Saturday, 25 December 2010

Well, it is Christmas...

If on the previous day I had been quite energetic, Tuesday 28 September saw me back to my everyday, anaemic self, not much able to exert myself beyond small clerical tasks.

I managed to make myself reasonably useful though, spending some time advancing a couple of projects for the church where I work, both of these artistic in nature: one musical, the other relating to the plastic arts (memorial sculpture to be precise). The latter I cannot go into detail about (at least yet), but the former is a commission by the church for a 40-part vocal work setting extracts from the Diary of Samuel Pepys, our most illustrious parishioner. This is to commemorate the 350th anniversary of the start of the Diary in 1660 and the first performance will be one of a number of special events taking place at the church this year. The composer, Benjamin Till, is keeping a blog about the project, which can found here. Although (in real time) the piece has already been premiered, Benjamin is continuing the blog, which each day includes a look at what Pepys was up to on the equivalent day 350 years ago. Well worth following!

In real time, what is more, it is now Christmas Day, so let us break the narrative continuity for a while longer and end this entry with St Columba’s blessing, which dear friends have sent to us with their Christmas card. Here it is, a typically Celtic form of prayer, addressing God as an all-enveloping, nurturing presence:

Be thou a bright flame before me,
Be thou a guiding star above me,
Be thou a smooth path below me,
Be thou a kindly shepherd behind me,
Today, tonight and forever.

Happy Christmas, wherever and whoever you are…

St Columba (521-597), originally from Ireland and founder of the Monastery of Iona.
Although the monastic community was dissolved in the Scottish Reformation, Iona remains a place of great spiritual significance and pilgrimage. John Smith, Tony Blair's predecessor as Leader of The Labour Party, great valued it and is buried there.

Monday, 20 December 2010

CT results

My appointment with Dr M, the haematologist, at 11.30am on Monday 27 September was for review of my CT scan. You will remember that the arrangements over the appointment for this scan had caused me considerable grief during my stay in hospital the previous week.

The results, when finally delivered to me, were therefore something of an anti-climax, as they revealed nothing unexpected. Why on earth am I playing this down? This was of course the best possible news, as the scan showed no sign of any tumours, but only of the swellings to various parts of my lymphatic system that had been revealed by Doctor M's physical examination at my initial appointment with her on 3 September. It is strange how actually experiencing an illness differs from one's previous imaginings in those little scenarios we all play through in our minds as our brains prepare us for the ups and downs of life. Or is it just my brain that does this? Answers on a postcard, please...

So, for the record, this is what Doctor M reported to me as I looked at the shadowy images on her computer screen: low-volume cervical lymphadenopathy; significant mediastinal  and sub-axillary lymphadenopathy (worse on left); significant para-aortic lymphadenopathy; moderate splenomegaly. In other words, slight swelling of the lymph glands in my neck; more significant swelling under my armpits (worse on the left side); significant swelling of the lymph nodes in my central chest; similar swelling of the nodes in my abdomen near the aorta and on a level with the lumbar vertebrae; moderate enlargement of the spleen.

When I first saw the long words (mediastinal, para-aortic) in a written report some time later, they were more alarming than they appear now. The goal of treatment is of course to destroy the deposits of cells that are causing the swellings and I'm glad to report (breaking through momentarily from blog time into real-time as I dictate this) that the swelling in my neck, present for many years, has gone down. Progress!

Before each consultation it is necessary for me to give several blood samples, which are immediately taken away for cell counts to be measured and discussed with me when I see the doctor about 20 minutes later. I should be getting used to giving blood by now, but the insertion of sharp metal into one's person is always intrusive, if not always painful (some practitioners being better than others, but all of them operating within acceptable limits).

One effect of so much surrender of my vital fluid is that I cannot get worked up about vampire tales and am therefore more than indifferent to the current fad for these. Can somebody please tell me why they are so modish? Vampires as a metaphor for the bankers leeching us of our life savings, perhaps? Probably not: a more obvious explanation is possibly that the current vampire stars are extremely photogenic, even if their cheekbones are improbably sharp and angular. Vampire cheeks, in fact, rather than vampire chic.

Count Orlok, the vampire in Nosferatu (1922), a fine example of, er, German Expressionism.
Whatever. Definitely a host you do not want providing room service.

Béla Lugosi as Dracula (1931).
Rather more of a matinee idol than Orlok.
Squillions of dollars later, the yummy stars of the Twilight franchise.
Vampires so mainstream, they will probably soon be giving their names to jeans, perfumes and all that paraphernalia.

Upon my return home I experienced my most energetic day yet since the stay in hospital and enjoyed doing some work at home, thus helping to keep body and soul together and food on the table.

Here, breaking into real time once again, is a cartoon just seen in The Spectator.
The man in the cap is saying "They're wikileeks".

Wednesday, 15 December 2010

At my brother's house

By the early hours of Sunday 26 September I was still dreaming very lucidly as I fell asleep: Morpheus up to his old tricks. I was also rather wakeful, as I still had traces of the itching recorded in my last entry.

I was not unduly worried by the lack of solid sleep, as I was in for a gentle day at my brother's house. The rest of my family would be celebrating my wife's younger brother's 50th birthday, but I was not yet up to social gatherings of that length and liveliness.

So it was that I sat at the kitchen table in Teddington chatting to my sister-in-law and my brother, eating crisps and snacks and drinking mild Brittany cider (moderate drinking of alcohol being acceptable in my present condition). My sister-in-law is a very good cook, who always prepares tasty food, and it was a pleasure to spend time in the welcoming kitchen while a dish of lasagne was given shape and substance.

