Tuesday 22 December 2015

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.

Wednesday 9 December 2015

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

Wednesday 11 November 2015

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

Tuesday 6 October 2015

Maybe not all down to the mouse genes

So last week I trundle into the clinic as usual expecting the standard "ah so you still have a head and are breathing, you can have your treatment" rigmarole and to my surprise I get to see Dr A, my original oncologist.

"So you've had a break and when you came back you went onto just Cetuximab. Why?" he says

"Because Dr M your other oncologist said I had to because the Irinotecan and 5FU was going to turn my bone marrow into mashed potato or something." I replied. Not sure what he was expecting me to say "Oh yes, I took a medical degree and specialised in cancer treatment in the four weeks I was off and decided this for myself!"

Turns out that Dr M shouldn't have done that. Not for any clinical reasons you understand but because of the ludicrous rules of the Cancer Drugs Fund which cough up the cash for the Cetuximab. Now I'm none too keen to start back on the 5FU because quite frankly it's a bloody pain. The side effects are nasty and carting that bottle with a tube stuck in your chest around for 3 days is a pain in the arse quite frankly so I ask if there's any wriggle room in the rules.

So Dr A being one of the good guys pulls up the CDF document and we go through Cetuximab together with a fine tooth comb looking for loopholes. Can we say this is a third line treatment? What about of we say the side effects are really bad from 5FU? Is there an exception if you're a bad tempered fire breathing lizard?

Nope, the rules have been drawn up by government wonks and are a tight as a duck's posterior, in my situation you have to give some sort of Fluorouracil type chemo alongside Cetuximab or no Cetuximab.

There's a silence for a while.

"Look we'll carry on with just Cetuximab for this cycle, leave it with me and I'll talk to my colleagues and we'll work something out."

And that's where we left it. So next Monday I really have no idea what direction my further treatment is going to take. I'm not blaming the medical staff for this rather the rationing of cancer treatments that the NHS foists on us. Maybe there are some good clinical reasons for the Cetuximab rules but the problem is there's no flexibility, not room for the doctor who is treating the patient to say "look I know the rules say this but for this patient treating you this way is working well so we'll do it that way." Just the dead hand of NHS management one size fits all. Computer says no.

However on the plus side staying on just Cetuximab for another cycle did allow me to go to Norwich the following day where I might have accidentally acquired a new friend at the GoGoDragons auction

Fig 45: Rawr!

Wednesday 16 September 2015

It's down to the mouse genes now

I'm tapping this into the lappy whilst sat tin the day unit having me chemo and I'm going to have to get a move on as my chemo is going to be a good deal shorter than it previously has been. That's because the clever people who work out what toxic chemicals to pour into me have decided that I can't have the FOLFIRI (Fluorouracil / Irinotecan / Folonic Acid) treatment any more as the side effects are now at the stage where they'd do me more harm than the cancer. Apparently despite helping shrink my tumours it's also been quietly screwing around with my bone marrow and having too much more would cause my bone marrow to fail which, with characteristic understatement, my oncologist informed me was "not compatible with life".

Yeah thanks for that.

So now it's down to just one drug, the monoclonal antibody Cetuximab.  I did blog a bit about this drug earlier this year but essentially its a clever little thing made by combining mouse and human genes and it essentially works by latching onto the receptors that make cancer cells grow and blocking them from getting the signal that causes them to divide.

Now this can just be dribbled into me for a couple of hours once every two weeks so there's no need to go through all the rigmarole of carting a bottle of the old chemo round for 46 hours and a further bonus is that this stuff doesn't make you feel sick. All you need is a whack of clorphenamine* and hydrocortisone to stop you going into anaphylactic shock (told you this chemo business is full of larks) and you're good to go.  So all in all the treatment regime just got a whole lot easier, shorter and gentler but of course it's now just down to the one drug to hold the bugger in check whilst hopefully my own immune system can attack it which is a bit scary. It does feel like you're flying on just the one engine**

However the biggest bonus is not feeling crap after treatment. So as soon as I'm done here I'm off for a celebratory burger at Byrons. 

* Piriton to you and me
** But as a PPL holder I'm quite happy doing that. Twins used to scare me more.

