Peter’s Hospital Diary

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 Im 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)

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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 Marian (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!

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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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Sorry I didn’t get to update this yesterday - I arrived home - slapped on some steroid cream and went to bed!

So yesterday… Yet another interesting day starting with a visit to my old friends at the day unit in St Thomas’s - where all this started nearly 7 years ago! (May 1999 was the original date of diagnosis) They took some blood (after all, what sort of hospital visit would it be without a blood sample?!) before I headed off down to the radiology department to discuss the proposed treatment.

The aim of the radiotherapy will be to shrink the mass of remaining disease in front of my spine. The radiotherapy it isn’t a foregone conclusion, as it will depend on the results of the next PET scan. The cautious/pessimistic/don’t-get-his-hopes-up view is that I probably will need it unless “we get a nice surprise”! However as I love surprises, I am looking forward to good news after the PET scan - although bearing in mind the words of my late grandmother “Prepare for the worst and hope for the best”! Wise words if ever there were any.

So to get back to the plan… After the next PET scan, the radiologist will assess the size of any remaining mass (that optimism creeping in again!) and calculate how to give the required dose without damaging any of the nearby organs (liver, kidneys, spinal cord etc) There will be about 17 treatement altogether, each one lasting 10 minutes, and given on successive (working) days. (Sorry - just had to go and chase a rabbit off the delphiniums in the garden) That may make blogging a bit tricky (if it happens) - but I’ll try and sort something! In preparation I will be going up for a precision CT scan and get a couple of tattoos (alignment marks!) in preparation.

After the appointment with the radiologist, I went back up the clinic to see my consultant about the skin rash. It definitely is GvHd (not that there was much doubt, but it could have been an allergy to one of the antibiotics) so as soon as I had finished I slapped on a bit of steroid ointment and then caught the train home.

I felt pretty rough when I got back - partly because the itching has stopped me sleeping at night, so after slapping on a bit more cream all over, I went to bed.

Last night was a bit restless too - I foolishly looked in the mirror at about 3 am - my face was crimson, eyelids puffed up, but this morning it had all subsided a little - and more cream has been slapped on! The hope is that the topical steroids will not only treat the immediate skin condition, but also be absorbed sufficiently to treat the GvHd systemically and stop it getting out of control. If not, then there will be a re-assessment next week (if I have any skin left by then!)

So - onwards and upwards! Now to go and see about a rabbit-proof fence round the flowerbeds - and I see that Orinoccho, a ‘tame’ pheasant that drops in from time to time has just landed… and a jay is busy attacking its reflection in the shed window - it’s all hapening here!

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Suffering a bit at the moment - I am covered in what looks like a nettle rash, and major sniffles. I’m not sure if the sniffles are a cold, or anything to do with the rash, whch I hope is GvHd (The alternative would be an allergy to one of the anti-biotics I am taking). I did ring Guy’s this morning for some advice - their opinion is that it is GvHd, but as I am going to visit the haematology department after seeing the radio-therapist tomorrow, they are happy to wait until then! However I suspect I will be coating myself with topical steroids tomorrow evening!

Ah well, no-one said this would be easy! Anyone got a back scratcher???

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