An impossible dream?

Today has been clear, sunny and cool, the torrential rains of yesterday having washed away all stuffiness, and the details of the buildings in the City of London have been shown up in sharp relief—even the dull ones have been able to make some sort of bold declaration.

Inevitably after the info fest of yesterday my mind has been full of thoughts of the side effects and miseries of my forthcoming treatment, although at times I have also been able to call to mind the positive atmosphere in the treatment rooms that I will become much more familiar with soon. Time to meet the demon head on and so at breakfast time and continuing on the train to work I began to read in detail the wealth of printed material provided by the hospital. It does not pull its punches: by the end of the week of chemo due in August mouth soreness and ulcers are to be expected as are infections. The professionals do not think of the forthcoming treatment as a stem cell transplant, so much as “high-dose chemotherapy with stem-cell support”. Healthy stem cells are kept in reserve to build the immune system back up after the drugs have laid waste to my bone marrow. Without the reinfusion of the cells harvested before chemo my immune system would be uselessly minimal for months  and an infection that would otherwise be shrugged off quite lightly could prove fatal. We don’t want that, do we?

Inevitably my performance at work is suffering somewhat as mental effort is diverted, consciously and—have no doubt—unconsciously, to matters medical. If only we could acquire more cerebral RAM to ease us through such times of preoccupation.

I brief Father Milligan on what I now know of the disruption that will be caused to my working life by the stem cell harvest over the next couple of weeks or so. He is very understanding. Once again, I apologise. Time to my next prolonged absence from the office seems to be running out faster than before.

On the train home I dream of a day when the words “cancer” or “lymphoma” will not sneak into my head every few minutes and when I will be able to enter a medical facility without someone drawing blood from my veins. The life-sustaining substance that used to so fascinate as it seeped from a childhood cut or graze and steadily clotted on exposure to the air is now an object of mistrust and suspicion. It looks like the same stuff, but it has turned traitor over the years.

I googled "dream" and this is one of the first pictures that came up.

All your broken gold

Welcome then to the new, current Blog 2.0, coming to you on Tuesday 28 June 2011. The weather has been sultry, humid and overcast: conditions conducive to headache and mild nausea.

First on the to-do list today was a trip to the GP to have a small mole on my hip removed. It had irritated me once too often and its game was up. Soothing anti-stress music played in the background as the doctor took less than a minute to inject local anaesthetic and slice off the offending tissue: "gone for ever", as he put it.

It was spotting with rain as I walked home. There was just a brief time to put my feet up before I was due to meet my brother at the station. He was going to accompany me to the meeting at UCH (University College Hospital). Both he and I were on time and we were glad that the air conditioning on the train to Waterloo was working, as the outside air remained stuffy after the brief rain. 

After a change to the Tube we arrived at Warren Street Station, in the shadow of UCH, which looms green and white like an iceberg in the midday sun. 

UCH
In August I hope to be able to enjoy the view from the top floor.

The lung function test, due first, would be delayed as there had been a failure of the equipment. We had arrived with plenty of time to spare and so made our way to the hospital café that looked out on to the traffic and bustle of the Euston Road. On the other side of Tottenham Court Road I could see the hotel where my wife and I would be accommodated, courtesy of the NHS, in August if all went to plan. Piece by piece I was adding different meanings, structures and resonances to a part of London that I had passed through many times, either to visit The British Museum, buy electronic goods or to have a meal. I have vowed, if side effects do not clobber me first, to spend some time in The Brit. Mus. when receiving chemo in August.

In due course it was time to leave the mothership and make our way to the satellite, that is to day The Rosenheim Building, to which you were introduced yesterday. I was about to get to know the first floor of this rather better, having hitherto only been there briefly to have blood drawn.

