Warp drive powered dragon

For some reason the liver team where I have my treatment have taken a bit of interest in me and have ordered up a bunch of new scans in interesting machines that I've not been in before so that they can have a proper look at the nasties lurking within.

The first one of these is a MRI (magnetic resonance imaging) scan. These clever things work by using a very powerful magnet to wobble the water atoms in your body in a precise way and measuring the very weak radio wave emissions they give off as a result*.

Fig 7. Magnetic clanky machine of doom

The procedure for this is first of all to make sure you've got nothing at all in your body that might be ferrous metal because these magnets are strong and would cause metal in your body to move about. The  magnetic field of the one I was in was 3 Tesla and to give you an idea the magnet that holds your fridge door closed is in the order of 5 milliTesla. Naturally you're not allowed to take any metal into the scanner so you're going to be standing around in your underwear and an ill fitting NHS gown for a while.

Also remember I said the radio emissions were weak? Well this means the antennae that detect them can't be far from your body so the tube you lie in is very narrow and you lie right inside the tube so this is definitely not going to be a fun experience if you're claustrophobic. Added to this they strap you to the table so you can't move and make the pictures blurry, Now I'm generally OK with confined spaces but after 30 minutes in here even I was starting to get a bit perturbed.

Oh yes and just to add some more fun for my scan you get a needle in the arm which is hooked up to a pump driver (the bit of kit on the stand in the left of the picture up there) so they can squirt chemicals into you at various intervals. And just to finish they strap another detector right above the liver and what can only be described as a dinner plate attached to a vacuum hose right above that, the purpose of which will be revealed later.

Now in order to get the water in you wobbling in just the right way the machine alters the magnetic field in controlled bursts and this causes small expansions and contractions in the gubbins of machine and this makes quite a bit of noise, so much that you have to wear ear protection. Now when Mrs Draunculus had one of these done privately a few years back she had headphones and got to listen to Enya. Mine's done on the NHS so I got a pair of those disposable foam earplugs. The noise this thing can only be described as a metallic clanging, buzzing, squeaking cacophony, kind of like being inside an early Einstürzende Neubauten gig. Added to this you have to hold your breath on occasions so the person driving the machine occasionally yells instructions to you via an intercom. For some reason best known to medicine you don't hold your breath in, you have to hold it out which is actually quite hard.

So after half an hour of being stuck inside this clanking, warbling Moog synthesizer gone mad the purpose of the dinner plate is revealed. It vibrates. I have no idea why it does this but apparently bouncing your liver up and down very rapidly is required for a couple of the scans. Personally I suspect that it's something the radiographers just do for a laugh.

So that was the MRI done and a week later I'm back for the next scan which is a PET/CT one. Now CTs you already know all about from the Donut of Doom posts but the PET, which stands for Positron Emission Tomography, bit is all new. This works as you might expect by detecting positrons, which are basically the antimatter equivalent of electrons. Now your body doesn't naturally produce these so they have to give you some which is done by injecting you with a type of sugar that's been dosed with a short lived radioactive molecule. Certain things in your body, like cancer cells, just love sugar and hoover it up, particularly if the patient is a dragon who hasn't been allowed to eat or drink anything but water for several hours (oh yes, they starve you before you get scanned for this one). Radioactive sugar is of course a bit tricky to handle so you get a cannula shoved in your arm and the glowing stuff** which comes in a special lead-lined syringe is ceremonially removed from a metal box and squirted into you.

Then you wait for an hour whilst the sugar is taken up by your cells and then you can go and get into the machine which is a bit like a regular CT scanner but with a longer tube you lie in. The scanner whirrs around and does a CT scan and then it starts measuring positrons. Now you can't directly observe a positron but if you remember Star Trek you'll know that the engines of the Starship Enterprise work by putting matter and antimatter together which annihilate each other and convert all their mass into energy*** and this is what happens when your positron, produced as the radioactive sugar decays, bumps into an electron but without the massive explosion above the Vatican or you achieving warp speed. Conveniently the energy produced is a pair of gamma rays which even more conveniently shoot off in exactly opposite directions so when this pair is picked up by opposite sides of the detector it knows its got a positron and where it used to be and by combining thousands of these events along with the CT image it can build a picture up of the tissues where the sugar was taken up.

And all you need to do is lie there for half and hour as you're propelled past the detectors a few centimetres at a time.

So that's the scans done. Now we have to wait to see what the clever surgeons and doctors make of them. Watch this space.






* I had to have two goes at my physics "A" level, you can tell can't you.
** It didn't actually glow, which was disappointing.
*** The bomb in very silly film Angels and Demons worked the same way

Update. Nothing is happening.

I know I've been neglecting the blog. Well one main reason is that nothing much is happening which in cancer terms is a good thing. The chemo has been trundling along as it should with no dramas or new weird side effects and the last set of scans showed no growth in any of the tumours. So all is at least stable and rather dull.

Dull is good, I like dull.

Anyway because I've been a good dragon and taken all my medicines I'm allowed a 4 week chemo break so this is getting typed up in the Emirates business lounge at London Gatwick from where very shortly a large aeroplane* is going to whisk me away for a few days in the sunshine before poking and chemicals start up again.

See you on the other side!


* It's a long way and I only have little wings so I get someone else to do the flying.

Busted

So I'm at the usual clinic on Monday and one of my oncologists goes "I think I found your blog, are you the little dragon?"

Oops! I had to do a quick think if I'd had a moan about the oncology team on here but I guessed not as they've all been top notch. In fact the only grumbling I tend to do is on Twitter when the clinics are running their usual hour and a half behind schedule. and you daren't go to the bog because you're paranoid about missing being called.

