Peter’s Hospital Diary

And it’s a drizzly overcast day here! I’m also reminded by Richard that it is Shakespeare’s birthday too.

Feeling a bit rough today – since stopping the steroids on Thursday, the GvHd seems to be kicking back in – probably a good thing, but a bit uncomfortable. I have a mental image of sword fights between the various cells battling it out – with the GvHd as evidence that the incoming immune system is fighting valiantly!

On a more mundane level, my skin is itchy again (out with the steroid creams) and I feel lethargic – still, no pain no gain!

Onwards and upwards!

Tags: GvHd

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It’s a lovely warm sunny day today – it did start overcast, but the sun has broken through at last!

I had a good day yesterday – I ventured out for a pub lunch with Mark and enjoyed a pint which almost tasted like a pint should! However I felt a little off colour this morning, some of the minor sysmptoms of the GvHd that I had before, itchiness, runny nose etc, so whether that is a resulkt of my body adjusting to the stopping of the steroids I’m not sure. Maybe it’s hay fever that I have acquired from the donor!

However I am feeling better as the day goes on, so time to stop sitting in front of the server and go and enjoy the sun! And I’ve just heard the first cuckoo of spring!

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Not really much to report – apart from a dreary rainy day! (Although it does look as if it is brightening up a bit now)

I took the last of the oral steroids this morning – they seem to have done the trick in damping down the GvHd (just hope not too much!) and I feel a lot better. I even managed to get the contact lenses in this morning! My sense of taste seems to be getting back together too, although Pimms, wine and anything with dry ginger in it still tastes odd!

My hands are still sore, although the DiproBase moisturiser is really effective, and I hope that they will improve over the next week, before the next check up next Thursday!

Meanwhile I have been busy – I went an inspected a prospective car for middle daughter this morning, which she should collect next week, and then painted the internal wall in the conservatory – so I’m feeling very virtuous!

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Well if the PET scan facility was an airline, I think I’d be a gold card holder – the general consensus seems to be that I am close to the record holder for PET scans at St Thomas’s!

As PET scans go, it was pretty routine, the details are in the side links and other posts. However the time under the scanner seemed to go pretty quickly – possibly because I fell asleep! The hard part will be the waiting for the results, as this gives the second point on the graph… how well is the incomimg immune system valiantly fighting the lymphoma? (as well as me with the GvHd!)

And the GvHd does seem to be calming down a little under the influence of the steroids. My skin is less red and itchy, although my palms are peeling now – unpleasant as the skin on ones palms tends to be a bit thicker, and they feel very vulnerable as the skin flakes off. Still, plastering on some heavy duty moisturiser and the betnovate seems to be helping! I just need my sense of taste to return to normal – everything tastes either very bland, bitter or dry!

It was a lovely sunny day here yesterday – the conservatory is drying out, a choice has been made for the tiles, and we might have a decision on furniture. It was sunny this morning when I left – temperature rising, but decidedly cool and cloudy when I returned home. Still, the bit of warmth has brought the garden on nicely and it is looking very green!

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Happy Easter!

The steroids seem to be doing their stuff – my face has been a lot less puffy, and the Piriton continues to help relieve the itching and ensure a good night’s sleep! However I have now lost the remnants of last year’s sun tan!

My sense of taste is still out of sorts – which not only affects the taste of chocolate, but also Pimms and white wine, so the sooner that comes back into line the better!

The promised hot weather hasn’t yet materialised, although as I write this the sun is trying to break through – in advance of some dark looking clouds on the horizon. Maybe tomorrow will see an improvement – on all fronts!

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Another check up yesterday – and I needed it! The palms of my hands were a livid purple yesterday morning, prompting the response from Linny (consultant) “Yes, that’s definitely GvHd!” She then went on to prescribe another small pharmacy including large tubes of the topical steroids, some oral steroids, and some Piriton (an anti-histamine, familiar to anyone who suffers from hay fever!) for me to take home.

I then went to have a lung function test. This is to check that I haven’t sustained any lung damage as a result of the treatment, but one of the tests showed a 20% decrease in lung function, probably a temporary effect because of the GvHd, but we will repeat the test in a couple of weeks just to make sure. Meanwhile I have my next PET scan (the 14th!) booked for next Tuesday, the 18th.

It was a bit to late to take the oral steroids when I got home as they should be taken first thing in the morning, but it certainly wasn’t too late to plaster on the creams! I went to bed early, and took one of the anti-histaminers. Well, it does say that they may cause drowsiness, but I had what must be the best night’s sleep since I came out of hospital! No itching and out like a light! Wonderful!

