Much to my delight the results from the National Amyloidosis Centre are really positive this time. The amount of amyloids in my spleen has decreased dramatically. I assume this is down to the thalidomide but it could of course be god’s will. If it is, he surely needs to go back and check his balance sheet again. He really does not owe me. This is actually the first time that my amyloid results have improved since getting diagnosed. The consultant says it’s a very positive result. The light chain numbers continue to increase slowly but she says they may stabilise at a low enough number. Either way, for now, no one appears to be recommending any extra treatment so hopefully I shall be my full on, vibrant self for the wedding. We will be celebrating tonight by sitting in the loggia with a large glass of expensive Italian water mixed with expensive fruit something called Juicy Water (ooh it’s refreshing) with our three cats gleefully fighting and weeing twix Maria’s Mediterranean plant collection.
The visit to the NAC was a bit of a nail biter this time just because I had got in my head to be worried. I had no medical reason so to do but I did not want to the sort of negative news that would mean more treatment and thus feeling ill at the wedding. Our delightful new family (the extended part) have only seen me at my least well and least sociable, probably leaving the impression of a surly, sulky, boring git they hope not to be lumbered sitting with during the ceremony. I really wanted to be able to show off my life-and-soul of the party, proud father, performance in August and not the revival of the slightly bilious, vertigo ridden, grey faced misery of my last showing. Fingers crossed my other consultant does not recommend gilding the lily. For goodness sake I am well enough let’s not go for gold plated well.
When I get anxious I talk, lots. So during the tests I had a great time sharing jokes with an extremely heavily accented nurse. He started off very circumspect but as I responded with clear glee he became more and more confident and outrageous. His intonation communicated the moments when I should laugh and I dutifully did. By the end I really had no idea where we had arrived. I know we started at how hilarious it would be to get patients to race each other up and down the corridor but I believe we ended, I may be wrong, with something quite surreal about Hoxton. Anyway when he tested my blood pressure it had shot up I did not have the heart to say it could have been as a result of my efforts to hang on to his joke. What a great and positive asset to the NHS he is though. I hope I get him next time.
I also talked at length to another nurse about box sets. It was prompted by her American accent which she said was a result of watching too much TV. She was a big fan of House of Cards. We chatted over this while she greased my nipples and probed me with a gadget that takes photographs of my heart. I am sure my preoccupation with waxing lyrical about Kevin Spacey’s to-camera moments helped produce the really good heart results reported by my consultant.
My third encounter was with my regular Romanian nurse who deals with the radio active stuff. She and I have quite a thing going about the Romanian education system something I know something about having had a Romanian friend and colleague at the university. She is deeply unimpressed by our education system – she could take little comfort from me, as all I could do was agree it was crap.
My radiographer was Australian and she had only just arrived. I apologised for the state of the country. She thought I meant the hot weather, she said it was much too hot. Is there a cold part of Australia cos she must have come from it?
This time my consultant was my favourite one with the most wonderful bedside manner. Totally charming. Her parents are Indian. Needless we had lots to talk about regarding weddings. Hers was very small scale, only 150 so she was very impressed with our forthcoming one and wants to see photographs. Her mum had wanted to bring back loads of turmeric from India. She had heard about the recently discovered miracle cure for myeloma ( the other thing I have) using the essence of turmeric (forgotten what it is called again) but her face betrayed scepticism when I showed her my £50 bottle of snake oil brought from Amazon. Still I keep popping it even if it does turn your wee orange.
Anyway – that’s over till February. Both of us get stressed but when we get good news it is worth the stress – and looking back at the whole event, in a sunny lovely part of London, it feels a bit like we have just been on holiday.
I started writing this on the train. Now we are home and yes three cats gathered, yes I have my drink and so far at least no weeing or fighting – the cats I mean.