Sunday, 22 May 2011

Spanish and French

On Thursday 28 October 2010, confident that the self-administered injections of prescribed wonderstuff would by now have bolstered my immune system, I ventured out for lunch in Richmond. My companion was the same person with whom I had eaten on 3 September, the day of the routine blood test that had led to diagnosis and the shifting of ground beneath my unsuspecting feet. On that earlier occasion we had sat outside in blazing sunshine but now the weather, though dry and pleasant, had an autumnal chill and we sat inside, eating a “surf ’n’ turf” combination of fish cakes and pork loin, washed down in my case with considerably less red wine than I would have enjoyed a few weeks previously. I had hair then too.

If the food combo sounds odd, it may help if I tell you that the restaurant was a tapas bar, where such counter-intuitive gustatory marriages are easier to find and, I dare say, to digest. The authentic decor—acres of ceramic tiles in rich browns and reds—helped put the imagination in Iberian mode ready for the food.

As my companion is one of my employers, much of our conversation centred around professional topics, including how my illness and treatment would affect my work over the coming weeks and months. It ranged far and wide over other matters as well, including the state of the economy and the strange habits of lawyers (I used to be one and my friend used to work on the financial side of a large firm of solicitors).

Before eating, having a few moments to fill, I had checked out a possible new dental practice to register with, mindful that good oral health was even more important now that my immune system was doing an impression of a roller coaster. It was all a bit bright and shiny for me though, with an emphasis on creating the perfect smile that led me to think that it would be more interested in selling me expensive falsies than in the basics of tooth care. A far cry from the traditional practice in the front room of a private house that has been the norm for me over the years and so I shelved the issue of finding a new dentist for now.

After lunch I managed to buy some new pyjamas in M & S, this after months of searching for the right combination of styles and size.

Fortified by food, relaxed by wine and conversation and pleased with my new jim-jams, but not yet weakened by chemo, I walked home to Twickenham to find that a friend had brought over a home-made tarte Tatin for the family to enjoy. And so we did, with vanilla ice cream bien entendu.

The tarte Tatin.
Created in the 1890s at L'Hôtel Tatin in Lamotte-Beuvron in the Loir et Cher département of north central France, when it was run by two sisters called, er, Tatin.
Whether originating from design or, as the various stories have it, accident, the dish is an enduring favourite.
You can read the hotel's own account (French alert) on its website.

Talking of chemo, one of the online discussion boards that I subscribe to was dominated by talk of bendamustine, an “alkylating agent” developed in East Germany around fifty years ago and increasingly adopted in the West over recent years. It seems to hold great promise as a chemo drug with fewer side effects and less toxicity than some current treatments, but it needs more evaluation before being approved for treatment of WM in the UK. The Americans are already using it as a treatment of choice, so I hope we get our act together soon. This view is of course offered with the usual caveats (i.e. I am not medically or scientifically qualified).

The Berlin Wall, whose breach allowed more than just Trabants to reach the West.

It was as well that I enjoyed my food on this particular day, as round 2 of chemo was due the next…

Monday, 9 May 2011

Needling myself

Wednesday 27 October 2010 was the day I acquired a modest, but important, skill: that of plunging a short, sharp needle into my abdomen and then injecting the contents of the syringe attached.

A syringe of 1860.
Apart from the difficulties of keeping such an implement clean, just look how broad and blunt the needle is.
You might want to mention this when someone in your hearing next bangs on about "the good old days".
17th-century dentistry, anyone?

The deliberate infliction of pain and discomfort on myself is something I have consistently made strenuous efforts to avoid, my 25 years plugging away in the legal profession notwithstanding, and so you may guess the degree of keenness with which I approached my new assignment.

I had toyed with the idea that I could find someone to perform this simple but unpleasant task for me, a mixture of practicality and self-respect nudged me towards DIY. 

Better get on with it, then...

The hospital had given me a box of pre-filled syringes and some alcohol wipes with which to cleanse my skin of bugs (whether this was all nasties, or just the 99.9% so sought after by disinfectant producers, I was not sure). The syringes were to be kept in the fridge until needed, another reminder that the clear liquid they contained was a sort of living thing and not an ordinary drug. It all felt quite cutting-edge to one used over the years to your average chalky white tablets and greasy ointments.

I decided that the kitchen, the room in the house with the most natural light, would be the best place to carry out the procedure and so I positioned one of the chairs just so. Next I washed my hands thoroughly and took a single syringe from the box in the fridge and, after placing it on the kitchen table, sat down and rolled up my shirt. I took a wipe from its sachet, unfolded its modest white expanse and-never one to take chances, least of all now-wiped its moist coolness over a far wider expanse of my abdomen than was probably necessary.

