Not so happy new year

Well I did say I was going to try and have Christmas and the New Year off from hospitals, poking and the like but as Edmund Blackadder once observed "The path of my life is strewn with cowpats from the Devil's own satanic herd!" and I never made it to the early January regular appointment.

The Ascites and the pain associated with it got worse... and worse. Managed to see the GP just before Christmas and he got me onto Oramorph, a liquid form of morphine which is stronger that the semi-synthetic opioids I've been taking and that just about got me through the Xmas bank holidays although my Christmas lunch was a tiny bit of turkey and stuffing, a roast potato and a very lonely pig in blanket. Big, jolly spirit of Christmas Present I most certainly was not. By the Wednesday thing were starting to get even worse, food was becoming almost impossible to eat as anything above a couple of mouthfuls was coming straight back up, unlike at the other end where nothing was coming out. The "Emergency Oncology Number" at the hospital was about as much use as a chocolate teapot; they seem fine when you're actively taking chemo but all they came up with after some faffing around was "you should go to A&E"

Now I'm of the old school where you go to Accident and Emergency when your leg has been torn off or your heart is trying to exit your ribcage with a vengeance. Sure this was bad but not an emergency so I just put up with it for another night.

Probably not that smart. In the morning put in a call to the GP

"Hi I'm one of Dr H's cancer patients can I have an appointment?"
"Can you be here in 40 minutes"
"Yep"

So much for the wait for 4 weeks for an appointment*

However Dr H is in a bit of a bind, it's obvious I need something doing to drain this fluid but he can't book me into anything as he can only send me to King's Lynn who don't know me from a hole in the ground and there's no clinical notes or from Cambridge. So he sends an urgent fax (yes fax, this is the ultra-modern NHS) to the oncologist and will call me back. In the meantime here's some slow release mophiene

Following morning I ring them, nope no reply yet and then around 4pm he calls me. "Not heard anything, can't contact anyone, looks like they've knocked off for New Years Eve weekend. Do you think you can cope?"

I catch a glimpse of myself in the reflection from the kitchen window, sunken face, staring eyes, dehydrated and grimacing in pain. I look like an extra from a George A Romero zombie movie.

Fig 12: "Draaaaains"

I'm a proud, maybe stubborn dragon but I need help.

"No"

"Leave it with me."

Two hours later I'm in the Medical Assessment Unit at the Queen Liz II, ripped to my wingtips on painkillers, IV fluids going in and booked in for a drain in the morning. I'll gloss over the next 48 hours as that's a blog post on its own but by the end of New Years Day I'm back in the lair and 5.5 litres of yellow peritoneal gunk lighter.

So a week later having had a rocky road back to something approaching vertical that appointment with Dr A comes around so off I go back to Addenbrookes.

And this is where I got the news that I'd kind of being expected and that I wanted to let everyone know about.

Basically, your winged friend is toast.  The cancer has spread to far and I'm too unwell to receive any more treatment for it as it'll just be counterproductive. So although it seems to be the word they don't use any more my condition is now terminal.

Dr A was excellent throughout, just as he has been for the last three years. I really could not have wished for a better consultant throughout this whole drama and yet again he was up front and honest about timescales.

We are looking at weeks.

As long as I'm comfy as possible I can take that. And they are working very hard at comfy - more on that to follow.















* Although saying the magic C word doesn't half shift things along.

The Problem With Experiments

Science proceeds through experiment. You have an idea, sounds like a good one, the theory checks out but the only way you're going to be sure is to run a few tests and get some results. And sometimes the idea turns out to have been...

We have lift... oh.

Wrong

And so it appears to have been in the case of my new super wonder drug trial as after all the scans and pokeage results came back in the conversation went something like this.

"Well it hasn't had a very good response. In fact it's grown. It's now in your peritoneum, you've got ascites and we found a blood clot in your lungs."

"So nothing at all then?"

"No"

"Not even a mix up in the lab and you've accidentally injected me full of duck serum and I'm going to be able to call myself Captain Quack and fight crime with my amazing beak powers?"

"We can refer you to psychiatric services if you like Mr Dragon."

But that's the price of progress, I guess that they'll get some results from the tests and maybe work a way of giving the drug better or maybe it just doesn't work with my particular genes. At least it's not made me worse as the disease has just progressed as it would have done anyway.

