Rough as a...

Oh just mild tingly fingers, hadly any side effects at all...

... yeah right, last two days I've felt as rough as one of these.

Fig 12: A Badger's Arse

Don't get me wrong, they dosed me up on loads of stuff to stop the chemotherapy induced vomiting and to be fair that all worked. My stomach did a few backflips but no nausea or vomiting, whoopee. But then the hiccups started.

Hiccups? You're complaining about hiccups? What sort of a wussy dragon are you?

OK now you have hiccups for 12 hours straight, hiccups that even when you can stop them start again and wake you up, hiccups so violent I've wrenched most of the muscles in my ribcage and put my right shoulder out. Oh and the fatigue too. Basically not a whole heap of fun which is why rather than being a busy bee I'm sat here on a Saturday afternoon just soaking up some sunshine.

Now like me you're probably thinking this is some wierd chemotherapy side effect. Well it seems not; it's a side effect of the drugs they give you to counteract the chemo, in this case dexamethazone, and this isn't from one of those "nasty big pharma just want to poison you and take your money" tinfoil hat websites but a peer reviewed medical journal: http://www.ncbi.nlm.nih.gov/pubmed/19276142

Seemed to work too as I skipped the final dex pill and 12 hours later, no more hiccups. Yay!

Hopefully I can just forego the dexamethazone next time with no ill effects but there is a alternative (hooray for Google, we're all clinical physicancs now!) called Aprepitant but it's not normally prescribed as it's more expensive.

They will be prescribing it to me, I assure you <hard dragon stare>

Seconds away. Round one

And so it begins, cycle one (of twelve) chemo sessions are now under way. Yesterday basically involved sitting on my tail for five hours whilst various bags of alternating normal and noxious chemicals were attached to my shiny new PICC line via the machine that goes "beep"

Fig 32b: The Machine that goes "beep"

Said machine is there to control the speed of administration of the chemicals but it does still require a bit of human intervention as when the bags of fluid run down the machine that goes "beep" beeps its low flow alarm and the drip bag needs a jiggle. After about eight or nine times of observing low flow bleeps I did ask the nurse if she wanted me to override the machine that goes "beep"s screen lockout*, stop the flow, jiggle the bag and press "resume" when it happened next time..

Apparently dragons are not allowed to touch the machine that goes "beep". Ever.

Mrs Dragon came down to the hospital to pick me up (because you're not allowed to drive straight after this stuff as it can have nasty side effects) and we both got the detailed burble on possible problems and a nice emergency card for my wallet that says "you have an hour to save this dragon's life - fill him full of IV antibiotics".  After that they connected me up to my Flourouracil pump.That's my slow release chemotherapy drug that rather being pumped in at 125ml per hour like the rest ges in over 46 hours at a sedate 2.5ml per hour and rather cleverly uses a tiny little mechanical pump attached to my PICC line that works off body heat which I thought was ever so clever. The drug itself sits in some sort of medical balloon inside a sealed plastic container that I wear in a bum bag for the next couple of days. It's protected in this way as this stuff is officially labelled as "bad"

It's so bad that we got issued with a cleaning up kit that you'd normally expect to see when cleaning up Chernobil. There's some sterile stuff for sealing up the PICC line but then two double thick bags for putting the drug reservoir in plus any clothes that it got spilled on. You then put all this in the issued bucket, seal it and take to the hospital where it gets thrown in the incinerator alongside all those terminated fetuses the anti-abortion brigade were getting their panties in a bunch over this week.

Anyway that all done it's now 7pm (these are long days!) and I get to go home. It had got chilly in Cambridge by this time so on the walk from the hospital to the car park I got my first side effect symptom, my ears, nose and fingers all went tingly, like snow was falling on them; it was quite nice actually for a couple of minutes.

Mrs Dragon says its called "peripheral neuropathy" and I'm not allowed out in the cold for the next couple of days.




* using a highly sophisticated hacker's method of pressing the "screen lock" button on the back of the unit.

PICC that up.

Things are definitely moving forward now, I'd like you all to meet my new friend, Mr Groshong

Fig 12: Medical stuff

 

In case you're wondering that's a PICC, a peripherally inserted central catheter; the red and white thing is the end of a small tube that goes up a vein in my arm to a tiny valve that's positioned just above my heart. The purpose of this is to make getting all those nasty chemotherapy drugs into me just that bit easier as it stays there until the end of treatment and means every time I go in I don't have the YTS trainee searching for a place to stick a needle. 

