Just marking the place.
FL had his regular monthly hospital appointment today. We got the assertive lady consultant who whisked through the usual questions and got the usual answers: basically everything is "fine". And that is a good thing.
However, I decided that the Dexamethazone situation deserved a mention. To remind you: he takes 20 x 4mg of dexamethazone every Wednesday and turns into a speed-demon for the next 36 hours or so, then crashes, hideously, in an exhausted grumpy heap for another 48 hours. The energy boost phase has provided him with an opportunity for through-the-night writing sessions, which he rather enjoys, but it is tempered with mood swings and irrationality and the crash is not fun to witness, let alone experience. There is an excellent blog post on the topic here. I particularly like the warning:
"Do not, do not, do not, antagonize, counter, argue, with your patient while they are on Dex. Use that day to go out with your friends or run errands. Lay low. If a situation occurs, consider it a marriage encounter drill where one spouse gets to ream you out and you can’t flinch or say anything back. You have to present a calm, confident, caring expression of total understanding, beg for forgiveness for whatever crime you have been accused of committing."
My most recent crime was to open a box of tin foil from the wrong end. You have no idea how angry a normally calm and loving person can become when faced with such abuse of packaging on dexy day.
I asked the Consultant if it would OK for FL to take his dexies at night instead of in the morning, so that his energy peaks during the day instead of at 3am. She thought it was an interesting question but said she would strongly advise against it, as the body produces natural steroids which peak in the morning and drop off at night. She felt that to disrupt that rhythm by boosting him at the wrong point in his natural cycle would be a mistake. Her "solution" was to offer a sleeping pill for the nights when he is too high to sleep. Add another chemical to the mix? No thanks!
So we continue with the current regime until further notice. She reminded us that if his myeloma starts to rise again, he will be taken off Revlimid. His blood was sent to Birmingham today for a Freelite test to check his "numbers". Results in 4 weeks.