A demonstration of cider apple-pressing in southern Brittany (August 2010).
The apples (little unpromising green things visible in basket took the right) are crushed by a horse-drawn mechanism (not visible in picture). The resulting pulp is mixed with the straw visible under the ratcheted press shown here. I am not sure about the reason for the straw, but imagine it helps to strain the juice and also to confine the apple pulp while it is subjected to the relentless pressure of the press.

The juice is collected and poured into the barrel shown, from which it is drawn off, ready to be sampled by the expectant crowd.
The apple pulp and resulting juice oxidise very quickly in the open and, hence the dark brown colour. Don't be put off though; it tasted superb!
The shirts and hats are rather natty, don't you think?
 This demonstration took place at a festival of bread baking, by the way

There was no rush and the creation of the dish helped encourage my returning appetite as the room filled with warmth and aroma. When the time came to eat I was fully ready and tucked in with relish, even coming back for a second helping. Fruit crumble, which I love in all its variants, followed and this became for me a perfect meal.

The afternoon was spent in further conversation, browsing the papers and just enjoying the comfort of the house, enhanced by the sight of rain falling outside the windows. Better on this occasion to be in than out!

In due time I was ferried safely home to be reunited with my wife and family, who had themselves, praise be, had a good day.

Happy birthday, brother-in-law!

Saturday, 11 December 2010

Phased, dazed and not amazed

I woke on Saturday 25 November feeling, as Spike Milligan once (nearly) described it, like I had been hit with a sock full of cold custard. I had taken an antihistamine pill to deal with the severe itching that had assailed me the previous day. This particularly affected my arms and legs: bearable but only just and probably the result of the cocktail of antibiotics I was still taking following my discharge from hospital.

Drowsiness is a well-known side-effect of antihistamine and I felt wobbly on my legs for most of the morning. In fact I still felt pretty weak for most of the day, but not so much that I was unable to face watching a DVD of Mamma Mia with the family in the evening.

I was completely unprepared for the onslaught on the senses that this film presents, with its overwrought acting and highly saturated colour palette. It is set on a Greek island but really could be anywhere, although it has to be said that the transplanting of Americans and Western Europeans to the relatively exotic location of the Mediterranean and the permanent sunshine heighten the sense of unreality that pervades the film. The principal culprit however for that same sense is the nutty and unresolved plot, upon whose wild improbabilities the valiant crew of extremely fine actors proceed to impale themselves one by one. I really do shy away from the notion of men's and women's films, but this particular flick strains this reticence to snapping point. It is like watching a drugged-up hen party through a kaleidoscope. 

The comedy is painful and forced for the most part, but there are moments of light, not least from Colin Firth, the contrast of whose stock-in-trade English reserve with the hysteria of those around him creates comedy in itself. Perhaps more unintentionally comedic was the strangled singing of Pierce Brosnan, courageous but inevitably doomed.

Some of the cast of Mamma Mia meet to plot revenge on the scriptwriters

The whole preposterous confection is of course redeemed by the wonderful, sometimes sublime, Abba songs, which are surely among the finest creations in any music.

You know who: melodies, harmonies and arrangements to die for.
Anni-Frid Lyngstad (aka Frida, the brunette) is now in fact Her Serene Highness Princess Anni-Frid Synni Reuss, Countess of Plauen following her marriage to a German prince of the former sovereign House of Reuss in 1992. The prince sadly died of a lymphoma (type not known to me) in 1999.

The only ones among us not at all impressed by the experience were my son and his girlfriend, who would much have preferred either a more serious movie or some schlock horror (zombie flicks being a particular favourite of theirs and mine at the moment).

It was truly time for bed.

A scene from Shaun of the Dead, a great spoof zombie movie.

Monday, 6 December 2010

Food, glorious food!

I woke on Friday 24 September feeling both wiped out and with a low appetite.

In fact, I have minimal recollection of the events of the main part of the day, although they would have included my eating breakfast and lunch out of necessity rather than enthusiasm. Will you therefore forgive me if I take a small diversion to reflect on my experience of hospital that had just ended?

In some lights the account of my stay in Aspen Ward could appear tinged with ingratitude for the many acts of both duty and kindness I received from the numerous members of staff I encountered. Also, I have in recent weeks spent a number of hours viewing and participating in the discussion board set up by IWMF, which–you will recall–is the foundation set up in the USA for sufferers from my particular lymphoma. From this it is apparent that our American cousins have to spend much of their time negotiating the small print of health insurance contracts before they can be sure of receiving the treatment that they need. As you will see in due course from my own dealings with the NHS yet to be recorded here, we in the UK face our own battles to secure treatment, particularly with more esoteric substances, but our struggles are as nothing compared to those across the Atlantic. The NHS is a system that is beyond the wildest dreams of most people in the world: access to healthcare that is essentially free at the point of need, that fulcrum of stress and anxiety.

The system is of course imperfect. What is so frustrating however is that some of the imperfections should be so easy to rectify that much misery could be averted on a daily, no, an hourly basis. For example, at the root of the delay in my CT scan appointment was a clerical error by the ward over the actual time of the appointment: having been told by me of the time of the appointment and shown the hospital's own letter confirming same, some person or persons on the ward proceeded to record the time as an hour later than it should have been. This basic error was compounded by the staff administering the appointments in the x-ray department, who failed to respond to requests both for information and action from my brother and from other hospital staff. At least, I think that’s what happened, such was the tangled mess of communication that became apparent.

