Tiny Aeroplanes

"Do you want to know how long?" my oncologist Dr Ahmad asked me back in early March.

Of course I bloody well did. I'd been trying to get a straight answer to that very question for weeks and the answer ranged from flat out denial along the lines of "we don't know everyone is different" to vague wishy-washy phrases like "medium term" and at last someone was going to give me a number.

I was studying mathematics at the time, I like numbers.

"Six months if the chemotherapy doesn't work, Eighteen or so if it does."

Numbers like pi and e I like. I didn't like six so much. Hell it isn't even a prime.

I could well believe him, we were about a month on from the diagnosis of the liver metastases and things were not going well; I'd been to the doctor to see about getting something with a bit more grunt than paracetemol as the over the counter stuff wasn't touching the pain any more and the neighbours, who we hadn't told, were asking if I was OK as I'd lost so much weight and was starting to get that grey pallor pinched face cancer look.

But six months. "Bugger" I think I said.

Probably followed by "Well, sod that!"

Anyway I made a promise to a very upset Mrs Dracunculus that I would be about to hang something on the Christmas tree that year. A little aeroplane decoration that she'd bought me when I was tooling around the skies in a PA28 (did I mention I'm one of the few dragons that's got a flying licence?)

So having spent the rest of the year being injected with radioactive Yttrium, poisoned by drugs developed from first world war mustard gas, simultaneous projectile vomiting and diarrhoea and not forgetting the man in bed 7 here I am. And here is the tiny aeroplane.

Going to put it up next year too. Sod off cancer.

Ups and downs

Thought I'd better do a blog post as I haven't done one for a while. As you know from the earlier post they've given me a couple of months off from the chemo now and I was due back in the donut of doom for another scan last week and, well the news was good. If anything there's been more shrinking of the liver metastases, enough for them to refer it back to the surgeons.

And duly the surgeons took a look but, as they said at the beginning, there was always a very slim chance it would be operable and so it remains.

I did ask but there's nothing more that they can do to shrink them further at this stage. Chemotherapy drugs are only effective because they attack rapidly dividing cells (which is why incidentally your hair falls out) so if the cancer isn't actively growing the don't work.

So what happens now, well now there's nothing to do but wait. But I'm not entirely sure for what.

Waiting

I'm getting on with life as best I can and despite not having a bucket list I'm cramming a few things in that I fancied doing, last Thursday for instance I attended a wonderful performance of Faure and Debussy at the Concertgebow in Amsterdam. Best tickets in the house of course.

You can't take it with you.

Close, but no cigar

Well the results are in and, to be fair, they're good. Another 50% reduction on the big liver mets and the primary tumour in the sigmoid has also shrunk. However given the number and spread of all the liver mets getting it clear enough to allow the liver resection was always a very long shot and so it has proved. They've shrunk a lot but there's just too many of them still to be able to remove enough liver to give clear margins and leave enough liver to cope with the vast quantities of alcohol* needed to fuel a dragon.

So the bad news is that I'm still palliative rather than curable but the good news is that with the amout of shrinkage they've probably bought me a fair amount of time before I get unwell again, hopefully somewhere towards the upper estimate of how long I have left. It's still there and it'll come back but with any luck that shouldn't be for a while and we have options when it does.

I'm back in two months for a ride in the donut of doom and we'll take a look then.



* A small glass of port and lemon at bedtime

Exams

I've always been quite good at tests and exams, in fact I don't think I've ever actually failed one or had to do a retake. All the way through O and A levels at school, my univerity degree, pilot's licence Navigation and Flight Tests (although I do recall giving ATC at Lydd a minor heart attack by turning left instead of right - I'd put my socks on the wrng feet that day) and I even managed to get my driving licence on the first go.

But you can always revise for tests, read the books, study the set text and student notes, practice with old exam papers, give yourself the best chance at passing.

Last Monday evening I had probably the most important test of my life, the one that says if the chemotherapy I've been having for the last six months has worked. It's a pretty simple test, someone sticks a tube in your arm and you get shoved through a CT scanner a few times. All you need to do is hold your breath for a few seconds when the computerised voice tells you to.  It's not a test you can revise for, there's no book to read, and every test is different. All you can do is lie there and let it happen in the knowledge that if you fail this test there's no exam body you can appeal to and you can't do a resit. If you pass you get to move onto the "curative" pathway, fail and you stay in the "palliative" stream which is the cancer equivalent of being held back a year, forever.

