Dying Ain't Much of a Living.

"I asked the doctor how long have I got to live. He said ten. I said, years, months? He said, nine.. eight... seven..."

Bob Monkhouse.

So this blog post is all about death. I know it's not a subject anyone much likes me talking about because I always get told off when I bring it up - although that is, admittedly, quite a lot. Is discussing the possibility of imminent death some kind of taboo or do people think that the subject itself is enough to put some kind of curse on them? Certainly, people can get very upset at me talking about the possibility of my dying, far more upset than I am, which seems rather odd since I'm the one who is going to be most directly affected.

What I'm always told is that I'm not going to die from this cancer because medical science is absolutely brilliant and if they let me die then it will be bad for their statistics. Whether anyone has discussed this with my tumour is another matter. Presumably, it is not aware that it's not allowed to kill me, because that still seems to be what it's trying its damnedest to do, and that's why I'm shortly going to be ingesting a cocktail of lethal substances in some kind of chemical pre-emptive strike. I was wondering how chemotherapy works so I did a little Internet search for it and was faced with several explanations which sound very clever. It's all to do with stopping the cancer cells dividing and thus multiplying, although unfortunately it doesn't always distinguish between cancer cells and other normal cells which divide which is why some people get hair loss and the like. This is, apparently, less common nowadays which is a shame because I was bargaining on saving some money on my annual haircut. It can also cause digestive problems which is almost a given for me since I've already got IBS and anything even mildly disruptive causes a sudden increase in the rate and duration of toilet visits. But enough about my problems with the runs. Well I say enough but the subject will doubtless dribble on and on, if that's the term I'm looking for.

Anyway, death. I've been thinking about it a lot recently ever since I read that page about mortality rates that several friends told me not to look at. But since they told me after they had already looked, I didn't see why they should have all the fun. Here it is.

To summarise... I have a stage 2b tumour which has affected two lymph nodes so I have a roughly 40% chance of being alive five years after I am cured - assuming I am cured. So pretty good odds on the whole, although the implication of racehorsing makes me shiver slightly. However, there's no point being unrealistic. Oesophegal cancer has a high incidence of recurrence, even if I get through the entire treatment without succumbing to MRSA, the anaesthetic, or the wrong germ at the wrong time during chemo. 

What fascinates me about death most of all is exactly what point I will know that I am right on the verge of death and then what will happen when I reach it. I haven't known anyone die who was sufficiently compos-mentis to tell me any of this. I know some of my atheist friends will wonder why I am thinking about this when there's almost certainly no afterlife and almost certainly no god and so on. But you see I have never quite divested myself of some kind of vague belief and while it is by no means rational, it is surprisingly comforting when you start staring the subject in the face. I do believe there is something after death that I cannot know about until it happens and I find that tremendously exciting. My mother believed that she would meet her husband and her mum again and I hope she was right but I don't have that kind of belief in bodily resurrection. Bill Hicks suggested that we were basically all one consciousness and that God was simply a reflection of that - "someone who speaks to your heart and not in a book that forgot to mention dinosaurs" - and I could go along with that. Perhaps I will just be subsumed back into the wider consciousness? 

Indeed, thought of death itself is quite the best thing I've ever known for focusing the mind on life, particularly the specifics of being alive. Dennis Potter, at a late stage of illness, talked about looking at the blossom outside his window and it being "the blossomest blossom" and I already know what he means. The colours of autumn are that bit more vivid, the cold more bitter, the sun slightly more intense. There is so much I want to do, to write, to experience, to see - I hardly know where to start. That feeling of wishing for the end that chronic depression brings - not suicidal but simply a lassaiz-faire approach to going on any more - has been replaced by a violent, almost brutal desire to live. 

It's also a wonderful excuse for procrastination. "It doesn't matter if I do this or not because I might not be around in six months" and so-on. You have to fight against this, not least because one level, in certain circumstances, it's quite true. But perhaps that makes what you do all the more important and significant. It can also make it enormously freeing. I don't mean that it gives you the right to go about being appallingly rude to everyone and shouting at the rain, although I suppose you could see it like that. The freedom comes with responsibility because it is valuable - it's the freedom to know that whatever you do and whatever happens to you is impermanent so the bad things won't last and the good things become all the more precious for being ephemeral. 