My fervent prayer is also that there is some creative soul out there who could address the whole issue of the soundscape of hospital life: the bleeps, buzzers, bells and hooters (all right, I made up the last one) that fill the air and torment both conscious and subconscious mind. We are so used to suppressing conscious awareness of the noises that pollute our everyday modern lives, particularly in the city, that we are for the most part unaware of the stress that has been caused to us physically and psychologically. Against my utopian instincts bottom-line, bean-counting arguments can no doubt be marshalled in profusion; nevertheless the health service of all places should be the one that addresses itself to the healthy use of sound.

What then was positive about my experience in hospital?

At the most basic and vital level an infection that could have killed me or at least made me seriously ill was defeated. For this and for all the efforts of hospital staff to attend to my various medical needs, I must remain ever grateful. There was (with one notable exception) good humour from most staff that made this potentially alienating time much easier to bear. When deficits of language placed wit and repartee beyond reach there was at least kindness.

The hospital as a whole also generally gives the impression that it is run efficiently for the benefit of patients. On entering the building there is a bustling energy that is quite palpable and itself gives one hope that here at least one will be well cared for.

Hospital food was far from all bad, the lamentable tuna salad of my penultimate day notwithstanding, although there is always, it seems, the proverbial “room for improvement”.

Sausage Casserole: my first meal as an inpatient.
6/10 for this one.
Mention of food brings us back to the crowning moment of Friday 24 September, which was chicken korma prepared in the evening by my daughter and my son's girlfriend, upon both of whom be countless blessings. Indian food is just about my favourite of all and the warm spicy aromas met my returning appetite halfway. The meal that we shared that evening cheered me no end as it was clear evidence of returning health.

My wife was elsewhere, having gone with my sister-in-law to see Così fan Tutte at Covent Garden, a welcome respite for her as well as a musical treat. For me on this occasion however a wholesome meal was sufficient pleasure and, with the company of my family added to the mix, gave me renewed strength.

A scene from Così fan Tutte by the wondrous Mozart, like so many dramas from the past a tale of mistaken identities.
I wonder if the fascination of such tales was helped by the scarcity of mirrors and the lack of photography.
Disguises of course still make for great stories: witness nearly any episode of Spooks.
Note also how steamed up we get about the sporting (if that be the word) of the niqab.

Tuesday, 30 November 2010

Get this man home!

As I had lost all track of time the previous evening, I have no idea how long my drug-assisted sleep lasted. All I know is that I woke at about 2am on Thursday 23 September with an appetite for porridge and a side order of antacid.

Rather to my surprise both were forthcoming at that unearthly hour and, even better, the sickness had clearly departed, even though my stomach felt tender. I dozed until about 5am and then took further medicine to help with sickness, this time perhaps more as a talismanic precaution than from sheer necessity, but nevertheless paving the way for further welcome nourishment in the form of Weetabix.

Good news came with a visit from my consultant haematologist during the course of the morning, who said that she was minded to discharge me today and to see me next at her clinic the following Monday. She was of the view that the sickness of the previous day had been a result of the various antibiotics I was taking. I bowed to her experience, but all the same still maintain that psychological distress aggravated my basic reaction to the drugs.

She also brought news of my scan, which was that it had not shown up anything unexpected, but confirmed her initial physical examination carried out on 7 September. You would think that, after all the strain of waiting for the scan, followed by the misery of yesterday, I would have experienced some strong sense of relief at this news. In the event, these various stresses had left me too exhausted to register any strong emotion. The only firm feeling I had was that I wanted to be at home and within reach of my own bed as quickly as possible.

By this stage each electronic bleep and buzz infesting the air of the ward in MRSA-like profusion was going right through me. In saying this I am mindful that there are people who have to spend far longer in hospital than I on this occasion; also that there sadly exists such a thing as torture. Nevertheless, I remain of the opinion that the devices necessary to modern medical practice carry with them the capacity to inflict serious psychological harm.  I have a good friend who has built a firm reputation and a successful business on working with companies and organisations to address how they use sound both in their working premises and to market themselves to the wider world.  To sit with him in such an everyday environment as a coffee shop is quite an education, as he will open your ears to the various conflicting noises: air conditioning fights with indifferent music system and vies with over-loud chiller cabinet. His name is Julian Treasure and you can find links to his various websites here and a talk by him here. In an ideal setting we would be surrounded by stochastic* noise, such as birdsong, flowing water or leaves rustling in the wind. Sounds good and nurturing, doesn’t it? Is it really too far-fetched to dream that we might create public spaces where our need for such things is addressed?

The doctor’s closing advice was that I should for the next day or so drink no more than one litre of water, as the miseries of the previous 24 hours had left me with a low sodium count.

Objectively I was on the mend, but physically and psychologically I felt wiped out. Somewhere inside however there stirred a sufficient remnant of energy to enable me to take a shower, dress myself and step out for a stroll along the hospital corridors, wherever my wobbly legs might take me.

During the course of my walk I encountered the doctor who was the first to see me on my admission to the ward. He asked me how I was doing, sensed that I was not completely well and invited me to the doctors’ common room for a chat. He also picked up my need for some reassurance and noticed that I was obviously distracted from following normal polite conversation by preoccupation with how unwell I still felt. It was clear to me at this point that being “preoccupied” is itself a state worthy of medical consideration. He offered to peruse my latest blood results and brought me the printouts.

He made efforts to establish that I had a settled intention of going home that day and it was at this point that I fully grasped that what was essential to my well-being right then was not further hospital attention but the familiar sights, sounds and people of home. I was however most grateful to him for spending his precious leisure time with me.

By this time, feeling as if I were on autopilot, I returned to my room and there found my wife. The discharge letter seemed to take an age to arrive as we were assailed once more by the diverse electronica of the ward.