Having waited for a short while in reception, as a thunderstorm raged outside, I was called by the Clinical Nurse Specialist (CNS), who first of all took me to the more familiar second floor for a meeting with the consultant, who led me through the whys and wherefores of the forthcoming chemo and injections designed to mobilise my stem cells for harvest. Things to look forward would be: (possible) bone pain as my marrow became crowded with the volume of cells brought to birth by the injections of G-CSF; hair loss (again!); low blood counts and concomitant risk of infections; bladder irritation (for which I would be given a prophylactic called Mesna). I signed the consent form for the next stage and shook hands with the consultant, who passed me back to the CNS for a full explanation of the harvest and treatment leading up to it that would begin next Monday.

The reading matter sent out by UCH to brief me on the forthcoming procedures.
Consent to the mobilising chemo is the open form on the left.
Quite a bit to digest...

I will not go into much detail of this briefing as I aim to take you with me (lucky, lucky readers) as I go through the various procedures themselves. The possible complications and how they would be addressed were explained to my satisfaction and along the way I learned that cranberry juice was a useful aid against bladder irritation. The rigours of the high-dose chemo due in August were also touched on, although I would be getting a fuller briefing on them once I had been through the harvest. Nine blood samples were taken from my veins for various tests, including infection screening, and I signed two further consent forms relating to the storage and future use of my stem cells. There was even time for some small talk. I was given plastic bottles in which to deposit my urine over the 24 hours before my Monday appointment: from this rather large sample the efficiency of my kidneys would be assessed.

On the brief tour of the first floor that followed my brother and I remarked on the constant activity of the various divisions in the department. We also learned that the apharesis (harvesting) machines were named after The Spice Girls. I wonder if anyone chooses Scary... 

My weight and height were measured for the purposes of calculating chemo dosage. I was then free to go. 

It having been decided that a lung function test would not in fact be necessary as I was not a smoker, my brother and I made our way back to the main hospital for me to have the echocardiogram. As the machine used was more whizzy and modern than the one used on me at my local hospital last October I did not have to contort myself to look at the screen and the procedure was also considerably quicker than before. My heart was pronounced fit and well.

My brother and I went back to the ground floor for coffee and a bit of a debrief before beginning the journey home. The train back to Twickenham was airless and hot, the air conditioning having failed. My brother gave me some more encouraging words and we hugged before I left him on the platform to continue his journey home. 

A dose of Wimbledon tennis when I reached home was just right to counteract the exhaustion I now felt and take my taxed mind and emotions to another place. For supper my daughter cooked us a delicious risotto with roast butternut squash and bacon (the rosemary in this was an especially nice touch).

Today a leaflet came through our letterbox proclaiming "WE WANT TO BUY ALL YOUR BROKEN GOLD". Quite possible it advertised a dodgy enterprise. However, as I walked home from the GP surgery this morning the poignant notion of scattered pieces of precious metal and damaged opulence came again to mind. My health is compromised; I have a disease that I will never be able to ignore or forget; the treatment now only a relatively short time ahead is at this moment scarier than the disease. Nevertheless there is a dedicated team of compassionate experts seeking to knock this wonky system of mine back into shape and set me on a surer footing for however long is granted to me. As my brother and I sat in the café at the end of today’s meetings I was able to acknowledge that, amid the anxiety I feel about the high-dose chemo and its inevitable side effects, every so often the sun shines in my mind and I am given a glimpse of the healthier life that lies beyond treatment.  I dare to hope as well that another craftsman is at work on the twisted metal of my inward life.

May it be a good night, everyone.

The Centre of Excellence

On Tuesday 2 November 2010 my wife and I took Holy Communion at the church where I work.

This was the first time I had been back to the church since my diagnosis had forced me to absent myself suddenly from regular work there although, as you know, I had been doing some bits and pieces of administration from the remote outpost of home. I felt strong emotions as I entered the ancient building, its quiet mediaeval interior so familiar to me, yet now altered in my perception by what had been taking place over the last few weeks. The alteration was subtle but definite and positive: what I sensed was a deeper sense of belonging than I had known before and a fresh realisation that, not only was this the best place imaginable to work in, but it was also a spiritual home—if we are allowed more than one!

