Wednesday, 28 April 2010

Captain's Log - Star Date:

Boy oh boy, am I a lucky jack?
The Doc told me yesterday
That I was "bang on track"

Your operation to cut out glands
It went really well, and
We ended up with lots in our hands

In all we removed there was no cancer
So as far we can see
We have killed of the invading chancer

So it time for you to go recover
With monthly check ups
To give us all some cover

Well can you please take my feeding tube?
I suppose I can arrange that, yes
And out it popped with the aid of some lube

So while that leaves yet another hole
It seems, for the moment
That I am once again whole

Tho' don't feel like trumpets or big celebration
As my thoughts turn to those
Who are still on the treatment rotation.

Sunday, 25 April 2010

Rubber ear

One funny side effect of having some cut a large flap in your neck is that the nerve ends round about it don't work so well in the weeks (and, possibly, months) after.

So, combined with the odd situation where, post-radiotherapy, I get stubble in a little diamond shaped area around my chin, which is surrounded by an almost completely baby smooth area, I've now got feeling down one side of my face and neck, but not down a fair bit of the other.

This explains why it wasn't sore get unzipped, but the funniest bit is my right ear, where I can feel the front little but of cartilage, but then anything beyond that feels sort of like that pins'n'needles feel you get if you sit reading you book in the toilet too long (boys) or sit with one leg folded under you for too long (girls).

To my hand its like a rubber ear and to my ear its like I've only a very faint feeling, which is mighty odd when you try and put an earphone in. It must be like trying to put one in someone else's ear; you need to use both hands to direct the plug into the wee hole rather than just being able to guide it in with one hand.

Still, mustn't grumble, could have an unwelcome lump instead.

Next stage is back to the 'joint consultation' this coming Tuesday, where I should hear from the full range of medical disciplines and find out what they found in the flesh, lump, muscle and vein that got the chop.

Papering over the cracks

Well, two weeks of zipneck came to an end on Friday when the Practise Nurse at the GP Surgery popped my staples out. (Image courtesy of Keir Klics)

She counted them first (24, and nowhere near her record of 50). I asked if they hook under like normal paper attaching staples - "oh, yes - just the same, so I have a special tool to get them out". To be honest it was painless - there's a good reason for that - and her tool looked like a wee pair of scissors that kind of slip under then open to pull the little blighters apart, before lifting and separating.

Only wee issue, which I'm sorry to say that you can't see from the photo, is that "your wound hasn't bonded very well at the front". Remarkably, most of it seemed to fold neatly inwards and leave an attractive line down my neck, except the bit at the front - which must have been where I was oozing from immediately after the op -"where there is a small gap, and I think it needs held with these paper stitches."

So, I've got some paper over the gap for a few days and I've to lay off the exercises in case my head falls off.

Friday, 16 April 2010

Home Stationery

After revealing my drainage issues on Tuesday & Wednesday, offers flooded in from people with good plumbing contacts. Though thankfully my other downpipe dried up overnight Wednesday and I was unplumbed on Thursday.

More of the same from the fairly feisty Staff Nurse "just you take a deep breath and I'll....jeez is this one even longer...". Still, drains out, cannula out of hand and then able to have shower without bits of kit to bother about. Luxury. Well, relative luxury of an echoey wet-room shared with the 6-man and just the odd streak of the red stuff to mop up.

So home Thursday PM and having pulled the final dressings off today, here's a cleaned up photo showing my stationery supplies since I know that some of you enjoyed the first one so much!

ps Next week should see the start of a new spot the drain hole competition, open to the eagle eyed who can win a gift wrapped length of plastic tubing and a short course in staple removing.

Thursday, 15 April 2010

Numbness and Nerves

After my oozy night, early move and plumbing operation, I was just dozing off when I was aware of the magic curtain closing as three new nurses who announced that they were from the brilliantly entitled 'pain team'.

Was this the masochists nasty nurse dream?
Or were they simply from a mis-named team?
The latter I'm afraid my fetish fad friends
They simply wanted to supply drugs for pain avoidance ends
I'm not sure yet what happened to the tramadol promised
When I answered "I'm too numb to tell to be completely honest"
Soon off they all went with cheery wave
As the physiotherapist appeared my shoulder to save
Could I try to do this, and could I maybe do that
Exercises in a smock - must have looked a prat
Good news though too, about my movement in fact
The surgeon had left my shoulder nerve completely intact
So exercises 3 times a day for months to follow
To make sure I can cope after a muscle was hollowed.