Wednesday 9 September 2015

Wingnut and Widget

You may recall some time back that at the start of this voyage of discovery I had to sell the two horses I had because they were getting to the stage where I needed to be spending time training them and I couldn't do that due to hospital appointments, PICC lines and generally expecting to shuffle off the mortal coil in the next few months.

However now that things have stabilised I have either done a very smart or very stupid thing. Please say hello to Wingnut and Widget

Fig 25b: The meanest desperado ponies this side of the Pecos

I've been moderately sensible here in that these two (Widget is the skewbald [brown and white] one and Wingnut is the grey) are a pair of rescue ponies from a horse charity and when things finally go hairy and I have to go for a personal appointment with Epona the Horse Goddess they can go back and Mrs D doesn't have to go through all the problems of selling them. In the meantime I get these cheeky chappies to make a fuss of. They're not riding ponies, just a couple of ambulatory lawnmowers really but it's nice to have horses back here again and if nothing else it's keeping me fit wandering round the paddock every day collecting poo.
Fig 37: Charge!
As you can see here they're not very big (11hh and 12.3hh respectively) so they're cheap to feed and easy to handle and with any luck they'll be able to stay here for a good while.
And I get to lurk around tack shops for brushes and headcollars. What's not to like.
Fig 86a: The grooming parlour is open - shiny pony time

Sunday 30 August 2015

Meeting Dr. Bonce

Now I know I shouldn't be worried, my side effects from chemotherapy have been pretty mild so far, certainly compared to the horror stories I read about on the forums. The drugs are still working so far, the last scan showed a small reduction on the liver metastases and apart from a few niggles with planar/plantar syndrome I feel pretty healthy.

So far.

And over the last few weeks it's that "so far" that's been nagging at me. The anxiety that I've had a year and a half and median survival is two years. The stress of wondering every chemo session if the portacath is going to behave. Worrying that every sneeze and sniffle is the beginning of the neutropenic sepsis that's going to have me joining the choir invisible*. It was getting to the stage where I really was getting myself quite wound up the day before chemo and also, sorry Mrs Dracunculus, probably being a bit of a mardy git into the bargain.

So something needed to happen in the head department. I needed some kind of bonce doctor to peer inside this dragon's head and, I don't know, tell me it's all because I loved my mummy or something.

Anyway it turns out there's this charity called Maggies who, according to their blurb, offer "practical, emotional and social support" to cancer patients and their families and I knew there was one of their centres on the hospital grounds at Addenbrookes so last week I toddled over, took a deep breath and walked in. Weirdly its probably the toughest thing I've done during the whole cancer malarkey; the medical side is easy, that's just being poked and prodded. This is admitting that you're not as tough as you thought you were, that your emotions are shot to hell and that you need help.

Which is stupid when you think about it, treating how you cope with this bastard of a disease is just as important as treating the tumours themselves. Perhaps it's a hangover from the "big boys don't cry" generation I was brought up in but I would say to anyone going through any illness or trauma that it's OK to ask for help and you probably should.

So the volunteer I talked to immediately sorted out a cup of tea in the traditional English ritual that there's nothing that can't be fixed so long as you've got a mug of builder's and she arranged for me to see their psychologist who we'll call Dr. Bonce, notice he's a psychologist not a psychiatrist - there's a difference, and earlier this week I duly pop back and we have our first session.

Not surprisingly what I'm going through is completely normal and, after a lot of questions which determined I wasn't about to turn myself into pavement pizza by throwing myself off the roof of the hospital multi-storey car park, he tells me that it's my "threat centre" that's somewhat overactive. Apparently that's the bit of the brain that kept us alive when we dressed like Raquel Welch in One Million Years BC

Fig. 26b "Ug has PTSD from seeing mother eaten by dinosaur! Ug wants your girlfriend!"

Also one of the fun things about this bit of the brain is that exaggerates threats, so that rustle in the bushes is a lion about to pounce or these days that twinge is your portacath lumen breaking loose and lodging in a particularly inconvenient artery, and that's why you get anxious.

So what's the plan. Well I'm booked in for a few sessions with Dr. Bonce and he's going to teach me some stress reduction exercises and something called "mindfulness" which appears to be something about putting yourself in the moment and stopping worrying about the future. All sounds like good stuff that I can use and, to be honest, just going and talking abut this stuff to someone has helped a lot.

