FL was back at the hospital today for his regular appointment.
You may remember that we were last seen on Christmas Eve, and FL's dose of Revlimid was cut to 10mg without a clear explanation. Given that it was a holiday and we were keen to get home to the kids, we just accepted what we were given.
Today we saw the Consultant. She was very brisk and positive. I try not to read between the lines because she knows that we like to know the facts up front, so I am going to take her attitude as reassurance that all is basically well until we are told otherwise. She noted that the Revlimid dosage had been reduced from "25mg to 10mg on the last occasion". I queried that, as I had previously noted on the blog that he had been on 20mg. The consultant said that they never prescribe 20... it would always be 25 or 10. Really? I managed not to argue, but this was confusing to me. Sometimes I wonder if I am losing the plot altogether.
So OK, he is now on 10mg because his kidney function "is borderline". This was said in such an upbeat tone, that we accepted her words. But now I am sitting here wondering "borderline what?" Borderline not functioning? Or "just" at a level which sets him outside the limits for a full-dose drug protocol? There is no further reduction possible on this regime - it is 25mg, 10mg or nothing at all.
So... yes, here we are. Another month of just getting on with the day-to-day and trying not to worry about what may or may not be happening inside his body. His blood was taken today and sent to Birmingham, so at least next month we will know if the reduced dose is still keeping his Myeloma at bay. If not, they will take him off the Revlimid altogether. And at the moment I don't think there is another plan.
We are back at the hospital on 19 February and off to Skye for a week in March. He made me book a holiday as soon as we knew his dose had been reduced.
How is he? Tired. Tired and often grumpy. Forgetful, clumsy, often light-headed. Yesterday, he drove a mile in the snow with the hand-brake on. His hearing is deteriorating fast and one hearing aid is lost (probably scooped into the recycling bin with the old newspapers!). He gave in and had his eyes tested, so now has one pair for driving and one for reading. But all of that is pretty much straightforward "old age".
He has a great surge of insane energy on Dexy day, when he is up all night scheming and clattering and cannot be reasoned with... followed by a two-day crash when he sleeps and sleeps. But we are used to it now. And we are used to the coughing-himself-awake, the sudden spasm of an "electric shock", the cramps in his feet, and the ease with which he bleeds when he tries to put his hand in his pocket.
None of this is what either of us would have planned, but it's the way things are. It is basically fine. WE are fine. We still have fun together. We still love each other. There is just less energy to go around. He is MUCH happier when he gives in and goes to bed at 8pm, instead of struggling to stay awake to keep me company. And I know to just pick up my knitting or a book and settle down on my own for the evening and not worry. It helps to accept that this is the New Normal, for now at least.