So Tuesday came and Tuesday went
Those Nurses are really heaven sent
They mopped my ooze through day and night
Not moan to be heard about their messy plight

I lost count of the time my neck was re-covered
Then on Wednesday morning a dry drain was discovered
Not sure if this is what prompted the change
But soon it was time for a ward that was strange

Quite soon a Doctor was doing the round
And confirmed the 'drain 2' judgement was sound
I'd a sudden lift, then dawning sensation
How would it feel on drain extrication?

But not worry, its just an everyday chore
Said the nurse as she asked "have you had one before?"
Just you sit there now and take a deep breath
And she tugged out some tube about 4 inches in length!

What the L?

Though some parts have been caused to swell
And you can't really see the full shaped L
I captured a photo of the fine stitching job
Achieved whilst under the surgeon's spell

Tuesday, 13 April 2010

More Stitches Than an Arran Jumper

Tuesday 13th

Woke, slept had blood mopped up and made use of several bottles through the night.

Couldn't really get out of bed due to wooziness, drip full of drugs to my left and two bottles attached to tubes running from my neck on the right.

The tubes it seems are my 'wound drains' and are the measure of when I'll get home. Too much drain means I'll just be stayin'. One of them is oozing though and so I made a bloody mess of my smock and bed. Socks were OK.

After new dressing, porridge, new dressing, Dr's round, then new dressing I was allowed/sent to the bathroom whilst they cleaned my bed.

Quickly de-smocked I finally got a look at the giant inverted L Guy had cut for me and the lovely stitch work that any seamstress would be proud of.

And, well, that's it so far, except for a new dressing that's about 3 inches square held on by a 5 x 4 sticky pad Photo if I can manage it!

More tales of recovery later...

Smocks, Socks and Bed Hops

Monday 12th

After water only breakfast, got to SJH in good time for my morning chop. But an amazing array of bed changes going on meant I was able to enjoy daytime telly between 8am and roughly 11.25am. My nice clean bed came with the usual operation smock. And, a new pair of highly fashionable socks.

The socks it seems are to help prevent DVT as I would be lying still for up to 5hrs during the Op. Plain white knee length with a gap between the toes for ventilation, if you must know!

Bit of a queue outside the theatre meant I had a few minutes chat while they "cleaned up the previous one". Discussed today's music choice and was told that there would be a wee air bed too that periodically lifted them up to keep them moving. All very clever. Before I knew it, the sound of Guys' Motown Surgery Selection was fading fast and next I knew I was waking in the recovery room around 7pm.

After a wee wait due to a tad queasiness I was wheeled back to my ward, but to a different room. Seems the first rooms gender designation had changed while I was a way and all the blokes I was with earlier were scattered round this new one having had their Ear, Nose or Throat sliced, diced or spliced. Too dopey to see what mine looks like, but I could feel admiring glances...

Sunday, 11 April 2010

Cool Guy

Well, I said I'd be back soon and here we are again.

Though the post-radiotherapy month of nothingness seemed long, I guess it just blip for someone of my grand old age and when it came to an end, boy did things start moving again.

Over the past two weeks, I saw the dentist, who could give me a filling if I didn't mind. Mickey Mouse one it was with no anaesthetic and then she asks if I could see the hygienist. Of course. Tomorrow? Jings! Well, bit of a bump back to earth here with lessons on tooth brushing, advice on cleaning between teeth (with new tee-pee brushes, which are weird) and strong advice on the need to comply if I want to keep my teeth in a post-saliva existence.

Two days later and I'm back again for a chest/neck CT scan (with contrast!). Nae bother really, the contrast being a dye they can follow through your system, which I guess helps spot unusual blockages on the way. Understanding here was that I'd get results from the scan the following Tuesday at the 'joint consultation'.

The joint consultation was kind of where it all kicked of in earnest back on October with a large cast of experts from: ENT, dentist, oncology etc. Surprisingly though, Anne and I were simply met by this one guy; the surgeon.