It's good to talk.

* I'm a baritone in case The Almighty is reading this blog

Tuesday 4 August 2015

I'm still here

For those of you that might have been worried (all 2 of you) I am still here and reasonably hale and hearty. I haven't been posting much because, well, nothing has really been happening. The old routine re-established itself after my chemo break and everything just chugged along.

But now I'm coming to the end of this round of chemo with cycle 12 of FOLFRI and Cetuximab staring tomorrow and a slightly out of sequence spin in the Donut of Doom happened earlier today. So what happens now? Well after a couple of chats with my oncologist it seems we just keep on keeping on. I'll get a short break for 4 weeks and then, assuming the scan shows the cancer hasn't grown, it's back to the nasty chemicals every 2 weeks.

Why only four weeks. Well that's the lovely caring NHS and the bollocks that is the Cancer Drugs Fund. The rules state that if you take a break of more that 4 weeks from Cetuximab then you lose the funding for it and can't have it again. Ever. From what I've been able to tell there's no clinical reason for this it's just a rule they have, probably purely for cash reasons. Seems to be plenty of money to splash out on ridiculous overseas aid projects and high speed rail line vanity projects but if you need these pricey* chemo drugs then sod you.  Not that private healthcare is much better, my private medical insurance has a specific clause in it that excludes cover for monoclonal antibody treatments.

So it's four weeks off and then another three months of fortnightly poisoning.

And how long can we keep this up? Well the answer seems to be "as long as you can stand it", or alternatively as long as the Donut of Doom says it's still working as I presume at some point the cancer becomes resistant to the chemical soup.

And how long can I stand it? Well to be honest I don't really know. Sure the three days of treatment and the couple after are not fun but it's bearable since we fannied about with the nausea medication** and the skin cracking is under control thanks to liberal applications of skin care gunk they usually use to treat eczema (hey, whatever works!).   What's hit home is the realisation that I'm now on this stuff forever. I suppose it's no worse than, say, dialysis for a kidney patient but it still a rather scary thought to wrap you brain around.

But I'm an awkward git (comes of being a dragon you see) and so long as it's keeping me still here we'll keep on doing it.

* it's about £3000 a time to be fair

** Metaclopromide, Ondansetron and Domperadone. All I'm missing is Aprepitant for the full house

Wednesday 6 May 2015

What I did on my chemo break

They say that money can't buy you happiness.

No, but it can buy you a room here, with hot and cold running flunkies, cocktails, spa treatments and a slap up celebratory dinner at Gary Rhodes' place

Friday 1 May 2015

Taking a break

Yes I know I haven't been posting lately and mainly that's because nothing very exciting has been happening on the cancer front. It's just been the routine that I recall from last year and it's quite surprising how easily being poked, prodded and poisoned does become a routine. Clinic on Monday (poke for bloods), chemo day unit on Wednesday (poke in the chest for the IV line), feeling like crap on Thursday and a trip to the shining metropolis* of Wisbech on Friday to have the pump taken off and the poking stick removed from my chest.

So today I should be feeling like death warmed up and getting ready for a trip to the Pride of the Fens but I'm not for the kindly oncologist has had a look at my cracked and bleeding feet and hands and the post cycle 6 scans which showed a 50% reduction in the liver metastases and declared that I can have 4 weeks off. The reasoning being that a break from the chemo will let me recover a bit from the side effects and make the remaining 6 cycles easier to bear and should have no adverse effects on the treatment of the cancer. I'm rather pleased about that as last time we just went for the full 12 cycles without stopping and by cycle 10 I was hardly recovering before it was time for the next one to start.

"Try and get some rest" they told me. So being me I'm getting on a plane on Monday so I can sit on a sun lounger for a week in 35 degree sunshine.

I'll probably be bored stupid by Thursday and steal a camel.

* may not actually shine, or be a metropolis.

Thursday 12 March 2015

Woo Woo! Here comes the desperation train.

I rather like the opera, sure it takes ten minutes in opera to say you would like a cup of tea because six people have to sing the line about wanting tea and how wonderful tea is about thirty times but that's fine; something as important as tea is worth taking time singing over.  Anyway just before Christmas I was lucky enough to get to see a performance of Donizetti's comic opera "The Elixir of Love", the story of which revolves around a love-struck young man and a fake potion sold by the quack Doctor Dulcamara that'll cause the unattainable object of our hero's affections to fall madly in love with him.