Once released from the grip of the hospital, we made our way down to the car park, every moment an effort for me. I have no record of what precise time this was: all I knew was that I felt unwell in a completely unfamiliar way, vague but nevertheless profoundly unsettling. It was certainly early evening by the time we reached our house.

All I could manage at this point was to sit in my favourite chair and let the normal life of the house go on around me, taking in what energy I could from those I loved, but without any desire for food or drink other than the most simple kind.

I retired early, beyond the desire for entertainment, but relieved somewhere within my frame that my first stay in hospital was firmly at an end.

I was at least home.
Here is a belated celebratory firework.

stochastic |stəˈkastik|
randomly determined; having a random probability distribution or pattern that may be analysed statistically but may not be predicted precisely.

Thursday, 25 November 2010

A strange engine and an all-time low

Wednesday, 22 September 2010  was a day of dramas, although it seems to have started ordinarily enough.

Details of the morning are hazy but there certainly would have been a visit from the phlebotomist, the same cheerful Bride of Dracula as on the previous day, followed in due course by a nurse to take readings of my temperature, blood pressure, blood oxygen (this latter by means of an ingenious device with a red flashing light clamped to my fingertip) and my weight.

There would also have been breakfast, always my favourite meal of the day and the easiest of hospital meals to eat since there is little that can be done to inflict serious damage on such basic foods as Weetabix, toast and marmalade.

I would also have hauled myself, now of course not tethered to a drip stand, to the bathroom for basic ablutions. 

I made various efforts during the morning  to chase up my CT scan appointment, including an unsuccessful attempt to speak directly to the clerks (are they still called that?) in charge of the arrangements. Again my frustration grew, although it was largely unvoiced for the moment as I had no audience until my wife arrived after lunch.

Speaking of lunch–and I would rather not–I felt my appetite waning and so ordered what I thought would be the least offensive option on the menu: a tuna salad. I must not blame the humble ingredients of the salad or even the people who prepared it for what was to follow, because I believe that some damage was already working its way through my system by this time. Nevertheless, eating dry, rather bitter-tasting, tinned fish together with undressed salad was truly awful and I had to force it down in the hope of securing nutrition, if not pleasure. As I dictate these words two months after the event, I can still taste this dismal meal.

MY unmade bed.
Tickets to view now on sale...

I wish I could say that I behaved nobly when my wife arrived after lunch but I am afraid that I treated her to a display of temper that should more properly have been directed against “the system”. I should explain why I was so anxious to have the CT scan carried out. When the haematologist examined me during her initial consultation on 3 September she found that my spleen was swollen and that I also had swollen lymph nodes in my left armpit and groin. I was concerned to know the precise extent to which my internal organs were affected by possible tumours, not least because she had advised me that the disease had been working its way through my system probably for the previous five years or so. The scan therefore had prognostic implications that I was concerned to nail down as soon as possible, even though the swellings revealed by examination appeared mild in all the circumstances.

Following my rant however I felt the first real stirrings of nausea and went to the bathroom where I coughed rather inconclusively, but with a taste of acid, into the toilet bowl. Not having any cause to which to attach this latest development, I concluded that I had got too worked up and so agitated a digestive system made delicate by the cocktail of drugs I was taking.

Eventually–and I wish I could remember the precise time–I was told that a porter would shortly arrive to take me to the X-Ray department. It was a great relief when the gentle porter appeared with a wheelchair and I could sit in it for the journey down a few floors for my next encounter with modern medical technology.

The porter left us outside the scanning room and, before it was my turn, I watched two other patients entering for their scans and observed the changing of the illuminated warning signs from white to red when scanning was in progress. I also saw laughing clerks (surely not called that!) emerge from their office and I felt a rise of resentment, justified or not, at what I perceived to be their complacency. Time and again have been disappointed by the failure of people to understand the expectations and anxieties of customers, end-users, clients (whatever) and to take reasonable steps to manage them. In saying this, I am sure that I have let people down in similar ways, but in my personal and professional lives I have always tried to carry in mind the hopes and fears of those who are depending upon me for action, response or information.

I felt another wave of nausea, this time more powerful, and asked my wife with some urgency to find me one of those cardboard bowls that are such a necessary part of hospital life. Bless her heart, she found one very quickly and into it I duly threw up, experiencing the relief that follows such episodes, even if there are to be more to follow, which there were on this particular day.

The respite did however enable me to enter the scanning room in a better frame of mind and I was greeted pleasantly by one of the radiographers and a nurse who now came to attend me. I lay down on the stretcher-like platform that runs through the scanning device and the canula and associated needle were removed from my arm, as they were no longer needed. The strong sticky tape that had held these in place was rather more difficult to remove and not a little painful as it took arm hairs with it.

I was given an injection of iodine-based contrast medium with a warning that this would make me feel warm inside and that this feeling would spread to my nether regions. Indeed it did, although the resulting sensation was not so much pleasant as disconcerting, since the warmth mimicked urinary incontinence. I was then asked to raise my arms above my head so that I would fit through the ring in the scanner when the platform moved through it. Each operation of the scanner was preceded by a pre-recorded request to hold my breath and the moving platform then did its thing, shuttling gently back and forth.

There were some bleeps and flashing lights, but the process was soon over. As I prepared to leave this area of the hospital, I noticed two radiographers looking intently at the images just taken of my insides. Although these images were of my inmost parts, I was not destined to see them until the haematologist reported on them some weeks later. In these small ways the system takes away elements of our control, although we generally perceive this as normal and so give permission for it to happen, because it is for our good, or so we hope.

A typical CT scanner
This requires a man to travel through a donut, rather than what is more usual...