Warm greetings were exchanged with the others who had arrived for the short midday service and I was glad to see everyone. Father Milligan presided with the mixture of solemnity, reverence, sensitivity and informality that his congregations so appreciate. Our prayers joined those of so many other worshippers who over the centuries had been within these walls of stone. The building has itself passed through many trials, escaping—by a matter of some 100 yards—The Great Fire of 1666 and now bearing the scars of catastrophic air raids in 1941 and 1942. As the Rector who saw through the post-war rebuilding once wrote:

“Often we remind ourselves that we are the heirs of nine centuries of Christian worship on this hallowed site. For all those long years…the praises of God and the prayers of His people have been ascending to the Throne of Grace from this place. The very mental and spiritual atmosphere which you breathe as you step…into this Sanctuary has been gradually created by the worshippers of the past…In the quiet and silence of this Sanctuary we can know that 'we are compassed about with a great cloud of witnesses,' and that the past mingles with the present and can inspire us for whatever tasks the future has in store for us."

I often return to these words and their truth is borne in on me every time I go down the steps from my office—with its computers, iPhones and other electronica—and pass through the double doors that lead into the body of the church. This is a place to be still and rest, but also a place of humming energy. We needed this Divine injection as we faced the afternoon ahead: my wife and I were on our way to a key—how “key” would emerge soon enough—appointment at University College Hospital in London (UCH) and attending service was a precious and timely opportunity to prepare ourselves.

We next had one of my favourite treats, lunch at Spianata in Leadenhall Market: the blend of oil-rich focaccia-like bread, delicious fillings and incomparably good coffee is hard to beat. We also wandered around a couple of City churches: St Michael Cornhill, with its Grinling Gibbons carving, and St Margaret Lothbury, with its solemn and imposing dark wood screen.

Grinling Gibbons (1648–1721), painted by Sir Godfrey Kneller.

The greatest woodcarver ever known in England if not the world, the universe, space etc.

Not everything attributed to him is actually by him, as tends to happen with great craftsmen.

He was in fact a Dutchman and living descendants of his are still at work, amazingly.

The interior of St Margaret Lothbury in the City of London, an oasis nestling right behind The Bank of England

Soon enough it was time to take the Tube a little way west to Bloomsbury. Surely this area is the beating heart of English medicine, as well as of other learned pursuits, and UCH is its hospital. There is no doubt that I was about to receive advice and care from some of the best people in the country. On the several occasions since this particular day that I have been tempted to bemoan my lot as as a lymphoma sufferer, I have nevertheless been able to remind myself that I am receiving world-class help. What I did not know as I entered the institutional redbrick Rosenheim Building on Grafton Way was of precisely what that help would consist. Part of me naively thought that I was just there for a chat with the consultant, perhaps tea and biscuits.

The Rosenheim Building of University College Hospital, London.

Not designed by Sir Christopher Wren, but how he (as one trained in the medicine of his time) would have been amazed at what is achieved inside its unpromising walls.

In the end the meeting between me and the WM specialist, for that is what she is, was rather like the time I had seen Dr M at my regular hospital in Surrey expecting to ask her about this wonderful substance called rituximab that I had heard about on the talk lists, only to find that she was already lining things up to treat me with the stuff. This time what was on my mind was the possibility of a stem cell transplant and, lo and behold, this is what this fiercely bright and compassionate doctor proceeded to recommend in my case, a crucial factor in my case being my relative youth and fitness. It was clear that I was being offered a real lifeline here and this was therefore no time for false modesty on either of these counts!