Fig 42: "Tea, Tea, Wonderful Tea. We all like tea!" (repeat 86 times)

The joke is that the "love potion" is nothing of the sort, just a bottle of wine, but in the end the boy gets the girl and everyone gets a curtain call.

However this week I was reminded of Doctor Dulcamara as a couple of things on the medical front happened (not to me) in the past week. Firstly there has been a private members bill* passing through parliament recently known after its sponsor as "The Saatchi Bill" but more formally as The Medical Innovations Bill which on the face of it sounds like it makes sense. The idea is that doctors should be free, with the patients consent, to try out new experimental treatments for cancer and other life threatening diseases without the fear of being sued for negligence if the patient subsequently explodes or is transformed into a eighty foot tall monster who goes on to ravage down-town Tokyo.  You can read a bit about it here and the fact that the normally useless Lib Dems make have actually done something worthwhile and killed it off.

Now initially I thought that The Saatchi Bill might be a good idea but after a bit of thought it's actually a pretty terrible one and would in essence run the very serious risk of being little more than a charter for your real world Doctor Dulcamaras. There is experimental and innovative treatment being offered to cancer patients all the time, from the likes of the FOXFIRE trial that I'm taking part in to new medicines that are so shiny they don't have names yet, just serial numbers. However all these treatments have in common is that there's some science been done to show that at least in theory its more curative than harmful and its at least been looked over by an ethics committee to ensure that it's probably not going to injure you or subject you to undue risk. Of course there are always risks; FOXFIRE I recall had a 1 in 1000 chance of completely destroying your liver but at least there were safeguards and one of those safeguards is the knowledge in the medical team that if they are reckless they're going to get sued up hill and down dale.

The problem is of course the big scary "Cancer" word. The drug treatments that are known to work are invariably toxic and they only work for so long so those of us with the disease, particularly advanced stages of it, are looking at long treatments that are aimed at keeping us alive for a bit longer and as one treatment after another becomes ineffective then desperation is in some cases going to take hold and regrettably people fall prey to every kind of mountebank and charlatan out there with the latest and greatest miracle cure. I'm sure some of these people who recommend and supply genuinely believe that sticking a litre of coffee up your jacksie five times a day as the "Wellness Warrior" did will cure you, or apricot kernels or whatever is the latest "wonder" thing that "big pharma" don't want you to know about. But let's face it they don't, it's just pseudoscientific woo.    

Of course you're never going to stop this and here's an article showing the kind of pickles people get themselves into when they hop on the "alternative" train but at least with the defeat of the Saatchi bill we won't be adding to the problem.

And what about me, you may ask? Sure you're OK now, maybe the Cetuximab is giving you a complexion you thought you'd left behind when you were 13 years old but its working. What happens when it stops working and you're looking at the big guy with the scythe who TALKS IN CAPITALS, wouldn't you grab at anything?

No, I'll put my trust in science and reason and by all means enrol in any phase 1 trails that a going but more out of a "at least I might do some good" motivation rather than "I'll do anything for another three months" but I won't be grasping at phantom promises of the woo merchants.  I'd rather go out and buy the most expensive bottle of Bordeaux that I can find.

After all, if it's good enough for Dulcamara's love potion...

* for my non UK readers a bill is a draft law and a private members one is a law that's proposed by a single member of parliament or the House of Lords rather than the government of the day.

Wednesday 18 February 2015

New Port

Well the new portacath has been in a week and, miracle of miracles, it's working! Currently it's dribbling Cetuximab into me very slowly as apparently it's not a drug you really want to rush as very bad things happen if you do.

After this comes the Irinotecan, dubbed "Evil Irene" by some patients which can be given a bit faster but which has its own particularly fun side effect, acute cholinergic syndrome which the medical literature cheerfully notes "can be fatal." To combat this they give you a shot of atropine first which, equally cheerfully, is the active ingredient in the poisonous plant Deadly Nightshade, also called Belladonna. So they give you a poison to counteract the other poison.

Isn't chemotherapy wonderful.