... a donut travelling through a man.

Soon enough I was back in my room and my wife left me to get some refreshment in the cafeteria. While she was away further nausea assailed me and once again I was sick.

I can no longer recall the true sequence of events that followed, other than that my wife went home, to be replaced by my brother and by my son and his girlfriend, who had to witness me becoming increasingly distracted by nausea of growing intensity, climaxing in a final session of vomiting, this time comprehensive and cathartic. Do you really want to know all this, I ask myself? The only justification I can give is that this was how this particular day shaped up.

My brother—the retired, but ever attendant physician—was by my side throughout this last episode and surreptitiously monitored my pulse, which he assured me had held strong. Even though I felt drained by this last episode, in my depths I felt reassured that I was coping.

Shortly afterwards my son and his girlfriend had to leave, while my brother stayed to ensure that I was given the means to make it through the ensuing night. We made a request that I be examined by a doctor on call, who eventually came and, after discussing various options, prescribed a mild sedative. My brother stayed until satisfied that this was taking effect and I was finally granted a peaceful night’s sleep.

All track of time was lost, my stomach was sore, but I sensed that things were now, however tentatively, moving on an upward course and into a sunnier landscape.

Saturday, 20 November 2010

Messed around on a day of wonders - Part 2

I will just to break into blog time in order to announce that I am, from today, using a new toy in real time, namely dictation software. Utterly fed up with my dismal efforts at typing and multiple errors, I have decided to throw in the towel and to cast myself upon the mercy of technology.  It works well beyond my wildest dreams–very clever stuff!

You will remember that, upon my admission to hospital the previous day, I had told the ward staff that I was due for a CT scan on the day that I am now telling you about, Tuesday, 21 September 2010.  I was confident that the message had got through because, as directed in my initial appointment letter, I would from seven in the morning not be taking any food by mouth. The breakfast I was about to receive therefore would be my last for several hours. The ward sister who took my order allowed me to push the boat out and have tea, orange juice, no less than three Weetabix, toast, marmalade and a side order of medications.  I even got to listen to the Today programme.

Bringer of free radio

At 7:50am I received a visit from a very jolly woman who announced, with a mischievous giggle, that she was a phlebotomist, otherwise known as “one of the Brides of Dracula”. She went on in this vein (pun fully intended) by telling me that one of the samples she was about to take from me would be used to make black pudding while the other would make a high-quality Bloody Mary. Our subsequent conversation was more serious and during it she told me that a friend of hers had recommended that she take up this line of work as she would be “good at it”. As she did an excellent job of taking my blood without undue pain, I concluded that the friend had been right. Some people would deprecate the sense of humour that the worthy phlebotomist deployed, but I found it an admirable antidote to the institutional rigours of hospital life.

 I was saved from an account on the radio of the last days of the premiership of Gordon Brown by a nurse coming to change my bedding—this was luxury indeed! After a brief wash and the cleaning of teeth, accompanied always by the nagging drip pump, a pharmacist came to take away my medications for checking at about 9:35am.

The first sign that the message had maybe not got through that I was to have a CT scan that day came in the form of an inappropriate offer of a cup of tea at 9:40am—you will remember that, by now, I was “nil by mouth”.

My wife phoned at 10:05am to say that she would be able to visit later. My brother phoned at 10:19am to say that he would be coming in to accompany me to my CT scan appointment. The Friends of the hospital called by with their shop trolley at 10:59am, but I was not at that moment in need of anything that they were offering for sale, although I was glad of the social interaction their visit afforded.

Cordon Sanitaire
Wash hands before passing this virtual barrier - prudent but a bit alienating!
A  charming doctor previously unknown to me called on me at 11:05am and told me that my neutrophils were low at 1.2. I was therefore in a state bordering neutropenia and thus had a significantly impaired resistance to infection.  This was, as you will appreciate, very alarming to me, but the good doctor seemed to take it in his stride. After a further occlusion of my drip line, I was very glad to see my brother coming into the room at 11:25 AM, bringing with him a copy of Private Eye and a bag of licorice All Sorts.

My beloved elder brother (lower half)
My brother took it upon himself to chase the CT scan at 12 noon and later at 12:30pm. When I was, shortly after this, inappropriately offered lunch, I found myself becoming increasingly angry and frustrated, my CT appointment originally having been fixed for 11am. In this otherwise excellent hospital it was apparent that mistakes, albeit not life-threatening, were being made.

The situation drifted yet further into Kafka territory when, my brother having pointed out to staff that I had been “nil by mouth” since 7am, I was given a meal. Apparently the “nil by mouth” instruction is given to outpatients but does not apply to inpatients; presumably it is given to outpatients in order to impose some uniformity on the great group of people who might otherwise present themselves for scans having eaten or imbibed all manner of inappropriate substances.

My wife arrived at 1:25pm  and I was taken off the drip at 1:40 PM. At 3:17 PM my brother, who had already been so giving of his time and energies, had to leave.

I was told that the scan would definitely be carried out today and that it could be done at any time as I was an inpatient. My frustration only deepened at this, because I was left wondering who had taken my original morning appointment. It was apparent that I would have another night in hospital and so I asked my wife to bring in more of my personal effects the next day. Supper was a quite pleasant dish of meatballs, followed by a banana.

There was a gentle interlude as my wife read to me Alan Bennett’s touching tribute to Russell Harty. It is funny how this enforced rest has provided my wife and me with opportunities for quiet and gentle companionship that can be so easily lost in the rush and commitments of everyday life and work. I make an inner vow that we will make more time for each other to enjoy these moments, whether in sickness or in health.