His technique reminded me of some managers' approach, with an opening gambit asking me why I thought I was there!? Eh? Well, to get the results of my scan and confirm that surgery is going ahead.

Well, pretty much he said, but there's no real 'result' from the scan, though, yes, he would be going ahead with surgery on 12 April. You see, the scan is never really conclusive and in actual fact his experience shows that they will go ahead with surgery and then find that in up 45% of cases, what they have removed was completely benign. Great.

What about complications? Ah, well, Guy usually asks his students which items (apart from the glands that have to go) from neck muscle, nerve running to shoulder and jugular vein can safely go. It seems there are plenty of other veins, he'll take the muscle round about - "which will leave your neck a little uneven", but the nerve is important for neck, shoulder movement and he'll look to avoid damaging that completely. Goodness.

Oh and he'll try to make squiggly incisions, not because he can't make straight ones, but apparently they'll help healing as shoulder movement may put too much tension and pull open a straight wound. Beard?

Topping this was his advice on recovery. The oncology guys reckon I'll be in for two days? Erm, yes, two days minimum, maybe more like four, it just depends on how well the 'drains' work on your wounds. Yes. Drains.

And, after that? Oh, could be 6-8 week I think, because your still recovering from radiotherapy, which is a pain for us surgeons, and the operation takes 5-6 hours - a long time under anaesthetic.

If radiotherapy doesn't help surgeons, why do they do it first? Really doesn't matter to me says, Guy, I'll chop out just as much whether I operate before or after - just to be safe!

I guess that's great, and there's nothing else to do but pack my PJs and slippers and get to St John's for 8am tomorrow!

Gory details to follow in a few days...

Friday, 26 March 2010

Ashes to Ashes

"So Mr Gowan, how have things developed since your concept post 'mission status'?"

"Well, to be honest, DG, (can I call you DG?) that concept was a while in the brewing and I think I was at a substancial high when it popped in there to set a melancholical melody to a musical maestro's masterpiece."

"Interesting. Can you expand at all on how it 'popped in there'?"

"Well, it just popped, I can't really explain how ideas occur when ones mind is a muddle of morphinic manifestations. Though one aspect may be the juxtaposition between being abandoned in space, whilst seemingly linked, but just out of reach, of the world you know. Do you know what I mean."

"Not entirely, but I guess some of your references are to out of body experiences, as it were, induced by a certain state of mind and, well, lets be frank, powerful drugs."

"You seem to be setting Mr Gowan up as some sort of junky."

"Junky, flunky or organ grinder's monkey, the implication is there that some of your thinking at the time was enhanced in some way."

"Yeah, I suppose in that respect you could imply that Mr Gowan was a junky. Whatever the case I think he and I have moved on since then. You know, we're back in the capsule and mission control have come up with some ideas to pull this rabbit out the hat."

"You're losing me I'm afraid."

"Well, lets just say that there has been a connection repaired and while they need to check out my status first, they seem to have some operation being prepared behind the scenes that will draw this mission to a clinical conclusion."

"That sounds good, I think. I know you need to go now, but would you be happy to come back into the studio in the next week or two to give us an update."

"Yeah, sure. I guess by then I'll be hoping to be the man who safely returned to earth."

Mission Status

(May work best with this playing in background...) Hmmph, can't get link to work live - try to get Space Oddity playing on you tube first.

Western General to Mr Gowan
Western General to Mr Gowan
Take your morphine and your paracetamol
(10) Western General (9) to Mr Gowan (8)
(7, 6) We'll do an operation (5) - just don't know when (4)
(3, 2) Get a sick-line (1) and we'll be in touch with you.....

