Sorry for my lack of posting for the last week. The old adage 'no news is good news' has applied, luckily. After getting discharged from hospital following the bronchoscopy I started the higher dose of steroids last Thursday. On Friday I suddenly felt a lot better and more human, and the feeling continued through the weekend and Monday. I had been sneezing a bit, and had a runny nose, and that stopped too.
Yesterday I felt rather more nauseated and the nose started playing up a bit. Today I feel much the same - better than before but slightly more fragile and tired. Partly, probably, due to a poor night's sleep last night. Maybe I'm getting a series of mild colds - it's very hard to tell what is really going on. Sometimes I feel completely time-shifted so I am totally asleep in the middle of the day (I've just awoken from an hour's nap), and then awake and restless when I go to bed at night.
The general message, though, is one of improvement and a feeling of normality slowly returning. I was even well enough on Monday to go with my Dad to Duxford air museum, where he's doing some work as a volunteer helping to maintain a large old flying boat called Catalina. He can get in free, so we had a look around the largely empty exhibits (a cold, rainy and windy Monday mid-morning is not peak time...) and had a nice boy/dad time discussing the technical matters of flight, different planes and the importance of a high bypass ratio for efficiency in jet engines...
Today I had a standard clinic appointment. Jas was away so I saw Little Mo, whose name I find out is Mahmoud. He seemed happy I was feeling ok and said the fluid is still on the bottom of both lungs (the remainder of that which he drained a few weeks ago) but I shouldn't be worried about as it is doing no harm. He showed me the area of white clouding on the X-ray and how he thought it had improved marginally since the last X-ray a week ago. I asked him to estimate the volume and he reckoned half to 1 litre of fluid (!) but still insisted it was best not to try and drain it. If you stick a needle in the risk of infection and turning it all to puss, or puncturing a lung, is too high to make it worth it. It shouldn't affect my ability to breathe in and he hopes it will dissipate over time.
I am to start tapering off the steroids back to 15mg after 10 days, so on Sunday I'll reduce to 25mg, Monday 20mg etc. and then on Tuesday next week go back for clinic and the follow-up bronch in the afternoon, with another overnight stay.
Vicky is doing more work, which is stressing her out a bit - that's work for you I guess. She's been working from home in the mornings and going to the office most afternoons. I fill my time with piano practice (Rachmaninov prelude in D major is my current thing. It is brilliant. Also my friend Sarah sent me a Mozart piano concerto with the orchestral accompaniment on CD which is hilarious fun - mostly because I can't hope to keep up with the orchestra as the thing whips by at such blistering pace and it is all right-hand passagework semiquavers for pages!), and watching box set DVDs on telly which several friends have been kind enought to gift/lend to me. There's always the Wii and PS2 to keep me busy too, as well, of course, as the odd bit of exercise here and there!
I have been meaning to post my experience of the call, the pre-op stuff, and waking up in intensive care - partly as it is a gap in the blog record and partly to document it for myself before I entirely forget what it was like. I did scribble a few notes in the early weeks in hospital to help remind myself, so I'll do it when I have the energy to revisit that rather traumatic time. 'Till then, keep well and warm everyone and don't get too stressed about the Christmas shopping...
5 months ago