Sep 14 2014

Hello to the end of the beginning

Lymphoma association booklet - High-grade non-Hodgkin lymphomaThe last time I wrote something on here, I mentioned that I’d had a diagnosis of lymphoma. Since then, I’ve had a more specific diagnosis given to me and a course of treatment outlined. The hospital wants to run a few more tests this week before I start out on treatment in earnest, but all being well, sometime towards the end of this month it really will be the end of the beginning.

For anyone that hasn’t thought too much about lymphoma, (and I was certainly in that category until a few weeks ago), it’s probably worthwhile me summarising what I’ve been told.

 

Lymphomas are cancers that attack the lymphatic system – the network of vessels and nodes that the body uses to clear away waste and infections from the body’s tissues. They’re categorised into two main types – Hodgkin and non-Hodgkin lymphomas, which seems about as sensible as dividing up the animal kingdom into elephants and non-elephants. Mine is a non-Hodgkin lymphoma (nHL).

Within the nHL category, there are low-grade and high-grade lymphomas. Low-grade variants develop slowly, whereas high-grade variants develop rapidly – you often hear the term aggressive used – but interestingly enough these tend to be easier to treat than the low-grade varieties. Lymphomas can also develop in either B cells or T cells – B cells are in the bone marrow, T cells are in the thymus.

The specific type of nHL I’ve been diagnosed with is mantle cell lymphoma (MCL). It’s relatively rare (it accounts for around 5% of all nHLs) and usually occurs in people 15-20 years older than I am. It affects the B cells and is (according to my consultant) ‘on the boundary’ between low and high-grade lymphomas, although the Lymphoma Association classify it as high-grade in their booklet.

This is where it all gets a little scary. The first thing it says about the treatment for MCL is:

 

MCL is difficult to treat successfully. It is not considered curable.

 

… which came as quite a shock, to say the least.

However, the treatment regime I’ve been given – the “Nordic Protocol” – appears to have excellent results, as long-term remission is definitely possible and apparently probable. The research I’ve read so far suggests that something like a 97% response rate to treatment is achieved, with mean survival times being boosted from the 3-5 years that used to be associated with this condition a decade or so ago to something like 7-10 years – and counting. Because the treatment protocol is relatively new, the researchers don’t believe that they’ve found the survival plateau yet – so although it isn’t curable in the strictest sense of the word, I’m very hopeful that something else will get me in 20 to 30 years time, long before MCL manages to!

I never thought I’d become a health blogger. However, I’ve decided that to keep myself sane (or as sane as I ever was), it will be therapeutic (and who knows, maybe of use to others) to document my progress here. As I said to my University of Leicester blog readers, this is not goodbye.

So, hello.

 

Sep 02 2014

My youngest daughter speaks

Her very first blog entry. It’s beautiful. I can’t wait to read more!

 

I particularly enjoy coming up with different scenarios as to how dad could have gotten the scar on his neck. It wasn’t from a biopsy, but in a sword fight with a samurai warrior over my mother’s honour.

 

Aug 20 2014

It’s lymphoma

I got the results of my excision biopsy yesterday morning. I’ve been told that I have a non-Hodgkins lymphoma, but that the prognosis is good with treatment – probably chemotherapy, radiotherapy or a combination of both.

I’m back at work today, feeling rather tired and distracted, but at least my neck is more comfortable now that the stitches have been removed.

Thank you to everyone who has left messages of support in the comments of my last post, on twitter, through facebook, on the ‘phone, by email – and some were delivered in person too! They were all greatly appreciated.

I’m determined to stay positive throughout this experience, so please remind me of that if I ever start to sound too sorry for myself on here or elsewhere.

Time for me to get back to work!

 

Aug 16 2014

Overcoming my fear

 

I must say a word about fear. It is life’s only true opponent. Only fear can defeat life. It is a clever, treacherous adversary, how well I know. It has no decency, respects no law or convention, shows no mercy. It goes for your weakest spot, which it finds with unnerving ease. It begins in your mind, always … so you must fight hard to express it. You must fight hard to shine the light of words upon it. Because if you don’t, if your fear becomes a wordless darkness that you avoid, perhaps even manage to forget, you open yourself to further attacks of fear because you never truly fought the opponent who defeated you.