At 7pm my daughter, son and his girlfriend arrived.

More legs (son, his girlfriend and my wife)
Across the hospital road from the block in which Aspen Ward is situated lies a large building housing mental health facilities. One of the inhabitants of this unit now began a lengthy solo on a West African djembe drum. What he may have lacked in technique and finesse he more than made up for in passion and a growing intensity to his playing. I was moved that he was using these ancient means to send his voice out into the night air and the universe beyond. Had I had my own drum with me, I would have put on some warm clothes and gone over to join him and I am sure we could have made good music together. I was uplifted by the craziness of it all and gave thanks that the ancient simplicities of the drum have been adopted so readily in our technological culture as a tool for healing and communication.

A djembe
Widely adopted by amateurs and professionals: accessible to the former and and awe-inspiring under the hands of the latter.
Highly responsive to the slightest touch and with a thin head, yielding cracking high tones and resonant middles, its goblet shape also permits bass notes of a visceral intensity.
As the playing continued it was now finally apparent that I would not have my CT scan today, the radiology department having by then closed. We now learned that the origin of the problem with my appointment was that the ward noted it down for 12:45pm rather than the correct time of 11am. You will have noticed that this entry contains many references to specific times. One of the characteristics I noted about my hospital experience, even one as brief as this, was a creeping institutionalisation and a greater awareness that the day was marked out by divisions of the clock.

NHS-issue clock.
Ironically, it is branded "niceday".
Hmmmmmm... I'll get back to you on that...

After a discussion about arrangements for the following day my wife and daughter departed at  8:05pm, shortly followed by my son and his girlfriend at 8:45. My temperature was 37.1° (that is to say, still elevated). By 9:20, it had risen to 37.5°, but my other vital signs were normal. As my drip had been removed, the lines into my arm were now taped in order to prevent them dangling, getting caught up in clothing and bedding and causing discomfort.  As it happened, they would not be reconnected during the rest of my stay.

My wife telephoned at 9:45pm to wish me good night and I asked God to be with me and to help me through the hours of darkness that were to follow. By 10:33 PM I was tired and requested that my lights be turned out.

The drummer had stopped playing some time ago and was now replaced by a deeply distressed woman, whose howls of anguish, directed at some nameless other, grew ever louder and more agitated as the night deepened. Eventually she fell silent, giving way in my consciousness to the silence of the night, broken this time by the bleeps and buzzers of the ward, another form of torture.

Monday, 15 November 2010

Messed around on a day of wonders - Part 1

At 2.15am on Tuesday 21 September I was awoken in my, as yet unfamiliar, hospital bed by the all too recognisable caustic pain of acid indigestion. I addressed this by the tried and trusted method of not so much grinning, but yet definitely bearing it.

By 2.40pm the promptings from my bladder could no longer be ignored and so I unplugged the pump driving my saline drip—no more intravenous antibiotic by now, just pills to swallow at regular intervals—and pushed the reluctant drip stand along with myself to the en-suite facilities (ah, there was some luxury!). Drip stands revolve as they are pushed, so that quite some effort is required to prevent the various tubes going into one’s veins from wrapping themselves around the pole and drawing one ever closer to the hardware. This is irksome.

As soon as such a pump is disconnected from mains electricity, it sounds a warning bleep that gets louder and more frequent after what seems like two minutes. This is not enough time for a debilitated patient to make it to the loo and back: lifesaver therefore becomes something of a tiresome scold. I managed to make it back to bed before discovering whether there was a third level to the pump’s nagging.

This little episode prompted some musings on organic and digital mechanisms. I am analogue, organic, while the modern pump has a digital face and berates me digitally for unplugging it to answer a most bodily call of nature: the pump is like an interface between two worlds. I was trying to reflect further on such things when the pump exhibited a yet more objectionable behaviour. For some reason, the line from the drip into my arm became blocked—this is called ‘occlusion’— and the pump, whose normal operation was a gentle ticking rather like the lullabyish creaking of a hammock, turned itself to a louder bleeping and a brighter flashing than ever before.

Your generally friendly bedside pump

This prompted a very organic rebuke from the male nurse who now hurriedly entered my room to investigate and rectify the problem. Thing was, though, I had been trying religiously to keep my right arm straight by my side so as not to kink the drip lines.

My efforts to maintain the posture increased still further after the irked nurse left the room, notwithstanding that this was inimical to sleep. What choice  did I have therefore but to carry on musing? I therefore adjusted my bed, using the handset provided, until it resembled a hammock and tried—with some success—to imagine myself suspended between two shady branches of a spreading cherry tree in Brittany.

There came to mind that famous drawing by Leonardo da Vinci of a man framed within a circle. You know the one…

Vitruvian Man (Leonardo da Vinci, c. 1457)

It was then, readers, that musing turned to vision, as I saw the technological pump as an interface between two worlds: the organic and the machine. As the vision deepened, Leonardo’s figure became in my mind the link between the worlds of the macro (the vastness beyond imagining of the universe) and the micro (the cells and atoms within his own body). Only humankind, so far as we know, has the capability of thinking about these two worlds, of their relationship and of the spaces in between them, along with the questions of meaning and significance that such contemplations give rise to. I saw lines projecting from the hands of Leonardo’s now animated man into the infinity of space and sensed his questing for both knowledge and understanding. I am afraid to say that I saw Richard Dawkins and his confrères as wanting to forestall such thinking, to cut the lines radiating from the man’s hands and to occlude dialogue between science and faith, even to the point of doubting whether people of faith can be true people of science.