After that it's a simple matter of pumping you full of Folinic Acid which serves to give the next drug, Fluorouracil (5FU) a leg up. That's a nice drug and only gives you the squits, make you throw up, stops your bone marrow making white cells and platelets so you're prone to neutropenic sepsis and/or bleeding uncontrollably and also throws in palmar-plantar syndrome and mouth ulcers into the mix. Oh and the most bone weary fatigue you've ever had.

It had better be working or I'm going to be one mightily pigged off dragon.

Sunday 8 February 2015

The man in bed eight

If you've been keeping up with the blog you'll know that last week didn't exactly go very smoothly and come Thursday afternoon I was having a little bit of a sense of humour failure. So when I finally did get to sit down in the comfy chair and start connecting up to the necessary tubes and wires what's the last thing I want to hear from next door?

"Groan... Moan... Nurrrrse!"

Oh dear Jesus Christ on a Pogo Stick, it's the return of The Man From Bed Seven

Except it wasn't as it became quite clear that this chap was indeed in some kind of distress. I caught a glimpse of him when the overstretched nursing staff finally did get around to him, curled up almost in a foetal position on a hospital bed, wet from a spilt drink and a smell indicating that something had gone rather wrong in the stoma department.

"Where am I? What's happening?" he asked. Over and over again.

"You're in hospital Mr Smith1 they told him.

"Where am I?"

There were brief flashes of lucidity, he apologised to the nurses for the state he was in and the trouble he was causing, back in the day he had clearly been a civil and polite gentleman, but then the clouds rolled back in front of the sun and he couldn't understand why they needed to change his shirt.

"It's because you're all wet Mr Smith"

"What's happening?"

And then you hear the words you never want to hear in an oncology unit or quite frankly in any medical context. "Oh my god! <Senior Nurse Name> can you come here right away please"

I stuck my head in my laptop and tried to ignore the grunts and moans of pain from beyond the curtain.

After about half an hour whatever it was had been sorted out, treatment was over and they bundled up Mr Smith into his outside coat and humiliating knitted woolly bobble hat and plonked him in a wheelchair.

"Where am I going?"

"You're going home Mr Smith?"

"Home?" his voice visibly brightened.

"To the nursing home."

"I'm going home?" not so bright this time.

Then they left him. They were running late and had to cram the last few of us cancer dudes through the poking and prodding by eight when they shut up shop so Mr Smith just got unceremoniously parked up in a chair, hunched over in a huge coat and stupid hat like some kind of decrepit smurf who asked over and over "Where am I going?"

At one point he tried to move his chair. As the brakes were on all he succeeded in doing was making it rock backwards at such an alarming degree myself and another patient called out for one of the nurses to grab him as he was severely in danger of toppling backwards and dashing his brains out.

Eventually his transport must have arrived as some orderly came and wheeled him away, still asking where he was going.

He had nobody with him. He had no clue what had been done to him. He had no clue where he was going.

And as I sit here reeling from the effects of the treatment I consented to I have to wonder why we as a society were inflicting the same poisoning on this poor bastard. Maybe to ease his symptoms? Maybe some (absent) relative was a "You must save my grandpa at all costs" emotional mess? I don't know and I don't have any answers.

I'm not sure though that me and that other patient who called the nurse over did him any favours though.

1 not his real name of course.

Friday 6 February 2015


So Wednesday came and I happily winged my way down to the oncology day unit for the start of my FOLFRI/Cetuximab treatment. The bruising where they put in my port the other week was going down, the incisions healing up nicely and a couple of days earlier it had bled back really well after a quick flush.

So I sit down, they whack the Huber needle in (ouch) and do the precautionary draw back to make sure its working.

Fig 36c - A Huber Needle, big buggers aren't they

Nothing, nada, zilch. Not the tiniest spot of the red stuff comes out. So we try a flush, still nothing. I stand up and cough to dislodge it if it's got stuck against the vessel wall, nope. At one point they had me bending from side to side doing an "I'm a little teapot" impersonations and still no joy.

Right, chemicals. Urokinase to be precise. This is an enzyme that should dissolve any blood that's clotted in the tube that leads from the port to just above my heart. It takes an hour to work so I get a cup of NHS "tea" (which is flavourless brown water with essence of might once have been milk) and dick around on Twitter for sixty minutes.

