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.
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11 comments:
I'm very glad that things are stable and despite the erratic sleeps it's great that FL has things to do, places to go and people to meet! Hope all goes well next week.
No news for good news works. Good luck with the CT scan results. And hanging on to whatever quality of life he---both of you---can is as important as anything else.
My in-laws' extended family is going through some pretty major crises at the moment (including the big C) so it's somewhat comforting to see that life does go on, even with all the curveballs...
all the best Roobeedoo family - it sounds like you are all doing a great job at living life despite hurdles. Good on you all!
Sounds like having a toddler in the house, with days and nights switched while you still have to navigate the "normal" world! Glad FL feels well enough to potter about a bit. Hope that you and he will be awake at the same time some time in the near future.
So good that there were no nasty surprises. It's interesting to hear about your household schedule. I always think that we have the same schedule, but in fact actually it keeps subtly evolving and changing.
Sympathy for the crazy sleeping waking schedule.
I am there in a different way. Often, I only see my husband to talk to on Friday night and Saturday morning and Sunday night.
Yes, he comes home from work after 6ish but he has to watch the news and snack- no use in trying to talk He wants to see or hear the news. So I am in the kitchen cooking and listening to music or an audio book, he is in the living room. He may go and take a nap before dinner or he may watch more TV. Most evenings after dinner he watches more tv or goes to bed or may do work on the computer- work or bills. Then to bed.
On Friday nights, Sunday night, we may watch together. Sometimes Thursday or Saturday night. I'm not much for television, especially on in the dark. With lights on I can multitask..
The weekend he is usually gardening or working on another house we own and rent. Plus 3 or 4 naps a day. And the radio and television going full blast, if he is here or not . I do try to get out and run around for fun or errands.
My husband is almost 78 and is still working - and he has had heart problems and not too well controlled diabetes.
If FL does have a sleep schedule, may as well do your own thing while he can be guaranteed to be sleeping. I know about waiting and wasting days, while I wait for my depressed son to get up so we can hopefully get out of the house and do something.
LindaC
I can only say what you are already doing, hang in there, catch the moment when you can, best thoughts to you both :)
YAY, YAY, YAY for good news! With B working nights weekends can get a bit lost in an attempt to catch up on sleep and not being able to do it at more 'normal' times.
You're probably fretting over nothing but I think its compulsory that you should fret about Monday's appt.
Lin B - yes it is exactly like having a toddler around! ;)
Tanit-Isis - so sorry to hear you have the Big C in your family too. It certainly gets around.
Linda C - oh my, that sounds exhausting! All best wishes to you.
I do sympathise, and to some degree empathise with the loneliness. If we want to plan to go anywhere/do anything I reckon on a max 5 hr window of opportunity, and that assumes that he'll pay for it for the next couple of days at least.
Do hope Monday's news is not too bleak.
Please research Dr. Johanna Budwig's Cancer Protocol.
A seven time Nobel Prize nominee whose life's work is being promoted and shared by cancer survivors and their testimonials.
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