Maybe in a search for ammunition and most definitely because sleep was now very unlikely I plugged headphones into iPod (aka iPhone) and rustled up iTunes—are you groaning yet? Loaded on the pod/phone were podcasts (oh, heaven help us with this terminology) from Oxford University. I listened to part of a set of philosophical seminars addressing the existence of God in the light of the arguments against His existence propounded by Dawkins in The God Delusion. I will not attempt to rehearse the various arguments pro and con here as I am (a) still listening to and digesting the podcasts and (b) very rusty at philosophy (begging the question of whether the mettle of my reasoning mind was ever very shiny at all).

I also watched some video: part of an introduction to Old English. Sleep came no nearer, until at 5.20am it was time for the nurse to come back and start a new drip at 5.20am. Here is the alarm with which the pump summoned him.

In my dealings with him and his colleagues I was conscious of feeling at a disadvantage, not yet being used to the life of the ward or of the hospital at large. My manner reeled between fawning and assertiveness and in this I sensed the first stirrings of the institutionalisation that was to stand me in bad stead over the rest of my enforced stay.

A new day had begun for me some hours previously, but now the dawn had arrived…

Monday, 8 November 2010

The Deeper NHS

On Monday 20 September I woke with similar symptoms of restless digestion to the previous day and so had another drink of milk, honey and spices. I felt detached, lacking a sense of connection with my surroundings and with our cat, who came to sit by me.

May she live forever.

I was for a while distracted by the beautiful black cat that wants to adopt us and who made another one of her increasing number of appearances this morning. We have since learned that she has the unpromising name of Frida.

Something was awry, but elusively so.

My wife was about to set off to see her mother, who did not yet know our news. I was lying on the bed, having washed a dressed, when she remarked that I felt rather hot and that it might be a good idea to take my temperature. The mercury—we have since acquired a digital thermometer—that made its way from the bulb up the fine glass tube flanked by a numbered scale fine glass tube showed that I had a temperature in the region of 38 degrees C,. This was above the level at which, I had been advised, I should present myself at the A & E Department of the hospital where I was being treated with a view to receiving intravenous antibiotic. The most likely cause of the raised temperature was that I was in a state of neutropenia (lowered number of neutrophils, white blood cells forming a cornerstone of the body’s defences) and that I had an infection beyond the capabilities of my depleted immune system to defeat. The nagging cough, present at diagnosis, had diminished but not gone away; it had been biding its time, the sneaky little bugger, ready to take a life-threatening hold on my person.

There was nothing for it, even though I felt marginally better than yesterday. I assembled a few personal possessions and we made the 25-minute or so journey down the motorway to the hospital.

There is something about the words “cancer” and “oncology” that opens doors in the current NHS, a sort of  “drop everything and roll out the red carpet” approach. So I found when we presented ourselves at A & E reception and I explained why I was there. My voice gave way a bit when I answered two particular questions: “who is your next of kin?” and “what is your religion?”. Both of these are questions of great significance and emotional freight, putting us on the spot about our deepest concerns, values and relationships.

I was directed to a small side room where I could wait unmolested by the coughs, cuts and sneezes of the rest of those waiting for medical attention, no doubt weighed down by anxieties and insecurities of their own. I did not have to wait long before being ushered into another room, where the triage nurse took some personal details, as well as my blood pressure and temperature. Another short interval and I was directed to a further room, given an ill- fitting hospital gown (who designs these things?) and invited to lie down on the bed. The room was the only one available that offered privacy, but was chilly, its main purpose being the storage of plaster (for casts), dressings and other supplies. A polite notice to leave the sink tidy had been ignored.

My wife re-enters the chilly holding room, where I have my feet up.
I have since learned that it is a bad idea for someone in my condition to cross their legs, or even feet, because of compromised circulation. One by one life's little pleasures are eroded.

I was seen by a succession of staff, who took blood samples, measured my blood pressure and were all extremely kind. There were several Philipinos with soft hands and gentle voices and an Irish nurse of such surpassing rosy prettiness that Kerrygold would make a (further) fortune if they snapped her up for a marketing campaign.

In due course—I lost most sense of the passage of time—a young doctor appeared, spiked my arm and fitted a catheter ready for the drips of saline and gentimicin (antibiotic) that would enable me eventually to regain my freedom and the comforts of home. It was becoming increasingly obvious however that I was shortly to become an inpatient. I suppose I am quite lucky to have reached the age of 55 and not had that experience, although psoriasis since the age of 17 and other issues over the years have meant that I have become familiar with a significant variety of outpatient departments.

Tubes in place, ready to be plugged into the mainframe.
"We have the technology; we can rebuild him."

The drips were set up: another new experience, as I watched the flow of healing fluid into my punctured vein.

Eventually, a porter appeared and I, with drips still doing their stuff, was wheeled to a ward with the inviting name of Aspen. Few experiences speak more of dependence than handing over the care of one’s primary mobility to another and my impression was that people in the corridors on the a way to the ward made way for our little group while at the same time avoiding my gaze.

I was to have my own room in the ward, because of my immuno-compromised and ditto-suppressed status. After a short wait while the room was made ready and the ward sister assured me that I was expected, in spite of appearances to the contrary.

Spacious and clean. But inviting?
The notice is to remind all entering the room to be clean their hands using the basin provided.

A very good banana, following one of the better meals I had in hospital, a sausage casserole.
Whoever designs hospital easy (ha!) chairs should be strung up, by the way.

During this time, I sought assurances from staff that nothing would hinder my having the CT scan for which I had been scheduled as an outpatient the following day. The assurances were given, but the hollowness of these and the consequences for my morale and wellbeing would take some time to emerge.