But the point I suppose I want to make is that while life seems more important than ever, the thought of that last moment of life and beyond is somehow everything that isn't depressing or frightening, or even negative. It seems to me to be an open road to a glorious multiplicity of possibilities, where looking through a window into the unimaginable vastness beyond reflects nothing but the fears we bring to the glass. 

I neglected to include a song in the last post so enjoy this one which is impossible to hear without feeling immensely happy. "You Got Me Dangling on a String" by Chairmen of the Board from 1970. 

The Dignity of Indignity

Cancer is like any other major illness in that it tends to make a lot of people very eager to have a good, close look at your body. Unfortunately, the overwhelming majority of these are in the medical profession and their interest is in a professional capacity. If they're not poking around inside with an array of instruments that could have been derived from a particularly feverish fantasy of the Marquis De Sade, then they are attaching things to your torso or sticking a clothes peg on your nose or dumping you on the scales - which in my case produce a gargantuan figure which could conceivably be taken for an international telephone number. 

If you're anything like me, then you may be at least a little bit wary of other people seeing your body. When I can't see it, it's easy to pretend that it looks absolutely fine, even if catching a glance in the mirror after a shower makes me think that some gargantuan pink monster has just invaded the bedroom. If someone else is going to see me naked then I usually make sure it's done in dim lighting after I've hidden their glasses. But illness changes all that. Suddenly, I'm expected to lose any notion of reserve and be willing to strip off and stop whining. There's a distinct briskness to the tone of the nurse in charge indicating that this is all perfectly normal and I haven't got anything they haven't seen before. How they know this is a moot point. But clearly I haven't because the revelation tends to received with a casualness that borders on disdain. 

For certain procedures, the medics try and maintain a semblance of dignity by giving you a hospital gown to wear. Unfortunately, unless you are a very standard size - and I am not, having shoulders the width of a small bus - then they don't usually fit and if they do, they leave a vast gaping hole at the back which gives the world the exciting prospect of a lengthy view of my hairy backside. Last time, during my CT scan, the nurse came up with a brilliant idea of giving me two, one worn normally and the other like a straitjacket and this did at least give me a certain self-confidence that waiting relatives wouldn't be wondering whether or not they could show a Cinemascope epic on my capacious behind. I would be quite happy to wear a t-shirt and underwear but this seems to be frowned upon, even if your pants aren't the colour of thousand-wash grey. 

But once you're in the room, there's no room for reticence as you're manipulated this way and that. If you've had a colonoscopy then you'll know that they waste no time in getting you to point your bottom in an exaggerated fashion so they can penetrate it with a long tube, usually within ten seconds of saying hello. The important thing is to try and distance yourself from the moment. I know some of you like to live in the moment but when you've got a tube sticking up down you then the moment doesn't seem worth relishing.  I've been lucky enough to have wonderful people performing my investigations - I swear that I was held and comforted at every moment during my gastroscopy - although when I'm told encouragingly how well I'm doing, I reflect that I could reply that I'm not really doing anything. Except alternately belching and whelping. So retreating inside my mind is probably the most attractive option. During the last one, I thought of my mum - who died in June - and how we would have laughed about the minutiae of the procedure. I thought of my childhood, my university days, and my teaching career. I thought of the people I love, have loved, and who didn't always love me back. I tried, above all, to think of what makes me me, and the all of the tiny slivers of memory which make up a life. 

This is a way to create dignity out of indignity - a sense of one's individual self which would otherwise be lost in a morass of pain and helplessness. Then you can laugh at the small humiliations which are a necessary part of discovering you are ill, and then becoming well. 

The Waiting Game

Thank you to everyone who read, shared, and commented on my last post. It meant a great deal to me and I am hugely appreciative.

