The new mattress was truly wonderful, you will be delighted to know, but sleep played hard to get. Wednesday 13 July 2011 was to be an important day and my mind was in no hurry to shut down. So, that thing happened when you lie awake for what seems like an age and eventually sleep turns up, but too late, so that when the time comes for you to get up—which in this particular day had to be early—you are not as wide awake as you would ideally like to be. Sigh…
My wife and I were due at UCLH by 8.30am, which meant leaving the house by 7.30. We didn’t quite manage it and so were punished by having to take a later, faster train than we would have liked and having to stand all the way to Waterloo. Give me a slow train and a seat any day, but we couldn’t keep the good people at the hospital waiting. We emerged from Warren Street Station into the bustle of Tottenham Court Road and there was just enough time in the distance between the station and our final destination to send a text about—you guessed it—photocopier leasing contracts. Once the message had zoomed off to its remote satellite destination (that is how these things work, isn’t it?) I switched the phone to “airplane mode”: for the rest of the day it was going to be an iPod.
There is something about the first floor of The Rosenheim Building of UCLH that should be bottled and fed into the water supply of, not just all National Health Service premises, but the mains of the country itself. The manner of all the people working there that I have met is of quiet efficiency, reassurance, focus, professionalism, warmth, humour and other good stuff. If they ask you how you are, it is not because they want to soften you up to sell you something—when I have finished putting the boot into photocopier leasing contracts, I will get to work on telemarketing techniques, which are surely the invention of Lucifer himself. I digress…
The first floor is divided into different areas for different procedures and on this day were headed for Apheresis (the Ancient Greek word for “removal”, hence “harvest”). In this section there are four beds and, by the side of each, an apheresis machine. The section is managed by two nurses at any one time and the pair who would be looking after me introduced themselves with broad smiles. Here’s the machine I would be on, named after Ginger Spice (there’s also one called Kylie; Ant and Dec also get a mention).
|Geri Halliwell as you have never seen her before.|
She is rumoured to be not entirely thrilled with her latest makeover.
A number of things had to be done before the procedure could start: my blood had to be tested and, if my counts were satisfactory, the machine had to be set up; my blood pressure, pulse, blood oxygen level and temperature (“vital signs”) had to be measured, as did my weight and height; a needle had to be inserted into my left (non-dominant) arm and a narrower, plastic cannula into my right. Once tubes were attached to the needle and cannula I would be confined to the bed for approximately five hours. Fortunately the bed was extremely comfortable and had the added benefit of being fully adjustable. I would be able to move my arms, but movement of the left arm was discouraged as bending it would risk injury, such was the rigidity and width of the needle.
My blood counts came back normal, with haemoglobin slightly raised from the previous day, and so we had the green light. Tubes were rigged up; drip bags were attached to the rail above the machine; settings were keyed in. I got out my phone, headphones and Kindle. My wife settled herself in a chair by the bed, grappling with sudoku.
|A poor photo of the bags suspended above the machine.|
Left to right: anticoagulant, saline, waste bag, stem cell bag. Obscured by the control panel and the nurse's hand is a bag in which additional plasma can be collected, if required (it wasn't).
The needle went into my left arm under local anaesthetic: a stout item designed to carry a generous quantity of blood to the machine. The cannula was put, rather painfully—don’t like cannulas, for the most part—into my other arm ready to be the point at which blood, having circulated through the machine, would be returned to my system. Now for a “comfort break” and a last chance to stretch my legs before the day’s proceedings began in earnest.
Once I was back in the bed, it was time to connect the various tubes to the plastic whatsits (technical term) attached to the needles and set the machine going about its laborious task of separating out at least two million stem cells per kilogram of my body weight from my circulating blood. Here the team hit snag one of the day: when the tubes were connected to my left arm, the strong pulse of blood into one of them indicated that the needle had gone into an artery rather than a vein, an undesirable state of affairs. Time to regroup, meaning that the needle would have to be withdrawn, the bleeding staunched with a tourniquet, and another location found. I was told that it was unusual to encounter an artery so close to the surface.
So, more anaesthetic and another needle, again painless, but we soon hit snag two: the amount of blood that had leaked into my arm and the body’s defensive reactions to such an assault (unintentional, Your Honour) had caused the tissues of my inner elbow to swell, meaning that the vein into which the new needle was introduced was constricted and would not yield blood. I had fun squeezing and releasing a little pad jokily shaped like a red blood cell in order to try and induce the vein to produce the goods, but the vessel, like the previous night’s sleep, proved stubborn. We had now therefore reached Plan C: the needle would be removed from my left arm and a flexible cannula inserted into a vein along my forearm. This was possible because my veins are as yet in good nick and would give an adequate flow to the machine, even through a cannula. I would be free to bend my arm, so there would be at least some reward for all this vascular toing and froing.
The cannula went in without any fuss—either on its or my part—and, once the tubes were connected to it, we were ready to start circulating my blood through the machine. This did not feel as weird, either in concept or in execution, as I had envisaged. It was quite relaxing to watch the steady pulse at the interface of the three tubes coming from my left arm as the scarlet from my vein mingled with clear anticoagulant before making its way around the back of the bed to the machine gently whirring and clunking to my right.
I was drowsy for much of the first half of the procedure, catching up with some of the sleep that had been so elusive during the night. There were interruptions when one of the nurses would come and check on progress or see to it that blood was flowing evenly to the machine. I now learned that veins do not like being violated by sharp objects and that they can go into spasm, trying to eject the intruder; this in turn interferes with blood flow. In order to relax the wounded vein and make it more amenable, a pleasantly warm pad was placed in the crook of my elbow and, with a view to aiding the process, I was given another quirky soft anatomical shape to squeeze periodically, this time a touchingly small bone bearing the name and strapline of Anthony Nolan.
|The little bone promoting Anthony Nolan,|
the wonderful charity that links bone marrow donors with needy recipients internationally.