Enough of the medical stuff – “What about the conservatory?” I hear you say! It is now finished. Simon (the builder) has just completed the last bit of cleaning and sealing, and I have just finished wiring in the sockets. (No anti-histamines before doing that!) The floor still needs to be tiled, but we want the concrete slab to thoroughly dry out before doing that – about 6 weeks. (Which might just be long enough to decide on which tiles to have!)

So – in all its glory…

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A fine and sunny start to the day (albeit with a cool breeze). I’m not feeling quite as good as yesterday, partly because as the day got colder and wetter, my nose got runnier and my face sorer! I still itch all over, althgough some of the redness of my skin seems to be lessening.

Not so much visible progress on the conservatory, more sealing and fitting the flashing over the join to the house. However at the end of the day the side walls were glazed – pity about the roof, but the glass for that should be here tomorrow. No photos today – too wet and cold to go out into the garden! (Just looked out – it is really wet and windy – time to put the heating on!)

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Feeling a lot better today, although my palms are quite sore, as are the soles of my feet. I am still a bit itchy but it doesn’t seem quite as bad as it was. My face is still a bit sore (shaving was a little unpleasant!) but the swelling of my lips and eyelids has definitely subsided – a bit less like elephant man!

But I’m sure the burning question will be “How is the conservatory?” 🙂

Work started first thing this morning and is still in progress as I write (I can jusrt see the corner of it from my study window) A lot seems to have happened very quickly – the first stage was putting up the side walls

which seemed to take no time at all. After that came the building of the roof structure – just like a big Meccano kit (for those who remember Meccano!)

Once the framework for this was completed, it was bolted onto the side walls, giving the basic building outline.

The rest of today is being spent adding liners to glazing bars and sealing joints, and adding the fixings for the internal fittings etc. The glazing panels should be arriving tomorrow, although they may not be fitted until Wednesday, when it should be completed (apart from finishing the floor which can’t happen until everything has dried out in about a month or two)

Tags: GvHd

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Mixed day today – I woke up feeling pretty grim, the blisters and iching on my face had subsided a bit, although my face was still puffy, and the bright crimson effect and little blisters had spread to my legs – and I still itch everywhere else! I felt very thirsty too.

However there were some things to do – some of you may remember that the April 10th is Conservatory Day, so this was the last weekend to do any final preparation. So the morning’s task was to look to see where the power cables for things like sockets and heating could be tapped into the main house ring main, and then cut the various channel and holes for them.

The main work of cutting the channels was done by son-in-law, Tom, (thank you!) but took about three hours. I wasn’t much use apart from helping feed the cables through and sweep up afterwards, but we eventually got the job done.

I felt pretty wiped out after that, and had a rest (any excuse for a snooze!) before a visit from Marion (who has the flat in London we have borrowed) and we enjoyed the first Pimms of the season!

I still feel very itchy this evening – my skin is very dry, and I suspect that internal mucous membranes and skin is affected in the same way as external skin – only there is nothing I can do about that! (And that is probably way too much information!) Perhaps it will be improving by next Thursday’s visit – or more medication may be prescribed. If nothing else I’ll need some more steroid cream! Still, crimson is supposed to be the in colour – and at first glance it just looks as if I have overdone it in the sun!

So at the risk of becoming a conservatory bore (“too late” – did I hear from the back row?) the construction is the next big event. Ill post the odd photo if there is demand!

Finally I have put up a link to friend Gabor’s podcast site Electrical Language. We refer to Gabor as “Hampshire’s answer to John Peel”. He delights in searching out unusual and often unpublished bands, and records his views and sample on his podcast. If you are interested, try the link! It may not be to your taste, but give it a go!

Tags: GvHd

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Forget to mention that yesterday was 77 days post transplant – time flies!

Feeling a bit better this morning – the topical steroids are working, although how much is being absorbed and dampening down the GvHd systemically remains unknown, and of course it doesn’t want to be dampened too much to inhibit the wanted Graft V Lymphoma effect! Bizarrely it is now the palms of my hands that are really itchy – usually that is the first sympton, and one might expect it not to show there as it is my palms that massage in the cream! Oh well, to be different!

Other than that, all is quiet. The weather is typically April – the sun was shining this morning, before a really heavy downpour, and is now back out again.

The bird feeder had to be moved (5 feet) to thwart a squirrel (Richard’s idea of lead seems good) but seems to have confused the jay, which has given up the quest for food at the moment and is back attacking its reflection in the shed window.

The post brought an appointment for a lung function test next Thursday, the same day as the outpatient clinic, so it will be nice to know if I am still breathing or not! Seriously, that is a particularly important test for me, as proof that my lung function is not impaired will go towards getting my diving medical back – and there is that diving expedition to Cyprus in October to look forward to! (Have to get down to gym before then and build up some muscles again)

Time to plaster on some more cream!

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