I get the needle, and then home...

You left me in the hospital café trying to digest a leaflet explaining my newly diagnosed condition.

After making of the information what I could, I made a half-hearted attempt at normality by playing the easiest of games on my phone, all the time my eyes bursting with strain and shock and feeling hot and red with the tears I just managed to keep from flowing.

Soon I let my legs carry me outside to the sight of grass, trees and sky and it was in the open air that all my defences fell apart. Deep from the centre of my being came a cry of…what? To call it despair would be to endow it with a certain poetic quality, a sense of nobility, a dying melancholic sigh. What I actually felt was a crushing sense that my life, my plans, my desires to better myself, to contribute, all amounted to precisely, absolutely nothing. I do not know if the people clustered in various groups around the hospital entrance noticed my distress but I was beyond caring. Still however the tears did not flow.

The moment was, in the mercy of these things, brief. I knew that I was in the middle of a diagnostic process and that there was more work to do on understanding my new situation and dealing with it. I made my way back inside and took the lift once more to the specialist clinic, where, after a short interval, Dr H appeared and ushered me back into the consulting room.

The determined among you can find footage of bone marrow biopsy on youtube and there is a useful description here. All I could do in the moment was submit to the process, which was carried out under local anaesthetic while I lay on my side, legs drawn up in an aptly foetal position (“Mummy!”), facing the wall. Dr H had the courtesy as well as the good practice to ask me  before beginning whether I was apprehensive about my diagnosis or the procedure. My answer, in a small voice, was “both”. I had dared to take a brief look at the needle that would be used to draw samples from the core of my posterior iliac crest—a large flat bone in my pelvis—and had swiftly turned away, having confirmed to myself that it was of a size to startle a seasoned carthorse.

Once the anaesthetic had set in and she had established that I would be best helped by carrying on as normal as possible a conversation throughout, Dr H set about her important work. Amid talk of children and spouses and, briefly, of faith (she Muslim, I Christian), what I felt for the most part was a fair amount of pushing and manoeuvring, with an occasional stab of something much nervier, these unwelcome moments always being preceded by the gentlest of notices from the excellent doctor. Soon enough though it was over and, after stemming the bleeding and applying a dressing (“no water on this for 24 hours”), Dr H told me I was free to go. I might find paracetamol effective to manage the aching that would ensue once the anaesthetic wore off.

On the journey home I let the sat nav do most of the bullying and my route took me along some soothingly green and leafy roads.

My wife was at home, she herself having had a blood test. I closed the kitchen door behind me and collapsed into a chair. This time the tears flowed as I gave her the news, all the time apologising for being the bearer of it and once again being the bringer of sadness and complication to my family. My daughter came in and we told her the basics of my condition: no mention of cancer at this stage, just keeping it positive.

As normal as possible an evening then followed, the only detail of which I can now remember is trying to salvage crumbs of normality from the heap of this particular day by watching “the Great British Bakeoff” with my daughter. Warm thoughts of baking smells gave some consolation.

And so to bed, but not to sleep, much…

“Halfway through the lifetime of our years

I came to, in a dark and sombre wood…”

Dante, La Divina Commedia, from Canto I (tr. Graham Fawcett)

More time with the medics

Time now to return to the events of Tuesday 7 September 2010 and you will recall that I am in the consulting room of my haematologist. Let us call her “Dr M”.

Some time during the proceedings a younger woman had slipped into the room, unnoticed by me. Doctor M now introduced her as “Dr H”, explaining she would be carrying out my bone marrow biopsy in about an hour. I was assured that I would be able to drive home after the procedure and—oh, the joy of small mercies—that it should not be necessary to extend my allowed time in the hospital car park.

Dr M then took me briefly through an explanatory leaflet about my newly diagnosed condition, which she handed to me to read more fully in the 50 minutes or so that now lay between me and my next meeting with Dr H. You may read the text of the leaflet here. She drew my attention to the existence of The International Waldenström’s Macroglobulinemia Foundation (IWMF), based in Florida but with an English membership (about whom more in several entries’ time).