To be specific, what was recommended for me was an autologous stem cell transplant (ASCT) or, as the excellent people at Macmillan call it “high-dose chemotherapy with stem cell support”. You can read about it here. What it in essence would involve would be:

1. Encouraging haematopoietic (“blood-making) stem cells out of my bone marrow into my blood stream by injections of key substances and harvesting a critical mass of them by passing my blood through a clever “abstracting” machine over several hours.
2. Storing the stem cells in a freezer until needed at the next stage, which would be…
3. Administration of a high-dose chemotherapy called, off-puttingly, BEAM, while I would be accommodated at a hotel near the hospital for a few days (cheaper to the NHS than a hospital bed). This would pretty much strip my bone marrow of everything, both diseased and healthy.
4. Re-injection of the stored stem cells, uncompromised by the chemo, so that they could multiply in the newly “cleansed” bone marrow and grow me a new, healthier blood supply from the ground up (in a manner of speaking). After a few days the cells would “engraft” and start doing their life-giving stuff.
5. At least two weeks in my own room in the shiny new hospital on the Euston Road, kept away as much as possible from sources of infection, as I would by that stage be neutropenic, without much that could meaningfully be called an immune system. This would be the most difficult time as there would be chemo side effects, which I will not spell out here, as well as the consequences of having vestigial blood counts. This would be the eggy part, but unpredictably so: “expect the unexpected” is what I have been told.
6. Discharge home to continue recovery, build up strength and return to normal life (anything between three and six months is typically needed).
7. Expect, barring collisions with omnibuses and other London hazards, at least five years without the need for any more nasty medicines.

This would not be a cure, but it stood every chance of bashing this sneaky bastard of a disease severely round the chops for a good while. All the time, the doctor assured me, new treatments were being developed. It was sobering, dramatic information and at the end of this and, at the time of writing, two subsequent appointments I felt physically, emotionally and intellectually drained.

Readers, I have made a decision about the future direction of this blog, which is to bring it, brakes, tyres and metaphors screaming, to the present day. I have notes on every day between 2 November 2010 and the present, but my time to turn them into tolerable text before I dive into the ASCT maelstrom outlined above has run out—it’s my fault, obviously, being a serial procrastinator whose university essays frequently ended in a row of dots. “We shall never know the answer…” was my agnostic cop-out.

My hope is to fill in, eventually, details of the days that have passed since November last, but all I will tell you for now is that R-CHOP chemo ended in February 2011 with a very good result, albeit not without some difficulties along the way and an accumulation of weariness. I thank God for not just the good results of treatment but also for the spiritual fruits: healthy blood counts, a return to work (part-time and for a few months now), freedom to eat soft cheese and generally smell the coffee, no swollen lymph tissues, bone marrow free of accumulated WM detritus, everyone telling me how well I look, the love and support of glorious friends and the best family in the world…

From this point I will tell the continuing story as near contemporaneously as health and energy permit. What has concentrated my mind on doing this is that the next stage of treatment begins tomorrow. I will be going to UCH for a briefing meeting with the transplant team and tests of my physical fitness to proceed with the abstraction of stem cells. I am also expecting to sign a consent form. Abstraction and the build up to it will disrupt July, but so be it.

For now let’s end with a quote I found on a blog written by the partner of another sufferer from a non-Hodgkin lymphoma:

“Cancer is limited: it cannot cripple love, it cannot shatter hope, it cannot erode faith, it cannot eat away peace, it cannot destroy confidence, it cannot kill friendship, it cannot shut out memories, it cannot silence courage, it cannot invade the soul, it cannot reduce eternal life, it cannot quench the spirit, and it cannot lessen the power of the resurrection.”

Online Roller Coaster

Suitable experts tell us that swearing when in pain is therapeutic. That is why I do not feel too bad about shouting intemperately at my computer screen on Monday 1 November 2010.

This was, you see, the opening day for online booking at English National Opera and my wife and I wanted to buy tickets for Wagner’s Parsifal as a birthday treat for me the following March. There was the added piquancy that, by the chosen date, my chemo would be over and I would—all being well—er, be well. It was a goal to aim for: quite a large one actually, as the show would last in excess of five hours.

