Hi there Myeloma fans!
This is your regular Haematology update post.
The news is: there is NO news, and that's GOOD news. FL's Light Chains are "slightly improved" (no numbers offered and I wasn't feeling confrontational) and all his other numbers are "stable". He is now on his 14th course of Revlimid (Lenalidomide), if you are counting.
And how is he? Well... I know he was preparing himself for bad news today, because he is feeling very very tired. But this is probably because he is in a bit of a vicious cycle of sleepless nights and sleepful days. He just can't seem to get into a "normal" routine after his Wednesday mega-dose of Dexamethazone. In some ways it is good, because each night he makes great progress on his book, without any interruptions. But during the day, all he wants to do is sleep, which is not terribly convenient when the dog wants a walk / his wife wants him to eat meals / he wants to go to golf.
He has got into a routine of waking around 3.30pm, and heading off to town for a coffee / beer with his pals, passing The Girl's school bus on the way. So she gets home to an empty house, which perhaps she doesn't mind, and a whining cross-legged dog which she definitely does mind. FL tries to be back by 6pm, just as I arrive home from work. He then falls asleep and doesn't want to be wakened for dinner, but I usually insist. A dog-walk at 8pm, then more sleep. At 10pm I wake him up to go to bed (!) but it usually takes him an hour or two to make it through the house, distracted by the news on tv, his book, late-night snacks, another sleep at the table. If he has not appeared by midnight I get up and frog-march him to bed. He is up again by 1am, for at least an hour, then 4am for at least two hours. I am up at 7am. Another day begins. He is asleep again by 9am.
The truth? It is a rather lonely existence for both of us, particularly at the weekend, when I am at home to witness the 9am to 3.30pm sleeping marathon. So I have been making the effort to get out a bit more, or to just get on with my sewing / knitting / cleaning instead of waiting for him to wake up before I make a noise. He can sleep through most things, I have discovered. There are benefits to deafness!
But we both know we have nothing to complain about. He isn't in any great pain from his cancer. He is still alive, for goodness' sake! And although he would prefer to be awake more, he makes the most of his erratic waking hours doing things that matter to him: reading, writing, absorbing world events. "Russia Today" provides him with through-the-night news from a different perspective.
The only problem is his jaw. After his hospital-based tooth extraction, he was on antibiotics for two weeks, and he thinks his mouth is healing, but it seems to be very slow. I have to remind him to use his mouthwash. He went for a CT Scan last week, to find out whether the blackness on his x-ray is a normal sinus cavity ... or something else. I have noticed a change in the shape of his cheekbones, but maybe I am just looking for trouble. You know how it is? You start to imagine things that aren't there. He is back at the Maxillofacial Clinic on Monday next week for the results. I will be there.