Home thoughts from a hospital

So here's the latest, straight from the horse's mouth, faithfully transcribed by the horse's wife.

As I said in yesterday's blog, the new flap in my mouth is healthy. That's the new flap, taken from my chest, and neatly displacing my right nipple, as opposed to the old - now sadly deceased - flap, which as you recall was taken from my left inner-arm. This has left a very impressive, but totally pointless piece of scar tissue on the arm, plus a very neat patch on the thigh, which was used to patch up the arm. This is getting to be a bit like a rendition of 'Dem Bones', isn't it?

The lingering problem is that the operation to re-attach a loose piece of flap was not totally successful, and so it remains there, wiggling, while the medical profession scratch their heads.

Yesterday (Saturday) I was told that the likelihood would be a further operation, but this morning (Sunday) one of the doctors has cast doubt on that, suggesting a period of healing may be more appropriate: "could be a week, could be a month". Apparently el supremo, Dr Dilkes, will decide tomorrow (Monday).

The frustrating thing, 3 weeks into a 2-week stay, is that I'm starting to feel better. The pain in my jaw has moved from indescribable to merely unbearable; I'm hop-skipping-and jumping (sort of) around the ward, and have even managed some nighttime sleep. The fact that I'm scribbling stuff for the blog is probably the best indicator that I'm coming around from the sense of isolation.

So this week's key target is to lose the tracheostomy, regain the power of speech, and drink that glass of water I've been promising myself. Did you know, it's 3 weeks since I spoke, ate or drank. Intravenously digested energy drinks are fine as far as they go, but can't compare with the irresistable aromas emanating from the hospital scoff trolley. It's also 3 weeks since I brushed my teeth, so the breath must smell great. This morning, I've been given permission to resume brushing those teeth which remain, but front teeth only.

Throughout all this, I've completely missed Wimbledon, and most of the World Cup, although I did look on in horror at England's thrashing by Germany. I also hope to see the final tonight. (He didn't - CP)

I think I did the '10 songs about home' in a previous blog, so here are ten about loneliness:-

1 I've been lonely for so long - Frederick Knight
2 I'm all alone in the wilderness - The Pogues
3 The night's too long - Lucinda Williams
4 Without you - O V Wright
5 Hey there, lonely girl - Eddie Hollman
6 I'm so lonesome I could cry - Hank Williams
7 I'd rather be lonely - Louden Wainwright III
9 Lonesome town - Rick Nelson
10 If you think you're lonely now - Bobby Womack

Flapping my broken wing/ winging my broken flap.
RP

From the horses mouth

(Written yesterday)
Good afternoon, friends. This is the real-life RP speaking, from the Bedford-Fenwick ward of St Bartholomew's Hospital. I'm currently on day 19 of what was supposed to be a 14-day stay, and I've just been given the news that I need yet another operation, albeit not major surgery.

I'm sure you've all been following Catherine's regular and admirable updates, but just to summarise:-
- initial madibulectomy and free-flap reconstruction on 21 June seemed to go well, until;
- we discovered on about 30 June that the flap had died, so I went in for a second op, taking skin from my chest to serve as the flap at the back of my throat;
- a few days later, the plastic surgeons noticed that a couple of stitches had worked loose, so it was back to theatre to fix them;
- it now seems that further stitching is required, so I'll be returning for more surgery next week.

So this represents another setback, and another delay, and whilst it's a disappointment it's not a disaster. I'm longing to be away from this confounded place, and have an extreme craving for - believe it or not- a cold glass of water (nil by mouth for the last 3 weeks!). But these wishes will be fulfilled soon. Chin up, cheer up!

Here are ten songs about life's propensity for going wrong.

1 Why do I keep f***ing up - Neil Young and Crazy Horse
2 Looks like I'm up s**t creek again - Tom Waits
3 Life gets tee-jiss - Tex Williams
4 I can't stand up for falling down - Sam and Dave
5 It's the end of the world as we know it - REM
6 Many rivers to cross - Jimmy Cliff
7 The sound of crying - Prefab Sprout
8 I'll never get out of this world alive - Hank Williams
9 Heaven knows I'm miserable now - The Smiths
10 Easy's gettin' harder every day - Iris De Ment

C'est la vie
RP

Cuff down!