I stress that this was an excellent hospital, spotless and air-conditioned and with a strong sense of purpose evident among all staff. Certain people however were destined to drop the ball.

More immediately militating against comfort and repose were the loud buzzers that sounded as patients on this large ward summoned nurses, the alarms only being cancelled and so silenced when the nurse reached the bedside. This was to become a significant problem, but that is an account for another day.

Friday, 5 November 2010

Interlude the Third

Readers, once again I must ask for your patience.

Blog time is still running and every day I make notes for what will become that day’s entry, so the groundwork is being done. There are periods however when real time is just so crammed with stuff—not all of it bad or difficult or both—that I have to process and assimilate that the substantive business of writing must wait.

I have been passing through just such an interval since my last post, but will be back with more words and pictures just as soon as I can.

Harold Lloyd (1893-1971) – hanging on...
He was famous for doing his own stunts, as should most of us be (most of the time, as it happens).

Saturday, 30 October 2010

Early morning milk and honey

In the early hours of Sunday, 19 September Morpheus (or perhaps some other member of his rather suspect family) dished up a most unpleasant nightmare.

In the dream someone very dear to me was staying at our house and was taken violently ill. I am not going to say who was; even such a fleeting vision distressed me that much, so great was the aura of fear and indignity that surrounded it.

To anguish was added inconvenience as I immediately woke up. It was 5am and I was feeling the all-too-familiar symptoms of acid indigestion: sharp pain and a burning sensation in the chest that periodically gives way to a dull ache. This has been a feature of my life on and off since my teens, bananas then being quite likely to trigger an episode. For some time before my WM diagnosis the frequency of attacks had subsided but I still have a supply of omeprazole—a proton pump inhibitor (“PPI”)—a pill not a machine—at hand to quell the production of stomach acid. Excess acid and reflux of it into the oesophagus are a risk of steroid medication and, as you know, I am currently on prednisolone and have been prescribed lansoprazole (another form of PPI) to address the problem. This last is the first pill I generally take on waking and so I did on this occasion.

I also had lower-back pain: quite a frequent visitor, that one. Hypnos having therefore definitely absented  himself for the time being, I decided to add self-medication to what had been prescribed and went downstairs to make some stomach-easing warm milk spiced with clove and cardamom and sweetened with honey. This concoction generally helps but its taste is also very pleasing. My hope was also that this ambrosial drink would entice Sleep back. Greek or Teutonic archetypes—I am not fussy, just so long as they turn up when wanted and make themselves scarce when not.

I hesitated to include the spices because I had just seen guidance from The Lymphoma Association indicating that peppercorns can be harmful to the interests of immuno-compromised individuals. It is true that spices can play host to pathogens, but I leaned in favour of admitting clove to my drink as I was mindful that it had a long therapeutic history, traditionally as an anaesthetic nostrum for the sore gums of infants, but with a more recently recognised role in the reduction of bodily cholesterol. Cardamom’s refreshing warmth makes it a favourite with me but the rest of the family do not share my enthusiasm. I sometimes however sneak it into my cooking by grinding it up, although nothing really beats the joy of biting down on a whole pod!

Here is the drink just after the honey was added.

Beware the lurking peppercorns...

I went back to bed—my stomach feeling more settled—and dozed pleasantly for a couple of hours or so.

Soon enough it was time to set off for church and to continue the dance begun the previous Thursday evening. The congregational worship was powerful and joyous and I was able to play with a forcefulness and assurance that belied the weakness my body felt.

The sermon was by a visiting speaker who has been involved extensively in developing the Alpha Course (an introduction to the basic elements of Christian faith). One of her key points was that challenges change us, while another was that Christians need to ask themselves how desperate—her very word—they were to seek Jesus: in other words to involve him in all areas of their lives, not just those they found convenient to expose to the searching divine light.

Then she dropped this bombshell, summarised as: “If you were given a terminal diagnosis now, what would you do differently? I suggest that you would live every day as if it were your last”.

I could have leapt straight to my feet and taken the platform to tell my recent story. Culturally, basic Englishness restrained me as did, more seriously, a strong intuition that this was not the time to bring my news to a wider audience.

Readers, my case is not as yet terminal, but I have a disease that is already nasty and fraught enough with possible complications to prove deadly if left untreated.  I will however now tell you what I would otherwise have said if I had been given the microphone: that what fell away from me more or less in the instant of receiving such news as we all fear was a lot of unwanted, time-wasting rubbish. The accompanying risk was, as I have previously recounted, to travel the whole range of abandonment and succumb to despair, losing sight of things of lasting value and importance: matters of heart, value and intellect. If however we can step back from that sheer drop into inconsolability, the hope is that we will be able to turn around and see just what a glorious green, flower-strewn, sunlit meadow we have been standing in all along. What is more, we are free to move at will in this landscape and linger before whatever sights attract us there, to feel the gentle breezes and catch the distant sounds they bring to our expectant ears.

I continue to experience this landscape each day, in spite of the temptations, mercifully few, to go back to the dark precipice: such come when there is bad news from the world at large or in moments of nausea, in bouts of vomiting, or even in the sheer tedium of continuing symptoms and of having to take so many drugs. I cannot ignore that I have cancer and that this has changed my life in ways that are not always welcome, but there is a nugget of gold hidden in the dungheap.

We dare to believe that God came down to the dungheap  at a moment in history and in the person of a man, so that we might be raised with him to eternal glory.
There will be jokes in this blog, but this is not one of them.
I was about to go through a darker few days, but for the rest of that Sunday I was blind to the implications of the excessive body heat, the extreme tiredness and the partial loss of appetite that gripped me on my return home from church. Tomorrow was another day…