating the root file system to a logical volume – to be technical) is proving more problematic – the system won’t reboot after I have done that. It isn’t THAT important from a practical aspect if I don’t achieve it – but from an intellectual point of view, I am keen to achieve it, both because it is a challenge, and secondly because I will learn something from the exercise! That means there might be one or two more periods of down-time while I carry on tinkering!

So onwards and upwards!

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It has been a busy week down here, a bit of self feeding and looking after Rachael on the days when she wasn’t out and obout or away. My parents came down for a visit on Friday and left yesterday afternoon, and Felicity came back last night from a busy week at the Henley Regatta. And finally Katie brought back the remainder of her things from Bournemouth – and is finding it difficult getting into her bedroom!

We have a couple of lodgers next door – in their pear tree which is just outside a bathroom window. They are a pair of collared dove chicks, and are only a couple of weeks old. At last we know what makes all the flapping at about 5:30 every morning!

Meanwhile on the health front my mouth seems to be a little better, although the prospect of food is still a pretty unappealing thought. However I have had a few bacon sarnies to keep the hunger pangs at bay, and the consensus of the family is that I might have put on a little weight. I must check on the scales, but I may be weighed when I go up to Guy’s this Thursday.

This week is a double appointment – the haematolgy clinic in the morning, follwed by the oral clinic in the early afternoon, so we will see what they say.

So very much onwards and upwards!

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Felicity has gone off to another event – the Henley Regatta, although it is debateable whether there will be more water falling on the Thames than is in it, judging by another downpour we had here this morning. In fact I have now taken the bourgainvillea back indoors after I found it standing in a pot of water this morning. It will, I hope, dry out a bit in the conservatory. The lemon tree also looks wet, but is a bit heavy for me to manage on my own. It seems pretty healthy, although it has shed a couple of embryonic lemons. However it must be tasty as there is evidence of caterpillar damage to a couple of leaves (and I picked one off it this morning).

I am now pretty much recovered from the week-end of lecturing. My mouth seems slightly better, I hope a result of carefully applying the Adcortyl to the affected areas and the continued regime of softer food. I have my appointment with the oral team on Thursday week (12th) so it will be interesting to see what they say. I also had my last two vaccinations this morning, the last diptheria, polio and tetanus and the first hepatitis A vaccine. The next one will be a ‘flu jab oin October, and a booster Hep A next January, so in a couple of weeks I will be able to use the other ointment that I obtained on the last visit to Guy’s.

I am considering a couple more tweaks to the blog server this week, so it may be off-line for some short periods. Persevere – it will be back. The changes will probably be in the evening, and I hope it will be off-line for no more than an hour at a time. (For those of geek persuasion, I am going to change the file and disk system to Logical Volumes, rather than fixed size partitions, which involves creating the logical volumes, copying the various file systems to them, then reformatting the old partitions to logical volumes)

Onwards and Upwards!

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Up in Worcester where I spent the last two days on another step on “getting my life back” by taking part again the LeukaemiaCARE training programme. I was a bit worried about the lecturing and teaching because of my mouth and the effect that talking for so much would have on it, and more importantly, the effect on the intelligibility for the course students, but it proved not to be a problem, and as I was co-presenting with another volunteer, Mike, it wasn’t too much of a strain on my voice as Mike took over the difficult bits! Thanks Mike!

It was an enjoyable two days and so good to be getting back another element of my life. There were also some funny moments! We went out for a meal in the evening, and I very carefully chose food that I thought would be bland and soft. However the restaurant was a bit busy, and when the main course arrived, it was with chips (and I had asked for rice). That was changed, and it came back with rice, and I took a mouthful… and discovered it was Piri-piri rice with bits of chilli in it! I dropped my fork and legged it to the bar for a glass of water to put the fire out! It did the trick, and my meal was then served with boiled rice – and all was well! Other positives were that I was able to manage a cooked breakfast (bacon, mushrooms and scrambled eggs at the B&B. I have to say that I have been pretty tired today though!

There have been comments about the lack of news on another star of the blog, the bourgainvillea! So here is a photo of it, with the rejuvenated lemon tree! I am a bit concerned about both of them with the rain, as neither of them like to have permanently wet roots, so if the heavy rain persists, I might have to bring them indoors.

And finally, another photo of Olivia (and a similar one posted in gallery). She came over last night to stay to give Vicki a good night’s sleep, and she was good as gold. She was a little unsettled at first, but went to sleep at about 11pm, slept for 3 hours, then after more food, sleop for another 5 hours. A bit more food and she slept for another 3. Hard to believe that she is now nearly 6 months old – and of course 6 months since I came out of Southampton General. Reading the posts at that time (in the January archive) it seems hard to believe… On that subject, you might want to pop over to say ‘Hi’ to a brave man at John’s Blog where he is having a bit of a tough time

And finally, there is a bit of news over at PaytientCrime!

So a good week with some major milestones passed – Onwards and Upwards!

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However, although we did have some torrential rain over the weekend (and a couple of short duration powercuts on Friday (one long enough to cause the web server to shut down)) we don’t seem to have had the problems that have beset West and South Yorkshire. At least the sun is shining this morning, but a quick stroll round the garden showed that it is very bedraggled. With a bit of luck the rain will hold off for a couple of days and all will recover.

Felicity came home on Saturday evening, after her week at Royal Ascot. Next event is the Henley regatta in a couple of weeks!