This is Western General to Mr Gowan, you've nearly made the grade
All the nurses want to know whose slippers you wear
And the dietitian wants you to eat more if you dare

This is Mr Gowan to Western General, I'm feeling rather bored
And I'm floating in the most peculiar way
All the days just seem to come then drift away
Here am I floating round the kitchen far from the world
The tiles are white & blue and there's nothing real to do

Though I'm past the heavy treatment now, it feels like limbo land
At least the mucous has really started to go
So I'm not such a regular at the spittoon bowl
Western General to Mr Gowan, just take the drugs if the pain goes on
Just take the drugs please Mr Gowan
And eat more Mr Gowan
But look out for constipation
Are you listening....
Here are am I sitting in the kitchen - and I hope for progress soon
The tiles are white & blue but there's nothing real to do

(c) EMI

Wednesday, 3 March 2010

One Man and his Mucous

When zapping was done
I thought, quick - run
Get out of here
And have some fun

But dozing next day
There was no sign of play
Just replacement blood
To keep the red-count OK

Then Monday came
With more of the same
Just no zapping
To give the day frame

So I started a Wii Fit yoga regime
Squeezed in between the drugs routine
And the sleeps and the feeds
At least it gives me a change of scene

Mentioned to the Doc my situation
She agreed post zapping can cause deflation
As many like to think its all over
But side-effects are just reaching peak concentration

So I sought a target for my neck-section Op
Dr Junor has promised she'll book it up
But keep taking morphine and the pain at bay
Until the flow of mucous comes to a stop

The morning glut I've mentioned before
Brought on by the initial toothbrushing chore
Though that seems to have reduced for now
And been replaced by a near hourly score

Sometimes thin and almost runny
Other times more gluey like a jar of honey
With family favourites the ones
That are choking, thick and muttony

So that's the latest from mucous glut man
As I sit here with my spittoon to hand
It seems there's a phase 3 and maybe 4
Which I'll be on to update you whenever I can

Thursday, 25 February 2010


Zappometer off-line for update. Phone 57777 to listen to message for next estimated update.

Monday, 22 February 2010

Crotchless Pants?

What with the ever increasing use of the old feeding tube, I was saying to one of the ladies the other day - during balloon top up reminder class - that I need a bit more tape to get my tube stuck up out of the way again.

Oh, she said, have we need offered you one of these before - pulling something from a drawer - I think they are like boob tubes. That'll save you lots of taping, especially since you'll be using it 3 or 4 times a day! Well, not to sure about boob tubes for the 40 something man, but as she opened up the splendid garment - what was there other than a pair of your grandad's Y-fronts, from the matching set that went with the string vest, but with the crotch cut off.

What a magnificent sight I must have been for this morning's zaps following just a week-end of undress rehearsal with my new string cor-set.

Sunday, 21 February 2010

Strange but true....

...last summer when I was in Sweden with Anne and the boys, we were accosted late one night in Stockholm Central by these two young Swedes - they turned out to be the journalist and his photographer form a local daily and were doing their daily survey where they ask opinions of the people in the street. Did Anne think sun-beds were a good or bad thing?

Can't really remember her answer which did appear next day, though I can now say that they give you quite bad sun-burn if you go everyday for 6 weeks and don't wear anything other than a plastic mask.

Its oddly shaped too (the sunburn) - sort of like the shape of a medieval armour piece that protects the collar bone and side of the neck, with funny white gap in the centre - perhaps if you left your armour in the sun over a lunch and forgot just how hot those dammed crusades were, then you too could have been branded in the same style as you popped it back on for that afternoon's adventure.

Fur balls

Some vague memory from school days came to mind this week - some video of an owl regurgitating a fur ball to get rid of the bits of mouse it couldn't digest. Strangely like a tiny cough and there it was, except mine was more like a food coated mucous ball. The first one was like a pea and ham gobstopper, I'll spare you details of No 2, - peculiar though the capacity that your body has that it can keep a gobstopper hanging around your throat unnnoticed until you're watching TV with the family and...cough, then you find yet another talent that Gallup don't seem to list.

Also on the furry front is my head - I'd noticed that some hair growth was creeping back, I mean, I had to shave twice last week! But while face growth seems limited to fu manchu style area, more overall coverage was appearing on my head. So out with the clippers it was but it was odd with no real feeling of of the usual zzzzmmmm as they cut through hair, instead I was building up little tufts of fluff like you might find on shaving a teenagers top lip. Still de-fluffed and polished up I am for week 7 at the solarium.

Regimental Fatigues

Blimey, someone has removed the stuffing this past week. I know that Doc Junor and her Posse have told me that the radiotherapy regiment will make me tired, but this really came home to roost with my afternoon siesta an alarming three 3 hours one day.

