Breathless

More news from St Barts - minor setback in that Rick has a bit of a chest infection which meant yesterday going down for an x-ray accompanied by a "trachy trained nurse" with all her emergency gear, now on antibiotics which does seem to have made a difference. He had a go last night breathing with the trachy tube capped off, but couldn't. This morning the doctor established that the wrong tube had been used (one without a hole for breathing) and put it the correct one with a hole; he was then able to breathe but it was hard work. He'll have another go tomorrow. The stitches holding the tracheostomy tube in have now been removed - it's now held on with tape and velcro; the staples are coming out of his neck bit by bit and that is all looking good; the plastic surgeon has re-dressed his arm (where the flap was taken from) and commented how well that was doing. He does have a revised date of discharge which is now next Monday - the nurses thought that the bed manager was a bit premature in wanting her/his bed back - and that it is not significant. Oh yes, he did swallow the blue water and it didn't leak out anywhere it shouldn't - his neck is officially water-tight!
All in all he is making good progress. One more thing, Rick asks me about whether there have been any comments for his blog and I know that these later ones are not what the earlier ones have been (by a different author) but if anyone does have the inclination to add a message he would be very pleased to hear about it.
More tomorrow,
Catherine

Still looking good

Another good day. Rick sat out and watched the football - he could have done with extra pain relief for that! His dad, brother and nephew visited this weekend and were pleasantly surprised by his appearance; he looks marginally less horrific than they had anticipated - no, I exaggerate, he is looking ok except for the 6 days growth of grey stubble. The sooner that comes off the better!
When I asked him if there was anything I should let you know he said to say he is improving and that he'd "been for a poo", I'm not sure if that is too much information but I'm sure you are all pleased that some of his bodily functions are still working.
That's it for today,
Catherine

On the mend

Much better news to report. Rick is off the morphine drip and oxygen. He can have extra pain relief when required (and also oxygen )and he is managing well with that. He sat out and watched the football yesterday afternoon, and hopefully will do today. Still not able to talk at the moment, but the speech therapist is due to pay him a visit on Monday - lets hope she is more positive this time.
It is very hot in his ward - I'm taking in an electric fan today which of course will mean the weather will change!
Oh, the other good news is that his expected date of discharge is Wednesday 30th June - a few days earlier than we had originally thought.
I'll update later when we have visited today.
Catherine

Not all plain sailing

Rick had a good day yesterday; doctors were pleased, apparently his flap is nice and pink, he had a walk around,a sit in the chair and a nutritious feed of gloop direct into his stomach. He did sleep for about 5 hours whilst I was there - perhaps its my conversation!
Today wasn't quite so good; a minor hiccup with the RIG - it came out and a doctor had to be called to re-insert it; pressure sores are developing but he now has a electric moving mattress to prevent any more occurring. On the plus side, his chest is quite clear and he did manage to do 3 laps round the ward.
I shall go in tomorrow armed with biscuits for the nurses to make sure they keep a special eye on him. Nothing wrong with bribery and corruption.
Hoping for a better day tomorrow
Catherine

don't call me scarface!

Rick is out of Intensive care and back on the ward. He is still attached to various tubes, some putting stuff in and some getting it out, but the one he is very reluctant to let go of is his PCA (see earlier blogs if you have forgotten). He also has an impressive bandage on his left arm, not to mention the stitches and staples in his neck and chin which are pretty much as he described them looking earlier.
We've left him with a new notebook and pen so that anything he can't mime or act out he can write down for the nurses, that is, assuming he will release the demand valve for his morphine long enough!
Hopefully, after a good nights sleep (ha, ha, fat chance) he will be feeling that much better tomorrow.
Let's drink to hoping,
Catherine

Breaking news...

Dear All,
I had a phone call from I C U at St Barts at 4.30 this morning - Rick was back on the ward after a mere 16 1/2 hours in theatre. All went well, he is stable and has been throughout the procedure, he'll be kept sedated until lunchtime and then assessed. I'll go and see him later although I'm not expecting much in conversation, and report back.
Watch this space...
Catherine

Courage, Mes Braves!

Note to self: in the final blog before going for the operation, try to remain upbeat and don't show how depressed you're feeling. Your readers don't need to know the true extent of your pain and misery. Snap out of it - after all, football's only a game!

