In Limbo

I never meant to leave writing behind, honest. At the same time, it seemed that, by the time of the last entry here, some sort of milestone had been passed: the shock diagnosis of September 2010 had led directly to the absorbing project of two significant tussles with chemotherapy, with all their associated procedures, subsidiary medications and appointments, finishing off with some minor surgery, the final flourish of a third bone marrow biopsy and the welcome assessment from my consultant that I am currently in a good and deep remission. It felt like time to take a rest from self-examination, return to the consoling (ha!) rhythms of work and just let normal life drift its way back in like the returning tide seeping across a sandy summer beach.

That tide has indeed come back in, bringing with it some interesting bits of driftwood along with some less attractive flotsam. Yet I have not lost the urge to write, record, reflect and, occasionally, to inform. In the years before encountering the good Dr Waldenström and his eponymous lymphoma I had occasionally put pen to paper to make some sort of record of the passing moments and their associated thoughts and emotions, but never for public consumption and certainly not with any great sense of purpose. Being unwell with a rare disease changed that, as it did a lot of things, and I now face the fact that some sort of minor muse has taken up residence in a corner of my psyche, occasionally emerging from her cramped quarters to nag me into action.

So, what has been going on medically of late? Until recently, I had been grumbling along with one of those tedious upper respiratory tract viruses that lumber one with a ragbag of minor symptoms, whose accumulated weight slows the body down, interferes with simple tasks and announces to people around by means of hacking coughs and frequent sniffles that giving you a wide berth would be in their best interests.  A visit to the GP established that I had a small secondary infection in my upper right chest, so a week of the standard entry-level antibiotic, amoxicillin, was prescribed. A tickly cough proved obstinate for quite a while, but the little capsules finally seem to have done their work.

Rhatany and Cocaine Pastilles
Believed, er, no longer available. What reputable drug companies used to be able to get away with, eh?
Rhatany is a name given to krameria root, whose astringent biological action is ascribed to rhataniatannic acid, which sounds like a drum rudiment.

One of the things I am far from sure of is the state of my immune system post-lymphoma and post-chemo. From what I can gather, what may have really taken a clobbering while the lymphoma was assembling its forces and in the subsequent battle against it with the help of powerful poisons—rather like relying on mercenaries supplied by Stalin—would have been my acquired immune system, the bank of antibodies acquired in response to specific pathogens as I engaged with the world outside the womb over more than five decades. For some months now I have been battling a little colony of minor warts on one of the fingers of my right hand. Many people have to deal with such things at some time in their life, but I cannot help wondering whether they would have surfaced in the old days before diagnosis.

The possibility of infection is a constant theme for WM patients and some people have had a much worse time with compromised immune systems than others. I have certainly had my low points, needing strong antibiotic intervention, both in the weeks that followed soon after diagnosis in 2010 and while having my stem cell autograft in 2011. What I have found since is that I have not caught everything going, but there is always the apprehension that some virus that previously one might have shrugged off will grab hold and take permanent lodging like some raucous gatecrasher at an elegant social occasion, opening the windows to allow his friends to storm in, swipe the drinks and puke on the carpet. 

Infection is one thing (it's of course far from that, being a countless horde of things) but a bad back is quite another. Over the last few years I have experienced increasing lower back pain, which more recently, in fact preceding the WM diagnosis, has hardened into a nodus of sometimes marked discomfort on the right side, accompanied by hot and cold nervy numbness down my leg and into my foot. Walking can be significantly hampered by stiffness and pain, particularly by the end of the day, although it is even ground, such as pavement, that presents the most difficulty. In summer 2011, and even since, uneven ground has made for more comfortable walking: 5-mile Cornish cliff walks have been as pleasant as ever. Also, cycling does not tax my back but let me not bore you at this point with what it does to my knees.

Who needs the dubious ministrations of rhatany and cocaine pastilles when you have Cornish cliffs to help you breathe (and walk) more easily?
This is Trevone Bay in North Cornwall, a favourite holiday destination for me and my family since 1993.

In all conditions to which we attach the label "medical" it seems that we reach a tipping point at which the interference of symptoms with that assemblage of events, habits, duties, emotions and the like on which we place the tag "normal life" is such that we find ourselves saying words to the effect of "something must be done". In the case of my back I found myself rocking on this fulcrum of misery some time ago, but by then back pain was getting mixed up with the general slowing down and lack of energy and ease of mobility contrived by lymphoma; indeed I wondered if the back problems were a symptom of WM.

Now that I am well in the haematological sense I must address the back and its linked problems.  First stop, earlier this year, was referral to the local physiotherapy services, who, after detailed examination and history-taking, prescribed some floor exercises and stretches that I have been following as religiously as I ever can anything. These are providing some relief, even relaxing me sufficiently at various points for the cat to feel comfortable sitting on my stomach while I go through the routines: all very well for her but not very helpful for me, so she is swiftly evicted.