So Tuesday it was I think that consisted of up, shower, one man and his porridge, blast at LA3, blast at LA4, Chemo, home, kip 'til 6.

So, sorry to those of you I was in touch with last week about about a visit - just couldn't predict when I was going to be fit for active duty so didn't come up with any times for you.

Now on to 3 of those food supplements down the tube each day and extra strong drugs - Morphine and Giant Paracetamol along with the mucozade. Maybe they have some to do with sleeping for Scotland too!

Sunday, 14 February 2010

Up & Down

Up, down, up, down, up...yes that's it you got the rhythm from last week (8th-14th), which was up and down and loads of different fronts.

Down to hospital, up from hospital, biorhythms up, biorhythms down, trouble getting food down, trouble with food coming back up, red blood count down, red blood count back up, weight down, food in the tube up, cannae be botheredness up, time to go down.

Started the week brightly enough I think, but some spurts of sickness and possibly the Chemo put paid to that Tuesday/Wednesday. Was threatened with another blood transfusion, but remarkably my blood count seemed to climb at the thought and that was put on hold. Chirpy again by Friday though.

Only two weeks of this phase to go then recovery stuff before its time for the lovely sounding "neck-section". Hope I get a nice cut.

Wednesday, 10 February 2010

A mucii, a mucose, a mucositis

With the change of radiotherapy regime, came... a carrier bag full of drugs to help stave off mucositis. Yep, lovely, eh, just gargle after me one more time, mucositis.

Mucositis is an extension of my gooey glut really, its where the mucii takes over and makes you mouth and throat so mucousy (yes, I'm making some of them up) that you can't eat and drink. Not good.

So, prevention is the order of the day with mucaine (...a running around my vein) the much vaunted favourite at the Western. I suppose its only part of the package though, since it coats the throat to ease swallowing - sort of like a mucozade drink to aid recovery. On top of that are these soluble co-codamol tabs that seem big enough for a pack of Dugs, never mind a wee one like me. And, there's no getting away from it, Movitall, because the colossal co-codamol can cause constipation. Which is sh...

Thursday, 4 February 2010

Double blast news at last

Well, well, well - it turns out that Phase II isn't exactly more of the same. I mean I'm sure it will feel the same and look the same, with the same mask drill, same meshy face and background music, but this other Zappatron seems to fire electrons rather than photons.

As Captain Kirk and Mr Sulu would tell you, this is because photon torpedoes are very effective at destroying unwanted Clingons. But, as Doc Junor drew for me on Thursday this means my first 20 zaps had a wider target area than I thought and its a bit spine tingling to find out that my chord has been part of the area, so now they want to tone that down. So it'll be photons to front, electrons to the rear ( I am stuck like a tumour in you...

stuck like a tumour in you,
and I'm wondering why I ever first grew,
its so hard to keep growing this pace,
when I'm getting zapped all over the place,
photons to the front, electrons to the rear,
here I am stuck like a tumour in sorry, went off on one there)

The idea is that ol' lumpy still gets blasted with photons as they have deep throat penetration, but the glands and the rest of my neck will be downgraded to electron zapping from Monday. Can't wait!

Wednesday, 3 February 2010

Swallowing lessons

Well not exactly lessons, but a detailed discussion with a dietitian today on the causes of tickly coughs during throat cancer cures.

Glut woman was on form again today and had a colleague who was keen to test my swallow action, especially when I said that sometimes get a spluttering cough when I'm drinking. Which can be messy. You see, its possibly all to do with the swallow reflex not working properly and meaning that the epiglottis doesn't properly close over the larynx to prevent food or drink entering the windpipe. But why?

They don't know, but had me try out gulps and sips while they had a hands-on observation of my swallow action. Thankfully I didn't choke at the time but have promised to keep them posted on what triggers my occasional splutters - like this morning's coffee that I was enjoying until it was forcefully ejected during the pharyngeal phase and halted the esophageal stage abruptly!

Monday, 1 February 2010

Struck a chord

I finally created chip in the professional veneer or the LA3 massive today when they changed the music for me so that I could play my air guitar whilst im-meshed in the zapping routine.

Bit of Lynyrd Sknyrd to strum to while the Zappatron went about its business. OK, pop fans, it is soft rock for the mass market - in fact Neil Young's piss-take of Sweet Home Alabama beats it - but at least its recognition that girlie warblers can be known to prolong the experience rather than help it pass.

