It ain't that kind: three years on

Hwæt ... (well , Seamus Heaney thought it was a good equivalent to "So ...") ... it's been near enough three years. I was first investigated for metastatic cancer of unknown primary (CUP) in June 2012, and "three months ... to three years" was one of the few explicit figures anyone mentioned along the way. I had a scan yesterday and a solid case review today, and the news is far from good.

It ain't that kind: two-and-a-half years on

A progress report: as regular readers will be aware, two-and-a-half years ago I was diagnosed with metastatic cancer of unknown primary (CUP), which is not curable, and generally very bad news. However, I had a good response to palliative chemotherapy and, it seems, it's a fairly unaggressive flavour of CUP, so I had a couple of years symptom-free. But ...

It ain't that kind: two years on

A brief progress report: as regular readers will be aware, two years ago I was diagnosed with metastatic cancer of unknown primary (CUP), which is generally bad news. However, due to a good response to palliative treatment and, it seems, a fairly unaggressive flavour of CUP, things have so far gone far better than we dared hope for.

Tree of Life

A belated post (I wanted to confirm permission to blog about a non-public location): after my last chemotherapy at the end of June, I got feverish and needed a precautionary couple of days in hospital on antibiotics. But on the plus side, I wouldn't otherwise have seen Tree of Life, a beautiful mosaic mural in the courtyard garden off the Yeo oncology ward at Exeter's RD&E hospital.

The Journal of a Disappointed Man

Backdated at random: The Journal of a Disappointed Man. This is the pseudonymous diary of Bruce Frederick Cummings (7 September 1889 – 22 October 1919), who wrote as W. N. P. Barbellion an account of his life and decline due to multiple sclerosis. There are more than a few things I didn't realise about the account: particularly that MS was diagnosable in the early 1900s without the scan you'd expect nowadays. Also the standard story of who knew / didn't know about the diagnosis is increasingly under revision.

It ain't that kind: 18 months on

As some readers will know, in September 2012 I was diagnosed with cancer of unknown primary. A progress report:

Lanes and landscape

Under the railway bridge, West Town Farm

I mentioned I had a backlog of photography.The above rather post-apocalyptic image is of the viaduct over the long-closed Teign Valley railway, at West Town Farm, near Ide (a village southwest of Exeter).

I went there in June with Clare for a workshop on site-specific writing co-run by Oriana Ascanio of  Resident Writers and Christine Duff of OrganicARTS. I've delayed writing about it because, to be honest, writing spontaneously in situ is not at all my kind of thing - I'm not a fast writer, and I tend to visit places and write later, after reflection and research. Nevertheless, it was a thought-provoking afternoon out. The location touched on a lot of issues I've mentioned previously, particularly the idea of the rural landscape as a construct; and the tension between rural England's role as an economically viable productive resource and as a kind of aesthetic experience for visitors and incomers (a conflict which manifests, for instance, in the controversies over windfarms, solar farms, and polytunnels). See previously: Rural photography - the shaping of aesthetics and Views of the countryside.

West Town Farm looks to me a successful compromise between different functions of the countryside. It's a working farm (producing organic beef, pork, potatoes, apples, squash and pumpkins) but also focuses on environmental stewardship to protect the landscape as a niche for wildlife, as well as hosting various educational and artistic projects (see the West Town Farm website for background).

As part of the visit, we were given a tour of the farm trail, which showcases the various aspects and habitats of the farm. Probably the most distinctive was the railway cutting, maintained as a habitat for badgers and bats. I did a runner from the writing exercise, pleading the not-entirely-untrue excuse that photography was my preferred medium, just to have another look at it alone.

At the moment, I'm finding landscape exploration a continuing fascination. I've found it a coping strategy with my CUP to avoid introspection, which rapidly leads to feeling depressed, and though you might think being alone in the countryside would foster introspection, I've found quite the opposite: for me, immersion in landscape drives out the 'internal' in favour of the experience, and I can go for hours without remembering more than momentarily that I have a terminal condition. I've never so fully understood Dr Johnson's comment:

Boswell. "But is not the fear of death natural to man ?" Johnson. "So much so, Sir, that the whole of life is but keeping away the thoughts of it." He then, in a low and earnest tone, talked of his meditating upon the awful hour of his own dissolution, and in what manner he should conduct himself upon that occasion: "I know not (said he,) whether I should wish to have a friend by me, or have it all between God and myself."
- Boswell, The Life of Samuel Johnson, 1791

I'm not in denial. I can think about it and discuss it whenever needed. But I'm not letting it dominate my life, and "keeping away the thoughts of it" at other times is part of that.