But it was nice to hear that the doctors like my blog and actually find it useful to get an idea of what their patients are going through and, especially the day to day stuff that doesn't tend to come up in clinics which tend, at least for me, to be a check on how the chemo side effects are going and making sure I have the requisite number of platelets, white blood cells and legs* to allow the next lot of chemo to get dribbled in the following Wednesday.

Which is what's happening now. And it's making my feet itch.



* Four. I am a dragon after all.

Liver and Onions

The liver is a funny thing, for such a large organ it doesn't have very much in the way of pain receptors so when there's something up with it it rarely tells you directly but presses on other nerves so you get the ouchies elsewhere.

Mine's decided to go for the "you've just been kicked in the ribs by a shire horse" nerves and also the "you've overdone it on the sun lounger" ones so it feels like I've got a very localised form of sunburn in a roughly liver shaped area. Now hopefully once the chemo starts working the grouchettes in the liver will shrink and it'll stop being painful but for now I've had to step the pills up a notch to Tramadol which is on the lower rungs of the opiate drugs. Fortunately these don't have too many side effects and I'm sure the fluffy pink unicorns I keep seeing will go away shortly.

On top of that the chemo isn't exactly going smoothly either. The last lot of Oxaliplatin got the day unit all flustered because as soon as it went in my hands and face went bright red and my lips did a reasonable impression of Mick Jagger - cue much anti histamines and steroids being poured into your dragon and then spending the next few days flat on my back with fatigue. They've dropped the dose for this cycle but even so it's a bit itchy when it's going in.

Still I really can't complain as I'm still here and according to the statistics I shouldn't be. If you go back to the beginning of the blog you'll see that this week is my second "cancerversay" and when all this kicked off I was given a couple of years to live if the treatment worked. Sure we're in the last chance saloon as far as conventional treatment is concerned but we're still here and sticking two fingers up to the bastard.

Going to put it up next year too

If you were around the blog last year you might remember my little aeroplane post http://littledragoncancer.blogspot.co.uk/2014_12_01_archive.html 

And yes I was here to put it up this year as well, here it is flying round the tree

Fig 7: What ho Biggles!

As to next year... well as you know it's not been the best of news of late and I'm back on the FOLFOX which I'd quite forgotten how ghastly it was but I'm prepared to give it a try and then after that there's other things we can have a go at so I've every expectation that a little biplane will be slipping the surly bonds of earth once more in 2016.

A very merry Christmas and a peaceful and healthy new year to you all.

The Drugs Don't Work

So we had a spin in the donut of doom the other week and on Monday I totter off down to clinic to get the results. You know immediately it isn't going to be cute puppies and gambolling pink unicorns news when you see the oncologist has the colorectal specialist red angel of death with him and he's got his best "now this is serious" face on.

Dr Ahmad does a very good serious face.

And indeed the news is indeed pants and about as welcome as Donald Trump at Friday prayers down the mosque. The mouse gene drug and capecitabine that had been at least holding the liver metastices in check have stopped working and they were growing again; not by much, just a few millimetres but definitely awake and doing that uncontrolled dividing thing again.

Fortunately it's not all doom and gloom as my records show I had a good response to FOLFOX, the first treatment I had, so I can go back and have a few cycles of that and see if it works again. Now as you remember from last year this is a coctail of Flouracil and Folonic Acid that's been common to all my treatments (side effects: nausea and vomiting, mouth ulcers, painful hand and foot lesions and probably making you think that Justin Beiber isn't such a bad musician after all) with platinum based wonder drug Oxaliplatin. Now that's the one that alongside all the ususal happy chemo side effect buggers up your nervous system in what's called "peripheral neuropathy"; it's like having permanent pins and needles in your hands and feet with the added joy of touching anything cold is agony.

Oh and I have to go back to carting a bottle of highly toxic chemicals with a tube sticking out of my chest for two days every fortnight. What joy.

Still it's that or in six months someone will be kicking a dead dragon into a hole so we sign the "yes you can poison me" consent forms and we arrange to kick off next week (which does at least mean I get Xmas off).

So not the best Christmas present ever but to compensate I'm on a train heading to London right now where I will visit swanky grocers Fortnum and Mason and go hog wild with the credit card. Eat drink and be merry for tomorrow we chemo!

Fig 67: Happy bunch of lads

Little pinky orange pills

So I'm back on the real chemotherapy now having been found out that we can't just use the monoclonal antibodies.

However the good news is that my new chemo drug is Capecitabine which comes in the form of rather large pinky orange pills which I take for 7 days and then have 7 days off. I have to say it's a lot easier than messing around with the 46 hour infusion of 5FU with it's attendant fatigue, nausea and having to schlep up to Wisbech on a Friday afternoon. "Cap" to its friends is rather clever in that it's a "prodrug" which means that in itself it doesn't do anything but the liver synthesises it into the active drug which just happens to be the aforementioned 5FU.

The only downside is the palmar-plantar syndrome which is quite a bit worse on the pill version of 5FU than the infusion. After two treatments my hands are starting to split, not badly but enough to be painful when it happens and I'm having to be a bit careful around the ponies in case of picking up infections. It's buggering up my feet as well so I do tend to totter around rather than walk when it gets bad but I'm still mobile.

Which is a good job as I've got a dragon to feed.

fig 35: Always feed your dragon fresh cake

She called Raptors Fire, likes cake and has her own Twitter account at @raptorsfire