Peter’s Hospital Diary

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!

Tags: GvHd