Perhaps, there will be Jam tomorrow.

Zappedy Doo-dah

Zappedy doo-dah, zappedy-aay, my oh my I get zapped every day.

And, apparently, there's a phase II! Last week passed without any alarms and only really my self-inflicted side-effect to bother me. 5 zaps, blood sample, weighed twice, quickie chemo, chat with dietitian, balloon updated and consultation with Doc J & the posse.

Interesting twist was when the nurses pinned me to the bed on Friday and said they'd be a wee big longer today, "as you know, for your 2nd phase, you need more markings on your mask". Eh, well, no, I didn't know about phase II actually. "Ock, just a different angle of attack that they'll do at LA6 from the end of next week".

Didn't ask if LA6 had a pet name, but will wait to get 1st hand reaction from that team. Not sure what it really means yet, but think that my daily left, right & center zaps (yes its really 3 a day) will increase by 2 or 3 so that at the final curtain of this plot, Withnail & I can go our separate ways.

Funny Ballon Animal

One thing I forget to tell about the tube, is how its kept in place now that the early scaffolding has gone. It's a balloon trick!

You see, there's a wee balloon on the inside that gets inflated, if you can inflate something with water, so that it acts like an anchor on the inside. Sort of like a harpoon, Dad? asked Keir - well yes, but with smoother edges. On the outside I have a 'bumper' that I need to keep close to the surface -except for the daily twist and clean routine - and that way I've a tube retaining mechanism.

It seems though that the water inside gradually evaporates, gets out or generally reduces in volume - they didn't seem clear on how - so I get to use another valve to extract last week's remains and top up with a new 5ml syringe. Sciencetastic.

Thursday, 28 January 2010

What's the difference between baby food and soup?

Nothing really, as I found out the other day.

Because of my self-inflicted side-effect anything that needed lots chewing of had a tomatoey base caused me eating grief. So I gave up on my pasta with chicken one night, but rather than waste the left overs in the pan - I wondered about making a soup with it for lunch the next day. Clever, eh?

Simply add your solid ingredients to the stock and simmer until thoroughly heated, then liquidise to the desired consistency....yes, well, I thought I'd used plenty stock but it gradually turned to light red baby food no 3 before my eyes. Oh dear.

Still, it tasted of chicken and pasta and got a meal down without having to the resort to the direct to stomach route.

Chewing gum

As I'm sure avid readers know, one of the main side effects of radiotherapy to neck & throat chappies is that your saliva glands stop producing as much. This is why the dentistry work is done first to let gums heal before the zapping begins.

Which is all very good unless you bite your own gum by mistake, on the side you use for chewing since it was left with more teeth than the other side and the ulcer you cause yourself doesn't heal quickly and complains about almost anything coming its way.

The external side-effect is that I am currently having to chew like a squirrel and am taking about 40 minutes to eat a course that would normally have gone down too fast in giant mouth fulls.

Still, at least it got me another new variety of mouthwash to supplement my 6 times a day bi-carbonate solution. Its tasty too. Though just as well to deal with the morning 'glut', as one staff nurse put it. I'm waking with a mouth that feels like a yogurt has been cooked to the inside overnight and when I brush my teeth the reaction between the yogurt and the toothpaste forms a remarkably dense foam that I'm bottling to use for cavity wall insulation.

More side effects to follow. I'm sure of it.

Wednesday, 27 January 2010

Bags of blood

First weekly chemo is next after tubing system still needs some poisonous lubing
But the real surprise during this short infusion
Was news that I needed a blood transfusion

What! I said, with some surprise
My slight alarm, I couldn't disguise
Oh, Mr Gowan, don't fret will you
The treatments can reduce your red cell count too!

So white cells down and now red ones to boot
Those platelets must be thinking they're jolly well cute
Though not for long as I'm back next day
4 hours of thick red stuff just flowing away

Another day and something else new
There are so many things that can happen to you
What comes next, I can't be sure
Though at least they always provide a cure!

Sunday, 24 January 2010

Tubeway Army

That's what it needed to tell me what to do with the feeding tube. (OK, yes, I was toiling for a heading.)

