A little island of calm

They say that you really shouldn't consult Dr Google. "Everyone is different," they say; "your symptoms won't exactly match," they say. Generally that's true and you can easily google you cold and flu symptoms and go away convinced you have a combination of Ebola, H5N1 and Choleric Humours in the Spleen.

However after checking out some very serious studies from the likes of Johns Hopkins, Oxford University and the Khazakstan Institute of Horse Medicine* what they tend to agree on is that with my diagnosis you humble dragon is, quite frankly, toast. The 5 year survival rate for any kind of liver metastases is around 6% and I've got quite a few of the little bastards. Also Mrs Tiger had a chatette with primary cancer angel who admitted the main reason they are not going to operate on the bowel cancer is "quality of life" - which is cancerspeak for "you've got precious little time left, the last thing you need is three months recovering from major surgery".

So there you are. Most likely I'll be in a box inside of two or three years**.

Now how exactly are you supposed to react to that kind of thing? 

You'd think floods of tears, raging at God / The World / Fate / The Invisible Pink Unicorn (PBUH), rending of clothing in twain and the like wouldn't you? Well it turns out not. I'm just completely calm about the whole thing. I'm not in denial, I know its going to happen but I feel... nothing; no anger, no fear, no frustration, nothing. Maybe a little wistfulness that it might have been nice to be pottering around weeding the brassicas and showing Welsh mountain ponies when I was 64 but that's about it.

It's a bit bastard wierd I can tell you.




* Note sure they were very useful, it said I probably had worms.
** I'm a dragon, you'll need a bastard big box; better get planing that wood now.

Patching up the dragon

As you probably read in the last entry things took a turn for the serious and with the liver issue my guts surgeon Mr C can't take the primary bowel cancer out as it would cause too many problems with the liver, so the liver mets need bringing under control first. This however causes a bit of a problem as the primary cancer will most likely continue to grow and could end up blocking the colon.

Apparently this is "bad" and would involve flashing blue lights, emergency surgery, intensive care units and nurses and doctors looking at each other meaningfully over my bed just like in Holby City. So to avoid that scenario the doctors are going to put something called a "stent" in. Here's what they look like:

Fig 2: Medical chicken wire

As you can see its basically a medical-grade chicken wire tube. Now they don't need to operate to put these in so on tuesday I get a call from the hospital to come on up to the endoscopy department the following day and they fit my new tube and have another crack at the biopsy at the same time. "And you don't need to take the picolax and fast for two days first," they say

Hooray!

"You will need an enema though, two actually"

Boo!

So two weeks after the original diagnosis I'm back in Endoscopy and a very nice nurse is shoving a tube up my bum. "It should take between two and five minutes to work," she says "and the lavatories are just outside on the left and ri..."

"IT WON'T TAKE TWO MINUTES!"

So on Monday the bottom fell out of my world. And on Wednesday the world fell out of my bottom. Twice

Anyway after that I had a quick chat with Dr D who had done the original colonoscopy who gave me the run down on the procedure and asked me to sign the "consent to poke dragons with sticks" form and in I go, they pump me full of pethidine and some sort of sedative and this time I fall right asleep - I have vague memories of waking up and trying to get up only to be told "Here have some gas and air", biting down on some plastic mouthpiece and some pain but it was all a bit woozy to be honest and afterwards Dr D said it had all gone well so I guess I hadn't trashed theatre after all (always a potential hazard when operating on fire breathing irritable reptiles that).

They kept me in for the rest of the day for observations, especially as I was now "the man who had the Entonox" and there was talk of an overnight admission but good progress (and probably a lack of beds) meant I could go home in the early evening.

So here I am four days later. It's not all been plain sailing as I keep getting cramps in my guts and it would be unwise to stray more than a few metres from the bog but it is starting to settle down so with any luck that's that bit sorted.    

They'd better have got this bloody biopsy right this time!

Our Survey Said...

You're probably wondering why I haven't posted for a bit given that I was going in to get my results on Monday. Well that's because if you remember the old game show "Family Fortunes" it went something like this...

"So your answer was 'It's an easy cancer to fix with surgery and a spot of chemo', our survey said..."


This is me we're talking about here. I don't do straightforward.

You know something is amiss when you turn up for your appointment and the nurse says "OK Who's here to see Mr C" and four of you stand up only for you to be swiftly whisked to one side by Angela, my red-uniformed cancer angel, and lead to a seperate consulting room where you come across Lena, another red cancer angel, who is breaking open several boxes of industrial strength Kleenex.