And guess what, still nothing. So we change the needle (more ouch) and of course it still doesn't work. The day unit staff ring up vascular access who recommend extra Urokinase and another hours wait and sacrificing a cockerel to Asclepius, the Ancient Greek god of medicine. Turns out cytotoxic pharmacy were all out of cockerels so we had to skip that bit; which is a shame as after more waiting it still isn't drawing back.

It's now knocking on the door of 4 o'clock and my treatment I know will take five hours minimum and the chemo unit closes at eight. "We're going to have to get it X-Rayed" say the nurses so off I go and come back 45 minutes later (this is the NHS, you queue up for everything). After a little chat the nurses go off to ask vascular access the score. Now they knock off at 5 so colour me surprised when the nurses come back with the news they're not answering the phone.  "But we're just going to put a cannula in your hand and start the treatment that way." Poke... prod... "sharp scratch love", cannula in.

At this point I gently point out that my chemo has to be precisely co-ordinated; this drug, then that drug and so on culminating in a pump being connected to a slow speed infusion that runs over two days. Now I can't go home with a cannula in my paw so I further point out, a little more forcefully, that not only are they going to be putting in some overtime tonight they are going to have to get me that most precious of NHS resources, a hospital bed for a couple of days.

"Oh the portacath will start working," says cheery nurse.

I remind her the definition of madness is doing the same thing over and over again and expecting a different result.  She goes off for a little meeting with her colleagues, they come back with the on call doc who's had a look at my x-ray and decided that the end of the line is indeed in the wrong position and it would be dangerous to use.

They send me home and will call me tomorrow they say.


This is the NHS as I keep reminding you and although they do treatment "free at the point of use" and that treatment is usually to a high standard timekeeping and customer focus are as mythical creatures to them as the manticore and basilisk. So at 10am the following day (they open at 8) I am on the phone to them. I'm told to come in as soon as possible, go straight to vascular access and they'll put a temporary PICC line in until they can sort out the portacath.  So I run around like a blue arsed fly and get myself to the hospital for 12

"Can you come back at one" say Vascular Access, "half our nurses are on their lunch break"

I bugger off to the food court and have a heart attack lunch from the burger joint and report back at one to be told the port is unfixable as the line has completely worked its way loose and curled back on itself and is prodding into the wall of a major vein.

Good job they didn't use it then.

So that's got to come out and it does and an hour and a half later I'm duly PICCed and down in the oncology day unit reception. "They told me to come as soon as I could."

"Oh yes. You're booked in for 5pm. Take a seat outside"

I am normally a calm peaceful dragon but I was now ready to torch the place and told them I was going absolutely nowhere, taking a hospital porter hostage and would send back a burnt limb every 10 minutes until I got to see the person in charge.

30 minutes later we're hooked up the machine that goes beep and the festivities can start.  It took the full five hours and a bit more. Only had to correct them on the treatment I was having twice (oddly over the same drug, Ondansetron, that's pretty important as it stops you projectile vomiting the whole time you're having treatment)

Now I'm a strong willed person and will stand up and advocate for myself. What chance does someone who's a bit weak, confused and frail stand in the face of this nonsence.

Well I'll tell you in the next post. 

Thursday 29 January 2015

I am Dragon of Borg. You will be assimilated. Resistance is fabulous

I am now part dragon, part machine as I've had my very own implant fitted. It's hardly going to turn me into the Six Million Dollar Man or the Borg from Star Trek however as what they've done is put a gizmo called a Portacath into my chest. It looks like this

Fig 86b - Borg Cortical Node. A portacath  

What it is is basically a little chamber with a self-sealing rubber top connected to a catheter tube; it's implanted under the skin in my chest (just above my left moob) and the catheter is fed through a vein so that the entrance is just above my heart. When it comes to giving chemo all they do is pop a special needle into the chamber and all those lovely poisonous drugs get right into me. You may remember last year that I had something similar called a PICC line put in which similarly is used to give drugs and draw blood but the major disadvantage of those is that the end of the pipe is outside the body and needs to be kept covered and scrupulously clean to prevent infection, can't get wet and is prone to damage which to an outdoorsy dragon like me is a right royal pain in the arse. So this time I elected to go for the port. Being tiny and under the skin I should be able to keep riding and gardening without fear of yanking it out or it getting mucky.

