Peter’s Hospital Diary

I travelled home from my ‘weekend break’ last night, just in time to see the end of “Silent Witness”, then it was off to London this morning for my 16th PET scan! Nothing much to report on that - the routine was much the same as the last few! I had the usual starvation 6 hours before (which in reality meant nothing since bedtime last night) so by the time the scan had finished at 3 this afternoon, I was a bit peckish! Just the wait now for the results on Thursday. One interesting fact was that PET scans weigh in at about £1,000 a time… I wonder if I get a bulk discount? Still, I’m worth it… aren’t I..?! (And it probably pales into insignificance against all the other treatment costs)

Moving swiftly on, over the weekend I was looking back at the early Blog archives, particularly January and February, when I was in hospital. It all seems so long ago, and a bit dreamlike, with the 4 hourly observations, and the hospital routine. I did note that I remarked how hot the room was - I dread to think what it has been like in the last 6 weeks with the heat wave. Once again I was very touched by all your comments and the support you all gave me. Thank you.

So roll on Thursday for the PET scan results, check up and the lung function test!

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Nearly another week since I last posted, and I suppose that is an indication that life is returning to normal! There is less to post about as I start getting back into the routine of work, which although part time, imposes its own discipline!

I did mention last week that I had a hospital visit scheduled for last Thursday (t+27!), for a check up and lung function assessment. Well. it didn’t take place! I had a call from Linny earlier in the week, suggesting that we postpone until the PET scan results became available. so we postponed it until next Thursday, and Viki (my nurse specialist) sorted out that the lung function appointment for me, so my programme now is PET scan Monday, with the check up and scan results on Thursday - I’ll be trying not to bite my nails off!

I am enjoying being back at work, and although part time, the hours are slowly increasing. I am finding it fairly tiring, but I am building up my stamina for returning full time at the end of August. That has been confirmed now, so I have gainful employment for at least the next 2 years!

You may remember that I have been doing some work on training packages for Leukaemia Care. This project has been ongoing for over 12 months, but at last we were able to present 2 of the 4 modules in a ‘dress rehearsal’. This went well, but although there is still a little more work to refine them, it is good to see the project making progress!

And the weekend break? Well at the moment I am staying with my parents for the weekend, but I’ll be travelling home tomorrow - ready for the PET scan on Monday - so Onwards and Upwards!

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And as the title says, a busy couple of days it has been too! But first, I have my appointment for the next PET scan which is scheduled for Monday 31st. A bit nail biting, because although I hope the trend has continued, there is always that element of uncertainty…! Still, think positive!

Meanwhile on the social front, things have been good! Having got back to work, I discovered that two tickets for the Summer Ball had become available at short notice. Very short notice because the ball was on Friday night! So we duly dressed up and off we went. It was a lovely evening - held outdoors under a large marquee for the dinner and dancing, with the theme “Africa”. It seemed almost as hot and to add to the atmosphere, there were large models (probably 2/3 scale) of appropriate animals in the grounds, and other props to add to the tropical sense of occasion! I didn’t take a camera, but we did take a couple in the garden before we went. There were also some funfair rides, a beautiful steam driven carousel, and somewhat more modern dodgem cars! We had a lovely evening and arrived home at just before 3! I wouldn’t have been able to do that 3 months ago! The skies were darkening when we left and as we arrived home the heavens opened with a spectacular, but short lived, thunderstorm!

Yesterday was the dive club BBQ. I didn’t go on the dive (I need to pass a dive medical and I’m not ready for that yet - one step at a time!) but the BBQ was good. A traditional naval BBQ - a 45 gallon oil drum cut in half along the long axis and supported on an angle iron stand and a bit of galvanised mesh on top. It is perfect as it gives a good separation between the food and the charcoal surface.

So lots of little steps on the path to getting my life back!

Onwards and Upwards!

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Half a year since the transplant - and a week since I last posted - however it is indicative that I have been busy since I started back at work part time (and the hours are creeping up!)

Seriously, it is good to be back at work - I say work, but really it is an enjoyable past-time for which I get paid - but more importantly, it is an important psychological point on the road to “Getting my Life Back” - and in recognition of that I have started a new category with that title. (Not that makes much difference to how you read the blog - it is just an organisational thing). You may recall that my climbing that rock in Calpe was a similar point (which I posted here) after the previous transplant.

The sharp eyed among you may wonder what happened to the lung function test, which was to have taken place today. I have re-arranged it to coincide with my check up with Linny in the haemotology department next Thursday. As it happens, I had a phone call from the receptionist there, asking why I had missed my appointment today! A quick panic, but on closer investigation, the mistake was with reception, and the appointment is next Thursday! I hope that I will have the PET scan appointment by next week too.