ENO’s site crawled, doubtless weighed down by the number of people trying to do the same as us. The shouting on our side increased. Twice we clicked on desirable virtual seats on the colourful plan, only to find that our choices—once the spinning beach ball on the screen stopped—had gone to other people. More swearing: it was shamefully undignified, but emotions were running high.

Finally it all fell into place and our credit card emerged from the experience with an extra burden. In fact we had been more successful in our clicking than we thought: when the tickets arrived a few days later in the post, it turned out that we had in fact acquired four tickets. Fortunately the only friends of ours that we were sure cared for Wagner were free on 11 March 2011, so we made a date.

Part of the production of Parsifal we eventually saw.
The staging was strange, but the music sublime.
Seen here is Klingsor, the evil sorcerer, singing from within a giant pelvis (don't ask).

A fair part of the day was taken up with mundane admin, although it did also feature a delicious ratatouille made by my wife and daughter and enhanced by shavings of grana padano cheese.

In the later evening the kitchen was warmed by the oven and filled with the heavy aromatic fruitiness of this year’s Christmas cake. Yes, sir!

Christmas cake, naked and unashamed.

Chemo 2 and other treats

This was some result: after only three injections with fab hormone G-CSF, by Friday 29 October 2010 my depleted neutrophils were up from their all-time low of 0.31 to 4.33. These counts represent (unless I am mistaken) the number of neutrophils per 10 billionths of a litre of blood (we are talking American billionths here; we are also talking MY blood). I cannot (can you?) really visualise such numbers – and the fact that we talk about visualising numbers at all is an interesting insight into the way our minds work – but I was relieved that my immune system had recovered sufficiently for me to have the second round of chemo treatment. You will remember that treatments were scheduled to be administered every 21 days and that by the third week of each cycle the chemo drugs would be expected to have bashed my neutrophils down. By the way, a neutrophil count of 2.0 flims per togglebumph is the lower end of normal, while 7 is the upper limit, so I was pretty much Mr Average again: for once, a nice place to be.

My brother – a retired GP, not phased by the micro-numbers – simply gave a gasp of astonishment when I told him the news the next day.

As for the chemo itself, it all went into my veins (or in the case of the prednisolone tablets, down the hatch) reasonably easily, the only odd sensation being that the drug administered last, cyclophosphamide, caused, as it had in the first session three weeks before, an instant feeling of faintness and a burning, sinusy sensation in my lower forehead – or was it the bridge of my nose? The nurses responded instantly and raised the foot of the rather splendid adjustable chair provided so that blood could get back to my brain and keep me conscious.

My wife had taken time off work to ferry me to the hospital and, once I was safely in the Day Unit and hooked up to the chemicals, gone off to meet a friend in the nearby town and scout out a place where we could all have lunch later on. So it was that, my treatment done and the scouting expedition satisfactorily concluded, the three of us sat down in the Sorrento Cafe, a mother-and-son operation, to home-made minestrone, carrot cake and very good coffee, not forgetting the obligatory mineral water. The cafe was clean and inviting and my appetite not so spoiled by the meds that I could not appreciate the other edible goodies on display. Some other time, I promised myself, although the promise has yet to be fulfilled.

Nausea was well kept at bay by the excellent ondansetron and the rest of the day passed peacefully.

Sorrento (the real one in Southern Italy) - famous for limoncello, a digestif made from lemon rinds, alcohol, water and sugar.

For some time I had been wondering whether I would be well enough to attend an event fixed for Saturday 30 October: a day conference for the residents of Twickenham to explore in – what seemed at least – an open-ended way the options for the redevelopment, improvement and general waking up of Twickenham Town Centre, surely one of the most unsatisfactory riverside environments in the whole of London, if not the world, the universe, space etc. I am thinking mainly in terms of the way the town interacts with the River Thames, or, more to the point…well, doesn’t.