Have I told you that I'm going away for a while? So this will be my final blog for a few weeks, with Catherine taking over full editorial control, ably assisted in selecting song titles by Emma and Lucy.

I've had the convict haircut, I've packed my PJs, and come Monday morning I'll be ready. I'm intending to spend the final 48 hours in the bosom of my family enjoying good company, good food and good wine; I may have a tube in my stomach, but I'm still eating and drinking normally. Tonight I'll cook my final pre-op meal (Rosa di Parma, washed down with a bottle of Brunello di Montalcino, since you ask). Tomorrow, we'll go out for lunch before Catherine and the girls deliver me into the care of St Bartholomew's Hospital, where the NHS' finest will set about me. I'll be demanding maximum anaesthetic and pain reliever, and will meet my fate with complete cowardice.

Yesterday, Catherine and I dropped into Whipps Cross Hospital to see our new friend Cheryl the nutritionist. She wanted to check my stomach tube, which was all OK, but Catherine looked on in horror as Cheryl extracted gastric juices to test the PH, and then syringed water into my tummy. We were given a spare tube, and told that, should the current one become detached, we have a two-hour window in which to replace it. Catherine made it clear that this particular duty goes well beyond her current job description of wife and carer.

Cheryl also talked to us about the feeding process itself. It seems that you don't simply inject a quantity of gunge into your gut, but that the feed is mechanically pumped into the stomach - which can take up to 10 hours a day!

Some people have talked about coming to see me while I'm in hospital, but I hope you won't be offended if I impose a No Visitors clause. I'm going to spend 24 hours in Intensive Care post-op, and will probably be barely conscious for two days after that (so England could be out of the World Cup by the time I come around). I will also be unable to speak for up to a week, and generally feeling wretched.

The hospital rules stipulate a maximum of 3 visitors, so that's Catherine and the girls or other close family only. I don't want to seem churlish, but Susie's joke suggestion (at least I think it was a joke!) of a group visit to coincide with an England World Cup match, complete with vuvuzelas and cans of strong white cider, fills me with dread, and would probably lead to my premature eviction from the hospital. If you were looking forward to seeing me in my post-op misery, I'm sorry to disappoint, but I'm sure you'll understand. Catherine will notify you should the position change.

I've been pleased that some readers have gone interactive, responding with various comments to my posts. As I'm leaving you for a while, I've decided to set you some homework. The "Ten Songs About ..." feature at the end of every blog seems to have captured the imagination, so I'm going to ask all you blogtrotters to suggest songs about anaesthetics - which should be easy - and about intravenous feeding - which could be a little more challenging: maybe Pump It Up by Elvis Costello?

Anyway, let me thank all of you for your messages of support and sympathy. I'm sure that I'm going to need your continued encouragement as I recover and endure radiotherapy over the next few months, so let me dedicate to you ten songs about friendship.

1. You've Got A Friend - Carol King
2. A Little Help From My Friends - The Beatles
3. Why Can't We Be Friends - War
4. My Dear Companion - Dolly Parton, Linda Ronstadt & Emmylou Harris
5. We Hate It When Our Friends Become Successful - Morrisey
6. Your Best Friend - Doris Duke
7. Touch A Hand Make A Friend - The Staple Singers
8. Passionate Friend - The Teardrop Explodes
9. Old Friends - Simon & Garfunkel
10. You Got A Friend In Me - Randy Newman

I'll be back!

RP

The Stomach For It

Greetings. I'm back safe and sound after my brief stay at Whipps Cross, with a new fashion accessory attached to my gut.

The procedure went fine, but I was in a lot of pain afterwards. I now know that when the medical profession use expressions like "uncomfortable", "some pain" or "a bit sore", they inevitably mean that you are going to suffer unbearable agony. Also, painkillers don't kill pain as such, although I was mighty grateful for a couple of shots in the bum during the night.

For one reason or another, I've never taken out private health insurance, so obviously my stay was in a normal public ward of six beds. It's nearly 30 years since I have spent a night in hospital, and I'd forgotten the level of sleep deprivation to which one is subjected. Monday night was played out to a chorus of snoring, groaning and puking from my fellow patients. I've belatedly come to the realisation that they probably weren't just doing it to annoy me, but that's how it seemed at the time. There was also the tragi-comic spectacle of a confused old lady driving a zimmer frame into the ward at 2am, and threatening violence upon the nurses when they tried to direct her back to her own ward.