And unfortunately progressing it is. I'm now on constant medication for pain and blimey don't you know if you miss a dose as most of your internal organs immediately kick up one hell of a fuss. And that ascites thing, which sounds like it ought to be the name of some ancient Greek king who was punished for walking in on Zeus when he was having it away in the form of a swan but is in fact an accumulation of fluid in the abdominal cavity, is making eating somewhat difficult. Everything sort of pushes against each other so I feel like I've had a massive roast dinner after only eating a slice of toast. On the plus side though it does mean I have to eat very high calorie foods, loads of full cream and butter type stuff that doctors tell you to avoid.

And the blood clots? Well that'll go away on its own apparently but a bit like self service checkouts your dragon now has to stick a needle in himself every day with a shot of Dalteparin, an anti coagulant drug they normally give to people with DVT, to make sure it doesn't come back

So anyway I've decided to take Xmas and the new year off from hospitals as quite frankly I'm pig sick of the places and I'm curling up on the sofa for a couple of weeks. I'm back to see the docs in early January and there are other things we might be able to try but I'm wondering of it's getting to the stage where rather than buying more time I'll be concentrating on buying more comfort instead.

Which suits me. I like comfortable.

Life at the bleeding edge

So as you know I signed up for this research trial a few weeks ago and now here I am, set in a very quiet research wing of the hospital on a Saturday afternoon fiddling around with the sticky pads on my heart monitor leads which occasionally fall off and make the machine think I've gone into ventricular tachycardia. This has an interesting reaction as the monitor is a telemetry one and every time it gets fooled into thinking I'm dying an alarm goes off and two or three nurses pile through the door expecting to find a dragon having a heart attack instead of one sat up in bed watching The Apprentice on catch-up and eating biscuits.

In order to get here I've had to go through loads of blood tests, PET/CT scans and a liver biopsy which let me tell you, despite plenty of local anaesthetic, hurts a whole lot. But all the tests are good and now I get to take the new wonder drug which is administered 10ml at a time for a whole week essentially by the same method as the 5FU chemo drug I've been on since this bastard rollercoaster ride started. The side effects aren't too bad so far apart from the first night when my guts decided there was a quantum singularity inside me and they were damned well going to collapse towards it. There's a tingling in the hands and feet too, bit like the neuropathy of Oxaliplatin but not temperature sensitive. Unfortunately that seems to be spreading up my arms so I'm not sure what's going on there.

But the good (probably) news is that I'm on the maximum dose for the trial so it should (again, probably) have the best effect. We won't find out though until the middle of next week when I get yet more positrons and, oh joy unbounded, yet another liver biopsy.

It's also a bit dull in here to be honest although all the staff are really friendly. Mrs Dragon comes to visit most days and we've set up Skype so we can chat but I did find myself earlier using the remote motorised bed control to raise the head part of the bed whilst humming The Thunderbirds theme song so I might be getting a little bit of cabin fever.

Fig 43: Thunderbeds are go!

They didn't mention that in the side effects. 

Guinea Dragon

Well that's the chemotherapy done with. No more nausea, no more not being able to poop for 72 hours because of the stuff they give you to stop the nausea and, best of all, no more of that bastard 5FU pump. Turns out that the Dount of Doom has revealed that not only has the cancer in the liver grown (only a few millimetres) but The Grouchettes have had "musical differences" and some of them have decided to form The Continuity Grouchettes and have got a gig in my lungs. Fortunately they're just tuning up and trying to work out what key to play in right now so there's no symptoms but it's a big hint and a half that the chemotherapy just isn't cutting the mustard any more.

There is a newly approved drug, Lonsurf, that I could take but my oncologist isn't too keen in my case as it's just a variant on how the current chemo drugs work (basically messing with their DNA to stop them dividing) and he says it's probably going to give me a couple of months extra if it works at all. So not so great.

However he thinks, and I tend to agree, that an immune system fiddling drug might work better and there's a lot of research going into this area right now as it's showing a lot of promise for treating cancers of all sorts and given that I just so happen to be being treated in one of the world's premier research hospitals then I figure signing up to a trial of something shiny and new might be worth a go. And duly a week later I'm sat having a chat with a very bubbly doctor who is explaining one of the trials they have. Basically it's a test of an existing drug they give to people with lymphomas to make them produce and mobilise stem cells that they harvest before zapping the lymphoma patient with enough chemicals and radiation to screw up stem cells, then they give them the stem cells back.  However in some lab and animal tests it looks like given differently it can cause the immune system to go crazy ape bananas and start it scoffing cancer cells like chocolate chip cookies.