Over two decades of control of the Council by one particular party were ended at the last London Borough elections, since when the party currently in control have made obvious efforts to consult the people of Twickenham until at last there is some sense of positive movement. The conference addressed a number of issues of local concern, but all focussed around the uninspiring state of the current town centre and the rotten state of the railway station.

One of the major stakeholders in Twickenham is, not surprisingly, The Rugby Football Union, whose stadium brings 82,000 supporters plus goodness knows how many corporate entertainers, extra police, fast food vendors and purveyors of rugby paraphernalia (scarves, silly hats, mascots and the like) into the town on major match days. This vast influx is made possible by The RFU's having in recent years completed the development of its ground, once market garden, to include two new, enlarged stands together with an arts venue, hotel, conference facility, gym and shop – have I forgotten anything? This investment involved in all this building, coupled with the fact that it is a significant donor to a number of community projects and organisations, notably schools, means that The RFU has considerable clout as a driver for town centre development, not least for the improvement of the station in time for the Rugby World Cup in 2015. No axe to grind there, then…

A sculpture of rugby players in a line-out.
This is to be found outside the new stadium buildings in Twickenham.
All the massive figures have immaculate socks, apart from one chap whose elastic is not playing the game (not visible in this pic).

On this particular Saturday an encouraging number of local residents, politicians and business people assembled in the new conference centre to explore some of the planning challenges facing the town. 

You have been patient enough and I will not detain you with the details of the day, least of all the unpopular scheme cooked up by Network Rail and its chosen development partner for creating a high-rise complex at the station, but will just mention a couple of things I observed.

First, I was impressed that the Leader of the Council, a man of tweedy aspect and extremely good manners, was sitting on the floor at one point to observe one of the platform discussions. Perhaps I don’t get out enough, but this struck me as unusually unpompous.

Second, I was less impressed by the schoolboyish guffaws with which a row of veteran councillors (some of them ex-councillors) just in front of me greeted a proposal from one resident to build a pedestrian bridge over the Thames to link Twickenham with Ham. Now, it is true that this resident is a friend of mine and follows this blog, as I follow his, but what really got up my nose was the sheer dismissiveness and idle complacence of the older men. Surely there is no harm in listening to a view, even if you end up disagreeing with it? That is simple courtesy.

I managed to stay for most of the event, feeling quite well throughout (apart from the above incident). I emerged into a pleasant autumn day: the glorious colours seemed to have lasted longer than in some previous years, absence of heavy rain and storms having allowed the leaves to remain on the trees for longer.

Autumn colours within a stone's throw (except that you shouldn't) of Twickenham Stadium, as they appeared on 30 October 2010

On Sunday 31 October my wife felt unwell and rested for most of the day. I went shopping in Tesco. Has anyone counted up the number of ours we spend in supermarkets? This particular branch is enormous and sells everything, with the possible exception of live dromedaries, and it is impossible to escape from it in less than an hour. One of these days I will get myself a step counter and see how many miles I cover pacing the aisles in an average trip.

There was a pleasant surprise when my cousin called in for tea on the way to see one of her daughters, who lives quite near us and who was due to have her first baby in the next few weeks (the little girl arrived safely in December). My cousin brought two of her other daughter’s children with her. One of these was called Hope and never was a child more aptly named, so peaceful was her expression and demeanour.

My cousin and I talked, as we often do, of family history, into which both she and I have carried out only some modest research, genealogy being an absorbing, but time-consuming and potentially expensive pastime. She lives in Somerset, our paternal grandmother’s native county. If you go down that way and meet people called Symons, Lock, Badger or Laver, they may be kin of mine.

The Symons family of Bridgwater were brick and tile makers in the late 19th/early 20th century.
Not sure if they made the type of highly ornamental clay work you see on this building, 84 Wimpole Street, London W1
(where I worked as a solicitor for nine years).