Finally, as the result of a request (Richard), I have posted this photo of me, taken in May 2005, when I went to Ascension Island. For another look at Ascension, there is a webcam here.

So - Onwards and Upwards!

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Yes it really is a week since I last posted, and amazingly, 25 weeks since I had the transplant - 6 months ago!

Looking over the last few posts, I seem to be getting away from the original purpose, which was health updates! Certainly that is a sign that my health is improving and I feel that I am getting stronger each day. I suspect the GvHd is still rumbling on a bit, but my skin is generally much less itchy than it has been, and less ‘flaky’ and I am applying the steroid creams much more sparingly. I am still taking prophylactic anti-biotics while my new immune system builds its strength up. My sense of smell is still impaired, although that seems to be returning. I can smell something, but everything smells the same. (The scent of the flowers from the Palace gardens was completely lost to me). I imagine it is a little like being deaf or colour blind - I can sense sometthing, but the detail is missing.

There are two significant events on the hospital horizon: The first is a repeat lung function test, scheduled for next Thursday, although I may try to postpone that for a week to coincide with my next check up with Linny. The second will be my 16th PET scan, which will be in a couple of weeks although I haven’t yet had the appointment.

I seem to have come a long way in the last 6 months, and I can’t quite believe that it was so long ago! Your comments and support have made it pass very quickly! Thank you.

So what have I been up to in the last week? Well, after the server update I needed a day or so to tidy up a few loose ends, but that is complete. The acid test was to see if it all worked when the old software was un-installed - it did! I was in charge at home over the weekend (Felicity was away) and although the children were resigned to a diet of “something on toast” I surprised them with a full roast dinner with all the trimmings on Sunday!

However the highlight of the week was a visit to a tea party on Tuesday. Not just any old tea party, but a Garden Party at Buckingham Palace! This came about through a nomination from LeukaemiaCare (you may recall that I am a volunteer worker with them). We travelled up London on Tuesday morning, to our friends’ flat, changed and took a taxi to the Palace. We didn’t get to meet any of the Royal Party, but we had a lovely afternoon, taking tea and wandering round the grounds (with about 5,000 other guests!) before getting a taxi back to the flat. We finished off the day with dinner, and drove home yesterday. Photography is banned in the Palace grounds, so I’m afraid no pictures!

The final bit of news is that I am going back to work part time tomorrow! This is for a briefing on a small project, some of which I’ll be able to do from home, but it will ease me back into the discipline of going to work!

So that comes back to the question of “where does the blog go from here?” I think I’ll delay that decision until after the next PET scan result, or when I go back to work, but those events might prove to be natural breakpoints.

But until then… Onwards and Upwards!

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A bit of a short post today as I have had a busy couple of days. Those of you who have been visiting regularly will have noted that the server has been unavailable for a few lengthy periods while I have been doing software updates. I am delighted that most of the work is done, and although you wont see many changes on the site, it does allow for future upgrades.

In ‘geek speak’ the main requirement was to use a later version of PHP (the scripting language that the blog uses to present the contents of the database) but to do that meant changes to the Apache webserver that serves the PHP generated pages. This meant downloading the source code and compiling it for this system, but (at last!) the site is running the latest version of Apache (2.2) and a newer version of PHP (4.4.1).

There is still a bit of tidying up to do, but the basic system is working!

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And the weather did hold up for the weekend! Which was just as well as we had a “bit of a bash” on Saturday to celebrate various birthdays, continue research into the taste of various alocholic drinks, but basically to enjoy the sunshine and “chill out” after what has been a pretty eventful year so far!

The garden looked good and I think the guests all appeared to enjoy themselves! I certainly did, and again confirmed that Pimms does taste better when mixed with dry ginger rather than lemonade; and that lager and cider are both equally enjoyable on a hot day. Mark (fellow blogmaster) loaned us a sound system, and as the neighbours were all invited, there was no excuse not to use it fully!

Sunday was equally enjoyable (after the inevitable clearing up and taking a load of empties to the tip) with more hot weather and another BBQ, so all in all it was a very good weekend! We also have another ‘exotic’ plant to look after - a bourgainvillea! Thank you Mark, Sue, Dot, Mike, Peter and Lin!

Oh yes - we spent a quiet hour yesterday picking over 5 pounds of blackcurrants… but all the time I could feel beady little eyes watching me from the trees!

I have skipped a day in my enthusiasm, but on Friday I went to see the equivalent of my GP (my work medical services) who have said that August looks a good for starting back in my next job. All I need is a medical certificate to say I am fit so that looks as if it is getting under way (and I have been spending some time on the ‘phone this morning making sure that is happening!)

So - as I believe someone once said… “Onwards and Upwards!”

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