Peter’s Hospital Diary

Not much to report on domestically – we did some work in the garden on Saturday and Sunday morning (I say we – mine was very light work! 0 and enjoyed it on Sunday afternoon when the sun shone! Olivia came over on Saturday (with Vicki!) but she was a bit tired and fractious so no photo opportunities. I have done a bit more re-arrangement of the gallery, starting to subdivide the Olivia Album into month by month sub-albums. I’m not sure if it is an improvement though, as it makes scanning all the thumbnails a bit time-consuming, so I may go back to the previous style (comments please!)

Just after I wrote the last post, I went to John’s Blog which rather put my woes about my mouth into perspective. John’s problems were mainly caused by Chronic GvHd (with one or two other complications) and is a reminder of just how debilitating it can be (warnings that the team at Guy’s did make). However I initially found John’s last post a little disquieting as John has always been a fighter, and at first I thought that he was giving up the fight! However on re-reading it, I realised that I had mis-interpreted the spirit of it, as it took me back to my dark couple of weeks in January, and my feelings then. With hindsight I can see the difference between ‘acceptance’ and ‘resignation’. It is a fine line, but I see acceptance as being accepting of things as they are, it does NOT imply giving up, while resignation (to me) implies giving up! So I know that while John may accept his situation, (and so will move forward) I know he won’t be giving up the fight! We are all behind you! (Behiiiiind you…. – sorry – it isn’t panto season yet!)
So crack on John – and apologies for (briefly) doubting you! 🙂

Meanwhile there has been some activity on PaytientCrime with two comments from a PatientLine employee. they were attached to one of the earlier posts, but I have moved them under my latest post. He/she makes some interesting points. On the subject of paytient crime, I’m not sure that a blog is the best format for it, a message board/forum might be better, so I will be experimenting with that when I get a moment; the problem will be migrating the data across.

I have finally received my appointment with the oral team at Guy’s! It popped through the door this morning – and is scheduled for 12 July! My mouth seems a bit better today, but I have been treating it gently. This has paid off as I enjoyed a bacon sarnie this morning!

I’m still undecided about re-naming the blog – ‘Peter’s Diary’ is probably my favourite contender at the moment!

Onwards and Upwards!

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I had a good couple of days back down in Plymouth – it was good to return, although the reason was work related, but even the meeting went well, and I left on time to get back home in the early evening. As travel goes, it wasn’t that glamorous, but it is another small step in ‘getting my life back’! And it looks as if the lemon tree is also picking up again after its earlier hissy fit. It has lost some branches, but the new leaves look healthier. I’m not sure that we will get any lemons this year though… 🙁

I rather glossed over last weekend, but I happened to mention smoked food in the comments, and provoked several other food related comments, so as this blog has never shied away from talking about food…!

The occasion was a party at my next-door-neighbour’s house to celebrate their daughter’s 18th birthday. Like us, they like a BBQ (in fact they are far more prolific BBQers than I) but while I am all in favour of gas BBQs, Chris prefers a proper charcoal fire! (In truth I do too, but preferably in half a 45 gallon oil drum cut in half, top to bottom, but that makes it a bit big for a domestic event).

Anyway, to get on with the story, Chris has just a bought a smoker and having BBQ’d during the party, he decided to carry out his first ‘smoking’ on some chicken pieces. I have to say that at the end of 2 hours, they smelled delicious, although as I had already eaten quite a lot, and my mouth was sore, I didn’t try it. However it did lead onto discussions about what else could be smoked. The obvious candidates are gammon, beef, and oily fish such as salmon, trout and mackerel. But cheese is also a contender, so I am looking forward to his next experiments!

I have to add that talk of food is still a mixed pleasure at the moment. My sense of smell is slowly returning, and my sense of taste is also improving slightly, but I still have to careful about what I eat as my mouth is still sore. It is slightly worse today after my stay away, because I had less control over what I was eating, so while I managed a pretty much normal diet, some of the rougher texture food has irritated my tongue again. Chairing a meeting (lots of chat!0 didn’t help either! I am also conscious of the fact that I am now a very slow eater, mainly because I need to cut food up into very small portions to make chewing easier. It is very frustrating! However, in the grand scheme of things, it is a small frustration and minor inconvenience.

This morning I managed porridge, but a ham sandwich for lunch was tricky, and I am half way through a scandishake (brought to work in a flask) However I do seem to be putting on a little weight and some of my clothes fit slightly better than they did four weeks ago.

I haven’t taken any new photos of Olivia, but I have got some that Vicki has taken. They have been added to the gallery. Incidentally, it is possible to jump straight back to the blog by clicking on the ‘Return to Blog’ link (in blue) underneath the description on the gallery main page.

I haven’t come up with any ideas for renaming the blog. I could (as Neil G suggested) drop hospital from the title, but as this blog was initionaly about my hospital and health experiences, perhaps not. Maybe just change the description – which was last changed in August 2006!

Onwards and upwards!

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The pictures of the garden looked so nice, I thought I would post another one! In fact there were a number and this spurred me on to add some more photographs to the gallery (which you can also get to from the top of the page). I have loosely categorised the topics and added some, of the photographs that have already appeared in the blog over the last 18 months (!) and in same cases added a few more. I will continue to add to it. Some of the photograph dates are wrong, but I’ll correct those in time.

And as the title sys, it is a sunny but windy morning down here. I have another vaccination later this morning, then into work for the rest of the day. I may be off to Plymouth tomorrow – work related and not quite as exciting as Washington (DC, that is, not Tyne and Wear!) – but it is a bit of travel!

Olivia is coming over this morning so I might just wait a bit and see if I can get another photo!

Next check up at Guy’s is a week on Thursday 14th so it is all pretty quiet! However, as Neil G pointed out, I spend so little time at Guy’s that the blog title is becoming incorrect! There have been some suggestions, any others would be welcome, although as it has chronicled my hospital and post-hospital experiences, I’m not sure I want to make too many radical changes! I suppose it depends on the direction the blog takes!

Onwards and upwards!

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And where has the week gone? Good question, answers on a post card please (or a comment!). I did have the Monday and Tuesday off, and spent the days pottering doing minor jobs round the house and a bit of light gardening – including cutting the grass. Then it was back to work for the rest of the week. And talking of gardening, here are some of the tubs I planted out a couple of weeks ago.

It seems I might have been a little optimistic about my mouth, which has become sore again. I think I might have just been too adventurous with some food, and my cheeks have become sensitive again! So it is back to the scandishakes and soft food for a while.

Other than that, there is nothing to report healthwise which I suppose is reflected in the lack of posting, and that raises the question I posed last July (before the relapse) of “Where does the blog go from here?” However I’m not going to ask that (no point in tempting fate) as I am not out of the woods yet! However in the absence of medical news, I might just comment on things that are occupying me or of general interest! And of course, pictures of Olivia!

So onwards and upwards!

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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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