Friday, December 11, 2009

Waiting for Guinness

There's a local indie duo called Waiting for Guinness which plays pubs around Newtown and the innercity. They have a rough, thrown-together sound, fresh and rocky, which I quite like. But it's their name I like more. When you order a Guinness, you know there'll be a time while the drink is 2/3rds poured, when all you can do is wait for the thick, foamy, capuccino-like head to form, before the bar staff top it up with the last third, & you can take your first suck of the glorious brown stuff.

I thought I was waiting for Guinness in terms of not getting to see the TCM herbal doctor until just a few days before Christmas, but it seems this pint of Guinness has more ingredients than that.

I had a blood test today and then saw my haematologist, and the news is not as good as I'd hoped. Instead of my thrombocyte count increasing, or at least levelling off, it's started dropping. I've lost 50 points, from 169,000 three weeks ago to just 119,000 today. I'm still within the safety zone - just - but I can't afford to slip any further. As a result, the professor only reduced my steroids by 5mg to 25mg/day, instead of to 20, as he'd hinted, & I have to go back for another test the day before I see the TCM practitioner.

If my thrombocytes are still dropping, I might have to have another stay in the RPA to get more IV immunoglobulin pumped into me.

Meanwhile, the side-effects of the still high-doses of prednisolone continue to accumulate, with each day finding me slightly more of an invalid than the day before.

A typical 24 hours on steroids

Wake at dawn (approx 5.40 am), thanks to an east-facing window over my bed
Bath or shower, feeling moderately OK. Consider going for a walk or a swim. (Some days I actually achieve this!)
Make breakfast, eat, take my steroid dose and the first of my two calcium & Vitamin D supplements.
7.30: Sit on my balcony among my herbs and wait for the reaction, which starts less than 15 minutes after the medication: heart pounding, shakiness, energy drops right away, eyes blur.
Doze until 8.30 or 9.00 when the energy levels start to rise a little.

This time resting among the bright green of my herbs and listening to the magpies carolling in the street trees is a gentle joy, which I know is doing unmeasured good. There is clinical evidence for the benefits of enjoying nature.

9.00: Wash up - this task of one day's dishes of one person can take at least an hour. Use bathroom, make bed.
Mid-morning: check emails, attempt to read online media, blogs, etc. Reading on the computer is easier than on the page, as I can pump the screen font up really big to compensate for sore, blurry eyes.

COFFEE! the high point of the morning!

After the saving draught of strong coffee, my brain finally feels like it has woken up, and I can plan what I'm going to attempt for the day. Either go for a short walk or settle to read all the online research I can find on today's writing topic.
Lunch: salad with some protein & two slices of bread. Fruit or yoghurt.
2.30pm: Feeling almost normal, and able to work at only about one-third my normal speed, I manage to put in maybe three hours writing web articles or blogging.
5.30-7pm: Make dinner, a proper cooked meal with lots of steamed vegs and egg, meat or fish. Take 2nd calcium & Vitamin D Supplement.
7-10pm: Television; with a hot drink midway and a Nexium tablet to counteract the sharp stabbing pain in the hiatus hernia which the steroids cause at night.
10-10.30pm: Bed.
1am, or if I'm lucky, 2am: Wake up, pain in chest, heart pounding, brain spinning. Mad thoughts - lists of things to do, blogs to write, jobs to do around the apartment. Nothing for it but to sit up & read, my eyes having rested enough that they sort of focus. Read for one or two hours, concentrating carefully on the story until the brain stops spinning, and the heart and chest settle down. Go back to sleep.
5.40 am: Wake up with the dawn & start all over again.

The Guinness ads in the the old Punch magazines from the 1960s used to say "My Guinness - My Goodness!" and "Guinness is Good for You!" How tempting! Maybe I'll drop off the wagon and try a Guinness tomorrow.

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