Taking the short clear plastic syringe in my right hand, I removed the cap covering the short, stout needle. Having contemplated its modest length and undoubted sharpness for a brief moment I finally put aside all reserve, placed the needle perpendicular to my nervous flesh and drove it up to the hilt through my slightly resistant skin. 

I was pleasantly surprised that the resulting sensation was more modest than when another person was wielding the needle. So far so good.

Now for the object of the exercise. I pressed the plunger of the syringe home. The spring inside the implement ensured, by providing resistance, that this movement was carried out with consistent pressure and at a uniform speed throughout the two inches or so of the plunger's journey.

Relieved when this was done, I kept the plunger depressed as I withdrew the needle. When I released the spring-loaded plunger ingenious catches ensured that the needle receded within the body of the syringe and was fixed in place so that it could not be used a second time or cause accidental injury.

Reminiscent of the noble honeybee that stings once but then must die, the used syringe was consigned to the sharps box with a reassuring clatter. It would joined by four more over the following days.

The sort of syringe I was dealing with: beautifully engineered and, I am told, rather expensive.

Monday, 2 May 2011

The Right Trousers

On Tuesday 26 October 2010 it was to time to see Dr M, the haematologist, again. No visit to such a specialist is complete without a prior blood test and on this occasion my samples bore good news and bad news. There was a modest rise in my haemoglobin to 9.9 which was a good sign. Not so hot was a very low neutrophil count of 0.31. My other white cell counts weren’t looking too clever either, so it was time for a tactic new to me, but which the wise Dr M had no doubt foreseen all along. I would need a course of daily injections of granulocyte-colony stimulating factor (G-CSF), plus weekly blood tests in order to ensure that my counts remained sufficiently robust to be able to continue the current schedule of chemotherapy every 21 days. As the good people at Macmillan put it:

“White cell numbers are usually back to normal by the time the next dose of chemotherapy is due. But, sometimes, if the levels of white cells are still low, the chemotherapy has to be postponed, or the dose lowered.”

As my mercifully brief September stay in hospital dealing with a stubborn chest infection had highlighted, my immune system was at the time of diagnosis significantly hampered by heavy infiltration of my bone marrow by malignant B-cells. These useless malformed entities just clog everything up and so cause harm by sheer force of numbers (I am sure there is an improving moral here about the evils of neglecting regular spring cleaning). As the system was therefore being suppressed both by my disease and now from the battering of chemo, it was time to call in reinforcements in the form of a manufactured version of a naturally occurring bodily protein that would stimulate production of neutrophils.

I assumed initially that I would have to present myself at hospital each day for an injection but Dr M assured me this was not the case: either I could find someone at or near home to administer the injections for me (my medical son sprang to mind) or I could inject myself (eeek!). It was no necessary to make the decision right away as I would have the first injection there and then and could see what was involved. Time therefore to go to the Day Unit for my initial jab, where Nurse S, my excellent take-no-prisoners key worker, offered me a choice of injection sites: arm, thigh or stomach. The latter appealed to me least, but she assured me that it was often the best one to go for because of the volume of fat (modest in my case, naturally—ahem!) available to pinch together and pierce relatively painlessly. Sceptically, I agreed. She showed me the technique to use, assured me how easy it was and proceeded to sting me like a bee. Rebuking me for flinching like a wuss, she sent me on my way with a supply of pre-filled syringes and a “sharps box” to put said implements in once used. What fun the next few days were going to be…

The sharps box, made of robust plastic.
Once the lid is pushed fully shut, the box can not be reopened. When the box is full, you return it to the hospital for incineration.
Also visible is my water filter and a bottle of laxative syrup (you will learn more of this deceptively sweet stuff in due course)

In filthy weather my wife and I left the hospital and drove to Portsmouth to see my mother for the first time since my diagnosis. I had been a bit apprehensive about seeing Mum this time, but in fact we were both relaxed in the face of my strange disease, me now bald again like the baby I once was.

We ambled over to Gunwharf Quays, a significant “retail destination” situated between the ferry ports for the Isle of Wight and cross-Channel destinations, and treated ourselves to lunch at Pizza Express. While enjoying my meal I kept looking over at my reflection in the large mirror on a far wall, not quite believing that the shiny hairless pate clearly visible centre-screen was truly mine.

The Spinnaker Tower that dominates the skyline above Portsmouth Harbour.
170 metres high, it offers views of up to 23 miles on a clear day.
A different sort of needle.

Gunwharf Quays contains a large number of “outlet stores” for major brands, selling seconds or discontinued lines at come-get-me prices. Both disease and exercise had shrunk my waist size from 34” to 32” and I was looking a bit lost in my trousers. Thank heavens then for M & S and its reasonably priced lines. I bought three pairs of trousers in my new size: charcoal grey jeans and two pairs of chinos in contrasting shades of greenish.

Back to Mum’s for tea, but not before we had seen this:

No comment necessary or, indeed, advisable.