Anyhow, back to West Town Farm. The cutting, especially the part under the viaduct, has a very "Where London stood" feel. When you think about, however, the line closed in 1958 and the cutting would be completely overgrown if it had been left untouched - as you rapidly find when you reach the south-eastern end of the farm trail section. In fact the cutting, like the rest of the farm, is a tightly-managed habitat, both environmentally and artistically.

This fallen rock is not left in the middle of the path by accident; it was a conscious choice. Originally intended to be sculpted, it was left by the artist untouched as an artwork in itself, and it now supports an Ansel Adams style fern. No doubt the same aesthetic is behind the fallen trees crossing the path, but not obstructing it. This knowledge doesn't detract, however, from the powerful atmosphere of the place, one of complete isolation and seclusion, despite it being only half a mile from the busy A30, and a mile from Exeter itself. It feels as if it could be many miles - or even centuries - from civilisation:

Mounds of earth are said to still exist in the woods, which originally formed the roads for these machines, but they are now so low, and so covered with thickets, that nothing can be learnt from them; and, indeed, though I have heard of their existence, I have never seen one. Great holes were made through the very hills for the passage of the iron chariot, but they are now blocked by the falling roofs, nor dare any one explore such parts as may yet be open.
- Richard Jefferies, After London, 1885, Project Gutenberg ID 13944

One positive aspect of the afternoon was a brief conversation with another of the course members, Clare Bryden. She runs a number of blogs, all of which put me to shame in terms of creativity and committment to real social causes - particularly sustainability - but one of them, And the end of all our exploring ("will be to arrive where we started. And know the place for the first time") shows we share an interest in the connections between past and present landscape.

A trio of posts in particular interested me - collectively tagged Woodwater Lane - which document her exploration, in present and historical past, of a lane at the south-east of Exeter. Though cut by railway and roads, partially erased by development, the lane is still traceable.

The posts link to some extremely cool cartographic resources. I already knew about the Historical Maps section of the A Vision of Britain through Time site, but not the British Library Georeferencing site. This is a user-contributed project to correlate old maps with current Google Earth ones. Contributors identify common data points across an area of interest, then software adjusts for scale and distortion to bring the maps into coincidence. The result is then visible as an overlay, with a slider button to fade between old and new.

The example used in the Woodwater Lane exploration is this 1801 map of Exeter, and there are many more accessible through a convenient graphical map finder. Ones that connect with previous JSBlog topics include Niton (Isle of Wight), 1793; Shanklin, 1793; Axmouth, Devon, 1806; Ottery St. Mary, Devon, 1806; Exmouth, 1801; and Torbay, Devon, 1802.

- Ray

The Old Sailor - procrastinatory fog

I generally can't stand AA Milne. The pathetically lame Christopher Robin. Winnie the Pooh, and Pooh sticks (infantile scatological names made acceptable by sticking an extra letter on the end, at the level of calling a character Winnie the Shitt). And so on. But I have to accept that The Old Sailor is fine psychological commentary.

There was once an old sailor my grandfather knew
Who had so many things which he wanted to do
That, whenever he thought it was time to begin,
He couldn’t because of the state he was in.

He was shipwrecked, and lived on a island for weeks,
And he wanted a hat, and he wanted some breeks;
And he wanted some nets, or a line and some hooks
For the turtles and things which you read of in books.

And, thinking of this, he remembered a thing
Which he wanted (for water) and that was a spring;
And he thought that to talk to he’d look for, and keep
(If he found it) a goat, or some chickens and sheep.

Then, because of the weather, he wanted a hut
With a door (to come in by) which opened and shut
(With a jerk, which was useful if snakes were about),
And a very strong lock to keep savages out.