The ward has a radio playing throughout the day and night: for most of the day it was Radio 5, which was fine, but someone (presumably a devout nurse)switched it to something called Premier Christian Radio in the early hours of Tuesday morning. I know I've banned religious talk from my blogs, but believe me: 30 minutes of this stuff makes you feel secure in your atheism.

Anyway, got to go and flush my tube (don't ask). The theme of today's song-list is Visiting Time, because now I appreciate the feeling of desolation that comes over you when your loved ones depart.

1. Don't Leave Me This Way - Harold Melvin & The Blue Notes
2. Should I Stay Or Should I Go - The Clash
3. Hi, How Ya Doin' - Kenny G
4. Hello, Goodbye - The Beatles
5. Stay With Me Baby - Lorraine Ellison
6. You're Gonna Make Me Lonesome When You Go - Bob Dylan
7. Make Me Smile (Come Up And See Me) - Cockney Rebel
8. Ev'ry Time We Say Goodbye - Ella Fitzgerald
9. Come See About Me - Diana Ross & The Supremes
10. Lover Don't Go - Nick Lowe


Joy Always Comes After Pain!

RP

Saving Face

Let me tell you about our latest visit to Barts, in preparation for my operation next week.

Catherine and I went along on Friday afternoon, to meet a Speech and Language Therapist and Manny, the MacMillan Nurse. Those of you who have been following my blog will know that I've been highly impressed by the NHS staff we've encountered, but I'm afraid that the woman from Speech & Language Therapy was just rubbish. I'm not saying she's incompetent or incapable, but her interpersonal skills were non-existent.

She started off by going straight for the worst case scenario, which in this instance is that my pharyngeal wall is so profoundly damaged during surgery that I lose the ability to swallow, and spend a lifetime being fed by tube. She then became remarkably coy and evasive, seeming reluctant to even consider the possibility of a full recovery.

It's not that we can't take bad news - we're getting quite good at that - but we do also want a realistic assessment of the likelihood of various outcomes. This woman only wanted to talk of the nightmare situation, and seemed shocked that we were shocked. It also became apparent that she hadn't properly familiarised herself with my personal condition. At the end of a thoroughly uncomfortable and unsatisfactory conversation, she grudgingly admitted that I have "a very good chance of rehabilitating the swallow".

I must get over my antipathy towards this woman, particularly as she is going to be responsible for putting me through my paces after the operation to get me swallowing again, but I'm still seething two days later. One final point: I don't know what they teach you at Speech & Language Therapy School, but I'm willing to bet that it isn't to respond to all of your patient's questions with a nervous giggle, which was the intensely irritating mannerism she displayed on Friday.

Fortunately, our meeting with Manny was more positive, although it did involve going through all the gory details of the operation, which I will summarise now. Those of a sensitive disposition may want to jump towards the football and music stuff at the end of the blog.

The technical name for my op is mandibulotomy with radical neck dissection, tonsil resection, temporary tracheostomy, forearm free-flap reconstruction and dental extractions. Impressive, heh? Apparently the suffix -otomy means to cut or separate, so a mandibulotomy means cutting / separating the mandible, or lower jaw bone. A quick google search takes you to the Cambridge Journals web site, which states: "mandibulotomy provides excellent exposure for oral and oropharyngeal tumours, with low complication rate".

So anyway, what is this all going to involve? After the madibulotomy my chin will be joined back together with sutures, but the neck dissection will involve clips. I think this means that the scarring on the chin will be relatively neat and tidy, while the neck might look a bit more heroic. I'll have a drain from the neck lymph nodes. Before leaving hospital, I will be asked to drink a glass of water containing blue dye, to make sure the neck has healed: a niagra of blue fluid pouring from my neck is the tell-tale sign that all is not right.

The tracheostomy will shut me up for a while, but should be removed after 4 - 7 days, leaving me with a nice hole in the neck, or a stoma, as we medical experts like to say.