So after a moment Mr C the guts surgeon rocks up and the first thing he says was "well I'm afraid your scan wasn't clear". I thought that meant they'd got a blurry picture and needed to take it again but apparently this is a new piece of cancer jargon and really means "you've got other stuff"

The "other stuff" turns out to be secondary tumors, or "mets" in the jargon* and they're in the liver. Now apparently this isn't too uncommon but in my case there are several of them and they're spread over both lobes of the liver... here's a liver so you can see what it looks like

Fig 1: The Liver (this bit is bolloxed as well)

It seems that the liver is a very clever thing and as well as tasting great with onions and mash it can repair itself even if you hack 70% of it away, and normally that's what happens with liver secondaries if you've only got the one. Unfortunately that isn't an option for me so they're going to have to try and shrink the mets with chemo first and then see if there's enough liver left to save. And they can't do that right now as they need another biopsy as the first one was "inconclusive" - which either means that the cytology guy get my sample mixed up with his lunchtime yoghurt or they can't work out why a cancer that only affects large fire-breathing reptiles is inside a human (damn my disguise, it's just too good)

They say you should take along a list of questions to these meetings and I did have one but it was all about surgery options and stomas. That list went right out the window when he said "I'm sorry, the bowel cancer isn't operable, I can't cure you with surgery right now." What he can do however is fit a stent around the cancer to keep my colon from blocking and they'll do the second biopsy at the same time. So that's the subject of the next post.

Oh yes I did ask the stupid cancer patient question "How long have I got." They don't answer that any more it seems but the strong steer I was getting was "I wouldn't invest in any ISA products if I were you."




* there will be a test on cancer jargon at the end of the month so do pay attention. Especially you at the back of the class.

Buzzword Bingo

Well not a lot of progress this week from my perspective but today is the day that all the clever doctors and consultants get together, drink tea and eat biscuits, and shuffle through the newcomers to the cancer rollercoaster's scans and biopsies and decide just how screwed you are and how best to treat you.

This being the brave new world of management speak these people are "The Multidisciplinary Team" and no doubt they will be "creating holistic care pathways" that will result in "positive patient health outcomes" whilst remaining "true to core clinical values and in keeping with our community health centred ethos; now sit there and we'll play you some whalesong"

I think they're missing a trick. They should call themselves "The Funky Tumor Prodding Squad"

They'd better get me an appointment with them soon as I'm running out of fingernails here.


UPDATE: Abut 10 minutes after posting that the hospital rang, I've got thr first appointment on Monday.

Radioactive metal doughnuts

Sunday, ah we all like sundays. Stroll to the shop, read the paper, roast dinner and an afternoon snooze.

Well you might have but I didn't. Sunday found me back in hospital as for some reason that's when my CT scan was scheduled - rather a surprise as I figured the NHS wouldn't work weekends. The hospital was a bit of a strange place on the weekend, none of the frenzied activity when I was there the previous week for the colonoscopy, just a few people milling about and of course nobody on the reception at the CT suite.

The Radioactive Doughnut of Doom
(your actual NHS model might be a bit older and more tatty)

However after tem minutes or so someone rocked up and I was sat down with a big jug of water and told to drink it slowly over the next hour. They didn't tell me what it was but being of a scientific bent I figured it was some sort of barium solution or something similar. I was rather expecting it to taste foul but it just tasted of water. I was surprised how busy the CT suite actually was with a steady stream of people from the wards and A&E trundling through for scans including one poor old sod who was having a full body scan "so we can see what's making you go all wobbly Mr Smith" - honestly if* I ever get old and they patronise me like that they're going to get both nostrils set to "crispy"**.

Anyway after an hour of glugging my show up on the machine drink and chatting to Mrs Miggins and her sister who'd come in for a look at her dicky bladder it's my turn in the doughnut of doom. Again, as seems to happen these days every time I enter the gravitational field of a medical professional, they stick a needle in my arm but this time it's connected by a long spiral tube to a pointy-nosed drug dispensing robot. This was easy according to the technician working doom doughnut as I have "good veins". Well at least there's something on the dragon that works.

So after that the tech dissapears and the doughnut of doom slides me into itself, whizzes its internal mechanism round for a quick look and then winds itself up into a spinning frenzy like a cross between the Stargate off that show on the Sci-Fi channel and my washing machine on a fast cycle; an american voice tells me to hold my breath and then I'm shot through the machine. This happens a couple of times and then the beast starts to spin down (without having fired me to the far reaches of the galaxy to do battle with the Goa'uld - bit of a dissapointment that) 

So that was that, relatively painless and the scan itself was done in a few minutes.

And now it's back to waiting.

There seems to be a lot of waiting.



* big "if" at the moment I guess
** I can breathe fire you know, proper dragon here, not like those wussy Chinese ones that just make it rain.