I did get a book of instructions with it but they're mainly for the professionals. The patient care bit basically has the same instructions as the mogwai from "Gremlins". Don't get it wet.

Not sure what happens if I feed it after midnight though.

FOXFIRE update

As the machinery grinds ever closer to actually giving me some treatment for this bastard disease I had to go and have another bunch of tests this week including the inevitable blood tests, measuring my height (why do they do that, does cancer make you shrink or something?) and another spin in the donut of doom. This second spin was so they can get a close up look at where the pesky little liver mets are and also to do a "how cancerous is your liver" test because, according to the consultant, if you've more cancer than liver they can't let you on the trial.

Whilst I was there said consultant went through the gory details of what, if I were allocated the treatment group, I could expect and what could go wrong. It seems at best after each dose of the radioactive spheres patients feel like "they have the flu for a few days" and a few other symptoms too all of which I kind of recognised being a child of the 70's and 80's and growing up with that cold war "Protect and Survive" leaflet.

Basically every month they give you radiation sickness. Whoopee!

And that's just the normal stuff, the "well if it goes wrong / you react badly" bits are even more fun ranging from pancreatitis right through to this irradiating your entire liver which, with classic doctor understatement, was described as "life threatening". You don't say.

Ah what the hell, if I don't do this I'm not going to see my next birthday so I signed all the consent forms and went into the randomisation process. And just my luck... I got allocated the treatment group!

Unfortunately this is a bit more delay as they need to co-ordinate chemo and radiation and to do that they need the specialist radiologist who has to guide the tube delivering the stuff to my liver using an angiogram so he needs to be scheduled. Long story short I'm pencilled in to kick of cycle 1 of chemo on the 31st of March.

Here's to glowing in the dark.

UPDATE
Due to some admin juggling by the wonderful trial secretary Amy things have moved earlier so I'm in for PICC line insertion this coming monday, first cycle of chemo on Tuesday (expect projectile vomiting and curses in Ancient Draconian), a week later I'm back in for angiograms to check the hepatic portal vein doesn't have any strange offshoots (and to close them off if it does) and then on the 10th I get radioactive balls.  What larks!

Buckets

One of my friends and commentator on the blog (hi Dragonboy!) mentioned bucket lists a little while back and a couple of people offline have also brought the subject up.

No Lolrus, not that bucket

So what's a bucket list? Well simply it's a list of all the things you should do before you kick the aforementioned recepticle. A bit like those lists you see in the sunday papers when they're desperate to fill a few more column inches before going to press like "25 pretentious hip bistros you must eat in before you're 40" and "50 exotic locations you must visit and catch dysentry in before you retire"

So do I have a bucket list? No, I don't.  I could have one I guess. I've never been to Thailand. I've never been skydiving. I've never made love to a moose. I've never made love to a moose whilst skydiving in Thailand.  The thing is I've already done pretty much everything I can think of that I wanted to do. I've owned horses and my own equestrian property in the country* (and still do), fast sports cars and I even had an aeroplane once**

Piper Turbo Arrow (PA28 201-T) Mine was one of these

Add on top of that the travelling the world and staying in 5 star hotels (added bonus, my employer at the time was paying), hell I was even the keyboard player in a rock band at one time (we weren't very good but it was great fun).  So if I've wanted to do something I've always just gone out and done it and I was kind of looking forward to, well, throttling back a bit and maybe growing tomatoes and showing Meadow at the odd horse show

I am not an ornament. I am a free horse!

(and take this bloody Katie Price headcollar off me)

As a consequence then I don't have a bucket list, nor do I feel the need for one. However if anyone has a reservation at Heston's restaurant The Fat Duck they don't want I might be interested.

You can keep the moose though.




*Don't get too excited, it's 2 acres of reclaimed swamp down a crappy, potholed farm track. We're not talking Downton Abbey here.

** I'm the only dragon I know who actually has a pilot's licence.

Foxfire

It turns out that when you get a diagnosis like mine all this machinery you never hear about kicks into action. I feel like I've been twiddling my talons for the last month since the stent was fitted and nothing has been happening but, as I found out on Friday, there's been a whole load of meetings with liver specialists, surgeons, oncologists, firemen* and other professionals to decide how best to patch up your dragon here. This I found out when I met the first doctor who has actually given me a straight answer without resorting to obfuscation and unnecessary cancerspeak.