He began on the fish-hooks, and when he’d begun
He decided he couldn’t because of the sun.
So he knew what he ought to begin with, and that
Was to find, or to make, a large sun-stopping hat.

He was making the hat with some leaves from a tree,
When he thought, “I’m as hot as a body can be,
And I’ve nothing to take for my terrible thirst;
So I’ll look for a spring, and I’ll look for it first.”

Then he thought as he started, “Oh, dear and oh, dear!
I’ll be lonely tomorrow with nobody here!”
So he made in his note-book a couple of notes:
“I must first find some chickens” and “No, I mean goats.”

He had just seen a goat (which he knew by the shape)
When he thought, “But I must have boat for escape.
But a boat means a sail, which means needles and thread;
So I’d better sit down and make needles instead.”

He began on a needle, but thought as he worked,
That, if this was an island where savages lurked,
Sitting safe in his hut he’d have nothing to fear,
Whereas now they might suddenly breathe in his ear!

So he thought of his hut … and he thought of his boat,
And his hat and his breeks, and his chickens and goat,
And the hooks (for his food) and the spring (for his thirst) …
But he never could think which he ought to do first.

And so in the end he did nothing at all,
But basked on the shingle wrapped up in a shawl.
And I think it was dreadful the way he behaved -
He did nothing but bask until he was saved!

This is very close to home. I knew technically about "chemo brain" aka "chemo fog" aka "post-chemotherapy cognitive impairment", but I hadn't quite imagined that I'd get it. It's real. I don't know the etiology. Theories include effects of the toxicity of chemotherapy drugs; physical effects of the cancer itself; psychological effects of cancer and its treatment; or combinations of the lot.

Whatever: I'm just so slow. If I get kicked into action, I don't think there's any impairment. This afternoon, it become urgent that I do a logo for a local organisation. It took about 35 minutes: use Internet resources to find a forgotten font (using a font-finding service); download it; create the logo to specifications in the GIMP, using that font; save various copies; and send. I'm still thoroughly on form, once I get moving.

But I'd been sitting looking at that job for about three weeks. Every time I saw it, I'd start ... then suddenly divert to having a cup of tea first, or worrying about some other task of around the same priority, or watching Jeremy Kyle, or going all nihilistic and thinking "what does it matter?" and going for a 3-mile walk.

I'm not like this normally. AA Milne is horribly accurate.

There's a lot more in the same vein at The Procrastination Equation.

- Ray
(credits for this post to Clare, for drawing my attention to this poem, and producing the book, which I didn't know we had in the house).

On not going back

In November 2011 I wrote a post - On going back - that explored a circumstance where returning to places and people of my childhood - always an experience to be approached with caution - had worked outstandingly. It doesn't always. I've been floundering over how to tackle this topic, but I'll start with a spot of social history.

Gosport, Hampshire, the town where I was brought up, has a long history as a naval and military town supporting the infrastructure and defence of Portsmouth harbour. Until well into the 20th century, this role required defence of the town, which was thus crammed into a small area within ramparts. It was very scruffy but vigorous, judging by the number of pubs and industrial premises (see There are Six taverns in the Town and Public Houses in Gosport High Street area, c. 1850), though not without affluent areas on the High Street, and a shore area called Coldharbour (later Clarence Square) where high-ranking naval officers had Georgian town houses. However, the 20th century brought major changes: in the early 20th century, expansion of suburbs sidelined the old town area, which began to go downhill; and World War Two devastated it. As a local history book described it:

The centre of the town was left as a decaying rubbish heap, jagged blocks of masonry represented the old Thorngate Hall ... The new cinema erected just before the war remained a burned out shell ... The Trinity Church still stood, with fire bomb marks through its roof but the area around was a burned out slum, hideous to see, in the midst of which stood a few decaying almshouses. Clarence Square, once the home of Admirals, was a sordid wreck.
...
Few towns of its size had suffered so heavily during the war and at one stage more than half its habitable homes had been more or less severely damaged or obliterated.
- The Story of Gosport, LFW White, pub. SWP Barrell, 1966

As with many other towns similarly devastated, the post-war priority was restoring housing capacity - in the context of a rising birth rate - rather than reconstruction. This mostly continued to happen in the suburbs, hastening the decay of much of the old town area. Over the next few decades, virtually all that remained of it, except for the High Street, had been razed. In the mid-1960s, what was left of the southern side of the town had become open space planted with tower blocks, and the northern harbourside become industrial development. Much else, since the late 1970s, has filled in with further solely residential development, with large areas devoted to car parks. You can get an idea of the changes - click to enlarge the images - by comparing the 1850 map (nearly all of the depicted area was built-up with the traditional tight conglomeration of mixed working, trading, and residential space) and the present-day aerial view.

