What are the odds?

I suppose it was during the ultrasound scan that I first realised something was really up. Here I was, having my bladder and kidneys scanned, as a result of two years, on and off, of what we Brits might term “waterworks problems”. We were chatting away (“Good drainage! — yes that looks fine” … small-talk like that) when the scanner reached my right kidney.

“Everything okay?” I enquire.

“Let me finish and then we can discuss it,” the sonographer replies. The tone had changed.

Now, I say this was my first realisation that something was wrong, but it’s not quite as simple as that. As a mild hypochondriac I often live with the strange internal doublethink of believing that every ache or pain betokens some dreadful illness, while simultaneously knowing that that’s silly and that I'm fine really. Now the balance had changed: the dark fears had become the reality; the self-reassurance the self-deception.

“Maybe some kind of cyst – it’s worth having it checked out. I’ll put something in a note to your GP.”

And so she did, as I find out on getting the ”I'm so sorry” call from my GP with the (not very meaningful) news that the scan had found a 27mm heterogeneous vascular lesion on my right kidney, and the (rather more meaningful) news that as a consequence I was being urgently referred to Addenbrooke’s with suspected cancer of the kidney.

More scans

“This is the worst bit,” said the consultant, “the waiting around not knowing.”

I doubted this: an early and painful death was potentially the worst bit I thought. In any case, it seems that in the World of Cancer “not knowing” is a constant. Or at least not knowing everything. You don’t how well you'll respond to various treatments, you don’t know what’s happening internally between scans, you don’t know what the limited resolving power of the of scanners can’t reveal. An ultrasound scan, it turns out, doesn’t give a very precise image of the organs, so I was now to have a CT scan during which a contrast agent would be injected into my body so that my organs “lit up” in the images produced.

Meanwhile, I’d been able to gather information about kidney cancer from the Web. In particular it seemed that:

• The kind of sizes being talked about for my “mass” meant it was small in kidney cancer terms. In some cases the tumours grow football-sized before detection.
• Kidney cancer doesn’t respond to the usual radiation-based treatments used for many other cancers. It is treated by surgery and (recently) by new immunotherapy drugs which can sometimes be successful in stimulating the immune system into attacking the cancer.
• If a kidney has to be removed, people can usually get by fine with just one.

Quoth the server, 404

In addition to factual information available on the Web there is a range of forums and mailing lists dealing with kidney cancer, from furrow-browed ones detailing experiences and reviewing the latest research, to softer ones offering more purely emotional support (“I’ll pray for you on your cancer journey”). Needless to say I prefer the former. There are also lists of kidney cancer blogs (of which I suppose this is now one) which range from the reassuring (“I had kidney cancer n years ago and following surgery have had no recurrence”) to the embattled (“we were very disappointed to learn the scan showed there were now nodules on the lungs”) to the despairing, where a distraught spouse takes over to leave grief-stricken postings following the first blogger’s death. And there are those blogs which just get you a 404 – which could be good or bad …

So at yesterday’s meeting to review the CT scan result I already felt reasonably well-prepared for what might transpire and what the options might be. The key points were that:

• The CT scan confirms a 3.3cm × 2.5cm mass on the lower pole of my right kidney. Its removal is recommended as it is highly likely to be cancerous.
• The chances of any cancer having spread, given the size of the tumour, are very low. Removal of the tumour should effect a complete cure.
• Other organs (in the thorax, pelvis & abdomen) were surveyed in the CT scan imagery: nothing was found. My left kidney is “pristine”.
• The recommended procedure is an open partial nephrectomy, to happen just before or just after Xmas. This will probably entail 3-6 days in hospital and some weeks of recovery at home; no driving for 6 weeks.

So this is where I am. A fuller picture will emerge when the pathology is known for whatever is removed – but for now, the plan is that after some fairly hefty surgery I can expect the disease to be gone. Or, even better, that the slim chance comes good that the tumour is not cancerous – for as Woody Allen has observed, the most beautiful words in the English language are not “I love you” but “It's benign.”

Which is witty but not, I think, true.

Bulguksa Entrance

Last week I attended meetings of SC 34 and its working groups in Busan. Here’s an update on what is going on in the International Standard document format scene …

(For reference, the meeting resolutions are here [PDF]).

DSDL

The multi-part DSDL Standard has reached a type of completion as all the active parts of the project now have (or will very shortly have) published Standards. Since our last meeting we have seen the publication of Part 5 (Extensible Datatypes), and the unanimous approval of Part 11 (Schema Association, also published as a W3C Note).

ISO “ZIP”

After several months of rather political wrangling the work is now underway to develop an ISO “ZIP” – or, to give the Project its formal title: ISO/IEC 21320-1 Information technology — Document Container File — Part 1: Core. The new Standard will take the form of a shell document which points to the well-established PKWare Inc. .ZIP Application Note. The chief merits of Standardization are that it will make the standard easier to reference from other International Standard (both ODF and OOXML use it, for example), as well as clarifying the IPR regime under which Zip technology can be used. The goal is to retain 100% compatibility with established code and archives out there, but there may also be a need for clarification in some areas – for example in the encoding of non-ASCII file names for items in an archive. Notice that this is Part 1 of a multi-part Standard; the idea is that future additional parts may build functionality on top of the core. Although nothing has even been formally proposed yet for this, some ideas that have been aired are for standardized encyption & signing, and for a URI scheme for addressing into archives.

Two‐and‐a‐half cheers for ODF 1.2

During the week the news broke that ODF 1.2 had been approved as an OASIS standard.

Document format confusion

Impressions of Korea

This is my third visit to Korea

Korea Train eXpress (KTX)

Sasha, a Russian Blue and Leo, an Abyssinian. Both photos taken in natural light with a Nikkor 50mm f/1.4g lens at f/1.4, on a Fuji S5 Pro.

Cowslip Meadow

You are supposed not to transition from an out-of-focus foreground into an in-focus background, or blow your highlights. Although (using my new old camera) I could have retrieved all the highlights in the sky, I decided a notch of pure white actually looked more effective. The Topaz Adjust “dramatic” filter has been applied the sky too, which risks making parts of it darker than the lit grass (another non-no).

Oh well …

It can be tough, putting effort into standardization activities – particularly if you're not paid to do it by your employer. The tedious meetings, the jet lag, the bureaucratic friction and the engineering compromises can all eat away at the soul. But most people participating (particularly, perhaps, those not paid to do it by their employer) are kept going by the thought that, in the end, their contribution might make a difference. That in some small way the world will become a better place because of their efforts.

So it will come something of a kick in the teeth to see something like this Survey on Open Standards in the Public Sector from the UK government's Cabinet Office. It is hard to know where to start with this: whether it’s the ignorance of what a “standard” (never mind an “open standard”) is; or the thought that having a check-box survey is an intelligent way to form an assessment of technologies leading into a standards policy.

Faced with such clueless fuckwittery it’s tempting simply to ask: what’s the point?