One thing I would like to clarify, however. In no way do I want to disparage the actual care I have received from the NHS. The technicians, nurses and doctors have all been, without exception, absolutely fantastic and have made some very unpleasant experiences seem a little bit less unbearable. I would particularly single out the gastroscopy which was a horrible procedure during which I was treated with care and attention during every single, solitary second. I know one of the nurses involved may well read this and I hope he knows how much his kindness meant to me. 

Having said that, the way I feel at the moment is that I have been swept up by an essentially benevolent but unimaginably vast machine, in which everything is processed smoothly and swiftly and without any input from me. I was going to say I am a cog but that would be inaccurate since I don't have even that level of influence. And the worst thing? I know this is entirely necessary and for my own good. I was diagnosed four weeks ago and we're already well on the way to discussing the chemotherapy options. It has to be like this in order to keep me alive. 

But it's not easy because days of nothing are interrupted by flurries of activity which are followed by more nothing. This is only the beginning of course, and I am well aware that cancer, just like other serious conditions without the heady glamour of malignancy, is pretty much all about waiting. For those of us not gifted with a surfeit of patience, that's one of the most difficult things. I had the gastroscopy then a wait of six days before the initial diagnosis from the biopsies. Then four days before the CT scan and a further five days before I got the result. A further wait for the PET scan followed a week later by the result then a week before appointment with the surgeon. I know that this is, in medical terms, extremely quick. But on the days when I can barely think of anything except what might be growing inside of me, as the minutes seem like hours, that's not a great deal of comfort.

Still, it might be wise to reflect, time is one thing I have got at the moment. Lots of it. Time to read all the books I've never read, watch the films I've never seen. Fact is though, I seem to spend a lot of it sleeping. This is probably related to taking Diazepam to calm me down when I get anxious but it still seems like something of a waste. But I suppose it's only a waste in the sense that it's time I could otherwise spend not doing the things I want to do, because a lot of waking time is spent either thinking about having cancer or thinking about, and rejecting, doing something more constructive. 

But it's not all doom and gloom. I have read several books in the past couple of weeks, all by the same author, Sophie Hannah, and all with virtually the same plot. I've also watched a few mediocre-to-bad films, the worst of which was Sidney Sheldon's Bloodline which is strongly recommended for connoisseurs of terrible cinema. 

Best of all has been the comradeship of friends who have done that most wonderful of things; they have made me laugh at times when I thought I might never find anything funny again. You know who you are and you know I love you dearly. One thing though. Don't worry about sharing your own problems just because you perceive mine to be greater. I find hearing about the troubles of others to be a break from my own and, let's face it, the last thing I want to is talk about nothing but cancer. Which is rich coming from someone who has just written several hundred words on the subject. 

Anyway, another song link. This is a particular favourite by Paul Buchanan.

Cancer Man

It's been a while since I posted anything in this blog, largely because my depression wasn't sufficiently interesting to warrant another post. However, since then things have occurred which make how I felt last year look like the proverbial picnic so I thought it was about time to start putting things into words. I don't know how many people will read this but to be perfectly honest, I'm doing it for me. So if you want to come along for the ride then you're welcome. I don't know how often I will be updating though.

So, cancer. Cancer. Horrible word, something to do with the hard consonant at the start perhaps. But then I don't feel that way about the word "cup" or "captain". Or even, oddly enough, the star-sign Cancer. So it must be more than just the sound. It's everything that it implies - IV drips, nasal oxygen catheters, people wearing pink, death... You can hear "Cancer" underlying everything that the surgeon says to me, right from the moment he begins with "So tell me where you've got up to." I want to scream, "I've got fucking cancer, do something about it." But instead I take a deep breath - not too deep in case someone takes it into their head to test my breathing - and go from the start. The twenty years of acid reflux, the chest pains, the inflammation of my oesophagus - henceforth to be sometimes know as gullet because it's easier to remember whether it's spelt with an "a" or an "e" - and the difficulty swallowing. 