The forearm free flap reconstruction is a microvascular reconstruction, involving taking a piece of skin from my arm and fitting it to the back of my throat. Just to clarify, the word "flap" does not suggest that I'm going to have a piece of loose skin wiggling about at the back of my throat. Apparently, in this context "flap" describes the movement of tissue from one site on the body to another. This brings with it the possibility of fistulas or tracks (technical jargon for holes, I think). The medics therefore have to monitor the healing process very closely, with oral examinations every thirty minutes for the first 24 hours. Manny says I might find this a bit tiresome, and I suspect she's not wrong.

I'm told that this is all going to be a "bit uncomfortable" (thinly disguised medical code for "agony"). I will have a PCA (Patient Controlled Analgesia), which allows me to pump morphine into my veins, without the risk of overdose.

I will have a cannula in my groin for a drip, and a urinary catheter for the first 2-3 days. So with a RIG in my stomach, a drip in my groin, a wee-catheter, the PCA, tracheostomy and the lymh-node sump, I'll be a veritable spaghetti-junction of tubes.

All v. scary, but I'm feeling remarkably calm at the moment. Ask again how I'm feeling this time next week.

And while we're talking of unpleasant experiences, did you see the football last night? We watched it with our neighbours, and Geoff - a West Ham fan - vainly tried to use the unpredictability of the new ball as an excuse for Robert Green's catastrophe. It wasn't the ball: it was the crap goalie. Some of you may know that I have played in goal, and I'm no stranger to the odd cock-up. After a howler like that, I would face merciless teasing for seasons to come, but in Steven "Dirty Red Kopite" Gerrard's post-match interview, he said you can't blame the goalkeeper. Yes you can, because it was his fault!

I was amazed that the general view of the pundits after the game was that England didn't play too badly. Excuse me? This was the USA, with a Watford reject at the heart of their defence! I didn't think that anybody distinguished himself, and there were several performances that were well below par.

As for Capello, who has until now seemed faultless: will he regret the decisions to take injury prone Ledley King and Jamie "The Snail" Carragher? Why play Milner (who I really rate) if he's been ill all week, only to substitute him after 30 minutes. And all this stuff about Heskey being a great foil for Rooney: I'm afraid that a return of 7 goals in 60 internationals is simply not good enough. You just knew that when he was one-on-one with Tim Howard there was no way he was going to score. It's all too familiar, and gets me almost as worked up as dealing with the Speech & Language Therapist.

A couple of blogs ago, Susie suggested some songs for the Some-Chicken-Some-Neck compilation, so here's the top ten songs of determination and defiance, starting with her suggestions.

1. I Will Survive - Gloria Gaynor
2. Always Look On The Bright Side Of Life - Month Python
3. We Shall Not Be Moved - recorded by loads of people, but my favourite is Mavis Staples
4. We Shall Overcome - Bruce Springsteen (yes, I know that others did it before him)
5. Ain't No Stopping Us Now - McFadden & Whitehead
6. Keep On The Sunny Side - The Carter Family
7. Life Is A Song Worth Singing - Teddy Pendergrass
8. My Life Is Good - Randy Newman
9. Be Thankful For What You've Got - William DeVaughan
10. Ac-Cent-Tchu-Ate The Positive - Johnny Mercer

I shall be away for a few days, having the RIG fitted in my stomach. Compared to the mandibulotomy, this is a relatively minor operation, and I'm expecting to be back on Tuesday. If Catherine gets time, and feels so inclined, she may post an update.

Smile, smile, smile.

R

Rigging Hell

I've had a call from Ruth at Whipps Cross, to confirm that they’re going to be fitting the RIG in my stomach next Monday. I'll be going in some time on Sunday afternoon and staying until at least Tuesday.

Ruth sent me a leaflet about the procedure, which is packed full of useful information I'd probably rather not know, such as:

• I must expect pain for a few days after the procedure: i.e., it's going to be agony for weeks;
• There’s the possibility of infection at the site of insertion;
• There is also the prospect of overgranulation: not an expression I've come across before, but apparently refers to a "red raised area, which can weep with a brownish discharge - attractive!
• Also the likelihood of "feed-related problems" such as diarrhoea or constipation;
• the RIG is fitted under local, not general, anaesthetic, in order to ensure that I get maximum enjoyment of the process;
• before the tube is placed, the stomach must be filled with air through a soft thin nasogastric tube which is passed through the nostril, across the back of the nose and down the throat into the stomach. Nice! Apparently, I won't be released from hospital until they've checked my bowel sounds, which conjures up images of the scene in Blazing Saddles, where they sit around the campfire, eating beans and farting.

