None of my clothes fit

One of the first clues something was amiss at the back end of last year was the diet that never stopped. Me and the mrs had put on a few pounds over the summer so we decided to have a couple of months of watching what we eat and we duly started to shed the weight and got back to where we wanted to be. However my weight kept falling, and falling...

I'm looking at my weight records and on the 13th of September when I stopped dieting I was 84kg; as of last week I was down to 72kg*.  My cancer is hungry and keeps nicking my food, the little bastard.

Anyway one of the side effects is that none of my clothes fit. It's not just the waistline either which has dropped from a 36/38 to a 32 but it's the everything above the waist as well; t-shirts that were comfortably baggy now feel like you're wearing a tent, jackets don't close in the middle and to work would have to have internal fastenings where your nipples are. I put on some summer trousers the other week, took two steps and they fell down by ankles - which maybe a good look if you're a gangster rapper but you look a twerp if you're a late 40's white computer programmer.  Likewise I put one of my favourite jackets on and Mrs D said "you look just like a kid who's trying on his dad's clothes"; she was right, it actually made me look unwell and I may as well have had a big neon sign pointing at me saying "Cancer Weight Loss Dude"

So I went shopping. I don't like shopping, I like clothes shopping even less.

Mind you with a way smaller frame I found all those fashionable clothes they didn't make in lard-arse dragon sizes will now fit so we had a go at 32 waist skinny fit jeans and blue and white stripy french onion-seller shirts... no Dragon, you looked like a prat when you tried those in your 20's and you still look like a prat in them now.

I went with what I usually go for, outdoorsy active hiking up mountains with a touch of Our Man in Havana travel wear for the more formal side. Mountain Warehouse and Rohan absolutely love me**.

Of course this all costs money, they don't tell you how much this cancer lark costs when you get it but it's a not inconsiderable amount of baubles from this dragon's hoard but at least I have a hoard. I hate to think how others must struggle with these unexpected costs when Mr C comes knocking at the door.

I'm doing a bit of offsetting by flogging my old stuff on eBay. Anyone want to buy a hardly worn dinner jacket? I'm throwing in a free cummerbund.




*That's 13st 3lb to 11st 4lb in old money

**Actually they love my credit card; to them I'm just the means to move it from my wallet to their tills.

Adjustments

A rather sad week as the first real bastardness of the consequences of cancer came to pass. Nothing physical you understand but I sold my horses and now there's a silent set of stables and a paddock I need to get my ride on mower to keep the grass short.

I'd had lots of plans, was going to train Leo to harness as he'd just turned three and was ready to start working and I was going to get a horsebox and take Meadow to shows...

Fig 73: If you're gorgeous and you know it, clap your hooves

... but that's not going to happen. I'm flat on my back or in a hospital five days out of every two weeks and I get tired really easily so I couldn't give them the attention they need and they need to be doing some work rather than just standing in a field being ambulatory lawn ornaments. Fortunately they've both gone to good local homes and are right now being fussed, ridden, cuddled and generally pestered by little girls and probably wishing they were back in my quiet field being ambulatory lawn ornaments.

Going to miss them though, must go and plonk myself on the backs of other peoples horses so I can get my equine fix more often.

On the admin side we have had a step forward and one back. Going forward I'm now going to the little local hospital about 15 miles away to have my pump removed and the PICC line flushed and dressed; this is way better than having the schlep all the way down to Addenbrookes for what is a 5 minute procedure and is saving me a whole load of time, grief and petrol money. Going backwards the oncology day unit have been kicking up a fuss because they originally had me doing my clinic appointment and bloods taken and the chemo treatment on the same day. Now this confuses the poor little darlings at the NHS as its currently taking a life-age of men to get the blood work back that says if I can have the treatment or not* and so I have to have the clinic/bloods on one day and the chemo the next so it's two days of dicking about instead of one.

Bet that doesn't happen if you go private.




* Apparently there's a magic number of white blood cells and platelets you need

Normal

It was three months ago this week that I got the cancer diagnosis and in that time a rather ordinary word has taken on a new meaning. That word is "normal".

In the days "BC" normal was getting the train to work, picking up a bottle of milk from Sainsburys, walking the dogs. Now "normal" in cancer-speak seems to be the most un-normal things you could come up with, for example.

"Now take these poisonous chemicals, they will make you feel really sick, that's normal. We'll give you some slightly less poisonous chemicals to make you feel normal again."