Dear All
More good news - Rick spent the afternoon (and probably the night) breathing with the trachy cuff down - which is progress. To explain - the trachy tube is held in place by an inflatable ring or cuff, I imagine it to be like a childs rubber ring, when this cuff is fully inflated it prevents any saliva going down the throat and therefore stops the cough reflex. The first step to having the tube removed is for Rick to be able to tolerate having this cuff deflated - I suppose a sort of half-way house in trachy world - and yesterday he managed it without any problem. Previously he has struggled, probably not helped by the chest infection he had to contend with at the time, but this time it was ok.
So, what with the new blood and the prayers from next door Rick should be home in no time! Of course, there is the small matter of his neck healing as well, the drains being removed and the staples out but apart from that we are home and dry!
Catherine
If anyone wants to email Rick rather than blog his email is Parsonsrichard1@sky.com

More blood, please

Rick looked pretty ok yesterday, better than he has been for a while. He is now able to "self-suction" his mouth so that now he is not sitting dribbling in his chair - not a pretty sight. He also had a unit of blood to augment his own, this should aid the healing process - can't make it much slower anyway. Talking of healing, Rick now has a new neighbour who seems to have had a pretty similar operation. I had barely arrived yesterday when the first of a series of what seemed to be bible reading classes had started around this chaps bed - perhaps the religious goodwill will extend to Rick's bed and he will get out of there that much quicker, it will be an incentive anyway!
I don't want to say too much in case I jinx Rick's recovery, but things might just be turning around.
Fingers crossed
Catherine

So far, so good

Well, the operation seemed to go ok yesterday - he didn't need to visit ITU this time! He was off to theatre at 2pm and returned to the ward at 5pm, conscious and wrapped in what looked like at plastic bag (it was actually a recovery blanket type thing). Anyway, his flap was stitched; a new drain put in his neck - a stitch had come loose in in neck as well, so that is tidied up; his scar on his neck has been extended slightly; and a tooth has fallen out! Not sure if the tooth fairy visits in hospital...?
He was back up and sitting in his chair when I left, fingers crossed it will be third time lucky.
One more thing, I now have access to Rick's email account - he has no secrets safe from me now! - so I will check to see if he has any personal emails and print them off to take in. He's asked me to ask his blogging public not to stop responding to 'Somechickensomeneck' either. That is all messages passed on for today, more tomorrow.
Catherine

A stitch in time

Rick has had yet another setback yesterday, hopefully not too major. Apparently, there was a stitch loose at the back of his flap which Miss Patel wasn't too worried about. Then Rick had a coughing fit at about 5.30pm yesterday, was sick, and couldn't get his breath etc which has loosened the back of the flap a little more. She did come to see him (mid surgery) at about 10pm last night and said although the flap was fine ie she wouldn't need to re-do it, she would like to take him down to theatre this afternoon to have a look at it and put in a couple more really strong stitches at the back - he has got a forceful cough. So thats where we are at the moment.
Before all this Rick asked me to put a note on the blog to say thanks to everyone who has sent personal emails, letters etc. He says he will get back to you, but he's sure you will understand the reason for the delay. So thank you everyone.
If I say third time lucky, will I be tempting fate?
Catherine

Bruised and battered

Rick is improving slowly and steadily. Flap observations are now down to 4 hourly; he has one drain removed from his chest (one is still in which makes walking around difficult); catheter is out; his arm is healing nicely. His chest is feeling very tight and sore where they took the latest graft from - to be expected of course.
He did do 2 laps around the ward yesterday with the physiotherapist - he carried his drain bottle, she was carrying the oxygen cylinder - but apart from that his walking was fine.
The ward was quite short staffed yesterday, the nurse who seemed to be dealing with Rick is a lazy b*****d and wanted to re-catheterize him as he hadn't passed enough urine. Probably due to the fact he wasn't given the opportunity to try, and his fluid intake was not excessive. By the time I left, Rick had passed urine, the nurse had gone off duty, and the night staff seemed competent - she was giving him double the food - again I don't think he had had enough yesterday. There may be a letter of complaint coming on - probably when Rick has left the ward, I will take names today...
Apart from that, all is ok.
Catherine