That, for the moment was very largely that. I shook hands with Dr M to close the proceedings and found my way back to the lift and from there to the hospital cafe near the main reception on the floor above. I needed refreshment. It was clear by the time I was paying for a bottle of still water and a cereal bar that to the foggy malaise created by my existing physical symptoms had been added a full-force blow to my central core of confidence. I read and re-read the information leaflet, half-taking in and then losing grip on the facts I so badly needed now to understand if I was to have a sense of how my life would be from these moments on…

To boil things down, about five years ago certain B-cells in my bone marrow took it upon themselves to start producing abnormal quantities of an otherwise desirable paraprotein called immunoglobulin-macroglobulin (IgM). Herein lies the malignancy of the disease, that this rather large molecule accumulates slowly but surely in such profusion that it silts up the circulatory system, leading to the complications described in the leaflet as the resulting inefficiency of the system leads to organ damage and ultimate failure. The goal of treatment is to suppress the production of the abnormal protein so that balance may be restored between the many different constituents of the blood. My son drew the protein or me a day or so later, but I include the cartoon here, having added certain facetious elements designed to help me cope with all this drastic news.

The medicines I would receive the day after next from Dr M, assuming diagnosis could by then be confirmed, would therefore be my very own WMD: Waldenström Macroglobulinaemia Destroyer. Please bear with me if, on those rare occasions when I mention the condition's name in full, I use the English (and ultimately Greek) spelling of "macroglobulinaemia" and retain the second "a" in that word. Around such small pivots does my peace of mind sometimes revolve.

The narrative of this day will conclude soon, but please forgive me if I slope off to bed now. I am very tired.

Normal proteins make their views known to a member of the enlarging IgM community, shortly to be ejected by the incoming boot
(artistic and many other debts to the late Spike Milligan readily acknowledged)

Dr Waldenström will see you now

The story has now reached Tuesday 7 September 2010 and I am writing this almost exactly three weeks after the event.

Even bad days are a mixture. Maybe it is the inner knowledge we have that this is so that enables us to rise at all from our beds each morning. So it was that I awoke to the prospect of a gentle morning’s work at home, to be followed by a quiet drive in the early afternoon into the leafy Surrey suburbs, rather than to the usual torrid hack into the bowels of the City followed by the increasingly effortful climb up the ramp out of Bank Tube and into the rushing masses on Lombard and Fenchurch Streets.

I wish I could report to my bosses that my morning was more than usually productive as a result of these auspicious circumstances, but this turned out not to be the case, as every intuition told me that my appointment this afternoon was likely to be of an unusually serious nature. Nevertheless, clinging to my waning hope that iron pills would be the order of the day, rather than any other more potent remedy, I was able to do some work before the time inevitably arrived for a snack lunch and departure.

As I was driving to an unfamiliar place, I relied on sat nav, which I succeeded eventually in bending to my will, that being the normal pattern of my working relationship with the device. The hospital car park is (as I have since discovered) constantly full and so I was slightly late for the appointment, which was at 2pm. I telephoned from the car park to make sure that the doctor would know I was at least in the grounds, but need hardly have bothered as it appeared, when I reached reception, that I was the only person on the list that afternoon, my mood having by that time been further subdued by seeing the label on the wall identifying the clinic by its actual title of “Haematology-Oncology”.

After the tiniest of intervals the specialist ushered me quietly into her consulting room, which was pleasant and spacious enough, containing several chairs and her desk (with inevitable computer) as well as an examination couch. We shook hands, sat down and she proceeded to deliver her uncomfortable news with admirable skill, swiftness and clarity. After briefly confirming that my haemoglobin was indeed low—9.8, whereas 13 would be normal, thus confirming that I was anaemic—she moved to mention of my white cells, at which point I lost full control of my feet, which started to shuffle restlessly back and forth across the pleasant green carpet.

I said, “I don’t like the sound of this" but the good woman would not be deterred by my obvious distress from the admirable directness of her ensuing communications, which were to the effect that the white-cell counts and the presence in significant amounts of a particular protein pointed in the direction of a rare, specific, but treatable, condition. At this point, I calmed down somewhat, although it was clear by now that my normal foundations were sliding beneath me and that my inner world was tilting at such a strange angle that its landscapes would never now appear as they had before and that I would soon be in search of new vantage points and places of safety.