My paper gets marked tomorrow and I get the results on Monday.

I have booked the Daily Mail photographer so we can get a picture of me leaping in the air. I've not failed an exam yet and I don't intend to start now.

And it's over, for now.

So yesterday I finished cycle 12 of my FOLFOX chemotherapy and a nice nurse pulled my PICC line out. It's done, over, and I can have a shower without having to wear a blue plastic bag on my arm.

I haven't been blogging much as everything becare rather routine, a cycle of clinic - chemo - pump off - flush line and back to clinic again on a 2 week merry-go-round. The last couple of cycles have been, to be honest, really rough. The neuropathy is now constant and rather than a sharp cold feeling has become a dull numbness in the fingers and hands and a general soreness in the feet; I'm perpertually exhausted and can barely concentrate. Even watching the Great British Bake-Off is becoming a challenge and I can't work out whose sponge cake belongs to who*

But anyway the chemotherapy is over and that's a good thing. Yes? Well kinda, because apparently I found out this week that despite this bloody stuff poisoning you you also get withdrawal symptoms when you stop taking it and the neuropathy can get worse. Must have missed that part of the blurb when I signed the consent forms.

Of course the big question is "did it work". Well as you may have read earlier it was at least working on the liver metastices so the doctors were hopeful that it'll have carried on working. We find out in the next few days because on Monday I'm back in the donut of doom for a scan, the "multidisciplinary team"** meet on Thursday to read the runes and the goat entrails and the following Monday I get to hear if the man from hepatic surgery, he say yes, or no.

Stay tuned.




* apart from our hairy Irish proto-Gandalf of course - his is the one in the bin.
** one of them has a qualification in Uighur throat-singing, now that's multidisciplinary

Life During Wartime

I follow a journalist on Twitter (@johnelworthy  if you want to give him a follow) and he mentioned in a tweet that he was going to stop using the phrase "x died after a battle with cancer". I was most pleased with this and told him so as sometimes I wonder if I have accidentally joined the army since getting my diagnosis.

Cancer is surrounded by war metaphors. Cancer is an "enemy" to be engaged in "battle" that you "fight" using the "weapons" of chemotherapy and radiotherapy. I really don't know where it comes from but its lazy, innacurate and really tweaks my tail. Its a disease and I'm being treated for it; I'm not fighting the second battle of Ypres for crying out loud.

And of course the soldiers in this battle, that would be me, are always "brave" and "heroic". No we aren't. Bravery is rescuing a wounded comrade under fire. Heroism is running into a burning building to save the life of a child. You have a choice to be brave or heroic, having cancer isn't a choice it's just something that happens to you. Sure as a cancer patient you can be stoical and I think I am* but brave, not a chance.

Anyway the enemy will be engaged once more at Addenbrookes at 1300 hours this wednesday. Synchronise watches men! This is life during wartime



(Any excuse to post a Talking Heads video)

* Mrs Dracunculus may disagree as she has to put up with my grumpyness

Its working, but at a price.

Every couple of weeks the nice folk at the hospital extract a bit of blood from me. As time has gone on the PICC line has become increasingly uncooperative to this endeavor and today in order to get a dribble out if  it involved me coughing, standing up and taking deep breaths. I was beginning to wonder if jumping up and down on a hospital bed like in the Olympic games opening ceremony would be required.

The reason they need the blood is mainly to check that you're well enough for the next round of chemotherapy so they're looking at platelet counts and white blood cells. The other thing they do though is check for certain cancer markers in the blood, one of which is called CEA (which Professor Goole informs me is short for Carcinoembryonic Antigen). In healthy people the level is around 2.5 ng/ml and in your dragon at the start of treatment it was somewhere around the 300 mark indicating one seriously busy set of carcinomas.

Apparently according to my latest leakage into a test tube, I'm now down at 2, indicating that the bastard things aren't growing and we've put them to sleep.

Of course this being cancer it's swings and roundabouts and the wobbly-sit-on-horsey-mounted-on-a-spring in my playground is the fatigue. It's now pretty much constant throughout the 2 week treatment cycle whereas before it limited itself to when the 5FU pump was running and a day or two afterwards. Fatigue isn't like just being tired; sleep doesn't cure it and it messes with your head making concentration difficult and your thoughts as slow as wading through treacle.

"...It is by the juice of sapho that thoughts acquire speed..." I could do with some of that

So anyway because of that I've stopped driving and I'm relying on the Mrs Dragon chauffeuring services.  I should probably get her one of those hats.