Needles

When I was at university I gained a reputation for being somewhat lazy, and I have to say that it was fully deserved. Never at my best in the morning I would regularly stagger bleary-eyed from my room at around midday to the jeers of those others who had already attended several lectures or been rowing on the river and who were just about to head off to college for lunch. On one famous occasion I rose as the classified football scores were being delivered on Grandstand. Nine o'clock lectures were a physical impossibility...eleven was pushing it. You can well imagine then the mirth with which the news that my first job would entail getting up regularly at half past five in the morning was received. The general view was that this was in some way "pay-back" for my years of idleness and sloth.

This jaunt into my past is occasioned by the fact that I believe the same forces are at work when in comes to my cancer. I have always been terribly squeamish; the slightest hint of the red stuff and I would collapse into a dead faint. I even passed out once at school during the screening of an educational film about cataract operations in Africa. Needles terrified me. Every blood test was an effort of will on my part first to turn up at all and then to remain conscious during the procedure. Most embarrassingly I remember waking up on the floor of my local health centre a couple of years ago with two worried nurses staring at me, probably wondering why such a big strong boy was actually a quivering wimp.

And so it was that I got a lymphoma. Someone or something has obviously got a sense of humour. The tumour (such as it is) is located in my bone marrow which required the use of a spectacularly long needle to pierce my hip bone and remove some of the marrow so that the docs could have a look. They then broke it to me that one of the consequences of this cancer is that your blood becomes extraordinarily thick and that mine was probably about the consistency of treacle. So it was that I was sent for plasmapheresis where they hook you up to a large machine and run your blood through a sort of centrifuge to remove the gloop. In order to do this they had to insert a needle so large into my left arm that it required a local anaesthetic in order to get it in. I thought during all this, and as I contemplated the years of frequent needle-based tests, that the process must be similar to putting an arachnophobe into a room full of tarantulas. I'm making progress - I don't pass out any more and I enjoy Tony Hancock's "The Blood Donor" even more than I used to:

"Nurse: needles don't bother you then?
Hancock: Me? No. I've had too many of 'em my dear. I've had the lot; got arms like pin cushions. Yes I reckon I've had a syringe full of everything that's going in my time. Needles the size of drainpipes some of 'em! You name it I've had it."

Quite.(Watch it here. )

So, what goes around comes around. Is there some kind of cosmic order? Are these things ordained? Or is it just sod's law? I could ask "why me" but I'd have to get up bloody early to find an answer.

On diagnosis 2

I just want say a few things about the breaking of bad news. Now obviously I'm coming at this from one side of the equation and receiving a diagnosis of a life threatening illness is never really going to be taken with equanimity, but in my experience (and those I've met in a similar position) it could be done a hell of a lot better. One blogger, who is a doctor, puts it rather well and like this...

"The first time a doctor breaks bad news to a patient, or tells a family about the death of their loved one, it's an emotionally difficult thing to do. The subsequent times are difficult too. Every patient is different, and the doctor relaying the news has to be prepared to deal with the fears, emotions, questions and comments of the person or people to whom he relays this news. Breaking bad news is never easy. But (and I'm almost ashamed to admit this) it gets easier."

The doctor who told me I had an incurable cancer must have delivered this kind of bombshell hundreds of times before me and doubtless many times more since. It's his job after all. For me it's a one off. And yes I'm sure that he must have either got used to it over the years or distanced himself emotionally in some way but the result was that I was told the most awful news in manner resembling an accountant discussing an overdue tax return - Yes it's crap but not worth getting flustered about. He was calm, precise, thorough...and completely and utterly devoid of any kind of humanity whatsoever. Not a spark. Not a glimmer. Even when my tear-soaked and sobbing wife asked him if he could offer any hope he singularly failed to connect with us on a basic human level. To make a bad situation worse the room in which this dreadful business was transacted was not a place set aside for the purpose but a grotty, airless little cubby hole where various supplies for the ward were kept. Thus it was when we were given some time to be alone we were constantly interrupted by people looking for pots for urine samples.

Yes I appreciate that breaking bad news is a shitty thing to do and that to stop yourself becoming clinically depressed you have to remove yourself in some way from the reality of what's going on....but do doctors really have to do this at the expense of their compassion and humanity?

On diagnosis

Oh deary me where do we start? Where to begin to catalogue the events that so dramatically changed your life? For instance, where exactly is the beginning? It could be the creeping lethargy, the inabalility to get going in the mornings, the reluctance to play with the children because of the energy involved. It could be the call from the GP asking if I could come in immediately to discuss my blood tests. Would it be when the consultant uttered the dread word cancer? Or perhaps it begins when the first tendrils of chemotherapy snake themselves into your bones to destroy everything in their path? Whichever one you choose they're all pretty grim.

The official start , however is the diagnosis. This is when the wheels of the NHS start to turn in your direction and when you realise that when it works it's a pretty amazing thing. It begins with a vial of blood, taken at the request of the GP and dispatched to the local path lab for analysis. Routine. Or so I thought. The phone rings. It's Wednesday afternoon. It's my GP. Could I come in for a chat about the results? Now. The GP spoke softly, mentioned "anomilies," indicated further tests would be needed, "to be sure." But she was pretty sure it was something serious. Within hours I was admitted to the local hospital because they too thought it was something serious. The consultant who'd first spotted the problem arrived with a very long needle which she informed me she intended to stick into my hip bone to perform a bone marrow biopsy. This would confirm what the something was and just how serious. It was left to consultant number two to fill in the details. The something was cancer. A lymphoma. Waldenstrom's Macroglobulinaemia.

GP consultation - Monday morning Diagnosis - Friday afternoon. Five days and your life's in freefall.

Fit the First

I've been what's known as a lurker for the past few months, reading the wealth of material to be found on all the myriad blogs that there are out there. (Bit pejorative that term lurker don't you think?) Anyway I've decided to join the fray and contribute some of my own thoughts and experiences on life with a rare blood disorder. Waldenstrom's Macroglobulinaemia. That's what it's called. That's what I've got. And they can't cure it.

It's a NHL or Non Hodgkins Lymphoma which is cancer of the lymphatic system. There'll be more on what having it actually involves in subsequent posts. Suffice to say that I've had the chemotherapy - with more in the pipeline - and the possibility of a bone marrow transplant (or autologous stem-cell transplant to be precise) to look forward to; so there's plenty to talk about and plenty of treatment related issues to get stuck into. Should be fun!