One of the first things he did was show me my CT scan - this was done about 5 weeks ago but nobody has shown it to me yet. All I could get was the liver mets were "serious" and there were "several", which when I looked at them on the screen is, to be fair, pretty accurate. There they were, dark grey against the light grey liver*, one... after... another. And they were big bastards too, 2 centimetres some of them and all over the shop. OK so even me whose only experience of surgery was playing that "Operation" game that buzzed if you touched the two metal bits together as a kid could see that you're not going to be able to resection that.

So that's the bad news. The good news is that given I'm this messed up but can still flap my wings I'm eligable as a candidate for the super-sexy sounding FOXFIRE trial - and yes it is all in capital letters. Essentially what this is is the kick-ass chemotherapy that they can give you for this (5-Fluorouracil, OXaliplatin and Folinic acid) but the added bit, if you're on the treatment group is "Interventional Radiotherapy Embolisation"

No that's the Russian plane Clint Eastwood stole in the film.

What this involves is them putting a line into an artery near the liver and injecting very small balls doped with Yttrium-90. That sounds radioactive doesn't it. That's because it is! It decays giving off beta radiation and the idea is that it kills the cancer cells in the liver and their blood supplies. It's not a cure but if it works should make things better for longer.

Now this is a clinical trial so there's only a 50% chance I'll get the radiation treatment but I'm cool with that; I'll get the standard treatment anyhow so signing up for the trial was a no brainer. OK so according to the blurb I've been given there's a 1 in 1000 chance this thing will kill me outright but on the other hand there's a chance I'll also get some great mutant superpowers like this:

A Firefox, yesterday.

... probably not.

We'll find out next monday.



* turns out they only need those for me.
* CT scans are in greyscale

Risky Business

So I have two weeks until my oncology appointment and starting any kind of chemo treatment and so, as I'm pretty much symptom free at the moment*, I was considering four or five days away soaking up some rays and getting a bit of heat into the bones. Now at this time of year there's pretty much only one place for that and that's Dubai. Only 7 hours travel, not too expensive, guaranteed sunshine and the local muslims aren't so rabid that you can't get a beer or two when you're thirsty.

So off I go to lastbargaincheapholidaysfordragons.com and there's a couple of decent deals to be had. Click, click, click I go until it gets to the "Add travel insurance" bit - well it's over a grand if I cancel and my E111** card won't work over there so I guess I better had.

Bzzzzt. Computer says no. You don't even need to have cancer, you just need to have been referred for ANY kind of scan or diagnostic test and they won't touch you. If, gods forbid, you actually have a diagnosis the underwriters just point at you and laugh. Well there are these other sites you see advertised, the ones that claim they will insure you even if you're missing a head. Well it turns out that, no, they won't. They'll cover you for a hulking great premium but only after you've been treated, not before.

I did discover one place, probably called www.deadmanwalking.com or something, that would take me on risk but only after filling in reams of paperwork, providing a letter from my oncologist***, getting special dispensation from the Dalai Lama that in my next incarnation I'll be reincarnated as at least a mammal plus, of course, a vast sum of money.

So I decided sod it. I've stocked up on coal, lit the fire and brought the sun-lamp down from the loft.

Someone bring me a Heineken.




* apart from the fascinating new experience of my right pelvis wanting to leap from my body every time I cough. That's a fun one.

** that's the thing that entitles you to free emergency treatment in the EU if you're a UK citizen

*** who I can just about get an appointment with let alone prise any documents from

Mac and cheese

A while back the red-robed cancer angel mentioned the Macmillan Nurses to Mrs Dragon as maybe able to give us some support; apparently I have to ask for the referral which I duly did and after a week our assigned Mac Nurse rocked up to the dragon's lair*

First surprise to me was that I always thought they were some independent charity; seemingly not as mine had an NHS id badge. The rest came as no real surprise, a basic bit of touchy-feely "so how do you feel"? cod psychology and about an hours worth of waffle on matters me and the Mrs has largely figured out ourselves. Well meaing I guess but helpful? Not really.

One god thing that came out of it was at least she gave the oncologist a poke (he'd been off on his hols apparently as I'm probably bottom of his in-tray) and so I now have an appointment in a couple of weeks. Hardly speedy but not too slow that I could kick up a fuss.



* we have lairs, not dens; don't believe everything you see on the tellybox.