To get to the point, over the past few days I've been suffering an intense nostalgia. I was born in 1956, and I just about remember Gosport harbour-front in the early 1960s, before the shorefront tower blocks were built (here's a view c. 1960 of the site where Seaward Tower now stands) ...

Gosport 1960s W N Mansfield - from Wikipedia, Creative Commons Attribution-ShareAlike 3.0 License.

... and also remember, from the mid-1970s, the last remnants of the northern side of the old town, the seedy North Street (see 1900 image), and Sea Horse Street that branched off it, both interrupted by bombed-out empty lots partly overgrown with buddleia. There were pubs, though I was too young to go into them: at one end of North Street was The Crown (now closed, see Google Maps Street View); and at the other, the Fox Tavern, which is still extant, though sadly run-down externally.

But their context is gone. North Street just exists as a couple of short segments on either side of a modern housing development, and much the same is true of whatever else exists of the old town. I can't blame the post-war planners - their decisions made perfect sense pragmatically within financial restraints - but it has left a town centre with little overall physical continuity with its past.

I'm not saying there's nothing to be found if you look. As I said previously, Gosport is heavily imprinted with the relics of the Victorian Cold War that resulted in the Palmerston fortifications, along with other military installations (see, for instance, Priddy's Hard). But I've visited those, and they're geeky-interest aspects of the town that have engaged me intellectually, but not especially emotionally. I can't tell how much of it is symptomatic of my current health problems, but I'm getting an uncomfortable yearning: a wish that I could re-connect with that Gosport I just about remember, when the harbour-front wasn't all aseptic marinas and I could wander out on the mud and find sailors' clay pipes, and whole streets still carried a strong echo of what it had been a century before. But that town is gone.

- Ray

Slightly different shaped buttons

I just encountered - thanks, Vickie - an article I somehow missed in the Guardian's Occam's Corner series, Why I'm feeling so crabby about cancer conspiracy theories. It'd be worth reading just for one memorable analogy:

Briefly, killing cancer cells while leaving normal cells unharmed is like trying to win an old fashioned infantry battle in which both sides are wearing the same uniform, except some of the enemy have slightly different shaped buttons, others have slightly longer bootlaces, others have slightly lacier underwear, and all have the ability to suddenly change clothes halfway through the fight.
- Why I'm feeling so crabby about cancer conspiracy theories, Cath Ennis, The Guardian, 7 December 2012

- Ray

Bright start

Best wishes for 2013 to all my readers. After a rainy Christmas, 2013 started with a bright clear morning and a high tide on the Estuary: conditions that make those perfect picture-postcard Topsham river scenes.

I'll start the year with a news update and general apology for neglecting friends, colleagues and other regular weblog correspondents. As you may or may not know, in late 2012 I was diagnosed with cancer of unknown primary (see It ain't that kind for the details) and have been pretty exhausted a lot of the time from the three-weekly chemotherapy sessions. Although we're not talking about a cure - this treatment is aimed at remission - the good news is that it's so far working as hoped. Next week I have the last session (for now), and I'm still otherwise fine health-wise (it's all going on in obscure lymph nodes I didn't even know existed, and only shows up on scans). So, with due caution, it's looking like "game on" for 2013. Have a good year! I certainly intend to have one.

- Ray
click any image to enlarge

A Vision in a Dream. A Fragment

I just had to share this. The night before last, I was feeling pretty fretful in the small hours with joint pains from the chemotherapy, so eventually gave in and took a couple of co-codamols (what they call "Tylenol 1" in the USA). They clearly worked, because I woke up around 3pm - but with vague recollections of an interminable dream of being at a pub quiz for hours on end. I remember two of the questions:

• In what sport is the Leaping Grand Cheval tackle permitted?
• On what classical symphony is the song "The Elephant's Covered in Skin" based?

