Peter’s Hospital Diary

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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It seemed a long way to go for a 20 minute consultation, but then its always a pleasure to see Linny! Progress seems to be continuing, and the creatinin level from my last visit was 123, still slightly above the upper ‘normal’ limit, but much lower than it has been! The next check up is in 4 weeks, which will roughly coincide with the next PET scan. There was a bit of tooth sucking when I discussed getting dive fit again, but the suggestion that I might go back to work in August passed without (too much) comment!

The next check up will include some additional blood tests – one for chimerism, to test the ratio of donor cells to mine (it was 100% last time, so I’m not quite sure why that is being re-done – I must ask) and a CD4 cell count. CD4 cells are a particular type of lymphocyte characterised by a type of protein on their suface, and have an important role to play in fighting infections. There is more information here.

So I got back home failrly early to find that the conservatory is now tiled and grouted! I am very pleased with the final result, there is some furniture on order, but that won’t arrive until August.

The hot weather is back again today, the tomatoes and cucumbers were wilting a bit, but they perked up with some water, and the lemon tree (bush) looks as if it is having another growth spurt. Perhaps it objects to being called a bush!

So lets hope the weather holds up for the weekend!

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I have just realised that it has been a week since I last posted which I think is probably the longest interval since I started the blog back in early January, leading me to wonder how much longer the blog will serve any useful purpose!

However, it has been a busy week with lots of visitors at the weekend helping us celebrate Felicity’s birthday (yesterday). Both sets of parents were here, plus various cousins etc, so we were glad the weather held up for a couple of BBQs! Not so on Monday when we had very heavy rain, but then the garden needed it! Yesterday and today are somewhat drier!

The conservatory tiling is being completed this week, not without little dramas on the way! You may recall that I am putting in underfloor heating and I ordered the matting some weeks ago. However, I ordered it by the total area, forgetting that it arrives in a 500mm width, and as the conservatory dimensions are not multiples of 500mm, I ended up with too much! It can’t be cut, so I had to order a shorter length. Anyone who needs 4 square meteres of underfloor heating mat Screwfix part number 34893, please let me know! (I have a spare thermostat too). The tiler then discovered we needed some additional self levelling compound, and I have just been to get some more tile cement and another box of tiles! It should grouted and finished tomorrow, although I won’t be here for that!

And the reason that I won’t be here is that it is three weeks since I last saw the lovely Linny, and it is time for another check up! The next PET scan (number 15!) has been ordered, and although I haven’t had the appointment yet I expect it to be in about 4 weeks’ time. I will post the results from tomorrow (the blood tests) when I get back.

Please don’t forget to look at Elspeth’s and John’s blogs. Elspeth has just started her treatment and John has some challenging developments that he describes in his latest posts! John – fingers crossed – Onwards and Upwards!

Now I have a bit of plumbing to do, before I go and tend the crops!

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A brief post this morning, really to draw your attention to a new blog – Elspeth’s Blog, which you can access from the links under the blog roll. I won’t say to much here as Elspeth’s blog will speak for itself, but many of you will know that Elspeth has commented on my blog and been a supporter during my cancer journey. She is a fellow volunteer for Leukaemia Care. Please visit her blog and give her the support and encoragement that she will need. Onwards and upwards Elspeth!

On a completely unrelated note, the CD trick seems to be working and the blackcurrants have so far survived – so thanks to AOL, Freeserve etc that used to send out those free CD’s ad nauseam – and what a good job I didn’t throw them all away! (I should also mention – thanks Mum – that you hang them up from string – not try to play them! – although having listened to some of youngest daughter’s music…)

Also on the horticultural front, the lemon tree (bush?) now has some embryonic lemons on it, and looks poised for another growth spurt! I must go and water the cucumbers and tomatoes which are also starting to bear fruit!

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Seems a while since Iast posted, although I see Thursday’s post generated a relatively large number of comments!

It was a busy weekend – we went down to Cornwall for a family wedding (on Felicity’s side of the family). The wedding itself was held in the tiny village of St Winnow, near Lostwithiel, and by coincidence very near my Uncle, ho lives in the next major village down at Lerryn.

The weather on the Friday for the drive down and the Saturday for the wedding was excellent – really hot, and the reception and wedding breakfast were in a marquee with views down over the upper reaches of the River Fowey. We had a good day, and drove back on Sunday to get back in the early evening.

I was going to post something yesterday, but by the time the photographs had been sorted, processed and posted on the family web site, and the washing and ironing done… well you know how it is! However the weekend confirmed that although my taste for champagne has returned, it was a bit of a shock to find myself out of breath after only 5 minutes on the bouncy castle…

I have suffered a little bit with the skin – my own fault as I didn’t take all the creams etc (so many decisions, do you put the steroids on before the moisturiser and the sun block, or should the sun block go on first…) but I did keep out of the sun as much as possible and when I couldn’t avoid it I used plenty of factor 25. Things have improved since I got back with loads of the Diprobase and Dermovate!

Changing the subject, I have just discovered a load of old AOL CD’s, so I must go and string them up over the beans and the soft fruit. The birds may have had all the cherries off the cherry tree, but they won’t get (any more of) the blackcurrants!

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Twenty-one today! (21 weeks since the transplant that is…) I can’t quite believe it – it seems such a long time ago!

My skin is still itchy – and bizarrely my forearms are really red and blotchy – not all the time, but occasionally – it looks like exzema, but I think it is caused by pressure when I lean on things such as the laptop when I lean round it to get at the mouse for the linux computer that hosts this blog – too much information – but I really must sort my desktop out! (The mouse is behind the laptop – the screen on the left is for the linux computer hosting this.) However to return to the topic, other than the itches and blotches, I am feeling pretty good!

The weather is hot again here, after a rather cold and miserable day yesterday – which meant we had to abandon a BBQ for Kt’s birthday. However we had dinner indoors with a little celebration for her.

Right – off to view the garden and chase the rabbits off the runner beans!

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