Sounds great, but what are the downsides. Well for a start these trials are pretty early stage stuff, what's know in the business as "stage one" and used to basically see what sort of a dose of whatever it is is safe to give to people without limbs falling off or their skin going all scaly like in the superhero movie Deadpool.  They do this by "dose escalation", a few people get a low dose and they see if anything happens, then the next few people get a higher dose and so on. So it could be that you're not getting enough of this stuff to make the slightest bit of difference and of course there's always the chance that despite this stuff working on models and in mice when you stick it into dragons the square root of sod all happens.

The other goodie is that they need to keep a very close eye on you so you're in hospital for a while and rigged up to heart monitors for the 7 days the drug is being administered. Oh and that's constantly through a little pump.

And you need a liver biopsy. Two in fact. And the usual PET / CT scans, MRIs, donating half a litre of blood in samples that seem to go with anything cancerish.

But it might just do something and that's got to be better than sitting around in November not doing a great deal and just letting the little bastards grow.

So I'm going to sign up and become a guinea pig. Or guinea dragon in my case.

Wonder if I'll get a wheel to run around in?

They just make you worse.

So what if I haven't written much lately, neither has Shakespeare.

But I thouht I'd better post a bit of an update for you folks who keep up to date via the blog rather than my Twitter wibblings. At the moment I'm on another chemo break and tapping this in whist sat in a cottage in The Lakes waiting for the rain to stop so I can go for a walk up a mountain. From this you can gather two things, vis:

(a) I am still well enough to go mountain walking
(b) The chemo has stopped working so they're giving me time off to work out what to do next.

The chemo hasn't stopped working as such but there is a bit of a problem with it. Well OK quite a big problem as it happens in that I've become allergic to one of the drugs in the cocktail. This isn't a case of allergic in the "I get a bit itchy and sneezy" it's more nurses hitting alarms, oxygen masks and so many steroids being pumped into me I could give Bradley Wiggins a run for his money going up Mount Ventoux.  You may recall that I started having issues of this nature earlier in the year with Oxaliplatin which was stopped in favour of Irinotecan and then I had the problem with the "infection"
during the first cycle of the Irinotecan.

Well that wasn't an infection.

Turns out the villain of the piece is the drug Calcium Folinate. Now this isn't actually a chemotherapy drug something they give you to make one of the chemo drugs, 5FU, work correctly. We originally thought Oxaliplatin was to blame as the Folinate is given at the same time and, well, can't be the Folinate can it. On the Irinotecan it's given separately but again we were thinking it's a delayed reaction, or an infection, or it's because you're a dragon; anything but the Folinate. 

Eventually after yet another crash in the day unit we are starting to home in on the culprit chemical and I get a load of steroids and anti histamines before we start which works for cycle 4 but come cycle 5 after 20 minutes I've fighting for breath and my oxygen sats are somewhere below the "Would you trust Donald Trump to look after a goldfish" poll ratings. Cue oxygen, loads more steroids and after a while I'm at least not looking blue.  Then I hear "The on-call registrar says give it thirty minutes and then start the infusion again."

"The poor bastard who keeps getting poisoned says you can stick your infusion where the sun doesn't shine!"*

So that was that. I am disconnected, no point giving me the 5FU and I can go.  Just to be on the safe side I lurk around the hospital for another hour which was a good move as I started to get that uncontrollable shivering thing again (which was making drinking my latte in the hospital branch of Costas quite difficult) but that went away quite quickly so off home I toddled.

But that was it I was told. No more Calcium Folinate and that means no more 5FU. Quite honestly I'm rather relieved as after 40 plus sessions I was really starting to hate that bloody 46 hour bottle thing but it does mean we've lost probably the best toy in the toybox for my condition. Current plan is to wait to see what last week's spin in the Donut of Doom reveals and then consider the tablet form of 5FU called Capcitabine which apparently doesn't need the Folinate stuff to work but does bugger your feet up good and proper.

Which is why I'm in The Lake District climbing up mountains now.

Or I will be once it stops pissing down.









* I was very polite really.

And then all my hair falls off

"And then all my clothes fall off..."

fig 34: in the best possible taste

Well OK my clothes stayed on but my hair fell off.

I've had the chemo drug Irinotecan before and while they say that hair loss is a possibility it's never been a problem for me before. Sure it thinned a little bit and grew back a bit haphazardly but my nice thick and quite long hair was still there.

