Well, just been told that I am now promoted to mince and moist!

24 hours on this without problems is their criteria for sending me home - so just warned the missus that tonight is the last opportunity for a hottub party! May be a day later if they want to drip feed antibiotics. 

Now I've had all kinds of issues with the feeding tube location as this is where the infection thing is. I'll speak to the boss later as I can't determine if having to sleep upright is due to this or everything else I've had done. The tube is out. 

Did you have to sleep upright on getting home and any problems at home with retaining an upright position in bed?

Cheers

Bfg

Omg. What is this stuff? Is there a collaboration with hills pet food? 2nd biggest incentive for getting home yet. 

Bfg

LOL BFG, 

it truly is rank isn't it. Picture the scene, you have been off food for weeks, you are all sorted op wise, then you are really really excited about your first 'meal'. The lid comes off tah dah- worms, maybe maggot looking with a large garnish of gravy mmmmmm. He came home xmas eve, still on 'purée' , so xmas day I did the full monty - pureed with gravy, he quite enjoyed it, Boxing Day tah dah- turkey curry- purée..., but by week 4-5 he'd 'graduated' to coarse mashed. TBH we didn't have a special or separate menu for him, just adapted the usual grub. We do aim for high protein and fat, as every mouthful has to be as high in calories as possible, as it is half the quantity, so eggs, cream, meat, anything that is off limits set by the 'health police' (:

He got a post op infection as well, chest, about day 4, but they were on it.

Feeding tube- yep, He still has his in. No overnight feeds after 2 weeks home. They wanted to leave it in until the post op chemo was done- it has proved quite handy , in that after his chemo he feels so sick , so for hydration purposes he chucks  in about 1000 mls a day so he doesn't turn into a prune or needs to be dripped- although he has broken the stitches a few times, they just sew it back up (:

As an ex nurse I am (or so I think) a master at pillow management (:. The V is the way to go. So 2 pillows, then two more shaped in an upside down V, then another over the top bingo. Still works now, but he hates it , but has to as gets re gurg.

Just think about that beautiful burger with loads of cheese and mayo with a beer that awaits you. Mmmmm

That's it.  Textured chicken that looked like worms and very likely tasted of them. I can't believe I did eat it, but didn't quite want my dinner - so ended up with some muller yogurts.  Got to watch that sugar levels though. 

They are keeping me in for the extra 24 hours before sending me home with oral antibiotics , assuming they are doing their thing. 

Partner has already planned her trip to waitrose tomorrow for lots of goodies.

Cheers

Bfg 

Yaaaayyy. Nice one BFG.

Anyone know/heard what Ray is up to??
 

Husband  , has from tonight been put back on overnight jej feeds. The weight is running off him 20lbs off now , most of it since surgery and the FLOT. He eats as much as he possibly can, but when he is feeling yuk with the chemo, his appetite really goes. We eat a high protein and fat diet as it is. Anyone out there who can make sense of it for me. Will he be on the jej for life!!!!, how common is it to go back on them and does weight eventually stabilise??
He will disappear at this rate!!!!

Hi Hilts

that must be frustrating but weight will be lost (except for me,  Mr anomaly  - which they are saying is a bit of fluid retention) and 20lb isn't evidently that excessive. 

I googled the question regarding bariatric and weight loss  (of which this an extreme fom I guess) and people were complaining of only 20lb loss after 4 weeks if you can believe it. 

The chemo affects the body -  I had minimal change of diet throughout but the weight varied with 12lb range even within a few days. 

He will be off chemo soon! And a diet/ weight/ beer balance will be found. 

In the mean time just make sure he doesn't pull on those tubes like I did!

Bfg

LOL,

BFG- you sound like a carbon copy of my old man (: . Pulling the tubes out....... already a bl**y expert at that, not out out, but  has broken the stitches around the jej several times.!! I can stitch quite well, so I have 'threatened' him , I'll fix it!!!!! Without lignocaine!!
Dietican says they are going to feed him overnight, to 'stablise' his weight loss. But you know, like you, but not quite how quickly tall people appear skinny.

It is only in the last 2 weeks or so that it is really dropping. After the 2nd chemo (pre op)shrank the blighter and he was able to eat normally, his weight went up by 8lbs(: even initially post op he retained , but it is now , with one last chemo to go

keep in touch 

My main problems at the moment are breathlessness and reflux about 5am. Sitting upright in bed is OK unless coughing,  in which case I have to move and sit in the edge of the bed - and just this act makes me incredibly breathless - not for long,  about 2 - 5 minutes.  Walking around is OK - just have to remember to duck through those pesky doorways, but again stop every few minutes to catch my breath. 

As for the reflux,  I think I must be slipping down the bed - gravity and all that.  But when it happened again this morning,  unlike previously which was dealt with a sip off water and walking, this was more pernicious - took much longer to settle down,  lots of coughing,  sips water didn't help. Must talk to the nurses to see if I can take anything for it once it's happened. 

Keeping the faith!

Bfg

Hi BFG, 

Afraid/ happy to say you are an exact photocopy of my old man (:!

The thing is, when they 'do' an oesophagectomy, particularly if the cancer is toward the lower end.they  very often remove the valve at the top of the stomach that is there to keep the content nicely tucked up in the stomach, so there is no longer a 'valve' to stop backflow. Sorry if a bit graphic, but helps , I think in u derstanding what is at work.

How to manage it , is they key. So he has got a lot better over the weeks. We have listened to the advice, but also adapted it.

The cough has settled now, just sometimes if over eats or a lot of oral fluid on board. He takes Omeprazole 40-80 mgs a day and quaffs gaviscon of an evening and has a nose spray. As for sleeping upright, helps but doesn't completely stop it, but in early post op period it did help, but he too slipped down the bed. The crucial thing is I think is to say is it really does get better with time. He is now almost 16 weeks post op. When you think about the massiveness (queen's English) of the op, it takes a lot of time for the body to first heal, then get used to the new plumbing and digestive order and if you are anything like the old man he used to gorge wildly on anything that took his fancy!

The 'dumping ' syndrome a lot talk about has even got better and he is getting away with more in terms of volume and variety. We have just been out shopping (for essentials- of course) first time since blo'dy September !! He went and bought a tray of 12 doughnuts!!!!! For the kids apparently, but I note 2 are already missing !!!!!

The biggest problem that remains for us is the psychological impact of an utterly , almost surreal event, on top of the covid shenanigans- which have really been in the background for us.

Doug- our threads post op guy has loads of really sensible and pragmatic stuff on his posts and very much talks about how it is time that really that makes the difference- he is almost a year post op- so effectively our real expert .

I think all husbands cohort (3 blokes, same age, same diagnosis, op at same time dah de dah) have all found huge improvements over the weeks, but have all got pee'ed off with the 'inconvenience' of recovery in terms of how much they have had to adapt. But like I say to him 'recovery' is the exact point and you & body don't go through all that without re adjustments,

Anyhows , keep the faith and trucking along.