However by a few months ago it was clear that exercises alone would not deal with the fundamental issue. Time to go back to the GP, who referred me for an MRI scan, which would be carried out by a company contracted to the NHS to provide scanning services. The scanner in this instance would be housed in a trailer that does the rounds of various locations and in due course I was given a date when the expensive device would be in my area: the venue turned out to be the generously sized car park of a GP surgery in Teddington, a couple of miles or so down the road from my house.

There was a small waiting area in the trailer and a locker in which to leave any metal objects that would interfere with the scanner's magnets: keys, watch, loose change... I also had to sign a declaration that my body did not harbour any metalwork, such as orthopaedic pins, plates and screws. There were two staff in the trailer: one to clerk me in and deal with admin and the other, significantly older, to operate the scanner and process the images, which were displayed on a screen that he was watching intently for most of the time.

An MRI scanner – The Tube Ride With A Difference
Somehow you can tell this photo was produced for the private healthcare sector, can't you?
People smile in the NHS too (quite a lot, actually).

After about 15 minutes it was time for me to enter the scanner room, escorted by the older man. I lay down on the couch that was then raised to the height of the scanner's central tunnel, ready to be slid into place. Headphones were provided, through which the sounds of an MOR radio station warbled thinly. I was also given a rubber bulb to hold throughout and squeeze if I panicked and wanted the whole proceedings to end. After telling me that the noise of the scanner would eclipse the meagre sounds of the pop music and advising me to keep my eyes closed throughout the scan, which would last about 20 minutes, the technician manoeuvred the couch into the tunnel and resumed his place at the monitor screen, closing the door behind him.

I was completely unprepared for the noise of the scanning process (or, rather, processes, since there were several in succession). The noise like a road drill stopped, allowing Mark Knopfler to surface briefly in the headphones, only to be drowned out by a numbing techno hammer beat the experience of which could be likened to being locked in a particularly minimalist disco. There was periodic notice from the technician through the headphones of the duration of each scan and it was all over soon enough, but not before the reason why the technician had counselled against opening my eyes was borne in on me. Some way into the proceedings my nose started to itch and I lifted my hand gingerly to scratch it, finding in the process, as my hand made extremely rapid contact with the roof of the tunnel, that the scanner was much more confining than I had thought. Although my own neuroses tend to constellate around bridges or any other high structure with low railings, in order to avoid allowing my synapses to admit claustrophobia to the population of hang-ups I kept my eyelids firmly together.

The Millau Viaduct in southern France, the tallest bridge in the world.
I don't care if it was designed by Norman Foster, I'm not going on it.

Released from the device after the final sonic assault, I collected my belongings and left the trailer with what I hoped was a reassuring smile for the next patient in line, who was sitting in the waiting chair I had occupied a while earlier.

In about two weeks a letter arrived from my GP inviting me to make an appointment to discuss what the scan had revealed. I had long suspected what the problem might be: another condition with a long Greek name that I had first heard of 38 years ago, when I was 19 and had a back X-ray after a road traffic accident. A motorcyclist, careering on to the pavement after colliding with a car whose driver was foolishly overtaking him at the bottom of Richmond Hill, had jammed my back against some railings by which I was sitting with some friends at the end of an afternoon of pleasant activities in the park. The name is "spondylolisthesis", which, off the top of my head, means something along the lines of  "displacement of vertebrae". At the time I was advised it was no big deal.

Spondylolisthesis
Not very nice.

Sitting with my GP as he went through the MRI report, describing a kink in my spine formed by lumbar 5 riding out over sacral 1 and causing the disc between them to make contact with, and irritate, my sciatic nerve, I wondered whether the deformity might be traumatic in origin rather than, as is more usually the case, congenital. Maybe I will find out but, whatever the cause and however innocuous the condition at first appeared all those years ago, it has now evolved into something that has a marked impact on my comfort (pretty much constantly) and mobility (sometimes). As medical people say, it has become a "quality-of-life issue".

My GP sometimes seems to share that uneasy view of surgeons that physicians can harbour, leading one to think that the two halves of the medical profession see themselves as separate species. On this occasion however he was in no hurry to spare me the ministrations of a spinal orthopaedic surgeon, although he did say that the surgeon might recommend an injection rather than manoeuvring the offending bits of my spine back into place and securing them with the sort of metalwork that would bar me from ever again having an MRI scan (how ironic that would be). I think he was just trying to spare me anxiety, since, if what I visualise going on in my lower spine is anything to go by, it seems likely that ironmongery will be called for. It's a bit of a strange time to be me: seeing two different surgeons in one year after a lifetime avoiding the knife. Mind you, it seemed at one point as if the two consultations would not top and tail 2012, as the chosen consultant is much in demand and until a few days ago I thought the Yuletide turkey would be facing the knife before me.

It has been taken several months since the scan was first arranged to get this far, but the period in limbo should end during the first week of December, when I go the National Hospital for Neurology and Neurosurgery, Queen Square. I will keep you posted.

Limbo dancing
Naaaaah! Think I'll sit this one out.