Another one was during chemo last week, bear in mind this is cycle three, I have another 9 to go. I'm getting used to the chemo sessions, trekking back and forth to the hospital is of course rapidly becoming the new normal. Everything is going fine up until they run in the second set of magnesium and calcium salts (another side-effect preventer) and the nurse asks me if I'd like a drink, what came out of my mouth sounded like Ph'nglui mglw'nafh Cthulhu R'lyeh wgah'nagl fhtagn as my mouth and tongue decided they had forgotten how to make words.


Now this only lasted a matter of seconds but caused a bit of a stir and the summoning of a man in a white coat bearing a stethoscope who, after a few questions, established that this can happen on quickly delivered high doses of calcium and that it was, of course, normal.

I'm sorry but accidentally summoning the Elder Gods when asking for a cup of tea and shortbread biscuit is never going to be bastard normal.

But as I'm discovering three months in, as soon as someone hands down the dread diagnosis, nothing will be normal ever again.

Radioactivity

I now make Geiger counters crackle

Fig 27: Yes Ralf, but it might just keep me alive too

So this week had me back in the hospital, this time for the big enchilada, the SIRT procedure.Just to remind you this is the bit where they put these tiny spheres dosed with Yttrium-90 directly into the liver where they should lodge up close to the nasty tumours and zap them with beta radiation and killing them, or at the very least giving them several hard kicks in the nadgers.

Now this is incredibly time critical becuase Y-90 only has a 3 day half life so the treatment needs to be administered whilst its still effective. These spheres are custom ordered from a company called Sirtex in Australia and they are then flown to a nuclear lab in Sweden where they get made radioactive - most likely a process involving nuclear reactors and a moose - then they come to the UK in, I am suspecting, a big lead box with "DO NOT OPEN THIS BASTARD!" written on it in big red letters.  I mention this because as at 4pm on my date of admission the hospital were still waiting on a bed for me.

I made a phone call to the senior consultant oncolgist running the trial.  I had my bed fifteen minutes later.  And as an extra bonus I found when I got in they'd put me in a single side room. Result!

So a good, or at least reasonable, night followed and in the morning after the ritual 6am poking I toddle off for a brew in the day room. On my way back what do I hear drifting down the corridor...

"Nurse! Nuuuuurse! I'm going home now! Nurse!" Yep, it was the man from bed 7. He was still there, still shouting and still giving master-classes in Extreme Gittery. I went back to my room and closed the door.

So let's fast forward to the procedure. Essentially its the same as last week, they thread a wire up through an artery in my groin to the liver but this time squirt in the nasty stuff. I sign the forms and off we go only this time there's a problem as the access artery in my leg didn't like being poked last week and is trying to hide so there is lots of kerfuffle and multiple attempts at wielding scalpel blades, false starts they had to back out of and so on trying to get access.

This hurt. A lot. At one point they must have hit a major nerve as it felt like a flash fire was spreading down my leg. I may have screamed a bit.

However after a few minutes we are awash with local anathetics and the tubes are in position so out come the two boxes of Y-90 spheres. I was rather hoping they would play the incidental music from the Bond movies where the baddie's world destroying death machine is first show but no, NHS cutbacks I guess. The boxes themselves were perspex ones with a couple of knobs on the outside and two small glass bottles inside and from here on it it got all endearingly lo-tech. A couple of needles with tubes attached are poked in connected to me and there's some sort of flush mechanism attached and in the spheres go, helped along by one of the doctors gingerly gripping the output tube with forceps and giving it a gentle shake to make sure it flows smoothly.  One bottle, a third of the total, goes to the left lobe and the rest after a wire reposition goes into the right. The whole thing takes about half an hour and we're done. The doctors are happy, Nuclear Medicine are happy we haven't contaminated the hospital and after half an hour pressing on my groin I'm allowed back up to the ward.

The following day I have a couple of scans to make sure the spheres aren't anywhere they shouldn't be and I'm allowed home. "You may feel a bit flu like" they warn me but actually I feel fine.

Well I did until that evening when I felt I'd been hit by a train. I've been in bed pretty much since then until today with what felt like flu without the fever, that bone-aching tiredness that makes you just want to sleep.

Still I'm here, nothing has exploded and apart from turning into SlumberMan I didn't get any super hero powers.

They do a CT scan in a month from now. Let's hope its done some good.

Anyway here's some more Kraftwerk, because you can never have enough Kraftwerk. Sing along now.

