If I don't have to get up for any reason (usually a hospital visit) I quite happily sleep for anything between 12 and 15 hours a night. That's a lot of sleep for a gwown-up. Hope it's doing some good. But if it is, the effects are not obvious yet, which also goes for the ECP. No appreciable change in eyesight, dry mouth or overall itchiness this week unfortunately.
So what to do?
Well, what can one do except Soldier On in good old British fashion?
Oh, and Rant and Rave a bit. And Swear and Throw things. Not so British, that.
But the Frustration has to come out sometimes.
Two hospital visits last week:
Tuesday, unscheduled visit to A&E at St Thomas's to replace NG tube which became blocked on Monday evening and refused to soldier on. Can't be British then. Tube replacement is not a very enjoyable procedure and was performed this time by a junior doctor who hadn't done more than one or two before. Having removed the old one without mishap, he pushed the new one up my nose. Unfortunately it went down my windpipe instead of my oesophagus; cue lots of gasping for air and urgent hand signals by Yours Truly. However, the second attempt was successful, happily, and the noo toob now works fine.
Thursday: appointment at Guy's oral medicine department, at which the consultant made it clear that my saliva glands have been permanently damaged by the radiotherapy and chemotherapy I've had and are very unlikely to produce more saliva than they do now. So at least the message was clear, though not very welcome of course.
The question now is how to deal with it?
Unless I want to continue being fed by NG tube for the rest of my life, which I most certainly do NOT, I have no option but to try and find sources of nutrition which my poor dry mouth can cope with. This means eating Sloppy Stuff like ice cream, rice pudding and baby foods,
and definitely not dry things like bread or crisps which soak up what little saliva I do produce and form themselves into an unswallowable ball of dry paste in my mouth. So this week I will start experimenting with various foods to see what my mouth can tolerate and to try and construct a menu of suitable things which are both edible and provide enough nutritional value to allow me to end my dependency on the tube.
Julia had the week off work and had hoped to manage a few Outings with me as welcome relief for both of us, but what with hospital visits and marathon sleeping sessions, we didn't get out for pleasure at all. Poor Julia did manage a couple of evenings out with friends and some daytime activities for herself, but it hardly constituted a Holiday, which she is in sore need of to ease the burden of drudgery involved in looking after her Ailing Husband.
And so we carry on soldiering on....
O shit to the salvia news. It's a bit of a case of beware what you wish for That childhood wish to live on ice cream has caught up with you.
ReplyDeleteI wonder if there is something you could add to food to make it easier in your mouth, but something that won't made it taste hideous. I will get Heston B on speed dial he has to have the answer.
But it also has an affect on talking doesn't it So unfunny. But at least it's one less holy Grail to have to make hospital appointments for as you know where you are.
I wonder what getting off the eating tube will mean to your sleeping pattern as your body must be more active when it's taking delivery of nutrition it might be your nights will be more rested. But then boredom and discomfort are excellent reasons to sleep.
Poor old Mr P you do seem to be overdoing this sickness lark xx
Yes, very, very boring about la bouche, BUT... I definitely don't envisage only baby foods... the word soup may sound dull, but I am a great fan... packed with deliciousness and nutrition, and last night I made a more than passable onion gravy with lashings of beer that made the sausage and mash slip down a treat... so don't despair too much... and lovely casseroles (made with more beer!). There are lots of possibilities. And who cares about crisps.
ReplyDeleteWSW (West Sussex Wildlife) has had to be more than vigilent - ... I have runner beans in a pot outside the front door - a pot is the only real chance to avoid decimation by bunny... but SOMEBODY has been dining on the leaves.... so, each night, as late as I can, I go out with a torch to discover who it is... SNAILS... getting fatter and fatter! I whip 'em off and chuck them in the field with a good telling off... I have a mind to mark their shells with nail varnish and see if they come back, and how long it might take them, as a sort of scientific study... alternatively, I could donate them to next doors chickens. And of course, with all the rain, slugs, slugs, slugs, slugs, slugs... eeeurgh! And flocks and flocks of geese flying overhead... a wonderful sound - they fly low so I hear the sound of their wings, they're heading south west... a magnificent sight... and chinook helicopters that make the house shake (not wildlife I know, but in the sky!) - rather exciting really, but they make me feel I need to hide. They like to practise around here as they can go up and down in the sand quarry just behind my house. Like an idiot I was once telling an American friend of my neighbours about how they compel me to run and hide, as if I were in Vietnam... only to discover he had been a helicopter pilot in the Vietnam war... that shut me up!
Snail removal has been working, as we had runner beans with the sausage, mash and gravy last night! Well, enough random talk from me... for now. Lots of love xxx
Thank you for your comments and sympathy, Girls.
DeleteAll v much appreciated.
Dixie, I think salvia's a plant. If you have difficulty distinguishing it from saliva I can send you pictures of each cos they really look quite different, even though they're nearly spelt the same...
Jo, quite right to suggest soup. Julia's done the same. Only issue is that I don't know how my taste buds will cope with savoury things after such a long lay-off. We shall have to see. The suspense is tangible.....
I did think the same. I reckon, hold back on the seasoning to start with - that could certainly come as a surprise at the very least... but a delicious home made soup is an excellent thing and would make a very good starting point. Quick and simple to make too.
ReplyDeleteMore runner beans for me tonight, before Stanley Snail gets them! xxx
Dhal, say I..great stuff. Sloppy with umpteen possibilities. And I agree with the 2 J's about soup.
ReplyDeleteBut even babies start on pureed fruit before graduating to veggies. Sweeter and easier to digest for stomachs unaccustomed to the hard stuff, whether because of immaturity or long lay-off on toob. Stewed apple (big favourite), graduating to pumpkin (also v.popular) before blokblik, as it was known as soon as words formed (or broccoli to a grown-up). That was the order for Ellis and Frank, if I recall it right. And pumpkin makes a great soup too - sweeter than most. But baby food from jars came straight out (the mouth, I hasten to add) with expression of shock and horror on the face. So avoid that!
Am being called for my supper - how appropriate!
YELS xxx
Hello Lovely Chap
ReplyDeleteI have missed reading you. Had a problem once though as I got teary on a train when I read one of your messages to Julia. How dare I cry all I have done is read - walked and pulled on that rope all those months ago? I love how you write Patrick those words are so well put together ..well all apart from the jokes - you could try harder in that area.
I agree with soup but not Mulligatawny just yet...consider too rice pudding and custard. yum
Please give the super star wife a kiss and have one yourself x x
Anne