Yann Martel, Life of Pi

It’s been one heck of a week. On Monday morning I was contacted by the Derby Royal Hospital. They asked me to go in on Tuesday to see my consultant about the results of an MRI, ultrasound and needle biopsy that I’d had the week before. On Wednesday morning I had an operation to remove an enlarged lymph node from my neck so that a full biopsy could be performed. I go back again on Tuesday to have the stitches removed – and to find out what comes next.

I’m certain that talking and writing about what’s happening to me will help to defeat the fear of the unknown that I’m feeling. I shall prepare to face the worst, but carry on positively hoping for the best. It’s the changes that life brings which makes the journey worthwhile above all.

Aug 08 2014

A simple user interface?

Here’s one final piece of PAFEC memorabilia for the time being – the DOGS 4.4 Option Selector from 1993.

Getting DOGS to do something involved selecting two items from an on screen (or on-tablet) menu. For example, to draw a single straight line, you selected the menu option LINE, followed by the menu option 2. This example was known as an ‘executing option’, as until another menu item was selected, indicating two more points in the drawing area would result in another straight line. You could also select menu options by using ‘typed input’ mode and typing its abbreviation – LIN2 in this case.

Versions of DOGS prior to the 4.1 release used two letter abbreviation codes for menu items which still worked of course, meaning that vast libraries of parametrics (the DOGS programming language used to create automated scripts based on sequences of commands) built since the first releases of the early 80s still worked. The move to three letter menu item codes became necessary as an increasing number of functions that had been added over time had ended up in some rather strange places on the menu.

Providing a printed card was an engineering solution to the graphics terminals of the day not having the space to display large amounts of text or graphics to describe the purpose of each option. The option selector therefore allowed the drawing area to be maximised.

The 4.4 option selector was double-sided, folded into thirds. It was introduced following research indicating that the earlier and larger menu cards designed to fit on a digitising tablet were seen as being too cumbersome. Customers who still wanted to use the menu card on a tablet were provided with a DOGS parametric that enabled one to be printed.

The last of the six images has an old (0602) Nottingham telephone and fax number on it, along with the PAFEC telex address. Company email addresses were probably still a year or two away for us at this point …

 

Aug 05 2014

PAFEC – The DOGS 3.1 SCURS Comment Block

This comment block, from the SCURS subroutine of DOGS 3.1 should bring back memories for former colleagues. The copy I have in my possession runs to just over 14 pages and has my provisional edits (dated 24th October 1985) for DOGS on the Sun-2 workstation using a Bitpad 1 compatible tablet. Seeing the lines of code starting IF (ITYPE.EQ.111) GOTO 395 again certainly brings back memories.

The SCURS comment block from DOGS 3.1, October 1985.The aim of SCURS was simple, but because of the ever-growing number of different graphics terminals, workstations and input devices DOGS supported, it had started to become unwieldy and became almost indecipherable by the release of DOGS 3.2 in 1986. DOGS 4.1 replaced SCURS with a structured library known as PUGS (PAFEC Universal Graphics System) used by Tektronix, Westward, Sigma and other graphics terminals, with a variant called LIONS used on Sun, Apollo, HP and other 32-bit workstations.

 

Aug 03 2014

PAFEC – Photographs of Strelley Hall, 1990

I have singularly failed so far to find my copy of the staff photograph from 1986, taken on the lawn at Strelley Hall to celebrate the 10th anniversary of the company. I’ll keep looking, but in the meantime, these are the photographs of the hall taken in 1990 by Derek Barley, who also provided the pictures of the Stapleford office for my earlier post.

The first picture is of the stables, with one of the PAFEC vans parked outside. I spent the first 18 months or so of my working life after university in the stables and I remember it being particularly cold during the winter of 1985/86, when my rear-wheel drive Skoda Rapid 120 was one of the few cars able to make it safely along Strelley Lane one snowy morning.

The stables at Strelley Hall, circa 1990. Image copyright Derek Barley. Used with permission.A couple of nice photographs of the main entrance to the Hall …

PAFEC, Strelley Hall, circa 1990. Image copyright Derek Barley. Used with permission.PAFEC, Strelley Hall, circa 1990. Image copyright Derek Barley. Used with permission.… and one taken from the terrace on the left-hand side of the main entrance, looking towards Strelley Church.

PAFEC, Strelley Hall, circa 1990. Image copyright Derek Barley. Used with permission.Finally, one of the resident chickens!

PAFEC, Strelley Hall, circa 1990. Image copyright Derek Barley. Used with permission.

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