Not exactly Coleridge. I think I'll stick to ibuprofen in future ...

- Ray

PS  Cautiously good news in respect of all this. See the 14th November 2012 update to It ain't that kind.

It ain't that kind #1

A service announcement. I've been searching for a literary way to raise this, but these panels from Watchmen showing Edgar Jacobi (aka Moloch, a retired master criminal) sum up the situation as well as anything.
      This week I start chemotherapy for moderately advanced metastatic cancer in the lymph nodes of my chest and neck (the initial diagnosis of cancer followed a CT scan at the beginning of July, but precise identification and treatment formulation took rather longer). There's so far no identifiable primary tumour, and if I have what it currently appears to be - a syndrome called "cancer of unknown primary", aka CUP- the prognosis is not at all good: the treatment aim is delay/remission rather than cure.
      They're giving me a "best guess" chemotherapy - cisplatin/docetaxel combination therapy - based on the location and histology of the cancer. These days, this is actually a pretty good option: not exactly a guess, but an informed clinical decision based on location and cell types. The lymphatic system is the body's drainage system, and where lymphatic metastases turn up gives a good clue as to whereabouts a cancer has come from. So I'm getting these two drugs which target the cancer types from the two main options: lung and throat.
      The nasty aspect is that there's a significant chance - maybe 50/50 - that the chemotherapy won't have any effect. This I'll only know after several treatment cycles (dosing every three weeks). The rather frightening raw stats are median survival rate of 3-4 months after diagnosis, 25% one year survival, 10% five year survival. But I'm otherwise fit and well at present - so far it's all going on at a subtle level that only shows up on scans - and trying to keep an open mind about time scales.
      I know this post is going to be a real downer for many readers I've known for years now, but I'd rather explain the situation than bury it under taboo and mystique. I'm not going to devote much space on JSBlog to writing about it - "lymph node bores" who document every daily up and down of their illness and treatment can be a real drag, undoubtedly worthy though the endeavour is - but the focus may change: less reading, and more photography and travel.
      I've not much else to say about it at present, except to apologise if I'm slow responding to e-mails - it's a complicated time. Oh, and don't e-mail me with recommendations for quack remedies: whatever the weaknesses in the system, mainstream evidence-based treatment is still the best shot I'll get.

- Ray

Update, 14th November 2012
I'm very well pleased. I had a call from the hospital today with full results from a repeat scan last week: "improvement in all areas" - the metastases have shrunk measurably. After just three cycles of treatment, it's still very early days; but getting a response to the chemotherapy is great news, with hope of a longer rather than shorter survival time.
      Chemotherapy hasn't been too bad. The three-week cycle consists of a very boring day in hospital on a drip, followed by a couple of days feeling a bit tired, then 3-4 days a real bitch of aching all over, a week feeling OK but exhausted, then a final week feeling pretty normal before it all starts again. And a lot of pills to take.
      I'm otherwise fine: no symptoms apart from those caused by the chemo (including baldness, though my eyebrows stayed). I'll know about the precise treatment plan at  my next hospital appointment at the end of the month. But it'll most likely involve continuing the chemotherapy into the beginning of 2013, perhaps with some radiotherapy to follow.

Update, 28th January 2013
I saw the consultant today and got the results of a recent full body CT re-scan: "stable". If not as positive as further shrinkage, it's an OK result - existing tumours still shrunk, nothing new, and my overall health fine. Tomorrow I have my last chemotherapy (for the moment) and am then signed off for three months - no radiotherapy for now, which is also good - after which I'll get another CT scan.
      The downside is that CUP is a very unpredictable syndrome, and they can't give me even a vague prognosis except that the cancer will come back - maybe even before the three months are up. (Possibly the most chilling point of the conversation was when the consultant rather pointedly sidestepped answering when Clare asked about my prospects for our wedding anniversary in September). I am, they say, in "the better prognosis group" (because - to put it bluntly - if I was in "the worse prognosis group" I'd well likely be dead already) but this doesn't seem to have any clear predictive implications about what length of remission, if any, I can expect.
      Since I still don't have any symptoms beyond those from treatment, I'm increasingly resigned to just getting on with life, with as little time-wasting as I can manage. As I said on the main blog - Bright start - I have every intention of enjoying 2013.