On a more serious note, I was reading the latest post in John’s blog where he describes his fears at finding a strange lump. I recognise those fears! There is always the feeling of continuously ‘looking over your shoulder’ in case something happens again. I am certainly (having had several relapses) very aware of strange lumps, and in fact about three weeks ago, I found one in my chest. Now I was pretty sure it was where I had bumped into the corner of the car door, and it felt different from the lymphoma lumps, and it was where there are no lymph nodes, so logically it probably wasn’t anything to worry about…. but…. those little ‘what if?’ gremlins still whispered in the small hours of the morning! By the time I went for my last check up, it had gone, although I did mention it to the team, but it was nothing to worry about! And I wasn’t worried, really!

Olivia came for a visit on Sunday, and here is one of the latest photos. There are some more here in the gallery (to return to the blog, go to the gallery home page and click on ‘Return to blog’ link.)

Finally, on the mouth front, things seem to be getting a little better. I have been very careful about what I eat, soft food, especially in the morning, and making sure I have a scandishake every day. I have also been very careful about applying the ointment (Adcortyl) to the affected spots. I have switched bacon brands for a less salty variety as a consequence I have managed a couple of bacon sarnies! (after a week of abstinence!) I am also trying to drink more (water!) as helps prevent sticky spit, which makes food less appetising and harder to chew and swallow. However my waist size is now 30″ – this time two years ago I was a 36! Last time I was that size was when I was 14!

Onwards and upwards (and perhaps outwards by a couple of inches!)

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Another week nearly gone, and I have survived being home alone! It actually ends on Saturday, but I am over halfway! Sadly I haven’t been able to survive on a diet of bacon sarnies – my mouth seems to have been worse this week, and eating has not been a pleasure! Breakfast has been limited to porridge (nice and soft) and my scandishake intake has been pretty high (in fact I have had to order some more). Evening meals have been OK (lots left in the freezer from last time) but eating them has been tricky. However I am applying the ointments (although I cannot use one because of the vaccination program) so I hope the situation will improve soon – particularly for next week when I would like to take part in the Leukaemiacare training programme again!

In the last post I mentioned that I was migrating PatientCrime to a message board format, but had some issues with password notification. This has been an interesting challenge, but eventually came down to the configuration of a program called sendmail. Sendmail is a Message Transfer Agent, a low level program that moves e mail from one machine to another. It is widely used on the internet and has been around for some years. However the advent of SPAM means that it has to be very carefully used, and I needed to configure it to send system generated mail to my ISP for them to forward to the end user. (Anti-spam precautions really preclude me from sending e mail out directly – few ISPs would accept it) Anyway, it has taken a while, but I think I have finally cracked it and did some final testing last night and today, so I think I will migrate PaytientLine this weekend. (The issue with system generated mail is different from that generated using clients such as Outlook or Thunderbird). There was (to get really tekkie) a problem with DNS lookups, which I never fully solved, but found a workaround instead!

Oh yes – and today is of course midsummer’s day, and the longest day! But as I pointed out last December (what a long time ago that seems) it is not necessarily the latest sunset or the earliest sunrise! (I can post more if you wish!!)

Other than that, all seems to be OK, so…

Onwards and Upwards!

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I think you get the picture, and it has been like that most of the weekend! However it was a good one – out for lunch on Saturday with Mark, (fellow blogmaster), Gabor (podcaster) and Mike (the fourth member of the gang) for Mike’s Birthday. I have discovered that as long as I drink beer before food, I am OK, but food irritates my mouth too much to drink afterwards! Still, I managed most of my meal and then headed back to cook a BBQ for Katie’s (middle daughter) birthday. I couldn’t eat anything though, after my meal out (partly because I was full, and partly because of mouth) although I did eventually manage a small Pimms!

Sunday went well – some new (smaller) clothes as a present from the girls, and more variable weather, and also doing a bit more converting Paytientcrime from a blog to a bulletin board. The importing of the data is complete, but in order to post anything on the BB, users need to be registered, and there is a snag with the mechanism that sends the user registration data out to new users. However if you want to look at the new board, yopu can find it here. You can register, but I may need to send out a password manually.

This week I am ‘home alone’ again as Felicity is now at Royal Ascot, running one of the hospitatlity suites!

Onwards and Upwards!

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It was another trip up to Guy’s yesterday for the routine check-up, and it was just that – routine! Not quite as much blood taken as normal (only half an armful) and nothing unexpected in the results. Haemoglobin hovering around 11.5, creatanine still slightly up, but not much different from last time, similarly with liver function. Next check up in 4 weeks.

However we did discuss the condition of my mouth, and the feeling is that the GvHd is borderin g on the chronic phase, rather than the acute, which may be why it is taking so long to clear up. While chronic GvHd can be a serious condition (see John’s Blog for just how it can be) it is still mild, but needs keeping an eye on. Of couirse while GVHd is present it is an indication that my donor lymphocytes are still active, and while they are active, they are on their ‘search and destroy’ mission! Crack on lads!

While I was at Guy’s, I discovered that the lovely Linny (who lefyt 2 months ago had a baby boy last month. Congratulation! And congratulations to Clare (one of the nurses from Stanley Ward and the vday unit) who is expecting a baby next month!

I mentioned the PaytientCrime blog last time and how I wasn’t sure if a blog was the right format. I am in the process of setting up a Bulletin Board/Forum style site to see if that is any better. It is still in the early stages, migrating the data and posts across is quite time consuming, and in the process I discovered a bug in the theme for this blog – comments made in response to pages (those posts that appear top right) can’t be accessed. Not my mistake, but something I will try to fix.

I hope the new forum will be set up by the end of the weekend.

Looking out of the window, I see that we are getting the heavy rain that hit Yorkshire yesterday, it doesn’t look good for the BBQ we have planned tomorrow for Kt’s birthday.

Onwards and Upwards!

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