I asked whether treatment would be sufficient to eradicate the disease and she wasted no time in making it clear to me that a pattern of remission and recurrence would be the norm, as we were dealing with cancer. Before this the only forms of “liquid” cancer I had known of were leukaemias and the three cases known to me personally, one in a particularly dear friend, had all been fatal. With the speed and lucidity that was eliciting my growing admiration, the doctor assured me that my condition was not that ‘L’ word but another: lymphoma. To give it its full name, the diagnosis was Waldenström Macroglobulinaemia, so we will with a measure of relief call it “WM”, one of 20 so-called non-Hodgkin lymphomas. Slow developing, it had probably been building up in my system over the last five years to the point where it was now declaring itself in symptoms such as: exhaustion, breathlessness, night sweats, blurred vision, dizziness, mental confusion and impaired concentration. Although she seemed slightly surprised that the extent of my symptoms had not led me to seek advice some months before, rather than leaving detection to the random timing of a routine blood test, she told me that now was the stage at which treatment would normally be started.

She said that a bone marrow biopsy would be needed to confirm the diagnosis, which she should be able to confirm in a couple of days and so we would meet again then. For the moment, she would need to take more blood and give me a brief physical examination for swollen glands. So for the second time in five days I felt a needle go into the skin of my inner elbow as I clenched my fist to make the giving vein palpable, this time giving two samples, each rather larger than the little offering I had so blithely donated to the system on the previous Friday. The specialist’s cool, calm hands swiftly identified an enlarged spleen as well as some palpable glands under my left armpit. Some time within the next 10 days I would be having a CT scan, which should reveal the full extent of swelling in my lymphatic system, a circuit whose vital importance remains in inverse proportion to the meagreness of my understanding of its activities and functions. She assured me in the meantime that my liver and kidneys did not appear to be compromised and that my blood platelets were showing no signs of disease.

My business at the hospital that day was indeed far from over (bone marrow biopsy needed, remember?) but I am going to continue the narrative in another entry, which I will begin very soon. In the meantime, what better company for me to leave you in than that of the good Doctor W himself?

Dr Jan Gosta Waldenström (1906-1996)
Seen here in 1944, he identified the common elements of WM from two similar patients he encountered that year. To think I had imagined a Professor Calculus-type lurking behind pebble spectacles!

Interlude the Second

“What is this man up to?” I hear you frustrated readers cry. “And, just when it was getting interesting.” Or so I fondly like to think you think.

Patient readers, I am not playing silly bloggers, but have recently ventured deeper into the NHS than I had expected by submitting to four days in hospital. “Farther up and farther in” as CS Lewis once wrote of a rather more blissful land. Not a completely ghastly experience, to be honest, and certainly necessary to avoid the risk of putting my immune system into meltdown, but nevertheless debilitating in many aspects, as I shall recount for you when the time comes. I made numerous notes and took quite a few photos. Ladies and gentlemen, there may be even be movies.

Normal blogging service will resume shortly. In the meantime here is another picture, from 1973 this time, of the famous Frenchman who lent his face to our last interlude. Best wishes to you all.

Our famous Frenchman, not entirely well by this stage of his life. The company he is shown in, though doubtless highly toxic to countless other poor souls, has nothing to do with his illness.

An unexpected phone call and a choice gift

It is time to proceed further and at this point I will heed my kindly critics and clarify the chronology of this story. The narrative, being written—inevitably, for reasons that will become clear soon enough—some nearly two weeks after the events recorded, has now reached Monday, 6 September. In other words, we are moving to the next working day following the date of my blood test. The week moved fast for me from this point and, while I hope that this speed will be mirrored in the rate at which the posts after this one appear, it is always possible that my energy will desert me at points; mind you, I am perfectly capable of faffing around with the best of them!