Update, 2nd April 2013
Still feeling fine: much fitter and well-er for having recovered from the chemotherapy. In March I got in a couple of solid walks (one on the Jurassic Coast with a friend, one with Clare on the Isle of Wight when we went down to see my Dad and family). My hair is growing back - distinctly whiter than before the treatment, but I can live with that, as well as with very numb toes, and slightly altered sensation in my fingers (a mild case of the peripheral neuropathy that's mentioned on the side effect list). Fortunately it hasn't affected my fingers enough to disrupt playing the accordion. But it's coming up to a scary point: the three-month repeat scan is in a fortnight, and I'm distinctly jittery.

Update, 29th April 2013
Excellent news: we saw the oncologist today, and the scan results were stable again. Nothing new. Of the existing metastases, some have no change, some are very slightly larger, and some very slightly smaller - and the changes are small enough that they might partially be accounted for by random measurement variation. So - I'm still in remission; no new treatment is needed for the moment, and I'm signed off for another three months.

Update and thoughts, 4th June 2013
I'm coming round to the consideration that I've been lucky under the circumstances (while it ain't exactly "lucky" to get cancer) that this was caught early. I didn't tell you the background of the diagnosis. It came about through a cough that hadn't properly cleared up some months after a very nasty winter bug. I was referred for a chest x-ray, and an enlarged lymph node showed up on that. By the time of the x-ray appointment, the cough had stopped - it seems to have been irrelevant. So, I guess, the cancer was caught long before it became symptomatic. I have the accident of that bug to thank for an early diagnosis of a syndrome that's normally spotted rather late. Anyhow, it's Spring 2013 and I feel fine. However it goes now, I've already had a great deal more - in time, and everything else - than I expected last September.

Update: 29th July 2013.  "Summer's lease hath all too short a date"; the latest CT scan results show the remission is over. This wasn't unexpected, so while it's disappointing news, it's not devastating, and there's a good chance that further treatment will hold things off a bit longer. I'm to have a new round of a different combination chemotherapy, GemCarbo, in three months' time (all being well).

     How this came about: I did ask - stressing that I appreciated no precision was possible - for a ballpark figure about survival time. The oncologist said "Three months ... to three years". Great.

     So the three months is my personal decision about a scary optimisation problem: doing it straight away could have a more substantial benefit in terms of survival time; but do I want to spend summer feeling rather crap as a trade-off for that uncertain benefit? I opted for delaying, as I'm still asymptomatic and having a great time of what's turned out to be a very pleasant summer. The oncologist saw it as an acceptable choice to defer the treatment until October, and go for a "watch and wait" approach, with the option of starting sooner if I show any signs of getting unwell. We'll see what happens.

Update: 3rd September 2013. Silver! - I'm pleased to say I didn't miss out on our Silver Wedding Anniversary.

Update:  28th October 2013. The plan worked. A repeat scan last week showed things are (in the words of the liaison nurse) "progressing but not galloping": a bit more enlargement in the originally affected lymph nodes, but not major; nor do I have any symptoms, or any sign of involvement elsewhere. I saw the oncologist today, and there's a welcome change of plan; as I'm still OK, they advised - and I was happy to go along with this - continuing the "watch and wait" approach for another three months.

     I say "welcome" - but it's actually a combination of welcome and unsettling. Of course I don't want bad news, but you get into a mindset for coping with a specific situation (for instance, the possibility of being dead in three months), and when that situation changes to a newly uncertain one, even if it's slightly better, you're suddenly thrown into having to revise all the coping strategies. And I'll have to do my tax return. :)

Update: 27th January 2013. Wow! Excellent news: my latest scan result summary is "stable" (no measurable change over the past three months) - and this is without further treatment. I'm signed off for another three months.

Continued in It ain't that kind: a year on >>>

- Ray