Though I forget all of the names, there was the lady who lives near me that who told me that it was her that arranged to bring the hundred weight of kit that goes with the tube, she also told me that someone else would be along to give me training. Then the usual suspects from the oncologist's team, the registrar and the clinical specialist before the lady from Nutrica who told me the in & outs before giving me details of my Nutricia nurse, the district nurse and the area dietitian. Fancy!

So, to the tube, first thing is to keep it clean. It needs a daily flush. Simply flip the lid, fit your syringe, undo the lock and flush before minerals and stains appear. For little top up feeds, one also needs to flush before and after; the feed is like a high protein milk shake - that goes everywhere if you forget to open the lock and the pressure means the milk shake shoots out of other valves. Sticky.

Top tip was to turn the tube round 360 degrees every day, as "this stop it sticking and makes sure that you form a nice round hole". Have to say that the first couple of days standing with the tube in in my hands and making the required twist called for some - mind over matter*.

Thankfully Anne was on hand to transport the gallons of full overnight feed, pump, syringes and various other accouterments because the staff nurse didn't think I was serious about needing a wheelbarrow.

*The Encyclopedia of Parapsychological and Psychical Research

Wednesday, 20 January 2010

A Ward Hoppers Tale

Last Tuesday was my latest admission foray
For my P.E.G. fitting the following day
Two nights they said I would be needing
For insertion of a tube just for my feeding

But after being for my daily radiotherapy
I encountered some unusual ward gallimaufry
Having reported as instructed to the usual ward three
I was surprised to find that they were not expecting me

It took a few minutes and a fast growing huddle
For someone from ward 4 to clear up the muddle
So I was on the list to be housed in ward next door
But please could I wait for she who manages the floor

I thought at he end it was well worth the wait
As the twin room she showed me really was great
Though she warned right away that I may not be alone
Should she need to find another patient a home

So I settled down with some quite easy sudoku
Until a quick return visit from the lady who knew
Who told me, sorry but I would have to scoot
As they'd someone, I think she said rather more 'cute'

No bother I agreed, to move right away
To another new bed for my 2 night stay
Ah - if only we had just one cute patient she said
It's a hike to ward fifteen for you instead

I wasn't too bothered, I was easy to move
But their system lacked such a simple groove
The welcome committee said go to room 7
There's beds to choose from in our peaceful wee haven

A confusing thing though was about to be seen
In that room 7 was also room 2 on ward 14
Don't worry she advised, as we know its our bed
But perhaps get out of dermatology for your shower she said

Telling my visitors how to find me was fun
A new ball of wool was going to need un-spun
This proved a problem for oncology staff too
As each arrived breathless, saying I couldn't find you!

Being positive though it was a not bad visit
Made pleasant by Sarah, a nursing flibbertigibbet
Plus different patients with new ailments to share
And...weird skins conditions that really do scare

Tuesday, 19 January 2010

When's a PEG not a PEG?

When it's a RIG. Silly.

After zapping on Monday it was slipper time on Tuesday, as I was due in to have my PEG fitted after Tuesday's zap. Despite a bit of gallimaufry about wards during my visit (see A Ward Hoppers Tale) I was fairly quickly put straight about my PEG procedure. Yes it was still on for Wednesday, but it was going to be a Radiologically Inserted Gastrostomy and not a Percutaneous Endoscopic Gastrostomy. Whatever, there would still be a plastic tube sticking out of my stomach at the end of the week!

So, Nil By Mouth after supper on Tuesday, early zap on Wednesday then wheeled down for my procedure dressed like an old woman. Nothing else can describe the theatre gown that fastens up the back and just about covers the knee, before the porter tells me that it will be a little cool out and folds a wee blanket over me like a nice cosy shawl.

Introduced to a cast of around 10, I find out that it's a little sedative and a local anaesthetic around the site. Nice, that way I'm awake to chat to Steven the surgeon about what's going on. First though, which nostril would I prefer? You see the radiological part is the guidance system that goes down to my stomach via my nose. It must be like eating live insects on one of those daft TV shows, but without getting to chew first. Steve keeps asking me to take a big swallow, but its weird and very tickly on its way down.