The strapline is BE A MATCH, SAVE A LIFE.
My vein’s twitching, futile attempts to protect itself from assault were curiously poignant: how staunchly our systems fight to maintain the status quo of life. In this case however the immediate interests of one vessel had to be sacrificed for the good of the whole: quite political, really. The vein put up a fight and there were frequent bleeps from Ginger indicating to the nurses that there was an interruption of flow and calling them over to restore order—yikes, more political analogies! Problems persisted until they decided to check the line for clots. The tube carrying blood to the machine was disconnected and some of its crimson contents poured on to a thick gauze pad. There it was: in the middle of the spilled red stuff, the tiny dissident clump of cells, about a centimetre in diameter, that was standing in the way of the harvest— a small but effective protest, one might say. The line was duly reconnected and the Ship of State was back on course, if I may be allowed one final metaphor.
Events proceeded smoothly from then on while I listened on my iPod to an effective critique of some of the standard arguments about the existence of God, in this instance The Good God Hypothesis and The Evil God Hypothesis. Academic points sallied forth as the audience on the Oxford course tackled the lecturing philosopher with a variety of questions. He repulsed most of them without too much trouble, but one seemed to break through the lines: in essence the question was “instead of debating God and His existence in theory, why not seek to experience Him as revealed in the Scriptures?” While this question is fraught with all sorts of difficulties—philosophical, historical, cultural, to name but 5,000 (and counting)—it is nevertheless striking that spiritual experience is so readily discounted by many modern commentators. We properly esteem our senses and intellect, evolved over unimaginable lengths of time, as guides—albeit imperfect—to the realities of things, but banish our spiritual senses, belittling them as an irrelevant by-product of consciousness or a tiresomely obstructive survivor of outmoded ways of culture and thought, the junk DNA of the mind. The concept of redundant DNA is now itself open to question and I would suggest that we are not, and may never be, in a place where we can do without overtly spiritual frameworks. The human mind is capable of as many follies as it is glories, but I do warm to the idea that what we are witnessing is a struggle for dominance between the visionary, “Big Picture” aspects of the mind and the analytical, structuring tendencies.
Never mind all this stuff: what about food? About half way through the whole proceedings the lady appeared with the refreshment trolley, from which I requested a corned beef sandwich (plain but decent) and a banana. Late morning there had been shortbread biscuits and NHS tea (weak). My wife and I also shared a packet of Doritos. I could get used to this.
I had been warned when briefed on apharesis a couple of weeks before and again as the harvest started to watch out for the tingling feeling in my lips that would be the first warning that levels of calcium were getting significantly depleted. Lack of calcium in the blood was a side-effect of the anticoagulant that was being introduced into my blood to stop it clotting in the tubes or the machine and bringing the whole process, not to mention me, to a grinding halt. Symptoms of low calcium could appear at any stage in the harvest but on this occasion they showed up late on, being remedied by chewing a few fizzy tablets with an orangey taste that made the tingling abate in about 10 minutes and left me feeling rather bloated and flatulent: better, of course, than the muscle cramps or worse that could have followed otherwise.
The bag suspended nearest to my head was periodically receiving the crucial stem cells, mixed with a concentration of white cells and a small quantity of red cells that gave the otherwise clear liquid a pinkish tinge. It took somewhat less than the projected five hours to collect the volume of liquid in this bag that the nurses were after. It was then time for the machine to be stopped and the bag taken to the laboratory on another floor for testing to see whether enough stem cells had been collected in this one session or whether I would be back the following day for tea and biscuits. The bag had been carefully labelled earlier, my name and date of birth being verified with me by two nurses present at the same time, one of whom checked what the other entered into the label printer; before it was stuck to the bag, the finished label was shown to me. This was all very reassuring, not least since the man in the next bed had the same first name as me.
It took not very long at all for the happy news to come back that 2.3m cells per kilo of my weight had been collected and that my next encounter with NHS catering could be delayed until transplant time. Some people have a much more protracted harvest and sometimes an alarmingly expensive injection is needed to coax (bribe, more like) the stem cells to emerge from the bone marrow in sufficient numbers; complicating factors can be age (I am relatively young for this sneaky disease) and number and/or type of previous treatments. Although my left arm was steadily going interesting shades of purple, there was no doubt that I had, at least on this occasion, had an easy go of it. The harvested cells would be making their way under careful protocols to the frozen vaults of the hospital.
Before the cannulas were taken out and hairs wrenched from my arm by the removal of the sticky pads that held the aforesaid whatsits in place, there was need for another blood test. Two vials of blood were drawn off through the cannulas and my wife took them upstairs for testing. The result soon came back normal, the cannulas were finally removed and we were free to go.
We reached home in reasonable comfort, this time travelling out of the rush hour. In the evening my son and his wife came round for their first sight of their official wedding photographs, although “official” sounds excessively stiff for such a delightful collection of joyful images. This being the digital age, with initial production costs reduced to low levels previously unimaginable, photographers are freer to take risks with shots, leading to a riot of creativity in areas of their art that had previously been rather hidebound, not least wedding pictures. The classic skills of photography are no less required than they ever were, of course, but what fun can be had and no more messy chemicals (unless you really want to).
The day had gone as well as possible, there was the new mattress to look forward to and I was now tired enough for sleep to be assured. I can for a little while longer hold off on facing the details of the next, more unpleasant, stage of treatment. I am due to see the consultant this coming Tuesday and will let you know how that meeting goes.
|My left arm, the morning after.|
I hesitated to show you this, but this blog is about sharing the everyday experience of a disease and its treatment.
Knowledge is power and, if you like photos, you will maybe appreciate the strong diagonal.