So far so good but (and this is cancer, there's always a "but" remember) to insert this baby they need tunnel it under your skin so there's a tiny bit of surgery involved. And paperwork. So first you have to sign the consent form and they tell you all the stuff that can go wrong like you might get a blood clot right up to "If we balls this up we'll puncture a lung, don't worry too much about that as you have two of them."

Anyway I'm wheeled into theatre which had the world's smallest operating table in it which I only just fit on and I'm given a nice whack of Midazolam which belongs to the "wheee I'm floating in the air look at all the cute baby unicorns" class of drugs. Then they whack in the local anaesthetic and there's lots of pushing and tugging for a while, a quick x-ray to check everything's in the right place and then they superglue me shut.

Yes superglue. Just the same stuff you buy from B&Q but in a sterile tube. Originally it was invented for battlefield medical use during the Vietnamese war.

So I'm then wheeled out, given half an hour to make sure I'm ok and to let the woozy drugs wear off and I'm good to go.  "You might need to take some painkillers" they said.

Bloody hell and then some. This is the most painful invasive thing they've done to me so far, Take a look at this (warning - view of my man boob, may not be safe for work, children, wives or servants)

Fig 52 - Ouchies

That's 48 hours later so starting to heal up but that was not a whole load of fun.

The good news is that you can keep these in for years if nothing goes wrong and they require minimal maintenance so with any luck I won't need to go through this malarkey again.

Now stop looking at by moob!

Sunday 25 January 2015

A year has past since I broke my nose

Well it's been a year now since they said the dreaded words http://littledragoncancer.blogspot.co.uk/2014/01/youve-got-cancer.html

It's certainly been a bit of ride for the past 12 months and of course it's a ride I'd rather not have been on but it's not all been doom and gloom. And the best bit is I'm still here.

And I will be this time next year.

Because I'm an awkward bastard like that

(in case you're wondering about the post title - 1.02 seconds in to this...

Wednesday 21 January 2015

Happy Birthday, your cancer's back

Today is my 50th birthday. Yes your old dragon successfully made it to a half century of rotations around the sun. It's been a blast so far and I wouldn't have missed any of it... well maybe that bit when I was on a ferry in a storm in the North Sea and I managed to projectile vomit the length of the ship.

Unfortunately, and there's always an unfortunately with cancer, there was an unwelcome e carly birthday present this week when I went to get my results from the Donut of Doom and got the news that the liver metastases had started to grow back. Not by a huge amount, one of them by about a centimetre, but definitely on the march again. Fortunately it doesn't appear to have spread anywhere else so far which is a definite plus.

To be honest I was expecting the news. Since around the new year the fatigue has started to creep back and I was starting to get the liver capsule pain after eating which is what happened before. I told myself that it might be that I was run down after having had a persistent cold on the run up to Christmas and that the rest might be a bit of indigestion but being honest I knew.

So the plan is to whallop it with some more chemicals. Different ones this time with a regime called FOLFRI where the miracle wonder ingredient is Irinotecan which stops DNA from unzipping and thus buggers up cell growth. Happily unlike the platinum based drugs I was on before this doesn't give you the problems with cold screwing up your fingers and toes but it does cause hair loss and apparently can give you the most monumental squits. What fun.

I'm also going to be put onto a monoclonal antibody, Cetuximab which is some Frankenstein's Monster drug made by combining mouse and human genes. I'm quite comfortable with that and to be honest if they came up with something which worked that was made by throwing cute kittens and fluffy pink unicorns in a blender I'd be at the head of the queue to guzzle it down. If I suddenly start squeaking and raiding the fridge for cheese though I'll be sure and let you know.

Interestingly given the early pre-election skirmishing over the NHS and the withdrawal of some of the extra money for cancer drugs Cetuximab is one of those drugs that my oncologist has had to apply to the Cancer Drugs Fund for. I did mention that I was lucky to get in before they withdraw some of the money in March.

"Not at all," says he. "Cetuximab is still available and the only bowel cancer drug that's being withdrawn is one I don't use because, quite frankly, it hardly ever works."

So there you go. All the scaremongering about hundreds of cancer patients dying because of evil nasty government cuts is, quite frankly bollocks.

Right, where's my cheese