Then I hear it "scalpel! says Steve" - though can't feel a thing except my skirt being lifted and someone with rubber gloves on massaging gel on to my stomach. There's wee bit of chat, but before I know it, the stitches (well, staples) that are holding my stomach up near the surface are in and Steve's trying to stop one of them from weeping blood, or something.

Then its all over and I'm pretty soon back to bed with instructions to buzz for morphine(!) when I need it - they seem pretty certain that it will be sore when the local and sedative wear off. Correct.

I have a peek later on and wonder if the name RIG was the chicken or the egg; its looks just like a wee oil rig with the main well centered on a round platform and three columns spaced out at points of the triangle with support cables running through them.

I pretty much woose out of movement on Wednesday and when I make it up on Thursday I find an immediate wee issue, I'm like a Dug with two d-d-dangly things. Where do you put it while you go to the loo I wonder? Eventually surgical tape saves the day and I waddle off to get my daily zap.

Home in time for tea and first public showing for the boys - wow they say, what do you do with that???

Monday, 11 January 2010

Zappy new year!

Things are hotting up on the treatment front with the initial zap hitting home at lunch time today.

My chief zapper, or Radiologist in hospital speak, is called Laura - didn't ask if she had an uncle Frank. Though did ask what the team called the mighty machine that spun round to zap both sides of my neck. I don't think they shared my sense of the absurd though - so its Linear Accelerator No 3. Today therefore its no nonsense and science instead.

The linear accelerator uses microwave technology (like radar) to accelerate electrons inside the machine which then generates high-energy x-rays. The high energy x-ray beam is then directed at the tumor.. The patient lies on a moveable treatment couch and lasers are used to make sure the patient is in the proper* position. Radiation can be delivered to the tumor from any angle by rotating the gantry and moving the treatment couch. Science over.

*the patient is also pinned in place by their mask, which Laura did say is subject to shrinking and may therefore get tighter! Oh goody. Since it was only 10 minutes I thought I'd be fine, but a quick look in a mirror showed that my giant forehead looked like a meshed potato.

Only 34 zaps to go.

Friday, 8 January 2010


Question, is it:
a) a technique for attaching clothes to an external drying line;
b) a memory technique to help prompt yourself in presentations;
c) fitting a tube directly into your stomach for feeding?

Answer. All three. But I'm not putting it here because I've been hanging washing out or practicing a speech, its because after ironing my face when I got home, I got a call from the Western to confirm that they had a date for me pegging. Oh great, I thought, I was hoping that they'd decided I wouldn't need it since I've been a model patient.

Dream on...peg, or feeding tube it is for when my throat complains and I potentially can't swallow. Need to keep my weight constant you see, so that my mask is nice and tight.

So two nights in next week while they check me out then staple this thing into my stomach and teach me how to use it. Wonder if it'll be OK to slip a glass of wine down with my liquidised steak?

Meshy business

Well, after mask fitting its been all quiet on the Western front, until this week when I enjoyed a spot of simulation with three nurses whilst pinned down to a bed.

I'd thought it was just going to be a quick lie down with my mask on whilst I was introduced to the Zappatron 6,000 and they checked that it would hit the spot marked X, but no, its more scientific than I'd realised!

Yes, it did feature my very own mask, but rather than wheeling in the Zappatron - it was all done with lasers, new stickers for my mask and coloured felt pens! My quick overview told me that this would be the longest I'd have the mask on; 20-25 minutes! and that they'd leave me in the dark whilst they moved the bed around to get me lined up accurately, and "you might find the mask quite tight". Spot on.

At first I was back to thoughts of suffocating, but decided to appear brave and as breathing through my mouth was possible I gave them a them a thumbs up to proceed before relaxing to Fleetwood Mac (Rumours). Gradually I was spun, calibrated and had my nose drawn on as they marked up the mask and chatted odd numbers - yes, 10.2 to 10.4? Agreed. And, the bed was on the move again...

Wasn't too bad on reflection and me and my mask were then taken to the place I've to report to on Monday for the real thing. Her parting shot was not to be too concerned if I looked in the mirror soon, as having the mask on for so long leaves a nice mesh effect for a while!

Next it was upstairs to see the dentist who confirmed that I did indeed have a meshy face and cleaned out the small cavern left by my multi-molar extraction.