Hey, but let's look on the bright side: all the time I'm being fed by tube, I get my "feed" supplied free of charge - think of the money I'll save! Plus, there will be no need to waste time sitting around the dinner table munching steaks and sipping fine wine, as I'll be able to simply pump nutritious gunge directly into my stomach. Envious, huh? Helpfully, the leaflet states, "tube feeding does not involve the social interaction which often accompanies eating”, so I suppose I shouldn't expect too many dinner party invitations for the next couple of months, but that’s a small price to pay.

I’ve also had confirmation that I will be going into Barts for the big op on 21 June, so things will be happening pretty quickly from now on.

The timing of my operations means that I will be able to see England v USA on Saturday in relative comfort; I should also be able to catch the Algeria game the following Friday, but may be drugged up to the eyeballs for Slovenia v England on the 23rd (some would say that this is how I've spent every World Cup since 1978).

And while we're on the subject of football, I think I'm resigned to Everton losing Steven Pienaar: a shame, but if Man City are prepared to stump up £20 million, I won't be complaining. I'm confident that the best little Spaniard, Mikel Arteta, won't be leaving Everton. And the two so-called newspapers, The Express and The People, which have invented the rumour that David Moyes will be moving to the dark side, are just beneath contempt. Finally, the new shocking pink Everton away shirt is just shocking.

Here's the soundtrack to my facial operation.

1. Every Little Bit Hurts - Brenda Holloway
2. Tripe Face Boogie - Little Feat
3. Cut It Away - Jackson Browne
4. Funny Face - Donna Fargo
5. World Shut Your Mouth - Julian Cope
6. Scar Tissue - Red Hot Chilli Peppers
7. Beauty's Only Skin Deep - The Temptations
8. Lip Service - Elvis Costello & The Attractions
9. Anything by Smash Mouth
10. Wasn't Born To Swallow - The Byrds

Nil By Mouth!

RP

Through Gritted Teeth

Hello again. Seems like ages since my last communiqué, although it’s actually only been a week. The reason for the silence is not that I’ve been wallowing in self-pity; I just haven’t had much to report.

So what’s happened since the last blog? Well, we had an interesting trip to the Whitechapel Dental Institute, organised as part of the Bart’s operation package deal. It seems that as my operation will involve cutting through my lower jaw, there is the prospect that it will affect the blood supply to my teeth, and the subsequent radiotherapy will shut down the saliva glands on the right side of my mouth. As a result, one of the common outcomes for people undergoing this sort of treatment is rapid and extensive tooth decay.

The dentists tut-tutted about the amount of sugar I have in my tea and coffee (but not – surprisingly – about my alcohol intake), and made it quite clear that it has to stop, along with consumption of chocolates, cakes and biscuits, if I want to keep the remainder of my teeth.

The upshot is that I’m going to have my wisdom teeth and a couple of molars extracted when I have my op. Oh well: any boyish good looks that I ever had are already a thing of the past, and my face is in any case going to be so scarred that a few more missing teeth aren’t going to make me any more physically repulsive.

Yesterday was a return visit to Barts for my pre-op assessment: blood tests, ECG, MRSA swab, and lots more hanging around waiting rooms, but nothing too painful. Whilst I don’t have a confirmed date for my hospital admissions, it currently looks like I’ll be going into Whipps Cross to have the RIG fitted in my stomach on about 14 June, and will be in for two nights. This will be followed by the big operation, possibly on 21 June, and I’ll be kept in for two weeks, partly so I can recover, and partly to avoid frightening children by my appearance.

As a change from recent blogs, today’s ten groovy songs are all on a (vaguely) medical theme. Apologies to Barney for the absence of Motown tracks.

1. Night Nurse – Gregory Isaacs
2. Lady Doctor – Graham Parker & The Rumour
3. Ambulance Blues – Neil Young
4. The Drugs Don’t Work – The Verve
5. Hospital Food – Eels
6. Take Me Down To The Hospital – The Replacements
7. Medication – Spiritualized
8. Pain Reliever – Sister Sledge
9. Mr Ambulance Driver – The Flaming Lips
10. First Cut Is The Deepest – PP Arnold

Smiling toothlessly!

RP