Not this time. A couple of days after the Irinotecan infusion my scalp started to feel quite sore, like someone had been tugging at my hair. Soon as I touched it loads of strands just came away in my hand. And over the weekend it got worse, whole clumps start to come out and  by Monday morning I look like a cross between a mangy fox and the guy with the bad comb over in that Hamlet advert

fig 58: unhappiness is a drug called Irinotecan

Yes seriously that bad, I looked awful and I'm still shedding bits of hair everywhere like a moulting dog and I seriously hope these drugs are messing up the cancer as well as they're messing up my follicles.

So drastic times call for extreme measures and so I go into town, find an old fashioned stripey pole barbers shop run by a sixty odd year old guy whose Teasy-Weasy skills begin and end at "number two on the sides and half off the top" and ask him to cut the lot off. Which he does.

Excellent, now I look like a particularly scruffy toilet brush.

However after the purchase of a new razor and a few minutes scraping in the bathroom I now have a nice smooth head. And to be honest I don't think that it looks too bad Sure it's not good and I preferred having hair but it could be worse.

I could have that comb-over.

Infected

So after the news that the liver mets have ganged up on me and formed one big one the time comes to see if we can do something about it and quite frankly not a moment too soon. Over the past couple of weeks it's becoming increasingly painful and I've decided to step up to the opiate painkiller Tramadol more or less full time. Now Tramadol is at the, as one of my friends puts it, "opiates for girls" end of the spectrum of fluffy clouds and pink unicorns narcotics but even so it does mark a bit of a sea change in managing the disease.

But anyway onto chemotherapy. FOLFIRI this one is called and you may recall I've had it before and so last Wednesday late on in the day off I trek to the day unit at Addenbrookes and off we go. There's a bit of a false start when the nurse is convinced she's got the gripper needle in my port but as soon as she flushed it I got a searing pain so I'm convinced she's missed. But no worry, new needle is sorted out and off we go. So we thought.

Anyway everything is going peachy,, irinotecan goes in no problem, right up until the end of the calcuim folinate bit when I start to feel a bit cold and shivery. Now the air con in there can be a bit random so I just put my jacket on but I keep shivering.

And keep shivering.

After five minutes I'm shaking so hard I look like I'm having some sort of fit, my oxygen sats are down at 91% and my blood pressure is so high you could use it to operate hydraulic machinery. At this point the on call doctor is summoned who recognised me from the last set of oncology wobblyness and he thinks I'm having a reaction to the Irinotecan whereas the nurses think it's an infection. If it was a reaction it was certainly not like the one I had on Oxaliplatin which was quite a classic anaphylaxis one and personally I'm not convinced it is, especially when the usual hydrocortisone / chlorphenamine does diddly squat and my temperature is now heading north past 38.5C. It's not colinergic syndrome either which is one of the things Irinotecan can give you.

There's a bit of round the houses backstage and conversations with the on-call consultant and I'm asked if I want to carry on and then go home with a few antibiotics. Now the dragon's lair is quite literally in the middle of The Fens, at least 25 minutes from the nearest ambulance station* and a good hour from the hospital so I'm not exactly keen on going into neutropenic sepsis under those circumstances so after huge doses of IV antibiotics and blood cultures being taken it's decided I should stay the night at the Hotel Addenbrookes who, miracle of miracles, have a bed free!

Anyway to cut a long story short a couple of hours later I start to feel better and after a night of "rest" (only disturbed by every single beep, buzzer, bell and thing that goes "ping" known to medical science) I'm feeling a bit like my scaly green self again and after a thorough check over and even more antibiotics I'm hooked up to the 5FU pump and set loose into the world and everything proceeds as well as these things ever do (fatigue, nausea, constipation, evil humours of ye spleen, etc)

I did get my discharge notes through the post today and although the blood cultures weren't back the white blood cell count was elevated above normal and the doctor's summary was it was an infection of "unknown origin". If you remember back at the beginning of this we had a bit of a problem with the port and at the time the nurse was thinking that maybe as it hadn't been accessed in a month there may have been some infection in the line that's got dislodged but I suppose we will probably never know. Either way if it is an infection that's kind of good news as it means I'm not allergic to yet another chemotherapy agent and I can keep getting treated.

And finally with my public service hat on if you are a chemo patient reading this I know they tell you all about infection and to ring them if your temperature goes above 38 but do heed them. Mine went from "why am I a bit shivery" to "oh shit this is looking serious" in the matter of 30 minutes so please don't hang around and wait for it to get better, because odds on it won't.









* we tested this some years ago when me and my 16.2hh mare parted company at speed