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.”