Tuesday 5 October 2010 was to be another milestone in my experience and understanding of this disease and its treatment, but in the small hours of the day, as I lay awake listening to iTunes U on my phone, I had no inkling of this. Instead I found myself pondering the distinction (and maybe at the same time the complementarity) between neural events and mental events and wondering whether we would ever fathom the mystery of consciousness, how it is that we experience and interpret being alive.
When however I arose from my bed at a normal time, such pretentiousness was driven from my mind (whatever we mean by such an entity) by the persistent feeling of dizziness hanging over from the previous day. Mind you, I was not so much in a whirl that I was unable to continue my rather disorganised attempts at maintaining physical fitness and so it was that I managed 20 press ups.
My brother arrived in due course to take me to my regular appointment with Dr M, the haematologist. While we waited for the usual blood samples to be taken and for me to be called in to see the doctor once these had been analysed, my brother and I chatted merrily, as we do, about our many matters of mutual interest. Not least among these is the state of the NHS, in which my brother worked for many years as a GP and which he now supports as an independent consultant.
In due course, the phlebotomists and pathologists having done their work on the samples, I was called in to the doctor's office and my brother came too. I had come prepared to ask about this mysterious substance, rituximab, but I found the doctor ready to head off my question at the pass. How could I forget she was the physician-in-charge? She told me that she had, given the rarity of my lymphoma, consulted a leading specialist in the condition, based at University College Hospital (UCH), one of the London teaching hospitals. The expert, who had also offered to see me in due course, had indeed recommended treatment with rituximab, but this needed to be combined with a chemotherapy regime known as CHOP, named, as such regimes are, by the initial letters of their constituent elements. The resulting concoction, to be delivered every 21 days (to allow for recovery of strength) was known as R-CHOP and offered a better remission than the relatively simple pill-based treatment I had so far been receiving.
So I was being offered the baby and the bathwater, but what was in the water? You can find a description of R-CHOP here, including a list of side effects. The most obvious ones that occurred to me at the time, and which Dr M confirmed, would be nausea and possible vomiting and hair loss, although I was assured that anti-emetic drugs were now very effective and would be included in my treatment. Going bald for a while was just something that I would have to accept, although I found myself getting quite emotional at the prospect of it, I think because it would mark me out to all the world (okay, that's an exaggeration) as a cancer patient.
I would have to wait for the rituximab. There were two reasons for this: the first was therapeutic; the second was economic, in that The National Institute For Clinical Excellence (NICE) had not so far found it in its steely heart to admit this well-known and effective combination of human and mouse protein into its approved armoury of treatments for Waldenström's Macroglobulinaemia. The doctor would therefore have to apply for special funding, either from the local PCT (itself due for the chop under NHS restructuring plans) or from a special £50 million fund set up by the Government for cancer treatment in London. She was optimistic that funding would be forthcoming, but rituximab would not be added to my treatment regimen until the third or fourth round.
When however the good doctor produced the yellow consent form for me to sign, she placed a white sticker on it on which was set out a list of side effects, the last one of which alarmed me even more than the others: “increased risk of leukaemia". Suffice it to say that I did not feel inclined to sign the form there and then. Dr M explained that the risk was of acute myeloid leukaemia and was in the region of 5%; also, my existing disease would be a complicating factor in any treatment of AML. She emphasised that the treatment regime recommended was most powerful and effective but conceded that the leukaemia possibility was “the sting in the tail".
I needed time to reflect and was, more than ever, grateful for the presence in the room of my medically qualified brother. It was agreed that he and I would go away and reflect, have some lunch and then go back to see the doctor in the afternoon.
As on the day of my diagnosis, my immediate need was to get out in the fresh air and be under the naked light of heaven. So it was that I made my way outside the hospital entrance to the spot where I had felt the clasp of despair after hearing for the first time that I had an incurable cancer. My emotions on this later occasion where a muted version of that panic but threatened to drag me down once more into a bleak darkness. It was at this point that I felt the benefit of my previous experience and knew that I had acquired some resilience over the few brief weeks since my diagnosis.
I first telephoned my wife, who was quite clear on two things: first, that the treatment recommended was a good idea and second, that she would support me through the rigours of the regime. I next rang Father Milligan, the vicar for whom I work, to inform him that I could be about to embark on a course of treatment that would keep me away from the office for some months. This was bad news for him, but he was gracious and compassionate, as always.
Over the course of a simple lunch from the hospital café, my brother watched supportively as I talked myself into accepting the recommendation of, now, two specialists. There was just one question that I needed to put to Dr M before my mind could be finally made up. Back in her consulting room after a little while I asked her whether the risk of leukaemia also attached to my current treatment. When she confirmed that it did, I signed the consent for R-CHOP.
Treatment would begin the following Friday, 8 October but first she needed to record my weight and height as the doses of poison would be tailored to these. She also took me to meet the nurse in charge of the Haematology Day Unit next door. I was struck immediately by the positive atmosphere among the various patients distributed around the two circles of comfy chairs, each one attached to a drip, some receiving transfusions of blood, others doses of clear liquid, yet others resting after treatment. I was to become very familiar with this room—its comforts and trials—over the course of the next four months, but for now I returned home in something of a daze.
As it happens, the delay between blog time and real time has caused the writing of this entry to coincide with my first appointment with Dr M following my final dose of rituximab on 11 February. I am therefore going to fast forward to today and tell you that indications are that treatment has been successful: my haemoglobin now stands at 12.1 (grams per decilitre), whereas at diagnosis last September it was 9.8, so I am markedly less anaemic, with the prospect of further improvement as the depressive effects of chemo on normal cells ebb away. The production of ImG paraprotein (that was silting up my blood vessels) has also markedly declined. More unpleasantly, I will be having a further bone marrow biopsy (BMB) on 28 February to see how much the population of rogue B-lymphocytes that were infesting the hollows in my bones has declined. There will be another CT scan a couple of days after that to assess the reduction in swelling of my lymphatic tissues, notably the spleen.
Dr M wants to see me again towards the end of March. At the beginning of March I will be going, armed with BMB and CT results, to see the expert at UCH, who has something dramatic planned for me later in the year. This will in fact be my second visit to UCH, but the account of my first visit as well as of the highways and byways of R-CHOP and other adventures between October last and today will follow in the normal sequence of blog time.
I am hoping that I will be able to bring the timing of blog and actual events closer together over the course of the next few weeks, but the return to normality and the steady return to my day job may just get in the way a bit. We shall see, but thanks for being with me on the journey thus far.
|A scene from Aesop's fable of The Mouse and The Lion, another instance of how a small entity comes to the aid of a larger one. You can find the story here|
Rituximab is an assemblage of human and mouse protein that targets a particular marker on WM lymphoma cells and wipes them out. Respect the mighty mouse, then.