|All written out for me...|
It is a very different clinic reception that my wife, son and I enter on the morning of Thursday, 9 September.
The doctors are working to a full diary and it would have been standing room only had not an older couple shifted seats so that we could all sit together. Like me, many are accompanied by family members and I only see one person obviously on his own, a neatly dressed middle-aged man contentedly reading and looking extremely well. I play “spot the patient” and conclude that a tightly held appointment card is the clue.
All ages are represented in this small community of the haemotologically challenged, although there is a preponderance of the middle-aged upwards. Dr M is in plain sight, emerging from her room to speak to the two receptionists, to call patients or occasionally to leave the clinic suite altogether. She wears a heavy expression although her manner is as calm as I had experienced it a couple of days before. She is rounded in the shoulder as if burdened with the necessity of having to give too much bad news to too many people.
Two side rooms are also in action, one for the administration of anti-coagulant injections and one for the drawing of blood from each patient, including, in due course, me. Another two samples are duly and efficiently taken and soon on their way for assessment of my cell counts and other purposes more esoterically biochemical.
As we wait for the call from the doctor herself, my son and I share a game of Trivial Pursuit on my phone. You are right if you think that I am to a degree obsessed with this device, but in short it has proved a lifeline and entertained me through more than one long night watch over the last few weeks, as you will hear more of in due time.
Gallows humour comes from a weak looking man being wheeled through from his appointment with the doctor, on his way back, I would guess, to a ward. Clad in the weary serenity of the truly sick he tells an old lady, there with her husband, “I’ve been bad, see, and that’s why they’ve kept me in longer. That’s what happens, if you don’t behave…”
Dr M now calls me in and, after brief introductions to my family, we all sit down to receive confirmation that, following the bone marrow biopsy that has left me with a bruised pelvis, the diagnosis is indeed Waldenström macroglobulinaemia (or—to raid the hard-pressed alphabet still further—lymphoplasmacytic lymphoma). So, the club of which I knew nothing a couple of days ago has embraced me as its newest, dazed, member. Treatment, which is briefly summarised, will begin immediately and consist of the following tablets:
- Chlorambucil (aka Leukeran): this is the chemo, a cytotoxic (“cell-killing”) drug derived from research into the action of mustard gas after the First World War. I will take this for two weeks and then stop for two weeks, continuing this pattern for about six months. Not a particularly targeted treatment, to be sure, but a poisoned scythe to chop down the profusion of abnormal paraproteins as they emerge into my circulation. I am told I will keep my hair.
- Prednisolone (UK English name): a powerful steroid to suppress abnormal behaviour of the bone marrow, anther line of attack against the rogue cell factories that have been toiling away deep inside me for the last five years or so. This may prove such a tonic, apparently, that I may find myself getting up at 5 in the morning to do the ironing. As it generates dependency, this drug will be withdrawn slowly as the first month proceeds. It may have the added benefit of clearing my boring old psoriasis, although there is the risk that this will”rebound” with the cessation of the drug.
- Lansoprazole: a proton pump inhibitor to control excess acid in the stomach that arises as a side effect of prednisolone.
- Metoclopramide : An anti-emetic to counteract nausea arising from the chemo.
- Allopurinol: a bit of a horse pill this one (300mg taken with plenty of water) to mop up uric acid released on the destruction of abnormal cells. Without this, I could develop gout caused by the deposit of uric acid crystals in my joints (ouch!)
In addition, I will take an antibiotic to deal with the chest infection that is still with me, although the cough has largely abated. She writes it all down for me and answers a few questions I have about diet and exercise (her basic advice being that no special measures are necessary, but that balanced diet and regular exercise are ‘good things’). An ominous note is then sounded: I can expect a crisis in about ten days’ time, when the combined effects of the medications and the disease itself will be to drive my immune system to its lowest point ever. If at that stage I develop a temperature in excess of 38º C, I am to present myself to A and E for a possible admission to hospital for intravenous antibiotic and monitoring.
That is pretty much that, and I am given an appointment for two weeks ahead, 23 September. It remains for me to pick up the boxes of pills from the hospital pharmacy. It ends up that these are delivered to me personally in the clinic reception by a softly spoken Scot, who introduces himself to me as the specialist oncology pharmacist, saying that I may be seeing quite a bit of him. As he is clearly a kind man, I am able to reply without any irony that I will look forward to this.
And so home for an afternoon of relative normality: the drug regime will begin with breakfast in the morning. We are joined in the afternoon by my son’s girlfriend and the subsequent trip to Waitrose to shop for a few items can be counted as therapy. In this supermarket of manageable size is a well-lit normality: fresh food smells, golden bread and ripe fruit helping to anchor me in the much needed everyday.
Sleep comes with difficulty, but I can see a path ahead and am at greater peace, at least until the morning of the next day…
|Dr Waldenström, this time from 1963.|
A kind looking man, do you not agree?