This particular Monday dawned as they do with all the familiar feelings on my part of reluctance to emerge from under the duvet and face the week. Even though the morning was not warm I was, at I had begun to notice increasingly during the past few months, drenched in sweat on waking. Odd, that…

Into the bathroom, down to breakfast and out, as Monday is one of the days I have been accustomed to go to the gym near my office. Friday is the other gym day, while on Wednesdays I have exercised at home. This has been the régime for nearly a year now, barring holidays. At least sweat is not out of place in a workout. Indeed, maybe it was the fact that I had seen people at the gym emerge from a bout of common exercise differing wildly in the degrees to which they finished up either shiny or matt that deflected me from paying closer attention to my own perspiration.

A bit of rowing that left me suitably knackered; 26 press-ups and other bits and pieces; review with my trainer (“see you Friday!”); shower, dress and back to the office just down the road, buying my reviving post-workout banana on the way.

The call on my mobile came shortly after 2pm. The phone, which is new and much loved and is now redeeming itself by taking photos for this blog, showed that the incoming number was “blocked” (an apt word, as you will discover). I picked the phone up quickly from my side table and took the call. The caller was a doctor from my GP surgery, not well known to me, who was brief, suitably reassuring and to the point. My blood test had shown up a haemoglobin count of 9, where one would normally expect 13; in other words my red cells were not as numerous as they should be and I was anaemic. “It’s nothing to worry about” she said and I envisaged a course of iron pills or something similarly innocuous as being all that was needed to rebalance things. She went on to advise that the haematologist at a hospital not far away from my house, but in the next county and where I had never been before, was asking to see me at her clinic in the afternoon of the following day. There was a distinct impression that the specialist was clearing her diary. Three minutes, tops, and the phone was once again dormant on my side table.

I was unsettled and no less so when I told the vicar with whom I work (we will call him “Father Milligan”) that I would be unable to come into work the following day and the reason. “Oh dear” was his immediate response. Coming from anyone else this simple reaction might not have been so concerning, but such is the size and warmth of this man’s heart and the energy and time which he devotes to pastoral care that I was reminded in that instant that he was someone who had been present at many bedsides and stood by people in all kinds of distress.

There was much to do that day as the church where I work was preparing for the launch in the evening of a lecture series on Dante’s The Divine Comedy. Tables had to be moved and laid out with food and drink; a laptop and projector needed setting up; there were musicians and book publisher’s staff to welcome and put at ease; people to greet, money to collect and an evening of music and meatballs, poetry and wine to be had. All went well, but I felt more than usually drained as I trudged from the church to the Tube station. Where was my usual sense of adrenaline?

In my rucksack was a wonderful book, a copy of Dante’s great work. Father Milligan had slipped it discreetly under my arm earlier, having written in it a simple dedication “in memory of this evening” and said with a gentle smile that I would need to have something to read at the hospital. I wish I could say that I was able to concentrate on the translator’s introduction as the District Line train slushed steadily to its final destination in the torrential rain that fell on London that day. Some of the words went in, but a large part was lost to the extreme fatigue that now gripped me and the sense that the course of my life had somehow already changed.

The greatest poem ever written

Interlude

You could be forgiven for thinking that I have given up. Let me assure you, readers, that I have not been idle.

One of the paradoxes of the present state of things is that I can be simultaneously exhausted and awake. The result is that the wee small proverbials are much occupied with thought of what I am to write next and that my phone, with its screen dimmed and its normal clicks silenced, is as active as I, an extension of hand and mind. Come the daylight: routines other than writing tend to take over and personal deficits (that I will explain) lose me time. Not long now, I promise, and we will go further in our story.

Now that I know that there is more than one person reading this—and do please tell your friends to drop by—I have decided to address you as “readers”, pure and simple. Do please let me assure you however that you remain dear to me and that I value your companionship in this space, whether I know you also in the real world or only in the sense we now call, with increasing ease and naturalness, by the name “virtual”.

Back asap then, but in the meantime stay safe and do take a moment to look at this picture. The man shown has a cameo appearance coming up.

A Frenchman, when smoking was still cool

Ignorance: is it bliss?

