Full Circle?

The way we save our computer files seems to have come full-circle, as if we are back to forty or fifty years ago.

Clearing out more of my life’s debris reminded me of this. I had accumulated a collection of disks and tapes that are now little more than museum pieces. You once had to be so methodical in looking after your documents and images. But, before that, it was all done for you. An so it is now.

At first, with mainframe computers, systems managers made sure everything was safely backed-up. I learnt to program in a room full of teletypewriter terminals - the noise was deafening - that were connected to a computer centre somewhere else on the university campus. Once you had typed in your program and asked for it to be save, you could be reasonably sure it would be there ready the next time you logged in.

However, if you wanted to move programs or documents elsewhere, or if you had one of those new-fangled micro-computers (i.e. a PC), you had to transfer it on to magnetic takes or disks. The first PCs had no internal disks, nothing was saved automatically by an ‘app’, and there was no OneDrive or Google. The internet did not get going until around 1995.

I learnt the hard way using Tandy TRS80 computers. Everything had to be saved on C60 audio-cassettes, which were notoriously slow and unreliable. I lost hours of work more than once. It was a godsend when floppy disks came along.

Here are some of the storage media I used, now destined for the tip.  

8-inch floppy disks containing my Masters project, which was written in Pascal on an LSI-11 machine. UMIST insisted they had to be protected by special folders. 

The 8-inch disks look enormous next to the later 5¼ -inch and 3½-inch ‘hard’ floppy disks you may remember. 

This is a 6-inch cartridge take from a nineteen-eighties PDP11 Unix system, containing some of the work I did as a university research assistant.

Later, I used zip-disks which were a bit like thick floppy disks, but had greater capacity. Only a few home computers had them. 

 

Then, we all moved on to CD ROMS and DVD, and USB memory sticks and SD cards. I used a pair of memory sticks to transfer files from work-to-home and home-to-work. My first memory stick had a magnificent 256MB of space (that’s Megabytes not Gigabytes). 

How things have changed! Nowadays, some home computers have internet access only, and no disk drive or USB ports. Some have minimal internal storage. That is also the case if we work only on phones. It feels as if we are being pushed towards keeping everything on the ‘cloud’, like returning to the mainframe days.

Microsoft is removing the Windows video editor from our PCs (through Windows Updates) because they want us to use the online ‘ClipChamp’ editor. Google circulated an email saying they are deleting accounts inactive for more than two years. That could well include blogs. Andrew in Australia lost years of blog posts because of something unspecified he supposedly said. Next, they’ll be trying to charge us to store our stuff.

I don’t trust the b------s at all. I now have enormous amounts of material: family history research, my parents digitised photograph albums, our own photographs and colour slides, our own digital photographs, digitised videos from cine films, our own digital videos, ... and archived blog posts.

In all, it fills over 100 Gigabytes. I’ve backed it all up in duplicate on a pair of hard drives. I’m glad I learnt the discipline.

Exon 14

To paraphrase "GPs Behind Closed Doors", this post contains challenging medical issues.

Exon 14 sounds like a science fiction film. As little as ten years ago, it could well have been, but actually it is real.

I have something called the MET Exon 14 skipping mutation. It alters a specific gene, the MET gene (mesenchymal-epithelial transition) so that affected cells produce an abnormal protein which makes them grow uncontrollably.

The mutation causes lung tumours. It affects mainly smokers, but I put mine down to dirty Leeds in the nineteen-seventies when large numbers smoked, and offices, buses, cinemas, pubs and the shared houses I lived in reeked of a blue haze that stuck to your hair and clothes so much that you failed to notice. Leeds was also full of traffic fumes and pollution from coal fires and industries, and my accountancy job involved hours walking round warehouses, mills and factories where there were all kinds of dust and chemical vapours. The cause on my health record is "significant passive smoking". 

I was entirely symptomless until I had a seizure. Perhaps a routine chest X-ray might have detected it sooner and saved me a lot of trouble, but it was as good as impossible to get one during the covid lockdown, even if I had thought to request one.

Diagnosis begins with a CT-directed lung biopsy. You lie face-down in a CT scanner while a surgeon positions a thing metal tube into your back, through which they can then cut out and remove a small piece of tumour tissue for analysis and gene-sequencing. It is not a comfortable procedure. I wondered what was the cold liquid running into the back of my throat, which I had to spit out on to the scanner table. It was blood. We don't normally realise how cold the insides of our lungs get.

Gene sequencing is only the first part of the science fiction. There is a targeted therapy. The Merck drug company have licenced a chemical called Tepotinib (trade mane Tepmetko) in the form of a daily pill that blocks the abnormal protein, and slows down or stops the tumours from growing. It is a high cost treatment; I have heard a figure of £7,000 per month mentioned, but thanks to the NHS I do not have to pay.

Surprisingly, it is a relatively simple chemical - a hydrochloride hydrate of C₂₉H₂₈N₆O₂. I imagine that in some parts of the world they ignore the patent and make it themselves for a few pence per pill.

I have had other treatments too: chemotherapy which was awful, lung radiotherapy which was little trouble in my case, gamma knife radiotherapy which pinpoints and zaps small brain metastases, a brain op to drain the cyst that gamma knife left behind, which was scary. All over a year ago.

The side effects of Tepotinib are difficult, especially oedema (fluid retention). If you get cold it takes ages to get warm again because it is the equivalent of having 20 pounds (9 kg) of cold water bags strapped around your limbs and body, and, believe me, you would not want to have scrotal oedema (or vulval oedema I imagine, but don't know because I don't have that).

I am OK. It is but a scratch. I've had worse. None shall pass. I am still here.  

So, not only have we mapped the human genome to identify the 25,000 or so genes of our 23 chromosomes, we can gene-sequence malfunctioning cells to pick out a defective gene, understand its mechanisms, and construct a chemical to block its actions. To those of my generation, even the technologically literate, that really does sound like science fiction.

New things like this are coming along all the time. It should give hope to those who might become ill in the future.