Fig 42: Reisen, Zeit, Medizin, Unterhaltung

Of Angiograms and The Man in Bed 7

Bit of a gap since the last post but my excuse was that I've been in hospital; properly, with a bed and nurses and everything.  I've actually done pretty well as I'm knocking on the door of 50 years old and this was the first time I've had to stay overnight in a hospital.

The reason I was there was they need to fiddle around with my liver a bit before they shove the radioactive spheres into it. Now the idea behind these spheres is that if they squirt them into the correct artery that supplies the cancerous bits with blood these spheres are just the right size to stick in the artery where it narrows thus allowing them to offload beta radiation directly into the tumor. Neat! The downside is that this "correct" artery has a couple of branches off to the stomach and elsewhere and these need to be blocked off first so the spheres don't do to the healthy bits. This procedure is all done under a very clever (and expensive) X-ray angiogram machine and through a wire and tube that's been inserted into the groin and threaded up to the liver.

So on the day of the procedure I'm wheeled off the ward to the lift, then back to the ward as they've forgotten to take bloods to check my platelet count* and then off we go again. Everything is all explained to me and yet more consent forms are signed and then my role appears to be lie under the machine, don't move and hold your breath when we tell you to. In the meantime you get to listen to the two registrars and the senior consultant (the nice and amiable Dr See who came in and advised on the tricky bits) going about their work which, at times, sounded like you were in a machine shop and they were trying to work out which size screws and bolts would fit...

"... well that's a good sized gastric artery so we'll try with two ten-by-fives and the see if we can get a three-eighteenths Armstrong-Whitworth countersunk to close it ..."

Right at the end when all the stray blood vessels are closed in came the guy from Nuclear Medicine with a lead lined box. Now this isn't the treatment but it mimics it and is a very low dose of Technitium-99m which is used as a radioactive tracer. They inject this where they would put the spheres and if it only goes to the liver we're onto a winner.

So I'm injected with this stuff and I aquire my first superpower which is "lie completely flat for the next two hours and firmly press this cotton pad into your groin to stop the bleeding" which, as superpowers go, is a pretty crap one.

The wait isn't too bad mind as I spend most of it underneath a rotating gamma detecting camera which builds up a pretty 3D image of my insides. When it was done the technician showed me the image of my liver rotating round and round in pink and orange hues; it looked absolutely normal, just like in the text books and it's hard to believe there's something wrong with it.

So there we all are and its back to the ward.

Fig 62: An NHS ward, last week .

To be fair I was expecting worse. It was clean but too hot** (enough to raise my body temperature to a nurse-worrying 37.9 at one point) and the staff were great - friendly, courteous and attentive. Even the food wasn't bad.  The big problem was the noise and constant disturbance; the day kicks off at six and they didn't turn the lights down until midnight, everyone including me was on 4 hour observations so even if you do get to sleep they wake you up at 2am for blood pressure and general pokage and this being the oncology ward half the people in my bay of 7 beds are on machines that go "beep" so as they roll over in their sleep they block the flow and "BEEEP BEEEP FECKING ATTEND TO ME BEEEEEP!" happens.

And of course there are always the other patients. Now most were fine, nice people whom I exchanged pleasantries and a little conversation with. And then there was the man in bed 7.  At first I was being charitable and thinking maybe being elderly he was a bit confused, frightened and in pain. Then I thought he was a bit of a git. Then a fully paid up git. Finally I settled on the fact he has a PhD in gittishness from the University of Gittingen and was currently Emeritus Chair of Obnoxiousness and Git Studies at Trinity College.

His constant background routine was like the old priest in the Father Ted comedy series except his yelled phrases were "Nurse!", "Bottle!" and "Tablets!". This went on all night. In the early morning he decided he was going home, whilst connected to two drip lines. The nurses, under lots of provocation including racial and extreme sexual harrasement (he offered a nurse "more than the NHS paid for an hour" at one point) managed to get him back into bed several times until he decided quite calmly to disconnect his drips - fortunately he was just on fluids rather that chemo - and stand up. And promptly fall down.  At this point he got moved to a smaller side ward. Which was probably just as well as a queue was starting to form to kill him just like in Murder on the Orient Express.

They let me go home after two days in which, despite taking earplugs and eyemasks, I probably slept a total of four hours.  That was Thursday. Now you know why I haven't blogged until today. I've been asleep.

A hospital is a treatment machine. It's there to do stuff to to you. It most certainly is not somewhere you go to get better.

And I get to do the whole thing again next week.




* That's important because if its too low I bleed out all over the angioscopy suite and that blows the NHS cleaning up budget for the month.

** But the hospital as a whole has the heating cranked up to the max

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.