The Saturday that followed was spent in the surprisingly satisfying task of cutting up what we now refer to as “green waste” into the robust biodegradable bags that our local authority makes available for fortnightly collection. Why, though, had I loitered listlessly in the cool of the house in the morning, leaving the strains of mowing the lawn to my wife? Why was I so breathless as I lifted cases of drums and percussion instruments downstairs in readiness for a workshop the following morning?


Sunday offered more lively distractions. The workshop—the first my colleague and I had conducted for a few years—was a great success. Warm, welcoming clients; agreeable rural surroundings; conversations and jokes on the road to and from; creativity and great rhythm from all involved. Feedback, followed up in writing, spoke of “beautiful work” and a session that was “beautifully judged, expertly facilitated and full of heart”. Please do not think I boast, dear Reader. The success of drumming depends on sensing divisions in time and marking them, typically playing against and around them in a creative way. It is a process as natural as breathing and as instinctive as play. Practice improves skill, but does not change the nature of the process or confer virtue. We enjoy what we do as musicians and are thankful for opportunities to share our joy.


I mention all this, not only so that you may begin to glimpse the principles that from time to time I remember and that bring me peace and consolation amid the hurly-burly of daily experience, but also to point a contrast with the embarrassment I felt when making simple errors of coordination and dropping instruments hitherto easy to hold and play. It was disturbing, but the demands of the moment drove me on.


Sunday was also our wedding anniversary and I was able to get back to the relaxed intimacy of an Indian buffet lunch with family: my beloved wife of 23 years, my rock, my constant, the owner of my heart; our son, the keen medical student; his girlfriend, student of theology and psychology, of whom we are very fond; our gentle daughter, about to enter her A-Level year.


The food was good, I was on a high and our celebration was of the best that life can bring. We love each other.


This was not a day of ignorance; it was a time of mercy and, yes, it was bliss.

Where we had the workshop

And so it continued...

Well, dear Reader, I rather suspected that sleep would for the most part elude me during the last few hours. Grrrrrr


It is one of the paradoxes of my present condition that a niggling cough can prove more trying than the more painful thoughts crowding in the shadowy wings of my psyche and occasionally making a dramatic entrance on stage. The advice I have had is that it is best to let this latter crew have their little scene, so that they will then more quickly leave the stage and make way for more agreeable players. Last night it was mainly the turn of the cough to keep me awake, with only relatively mild appearances by the lurking thesps to break the monotony.


So, to bring you up to date after the first entry: I returned to the surgery on 3 September, gave my blood and asked casually as I got ready to leave how soon it would take for me to receive the result. The answer was that there were far too many samples flying around the system for each patient to receive an individual report and that I would only be contacted if the test showed up something "unusual". Thinking no more of it, I hopped back on my bike after a finger-grubbying battle with a recalcitrant bent mudguard and set off home, later drawing out the shining arc of the day with a working lunch of paella and fruity house red with someone whose company I warmly enjoy. All the while the ruby liquid I had passed over to the dispassionate embrace of the NHS earlier in the day was on a path of its own...


Now I am going to stop for breakfast because regular nutrition is doubly, if not triply or even higher multiples more important to me than it felt only a few days ago. In the meantime here is a picture of our beloved cat (terrific mouser btw). More soon, I trust.

And so it began...

Dear Reader,


Just over a week ago I had no idea that I would in a few days be receiving life-changing information of the unpleasant type and writing a blog about it.


Returning from a week away this past July I opened a letter from my GP surgery requesting that I make an appointment with the practice pharmacist to renew my existing prescriptions for various chronic and tedious, but essentially unscary, conditions. Meeting him eventually on 25 August seemed straightforward: blood pressure normal, no repeat scrips needed just yet and so the meeting went on in its amiable way.


Near the end he suggested that I have a routine blood test as it had been four years since the last one and, after all, you can't take prostate health for granted, especially in your mid-50s. Leaving you now to conclude accurately that I am a male of the species of a certain age, I will retire to my bed in order to try and catch the sleep that has been eluding me as the week has unfolded and I have begun to learn the sobering truth about my present state of health.


Good night and there will be more from me soon, Deo volente...

Dr Jan Gosta Waldenström (1906-1996)