I am well rehearsed in this story and sometimes embellish it with little details like "It took me twenty minutes to swallow a bread roll," or "Oooh, I've never known reflux like it" as if I'm some kind of hydrochloric acid connoisseur. At anything like this, the given professional - in this case a surgeon but I have also spoken to a surgical assistant, a nurse, my GP, and am prepared to repeat the whole sorry tale to the oncologist - smiles and nods, not surprisingly since they've got it all in front of them in my notes, give or take the odd bit of elaboration. I'm reminded of Miss Schofield in Alan Bennett's "A Woman of No Importance" - "I was all right on the Monday. I was all right on the Tuesday. I was all right on the Wednesday until lunchtime, at which point all my nice little routine went out of the window." But of course she died, so maybe another tack is called for. 

The surgeon, Mr Dexter, is at least honest with me. None of this "It's looking fine" nonsense that I sometimes get. I have Adenocarcinoma of the Oesophagus and it's not good, not good at all. It's one of the bad boys of cancers, more difficult to diagnose and cure than most and only the ninth most common in the UK. The top four, you'll be interested to learn, are Breast, Lung, Prostate and Bowel which sounds like a firm of solicitors. However, all is not lost. Oh no. The UGI Department at St James' Hospital in Leeds has such sights to show me. But first they have to do another endoscopy for reasons I don't entirely understand but seem to be something to do with the lymph nodes. 

If you've followed me this far, you're no doubt wondering what the lymph nodes are. Well, apparently they are part of the lymphatic system which collects peculiar fluid from various organs and carries it around the body in some kind of restless continuity. I have two lymph nodes next to my tumour, which is apparently baaaad, and they might or might not be affected so another look at them is required. This time, however, I am demanding a sedative on the grounds that last time it felt like someone had pushed a chimney brush down my throat and given it a good push-through. 

I'm not very good at being demanding however. I tend to arrive with lots of forthright, assertive things to say and then relax into my default position of saying "thank you" a lot. I intended to try and find out why, when I live near a perfectly good hospital, they insist on sending me into the badlands of Leeds at a moment's notice. I did hesitantly mention it but was slapped down quite quickly with a lecture on how good the hospital is and how lucky I am to be a patient there. Since this comes perilously close to telling me that I'm fortunate that cancer has given me the chance to visit, I decided that discretion was the better part of valour.  

It might have helped had I not been in Leeds since 8.00, having arrived in time for a physical endurance test that never happened. You see, following a sleepless night in case I missed the alarm, they dragged me out of bed with the lark, stuck me on a hot, crowded and frankly smelly bus and forced me to walk miles to another hospital which is, helpfully, halfway up a hill. Following these treats, they stripped me to the waist - more unpleasant for them than for me I suspect, since I rather resemble a cross between Jayne Mansfield and Richard Griffiths - shaved half my chest hair off, stuck wires to me, pushed a breathing monitor in my mouth, shoved a clothes peg on my nose and stuck me on an exercise cycle. They then took my blood pressure and, fuck me sideways, it was apparently quite high! Cue five minutes sitting there as if I was auditioning for Page 3 followed by another blood pressure test. And, guess what, despite this relaxing environment, IT HADN'T GONE DOWN. Much wailing and gnashing of teeth later, it was decided that I should come back when "I felt a bit less stressed". I said something like, "You mean, when I haven't got cancer?" and received a stare which indicated that levity about my condition was not appreciated. 

I stormed out in a polite sort of way, having decided that I was going to abandon all treatment and beat the tumour with a combination of willpower and bacon sandwiches from Greggs. In fact I was so cross I had two bacon sandwiches. Being cross does have its advantages. Then I ambled through Burmantofts, the Monte Carlo of West Yorkshire, to St James' Hospital and thought that as I had an hour or two to spare, I would go and speak to the Macmillan Cancer people on the first floor. Big mistake. I don't live in Leeds you see so to speak to me would break some sort of West Riding Omerta. I then rang my (lovely) Macmillan contact in Harrogate who persuaded me that seeing the surgeon was probably a better idea than drowning my sorrows in a bucket of Domestos or taking up Christian Science. I also wandered along to the canteen for a very nice bit of meat and potato pie so the day wasn't a total disaster.

So that was my day, darling. Nighty night.

Oh incidentally, every time I post I intend to link to a song I like. So pop-pickers, here's "Hey Judas" by Black Star Riders.